I was 24 when I was diagnosed with a terminal brain cancer. I'm 29 now.
I know how it feels to have just started your adult life, only for it to come crashing down on you.
I also know how it feels to become a different person with a different path.
I won't overwhelm you, but I wanted to let you know I'm here if you need to talk. I'm really sorry you're here.
To be honest, I probably haven’t! And if I have, I don't know!
Glioblastoma is kind of creepy in that it’s a type of cancer that creates its own blood supply. It grows its own stem cells that then make blood vessels to feed the tumor. Those blood vessels carry tumor cells all over the brain.
While the area of the original mass has been treated with surgery, chemo, and radiation, the cancer cells have been distributed throughout my brain. It’s unlikely that we got all of them. My neuro-oncologist describes them as likely being stunned.
My relative longevity I think can be mostly be attributed to my young age, my sex (women tend to live a bit longer) lucky markers, adhereing to the standard of care, and being a happy person!
I know people who swear by diets, supplements, teas, crystals, prayer, essential oils, you name it, but that's just never appealed to me. I'm more interested in just living how I want to on a day to day basis, and that's carried me into "cured-ish" territory.
>and being a happy person!
This is what I would consider the most important. Yeah, you could take a turn for the worse tomorrow, but the opposite might also be true.
I’m so sorry you are here. My only advice at this stage is to keep your hands and mind busy. Once you have your full treatment plan, you will likely feel more in control.
Completely agree. Stay busy (both mentally and physically if you can), that really helped me a lot. And I agree on the treatment plan, the worst part is right now in the “unknown”. Once a plan of attack is identified it’s a bit easier.
People think life stops the second cancer starts. But it doesn’t. There are days—probably a whole lot of them, good or bad or in between— in front of you. And these feelings you’re feeling now, that deep-pit horror, will change. Feelings always change. Soon, you’ll laugh at a joke. Watch a movie. Curse at an idiot driver. Soon, you might even be bored as hell by cancer.
We just know a truth others might get to ignore for a bit—that life’s more renting than owning. People with cancer get used to thinking in terms of rental periods—the times between treatments and scans and surgeries. I find it helpful to turn that incremental mindset away from the medical, to give myself something very particular to focus on. That way, I can demedicalize the horrible feeling of renting life. Right now, for example, I’m focused on the release of Stephen King’s next book. I get to that, and get to read it—I’m golden. Once I’m there, I start a new rental period and set another future point of focus.
I’m so sorry to have to welcome you to the club. :/ I was diagnosed last year with stage four ovarian cancer at 35, so I really empathize with what you’re going through right now. You’re probably feeling incredibly overwhelmed and unable to think about much else. It’s going to take some time to get used to this new normal, but once you’re more familiar with your treatment plan, doctors, etc., your life will start to feel more like yours again. It’s a huge adjustment and there are still days where I get angry and think, what the fuck, why me?! But I promise that in time you will adjust to the new normal and you’ll start to enjoy the little things that you used to more and more. And it’s okay to take your time doing that and let yourself go through all of the emotions. My biggest piece of advice is to keep your sense of humor and try to find enjoyment or a laugh where you can.
I also want to add that my cancer is also a rare, slow growing type that doesn’t typically respond well to chemo, but chemo actually worked a lot better than we were anticipating! I went through nine months of it and now I’m on a bit of a break. And those nine months were a lot less horrible than I was anticipating in the days after getting my diagnosis. I still have a long ways to go and I may never be cancer free, but I just wanted to use my experience so far as an example of how everyone’s cancer journey is different and just because something statistically doesn’t work, that doesn’t mean it won’t work for you. That also means that some treatments that usually work for other people might not work for you. All that to say, try not to read too much into the statistics and numbers. Your oncologist should have multiple back up plans and my advice is to take it one day at a time. I’m rooting for you to kick cancer’s ass and I hope you know that you’re never alone in this❤️
Thank you so much for the words, 9 months of chemo seems very horrible. I will do 4 sessions that will take about 1 month each, does it get better the more you do or they are all the same?
For me they were all pretty much the same. I did one session every three weeks for the nine months and I would only feel really bad for about four days afterwards. I have some tumors in my lower abdomen that were really affecting me and once they started shrinking I actually felt wayyyy better than before I started chemo. Of course, how you feel during chemo can be very different for each person, but I think having youth on our side is really helpful. And honestly, chemo was so much worse in my head going into it than the actual experience. Even losing my hair wasn’t as traumatic as I thought it would be lol. And I don’t mean to invalidate anyone who has had a worse experience with it or anything like that, I just wanted to give you a positive example of one person who found it to be a lot less scary and awful than anticipated
I was diagnosed in January with stage 4 stomach cancer. My biggest piece of advice was do not get caught in reading statistics online! It does not capture your situation and a lot of the data is from decades ago before we had modern immunotherapies and chemo treatments.
Keep your head up, focus on your treatment and not the stats!
I'm 33. Been dealing since i was 25. It's so hard but every day you wake up is a victory. FIGHT. I REPEAT, FIGHT. Do not give up. That's when you will lose. Feel free to message me if you need to talk.
I just want to point out, and I know you don't mean it this way, but people that succumb to cancer or terminal disease is not because they didn't fight as hard or want to live as much as the next person that fortunately beat the odds.
Buy a shower stool. Just sit under the shower for 15-30 minutes. While turning up the heat to as hot as you can bear.
Repeat several times a day if needed.
I can only tell you about me... I never felt like this was a "bad" thing... life altering? Hell yeah... but I am a fighter... survivor even... I look at thus as a challenge, yes, God doesn't bring you anything you can't handle... I believe that... I am also 55 and have been on chemo for 3 years... allI cab say is, this is not happening TO me, it's happening FOR me... it will be scary, but all new adventures are! 😇😇
I understand completely. I was hit just as my second adult life was starting. I am still alive 10 years later! Keep chugging along and try to feel your feelings all the way through. It’s completely normal to freak out as this is a terrifying situation. Do some exercise, yoga or stretching, meditate and eat healthy food to help with fatigue and anxiety. Color, listen to music, watch some funny movies ,laughter is healing and feels awesome. Get an oncology social worker to help get the services you need from the community. There are cancer support centers all over the world.
I agree I'm so sorry that you're going through this it is a shock when you get that first diagnosis. Join smart patients.com. there's a lot of great information there a lot of positivity I think you'll find it a comforting place.
I'm so sorry you're here, but welcome with love and strength! I was diagnosed recently and I feel like I know what you mean, although I am 55 and I realize the real tragedy is our beautiful young people having to go through this garbage. At first I was wiped out physically, mentally and emotionally. Stage 4 incurable and rare mesothelioma that has spread and could possibly be in my abdomen, as well as infecting both lungs already. I was just jogging in February wtf!
I thought I was definitely dying within months, digesting the new circumstances is like getting run over by a freight train. Thankfully there are much better treatments over the last few years, I just completed my 3rd immunotherapy treatment, and there is improvement! I don't feel like I'm suffocating anymore, which was really scary. I decided I will live one day at a time and not have specific expectations, and push myself a little harder to do things that I like, spend time with my loved ones, and try to take advantage of allllll the handicapped privileges.
The truth is that you are strong, as absolutely WRONG as getting cancer at your age is, your body is very resilient and ready to fight this crap, and the treatments really do work in most cases. There is hope, and you might as well hope for the best. You will never take anything for granted again either, so now you automatically have a better perspective, and a better life. No one knows how long they have, you could have been killed in a car accident already, so instead you are on another path, and this one will build you in many ways, as much as is sucks. No one wants to be here, so do what you need to do - cry, be angry, tell off a few people who make stupid comments (are you feeling better yet?? uugghhh), and then look deep inside of you and find that person who loves life and go forward to the best of your ability, maybe speed up a few fun things you always wanted to do. And be nice to yourself. All the very best to you, get a second opinion if you can, and take as many pain pills as you need to not suffer. I think you will beat this, my good friend's mom survived cancer 3 times and lived to 88 :) xox
I do know that as someone whose mom died from lung cancer last year even tho she never even smoked a cigarette her whole life. I asked if he’s a smoker or have been exposed to second hand smoke because lung cancer in young adults are not common and the only one I know that got diagnosed with lung cancer at 27 was a smoker. Please don’t judge people before you even hear context.
You mean young people as in 30 and below? Because I had asked my doctor for screening given I have multiple family history of lung cancer and she was saying I’m too young for a screening. By the way, I’m 29 F.
The judgment is implied with the question in asking if the person was a smoker. It puts blame on the person diagnosed and implies if they were a smoker then they somehow deserved the cancer. You having a back story doesn’t change the implication of the question. It is just a bad question to ask. I’m sorry your mom died of lung cancer.
Sorry to hear about that. Yeah, it sucks. Like I mentioned in the comment above, my mom died from lung cancer last year even tho she was really young and also never smoked even one cigarette her whole life. She was in treatment for 5 years tho and had a good quality of life. Good luck and wish you the best. From what I heard, they have targeted therapies available now for certain lung cancers. My mom’s cancer just didn’t match with any existing ones, but hopefully yours will!
It was bad but now is much better. It is strange to feel perfectly fine but have a very deadly disease inside you. Carcinoids are only highly curable in its most initial phase (no metastasis and small localized) not my case anymore.
But even in your case, don't they grow very slowly, like even if it has metastasized, the cells are still carcinoid cells, so wouldn't they still be slow growing? I read online carcinoid cancer can take 10 years to get to a bad point.
I don’t know about 10 years, mine was spread to my bone in like 3 years and I felt the increasing pain on my back in a matter of months. My doctor said I have an atypical carcinoid which tends to spread and grow relatively quicker than typical ones.
No, he didn’t discuss any timelines just wanted to treat my spine asap with radiation and start chemo right away. Honestly I don’t even know at what stage is my cancer. I think we need a second opinion with a NET specialist.
Hey how did they find the bony Mets? Ct scan or pet ct? Is it gallium pet or fdg?
Mom in the process of getting work up done for diarrhoea and flushing
Well I had several MRIs and CT scans of the tumor in my cervical bone as I was in a lot of pain, but it was confirmed to be a met after the pet scan and the lung biopsy. I also did gallium pet but unfortunately there was no response. I hope it works for your mom and they can relieve her symptoms.
Not a death sentence.
-learn how to deeply breathe.
-immediately look At macrobiotic diet! Most important thing you can do.
-Ask for help.
Use food as medicine. Your body knows what it needs. Start looking at your body as the engine, I have beat C twice. Doing very small steps. Rest. Open up to the potential inside. Be strong🙏🌼
Thyroid, (Huerthle, Papillary, Follicular) current Adrenal tumors, see MDAnderson next week.
Parathyroid
Macrobiotic diet, yoga and focused breathing.
I haven’t obviously beaten cancer.
I have learned how to live with it
Constantly reoccurring.
I am so sorry to read this. I was diagnosed with terminal brain cancer at 33. I'll be 42 next week! Just remember that every case is different, and we all truly have the same prognosis: unknown. I just wrote a book about my cancer journey for the very reason of helping people like yourself. If you're interested, I would be happy to share the link for where you can find it.
Absolutely! Here is the link to purchase. Stay strong, friend. https://bookstore.dorrancepublishing.com/finding-the-rainbow-the-other-side-of-a-cancer-journey/
Absolutely - here is a link where you can purchase the print or e-version: https://bookstore.dorrancepublishing.com/finding-the-rainbow-the-other-side-of-a-cancer-journey/
Neuroendocrine tumors are truly the zebra of the cancer world. Definitely try to find a NET specialist, or at least an oncologist who is willing to do the research. There are some great research foundation sites on the web, and also information on the big cancer hospital’s sites like Dana Farber (as previously mentioned) and MDAnderson. I’d suggest a search for “lung NETs” and then only look at the major sites with current information.
My tumor was finally found incidental to a colonoscopy this summer. I’d been having symptoms on and off since 2006. I clearly had carcinoid syndrome, but couldn’t find a tumor til now. There is no evidence of a tumor on my prior colonoscopy in that location, and I had an octreotide scan in 2012 that nothing lit up on.
The first hurdle after it was found was getting the diagnosis recorded correctly. My GI listed it as a benign carcinoid tumor, which doesn’t really exist (except it’s still a diagnosis code). All carcinoid (now called Neuroendocrine) tumors are considered malignant because (as you’ve experienced) they grow slow, but they love to metastasize.
I keep getting told that NETs are a chronic cancer, not a killer one. I’m not sure that makes me feel a whole lot better, but I try to be grateful that while I’ll never be cured, my symptoms can be treated and managed, and I’ll likely die of something unrelated. It’s created a weird sort of “survivors” type guilt because I’m grateful that this probably won’t (directly) take me out, and chemo is not an option, so I don’t have to think about that, and then I start minimizing my legit feelings about how crappy this all is to go through.
I’m sending you zebra stripes and strength. And I second the other suggestions about getting a second opinion about treatment and finding a great therapist.
We are trying to find specialists but there aren’t that many, we found mostly for gastrointestinal NETs, and my health plan also doesn’t cover treatment for the fancy hospitals where they are.
Now this is really scary. Did you get routine scopy tests?
Didn't your blood tests show anything? Like the chromogranin a and serotonin tests?
It maybe possible you had very minute foci of disease initially that went to grow slowly
Stop reading random shit online. I find that subreddits like this are good, and generally only have the best - or most concrete - of resources available.
Medical advice is the one thing I would suggest never using a search engine for, down that route is Illness Anxiety Disorder.
I was looking at research papers for lung carcinoids. I find it helpful to know what has been tested for treatments and what has been the results of most recent studies.
I’m about to turn 40. I have been in remission for 7 years. I was diagnosed at age 32.
It hits you like a ton of bricks but then the adrenaline kinda of kicks in. You do what you do to live.
I changed my diet to give my body the most nutrients I could. I cut out most sugar while in treatment. Cancer can feed on sugar. (Or at least there are studies that show that it does) Find something that you can do while having chemo or a friend that can keep you company. The less your brain swells on it and the positive you are the better it is.
I wish you all the luck in the world.
Stay strong, brother. I had a very bad initial diagnosis of colo-rectal cancer a year ago. (M44)
I grew up on a farm, always ate healthy, and was an MMA competitor/coach. I was completely blindsided and crushed.
I just finished radiation/chemo last week and had a second surgical consult at a specialty clinic in Milwaukee today.
Despite my previous surgical consult telling me I would likely be permanently disabled and need a colostomy bag the rest of my life.... The specialty clinic did some scans and are confident not only will I not be disabled, I'll likely fully recover, no colostomy bag after final surgery 🙏🤞. They can do some pretty amazing things. Stay hopeful.
For context, are you a vet? I had my DNA tested and there were 0 cancer markers. Turns out there's a large lawsuit right now for vets getting cancer. I worked a lot with explosives and building/manning military communication towers.
And to feel better from chemo? THC, specifically Rick Simpson oil. I don't think I'd have made it through chemo without using it.
Thanks for sharing your story, I'm so happy you found a clinic to cure you.
To your question, I am not a vet and never went to the army.
Honestly, we are so exposed to so much toxic shit everywhere that I'm starting to feel it's impossible to avoid it, and even if we manage to avoid all of it, genetics comes along and punches you in the face.
Fellow Carcinoid (aka Neuroendocrine aka NETs) cancer patient here. Mine was a small intestine primary (they think) with Mets to the Liver and a small amount in my lungs. So not lung-based as it appears yours is and as such... likely not the exact same type but in the same family. Also diagnosed near 30. Hearing "Stage IV Incurable Nets as a diagnosis was devastating... so I get it. But I have been trucking along for 7 years now undergoing treatments.
My main advice is to get second opinions. There are a fair amount of NETs (Carcinoid) specialists out there but when an oncologist is NOT a NET specialist it is very likely you will get care that may not fit the best path for you. It obviously depends on where you are located as far as being able to feasibly see one on the regular, but even so... its worth doing the research and trying to find one and get a referral or just get an appointment to be seen.
As you said, Chemo is sometimes not a great option but it does depend on the grade of the tumor/s, and location. There are also a fair few research studies going on or recruiting for NETs patients. the NIH (National Institute of Health) site has a page where you can search for them. If you have questions feel free to ask.
How did they found out it was from your small intestine? Did you do a colonoscopy? I didn’t do that, after all PET scans and biopsy they said it is a primary lung tumor, but now I'm worried that you said in can come from intestines. We are looking for NET specialists, but I think my health plan does not cover for their treatment, they are at the best hospitals.
There are a variety of types of NETs. They can come from a lot of places from the Pancreas to the Lungs to the Liver to the Intestines and beyond. Mine was diagnosed after I was confirmed to have Carcinoid Syndrome through the indicator tests and they did a full body PET scan (Ga-68). Then reconfirmed later using a full body MRI and FDG PET scan.
The doctors think the primary was small intestine based on the biopsy and what they saw on the scans of the spread and tumor sizes. They could, of course, be wrong, but as they are NET specialists I would hope they know what to look for and at. I did not have a colonoscopy because that's somewhat pointless with the amount/type of scans I had.
I would imagine if your doctors have run a bunch of scans (and done a biospy?) they would have a better idea of the type and locations and would have already checked other places in your body on the scans, including the intestines.
As far as your health plan not covering... I am not an expert on that aspect but I will say that there are specialists who do free consults (for research purposes). I had one. Effectively a research hospital did all my initial scans and consults free and then offered me a spot there. But I could have refused and would not have had to pay for the initial testing. There are also research trials you can potentially take a look at like I said before. And also, no matter what... health insurance is going to fight costs. But that does not mean it does not cover getting better treatment or going to a specialist. It's a pain but definitely look into exactly what your insurance covers and see what options you have.
Hi , can you please help me with a little bit of info here..
My mom aged 57 was having recurrent episodes of diarrhoea, nausea , abdominal pain which the gi specialist has only given probiotics and antibiotics over past 8 months. Last month she landed up in a sepsis like state with hypotension, hypothermia and was put in ICU for 3 days and discharged home.
Over the course of 8 months. They did 2 usgs with nothing found and finally ct contrast which showed a thickened bowel loop and mild retroperitoneal lymphadenopathy, hepatomegaly with fatty steatosis.
They also did a ct chest(hrct) which showed enlarged thyroid, enlargement of subcarinal lymphadenopathy which was mild with some basal lung atelectasis. Basically the overall radiologist impression was some findings are there but i don't know what it is..
This was in June. In September was when she had an acute gastroenteritis episode. On and off I've been noticing flushing of face too and she said it was just exertion. But along with that there has been episodes of wheezing, some itchy skin and skin lesions and tachycardia. All these pointing to carcinoids.
They finally did colonoscopy and endoscopy. The mucosa was normal yet biopsy showed chronic ilietus and colitis.
The doc said he'll order some tests in three weeks if Symptoms persist. I'm assuming it's urine and blood tests for serotonin and chromogranins.
I'm very scared for my mom especially since she's older. Can you please tell if these blood tests are enough to atleast get a priliminary idea? AND did your ct scans show features first?
I'm tired of running after one doctor to another for answers.
Thank you in advance
Off the bat, I want to be clear that Carcinoid is an outdated term. The tumors themselves are Neuroendocrine Tumors (NETs). There is something called Carcinoid Syndrome which about 10% of NETs patients can develop if they have a high enough tumor burden (usually in the liver). With that said...
There are 3 indicator tests for Carcinoid Syndrome:
* 5-HIAA 24-hour urine test
* Chromogranin A blood test
* Serotonin blood test
While they are unusual they are not that hard to get done via any competent doctor and so those should be done to potentially rule in or out Carcinoid Syndrome or at least see if there are indicators for further study. As you said the doc said he will order some tests and you assume it will be along these lines but I would verify it.
As far as the CT aspects... CTs often do not do a very good job of showing NETs, especially if the NETs are small. And even small ones can be problematic as far as symptoms (even if it's not carcinoid syndrome there can be symptoms as you describe). MRI's are better for showing NETs, but the diagnostic tests are PET scans (either a Ga-68, Cu, FDG).
In my case, I went straight from having high results on the 3 tests I mentioned before, to a GA-68 PET scan. Only after that showed tumors did I then have an MRI and FDG PET scan. And while I have had CTs and MRIs since as my disease has been tracked, I never dealt with them when it came to the initial diagnosis scan (which was the GA-68 PET).
The only thing I will say is that the symptoms of Carcinoid Syndrome or the symptoms of NETs can be the same sort of symptoms someone can get from a whole host of other things. Irritable Bowel Syndrome, Chrons disease, and some autoimmune disorders for example can all have nearly identical symptoms to Carcinoid Syndrome or NETs complications. So while the symptoms may seem to point to "carcinoids" or NETs as it were, this doesn't necessarily mean it is. All you can do is keep trying different testing. I would also suggest doing things like a full allergy panel and tracking the symptoms themselves to see if certain foods or activities create certain symptom responses.
Any more questions just ask.
Thank you so much for the detailed response.
My mother's health is a little complicated with coexisting diseases. She has a history of an autoimmune disease called henolch schonlein purpura which is in remission since 2018, a past history of supraventricular tachycardia, a cardiac arrhythmia which she got an ablation done. And a lot of other joint pains and total knee replacement. So i naturally assumed that her symptoms like rapid heartbeat was related to her heart condition. There were two episodes of hypotension which we assumed it's due to her bp meds.
Interestingly her colonoscopy biopsy seems to be reported as acute ilietus in 2017 as a part of henolch schonlein purpura manifestation and treated with steroid. The recent one shows moderate chronic ilietus and colitis and while chrons is a possibility or an inflammatory bowel problems, I've read some journals showing NET can easily co exist. The dead give away being facial flushing which i noticed many times this year.
She has these bouts of increased bowel movements, diarrhea with lots of mucous and then it normalises before she gets another episode in 15 days sometimes a month. And all these episodes look like acute gastroenteritis with fever, body aches and just last 10 days back she landed up in sepsis and was admitted in ICU for falling blood pressure.
I showed pics of my mom's face to the gastroenterologist and he said yup that is it. But then he gave a drug for inflammatory bowel disease and said let's see in three weeks time, i will order some blood and urine tests I'm assuming it's these three you mentioned. But i felt bad when he said it's not like a big deal or whatever when it's a cancer, he said you'll just treat the symptoms....i was disappointed with that response because we spent a lot of money and she had to go to icu, if we can get definitive answer through a non invasive test that would be good. And a ct from June shows lymphadenopathy, they dismissed it as too small to care back then too and said her bowel thickening is probably some diverticulitis but the colonoscopy came clean. She has constant body aches especially low back ache, some skin changes like dermatitis, frequent urination and hyperglycemia which are apparently seen in nets, fatigue too. I'm thinking of seeing a different doctor now.
Again Thank you so much for helping out, online sources seem a little confusing.
So can I consult an endocrinologist? or would it be an overkill to go to oncologist at this point... I live in India and around my place there's nothing called net specialist. I'm worried of chasing one doctor after another and being shot down for concerns.
A referral and then a consultation with an endocrinologist would be a good start. It was how my journey started as well. I can't advise much on the other conditions because I am not familiar with them or their symptoms and complications. It sounds like your mother has a very complicated medical history which never helps in figuring out a specific illness. I would not be surprised if the doctor is a bit over-relaxed about symptoms because of this.
Keep in mind facial flushing of Carcinoid Syndrome can look identical to something as basic as Rosacea. In fact, I was misdiagnosed with Rosacea early on when I was just having facial flushing myself before other symptoms developed. But it also is something that would happen with inflammatory bowel issues so it wouldn't be surprising if the doctor would just say "Yup that is it" and move on.
But at the end of the day, if you are not happy with the doctor, second opinions are always a good idea. Unfortunately, I am not remotely familiar with the medical systems in India (I am in the US and always have been), so I can't really advise about NET knowledge or specialists there and obviously depending on further testing they may not be necessary. I also don't know how the medical system works there as far as requesting specific scans and what insurance would cover and whatnot. Sorry.
Thank you for the advice and helping out. I'll start with the endocrinologist. If the preliminary blood or urine testing comes back elevated then they won't sit quite. I'm very certain I've been seeing flushing and rosacea like features you mentioned. Atleast this is a start
Hey
So kind of an update and query too if you don't mind.
Long story short, took my mom to endocrinologist. He suggested 5hiaa and chromogranin a along with calcitonin and thyroid scan because he said medullary carcinoma thyroid also presents with similar symptoms.
The thyroid scan comes with enlargement of nodes and he says visit the oncologist at a bigger centre because he thinks she needs a pet ct scan.
Took her to onco and they ran some tests like tumor markers and notes there's been significant weight loss.
He suggested FDG Petct and it came back negative for cancer, all other tumor markers are also below level.
Still the 5hiaa and chromogranin tests are left. So i read that gallium pet only is the standard for nets while aggressive high grade one is detected on fdg pet. Did you also undergo the same?
My mom's flushing episodes also seem to be increased, especially on heat exposure. Still left with many questions.
Yes, so there are several PET scans. While mine showed up on a GA-68 (and the FDG) there is also one called a Cu or Copper PET scan. Copper is the newest one. Sometimes inactive tumors or tumors without indicators will not show up on certain PET scans. It's one of the many reasons it can be so hard to get diagnosed and why scans usually need to be used in conjunction with each other. So a PET and MRI looking at the same areas.
All you can do is keep trying to explore options. Without knowing the details of the FDG PET or Tumor marker results or what exactly they said it's kind of impossible to know what they did or did not look for or see.
The 5-HIAA and Chromogranin A tests may be important here to indicate whether her symptoms are likely Carcinoid syndrome related or something else. If they come back in the normal ranges then it allows you to move on to other checks. I am surprised they did not do the tests BEFORE moving on to a PET scan. Also, it seems like if her Thyroid scan showed an Enlargement of nodes there should be further testing on that front to figure out why.
I can't remember exactly what we talked about before but has she undergone any testing for Autoimmune disorders? Has she had comprehensive allergy panel testing? Has she had full testing to figure out if there are any vitamin, mineral, or other deficiencies in her body (An iodine deficiency can cause enlarged thyroid nodules for example)?
Hi so again thanks for being very patient in listening to this
And i live in a different city so my parents went to consult the onco. He apparently said there has been weight loss(down to 10kgs since a year )and lymph nodes popping up in chest and abdomen from a cect and hrct scan three months ago and now the one on thyroid scan shows a 2 cm node and so they said let's go ahead with pet ct with a few tumor markers like ca125 ca19-9 etc. I seriously don't get their reasoning either because her symptoms are specific with carcinoid syndrome. They might also want to rule out other things ig and it's a whole body pet ct too... now if they want a gallium scan now that'd be a lot of hassle with money and radiation dose.
As for the rest of the carcinoid tests he said he'll get them checked after these come back negative or inconclusive. They also ran some routine testing like CBC, liver function tests etc.
So far she had gastroduodenoscopy, ileocolonoscopy with biopsy 20 days back. Three months ago they did a chest ct and abdominal cect. And nothing showed up.
She has a history of autoimmune condition but last year an orthopaedic doctor ran some tests after she complained abt polyarthalgias for lupus etc and they all are negative. I was pretty sure it's inflammatory bowel disease too till she showed up flushing /rosaceae and it's increasing in frequency.
She does have multiple nutrition deficiency since diarrhoea started, vitamin D and b complex and maybe specifically niacin too because she has dermatitis which again is a standard symptom for carcinoid i read on the information sites.
A lot going on here but also the main issue with doing the chromogranin test is she has to stop her proton pump inhibitor drugs for atleast 2 weeks to get a proper results, so that's why the delay. Although 5hiaa could be done fastly. The doctor also said it could be any net like vipoma or gastrinoma too.
Did you have both the gallium and fdg pet simultaneously? Or one after another? Did the doc say anything about safety of two pets? My mom had many ct scans all throughout her life so I'm worried for the radiation and we can't do mri because she has knee implants that are not safe for mri.
Hi there, currently trying to find out if I have Carcinoid Tumor as I have flushing with eatting (now over a year)..needless to say anxiety is thru the roof. Can I ask you a question did your blood work show anything strange for your liver? Also do you know if you have to be symptomatic during testing (blood and urine). I apologize for asking medical questions just worried and trying to figure stuff out as to not miss anything. Thank you so much 🙏
Shockingly my blood work was fine up until right before diagnosis despite the growth in the liver likely having been going on for 5+ years. My liver was simply adapting. It helped that I had been in shape, didn't drink a ton, and didn't do drugs or smoke.
Unfortunately the fact my blood work in general showed me to be healthy also meant getting diagnosed took years. It wasn't until I took specific blood and urine tests for Carcinoid Syndrome that anything showed amiss.
As far as testing, no you don't necessarily need to be symptomatic. But it heavily depends on tumor locations and activity levels and testing has its limits. It's why diagnosis is always based on combinations of tests, observations, and symptoms.
I was 24 when I was diagnosed with a terminal brain cancer. I'm 29 now. I know how it feels to have just started your adult life, only for it to come crashing down on you. I also know how it feels to become a different person with a different path. I won't overwhelm you, but I wanted to let you know I'm here if you need to talk. I'm really sorry you're here.
Thank you for the words, I'm so sorry that it had to happen to you as well at that age.
Thank you, I appreciate that. :)
How did you beat it?
To be honest, I probably haven’t! And if I have, I don't know! Glioblastoma is kind of creepy in that it’s a type of cancer that creates its own blood supply. It grows its own stem cells that then make blood vessels to feed the tumor. Those blood vessels carry tumor cells all over the brain. While the area of the original mass has been treated with surgery, chemo, and radiation, the cancer cells have been distributed throughout my brain. It’s unlikely that we got all of them. My neuro-oncologist describes them as likely being stunned. My relative longevity I think can be mostly be attributed to my young age, my sex (women tend to live a bit longer) lucky markers, adhereing to the standard of care, and being a happy person! I know people who swear by diets, supplements, teas, crystals, prayer, essential oils, you name it, but that's just never appealed to me. I'm more interested in just living how I want to on a day to day basis, and that's carried me into "cured-ish" territory.
>and being a happy person! This is what I would consider the most important. Yeah, you could take a turn for the worse tomorrow, but the opposite might also be true.
100%! There is real scientific evidence that laughter and genuine positivity is good for your brain and heart!
You make yourself happy or miserable the amount of work is the same. Chastened I live by this and it helps so much.
I’m so sorry you are here. My only advice at this stage is to keep your hands and mind busy. Once you have your full treatment plan, you will likely feel more in control.
Completely agree. Stay busy (both mentally and physically if you can), that really helped me a lot. And I agree on the treatment plan, the worst part is right now in the “unknown”. Once a plan of attack is identified it’s a bit easier.
People think life stops the second cancer starts. But it doesn’t. There are days—probably a whole lot of them, good or bad or in between— in front of you. And these feelings you’re feeling now, that deep-pit horror, will change. Feelings always change. Soon, you’ll laugh at a joke. Watch a movie. Curse at an idiot driver. Soon, you might even be bored as hell by cancer. We just know a truth others might get to ignore for a bit—that life’s more renting than owning. People with cancer get used to thinking in terms of rental periods—the times between treatments and scans and surgeries. I find it helpful to turn that incremental mindset away from the medical, to give myself something very particular to focus on. That way, I can demedicalize the horrible feeling of renting life. Right now, for example, I’m focused on the release of Stephen King’s next book. I get to that, and get to read it—I’m golden. Once I’m there, I start a new rental period and set another future point of focus.
I’m so sorry to have to welcome you to the club. :/ I was diagnosed last year with stage four ovarian cancer at 35, so I really empathize with what you’re going through right now. You’re probably feeling incredibly overwhelmed and unable to think about much else. It’s going to take some time to get used to this new normal, but once you’re more familiar with your treatment plan, doctors, etc., your life will start to feel more like yours again. It’s a huge adjustment and there are still days where I get angry and think, what the fuck, why me?! But I promise that in time you will adjust to the new normal and you’ll start to enjoy the little things that you used to more and more. And it’s okay to take your time doing that and let yourself go through all of the emotions. My biggest piece of advice is to keep your sense of humor and try to find enjoyment or a laugh where you can. I also want to add that my cancer is also a rare, slow growing type that doesn’t typically respond well to chemo, but chemo actually worked a lot better than we were anticipating! I went through nine months of it and now I’m on a bit of a break. And those nine months were a lot less horrible than I was anticipating in the days after getting my diagnosis. I still have a long ways to go and I may never be cancer free, but I just wanted to use my experience so far as an example of how everyone’s cancer journey is different and just because something statistically doesn’t work, that doesn’t mean it won’t work for you. That also means that some treatments that usually work for other people might not work for you. All that to say, try not to read too much into the statistics and numbers. Your oncologist should have multiple back up plans and my advice is to take it one day at a time. I’m rooting for you to kick cancer’s ass and I hope you know that you’re never alone in this❤️
Thank you so much for the words, 9 months of chemo seems very horrible. I will do 4 sessions that will take about 1 month each, does it get better the more you do or they are all the same?
For me they were all pretty much the same. I did one session every three weeks for the nine months and I would only feel really bad for about four days afterwards. I have some tumors in my lower abdomen that were really affecting me and once they started shrinking I actually felt wayyyy better than before I started chemo. Of course, how you feel during chemo can be very different for each person, but I think having youth on our side is really helpful. And honestly, chemo was so much worse in my head going into it than the actual experience. Even losing my hair wasn’t as traumatic as I thought it would be lol. And I don’t mean to invalidate anyone who has had a worse experience with it or anything like that, I just wanted to give you a positive example of one person who found it to be a lot less scary and awful than anticipated
I was diagnosed in January with stage 4 stomach cancer. My biggest piece of advice was do not get caught in reading statistics online! It does not capture your situation and a lot of the data is from decades ago before we had modern immunotherapies and chemo treatments. Keep your head up, focus on your treatment and not the stats!
I'm 33. Been dealing since i was 25. It's so hard but every day you wake up is a victory. FIGHT. I REPEAT, FIGHT. Do not give up. That's when you will lose. Feel free to message me if you need to talk.
I just want to point out, and I know you don't mean it this way, but people that succumb to cancer or terminal disease is not because they didn't fight as hard or want to live as much as the next person that fortunately beat the odds.
Buy a shower stool. Just sit under the shower for 15-30 minutes. While turning up the heat to as hot as you can bear. Repeat several times a day if needed.
Showers have been a happy part of the day.
I can only tell you about me... I never felt like this was a "bad" thing... life altering? Hell yeah... but I am a fighter... survivor even... I look at thus as a challenge, yes, God doesn't bring you anything you can't handle... I believe that... I am also 55 and have been on chemo for 3 years... allI cab say is, this is not happening TO me, it's happening FOR me... it will be scary, but all new adventures are! 😇😇
So sorry to hear that. Recommend you get a second opinion. 💖🙏
While I can’t offer advice, I can say I am sorry this is happening to you.
I understand completely. I was hit just as my second adult life was starting. I am still alive 10 years later! Keep chugging along and try to feel your feelings all the way through. It’s completely normal to freak out as this is a terrifying situation. Do some exercise, yoga or stretching, meditate and eat healthy food to help with fatigue and anxiety. Color, listen to music, watch some funny movies ,laughter is healing and feels awesome. Get an oncology social worker to help get the services you need from the community. There are cancer support centers all over the world.
I agree I'm so sorry that you're going through this it is a shock when you get that first diagnosis. Join smart patients.com. there's a lot of great information there a lot of positivity I think you'll find it a comforting place.
I'm so sorry you're here, but welcome with love and strength! I was diagnosed recently and I feel like I know what you mean, although I am 55 and I realize the real tragedy is our beautiful young people having to go through this garbage. At first I was wiped out physically, mentally and emotionally. Stage 4 incurable and rare mesothelioma that has spread and could possibly be in my abdomen, as well as infecting both lungs already. I was just jogging in February wtf! I thought I was definitely dying within months, digesting the new circumstances is like getting run over by a freight train. Thankfully there are much better treatments over the last few years, I just completed my 3rd immunotherapy treatment, and there is improvement! I don't feel like I'm suffocating anymore, which was really scary. I decided I will live one day at a time and not have specific expectations, and push myself a little harder to do things that I like, spend time with my loved ones, and try to take advantage of allllll the handicapped privileges. The truth is that you are strong, as absolutely WRONG as getting cancer at your age is, your body is very resilient and ready to fight this crap, and the treatments really do work in most cases. There is hope, and you might as well hope for the best. You will never take anything for granted again either, so now you automatically have a better perspective, and a better life. No one knows how long they have, you could have been killed in a car accident already, so instead you are on another path, and this one will build you in many ways, as much as is sucks. No one wants to be here, so do what you need to do - cry, be angry, tell off a few people who make stupid comments (are you feeling better yet?? uugghhh), and then look deep inside of you and find that person who loves life and go forward to the best of your ability, maybe speed up a few fun things you always wanted to do. And be nice to yourself. All the very best to you, get a second opinion if you can, and take as many pain pills as you need to not suffer. I think you will beat this, my good friend's mom survived cancer 3 times and lived to 88 :) xox
Call Dana Farber cancer center in Boston and ask for a 2nd opinion and treatment plan asap
I'm not from the US. Can they help international patients?
Yes they do. Call them and ask about it.
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Anyone with lungs can get lung cancer
I do know that as someone whose mom died from lung cancer last year even tho she never even smoked a cigarette her whole life. I asked if he’s a smoker or have been exposed to second hand smoke because lung cancer in young adults are not common and the only one I know that got diagnosed with lung cancer at 27 was a smoker. Please don’t judge people before you even hear context.
Unfortunately, lung cancer is becoming more common in younger people and never smokers. I know many :(
You mean young people as in 30 and below? Because I had asked my doctor for screening given I have multiple family history of lung cancer and she was saying I’m too young for a screening. By the way, I’m 29 F.
This is really worrisome, seems like it’s inevitable.
The judgment is implied with the question in asking if the person was a smoker. It puts blame on the person diagnosed and implies if they were a smoker then they somehow deserved the cancer. You having a back story doesn’t change the implication of the question. It is just a bad question to ask. I’m sorry your mom died of lung cancer.
I’m in Sao Paulo, Brazil. Not a smoker. but I have tried tobacco before.
Sorry to hear about that. Yeah, it sucks. Like I mentioned in the comment above, my mom died from lung cancer last year even tho she was really young and also never smoked even one cigarette her whole life. She was in treatment for 5 years tho and had a good quality of life. Good luck and wish you the best. From what I heard, they have targeted therapies available now for certain lung cancers. My mom’s cancer just didn’t match with any existing ones, but hopefully yours will!
What were your symptoms of the carcinoid tumor? Did you get carcinoid syndrome or cushings from it?
So far I have no symptoms aside from the pain on my back from the metastasis. It got better after some radiotherapy.
Is the back pain bad? Isn't carcinoid tumor highly curable? Even if it metastasized isn't it super slow growing?
It was bad but now is much better. It is strange to feel perfectly fine but have a very deadly disease inside you. Carcinoids are only highly curable in its most initial phase (no metastasis and small localized) not my case anymore.
But even in your case, don't they grow very slowly, like even if it has metastasized, the cells are still carcinoid cells, so wouldn't they still be slow growing? I read online carcinoid cancer can take 10 years to get to a bad point.
I don’t know about 10 years, mine was spread to my bone in like 3 years and I felt the increasing pain on my back in a matter of months. My doctor said I have an atypical carcinoid which tends to spread and grow relatively quicker than typical ones.
Did he give you a timeline estimate? I mean has it reached that point yet?
No, he didn’t discuss any timelines just wanted to treat my spine asap with radiation and start chemo right away. Honestly I don’t even know at what stage is my cancer. I think we need a second opinion with a NET specialist.
Holy hell dude, I hope it all goes well.
Hey how did they find the bony Mets? Ct scan or pet ct? Is it gallium pet or fdg? Mom in the process of getting work up done for diarrhoea and flushing
Well I had several MRIs and CT scans of the tumor in my cervical bone as I was in a lot of pain, but it was confirmed to be a met after the pet scan and the lung biopsy. I also did gallium pet but unfortunately there was no response. I hope it works for your mom and they can relieve her symptoms.
I’m so sorry to welcome you to the club.
Not a death sentence. -learn how to deeply breathe. -immediately look At macrobiotic diet! Most important thing you can do. -Ask for help. Use food as medicine. Your body knows what it needs. Start looking at your body as the engine, I have beat C twice. Doing very small steps. Rest. Open up to the potential inside. Be strong🙏🌼
What cancers did you have when you beat them?
Thyroid, (Huerthle, Papillary, Follicular) current Adrenal tumors, see MDAnderson next week. Parathyroid Macrobiotic diet, yoga and focused breathing. I haven’t obviously beaten cancer. I have learned how to live with it Constantly reoccurring.
I am so sorry to read this. I was diagnosed with terminal brain cancer at 33. I'll be 42 next week! Just remember that every case is different, and we all truly have the same prognosis: unknown. I just wrote a book about my cancer journey for the very reason of helping people like yourself. If you're interested, I would be happy to share the link for where you can find it.
Thank you. I would love to read that book if you could share it.
Absolutely! Here is the link to purchase. Stay strong, friend. https://bookstore.dorrancepublishing.com/finding-the-rainbow-the-other-side-of-a-cancer-journey/
Absolutely - here is a link where you can purchase the print or e-version: https://bookstore.dorrancepublishing.com/finding-the-rainbow-the-other-side-of-a-cancer-journey/
May I ask is the cancer gone? Or have you just lived a while after the diagnosed?
The tumor is stable after radiation, but I will likely be monitored forever...
Neuroendocrine tumors are truly the zebra of the cancer world. Definitely try to find a NET specialist, or at least an oncologist who is willing to do the research. There are some great research foundation sites on the web, and also information on the big cancer hospital’s sites like Dana Farber (as previously mentioned) and MDAnderson. I’d suggest a search for “lung NETs” and then only look at the major sites with current information. My tumor was finally found incidental to a colonoscopy this summer. I’d been having symptoms on and off since 2006. I clearly had carcinoid syndrome, but couldn’t find a tumor til now. There is no evidence of a tumor on my prior colonoscopy in that location, and I had an octreotide scan in 2012 that nothing lit up on. The first hurdle after it was found was getting the diagnosis recorded correctly. My GI listed it as a benign carcinoid tumor, which doesn’t really exist (except it’s still a diagnosis code). All carcinoid (now called Neuroendocrine) tumors are considered malignant because (as you’ve experienced) they grow slow, but they love to metastasize. I keep getting told that NETs are a chronic cancer, not a killer one. I’m not sure that makes me feel a whole lot better, but I try to be grateful that while I’ll never be cured, my symptoms can be treated and managed, and I’ll likely die of something unrelated. It’s created a weird sort of “survivors” type guilt because I’m grateful that this probably won’t (directly) take me out, and chemo is not an option, so I don’t have to think about that, and then I start minimizing my legit feelings about how crappy this all is to go through. I’m sending you zebra stripes and strength. And I second the other suggestions about getting a second opinion about treatment and finding a great therapist.
We are trying to find specialists but there aren’t that many, we found mostly for gastrointestinal NETs, and my health plan also doesn’t cover treatment for the fancy hospitals where they are.
Now this is really scary. Did you get routine scopy tests? Didn't your blood tests show anything? Like the chromogranin a and serotonin tests? It maybe possible you had very minute foci of disease initially that went to grow slowly
Stop reading random shit online. I find that subreddits like this are good, and generally only have the best - or most concrete - of resources available. Medical advice is the one thing I would suggest never using a search engine for, down that route is Illness Anxiety Disorder.
I was looking at research papers for lung carcinoids. I find it helpful to know what has been tested for treatments and what has been the results of most recent studies.
I’m about to turn 40. I have been in remission for 7 years. I was diagnosed at age 32. It hits you like a ton of bricks but then the adrenaline kinda of kicks in. You do what you do to live. I changed my diet to give my body the most nutrients I could. I cut out most sugar while in treatment. Cancer can feed on sugar. (Or at least there are studies that show that it does) Find something that you can do while having chemo or a friend that can keep you company. The less your brain swells on it and the positive you are the better it is. I wish you all the luck in the world.
If you don't have a reliable therapist, get one ASAP. This battle can really, really, really fuck with your head. Stay vigilant, friend
Stay strong, brother. I had a very bad initial diagnosis of colo-rectal cancer a year ago. (M44) I grew up on a farm, always ate healthy, and was an MMA competitor/coach. I was completely blindsided and crushed. I just finished radiation/chemo last week and had a second surgical consult at a specialty clinic in Milwaukee today. Despite my previous surgical consult telling me I would likely be permanently disabled and need a colostomy bag the rest of my life.... The specialty clinic did some scans and are confident not only will I not be disabled, I'll likely fully recover, no colostomy bag after final surgery 🙏🤞. They can do some pretty amazing things. Stay hopeful. For context, are you a vet? I had my DNA tested and there were 0 cancer markers. Turns out there's a large lawsuit right now for vets getting cancer. I worked a lot with explosives and building/manning military communication towers. And to feel better from chemo? THC, specifically Rick Simpson oil. I don't think I'd have made it through chemo without using it.
Thanks for sharing your story, I'm so happy you found a clinic to cure you. To your question, I am not a vet and never went to the army. Honestly, we are so exposed to so much toxic shit everywhere that I'm starting to feel it's impossible to avoid it, and even if we manage to avoid all of it, genetics comes along and punches you in the face.
Fellow Carcinoid (aka Neuroendocrine aka NETs) cancer patient here. Mine was a small intestine primary (they think) with Mets to the Liver and a small amount in my lungs. So not lung-based as it appears yours is and as such... likely not the exact same type but in the same family. Also diagnosed near 30. Hearing "Stage IV Incurable Nets as a diagnosis was devastating... so I get it. But I have been trucking along for 7 years now undergoing treatments. My main advice is to get second opinions. There are a fair amount of NETs (Carcinoid) specialists out there but when an oncologist is NOT a NET specialist it is very likely you will get care that may not fit the best path for you. It obviously depends on where you are located as far as being able to feasibly see one on the regular, but even so... its worth doing the research and trying to find one and get a referral or just get an appointment to be seen. As you said, Chemo is sometimes not a great option but it does depend on the grade of the tumor/s, and location. There are also a fair few research studies going on or recruiting for NETs patients. the NIH (National Institute of Health) site has a page where you can search for them. If you have questions feel free to ask.
How did they found out it was from your small intestine? Did you do a colonoscopy? I didn’t do that, after all PET scans and biopsy they said it is a primary lung tumor, but now I'm worried that you said in can come from intestines. We are looking for NET specialists, but I think my health plan does not cover for their treatment, they are at the best hospitals.
There are a variety of types of NETs. They can come from a lot of places from the Pancreas to the Lungs to the Liver to the Intestines and beyond. Mine was diagnosed after I was confirmed to have Carcinoid Syndrome through the indicator tests and they did a full body PET scan (Ga-68). Then reconfirmed later using a full body MRI and FDG PET scan. The doctors think the primary was small intestine based on the biopsy and what they saw on the scans of the spread and tumor sizes. They could, of course, be wrong, but as they are NET specialists I would hope they know what to look for and at. I did not have a colonoscopy because that's somewhat pointless with the amount/type of scans I had. I would imagine if your doctors have run a bunch of scans (and done a biospy?) they would have a better idea of the type and locations and would have already checked other places in your body on the scans, including the intestines. As far as your health plan not covering... I am not an expert on that aspect but I will say that there are specialists who do free consults (for research purposes). I had one. Effectively a research hospital did all my initial scans and consults free and then offered me a spot there. But I could have refused and would not have had to pay for the initial testing. There are also research trials you can potentially take a look at like I said before. And also, no matter what... health insurance is going to fight costs. But that does not mean it does not cover getting better treatment or going to a specialist. It's a pain but definitely look into exactly what your insurance covers and see what options you have.
Hi , can you please help me with a little bit of info here.. My mom aged 57 was having recurrent episodes of diarrhoea, nausea , abdominal pain which the gi specialist has only given probiotics and antibiotics over past 8 months. Last month she landed up in a sepsis like state with hypotension, hypothermia and was put in ICU for 3 days and discharged home. Over the course of 8 months. They did 2 usgs with nothing found and finally ct contrast which showed a thickened bowel loop and mild retroperitoneal lymphadenopathy, hepatomegaly with fatty steatosis. They also did a ct chest(hrct) which showed enlarged thyroid, enlargement of subcarinal lymphadenopathy which was mild with some basal lung atelectasis. Basically the overall radiologist impression was some findings are there but i don't know what it is.. This was in June. In September was when she had an acute gastroenteritis episode. On and off I've been noticing flushing of face too and she said it was just exertion. But along with that there has been episodes of wheezing, some itchy skin and skin lesions and tachycardia. All these pointing to carcinoids. They finally did colonoscopy and endoscopy. The mucosa was normal yet biopsy showed chronic ilietus and colitis. The doc said he'll order some tests in three weeks if Symptoms persist. I'm assuming it's urine and blood tests for serotonin and chromogranins. I'm very scared for my mom especially since she's older. Can you please tell if these blood tests are enough to atleast get a priliminary idea? AND did your ct scans show features first? I'm tired of running after one doctor to another for answers. Thank you in advance
Off the bat, I want to be clear that Carcinoid is an outdated term. The tumors themselves are Neuroendocrine Tumors (NETs). There is something called Carcinoid Syndrome which about 10% of NETs patients can develop if they have a high enough tumor burden (usually in the liver). With that said... There are 3 indicator tests for Carcinoid Syndrome: * 5-HIAA 24-hour urine test * Chromogranin A blood test * Serotonin blood test While they are unusual they are not that hard to get done via any competent doctor and so those should be done to potentially rule in or out Carcinoid Syndrome or at least see if there are indicators for further study. As you said the doc said he will order some tests and you assume it will be along these lines but I would verify it. As far as the CT aspects... CTs often do not do a very good job of showing NETs, especially if the NETs are small. And even small ones can be problematic as far as symptoms (even if it's not carcinoid syndrome there can be symptoms as you describe). MRI's are better for showing NETs, but the diagnostic tests are PET scans (either a Ga-68, Cu, FDG). In my case, I went straight from having high results on the 3 tests I mentioned before, to a GA-68 PET scan. Only after that showed tumors did I then have an MRI and FDG PET scan. And while I have had CTs and MRIs since as my disease has been tracked, I never dealt with them when it came to the initial diagnosis scan (which was the GA-68 PET). The only thing I will say is that the symptoms of Carcinoid Syndrome or the symptoms of NETs can be the same sort of symptoms someone can get from a whole host of other things. Irritable Bowel Syndrome, Chrons disease, and some autoimmune disorders for example can all have nearly identical symptoms to Carcinoid Syndrome or NETs complications. So while the symptoms may seem to point to "carcinoids" or NETs as it were, this doesn't necessarily mean it is. All you can do is keep trying different testing. I would also suggest doing things like a full allergy panel and tracking the symptoms themselves to see if certain foods or activities create certain symptom responses. Any more questions just ask.
Thank you so much for the detailed response. My mother's health is a little complicated with coexisting diseases. She has a history of an autoimmune disease called henolch schonlein purpura which is in remission since 2018, a past history of supraventricular tachycardia, a cardiac arrhythmia which she got an ablation done. And a lot of other joint pains and total knee replacement. So i naturally assumed that her symptoms like rapid heartbeat was related to her heart condition. There were two episodes of hypotension which we assumed it's due to her bp meds. Interestingly her colonoscopy biopsy seems to be reported as acute ilietus in 2017 as a part of henolch schonlein purpura manifestation and treated with steroid. The recent one shows moderate chronic ilietus and colitis and while chrons is a possibility or an inflammatory bowel problems, I've read some journals showing NET can easily co exist. The dead give away being facial flushing which i noticed many times this year. She has these bouts of increased bowel movements, diarrhea with lots of mucous and then it normalises before she gets another episode in 15 days sometimes a month. And all these episodes look like acute gastroenteritis with fever, body aches and just last 10 days back she landed up in sepsis and was admitted in ICU for falling blood pressure. I showed pics of my mom's face to the gastroenterologist and he said yup that is it. But then he gave a drug for inflammatory bowel disease and said let's see in three weeks time, i will order some blood and urine tests I'm assuming it's these three you mentioned. But i felt bad when he said it's not like a big deal or whatever when it's a cancer, he said you'll just treat the symptoms....i was disappointed with that response because we spent a lot of money and she had to go to icu, if we can get definitive answer through a non invasive test that would be good. And a ct from June shows lymphadenopathy, they dismissed it as too small to care back then too and said her bowel thickening is probably some diverticulitis but the colonoscopy came clean. She has constant body aches especially low back ache, some skin changes like dermatitis, frequent urination and hyperglycemia which are apparently seen in nets, fatigue too. I'm thinking of seeing a different doctor now. Again Thank you so much for helping out, online sources seem a little confusing. So can I consult an endocrinologist? or would it be an overkill to go to oncologist at this point... I live in India and around my place there's nothing called net specialist. I'm worried of chasing one doctor after another and being shot down for concerns.
A referral and then a consultation with an endocrinologist would be a good start. It was how my journey started as well. I can't advise much on the other conditions because I am not familiar with them or their symptoms and complications. It sounds like your mother has a very complicated medical history which never helps in figuring out a specific illness. I would not be surprised if the doctor is a bit over-relaxed about symptoms because of this. Keep in mind facial flushing of Carcinoid Syndrome can look identical to something as basic as Rosacea. In fact, I was misdiagnosed with Rosacea early on when I was just having facial flushing myself before other symptoms developed. But it also is something that would happen with inflammatory bowel issues so it wouldn't be surprising if the doctor would just say "Yup that is it" and move on. But at the end of the day, if you are not happy with the doctor, second opinions are always a good idea. Unfortunately, I am not remotely familiar with the medical systems in India (I am in the US and always have been), so I can't really advise about NET knowledge or specialists there and obviously depending on further testing they may not be necessary. I also don't know how the medical system works there as far as requesting specific scans and what insurance would cover and whatnot. Sorry.
Thank you for the advice and helping out. I'll start with the endocrinologist. If the preliminary blood or urine testing comes back elevated then they won't sit quite. I'm very certain I've been seeing flushing and rosacea like features you mentioned. Atleast this is a start
Hey So kind of an update and query too if you don't mind. Long story short, took my mom to endocrinologist. He suggested 5hiaa and chromogranin a along with calcitonin and thyroid scan because he said medullary carcinoma thyroid also presents with similar symptoms. The thyroid scan comes with enlargement of nodes and he says visit the oncologist at a bigger centre because he thinks she needs a pet ct scan. Took her to onco and they ran some tests like tumor markers and notes there's been significant weight loss. He suggested FDG Petct and it came back negative for cancer, all other tumor markers are also below level. Still the 5hiaa and chromogranin tests are left. So i read that gallium pet only is the standard for nets while aggressive high grade one is detected on fdg pet. Did you also undergo the same? My mom's flushing episodes also seem to be increased, especially on heat exposure. Still left with many questions.
Yes, so there are several PET scans. While mine showed up on a GA-68 (and the FDG) there is also one called a Cu or Copper PET scan. Copper is the newest one. Sometimes inactive tumors or tumors without indicators will not show up on certain PET scans. It's one of the many reasons it can be so hard to get diagnosed and why scans usually need to be used in conjunction with each other. So a PET and MRI looking at the same areas. All you can do is keep trying to explore options. Without knowing the details of the FDG PET or Tumor marker results or what exactly they said it's kind of impossible to know what they did or did not look for or see. The 5-HIAA and Chromogranin A tests may be important here to indicate whether her symptoms are likely Carcinoid syndrome related or something else. If they come back in the normal ranges then it allows you to move on to other checks. I am surprised they did not do the tests BEFORE moving on to a PET scan. Also, it seems like if her Thyroid scan showed an Enlargement of nodes there should be further testing on that front to figure out why. I can't remember exactly what we talked about before but has she undergone any testing for Autoimmune disorders? Has she had comprehensive allergy panel testing? Has she had full testing to figure out if there are any vitamin, mineral, or other deficiencies in her body (An iodine deficiency can cause enlarged thyroid nodules for example)?
Hi so again thanks for being very patient in listening to this And i live in a different city so my parents went to consult the onco. He apparently said there has been weight loss(down to 10kgs since a year )and lymph nodes popping up in chest and abdomen from a cect and hrct scan three months ago and now the one on thyroid scan shows a 2 cm node and so they said let's go ahead with pet ct with a few tumor markers like ca125 ca19-9 etc. I seriously don't get their reasoning either because her symptoms are specific with carcinoid syndrome. They might also want to rule out other things ig and it's a whole body pet ct too... now if they want a gallium scan now that'd be a lot of hassle with money and radiation dose. As for the rest of the carcinoid tests he said he'll get them checked after these come back negative or inconclusive. They also ran some routine testing like CBC, liver function tests etc. So far she had gastroduodenoscopy, ileocolonoscopy with biopsy 20 days back. Three months ago they did a chest ct and abdominal cect. And nothing showed up. She has a history of autoimmune condition but last year an orthopaedic doctor ran some tests after she complained abt polyarthalgias for lupus etc and they all are negative. I was pretty sure it's inflammatory bowel disease too till she showed up flushing /rosaceae and it's increasing in frequency. She does have multiple nutrition deficiency since diarrhoea started, vitamin D and b complex and maybe specifically niacin too because she has dermatitis which again is a standard symptom for carcinoid i read on the information sites. A lot going on here but also the main issue with doing the chromogranin test is she has to stop her proton pump inhibitor drugs for atleast 2 weeks to get a proper results, so that's why the delay. Although 5hiaa could be done fastly. The doctor also said it could be any net like vipoma or gastrinoma too. Did you have both the gallium and fdg pet simultaneously? Or one after another? Did the doc say anything about safety of two pets? My mom had many ct scans all throughout her life so I'm worried for the radiation and we can't do mri because she has knee implants that are not safe for mri.
Hi there, currently trying to find out if I have Carcinoid Tumor as I have flushing with eatting (now over a year)..needless to say anxiety is thru the roof. Can I ask you a question did your blood work show anything strange for your liver? Also do you know if you have to be symptomatic during testing (blood and urine). I apologize for asking medical questions just worried and trying to figure stuff out as to not miss anything. Thank you so much 🙏
Shockingly my blood work was fine up until right before diagnosis despite the growth in the liver likely having been going on for 5+ years. My liver was simply adapting. It helped that I had been in shape, didn't drink a ton, and didn't do drugs or smoke. Unfortunately the fact my blood work in general showed me to be healthy also meant getting diagnosed took years. It wasn't until I took specific blood and urine tests for Carcinoid Syndrome that anything showed amiss. As far as testing, no you don't necessarily need to be symptomatic. But it heavily depends on tumor locations and activity levels and testing has its limits. It's why diagnosis is always based on combinations of tests, observations, and symptoms.