Carcinoid Tumor

So my GI Dr ran some weird blood tests and I’m not sure why. He ran a Chromagranin A blood test and my results came back abnormally high. That was about 4 months ago. He told me that the number wasn’t good, but he “wanted it to be higher to convince himself that I actually have Carcinoid Tumors.” I work in the medical field and I’ve never heard a Dr. say that.

So a month passed and he has me do the blood test again, the results are even higher, but the urine test comes back inconclusive so they have me swallow one of those camera pills. It’s a hot mess aand doesn’t work correctly, so he has me take another blood test.

The blood test comes back even higher. At this point my Chromagranin A levels are raising at a rate of 20% per month that goes by. He calls me and says it’s still high but he wants to wait 3 months and then have me redo the blood test. It is well known I have a tumor on my pituitary gland and in my lung.

At what point is it time to do something about it? If it’s increasing at a rate of 20% per month and my GI Dr isn’t going to do anything about it but wait, who do I go to that will take this seriously and not wait until it’s spread to my lymphnoids and there’s nothing I can do about it? I’m so frustrated!

Michelle

#CarcinoidTumor

“According to the pathology report your daughter has a rare tumor called carcinoid.” I heard the surgeon telling my mom. “Unfortunately, her cortisol levels did not go to zero like we expected, do you know what that means?” “Yes! I know what that means, I am a nurse and a nursing educator I teach this stuff.” I heard my mom explain in a calm manner.

While all this is going on I am sitting on my not so comfortable wheelchair in my plain white walled hospital room in front of the mini flat screen TV watching the Sci-Fi channel. I was just one week post op from my second major surgery, I had a PICC line in my arm for nutrition, medication, and IV fluids. I had an NG tube going up my nose to my stomach to suck out stomach acid to give my stomach a break from my emergency stomach surgery and I just gotten my chest tube removed from my first, but not my last lung surgery.

“What the heck is carcinoid?” I thought “I guess I do not have to worry about it since this last surgery should have worked.” Oh, how wrong I was and little did I know my battle was not finished. As I sat relieved, oblivious to the full situation; I heard the IV machines beeping and the smell of antiseptic and TPN, which smells like vitamins, strong in the air. “God, I will not miss any of this I cannot wait to be discharged.” Then at that very moment the surgeon exclaims “Your daughter is going to need another surgery.” “What! Why? I thought Wasn’t the last surgery supposed to be a success, they said I only had one tumor”

I started bawling my eyes out and my mom walked across the room hugging and telling me it will be ok. After I started bawling my eyes out the surgeon had the audacity to say, “Do not cry, why are you crying?” “You got to be kidding me, I think, do you not know the hell I just went through and you just told me the surgery failed and I need another one and you just told me not to cry!”

I was angry, angry that the surgeon had the audacity to say that to a thirteen-year-old girl who went through hell and back, angry the surgery failed, angry because I will not be able to go home, and most or all angry that this happened to me, why out of all people did this happen to me? My mom gave him a dirty look and he seemed to get the message because he stood up really fast walked to the door and said, “I am sorry, but you are going to need another surgery.” And left.

All I can remember was the hell I went through with my surgeries. My first surgery was an emergency surgery which in itself is traumatic. I had a perforated ulcer, which took them two days to catch because the doctors refuse to believe me and the amount of pain I was in. I remember waking up in the actual operating room. I woke up with the breathing tube still in me and still hooked up to the heart monitor. I was still covered with a blue sheet, I still had a hair net on me, and my arms were still strapped down. I remember seeing the monitors. My heart rate was 150 and my blood pressure was 160/90. I looked to my right and see the surgeons and nurses still in their blue masks, blue gowns, blue hair nets, and plastic goggles. I hear one of the surgeons breathe a sigh of relief and say, “thank God she woke up!” “Wait, what!?, I think, why is he saying that, was I dying?” I think. One of nurses walked over and said, “It’s ok sweetie go back to sleep.”

I woke up again, but this time I was in the ICU. I was lying in a hospital bed dressed in a normal hospital gown with an oxygen mask. The ICU was very noisy, full of crying children and different noises from different machines. Each room consisted of multiple beds separated with white sheets. No windows or color what so ever.

Six days later they took me into the operating room again to remove the tumor. I ended up needing a blood transfusion during that surgery due to a large amount of blood loss. I spent four days after that surgery in the same ICU room with blood pressure in the 200’s. I honestly thought I was going to die because I felt so weak and sick, I couldn’t stay awake for more than two minutes, and I could not even sit up on my own. I had to have someone actually hold me up. I remember my mom having to sponge bathe me and wash my hair in the hospital bed.

Eventually, doctors were able to stabilize my blood pressure and I was able to move to a regular hospital room. The very same room I received the bad news in.

Flash forward present day. After the surgeon left and I finished crying I asked my mom “Why do I need another surgery, wasn’t this surgery supposed to be the cure?” “Apparently, you have more tumors somewhere in your body.” I let that sink in and asked “Well, what the heck is a #CarcinoidTumor?” My mom explained it the best she could, she told me this “well carcinoid tumor also called Neo endocrine #Cancer is a rare cancer that is considered very bizarre and not normal because it produces cortisol, ACTH, and causes Cushing’s Syndrome.”

“Ok then why can’t they do chemotherapy instead of surgery?” I asked because in my mind I would suffer less with chemotherapy than surgery. My mom very sternly told me “You would suffer more with chemotherapy and might possibly get sicker and possibly die you know this and you just had two very traumatic surgeries ok, so do not let that cloud your judgement.”

“Fine, I think, I will continue to fight and I will move forward with treatment.” In the back of my mind I knew surgery was a better option than chemotherapy.

In the end surgeons ended up doing one final surgery removing the lower lobe of my right lung and lymph nodes to the right lung and luckily it was a much better experience than my first two surgeries. Unfortunately, that surgery also was not a cure. I now have Carcinoid Syndrome and I have to do octreotide injections every four weeks. I am closely monitored by my oncologist and endocrinologist, even though every blood test, scan, and appointment give me #Anxiety I learned to breath and tell myself everything will be ok and this zebra warrior can conquer anything.

For everyone currently battling cancer or in remission keep fighting and keep being the amazing warrior you are!

Hi All. I have NF1 and I am a 32 year old female. I would like to know if anyone has issues with their heart rate and breathing? I have to take medicine for both and I never had to take it before. I think there may be something more wrong with me. I am waiting to hear back from my doctor but it seems my question does not really matter. So all I do is just stressed out. I feel like I could have a carcinoid tumor since those with NF can develop them and I feel like it could be on my lungs. I am always coughing and never had this issue before. I am not liking life now.
#NeurofibromatosisType1