Connect
Carcinoid Cancer and working
Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had an immediate CT scan which showed a large mass in my small intestine. Two weeks later over a foot of bowel, part of the colon, and left ovary removed along with lymph nodes and tissue. Three months later I needed a colonoscopy then three months after that a full hysterectomy. CT scans and MRI’s prove I still have tumors in tissue and tiny “spots” in my liver too small to grade as tumors at this time. I am on Sandostatin every 28 days and seem to tolerate it well. My booty hurts for about 2 weeks but is tolerable. I am usually tired for a couple of days and do suffer from extreme diarrhea on and off. I live on the tip of the thumb in Michigan and don’t know anyone to speak with regarding this cancer. I applied for SS benefits and was turned down, not eligible, not old enough, not enough work credit, blah blah blah. The only other thing I can think of is to go back to work to help with our finacial situation before we have to file bankruptcy (which I do not want to do). I also suffer from Fibromyalgia and have not worked outside the home for about 7 years. Any insite would be appreciated!
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
So sorry. There is a typo in my Sunday reply. It should have read the rectal carcinoid returned in 10 years, not 20. I cannot figure out to correct my comment.
-
Like -
Helpful -
Hug
1 Reaction@mgreene
No problem regarding the error in the date - I understood what you were trying to express.
Carcinoids often referred to as NET represent a slow growing malignancy. Many of our members have been told (at one time or another) that it is not cancer. Unfortunately, that is not the case. The slow growing nature of it gives us a much longer life expectancy as a general rule, however, often the lack of symptoms keep us from discovering it until it has metastasized. Many of our Members were not diagnosed until liver mets showed up.
Yes, I am never "lulled" into the "don't worry about it" message. Twice I had two good GI doctors tell me that after 10 years since my last carcinoid, I should not have to look for another. Well 11 years after my last surgery a new one surfaced. It is best to stay with doctors who are experts in this type of cancer. Have you mentioned to your doctor about the "diarrhea and heavy, unexplained sweating"? If not, it would be a good idea. How often do you have these episodes? Do you have annual blood work for Serotonin levels and the 24 hour urine test? I have these done annually.
I am so pleased that you travel to see a specialist. That is really important. Our carcinoid situations are quite similar, just in different physical locations.
I look forward to hearing from you again.
Teresa
Seek help from a Carcinoid Specialist. It is now referred to as NETS (Neuroendocrine Cancer) Call the Carcinoid Foundation for help finding one closest to you. There are not many Specialists-but you will benefit by traveling to see one. A new drug has recently (end of January 2018)been approved. Don't delay-appointments are not fast.
-
Like -
Helpful -
Hug
1 ReactionThe nurses may be giving it to you incorrectly. If you get a lump apply heat. It has to go into a muscle. Talk to your doctor about it. Plus get in a system - even months right cheek---odd months left cheek. Every other time it should vary where - which cheek you get the shot. My husband has been getting it for a year and half and only twice did he have a problem. One time it was up too high and he suffered, the doctor said if not given correctly it doesn't do any good. So you see how important this is.
-
Like -
Helpful -
Hug
1 ReactionI am so happy to hear it worked out for you. My local nurse told me there was no sense in having the pain. Continued prayers to you.....
-
Like -
Helpful -
Hug
1 ReactionTeresa and @carcinoid, Dr Anthony told me the 24-hr urine test was not helpful for rectal carcinoid. However, I did have one 3 years ago because my internist said if it had somehow metastacized to lungs or liver, for instance, it would come back positive. I have been told by a local support group widow that a NETS specialist has moved to Dallas from another state. I think to UTSW, which is now a top-ranked cancer hospital, same as MD Anderson. I need to seek him out, I guess. Thank you.
-
Like -
Helpful -
Hug
1 ReactionThat sounds great. Don't delay. There s a new scan called Gallium 68 and just the end of January a new drug called PRRT was just approved for use in the U.S. I wish you the very best and get to see that Specialist ASAP.
-
Like -
Helpful -
Hug
1 Reaction@mgreene
That is good that the 24 hour urine was negative. Do you have the blood serotonin levels checked periodically or is that something that is not used for the rectal carcinoids?
Teresa
Hello @ajnaudra
It has been a while since you first posted about your NET surgery and treatment and I've been thinking about you. I hope that you are adjusting to this diagnosis and learning more about it. Did you contact Dave Vickery for some more information about the support group?
I hope you are feeling better. I would love to hear from you when you have an opportunity to post.
Teresa
Hello,
I have been suffering from terrible vertigo. No understanding why but we think it is from lack of sleep at times which is mostly caused from pain due to fibromyalgia.
I did speak with Dave and received information about the support group, unfortunately it is quite a distance from me. He did give me great info though and was great to talk with someone who has loafs of info and many years of experience.
I would also like to share some wonderful news.... a recent CT scan showed some miraculous results! There were 5 tumors in my live and by divine mercy, there are 2 left!!!! My Oncologist is very happy as well. She said she would like to credit the Sandostatin but cannot say that’s what it was. So for now, I feel it is all the wonderful prayers said on my behalf!
Warm regards to all,
Audra
-
Like -
Helpful -
Hug
2 Reactions