Mayo Clinic Connect
I would like to be in voplved in carcinoid cancer only as that is what I have
Welcome to Connect @amyh2439.
We have a few members in the Connect community who have experience with carcinoid tumors. Please meet @joanney @hopeful33250 @lucci50
Ruth Ann, we look forward to getting to know a bit more about you. When were you diagnosed? How are you doing today?
To amyh2439: I’m so sorry to hear of your carcinoid diagnosis. It is a difficult diagnosis to understand because it is rather rare and even doctors do not always have good info to give you. I’ve had several, all in the duodenal bulb. They have all been removed quite successfully and I’ve had good outcomes. I hope that you will have a similar experience. The important thing about carcinoids is to find a doctor who is experienced in this type of cancer and be diligent in following up with your doctor(s) to be sure that you are carcinoid-free. As they do not show up on regular X-rays or CT scans, special tests and procedures must be done to track them down. Best wishes and stay connected with Mayo Connect. We are all here for each other!
Liked by Colleen Young, Connect Director
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Who are the doctors that you have used???
My last experience (the best yet) I went to U of Michigan. They have a doctor there who removed a small lesion through an endoscopy procedure. U of Michigan also has a doctor who specializes in carcinoids, his name is Del Valle. I have an appointment with him next week. I believe it is important to be connected with a good teaching/research institution when you are dealing with something unique or rare, the hospital in your neighborhood might not be your best choice. It may involve some extra driving but it is worth the time and expense.
I am a new member (aged 84) even though my cancer was discovered in 2007 during an emergency operation for a twisted bowel. Transpired I had a carcinoid tumor which was removed and subsequently my oncologist discovered I still had rogue cells. It was not the end of the world because a treatment existed for this cancer and while not a cure it restricts its development. Every 4 weeks I receive a sandostatin injection and have just received number 100. The outcome for me has been the ability to get on with my life and thereby devote what time I left to my family.
It would be great to hear from others who have carcinoid syndrome.
Liked by mgreene
Yes it is hard to take this and understand all that is going on ,I was just admitted to Hospice as I have COPD also and have bad exacerbations from it and have been hospitalized several times with it so now they have put me in Hospice,I am still wondering though if my tumors I have in my lungs aren’t causing some of my problems but they do not make the effort to find out,I am not capable of having surgery so I am really left hanging with no choices, Good to hear from you ,keep in touch Ruth Ann
My prayers are with you Ruth Ann. When we reach a place where there are no other options we simply have to draw on our faith and trust the goodness of our caregivers to provide us with peace and comfort. I am glad that you are reaching out through Mayo Connect. This is a good place. Blessings to you and keep in touch.
Liked by Colleen Young, Connect Director, Ruth Ann
I was diagnosed in July of 2014 and have been in Hospice now for 2 weeks (at home) but its due to my COPD not my cancer which enables me to continue my sandostatin shots ,I am still learning about Hospice as they have some hard to understand rules .Otherwise doing ok as well as I can!!! lol
I am not able to go any where now because of my condition now and also would not be able to afford it,I also do not have a family that supports me ,they think nothing is wrong with me except for the COPD which they can see when I have trouble breathing ,so it is beyond me to go any where else, Sometimes we have no other choices
thank-you i have been looking for someone that specializes in carcinoid tumors in the michigan area because i live in michigan…i will check out del valle from U of M. thank-you so much!!!
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
I’m also interested in experiences persons with neuroendocrine carcinoid tumor have had.
Hi @derekd and welcome to Connect.
I moved your message to this thread to introduce you to other members who have carcinoid cancer. Please meet @hopeful33250 @lucci50 and @amyh2439. You may also be interested in this discussion https://connect.mayoclinic.org/discussion/has-anyone-used-mayo-clinic-in-rochester-minnesota-for-carcinoid-tumors-the/
Really like your attitude Derek. What side effects (if any) do you have to manage with the sandostatin injections?
Ralph: If you live in Michigan you might already be aware of a Carcinoid Support Group. They are on the western part of the state, Grand Rapids. So far, I’ve only been in contact with them though email and phone calls, since I’m in SE Michigan, however, the leader of the group has a lot of personal experience with carcinoids and has great info that he can send you. He was the one who told me that many of their members have seen Dr. Del Valle , at U of M. Here is the website to find all of the carcinoid support groups in the U.S. http://www.carcinoid.org/resources/support-groups/directory/. Best wishes, Ralph!
Dear Gaylejean: If you would like to find a carcinoid support group in your area here is a website where they list all of the groups in the U.S. Support Groups Directory – Carcinoid Cancer Foundation. The group in Michigan, where I live, is about three hours from me, however, I’ve been in contact with them through email and phone calls and have received a lot of good information that has helped me to talk to doctors more intelligently and certainly understand this rare disorder in a new way. Best wishes you to and blessings! Please keep in touch via Mayo Connect.
Support Groups Directory – Carcinoid Cancer Foundation
A support group would be helpful, I think. Just to compare treatments others are receiving. I have been living with this since 2002. My mom had the same diagnosis and she lived with it for 24 years before dying at 85. She never had treatments of any kind which is a hopeful prognosis for someone older with this diagnosis. I get a Sandostatin shot 1x/month with a recent increase from 20 to 30 mg.
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