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Atypical Carcinoid Tumor - lower left lobectomy. Radiation questions
Hello
My father, mid 60's, non smoker, fit and healthy, underwent a lower left lobe lobectomy approx 1 month ago. He is recovering very well. The biopsy after the surgery showed the tumor to be an Atypical Carcinoid Tumor which is apparently fairly rare and is an aggressive and fast growing type. The tumor that was removed was around 4cm.
The Surgeon has said that they can't tell for sure from the biopsy results if all the cancer/tumor cells were removed in surgery and that some abnormal cells may have broken out of their encapsulation in the tumor. He referred my father to an Oncologist to talk about possible Radiotherapy to the area. The lymph nodes removed from the lungs during surgery showed no evidence of cancer/abnormal cells.
My father has an intial visit with the Oncologist last week and they have said that they can't advise him either way whether he needs or should have Radiotherapy or not because apparently the cells for this type of tumor are very hard to see?
They have said he can choose to have Radiation if he wants, which would be 5 times a week for 4 weeks but potentially that could cause issues with his esophagus and other side affects given the location they need to target.
I am searching for assistance here for anyone who may have been in a similar scenario in making a decision or possible next steps to take so that I can give my Dad some questions to ask the Oncologist at his next visit this coming week.
thank you
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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It’s really hard to advise someone as to what steps they should take, he would want to hear all the details of what can be done and are the risks involved worth taking. The tumour was a fair size so you could assume it had time to spread but the lymph nodes were clear and that’s a good thing. I am a five year survivor of lung cancer and I had surgery for both times without chemo and radiation, the type of cancer I had was different from your father’s. I think that if he’s strong enough perhaps some follow up chemo could be an option to be more certain that nothing has spread, it’s truly so difficult to know the right answers so I feel that he should discuss all his concerns with the doctors and see what options they might have to offer for the best possible outcome, best wishes.
@elementalmiss, Welcome to Mayo Connect. I'm sorry to hear that your otherwise healthy father is facing this diagnosis and decision. It's never easy to make treatment decisions. We look for guidance from the doctors, they are our experts, but ultimately any treatment decision is our own. Just know that no question is too small. Ask about side effects, and how long they may last. Ask about effectiveness of the treatment, and what to expect once the treatment is complete, will there be follow up scans or tests into the future? Ask what kind of help he may need during and after treatment.
Sometimes a second opinion can be helpful too. Here are some tips:
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/
Also, don't forget to ask him what he needs from you. He may want a lot, or a little, help. Either way, he's fortunate to have your love and support. Together, you'll get through this. How are you (and your family) handling the diagnosis?
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1 Reaction@elementalmiss, I'd like to add my welcome. I added your question to the Neuroendocrine Tumors (NETs) support group as well as the Lung Cancer support group. I'm tagging a few members like @ce1b @ekri @californiazebra @aliciabusiness5 @bankovan, who are familiar with atypical carcinoid.
Decision making is a challenge when you've been thrown into the unknown world of cancer. Neuroendocrine/carcinoid tumors are especially challenging and usually require the input of physicians who specialize in neuroendocrine tumors.
Is your father's cancer care team familiar with carcinoid (NET) tumors? Have you considered a second opinion at Mayo Clinic?
Hello and welcome to the group. I would recommend you visit Ronny Allan’s website. He has amassed a great deal of information on “NETs”. His site can be found at http://ronnyallen.net… he also has a Facebook page.
Other great places for clinical information is Lancet and PubMed.. If you want to geek out on the subject matter..
As for me I did the chemo/radiation route.. What I found was it was difficult but worth it as my tumors have shown little growth. I should mention my tumor board found my primarily tumor as nonresectable. So I now live my life with the cancer still in me.
I have been monitoring the progress of stem-cell research and other new treatment that are still in the clinical trials, hoping one will someday be another opportunity.
One good book that help me find peace in the process was “The Beginners Guide to a the End” by BJ Miller. Praticical advice for living with the illness.
I wish your family much health and happiness in your NETs journey. I will include your family in my prayers.
Sincerely
CEB