Metastatic Poorly Differentiated small cell neuroendocrine Carcinoma,
Now what after chemotherapy? Current oncologist opinion is wait and see. Trying to get appointment at Mayo Clinic. I don't like the wait and see approach if there are other treatment's possible. I survived chemo don't want to stop now.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Do I just have to call each location and can my referral be transferred or does a new one have to be sent?
Hello @jay1225 and @dorrieb60
I'd like to add my welcome to you both to Mayo Connect. I'm glad that you are posting about your concerns in the NETs discussion group. I joined Mayo Connect prior to my third surgery for NETs in the upper digestive tract (duodenal bulb) and I understand how difficult it is to go from one surveillance to the next. It is stressful, no doubt.
You are both so wise to seek an appointment with a NET specialist at Mayo. Mayo does have a very qualified team of doctors, radiologists, and nurses who can help you.
I'm wondering, @jay1225, what type of chemo you had. Was it PRRT?
@dorrieb60, as Colleen (@colleenyoung), asked I'm wondering where your NETs were located,
I would also encourage you both to attend the NETs virtual support group that meets on the first Thursday of each month. At these meetings, NET providers speak about the latest research and treatment. More importantly, however, there are a number of NET patients who attend and share with each other. Real strength comes from this sharing.
I would encourage you both to view some video presentations by Mayo doctors. These were provided by the Carcinoid Cancer Foundation.
These videos feature two Mayo doctors who work with NETs patients. The first video is from a doctor at the Rochester, MN campus and the second video is from a doctor at the Jacksonville, FL campus.
I would also like to invite @mfgw, who has discussed his journey with a NETs diagnosis.
I hope to get to know you better so that I can connect you with other members. So please share a bit more about your journey with NETs. What other questions do you have?
@dorrieb60 I would start by calling Mayo Jacksonville where you've already got an appointment and ask 1) if an earlier appointment has come available and if not 2) can your request be transferred to another location.
I hope you can get to see a Mayo doctor for a second opinion. Will you post an update?
The pathology (staging/gradung) is very important for a correct diagnosis (DX). The DX will determine the treatment plan and potentially the sequencing of therapy. It is good you are seeking a second opinion. I would visit a Mayo campus close to home, out of convenience. My wife (she is the patient) have been to Mayo Rochester 20 times over 7 years. We visited Phoenix on a trip once and may utilize Jacksonville next winter while in Florida for several months.
It has been a while since you last posted. How are you doing? Will you post an update?