Connect
When to Stop Seeking out Surgical Drs...
Hello, I was originally diagnosed with appendix cancer in 2016, goblet cell carcinoma with some carcinoid aspects. I had a debulking and HIPEC and 12 rounds of FOLFOX. I had clear scans for 1.5 years. In October of 2018 I experienced an intestinal blockage and discovered the tumors were wrapped around my small intestines. The surgery resulted in an ileostomy and Gtube and I am no longer eating. My nutrition is provided daily from TPN. A month or so ago my surgical oncologist said he had done all he could and our medical oncologist said chemo was not an option. We have spoken to two additional oncologists who agreed there was nothing left to do surgically. We've discussed immunotherapy but it doesn't seem like the tissue from the tumors are a candidate for immunotherapy. We've been to Cancer Treatment Centers of America to talk about PRRT, as they're the only who offer in our area, but that too seems like you must have the "right" type of tumors to be eligible and it seems goblet cell isn't? I was just wondering at what point do you accept what you've been told and just try to enjoy whatever is left. Of course we don't want to miss out on something but at the same time, all the traveling and expenses add up and everyone seems to be saying the same thing...
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
Hi @sherryboynton that must be so difficult to come to that point. I wanted to tag fellow Connect member @hopeful33250 as she may be able to provide you support as you continue to think about this.
Back to you @sherryboynton, how are you feeling physically at this point?
My brother is on Keytruda even though he was not a good candidate for it but doctors are amazed at how well it is working and doctors are finding it works on more types of cancers than previously known. Financially, see if your health insurer has a Cancer Services Program to reimburse expenses not normally covered.
It’s not my place to reply here, I suppose since I’m not in your shoes, but I have just signed on and this came up as my first discussion. I can only say the words that I’m so sorry but they seem so empty in a situation as yours. I’ve dealt with my son’s serious birth development defects and health for over 38 years and my own serious health problems for 20 years now. I have always told everyone that when the days come and you feel sorry for yourself all you have to do is open your eyes and look around. There are others in more dire situations. Even though we don’t know each other you will be in my thoughts and have my moral support. I wish I could offer more. I hope you find your answers, bless you
Hello @sherryboynton,
As a survivor of three surgeries for neuroendocrine tumors (carcinoid type), I am so sorry to hear of this difficult diagnosis.
While you have not mentioned your oncologists by location or name (except for Cancer Treatment Center) my only thought would be to contact a NET expert. Here is a listing of those specialists who have more experience than general oncologists. This listing comes from the Carcinoid Cancer Foundation website, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. This listing includes doctors all over the world. Carcinoids experts often have insight into cutting edge treatments that other oncologists do not know about. If your current doctor(s) are not on this list, I would encourage you to give a call to someone on the list.
If you care to share more, do you live in the Midwest? Mayo Clinic has a very good doctor there, Thorvardur R. Halfdanarson, M.D. Here is a website that discusses his background, https://www.mayoclinic.org/biographies/halfdanarson-thorvardur-r-m-d/bio-20055636.
How are you feeling, @sherryboynton? What is the most difficult symptom you are experiencing right now? Will you post again and keep in touch?
So sorry you are having such difficulty. I am facing issues regarding LCNEC! Aside from that, in my Internet wanderings, I have read about Dr. Eric Liu (?) in Denver, Co. He seems to be regarded highly in this field.
-
Like -
Helpful -
Hug
1 ReactionYes, @margot69, Dr. Liu is highly regarded as well. I think I heard that he has NETs himself.
These posts are very much appreciated. As a Carcinoid NEC Stage 3, MENS 1 survivor for 3 yrs so far, I take notice of such helpful information and share it with other Carcinoid patients I know.
Thank you all.
-
Like -
Helpful -
Hug
3 ReactionsHello @sherryboynton,
It has been a while since you originally posted about your health condition and I have been thinking about you. I hope that you are at peace with whatever decision you have made regarding continuing treatment or not.
I would love to hear from you when you have time to post again.
I went to Dr. Liu recently. I'm so fortunate that he's in my own backyard of downtown Denver. He seems to have a very good feel and understanding for these tumors. He didn't seem to think that my 6 cm appendix tumor that had spread into my colon and grown another 2 cm tumor was anything to worry about since the margins looked good on removal and my dotatate 68 scan was clear. I also went to highly regarded CU Health Science Center here and they recommended traditional right hemicolectomy just based on size alone and probability of spread. Just thought I'd share in case anyone else is looking! I haven't done anything yet other than removal of primary tumor.
-
Like -
Helpful -
Hug
2 Reactions