Turkey, Volunteer Mentor | @tomrennie | 4 days ago
Hi @movetowellness and welcome to Mayo Connect. There are several of us on here that have the same diagnosis me included. Did you get that diagnosis? What were you told? What are the top three questions/concerns that you have at this point?
Hi @movetowellness and welcome to Mayo Connect. There are several of us on here that have the same diagnosis me included. Did you get that diagnosis? What were you told? What are the top three questions/concerns that you have at this point?
Hi there, that is the diagnosis, stage 4 with mets to liver, spine, and some lymph nodes, and I'm still learning how to understand the medical details. I'm told it's rare and aggressive. I've done 6 rounds of chemo and immunotherapy and also radiation to the spine. After finding this site last week I attended the support meeting last week and I scheduled a 2nd opinion with Dr. Starr later this month. I'm wondering if the aggressive nature of the diagnosis is common or if that varies by person. The oncologist has made clear at every opportunity that this is "treatable, not curable" and my impression is that she anticipates rapid decline. The diagnosis came in April and I've responded fairly well to treatment, though there are mixed results for the liver. I'm told surgery is not an option. Are there medications that are typical that I could suggest to the oncologist? At what point is PRRT an option? What else should I be thinking about?
@movetowellness, @tomrenna, @denisepierce, et al:
I can relate to your frustration in obtaining advice of effective treatments for NET Cancer. We need to be positive and persistent to get expert guidance for our disease. Proceed until you get consultation (or 2nd opinion) with a NET Medical Oncologist specializing in your type and location of cancer. University Medical Centers, Cancer Centers, Mayo, City of Hope are among avenues available to locate the specialist most applicable to your situation. Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!
Whether surgery is recommended in stage 4 is variable; important to get opinion of NET surgeon in conjunction with a tumor board -then YOU decide if a less invasive treatment is best for you.
PRRT can offer you great shrinkage of tumors and elimination of others IF you are a good candidate - your tumors need to be Receptive (you need to have a Gallium68 PET scan to determine). This was the choice I made for my 80yr old body when tumors were progressing and surgery or treatment was my dilemma a year ago. I had great results with PRRT Lutathera and glad I did not choose the invasive surgery procedure.
I hope this info helps. dbamos1945
Hi there, that is the diagnosis, stage 4 with mets to liver, spine, and some lymph nodes, and I'm still learning how to understand the medical details. I'm told it's rare and aggressive. I've done 6 rounds of chemo and immunotherapy and also radiation to the spine. After finding this site last week I attended the support meeting last week and I scheduled a 2nd opinion with Dr. Starr later this month. I'm wondering if the aggressive nature of the diagnosis is common or if that varies by person. The oncologist has made clear at every opportunity that this is "treatable, not curable" and my impression is that she anticipates rapid decline. The diagnosis came in April and I've responded fairly well to treatment, though there are mixed results for the liver. I'm told surgery is not an option. Are there medications that are typical that I could suggest to the oncologist? At what point is PRRT an option? What else should I be thinking about?
I also was diagnosed stage 4 primary in the small intestine and spread to the liver inoperable. I finished my PRRT treatments 2 months ago, results showed some tumors that were small were barely visible and the larger ones have reduced in size.I am still on Ocreotide injections every 28 days which controls my facial flushing. Diagnosed almost 3 years ago I most likely had it for quite a few years prior..
My best wishes to you and hope for your coming visit with Dr. Starr, Ive been fortunate in seeing him since December 2022 ..
@movetowellness, @tomrenna, @denisepierce, et al:
I can relate to your frustration in obtaining advice of effective treatments for NET Cancer. We need to be positive and persistent to get expert guidance for our disease. Proceed until you get consultation (or 2nd opinion) with a NET Medical Oncologist specializing in your type and location of cancer. University Medical Centers, Cancer Centers, Mayo, City of Hope are among avenues available to locate the specialist most applicable to your situation. Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!
Whether surgery is recommended in stage 4 is variable; important to get opinion of NET surgeon in conjunction with a tumor board -then YOU decide if a less invasive treatment is best for you.
PRRT can offer you great shrinkage of tumors and elimination of others IF you are a good candidate - your tumors need to be Receptive (you need to have a Gallium68 PET scan to determine). This was the choice I made for my 80yr old body when tumors were progressing and surgery or treatment was my dilemma a year ago. I had great results with PRRT Lutathera and glad I did not choose the invasive surgery procedure.
I hope this info helps. dbamos1945
You are so right when you say, "Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!" We all need to look for NET specialists, rather than an oncology practice. There are listings of NET specialists available. Often, even a one-time consultation is helpful to be assured you are on the right track with a treatment plan.
@movetowellness, @tomrenna, @denisepierce, et al:
I can relate to your frustration in obtaining advice of effective treatments for NET Cancer. We need to be positive and persistent to get expert guidance for our disease. Proceed until you get consultation (or 2nd opinion) with a NET Medical Oncologist specializing in your type and location of cancer. University Medical Centers, Cancer Centers, Mayo, City of Hope are among avenues available to locate the specialist most applicable to your situation. Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!
Whether surgery is recommended in stage 4 is variable; important to get opinion of NET surgeon in conjunction with a tumor board -then YOU decide if a less invasive treatment is best for you.
PRRT can offer you great shrinkage of tumors and elimination of others IF you are a good candidate - your tumors need to be Receptive (you need to have a Gallium68 PET scan to determine). This was the choice I made for my 80yr old body when tumors were progressing and surgery or treatment was my dilemma a year ago. I had great results with PRRT Lutathera and glad I did not choose the invasive surgery procedure.
I hope this info helps. dbamos1945
Thank you for mentioning your age. We are in the same decade - I'm 85, as is my husband. My tumor appeared on my right calf, very small and I'm going through radiation post-surgery which was June 16. We're in FL, so Moffitt and Jupiter Medical Ctr were suggested. Looking at the treatments others have gone through, a huge concern for us is the cost of all this. We fall in the gray area of not being able to pay huge med. bills, but not qualified for low-income assistance. Anybody else in this position? Hugs to all who have endured so much!
Hello @denisepierce and welcome to Connect. I am glad that you found this forum. NETs are a rare form of cancer, and it helps to meet with others who are travelling down the same road. I came to Connect before my third surgery for NETs in the upper digestive tract. I had no symptoms to indicate that there were any problems; it simply showed up in an upper endoscopy.
Share, as you would like, a bit about your journey with NETs. How long ago were you diagnosed? Was your large cell neuroendocrine carcinoma located in the digestive tract?
Connect
Connect
Like
Helpful
Hug
Hi @movetowellness and welcome to Mayo Connect. There are several of us on here that have the same diagnosis me included. Did you get that diagnosis? What were you told? What are the top three questions/concerns that you have at this point?
I was diagnosed with large cell neuroendocrine carcinoma, I have had chemo and radiation, radiation shrunk tumor, ct scans monitoring for now.
-
Like -
Helpful -
Hug
1 ReactionHi there, that is the diagnosis, stage 4 with mets to liver, spine, and some lymph nodes, and I'm still learning how to understand the medical details. I'm told it's rare and aggressive. I've done 6 rounds of chemo and immunotherapy and also radiation to the spine. After finding this site last week I attended the support meeting last week and I scheduled a 2nd opinion with Dr. Starr later this month. I'm wondering if the aggressive nature of the diagnosis is common or if that varies by person. The oncologist has made clear at every opportunity that this is "treatable, not curable" and my impression is that she anticipates rapid decline. The diagnosis came in April and I've responded fairly well to treatment, though there are mixed results for the liver. I'm told surgery is not an option. Are there medications that are typical that I could suggest to the oncologist? At what point is PRRT an option? What else should I be thinking about?
-
Like -
Helpful -
Hug
1 ReactionThank you for sharing. How long have you been in the monitoring stage?
For 6 months
@movetowellness, @tomrenna, @denisepierce, et al:
I can relate to your frustration in obtaining advice of effective treatments for NET Cancer. We need to be positive and persistent to get expert guidance for our disease. Proceed until you get consultation (or 2nd opinion) with a NET Medical Oncologist specializing in your type and location of cancer. University Medical Centers, Cancer Centers, Mayo, City of Hope are among avenues available to locate the specialist most applicable to your situation. Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!
Whether surgery is recommended in stage 4 is variable; important to get opinion of NET surgeon in conjunction with a tumor board -then YOU decide if a less invasive treatment is best for you.
PRRT can offer you great shrinkage of tumors and elimination of others IF you are a good candidate - your tumors need to be Receptive (you need to have a Gallium68 PET scan to determine). This was the choice I made for my 80yr old body when tumors were progressing and surgery or treatment was my dilemma a year ago. I had great results with PRRT Lutathera and glad I did not choose the invasive surgery procedure.
I hope this info helps. dbamos1945
-
Like -
Helpful -
Hug
2 ReactionsI also was diagnosed stage 4 primary in the small intestine and spread to the liver inoperable. I finished my PRRT treatments 2 months ago, results showed some tumors that were small were barely visible and the larger ones have reduced in size.I am still on Ocreotide injections every 28 days which controls my facial flushing. Diagnosed almost 3 years ago I most likely had it for quite a few years prior..
My best wishes to you and hope for your coming visit with Dr. Starr, Ive been fortunate in seeing him since December 2022 ..
-
Like -
Helpful -
Hug
5 Reactions@dbamos1945
You are so right when you say, "Our local Oncologists just don’t have the experience with our rare NET cancer - and we need expertise!" We all need to look for NET specialists, rather than an oncology practice. There are listings of NET specialists available. Often, even a one-time consultation is helpful to be assured you are on the right track with a treatment plan.
-
Like -
Helpful -
Hug
3 ReactionsThank you for mentioning your age. We are in the same decade - I'm 85, as is my husband. My tumor appeared on my right calf, very small and I'm going through radiation post-surgery which was June 16. We're in FL, so Moffitt and Jupiter Medical Ctr were suggested. Looking at the treatments others have gone through, a huge concern for us is the cost of all this. We fall in the gray area of not being able to pay huge med. bills, but not qualified for low-income assistance. Anybody else in this position? Hugs to all who have endured so much!
-
Like -
Helpful -
Hug
2 ReactionsHello @denisepierce and welcome to Connect. I am glad that you found this forum. NETs are a rare form of cancer, and it helps to meet with others who are travelling down the same road. I came to Connect before my third surgery for NETs in the upper digestive tract. I had no symptoms to indicate that there were any problems; it simply showed up in an upper endoscopy.
Share, as you would like, a bit about your journey with NETs. How long ago were you diagnosed? Was your large cell neuroendocrine carcinoma located in the digestive tract?
I look forward to hearing from you again.
-
Like -
Helpful -
Hug
1 Reaction