Dying from car accident can cause death more so this cancer
My oncologist told me that having a car accident will likely kill me more so than this type of cancer.I was diagnosed in 2021.So far has not spread no treatment except EGDs every 6 months and ct scans now going out done every 12 months.Has any of your doctors told you this?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hi @peggymariejackson as I mentioned in another one of your posts, I have lung NETs — typical carcinoids plus DIPNECH (very rare, but related). I have over 50 visible lung tumors that are visible on scans and they say hundreds or thousands of tiny ones in my airways that we can't see on scans. First discovered in 2008. Very slow growing. Diagnosed in 2020. Monthly octreotide injections have really minimized my respiratory symptoms including coughing. It took a decade for the tumors to double in size. I have been told this is like a chronic cancer and UCLA and I will be working together for a long time. They did destroy the largest tumor 2.6 cm with microwave ablation. We can't remove all the tumors or I wouldn't have any lungs left. The plan is to destroy any that reach 2 cm as those are more likely to metastasize. Most are around 1 cm, some a little over. Each NETs case is different with a different prognosis. But, in general, it seems to be much better to have NETs than other more common cancers. LACNETS.org is a great website for NETs info with lots of video from NETs specialists and other resources. It's very plausible that your doctor is correct with his prognosis.
Many factors to consider—grade of tumors, locations, whether well-differentiated or poorly differentiated. A close friend of mine was diagnosed at 28, grade 3, poorly differentiated, and only had a few months. Mine was diagnosed in January 2020, grade 2/3, unknown primary, well-differentiated, but everywhere. I have “innumerable” tumors in my liver. I’ve been on three different chemotherapies (a total of 62 rounds—60 IV and 2 CAPTEM) and will finish my 4th PRRT at the end of this month. I’ve found that treatments and outcomes with this type of cancer are highly variable and unique to each person.
The problem with blanket statements like your doctor told is that we all have different types of NET and in different stages of development.
I have an Insulinoma NET, pancreases to liver. I had no symptoms but when it was diagnosed in April of 2022 the tumors on my liver were 4 centimeters and to numerous to operate. By August they were 10+ centimeters.
The first doctor told me there was nothing that could be done and to make arrangements. The second doctor told me not to worry, liver failure was painless and would I like to participate in an end of life study? Third doctor started chemo immediately and tumors have been reduced back to 4 centimeters and I’m taking a monthly shot of Octreotide to maintain.
I’ve been criticized on this site for simply repeating what my doctors have told me.
In your case it may be true and there are many on this site that have maintained for years but don’t take it lightly there is no “cure”.
But, look both ways before you cross the street!
Best of luck
Thank you I am moving closer to my son in July and better care it is horrible here I am in Rural Marquette county.I wish you well let’s pray it gets better.
Wow @lastround that's terrible what the first two doctors told you. Glad you saw a third! When my brother was diagnosed with stage 4 lung cancer (the common kind – not NETS — even though he never smoked) they told him he had 3 months to live. Don't take treatment, go home and get your affairs in order. He was 45 and said, "That's not acceptable. I want the most aggressive treatment possible." He lived two more years on chemo and radiation and he was really advanced to begin with. He was a fighter.
I'm less concerned about the lung NETs because I also have unrelated metastatic breast cancer so that's my greater concern.
I hope you're feeling better and better and have some quality of life with the treatments you're on. Hugs!