› Forums › General Melanoma Community › End of NED?
- This topic has 5 replies, 5 voices, and was last updated 5 years, 9 months ago by WallyE.
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- July 26, 2018 at 8:51 am
have been NED for about 6 / 8 months now after fighting the disease for over 10 years. I recently experienced chronic pain in my chest / diaphragm area. Because of my history a Sonar Scan was done which revealed a possible cyst at the tail end of my pancreas. A CT Scan was then done with the same result. They are not sure whether or not it is Mets or only a plain non malignant cyst. Is it possible that the Mel is back, They only plan to do further tests in October. I am worried sick as my understanding of pancreas cancer is that you hardly ever survive it,
Regards
Wakky
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- July 26, 2018 at 8:36 pm
I am in a similar position with lung nodules – I try not to think about it but it’s hard. The only thing I can offer is that Mel mets on the Pancreas isn’t the same as pancreatic cancer which has a really poor survival rate. Modern immunotherapy has improved treatment options significantly so don’t give up hope!!
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- July 27, 2018 at 12:34 am
Wally,
I'm sorry you are going through an anxious time. I just wanted to say that cancer on/in the pancreas is not the same thing as pancreatic cancer. Not sure that makes any difference in prognosis or not but hopefully, this is just a cyst.
Cheers!
Maggie
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- July 29, 2018 at 2:28 am
If melanoma spread to your pancreas you would not have pancreatic cancer. My melanoma spread to my right lung and they did a wedge resection of my right lung. This didn't mean I had lung cancer though. This is probably what they would do for you if it ends up being melanoma. They do wedge resections of the pancreas as well. Let me know when you find out. Take care. Gregg
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- July 30, 2018 at 1:50 pm
Hi Wally…. My pancreatic cyst isn't new, but has been there since my first CT ever. I had no clue there was anything going on. It remained stable throughout my melanoma treatments, growing ever so slooooowly AFTER I began Keytruda. While the melanoma has gone away and stayed away, this 1.7 cm "thing" on the tail of my pancreas has decided to camp out in place. I've only had 3 PET's ever since stage IV diagnosis. None of them have shown uptake on the pancreatic tail, so we're assuming cyst. I've done as much googleing as humanly possible, and it seems that they're not as uncommon as one might think. Many of them are quite harmless, unless they grow to a size that becomes uncomfortable within your body cavity. Naturally, needle biopsy would carry certain risk, and surgeries aren't typically recommended unless there is proven malignancy. Sooooooo… for the last 5 years, we've just kind of watched mine camp out there on the tail, doing nothing. Had I not developed stage IV melanoma, I'd never even have known that little bugger was in there. Your chronic pains and that "cyst" on your pancreas could be pancreatitis or something going on with your gallbladder. Try not to worry too much… stress won't help your chest pain. Easier said than done… I totally understand! Reduce or cut out any alcohol intake, try more frequent smaller meals, and avoid fatty foods. If none of that helps… ask them to look into doing a PET… see if that bugger lights up.
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- July 31, 2018 at 7:22 am
Hi everybody. So grateful for all the replies. You have no idea what a burden has been lifted as the oncologists seem to circumvent your qu0estions and you never really get the real issue out of them. Once I have my next test results I will certainly post them to prove a point that NED means NED Thank you everyone.
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