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Advanced NETs: Acceptance of living with NETs
It is often said by oncologists that NETs is slow going and it usually is slow going.. Sometimes, I have heard that "You will die with NETs not by NETs" I have not read or heard discussed that sometimes treatment is no longer possible or viable for the patient. I found this
video to be helpful.
It can be an awkward situation to be at the acceptance stage with or without a distinct timeline and feel as if the end stage is awkward in NET groups and with individuals.. Just wondering about other's take on this situation.
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Hello! I met my soul mate 6 years ago. We found out about 6 months into our relationship that he had Carcinoid tumors and probably had for years. Numerous Dr visits and hospitalizations, plus 2 surgeries. He was waiting to get a second valve replacement but was told he wouldn’t survive another operation, which was true. Sadly he went to palliative care thinking he would be coming home after IV diretics to remove the fluid. He passed away after being there a month. That was January. It’s now June and I’m still crying everytime I mention his name. Daily! Just had to vent.
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11 ReactionsThis is a great informative video. I attended all his appointments, so I knew what we in for, but this is so much more detailed!! Thank you for posting this. I sure wish I had seen this years ago! ❤️
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4 ReactionsBluebird and Nevinrbaskin
Thank you for responding. I was hesitant to post this information, understanding that it is generally true that people live with Nets rather than dying from it... However the acceptance stage is often reached and sustained when shared. And the information can sometimes be freeing..
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1 Reaction@bluebird1953
Bluebird, Rather than venting you are sharing your love for the person you loved as your priority, especially when he was so sick. Naturally his name and memory brings tears of missing and memories, of gratitude and grief. How beautiful is your love...May you feel that love sustaining you in your grief with your soul-mating connecting somehow still.
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5 ReactionsThanks for sharing this.
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2 ReactionsHello @maeve115,
After 23 years and three surgeries for NETs, I am definitely at the acceptance stage. As we age, other health issues develop that often complicate the treatment of NETs.
We all need to keep the most positive attitude possible. I am glad that you felt free to post this discussion topic.
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8 ReactionsIt is a sobering video, more emphasis on the phycology and palliative stage of NET treatment. It feels it presents a somewhat difference between the US and UK treatments. It is an oder one, many US doctors say don't listen to the online prognosis forecast which tend to be based on the years in the past, not the newer treatments.
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1 Reaction@owl3456
Thank you for your input. Good point.. It is true that for most people who have NETs that the majority of people will die with NETs rather than from it. The video is not conducive to them
And it does seem to be anolder presentation which is another good point. Now the UK and US have many more treatments and more coming round the bend. For me the video was not a prognosis but did speak to the fewer folks for whom it applies. Therefore my concern in posting it. Any other pertinent resources dealing with this particular situation appreciated.
In addition, for the fewer, it might help explain to friends why the decision has been made.
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3 Reactions@owl3456 Hi and welcome to Mayo Connect. It seems like you are talking from experience. Do you have NETs? If so, what are you diagnosed with? Thanks.