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Ashamed: I think about (and plan for) dying. Do you?
Hi, did anyone, after there cancer and COPD diagnosis start to think about dying? After almost four years, I still do, all the time. Planning my funeral, how to leave my children, how it will be to be in a coffin. Bizarre, I know.
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@mir123 -- guess what? I'd already forgotten my own details. I just pulled out my file folder to look for some specifics and see I had 37 radiation treatments (28 regular + 9 boost) not 27. No wonder I had side effects. So you may do much better with your 15 + 5 optional. Good luck!
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1 Reaction@mir123 you'll do great! I just needed someone to walk my dog for me during the worst of it. My treatment was 18 regular + 9 boost. With fewer treatments, hopefully your skin will not get too bad. When mine healed, it was darker than other skin, but that resolved in a few months. They assured me that their equipment is so precise these days that the radiation would miss my lungs. That made me feel better. Let us know how it turns out. Have fun at the music festival!
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1 ReactionThank you! Your note came at the right time--I've just had the set up for radiation. I'll do 15 treatments, with another 5 optional. I have a huge supply of Calendula! I am worried about fatigue--particularly after treatment. I'm disabled with chronic pain and mobility issues--so fatigue is already my middle name. However, I am an expert at resting! I hope to feel well enough post treatment to take my husband to a music festival for his 70th birthday. But I know to get a nice hotel and personally to only aspire to one event per day. Thank you for the prayers and the encouragement. And for your kindness! Surprisingly, my radiation oncologist has been very collaborative and said simply that I can take 4 days off a any point in series, and of course quit if I can't go on. Th fact that I don't feel pressured is actually an incentive
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1 ReactionWow @mir123, thanks for sharing that. I know NETs can be anywhere, but usually GI or lung. Haven't heard of breast till now. Sorry to hear you have an aggressive type. I had radiation for my aggressive recurrent breast cancer in my chest wall - 27 treatments. Had surgery first, but a positive margin. Radiation just felt like a minor sunburn for the first 15-20 treatments then the fatigue and skin issues suddenly kicked in. Treatments are quick and painless each day. In and out in 10-15 min. Like getting a scan. That was two years ago, so I don't remember the timeline exactly. The worst was over 2-3 weeks after the radiation was over. Glad I had it. Just really, really be proactive and apply the cream 2-3 times a day as suggested. I used Calendula cream from day one. Praying for your comfort, joy, decisions and miracle cure.
I love all the things you are doing to make the most of each day and life. Happy you have a supportive hubby.
Thank you! Unfortunately my NET is in my breast and all specialists (UNM, Mayo) agree it should be treated as "ordinary" breast cancer. Sadly, this has poor results, and the World Health Organization says there are no protocols, and asks for research on the topic. The tumor is too fast growing for NET specific drugs. I was offered chemo, but declined due to kidney disease,
numerous co-morbidites, and preference. I've had a lumpectomy, but cancer is possibly still in a lymph node according to post op scan (pathology report notes only one other cancerous node). This may all be ordinary, but I'm 8 months in to diagnostics and a bit of treatment, including AI. I was pessimistic on diagnosis, and am now more so. I won't just walk away from doctors as my husband--a truly wonderful guy--wants me to at least listen to medical advice. Currently debating radiation. Each doc seems to go through a similar cycle: this is very rare and aggressive, this is totally ordinary, you need big gun treatment immediately, you need more treatment, etc. So emotionally & spiritually I've taken my attitude into my own hands, proceeding with common sense but little hope of cure. Instead, relying on family, friends, nature, creativity, travel (while I can), live music, reading, prayer, meditation, gardening, and being helpful when I can to give my life energy and meaning. Regards to you and this wonderful chat board.
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1 ReactionThanks Lisa. I’ll sure try and enjoy every minute.
Take care 🙏
LACNETS.org has a lot of info and contacts, videos from NETs experts regarding treatments for neuroendocrine cancer. Treated very differently than other cancers. It has a better survival rate than most cancers if treated properly. I hope that site has some useful information for you. It's rare so most doctors are not familiar with neuroendocrine cancers. A NETs specialty team like Mayo or other top cancer centers might be worth while for a second opinion. Prayers for you.
Joan, I think I mixed up your cancer history with someone you replied to so I guess the NETs info doesn't apply to you. Have fun in Hawaii! Lori
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2 ReactionsJoan, I love that you are going to Hawaii! One of my favorite places, but it has been a long time. So beautiful! It will bring you peace and, yes, warmth. Even California has been unusually cool this winter. Enjoy!!! Prayers for you, Lori
As for your lung NETS, I still want to be sure you've seen a NETs specialty team. There is a support organization in Los Angeles LACNETS.org with tons of info, links, videos of NETs specialists around the US giving talks about various treatments. NETs is treated very differently than other cancers and the patients tend to survive much longer. There is also a different treatment plan for each patient -- not standard like common lung cancer. It's more operable even in organs. It's a rare cancer with programs only at top cancer facilities. If your decision to stop treatment is just a quality of life issue and not wanting more surgeries or meds then I understand. I expect to make that same decision at some point. But my local oncologists were not familiar with NETs so I to go UCLA (Los Angeles) for NETs treatment and my local oncologist for unrelated breast cancer treatment. They coordinate. Not sure about Canada, but there is a NETs specialty team in Seattle, WA -- a couple hours from you. I hope the LACNETS site will be helpful.
I'm glad you are feeling well. Enjoy Hawaii! I'm excited for you. I've never been, but it's on my list. Take care, Lisa
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