Newly incurable- rare cancer (sarcoma) - struggling with uncertainty

Hi LJI in 2018 bowel cancer surgery got rid off of. 2019 the big C came back. With lungs, outside of stomach,  groin,  and shoulder, I'm sure I've missed one off. Put on palative care there and then ! Put on immunotherapy which my body responded to well, supposed yo be 2 years. Here we go into guinea mode.When I asked how long I had left, I was told 12 to 28 months! That was in 2019.  2026 I'm still here. was left on it for 4 1/2 years. At the moment I'm 1 year cancer free.

I'm retired so don't work, but lots of people on here work as long as they can, most employers seem to understand their situation. As for the family me and my husband new I was terminal As the rest got used to me having it I then told them terminal. Some ok some didn't three problems. We gave hope, try to carry on with your life as best you can. Keep posting.  X

Moi

Thanks so much for replying and so  pleased to hear how well you are doing! It gives me some hope I could just possibly stick around long enough to see my son finish school, which I would love to do x

I have metastatic TNBC. First diagnosed in Feb 22 and found liver mets on a scan done for other reasons in August of the same year. Treatment options are limited for TNBC but I was lucky to fall into the relatively small percentage who might benefit from pembrolizumab, which had just been approved for my cancer. Prognosis statistics for people treated with pembro therefore limited to the group who had been through the clinical trial leading to the approval. 

I didn’t ask for a prognosis. My instinct said anything I was given wouldn’t reflect newer treatments and that once I had heard it, I couldn’t unhear it. I would also need to declare it on travel insurance etc. It felt like sticking a use by date on my head. I did however know from research that I was likely looking at somewhere in the 6-15 month range and that the 5 year survival rate was vanishingly small. 

The pembro worked (with a lot of other consequences) and I have been cancer free since stopping the treatment in Sept 23 and having a clean up ablation in Feb 24.

I feel the ‘incurable’ paradigm is starting to be challenged by people who respond well to immunotherapy treatments. An oncologist contact (not my own oncologist) told me my job was to stay as well as possible as new treatments will eventually come on line and make things better for many of us. Maybe we can’t technically be cured but can live long reasonably normal lives, as you might with any chronic condition. I remain anxious about each scan cycle and always develop spurious symptoms in the run up to it - at least I hope they are spurious. Hoping this will ease if/when I get to the 5 year point next year  

I didn’t have problems with my own family failing to understand the diagnosis but I find many people don’t really understand stage 4 cancer or why it’s deemed incurable. People think stage 4 means end of life, lying in a hospital bed. Perhaps we will all get there but hopefully not for a while. 

Hoping you find a treatment that works well and is tolerable. You sound like you have a relatively low amount of mets right now and that has to be a good thing. Stage 4 is a big range from not a lot of cancer to bring riddled with it. Life expectancy most definitely reflects that. 

Hang in there, take good care of yourself. Be kind to yourself, I had a course of massage for free from Macmillan, ask about it . I got mine through thr hospital. Armchair Yoga . I also do 1/2 hour dance every day, loud music, on down days sofa movies, snakes, cried me leg off,  also a glass of wine in a Friday or 2. Mine was seeing ky grandsons finish school which is this May, Wills in 6 form. Tomes a year behind but going to college for a year so I intend to see him finish that. Keep posting.X

Moi

Hi LJI  a very warm welcome to the group, but I am so sorry you have had to join us here. I also have a rare sarcoma, mine is called LGESS and it is a womb sarcoma. I had a routine hysterectomy in 2019 and the sarcoma was discovered in the muscle in the wall of the womb, hiding. I was put on HRT, but in 2014 the sarcoma was back in both lungs. I was told I had 6 months to live. I have 3 daughters, and the youngest was just 12 years old at the time. Part of the sarcoma was blocking my airway and this was removed and sent for testing. They found that when they added estrogen it grew, added estrogen blockers it shrunk, so my HRT had been feeding the sarcoma. HRT was stopped and I was put on estrogen blockers, which have kept me stable ever since. I have my problems, hormone treatment is not easy, but I’m here to tell the tale. And my youngest daughter is just about to start a new job in the university, and has already got herself on the property ladder! 
The light bulb moment for my medical team was the estrogen. Your team just need that light bulb moment, and it can be found in those trials! When I was first diagnosed as incurable I lost my faith, I am only just starting to find that again, but the one thing cancer never took from me was hope, and you have to keep hoping. 

Thank you so much for taking the time to reply and it helps to remember incurable is not always equal to an imminent decline. My husband hasn’t spoken to anyone yet as he gets too upset, but I have today persuaded him to see the oncologist at my next appointment, hopefully this will help. I wish you continued good health and clear scans x

Thank you so much for replying. there are so many different sarcomas it does help to hear from others with them too who have managed long term success . I have had so much ‘advice’ from well meaning friends about this person and that person they know with other cancers and how they are doing, asking have they thought of this or that treatment . Whilst it is great to see what the medical profession can now do, my options remain limited/verging on experimental, but let’s hope they discover a light bulb. The chemo is apparently super harsh, early days but so far so good. 
Thsnks again for your reply x