New Here

Hi  Sharon, and a very warm welcome to our little forum, though I'm so sorry you find yourself here and for all you've been through, it's not a place any of us  thought we'd ever be, but its a place we all gain from belonging, the support and friendship from the lovely people on here who are the only ones who truly understand what it's like to live with our diagnosis, allows us to share everything without being  judged, so please feel free to ask anything, if you want to scream, rant, blow off steam, need a proverbial shoulder to cry on, a chat or even a laugh, we're all here for you as we are for each other. Your dilemma is/was familiar to a few of us, including myself co-morbidities both limit, and increase the risks with treatment for me and I too am leaning heavily towards stopping treatment when my present one fails completely.

love Eddie xx 

Hi Eddie  thank you for the warm welcome. I have been reading through other posts in the group and it's great to see how supportive everyone is to each other. I was looking for a group with members going through similar to my situation. It is hard listening to your oncologist saying you only have a few months to live, but if we treat you the chemo will likely kill you sooner, and it would only give you 3 more months if it worked.

I hope your current treatment continues to help you.

Sharon

Hi Sharon, your very welcome my friend. I and many others can relate to your experience, I'm unable to have almost any surgery, chemotherapy is on the wrong side of risk-reward, and all possible treatments have been tried and my latest/last one is failing, I was diagnosed with prostate cancer in 5 organs and 8 lymph nodes, we got it down to 1 lymph node now after seeing my oncologist last Tuesday, it's in my spine, ribs, pelvis, femur, and lung, the last 4 have appeared in the last 8 weeks, so I've no idea what time I've got, Sharon have you discussed targeted or immunotherapy, or clinical trials my friend.

Eddie xx 

Hi Eddie, although the last treatment I had was successful in shrinking my tumour it remained in the lining of my oesophagus so quickly started growing again and spreading to the lymph nodes. Because of where it is, I will soon be unable to swallow any food or fluids and will require a tube being inserted directly into my stomach or intestine. Because it is a fast growing cancer it will quickly spread to other organs etc which is another reason why my prognosis is now just months rather than years.

I am sorry yours has already spread to so many area's. When you saw your oncologist did they not discuss the treatment or your prognosis? Although I have noticed at my appointments I am the one asking about those. But I am the type that prefers to know as much information as possible.

When I asked about any possible treatments my oncologist only mentioned the chemo and how risky it would be. No mention of targeted or immunotherapy. I just assumed they were not an option, or my mdt would have discussed that at their meeting prior to me seeing the oncologist.

Sharon xx

Hi Sharon, I'm sorry you have reason to be here but the support is incredible.

I was diagnosed with laryngeal cancer in August 2024 and lung cancer a short time later. I too underwent chemo (6 cycles) and radiotherapy (33 sessions). Tests also showed a weak PDL1 positive for the neck and a strong positive for the lung so now I am on immunotherapy and stable so far. Next scan results on Friday. So it is worth asking about immunotherapy.

As to prognosis, even the best oncologists cannot reliably predict individual cancer growth dynamics, any prognosis is an assumption based on (often outdated) statistical models. Loads of people here are well beyond their sellby date. I respect your decision which I know I will face at some point. I wish you well and come on here whenever you need to.

Hi Patrick, thank you for your reply, and I do realise prognosis is guesswork and being a fighter I hope to prove oncologist wrong.

I have been unlucky in that since my diagnosis I only saw my first two oncologists once due to them leaving. I have seen my third oncologist only twice, he has replaced both my previous and did say he only specializes in chemo and surgery, both of which I am too high risk for.

As I had asked if I could have any treatment and was told how risky they were, it never occured to me to ask "what about targeted or immunotherapy. I will not see my oncologist now until Feb for my next scan results. But I plan to call my cancer nurse this week for advice why these haven"t been discussed either at my mdt meeting or with my oncologist.

Good luck with your results on Friday

Sharon xx

I called my cancer nurse this morning to ask why targeted and immunotherapy hasn't been mentioned. She immediately got in touch with my oncologist and called me back.

Apparently a blood test is done to see if your cancer will respond to that treatment, in my case it isn't so that is why it was not offered.

As far as I know, they can only get that data from a biopsy, not a blood test?

https://share.google/MUp4DBIpMEoJ8qbpv

Thanks Patrick, maybe she mispoke, but I did have more biopsies recently which is probably why the oncologist said that my cancer is unsuitable. I cannot imagine he would say that if they hadn't even tested.

Sharon xx