Choosing to stop treatment

ilovewhenitrains

I was diagnosed with metastases in October last year and was given ~12 months. We tried Trodelvy but it was too hard on my body. Tried Eribulen but a recent CT scan showed it’s not working.

my onc has said we could try liposomal doxyrubicin but I had a horrible time on doxorubicin last year. He estimates I have maybe 2 - 3 months left and the next treatment has about a 20% chance to work, and if it does, it would only buy me a couple more months at most.

im thinking it’s time to stop treatment and just enjoy the days I have left.

has anyone else made this decision? What is your experience? Were you in pain or have other bad symptoms?

FLClover

I’m very sorry that you find yourself where you are. I think this decision is a very personal one. I just have a bit of a far-out comment, and that’s that no one can tell you how much time you have left. Time and again patients have far out-lived their doctors’ predictions. The mind is a very powerful thing, so if your mind tells your body that it will live a lot longer, then it has a much better chance of doing so than if it listens to a doctor who is not God. 

I wish you serenity in your decision and happiness 💟. 

Cath62

Hi @ilovewhenitrains, I am not in your situation but I want to wish you well in your decision. I can't imagine having to make that choice.

 I have a friend in a similar situation and at this stage they are continuing treatment. I am not sure how long they will continue. 

Trust your instincts and do what is right for you at this time. Wishing you peace in your decision and sending you a virtual hug. 

arpie

I am So sorry to hear this, @ilovewhenitrains ...  as @FLClover says - no one can really say 'how long' anyone may have ... and as @Cath62 says - trust your instincts with your decision making. xx

In hindsight, I almost wish that my husband's treatment had stopped earlier (but we hoped for that 'miracle' and continued with it.)  If we'd stopped earlier, he would have had better quality for his remaining time, instead of continuing the treatment that made him so ill .... but it is a decision only you can make xx

Take care xx

June1952

This is terrible news for anyone to receive @ilovewhenitrains.  As all have said, it is a very personal decision.  Doctors can be quite good at guessing the timelines but they can also be quite wrong.  As @FLClover says, the mind is a very powerful thing and you can use that to your best advantage and prove the medicos wrong.  If you have good supports around you and can be strong and positive then go with your own gut feelings.  Always remember that the medical profession can prescribe drugs to keep you as pain free as possible.  We will all be thinking of you and hope you enjoy special moments.


I also love it when it rains !

FLClover

Beautiful picture @June1952 🥰, and nice message ♥️.

TonyaM

Hi @ilovewhenitrains, I’m sorry to hear you are at this stage. My dear mum was diagnosed with liver cancer and the doctors gave her 6mths,perhaps a few extra months with chemo. She opted not to have it and then lived for another 14mths.She had a nice time at home with family and I nursed her to the end which was peaceful. She didn’t have much pain until the last 6wks and it was controlled well with morphine. I know everyone’s situation is different but the doctor’s don’t always get it right.Trust your instincts- there’s no right or wrong answer. Sending hugs xx

Julez1958

Hi @ilovewhenitrains
I have always loved your pen name!
Nothing is certain and your oncologist can only give  you their best guess.
You may  defy the odds but then again if the side effects of the treatment are tough you need to weigh that up.
No one said this shitfest was easy.
I hope you settle in the best way forward.🌺

Zoffiel

@ilovewhenitrains you do whatever you want to now. If you want to stop, stop. 
Think of what you told yourself when this started, and follow your heart.
Best wishes MXX

Ellamary98

@ilovewhenitrains , I agree with others. Do what you want to do in your heart and make it very clear to your loved ones.I firmly believe that every last day of our lives, even with this disease, belongs to ourselves. If you want your last months to be free of treatment, then go for it. And yes, specialists are just providing prognoses based on their experience with other patients. We are all so unique. I hope you are able to settle on a course of action (or inaction) that you feel good about. Lots of love.

Vangirl

@ilovewhenitrains It sounds as if your decision is almost made for you. Have you been referred to palliative care? They should be able to help you with pain, nausea and other issues. If you decide to not take any further treatment, you should still be able to get good pain relief etc. I am currently using Fentanyl patches and oxycodone, and they are both very effective. Wishing you all the best xxx

trix63

Do what you think is best for you. I was diagnosed 1st May 2023 with De Novo MBC and after a terrible experience with hospital doctor and breast nurse with terrible side effects of meds within 2 weeks, I stopped all treatment. Happy to say 21 months later I am still active and enjoying life. Cancer has spread to one eye but 5 radiation treatments have helped. Pity I was refused radiation by hospital oncologist to begin with but found a way around him and now have a supportive radiation oncologist for palliative care. Have a meningioma that is growing which was ignored by hospital oncologist so my GP arranged a neurosurgeon to check it out. Yet again, this doctor thinks radiation will help. I am happy not to be in constant pain and illness due to a drug regime and look forward to getting up every morning to my normal daily routine.