Hi,
I have been diagnosed with secondary breast cancer in the bones. I have viewed the scans and the disease is widespread. I have been offered Kadcyla as a treatment to inhibit the spread of the cancer, however the previous treatment of Chemo followed by 18 shots of Herceptin did not inhibit the spread at all as the cancer migrated almost immediately after the start of my treatment.
What I want to know is how will the disease develop if I decide not to have the treatment?
I have underlying health issues which will still remain even if the cancer is inhibited and I do not wish to prolong my life if it means a life of constant suffering.
I do not fear dying as my experiences have shown me that we survive death, but I am more fearful about living with my condition.
I would appreciate more information from the experiences of others.
Thank you.
Hi Suzannah
I can’t answer your question about how your disease will develop if you don’t have Kadcyla but just wanted to respond about Kadcyla itself.
It is a chemo that is carried into the cancer cell itself and therefore has less side effects than most. At one point my BC was shown to be HER2+ and I was given kadcyla so I know what the SEs can be, plus I used to chat to another patient on the chemo ward who had been on it for about 2 years and she also had little or no side effects.
Maybe it is worth starting on the treatment and seeing how it affects your quality of life, particularly as you say you have another underlying condition. If you can’t cope with the SEs at least you have given it your best shot.
Also maybe it’s worth speaking with a doctor or nurse at your local hospice? They maybe able to talk to you openly about how your SBC will progress with more insight than any of us on the forum? Even if it helps answer some of your questions and gives you an overall idea it might help with your decision making about treatment.
Good luck with what you decide, every one of us has a different experience of treatments, side effects, progression etc so it’s difficult to know how your particular SBC will react.
Nicky x
Hello Suzannah, I really understand how you are feeling. Pain is the big fear for most of us I would say. Some treatments for me have worked a bit and alleviate the pain for a while. I tend to go for treatments when offered as personally i’m so far on I don’t feel I have anything to lose. if you get bad pain you have the right to stop treatment at any time. I have found nerve block meds have helped me a lot. Interesting that your cancer changed as mine used to be ER pos, my husband asked if I could have a biopsy as no treatment was working and they found it’s not ER receptive or HER receptive, so it was good he did ask. Only revisiting chemos left for me. I can’t ask questions when we see a consultant because I am completely stressed out which isn’t like me but as we all know this is a really difficult disease to deal with.
Whatever you decide I wish you all the best.
hugs, Ramade x
Hi Suzannah,
I’m sorry to read about your diagnosis of secondaries, its so traumatic after only going through treatment recently. I am not on the same treatment as you, however I can empathise with your situation as a similar thing happened to me.
On a total tangent, I thought I’d share this quickly - I watched a documentary on a 1900 sailing expedition where the Captain and crew ended up stranded in Antarctica for 12 months. The Captain said something like “It was more painful and difficult to live every day than it was to die. Dying would have been easy.” This just resonated with me on so many levels!
I have found myself changing my mind quite a lot about what I do and don’t want. If I get some bad news, like the cancer has still spread despite the treatment, or if I start feeling too many side effects, I ask my Oncologist for a break so I can have time to think clearly and work out what I want to do.
It might help to have a think about things for a little bit and work out what “quality of life” means to you specifically. For example, are there any things you do regularly that you love doing? Are there certain things about your health that you think you might be able to live / not live with? Are there any “deal-breakers” (as in things you absolutely can or cannot live with or without)? What are the little things that are important to you on a daily basis?
I also learned that there can be lots of ups as well as downs! I’ve had some amazing experiences since my diagnosis (and that is probably due to me living life in a more care free way than I ever did before, as I have nothing to lose now!).
In terms of the disease progression, I think it would be a good idea to speak to your Oncologist about this, as different types of cancer can all spread differently and at different rates.
You might also benefit from talking to a palliative care or Macmillan nurse, as they have these discussions with others regularly and can have some really helpful insights and information. I had one - not only does she help with the practical stuff like pain relief ideas and prescriptions but I find the nurses more easier to talk to about my real feelings around death and dying than any of my Consultants.
I hope this helps a little bit, sending hugs xx