Following my primary diagnosis of bc in Aug 2006 and subsequent treatment, I have recently been told I have secondary bc (bone mets). I am also a childhood survivor of Ewings Sarcoma. I am now half way through having 12 weekly sessions of chemotherapy & Avastin. I find treatment an extremely anxious and difficult time due to bad memories, etc. I often feel like giving up but know I can not because I have four beautiful sons aged 3, 5, 6 and 15 who need me. I’ve asked my bc nurse what happens if this chemo isn’t very successful, to which she replied we’d try another type. And this process will continue for as long as I let it. My question is, how do I know when it is OK to say no to more treatment? Will the guilt ever leave me if I finally say I’ve had enough? Will my husband and children feel angry at me for giving up? They are used to me being so strong, but I know there will come a time when it will seem that they are being selfish to me for not letting me go. Does that make any sense? I know it’s early days still, but these are the thoughts that really bother me. I don’t want to be poisoned or operated on beyond recognition! I want to be remembered for me and not a science project gone bad. I suppose I want to die with dignity and wonder when that point is exactly. Perhaps nobody has an answer, but it’d be nice to know others have the same thoughts. LLx
Hi Loralee,
Sorry to hear of your secondary diagnosis. While you are waiting for your fellow forums users to reply I have put for you below the link to BCC’s publication regarding secondary bone cancer, which I hope you find useful to read.
Could I also suggest you join the Secondary Live Chat session where you can ‘talk’ to others going through similar experiences in real time. There are 2 sessions for secondary live chat, the first being every Tuesday evening between 8.30pm and 9.30pm and a new service we are offering which will run on Wednesdays between 11.30am and 12.30am. I have put the link below for you to the section of the website which discusses live chat and how to join.
breastcancercare.org.uk/community/live-chat/
I hope this helps. Kind regards,
Jo, Facilitator
hi loralee, big hugs to you, i seem oncologist tomorrow and i will be starting chemotherapy next week,i know exactly where you are coming from it does start to be a vicious circle, but when i look at the little faces of my children, i have to do it all again , you really cheered me up the other day with your positive message so remember we need to support each other
love galen xxxx
Hi Loralee
I can really identify with what you are saying/feeling. I have a 3 year old daughter and got my secondary diagnosis summer 2008. I’ve now had two lots of chemo (once with primary dx and once with secondary dx) and am on herceptin which I believe is beginning to give me permanent joint/bone aches/pains. I will fight to stay on herceptin for as long as I can because it does seem to be keeping the cancer at bay (only bone mets so far), however I know that it could fail at any time. What do I do then? (Rhetorical question!) I am thinking the same things as you … of course I want to be around for my husband and daughter for as long as possible, but there will inevitably come a time when … At the moment my position is that my body will say no to treatment before my mind does, and so the decision will effectively be taken out of my hands, but that may change. And in the meantime what lies ahead is that at some time the most effective treatment to date (hercptin) will fail and then I will be put on a succession of not-so-effective treatments with who knows what side effects. Not a pleasant prospect!
Isn’t this such a terrible situation to be in? And so infinitely sad.
I agree with galen - we must all support each other through this.
Best wishes.
Alison
Hi Loralee
sorry about your diagnosis and feeling so awful at the moment - my mets are in lymph, bones and liver and for me this has meant that I had only a few months inbetween treatments ( some get a lot more) but my understanding of bone mets ladies is that they are often just on zometa witch is a 15 minute infusion every three weeks - I am on this as well and find it reallk OK - hopefully those with bone mets will reply to you - and there are a lot who are stable for many years…take care , Jayne
I was having a glass half empty moment ladies. You are right. I get ahead of myself sometimes and it makes me feel miserable. I wish somebody could tell me the chemo is working – it’d give me much more umph to get through six more! LLx
Hi Loralee
I was diagnosed with the primary in Jan 06 and with bone mets May 08. The onc have me the choice of chemo or not but I could’nt get the Herceptin without having the chemo. He would’nt advise me what to do and said it had to be my decision. I decided to have the chemo and 1/2 way through he said to me, I’d made the right decision as new results from trials were indicating that people in my position were doing really well. I finished chemo Oct 08 and I’m now on Zometa and Herceptin and I’ve had a great year- long may it continue.
I know I’ll have to have more treatment in the future some time but not yet!
Keep on going, your a long way off decisions yet.
Love Sue x
Hi There
Hope you don’t mind me butting in but it’s a good question.My dear friend recently died after several years with secondaies. She kept on having chemo as long as she felt she could tolerate it but the breaks were becoming shorter and eventually the Onc made the decision to stop treatment. She lived for a few weeks after that. The thing is she always asked that question too - she said the answer had to be when se was too exhausted to carry on.
She had a reasonable quality of life all through the various treatments and chemos and that is why she kept on having it. At times the break was as long as a year. During those times she really lived with no barriers.
Sendng every best wish
Love
Jane x
Wishing you well and hope that you have a
Hi Loralee
I was diagnosed with bone mets in 2002 two and a half years after my initial diagnosis. My onc suggested chemo and I had 6 cycles of FEC. (After I said I would never have any chemo again). I then started Herceptin and an oral bisphosphate (Bonefos). Here I am at the end of 2009 continuing on Herceptin, now on intravenous Pamidronate and although the bone mets have progressed over the years and I have had further chemo (Taxotere and Capecitabane)and radiotherapy for pain relief I have had long periods when they were stable. I’ve recently had a vertebraplasty on 3 collapsed vertebrae which has helped tremendously with pain relief and once again I feel the disease is under control and things are stable.
I remember those dark, worrying days in 2002 and I remember having thoughts similar to yours. My children were 17, 14 and 12 and I never dared imagine that I would still be here, and had the joy and pleasure of seeing them grow and mature into young adults.
My onc initially gave me a prognosis of two and a half to three years but is now quietly optimistic … and so am I, although I do have days when I feel down, terribly sad and lonely. I don’t know what the future with bring and I know that the Herceptin will stop working evenually and I’ll be offered other treatment but I like to think that I shall know myself when the time comes to stop treatment - only time will tell.
Sorry if I’ve rambled on but hope you find this helpful. Wishing you lots of luck and strength to deal with this dreadful disease.
Love Judith