I was diagnosed with invasive breast cancer on 29 Oct and had a mastecomy and lymph node removal (8) on 12th Nov. My results have been as positive as they can be with complete removal of cancer and no signs of spread to lymph nodes. I am now taking Arimidex and have been asked to make a decision on chemo (FEC). This has thrown me, I just wanted to be told you need it or you don’t!
There are a number of unanswered questions for me at the moment so I need these answers before I make a decision (eg Grade / HER2 Status / hormone receptive status). That sounds very rational doesn’t it, when I have my emotional head on I just think lets say yes as it (chemo) is another insurance policy! I would be interested in your thoughts and how any of you made the decision whether to have chemo or not.
You do need more information before being able to make a decision. My tumour was grade 3 and postive for HER2 so really I felt I needed to have chemo because the cancer was aggressive and because you can’t have Herceptin unless you have chemo. I am also on Arimidex as it was highly positive for oestrogen.
You can also ask for a prognosis with treatment compared to without, which I found helpful, although others have preferred not to know.
I would recommend that you don’t try to decide until you have more information as chemo may not necessarily be the best for you, depending on the status of your tumour. I have also found it very useful to discuss various things with the nurses on the BCC helpline.
Welcome to the forums, I am sure you will continue to receive lots of helpful advice and support from your fellow forum users, in addition as Anne said you may want to contact our freephone helpline on 0808 800 6000 where you are able to talk to one of specialist nurses in confidence about any queries or concerns you may have regarding your diagnosis or treatments. The line is open Monday - Friday 9am - 5pm, Saturdays 9am - 2pm Breast Cancer Care have recently published a Resources Pack which you may find helpful to read, it is filled with information to help you better understand your diagnosis, test results and the various treatments available. You can download it from the following link or you can ask for a copy to be sent to you via the helpline: breastcancercare.org.uk//content.php?page_id=7514 I hope you find this helpful.
HI Wendy just posted and lost my whole message !! in a nutshell I had a grade 2 18mm tumour one node involved. If I had no node involved I personally would not have had chemo but based on stats my long term survival was increased by 7% on chemo (10% combined taxomifen and chemo)
as Anne says you will have to decide based on your results. If its grade 3 or large then they would probably recommend it. My oncologist said that its offered to anyone who can benefit by more than 3% over 10 years. The choice is always yours
but they were my guidelines and as every case is different it will really depend on your own case.
I asked to see the stats but got myself really in a state wondering what to do and was focusing too much on statistics.
Wendy, I agree this ‘choice’ thing is not very satisfactory. As you say - if only they would tell you what to do, but I guess they’re all afraid of being sued.
You need to scout around for all the facts and ask the consultant those really difficult questions. And look in your library for: ‘Breast cancer husband, how to help your wife (and yourself) through diagnosis, treatment and beyond’ by Marc Silver - it is a mine of information and very readable.
My wife opted for a lumpectomy and removal of all the lymph glands on one side on the basis that they said she would only need radiotherapy afterwards. It went according to plan but then they said she ought to think about chemo. They made chemo sound a breeze with plenty of people carrying on working, but it has been 6 months of hell for my wife, and for what benefit? With hindsight one wonders if they only tell you at each stage what they think you can take.
*** Stop reading here unless you have a stiff drink handy…***
Now the really difficult bit - I guess BC forces us all to have to face up to the mortality facts. My wife is very positive about it all (you really have to be) but I am an engineer used to ‘worst case’ scenarios… She is 57 and had Stage 2 (early stage), 16mm BC, Grade 3 (aggressive) with 1 lymph gland affected. She is not HR+ve so not suitable for herceptin or any of the other drugs. The consultant and various websites agree the following for her:
risk of local recurrence in 10 years - 10%
risk of distant recurrence in 10 years - 30%
10 year survival with no chemo - 64%
benefit of chemo 5-10% (note this is not cumulative - it is 5-10% of the 64%)
so the 10 year survival with chemo - 67-70%
But what if she has only (say) 5 years? Is it worth having your life turned inside out with powerful poisons for 8 months just to gain a few days? She has had a rough ride with chemo (E-CMF) - severe constipation, piles, hair loss, hospitalisation with infections at the low point in the chemo cycles, but worst of all ‘chemo brain’ and being totally unable to work…
Sorry not to be more positive about chemo - after all the NHS is spending an arm and a leg on it.
I guess you will all get through it and live to a ripe old age, while it is me who will die prematurely - from worry!
Hi Wendy,
I was diagnosed in August this year with invasive ductal breast cancer, grade 3, 20mm and 9mm lumps found. Had a mastectomy and lymph node sampling (5) in September and they found one node cancerous. Onc said he thought all cancer had been removed but I was also given the choice of chemo. I decided to go for it. I think even if my lymph nodes had been clear I would still do it. I wanted to be totally sure that I had done everything I could to fight this awful disease.
I’ve just had my 2nd FEC chemo, got one more and then 3 tax. I hate it, but for my own peace of mind it’s worth it.
All the best,
Liz x
As others have said I think you do need more information about grade and her2 status and the statistical benefits before you can make a decision. Two suggestions: firstly ask your oncologist what he would recommend if it was his wife/partner/mother/sister with your kind of cancer; secondly remember that your cancer could recur whether or not you have chemotherapy now. But a key question might be how will you feel if your cancer does come back but you declined chemo? And the answer might be different if it comes back in 6 months, 3 years, five years or 10 years later…
I also wanted to comment on freddie43’s perspective. In many ways it was very refreshing to read your thoughts…the conventional wisdom is so often that chemo is worth it whatever. Though I’m not an engineer I am someone who always wanted to know the statistics and the reality. My initial prognosis in October 2003 was much worse than your wife’s…grade 3, 23 nodes, 40-50% 5 year survival, with chemo estimated to make about 5% difference. I really was not sure about doing chemotherapy…but I did…6 cycles of AC before surgery and then 4 cycles of taxotere afterwards. At the end of primary tretament my oncologist reckoned I had a 70% chance of recurrence within 3 years. It (the recurrence) came towoand a half years later (3 and a half after diagnosis.) Its a regional recurrence so far and I’ve done more chemo…vinorilbine and xeloda. I’ll soon be facing the decsion of whether to do yet more because the cancer is probably growing again in my chest wall.
I’ve hated chemo though in many ways I’ve been relatively lucky with side effects. I find endless fatigue the worse thing. I know the AC chemo didn’t work for me at all (the 23 nodes with cancer were after 6 cycles of that!) and I’ll never know whether the taxotere gave me some extra time before recurrence or whether it would have recurred at the same time anyway. I don’t know whether I will do more chemo now…probably will because I think I’m not brave enough to say no. Most people who refuse chemo go down the alternative route and thats not for me either.
Thanks Freddie for raising these issues so starkly. Chemotherapy is not a cure all, often not even a cure though I do think that for some people it prolongs life and for a few kicks cancer into remission forever. Thats what the stats are all about showing. It is just so hard to know how to balance quality and quantity of time. When I was first diagnosed it was a bitter pill to swallow that I almost certianly wouldn’t live into my 80s and 90s as I had expected till then. Five year survival felt dreadful. But now I really value the fact I’m 4 years on from survival and hoping for a few more. I was 54 at diagnosis, 58 now and to reach my 60th birthday would feel a real accomplishment,…when faced with incurable cancer- days, weeks, months of potential well time become precious in a way they were not when I thought I had many years.
Sorry Wendy…I’m rather hijacking your thread. Hope you can make a decsion which feels Ok for you. Remember that not everyone suffers that badly during chemo…you could try the first session and then stop it you changed your mind…nothing is set in stone.
I was dx with invasive lobular cancer + IBC - stage 2/3 on august 3rd. I chose to do my chemo first - for me it meant i could ‘see’ if it worked. After three cycles of TAC the Invasive LC tumour has shrunk from 1.8cm to just 6mm - so it’s definitely had an affect! I’m about to finish my course with three cycles of FEC.
the TAC and me were not good friends, however there were other ladies on TAC that were doing very well. One lady took “five days off” for recovery then spent the next two weeks visiting her grandchildren and great grandchildren in Scotland and Cornwall - and drove herself everywhere! (She was over 70 too and this was a re-occurrence after 10 years)
would i do the same again? most definitely. I have plans for the next thirty years and this cancer isn’t going to stop me.
I was diagnosed with invasive lobular cancer and subsequently LCIS in February this year. Luckily there was no lymph or vascular involvement.
I too was offered chemo which would statistically raise my chance of survival in ten years from 87% to 92%. I felt that this small (STATISTICAL) increase was not worth the disruption to my family and how I would cope with being ill. My fiance’s first wife passed away from secondary bc and his 3 children (who I now live with, along with my 3 children) had already witnessed the effects of chemo twice. My oncologist fully supported my decision, as have my entire family.
As everyone says, it’s your decision and yours alone - you must do what YOU want to do and what feels right for you.
I am now, after a mastectomy and immediate reconstruction, on tamoxifen (radiotherapy was not offered due to mastectomy).
I hope your treatment goes well and that you make the right decision for you.
I agree with everyone above but just wanted to add that even when lymph nodes are clear the cancer can still spread through your bloodstream (i.e.,as well as your lymphatic system). The chemo attacks cancer cells that may be in your bloodstream.
It’s just another insurance policy!
I chose to have it, awful as it was, and would have it again if I needed to. I have 2 young children & want to see them grow up - to me 4 months of feeling cr*p is worth it if it gives me 6% more chance of seeing that dream.
There is such a lot ot think about with this one…and I totally understand the fear and worries involved. I will try to be frank about my scenario, as I appreciated that myself, and hope you don’t mind.
A few weeks ago I posted a similar question, asking for advice on whether or not I should have Chemotherapy. Friends were reluctant to tell me what they thought I should do, and I didn’t blame them. My husband said he would support whatever I decided. On here, replies were supportive and yet encouraging.
One person asked me why I thought I should not have it. Her question really made me think. I felt a little defensive at first and my reasons were numerous; the hair, the time, the money, the illness…but all relevant to my life at that time. I put the percentages, statistics and degrees of likelihood to one side (as I already feel hit by a stray bullet) and weighed up:
A. if this came back would I look back and think “bugger, why didn’t I do it then?” or
B. It’s so random (me getting cancer) that there really is not much benefit for me and do I really need the hassle…
After weeks of being out of control it was not a bad feeling to be in the driving seat with regard to decision making. Nevertheless, eventually I questioned whether I really did ever have a choice. Significantly, the only person I did not ask was my 20 year old son. I’d left him out of the process and realised later that there must have been a reason I did that. Eventually a person I did not know very well asked me what my eldest would want me to do and I answered immediately “whatever it takes”.
I knew then what I should do.
I’ve just missed my second chemo because my bloods were low. My head looks like that of a baby eagle (fuzz/fluff) and I feel so very tired. But, I am happier than I have been in years. People said chemo was “do-able”. It is. I’ve no regrets.
Whatever you decide will be the right decision because only you know the answer,
Thank you so much for your practical advice and kind words which have given me a lot of ‘food for thought’, I am overwhelmed with the response. Thank you all for taking the time to share your thoughts and experiences with me, your responses have made me feel far less ‘alone’.
I (hopefully) will get all of the pathology results tomorrow so will be in a much better position to make a decision and will update you all. In the meantime, my best wishes go out to you all and your loved ones.