I have had my lump removed (2.2cm, clear around the area), but had cancer (micro-metastases) in one out of three lymph nodes tested, so had to have an ANC last week, awaiting results. I have been told that if no further cancer is found in the lymph nodes than chemo will be up to me, I will have to have radio either way.
Are there any websites that I can input my profile and it will give me the percentages on reacurrence based on my situation?
Many thanks for any suggestions.
Fiona
Hi FionaLiane,
If you would like to give our helpline a call after the bank holiday weekend I’m sure the staff will be able to help you. Calls are free 0808 800 6000.
Take care,
Jo, Facilitator
Hi FionaLiane
I was in a similar predicament with rads - there was no evidence it would help but could have it if I chose. Hardest decision of my life. I decided not so that if there was a recurrence I still have that to throw at it. I came on here for support but felt quite harrangued as a result. One lady called me a wuss! Obviously your decision over chemo is very different but I would just like to wish you well and feel sure the decision you make will be right for you. Just as mine was right for me. Gather what information you can from sound sources - the experiences of others doesn’t always help!
Good luck
Kahren
I was in exactly the same situation as you - 2.8cm lump, clear margins, one micrometastasis in the sentinel lymph node, and was offered a choice of EITHER axillary node clearance OR additional radiotherapy on the armpit OR chemo.
I chose chemo in the end because I didn’t want more surgery, but only after a lot of agonising as i had been deeply anti-chemo from the start.
In the end, my surgeon convinvced me by showing a recent study from Holland on outcomes for women in exactly the same position - early stage cancer, ‘favourable’ tumour characteristics, micrometastasis - who either did or didn’t choose to have chemo - there being no standard protocol for micromets, because it’s only fairly recently that they’ve even been able to identify them.
Anyway, after five years it showed a 10% higher rate of disease-free survival for women who did have chemo, and that convinced me. (it was, however, only one study, albeit a large one)
According to my oncologist , in my particular circumstances it translated to a 7-8% increase in my chances of staying disease-free, but that’s still significant. I’m now about to do my last chemo -FEC6 - this week, and it’s been hideous, but I’m glad I’ve done it, if only because if the cancer does come back I won’t always be wondering if the chemo would have made any difference.
There is a genetic test that can be done to see if your cancer is likely to respond to chemo, but it’s very expensive - a couple of thousand pounds. I didn’t do it because my particular tumour was of a kind the test doesn’t work very well on, so it was likely t ogive an inconclusive result.
But generally, in terms of reducing the risk of recurrence, chemo does not have a huge effect -7-8% is probably as much as you can hope for, and that means the chemo only helps 7 or 8 people out of 100 - for the rest it has no effect at all, which was somethnig that really did my head in. There is no way of knowing whether the chemo has worked unless thee cancer comes back, which means that it HASN’T worked.
Chemo is truly horrible, and takes 18 weeks out of your life - but it’s the best they’ve got to increase your survival chances. As I reach the end, I’m glad I did it, although I probably wouldn’t have said the same half way through.
Fiona, I agree with Cybele, generally I wanted to know i’d done as much as possible and if that meant hair loss and a difficult few weeks then it was a small price to pay in my view, I actually found chemo ok, I managed to continue working whilst running my home and looking after my 4 year old daughter, the same with rads. I’m not saying I didn’t have rubbish days because I did, but there were more good than bad. Whatever you decide you have to be certain you can live with the decision and not regret it further down the line. My tumour was grade 2, 19mm so quite small and ER+ 8/8.
Hi Fiona
It is such a difficult decision to make, isn’t it? I had one node affected, and chemo would have given me a 2.7% extra survival rate on an already 90% over 10 years. My misgivings were in part, because a colleague was suffering heart and blood problems due to breast cancer chemo she had received some years previously. I felt had to weigh up that extra 2.7% against the risk of permanently damaging my health. The colleague in question, though, has never regretted having chemo despite her health problems, as it gave her an extra 20% survival rate.
At the time, I found out on this site that some ladies had had a Ki-67 test, which tests the tumour for the proliferation rate of the cancer cells. This test is part of the Onco-Dx test, which you can have privately, as mentioned by Cybele, but the Ki-67 test is increasingly being used by oncologists, and is even now on the PREDICT tool.
So I asked my oncologist for the test and it came out low (8%), so he agreed that chemo would not be the best option in that case, and suggested that a 2 year course of Zoladex injections along with 5 years Tamoxifen, and finishing with an extra 2 years of Letrozole would be the better option as I was pre-menopausal at the time.
The Royal Marsen (where I was treated), have always said that I had a “low risk” cancer, but should the cancer ever come back, I will not regret my decision. I did what I felt was best for me at the time.
Incidently, I found ringing the BCC helpline helped to clear my head around the different options, and I am grateful to the helpline and this site for all the help and information I have had since my dx.
I wish you the best of luck in whatever decision you feel is right for you. xx
There are 3 or 4 websites with calculators and I drove myself mad inputting my statistics into each one and getting different answers from each. The problem with them is that breast cancer is not just one disease, so what you are getting is a generalisation or average across all the different types of breast cancer. Really, the best person to ask is your oncologist, but after you have done as much research as you can bear to do. Because s/he will (or should) know the relevant figures for your sub-type.
And don’t be afraid to ask to see the consultant rather than the registrar if you want to have a detailed discussion. I had a great discussion with the lovely registrar I was seeing where I basically said “I get that you are a medical oncologist, not a grade 3 triple negative breast cancer oncologist. So this is what I want to know and I know you know how to find out the answer, but I don’t expect you to be able to tell me today.”
I know you asked for a calculator: here is the NHS one:
for chemo - you tick third if your poposed regime has a drug with “tax” in its name, otherwise tick second.
But can I give you some advice that you didn’t ask for. I have spoken to so many women at the Haven and Maggies Centre and in various waiting rooms and we all seem to fall in the end into one of two categories. We are all trying to get control back over our lives and our futures. Group X decides “I am going to throw absolutely everything at this disease so that if it comes back I will know it is not my fault” Group Y decides “I want my life back now. I am not going to poison every dividing cell in my body for months on end, just in case, when no-one can give me a straight answer as to whether it will even make a meaningful difference”.
There is no right answer, just one that for each of us is more right than the other, given our disease statistics and our personal circumstances. It’s an emotional decision as well as a rational decision, and we can be driven by hope or by fear. But there is no right answer. And that’s the hardest thing, because we can’t control this and we will never know whether it was the right decision.
My decision? Group X. But I have met so many thoughtful and courageous Group Y women and I would never say that they were wrong.
Hi
many thanks for all your suggestions, this has been really helpful. I have done the predict test and will phone the helpline on Tuesday to discuss further. If I have to make this choice (ie no more cancer is found) then I will also discuss this with my consultant and oncologist. When I started on this path I was terrified to have chemo, but the more I have read the more I realise it is another possible step to recovery, however awful it may prove to be.
thanks again.
Fiona x
It’s funny Fiona, I know when I was first diagnosed I thought I could cope as long as I didn’t have to have chemo, over the course of the next couple of weeks I found myself wanting chemo, it’s a funny old road. But please don’t be afraid of chemo, a lot of people are absolutely fine with it x