I am a 31 year old Mum of 2 who was diagnosed on 21 April with a 5mm, grade 2 IDC and due to extensive intermediate grade DCIS I had a subcutaneous mastectomy on 9th May. There was no lymph node involvement and nothing further found,so…on 15th May I was told I am all clear (well the closest to it!)…my lovely Consultant gave me a predicted survival of 94% over 10 years!!! - (yippee) with no further treatment but…with chemo and Herceptin this would be increased to 96%…I thought it was a no brainer,but now I am no so sure…I was told I would have a reduced dose (FEC) over a reduced timescale,kind of kidded myself it would be a walk in the park but having visited Bristol Oncolgy Centre yesterday I have been told no such thing as reduced dose,this is the real mccoy and the hair loss,the possible heart problems,mouth ulcers,sickness…you’ve all heard it before…and I know I have nothing to moan about, infact last night was the first time I have cried about any of this…I know I am lucky but now feel why is 94% not enough!!!. My Consultant has always said it is my choice but is it?..I have kids…I know I have to give it my all but it would almost be easier if the margins were more marked!!!..The rest of 2008 is well and truly written off and for 2%!!!..is it enough?
They wanted to start in the next 2 weeks but I have requested my tissue expander and implant be finished first as I am not going to risk infection…and again I kinda don’t get the hurry…
What do you think guys, somebody,anybody…what would you do.
I am sorry to bash on and understand fully that many on these forums would be delighted with my prognosis and so please accept my apologies now if I seem a bit bratish!!! -I probably am.
This kind of situation comes up regularly where you are sort of borderline. . Your choices boil down to whether to increase your odds by 2% and suffer side effects of chemo or take a chance that your cancer won’t come back. We all know how horrible the short term side effects are but they are short lived. More importantly, what are the long term risks and are they high, such as heart problems? Not having much idea about chemo I would guess that the oncologist wouldnt have offered you something that had a real bad risk attached to it as your odds are so good to begin with.
I was the same with a very good prognosis but mine choice was for radiotherapy or no radiotherapy. With radiotherapy I could increase my odds by a few percent but suffering the effects of radiotherapy. I was at a complete loss as to what to do as you rightly point out, the side effects from all the treatments is no joke. It would have made life so much easier if I was distinctly in one group or another where I wouldnt get the choice as so many others haven’t. However, after several sleepless nights, my son who is 16 said to me that if I didn’t take the radiotherapy and my cancer came back, I would feel very guilty that I didnt take what was on offer. He was right. I would be more upset that I didnt do everything I could. So I went ahead with radiotherapy and if my cancer returns, at least I won’t have the guilt to deal with!. Tough call, isn’t it? You ask what would I do? I play everything safe and would take everything on offer.
Sorry to hear about your diagnosis- but you are in the right place for help and support, advice or just somewhere to let off steam. And you’re not being bratish at all - well no more than the rest of us have been at one time or another!
Unfortunately this is a decision that only you can make - as you are well aware. I was dx in Nov last year with 3cm Grade 3 tumour, 5/11 nodes involved. Had mastectomy and node clearance in Nov 07. My 10 yr prognosis was 30% with no further treatment - with chemo, rads and herceptin this went up to 86%. An easier decision for me!
I have now gone through all the chemo and the radiotherapy - and am about to start the herceptin.
You don’t say what age your kids are - but given your age I’m assuming they are youngish? I have a 21 yr old and a 10 yr old (I’m also a lot older than you - 47).
I know you are going to get all sorts of different answers here about the 2% - but I have to say that if I was faced with your prognosis, knowing what I know now (hindsight is a wonderful thing lol!) - I wouldn’t have the treatment. This is completely different advice to that which I would have given 7 months ago - I’ve always said take anything that is offered - throw what you can at it to get rid of the big C - but I think you have to weight up quality of life as well.
I hope you find the answer that is right for you. I’m sure others will be along with much more sensible advice than mine!
Hi Leelee,
Its difficult isn’t it, had very similar results to you, mastectomy no lymph node involvement,grade 2 lobular cancer.
Stats are also similar and like you I had to make decisions.
I am 53 and was told that without any further treatment there is a 92.1% chance of no further recurrance.
However because there was only a 1mm clearance between the tumor margin and the chest wall in that area there was between 5-10% chance of localised recurrance 3 weeks of rads would take that down to 2-3%, so I did the rads.
I was also offered tamoxifen for 5 years which would take the stats from 92% up to 94.4% basically a 2.4% increase.
I have decided against the tamoxifen.
Simply looking at my stats if 100 women take Tamoxifen 92 wouldn’t have a recurrance anyway and are taking a drug they don’t need for 5 years, 2.4 would benefit and the 5.6 would still get a recurrance.
To be fair I did give it a try for 12 days but felt like an ‘old lady in a fog’ with various fairly minor side effects but just not me so that was it.
All the best as you decide it is difficult but its a decision that you have to be happy with and make it in your time with a clear mind and all the info you need, don’t be rushed.
I noticed at the end of the posting you ask ‘What would you do’ I would stick with the 94% let us know what YOU decide.
All the best
Magsi x
Leelee
I am also being treated at the Bristol oncology centre. You are the first person I have found on this site who is going there. I was given the choice about chemo but the improvement in the stats was more significant presumably because my tumour was a bit bigger and a grade 3. I did decide to have it but had a lot of problems and it was suggested that I consider not finishing the usual course of 6, so I stopped after 4. I found that decision very hard to make and I do feel that we could do with a bit more guidance from the experts sometimes.
I am not sure that I would have decided to have the chemo with such a marginal difference in the stats but you are a lot younger than me and have young children to think about. Only you can take the decision but maybe you could talk about it further with the breast care nurse at the oncology centre and/or the nurses on this site. You also need to consider the fact that to get Herceptin you need to have chemo.
Whatever you decide, all the very best. Maybe our paths have already crossed and we are unaware of it!
I just feel this whole “grey” area is a little unecessarily cruel - bit of a “Sophies Choice”.
I spoke to my BC nurse yesterday who has advised I make another appointment to see my Consultant, she seemed to understand the difficulty in this situation and admitted that to gain 2% against Cancer to lose it against other aspects of longterm health seemed a little irrational…I am also going to ask whether lifestyle changes could make up any of the 2%, i.e. vits, minerals, exercise, oxygen bar (well, who knows!).
I think I also need to ask whether the 5% of cancer reocurrence is primary or secondary in the first instance…if 3 of that 5% is made up of localised reocurrence wouldn’t I then be undergoing this same treatment???, that being the case, why have it now?.
When I started on this journey my attitude was…and I quote " I will take anything they offer me, death is non-negotiable"…now I feel I am peering into the dark and waiting for someone to turn the light on…I really, really, really do not want to have chemo but if its the sensible option I will do it, I just need someone to convince me…I don’t want to live my life with regret for either decision.
Anyway I am going to put this to rest now for the bank holiday weekend…I went out yesterday and spent a horrendous amount of money and felt so much better…just need Bristol City to make it to the premiership and that will top off my mini high…and then…the decision!!!
Anne - I am treated at Frenchay, are you?
Margaret - My boys are 6 and 4…the other thing I have to consider is my eldest has Cystic Fibrosis, so my survival and his and linked…having said that a lowered immunity around some real nasty bugs and bacterias might just be enough to see me off anyway…good Lord, what bad luck would that be.
Hi Leelee
Have just picked up your post. Have the same problem, am 46 have 2 year old daughter (adopted from China last year ) had 11mm grade 1 IDC OR pos tumour WLE node neg done in Jan. Have been given same option of Chemo or no Chemo at Derriford Hospital Plymouth. Yes this is cruelty and in USA this is resolved now using the Oncocyte-dx test which looks at prognostic factors in the tumour and estimates if the tumour is likely to spread or not and how useful chemo will be or not. my research has made me feel that we lag behind in this country in these areas. I have my Histo report ( luckily I work in the Histology Lab so have inside knowledge ) and am looking at it carefully to help me decide but after 3 weeks of trying to decide am beginning to get so tired of it that I dont care anymore whether I go for chemo or Zoladex, both seem horrible to me. Your tumour is very small at 5mm but is a higher grade although the differences are small on the scale as 3-5 points is grade 1 (I had 5 points) and 6-7 points is grade 2. This scale measures the mitotic activity in the cells and mine was low with a score of 1 out of 3 which I interpret as the tumour cells are not dividing much and so not growing very fast which pushes me against chemo. However my tumour is of non specific type which is the most common type of invasive ductal carcinoma as far as I can see and has an intermediate prognosis compaired with some types such as tubular which my mother had with a better prognosis. This is another angle rather than just the size and grade which I am finding helpful in making my decision and I have now to look further into this cell type to make my final decision.
Stay strong