Hi
I’m hoping some of you will help me with some ideas and advice as to my way forward.
I am 37 year old mum of two young children. I have high grade DCIS.I had a WLE a few weeks ago and another one today in order to get ‘clear margins’. I must wait three weeks for these results to see if they have clear margins. The consultant has said that if the margins are not clear he will advise a masectomy.
Thing is - I’m sure this is what I want anyway.I have read that with high grade DCIS + rads the chance of recurrence is 12%, but high grade DCIS + mastectomy the chance of recurrence is 1%.In fact I want a double mastectomy.
I fear that my consultant thinks this is unnecessary. I know that if he has got clear margins this time he will not recommend a mastectomy at all.I know the current school of thought thinks DCIS is overtreated. But I don’t think I can cope with the fear of the recurrence all of the time especially after losing my mum to BC when she was 48. I also know my consultant is very good and highly respected so I am torn!
CONFUSED!!!
All advice and thoughts VERY gratefully received,
LOve Freddie xxxxxxxxxxxxx
Dear Freddie
I completely understand why you want a mastectomy and if I were in your shoes I’d have one too for all the reasons you have stated. (I have in fact had a mastectomy but had no choice as had a large lump and widespread DCIS too). However, I do strongly believe that the decision should be yours and that if this is what you want then you should really push for it. I’m going to push for a mastectomy on the good side as I cannot live with the 10% risk - I feel this is much too high. I mentioned this right at the beginning of my treatment and was told that we’d deal with the bad side first and then think about the other side at a later date. I don’t see why this should be any different for you. I have a real fear of recurrence and live with it on a day to day basis right now and it’s hard. Also hard for you is having lost your mum at such a young age. You have a right to heard and make sure you are and don’t be scared to even if this consultant is highly respected.
Good luck
Ruby x
Hi Freddie
I had double masectomy, but was advise just to have lumpectomy had grade 1 stage 1 cancer managed to persuede surgeon to do my option, was glad i did as it would of come back in left breast and again later in the right, not sure whether it gives peace of mind though as with me it,s done my head in ever since, good luck with your decision, all the best with treatment
Lornaxxx
Hi
Thanks to you both for sharing your experiences. I truly means alot.
Mmmmm- this BC has done my head in too and this is relatively early days!!
I was beginning to think I was mad for wanting something that others seem is ‘too drastic’ . I suppose I’ve got the joy of waiting three weeks for the ‘results’ to syche myself up to my final decision.
Thing is- I seem to wait for weeks for the appointment, wait hours in the hospital waiting room and then see the consultant for literally two minutes after all that!I will have to try and be ‘to the point’!
Love Freddie xxxxxxxxxxx
Hi Freddie,
I am not surprised you feel as you do, especially as you lost your mum at 48. Is there more family history of BC? and have you explored genetic testing for BRCA1/2. Just a thought but I wonder if they have a psychologist at your hospital. In some cases when women want a prophylactic mastectomy they are sometimes referred and maybe if you took this into your own hands and asked your consultant if he would like you to talk to a psychologist to confirm you want it for the right reasons it may work in your favour. Good luck.
Dawn
xx
Hi Freddie it does do your head in it really does.
I have to say that I have never felt really pressured in terms of time - I stay with my oncologist until everything is sorted i.e. all my questions answered to the extent where one day I knew he was going to the theatre and was supposed to have left the hospital before my appointment but he knew I wanted to see him and he didn’t rush me - he’s so good. It’s so important to feel that all of your questions have been answered - don’t feel bad about taking up their time that is their job and also about saying what you want.
xxxx
Hi
Thanks- i know i shouldn’t feel rushed, but i do every time. Before my op today, the consultant came round to speak to all his ladies and it was the first time I had a proper opportunity to ask questions. I kind of felt I was being a bit of a fussy nuisance. It was also only through asking today that I found out my DCIS was high grade.I did seem to ask more than others but still only spoke to him for a few minutes.
I’m also trying to get the genetic test done too. I have sent off the forms but was referred by my doctor. Apparantly this means it will take longer to get through the system. I was advised to get the cconsultant to refer me to speed things up but he wanted to wait and see what these results show first. He says it is likely I do have the gene but it won’t make any difference to the treatment?? The psycholgist idea is a good one though that I will pursue-hadn’t thought of that.
I haven’t got an oncologist yet as I haven’t had any other treatment as yet.
In some ways I feel terrible talking like this, because the consultant is very good,well meaning and well regarded as an expert in his field. I’m just not sure I’m getting what I want!Perhaps I am expecting too much and being too fussy??
Love Freddie xxxxxxxxxxx
Although my bc consultant said that a wle + rads would be the way forward for me as my cancer was caught very early, he also offered a mastectomy if that was what I wanted - which I did. That’s what I had and have never regretted it.
Hi,
Mine was high grade DCIS in 2007. I had a WLE with no clear margins so the Mastectomy was performed within a week of the WLE.
My Oncol said he was satisfied that removing the breast was the right thing to do, but did not want me to even think about removing the healthy breast.
I rang the BC helpline and asked to speak to someone who had, had DCIS. They put me in touch with a lady from Scarborough who had her DCIS …TEN years ago…She had also had a recon a couple of years after her Mastectomy.
The thing is, if she was ten years down the line with no problems on her remaining breast, well, that gave me hope that DCIS need not be a complete fear.
New facts and figures are being reported all the time, so I am just getting on with life and trying not to worry about BC at all.
I’ve been on Tamoxifen for two years now and hopefully that will help me.
Linda