Hi all
Some of you may have read my posts on another thread so apologies for repeating myself!
After a complicated journey I have now been diagnosed with DCIS- non invasive/Stage 0. I have had one op to remove the area but need another as they haven’t got clear margins.The consultant has indicated that if they can’t get clear margins the next time I may need a mastectomy with immediate reconstruction.
I now feel as if I want a double mastectomy. I am a real worrier anyway and I know I will fret over any tiny lump I ever feel in my ‘good’ breast. If I’m going to have surgery on one I may as well have it all done. My Mum died of BC when she was 48 so I’m also looking into the genetic link. However I’m not sure my any genetic results would come in early enough for my decision. I also don’t even know if the consultant would be prepared to do a ‘double’ in the circumstances as I know many would feel this option would be too drastic for the diagnosis.
Any thoughts??
Thanks
Freddie xxxxxxxxxxxxxxxxxxxx
Freddie i was diagnosed last may with ibc which is one of the most agressive breast cancers - i had to have chemo first and during those 6 months always said that i wanted to have a double mastectomy as i didn’t to have to go through all this again… (i come from a family with a dreadful history of bc all of whom have died…)
however when i finally saw the surgeon again (i never saw him during chemo - only on the day i was diagnosed…) he said he would be unable to do a double mastectomy as i had no evidence of disease in the other breast and that could only be removed if countersigned by another surgeon - and as it was a small hospital they didn’t have another on site… I was annoyed as the bcn must have known this was the policy but had never told me 
Apparantly a double mastectomy takes longer and has a longer recovery time. (You also then have to be careful with both arms incase of future lymphoedema etc…)
hi freddie
I had grade 1 stage 1 cancer in 2006, was told i only needed a lumpectomy i decided to have a double mastectomy, which when it was done i had pre-cancerous cells in the other breast, i have no-one in my family who has had breast cancer, i know it,s a huge op but go with what you feel is best, i never regretted having mine done, all the best with your decision
Lorna xxx
1 Like
Hi
Thanks for the comments. I’ve started to apply for the genetic testing so it will help. possibly it could make the decision for me.
Seasider- your experience is exactly what I wonder about. I appreciate that it is a huge op but perhaps it’s better than long periods of ongoing treatment,worries and paranoia?
Theresa- I suspect my consultant will be the same as yours and feel that this may be too drastic. Might have a fight on my hands if I decide it’s what I want!!
Love
Freddiexxxx
Hi Freddie,
Genetic testing does take a while to complete but as you have low grade DCIS there shouldnt be any reason why you cant wait until you get those results before opting for a mastectomy - in fact I think I would insist on those results beforehand because if you have a mastectomy now and then find out later that you have the gene you would have to go back in to have the second mastectomy so two ops instead of one. Most hospitals will grant a ‘risk reducing’ mastectomy if you explain the anguish not having one will cause you and if you are firm with them!!
Clarabelle xx
Hi
Thanks for all the ideas and advice.
I actually don’t know whether I have high or low grade DCIS. All I’ve been told is that it is DCIS/ non invasive but they haven’t got it all yet.I know when I go in for my next op, if it’s anything like the last time I shall see the consultant for about 10 seconds. He is very good though.
WHo should I discuss my issues and worries with? I’d like to talk to my consultant in more depth but he is so busy, I seem to be in and out within 2 or 3 minutes. Would the breast cancer nurse be better- I guess she’d have more time??
Love Freddie xxxxxxxxxxx
Freddie,
you can book to see your Consultant any time you wish, just ring up and explain that you need to chat with him prior to your op and make an appointment. And of course the same goes for speaking with your Breast Care Nurse but I have found they always say " I will have to speak to Dr so and so and get back to you on that" so now I go straight to my Consultant if I have any questions and he is more than happy to speak with me.
Clarabelle