I was diagnosed with invasive ductal cancer following a routine mammogram. I had a wide excision and 7 lymph nodes removed in October 23. The lymph nodes were all clear but as well as the estimated 17 mm (which turned out to be 20mm) tumour DCIS was found to be 49 mm with no clear margins with more invasive within the DCIS. I had further surgery on 29th January and received the results yesterday. Histology showed DCIS was now 59mm still with no clear margins. I’m 71.
My surgeon said that as I have larger breasts if I want to conserve my breast, he can offer one further surgery to try to clear the margins but as he has already removed a lot of tissue and he will need to remove a lot more to be sure which will further deform (his word) my breast. If my breasts were a size or so smaller he wouldn’t have offered a choice.
He has left the decision to me and said to think about it and let him know. I then had some time with my nurse to answer more questions and explain things further. They have been very honest with me and given me lots of information to consider.
My head says mastectomy rather than another attempt to clear the margins with the possibility of still needing a mastectomy, especially as I have large areas of calcifications and the DCIS they have found was thought to just be calcification. I had 2 previous surgeries on the same breast in the 80s which were described as pre cancerous which is what DCIS was known as at the time.
My heart, however, says have another try and keep the breast even though it will be a very different size and shape and harder to disguise. Also, my nurse said that sometimes they do the mastectomy and find that they could have cleared the margins.
I think that I have made my decision but wanted to hear the experiences of others. My team seem to be erring on mastectomy but as it’s not cut and dried they are leaving it to me. My nurse even gave me a softie and a drain bag.
Hi there @holly.52
I haven’t been in your shoes so no words of wisdom, but I think I’d go for a mastectomy. If the surgeon fails to get clear margins again, they’ll be left with no choice. It seems like you’ve already been through a lot. If you have a partner, what do they think? Hope you’re doing well and whatever you decide, I’m sure it will be right for you x
do think about wearing a breast form to level you up if you are trying to clear margins and conserve as much breast as possible, trulife and evenly breasts do good forms to level you up. I had uneven breasts for 6 years post op and still do because my levelling up surgery 6 years later was botched and I now have to wear a form on that breast instead to level me up still. Would you be able to have mastectomy with immediate reconstruction? Or is that not an option I just wanted to let you know there are so many more levelling up bra forms about now that are very much improve from the chicken fillet types that were all that was available a few years back so hopefully this helps you a bit Shi xx
Hi @holly.52
Sorry to hear that you are having to make this decision, and that you have been through so much treatment.
I can’t help ypu make a decision but can share with you as i have just been through the same experience. Having had DCIS in 2020 that was successfully treated with a lumpectomy and radiotherapy, last year my annual scan showed DCIS in my other breast. I have had two surgeries this year so far neither have been successful, in removing the DCIS. My consultant and the multidisciplinary team have advised a mastectomy as they aren’t confident they will be able to clear the area, i could have another re-excision or further investigation, like yourself.
After lots of research and looking forward i have decided to opt for a single mastectomy with a DIEP reconstruction. This hasn’t been easy but my thinking is, the odds of the re-excision being successful are diminishing and even if i had a successful 3rd re-excision i would be concerned about DCIS being in my breast, if it wasn’t successful then i would still have to go through the mastectomy. This feels right for me at this point but if you feel able to go for the 3rd re-excision and as you say have larger breasts that can cope with another operation that might be the route to take.
Thinking of you and which ever decision you make it will be right for you, as there is no right or wrong xxx
As everyone on here says it’s very much your decision about what you feel suits you best.
My experience was similar in that initial findings through mammogram and scans pointed towards lumpectomy but then the MRI showed 2 tumours of about 18mm and 20mm each. My consultant said she would do the lumpectomy and attempt clear margins but that what breast was left would be inevitably different in shape and size. Plus if no clear margins then it would be go again and have a mastectomy.
I was asked to think about it and let the team know my decision. I was also told about a website called Flat Friends, all about women opting for mastectomy and to go flat, no reconstruction. I found it really helpful.
I opted for single mastectomy. The loss of the breast, since first diagnosis, has never really bothered me. I just wanted the cancer gone and whatever treatment achieved that was what I would go for. I had my mastectomy 4 weeks ago and opted to go flat, again for me, the focus was on the cancer and recovery and I didn’t want to go through reconstruction, It’s a personal choice and everyone is different, but I didn’t want further surgery and messing with other bits of the body to create a new breast (which my surgeon said would be “quite passable” but not like the original ! LOL!). I also didn’t want to compromise my shoulder (right breast) as I play a sport where I need good shoulder mobility. I wasn’t keen on a silicone implant plus at my age (64) was a bit concerned about the aging process on the natural boob whilst the other one looked pert and 30 years younger !
I am very happy with my decision. no regrets. I’m healing well and the softie (named Betty !) does the job fine for going out places. Most importantly, for me, I am cancer free, good clear margins achieved with no sign of spread into the chest area or adjacent tissue.
I hope my story, along with the others you’ve had, helps you in some way reach your decision.
Whatever you do, all the very best wishes for a speedy and cancer free recovery.
Update
Thank you so much for sharing your experiences ladies. Many comments mirrored my own thinking especially being worried that there might still undetected cancer lurking after a lumpectomy and the thought further surgery for a mastectomy if it wasn’t successful.
After much research, talking to the nurses on here, to a member of the team at Maggie’s, others who have been through a similar experience and Flat Friends (thank you for the suggestion) I decided that a mastectomy was the best option for me and the option I can live with even in the unlikely event that they could have cleared the disease with a lumpectomy. I was fairly sure that I didn’t want a reconstruction and when I saw my surgeon to discuss my decision he said that the reason that it had not been mentioned at my results appointment was that it was unlikely to be successful anyway for various reasons that he explained.
I’m booked for a single mastectomy without reconstruction on 15th April. I’m terrified but am satisfied that it is the right decision for me at this time. My surgeon is very mindful of the cosmetic results of surgery and has done a great job so far. He has a great sense of humour when appropriate and said with the type of incision he intends to use he would try his best to give me a lovely smiley face scar.
Thank you for asking Summer-Sunshine. Surgery went well apart from the drain not working and being very sick for 24 hours. Doctor came and removed all the outside equipment and replaced it so it’s working well now. I was able to see the wound which is very neat and not nearly as big as I anticipated. He promised a smiley face scar and that it what I have. Haven’t been brave enough to look in the mirror yet.
My surgeon came to see me in the operating theatre reception to make sure that the mastectomy was still what I wanted. I asked him if he thought that a 3rd excision could possibly clear the cancer to which he replied that he honestly didn’t know so I confirmed my decision. He smiled and squeezed my shoulder. A member of his team had already said that because of the size and uncertainty she felt that mastectomy was the best option for me.
I was discharged on Tuesday afternoon. Was rough yesterday and slept for most of the day but a little better today.
I have a tremendous sense of relief that although I will need further treatment the cancer is out of my body and no further surgery. No regrets about my decision.
do think about wearing a breast form to level you up if you are trying to clear margins and conserve as much breast as possible, trulife and evenly breasts do good forms to level you up. I had uneven breasts for 6 years post op and still do because my levelling up surgery 6 years later was botched and I now have to wear a form on that breast instead to level me up still. Would you be able to have mastectomy with immediate reconstruction? Or is that not an option 
