Hi all,
I had my results today after second surgery (2 lumpectomies). Was another set back. Margins are still not clear of DCIS which is as it stands 4cm + and by now they found 3 invasive grade 2 ductal carcinoma foci. Also have micrometastasis in the lymphnodes. The surgeon said that although a third lumpectomy could be done she would recommend a mastectomy and I think I agree with this as this DCIS of mine is very scary (does not show on mammogram nor mri nor US, is high grade and seems to happily convert into invasive cancer).
So the question is now should I have a simple mastectomy and go flat on one side (or even both) or have reconstruction? My gut instinct tells me to just face it, go flat and hope I can do the psychological adjustment to feel well in my skin again. I am a single parent and it scares me hugely, but likewise I dislike what can go wrong with silicone implants or the major intervention of a flap reconstruction and all the scarring that goes with it. Anyone else has had to make similar decisions? Many thanks.
Well crap. This kind of decision definitely sucks loads to put it mildly. I can tell you about my experience and questions to ask yourself but nobody can tell you what to do. That’s up to you. At any rate I decided to do a double mastectomy with a delayed reconstruction. The reasons for the double mastectomy is that I had busy, very large breasts, my lump was already at 32mm and considering I had yearly mammograms it was scary to think that it wasn’t detectable the year before, and I never ever wanted another mammogram. I have scananxiety and just wanted to get through this and then be left alone as much as possible medically. Anyway I’ve never regretted the decision and don’t miss my real boobs at all. Healing from the double mastectomy truly wasn’t all that bad. Within two weeks I was pretty much back to normal and a week after the surgery I could do the basics around the house to keep it going. I had no complications in healing, no huge pain issues, and could start chemotherapy as soon as my oncotype score came back. My reconstruction occurred six months after my mastectomy. Although I was thin I still has enough fat to qualify for a DIEP and am quite amazed how large these new boobs are. I wouldn’t have minded smaller to be quite honest but whatever. They look fine. The left one is not perfect and could probably use some minor adjustments but it looks good enough to where I may just skip the phase 2 of reconstruction and go straight to nipple tattooing. Recovery was a pain in the ass although not particularly because it was painful. But I had to be still a lot longer than with my double mastectomy, walk hunch backed for a week, deal with six drains the last of which wasn’t taken out until three weeks after surgery, and just generally be bored out of my mind. I’m five weeks out today and have got a small seroma at my left abdominal incision but it doesn’t hurt, everything has healed pretty well I think, and I’m back to a normal life. Questions to ask yourself are 1. How are you going to emotionally cope with being monitored from this point on? 2. Is the thought of being flat something you can see yourself being okay with? 3. If not, are you okay with implants and the fact that eventually you’ll have to get another surgery to replace it 4. If not, and you want a DIEP, do you have help for at least the first four weeks because you’ll need it. Good luck with making this decision. I know it’s a hard one and we all hate you have to in the first place. But I do think your surgeon is right in getting your cancer out asap and the mastectomy is probably the way to go. But if you don’t want to deal with a reconstruction right away know you can put it off. Heck that might be the time frame you need to decide that flat is the way to go for you. I liked being flat actually. I am content with having breasts again but I think I could have been perfectly content not having any at all either.
The other thing I wanted to mention is do you know if your surgeon sent all your separate invasive cancers for oncotype scoring? I know you got one back and if I remember correctly it was a 12. But are your other tumors considered satellite tumors of your main one or are the separate entities? If separate they could possibly have different oncotype scores and it would be worth asking your surgeon about that to see what they think.
I know you must be stressed out of your mind and I hate even bringing anything up but unfortunately you’re in the discovery period and must insure they miss nothing so that you get the best possible care. So this would definitely be a question I would pose just to be on the safe side.