Type of surgery. Advice, stories, any help gratefully received. Got to make a big decision

Hi ladies


so the good news is that oncotype says no chemo  yay!


the bad news is that after second margin clearance op after lumpectomy, the margin is still not clear.  Have a lot of DCIS.   Therefore, various options.  Bear in mind that we are booked to go away camping from 9 July to 23rd but in this country.  Everone really looking forward to this.  Surgeon wants to operate on 13 July.


option 1.  Do another margin clearance.  Positives:  I’ve healed really well, would be back and doing and am relatively large of nork so there is stuff to take.  I could also just come back with husband from hols and go back with him two days later.  Negatives.  Margin still might not be cleared and part of me wants this over with now.


option 2. Mastectomy no reconstruction.  Positives - fairly straightforward.  Scar would be same as I have now just on flat chest.  Unlikely to need rads.  Negative, there might not have been any need as an extra 1 cm of margin would have done it.  Having seen pics of mx and seen prothesis - all looks ok to me.


option 3. Mx with immediate reconstruction using LD.  Seems bloody complicated and may throw archery into nothingness.


option 4. Mx with some sort of implant mesh


option 5. Mx with reconstruction involving stomach DIEP.   Would be off work for ages, seems very major surgery.  Tbh. Scares the wotsits out of me.


any golden nuggets, ladies.  Part of me just wants to ‘keep it simple, stupid’ and just get on with my life.  I will also be having to take Letrazole and have read some horror stories on the forum about that.  Just think i sort of want this to be over and done with.



What a nightmare re the re-excision. How stressful for you. I also had a lumpectomy which failed followed then by a mx.  I don’t want to scare you but consider this - your team obviously couldn’t see the extent of your DCIS from the scans (not uncommon) but that means you might have other patches of DCIS in your breast that they haven’t identified. This is why extensive DCIS tends to indicate a mx is required (that’s not a medical opinion, that’s just my experience) - might be something to raise with your surgeon?  Of course, I do understand the dilemma that just another small shave might be enough … could they give you another MRI to see what, if anything, shows up before deciding? 


I have had a DIEP done.  It is a big op but really not nearly as bad as I feared. You will be in hospital for 1 week and then need to rest at home (not in bed though) for another week. After that you can begin doing things slowly but no chores or driving for at least 4-6 weeks and you will feel fully normal after about 3 months.    You will have a very long scar across your lower abdomen and that is the trade-off you have to be willing to make.  It is quite painful for the first week.  But you will have a breast which is your flesh and is warm and soft to touch. It will feel normal to you, although you will not have sensation in the breast itself.  You may have to have your good breast adjusted to match at a later date (also true if you have implant or any other recon). The good news about the DIEP is that although it is a bigger time commitment initially, when finished it should be permanent and maintenance free, whereas implants may require replacing in a few years time.  Friends I know who have had implant reconstruction also say it feels unnatural to them in that they are aware of having a foreign object instead of a natural breast. No doubt that lessens over time and it is a much simpler operation.  Just note you can’t have an implant if you are having radio afterwards.  


At the end of the day it depends how important it is to you to have a breast. Personally I wouldn’t prioritise a 2 week holiday over a permanent breast reconstruction but quite rightly absolutely everyone feels differently about these things and prioritises accordingly. I would recommend the DIEP but you may prefer a simpler path. In any event I hope you find the option which suits you best. Good luck xxx