Hi Julie
Firstly, I’m sooo sorry to hear of your recurrence.
I’m not understanding why, if there is no spread to the lymph nodes, do you have to undergo chemo?? Is it because there is more of a risk of spread with the particular type you have so requires a “belt and braces” approach?
You mentioned your recon options are limited due to radiotherapy. Is this because there was skin damage from your first treatments? What are you reconstruction options then?
I understand being unable to have recon whilst undergoing chemo, am thinking it’s mainly because chemo can affect the ability to heal and fend off infection.
With regards to the issue of whether to go ahead with a double mastectomy, surgeons don’t like to remove a currently healthy breast unless they feel strongly that it would be for the best, or if a patient elects and insists themselves to have it removed.
I opted to have a mastectomy as opposed to lumpectomy with my !st breast aged 47 (2006) and I was pre the time of sentinel node testing when it was routine to carry out a full axillary node clearance at the same time. All mine were clear after path exams. I desperately wanted recon at the same time to immediately replace the loss so to speak, knowing how badly it would affect my personal confidence especially still being a single person. However, due to a change in surgeon (my previous was happy to carry out implant but retired) then a miscommunication with the new surgeon as to my desire for simple implant recon as oppo to self tissue, it didn’t happen. So I resolved myself to being without for a whlie but had it in mind for the then not too distant future and at least the whole thing had chance to settle down.
BUT. . . , and another however, now being more vigilant about breast examination of my remaining breast, I found a small lump in that one, further towards the armpit this time. I brought it up at a routine check-up appointment for my removal side that was soon after finding it. Was immediately sent for an ultrasound scan which showed a group of cysts that the ultrasound doctor said didn’t feel were anything to be concerned about. My consultant/surgeon was more suspicious and booked me in the following week for a core biopsy. This at the time was only 7 months after my 1st mastectomy so I wasn’t too concerned, quite blazee in fact, I couldn’t possibly have anything nasty again so soon!! But thank goodness for his suspicion, dilligence and uncomfortable digging about beneath this group of cysts, because sure enough, he found something else - that came back positive!!
I dare say I could have had a lumpectomy but I didn’t even give the surgeon chance to go into discussion about that because my immediate reaction was to GET RID.
Soooo Julie, that was a second primary and a mastectomy not even 9 months apart. I’ve met and heard of other women developing a primary in their existing breast at varying times after.even though there is no familial history as in my case. And my neighbour actually elected to have a double mastectomy even though her other breast was clear, though it took some persuading her surgeon to do so because, as I said before, they don’t really want to remove a seemingly healthy breast unless they feel it’s absolutely necessary.
Due to a number of very unfortunate circumstances of the following 7 years, I wasn’t in a position to be able to undergo reconstruction until last year. Still didn’t want any of the various self tissue recon procedures, didn’t want the extra scarring to the actual breast area and part of the body the tissue’s taken from, the extra healing time for extra wounds, extra risk of infection plus risk of the tissue being rejected or failing once transplanted.
Sure implant has its downsides - the skin is very thin and delicate, doesn’t have the same warm feel of a tissue one and may possibly need replacing.
It’s all a hugely long, lengthy procedure and a long commitment time wise from the initial expanders being installed, regular inflations over 5-6 months, replacement with silicon op, settling or draping time 3-4 months before nipple recon can be done. Then once that’s healed, the “icing on the cake” of nipple tatooing. I’m only at the stage where I’ve finished inflations, ready for silicon replacement.
I don’t know if you are single Julie but I personally would recommend anyone who is to have recon and have it as soon as possible. Being without boobs for 7 - 8 years has meant I’ve felt unable to enter the “dating opportunities” due to lack of confidence with body image issues and any thoughts of intimacy were a no no. Because of that, I feel I’ve lost years of a possible happy, close relationship and it’s been very lonely despite having lots of friends - not the same as having a good loving partner though.
Good luck and speedy healing
Delly xx