It looks as though my chemo has managed to shrink my tumour, and I can expect surgery sometime late February. As I also have ADH in my “good” breast, I am considering bilateral MX. I had BC in 1991, then new primary in 2012, and never want to go through this again if it is possible to avoid it.
I have been offered immediate LD Flap recon on my “bad” side. No possibility of implant, as I had rads in '92, and apparently not enough body fat for anything else. (Never thought I was that thin.) For the other side, my choice is between implant and LD Flap. I am not sure if I would have to wait for the implant, should I choose to go that way, as I believe my PS only does the flap. It also looks as though the bilateral LD Flap might give better symmetry.
Can anyone help with their experience of bilateral LD Flap recon? Were you happy with the results? Is it too long and painful a procedure? Are there any questions you wish you had asked before surgery? How on earth does anyone manage to sleep whilst undergoing the healing process? (I cannot begin to imagine how you would be able to get comfy with scars both sides, front and back.) What was it helpful to take into hospital - and what do you wish you had taken with you?
I am feeling really scared about my forthcoming op, so any advice would be appreciated.
Through this service you could be put in touch with a volunteer who has had a similar operation and would be prepared to talk to you about their experience. To find out more phone 0845 077 1893 or email ukpeersupportteam@breastcancercare.org.uk
Hiya
I,ve actually just posted the title is MX with ld flap reconstruction if you can find it.
I did have a small implant too thouh I believe.
I think I posted under…undergoing treatment for BC.
Im only a week on and it was not half as bad as I imagined.
Hope you can find my post and that it answers some of your questions. If not pm me and I,ll try to help.
Lavendersun xxx
hi there margaret,
I had double mx with immediate ld flap recon in aug 2011 after being found positive for brca1 gene.I had already had lumpectomy and rads on right breast after being diagnosed with bc in 2010.The op went well,had muscle taken from back and expanders in aswell.The first night after the op i had catheter in but this was removed the next day and I was able to hobble along to the toilet carrying my four drains! For the 1st night they wake you every hour to check the implants have taken so you wont get much sleep anyway.I found it comfier to sleep upright with loads of pillows,and I slept this way for a few weeks.The 2 front drains were removed after 1 week,the back drains a further week along.Ayear later the expanders were removed and replaced with implants.I am very happy with results although because of the rads the right side is a little misshapen,the left side is better than before the op!!I recently had nipples tattooed on,so am now finished and all is well.The lasting effects include back tightening upon exertion and a little discomfort in my right boob now again,a small price to pay for the peice of mind.All the best with your op,I hope youll be as pleased with the result as i am,just take your time recovering,I went back to work on a phased return 4 mths after the op,
All the best,
Di.x
Many thanks for taking the time to reply to my post. It is reassuring to hear that it wasn’t as painful as expected (Lavendersun) and that you are pleased with the results. Always good to know what to expect. Second time round for me, too, Di - although I was really lucky in having 21 cancer-free years between diagnoses.
Did either of you have node cleararance? I am quite worried about this, as have heard it is far more painful than the actual Mx. I will have to have clearance on BC side, but hope to avoid it on the “better” side. I am still waiting to hear about genetic counselling, and probably won’t qualify because I wasn’t able to provide enough family history. My cousin died from BC in her forties, but we are not in touch with most family members now so I don’t have any more details. Have recently heard that counselling may be available without this, if you were very young on diagnosis (I was 31 first time round, and it was hormone negative).
I think as you have had BC twice and TN and were under 40 when first diagnosed you will be able to get genetic testing for sure. Ask your surgeon or oncologist they should refer you.
Because I had BC at 42 and got I again now (14 years later) my Breast Surgeon has referred me and I see somebody next Tuesday to discuss.
I am having chemo at min to shrink then mastectomy but going to discuss bilateral when I see him in a couple of weeks as certainy don’t want this bloody disease back again
Hi sdfmeg
I am due to see plastic surgeon at the beginning of February to discuss bilateral mastectomy. I was diagnosed with TN bc in January last year and underwent WLE x 2 and node clearance on right side followed by chemo and rads. I was negative for BRCA1 and 2 but have a strong family history and like you do not want to go through all of this again if there is something I can do to avoid it.
Although I am not sure yet what type of reconstruction I will have, my breast surgeon has alluded to the fact that it would very likely be ld flap. I too am therefore interested in other’s experiences of the op and of recovery times in terms of time off work etc.
Carabel
I had breast cancer in 1994 and found another lump in the other side last June. I am a gene carrier and have had 6 cycles of chemo followed by a bilateral mastectomy, full node clearance and immediate reconstruction using a DIEP flap. The op was 6 weeks ago and wenT very well. I was in theatre for 12hours and in hosp for 5days. Had 5 drains in and a catheter but still managed to get out of bed the next day. It was not painful, but breasts felt very tight and i have a massive scar across my tummy where they took the tissue.
My recovery has been good. I needed to have fluid drained from my tummy twice. I have just started driving again and going for a walk every day, but cannot do any strenuous exercisefor another few weeks. I was told that recovery takes 2-3 months in total. I have to wear sports bras 24 hours a day to help the shape of the new breasts and massage them with E45 to help soften them.
I have to have radiotherapy for 3 weeks in feb, but I am hoping to ease back into work a few hours a day by Easter. I am struggling with the emotional side, can’t seem to stop crying about everything when I should be looking forward to cancer free time?
Hi
I had bilateral LD flaps and small implants about 18 months ago. Had issues accepting the ‘look’ but that is touched upon in another thread.
As for any advice regarding healing. The best thing I read before my op was to take a V pillow into hospital with you. It really helped me to feel sort of ok at night time and I used it for some months back at home as well.
Hope all goes well if you decide to go down this road.
Sarah xxx
Hi Margaret,
i had immediate double ld flap reconstruction in Aug 2011. Was very pleased with result. Altho right side shrunk slightly due to rads, which was unfortunate as both matched perfectly prior to rads. I too was very scared and anxious re post op discomfort, but I managed the pain not too badly. I also had lymph node clearance on right side which was more painful. When I came home I got an elbow pillow from Argos which helped me sleep at night. Was a long op but am glad I had it as I believe was less traumatic for me than waking up with no breasts, I essentially looked the same. I would say take some peppermint tea with you and shower gel. Best of luck with your op try not to worry.
Regards
Bravocharlie1
Hi Margaret,
I had bilateral mx with immediate ld flap recon March 2012, I wanted to feel the reconstruction was still part of me this is why I chose the ld flap. Its been an emotional year but defiantly getting there now. Although I have had to have fat transfer to both breasts as muscle as shrunk in both, I am due to go back Monday to see PS to see if I need another fat transfer to plump them out to what I was originally. After the op I coped much better than I thought I was determined to get out and home to my three children my youngest was 18months old. I recommend a v pillow and some nice girly smellys to make you feel fresh and womanly. Pain was ok with pain relief, by end of day two I was taking paracetamol. I had 6 drains in, came home on day 4 with two drains in.I went back to work 3 months later. Keep strong and positive. This was my second time of cancer, you can get through this you can get through most things.
and thank you so much for your posts. I did try to post last week, but lost my Internet connection and what I had typed just disappeared.
Unfortunately, I have had a setback. At my most recent meeting with the plastic surgeon, he told me that he was only willing to do the mastectomy and reconstruction on the side that has cancer because I have had chemotherapy. He said that he would do the other side some months later. As he would give me no idea when that was likely to be, I now feel that my best option is to try for a bilateral mastectomy with no reconstruction. I’m gutted because I had talked about the bilateral Mx almost every time I saw a health professional following diagnosis, yet this was the first time they said they wouldn’t do it. My surgery is supposed to take place 27th February.
The single recon would leave me with a B cup on one side and a D on the other. I would have to wait months, and possibly years before I could have the other side done, and there is no guarantee that the surgeon would still be available. I think I would prefer to be flat and symmetrical rather than bigger one side than the other and having to go through yet another major operation. I am gutted, but since last July I have been concentrating on the fact that all this would be over by the summer. I really don’t think I can cope with much more of this.
Thanks again for telling me about your experiences. It’s good to know that LD flaps and immediate reconstructions work for some people.
Sorry that is to good news for you and yet another decision to make when we don’t need it.
I am seeing my surgeon on 20th and was going to request bilateral with immediate recon although I only wanted implants if poss. Really don’t understand what chemo has to do with it. I am still on chemo last one 4th March and hoping for surgery soon after that. I think you are like me had this bl**dy BC twice ( mine TN).
Better prepare myself for a let down. Can you no get a second opinion ?