Breast mastectomy and reconstruction

Hi. I’m new here though been diagnosed since 2012.

I had a recent mastectomy and breast reconstruction using tummy tissue. Unfortunately my reconstruction failed and had to be removed a few days later due to issues with blood supply.

Anyone else with lupus have a similar experience?

[PMRpro]

I can't speak to lupus patients in particular - but what I do know is that my husband did a lot of work with blood flow in breast reconstructions in the hope of improving results and it was horribly common for them to fail within a few days. He told me that if I was ever in the situation he would beg me not to go through it.

You are by no means alone - and most of the patients didn't have lupus. All I can do is send gentle hugs.

[smudge1980]

Hi freewheeling, so sorry to hear your free tram reconstruction failed. I know exactly what you've been through with the surgery and everything else. I also have had a free tram reconstruction. I had a lumpectomy for breast cancer in 2006, followed by 14 sessions of radiotherapy. Unfortunately we didn't know I had sle and Sjogrens then. The radiotherapy mummified my breast, leading to the reconstruction in 2008. Luckily my surgery worked. So far the only problem I seem to get is slight pain from fat necrosis under my scar near my arm pit. Surgery was suggested to remove this, but then I got my lupus etc diagnose and the surgeon won't touch me now unless there's no other option. Have they said what's the plan for you going forward? Wishing you all the luck in the world. What you've been through is so traumatic! Try and stay strong, Patricia x

[Hidden in reply to smudge1980]

Thanks for your replies.

Smudge, No one seems to think my reconstruction failure was due to lupus though not being offered an alternative reason . Considering other types of reconstruction but because I had pneumonia and a pulmonary embolism (again were these due to lupus?) post op I'm treading carefully. Got an apt with my breast surgeon next week to see if i can get any more answers about what has happened and to discuss other options.

I don't have the typical lupus (SCLE) symptons. Was diagnised when I developed a rash in early 2012 but have not had recurrence. Was diagnosed with uveitis in 2011 which was subsequently attributed to lupus.

At diagnosis of DCIS in breast earlier this year I was on azathiprine and tacrolimus which I immediately stopped and replaced with prednisolone. Mastectomy and reconstruction were in September. Still early days but feel I'd feel more in control of things if I had a few answers.

Thanks for your kind thoughts.

[smudge1980]

I can understand you wanting answers, I wld to. Your bound to be very cautious going forward. My rheumatologist thinks the radiotherapy attributed to my now been UV sensitive. Interestingly I wasn't before the radiotherapy. But it's difficult to get straight answers. My surgeon took 18mths to decide to give me the free tram reconstruction because of the extent of damage to be taken away and there was a good chance it wldnt take. I was very lucky it did. There's different types of reconstruction and I'm positive your surgeon will find one right for you, one that will work. Best of luck freewheeling. It'd be great if you stayed in touch to let me know how you get on, or even to vent if your having a down day X