Just wondered if there is anyone out there who has lost their reconstructed breast due to recurrence in that breast. I had mx and LD flap reconstruction in Nov 2009, and now have two cancers in the reconstructed breast.
I have been told that I will lose the new breast and the back muscle. I will need some kind of reconstruction of the back muscle, then radiotherapy, then think about reconstr. after another year.
If there is anyone else going through this, or been through it, I’d love to know how you got on
I do not share your experience, but just wanted to say that’s crappy! I had a recon earlier this year and know how much you had to go through to get that breast. I am so sorry. Sending you a virtual hug.
Hi, So sorry to hear your bad news. I am just wondering how you knew you had cancer in the recon? I also had an LD recon in Nov 2009 and at all my check ups since then my armpit has been felt and my other “healthy” side examined, but not the recon itself. I had a mammogram and ultrasound on just the healthy side at my annual check up. Did you feel a lump or was this discovered through a routine check up? Thanks.
Hi Annie
Sorry to read yor news- I too have lost my recon due to a local rcurrence. I only finished chemo on 16th june and was back in theatre by 31st August
My recurrence was in the skin and chest wall. I had a big op where the affected skin was removed (22cms in total!!) and a flap was made from my tummy to close up the gap. I am nowvery lobsided as I was a 38d/dd pre-dx. I had intensive radiotherapy after the scars had healed but the skin mets had already started regrowing across the scarline. Just praying the rads have done the trick now- so far scans have been clear…
What happened with you- skin mets also? Are you also triple negative? Feel free to pm me any time.
All the best xx
Gingerbud; what a terrible experience for you. It really is shocking to have gone through so much to get the new breast - seems such a waste of everything. Mine is simpler I think. I only had DCIS, but it was fast growing and covered my whole breast - so it needed to come off. I wasn’t given any chemo as ‘there is nothing left; so there is no risk’. Went to the doctor in June and presented a tiny lump in breast but was told it was nothing. I left it as I was caring for my elderly and dying father two days a week (dying so painfully and distressingly that if he had been an animal we would have put him out of his misery - but that’s another story), and working full time…blah…blah. So, when father died in October, I went straight back to the breast clinic as this lump had grown. Within 4 weeks I was having chemo - stage 2, grade 3, two lumps. I can’t have a reconstruction as I have nowhere else to get it from - so I’m really p****d off as that breast was my only chance. I’ll have 3 FEC, 3 Tax, Operation, rads. So, although my lumps are ‘attached’ to the skin, I’ve just re-read my letter and I am only a stage 2, they can’t be mets I don’t think. So pleased your scans seem clear…lets hope the rads have sorted it. Are you having a full recon? Do you know what sort?
Lola, I felt one of the lumps, but the other was hidden. Knowing what I know now, I will insist on (and pay for) a regular ultrasound on the new breast (if they can find a way to make one for me). Even if I have to sacrifice the cost of a holiday, or borrow on the mortgage, I’m not taking a risk again. Don’t panic though, it is rare for a recurrence after an mx, just be vigilant!
I haven’t lost my LD reconstruction but thought I might when I had a recurrence, fortunately it was high on my chest wall so was able to be removed without too much disruption. I can imagine how you must be feeling, reconstruction is a big op and then to loose it, so sorry.
Seems even having a mx is no guarantee it wont come back, 4th time for me.
Jan, is this the 4th time the cancer has returned to the same breast?
Annie, I am soo sorry to hear what you are going through. I have had ld recon and ended up having 5 surgeries (so far) because me body wont accept the implant…i still dont have it!!! after reading your thread im worried sick about it returning to the same side. I too, had high grade DCIS that was widespread and didnt have chemo. I had already considered paying for an ultrasound on a yearly basis and NOW its something i will definately do. I think its disgraceful that we are having to pay for something to ensure we remain healthy!!!
Its the 3rd time in the same breast but it may help for you to know the first time was 25 years ago so not done to bad. I had mx with reconstruction in 2005, recurrence on opposite side last year, this year on same side. I have always found the lumps or a dent as it was one time myself but have always been followed up with an ultrasound.
I have not had chemo either, I did ask why and was told that I seem to be doing well without.
I took Fermara for 12 months which obviously did’nt work so I’ve been changed to Tamoxifen so see if that helps.
I too have just lost my recon. Short history lump + rads in 2000. New primary 2005 MX + LD recon. Dec 2010 two lumps in recon, thought they were fat necrosis but no… Had a mx of the recon last week.
I am going for full results on Thursday but talk so far has been that I will have chemo this time. I am trying to understand what they would base the decision on?
Its very difficult finding people with similar experience. Any advice would be helpful.
Thanks
I’m having chemo first (3FEC, 3 DOX+Herceptin), then op to remove the recon., then rads, then tamoxifen injections for 3-5 years. The explanation for having chemo was that this will ‘kill off’ any stray cancer cells floating around the body that haven’t yet formed a mass large enough to be detected. Their concern was that simply addressing the lump you CAN see doesn’t prevent another one forming as (in my case with a fast growing cancer ie: only had mx 6 months before a tumour had formed) there is a high likelihood that there are cancer cells elsewhere - so chemo seemed a sensible option.
I had MRI, CT and bone density scan to check for other tumours. Is this what you are getting results on, or is it just the details of the lump (stage and grade)?. Mine is stage 2, grade 3 1.6cm, plus a tiny lump.
Let me know what your results are - it does sound like we’re going through the similar thing and it is helpful to me to find someone going through it at the same time.
Been for results today and one lump was 1.5 cm and other tiny both grade 2. However consultant now says I dont have to have chemo but will have hormone therapy. I know thats good news but I feel like I am not doing everything I can to make sure that it doesnt come back again.
Seeing oncologist on Monday to discuss further. I know I should feel really pleased but I dont. I feel like I am just being dismissed again, go away get on with your life…
I know this must sound mad but I guess its because it feels really confusing to me?
Any advice would be helpful.
Thanks
It may be that your tumours have different pathology to the other people’s who you’ve heard about (HER2, ER+…) and it will all become clear after your appointment on Monday. But …if you’ve understood everything but still don’t feel confident by the end of your onc, meeting, don’t forget that you have a right to a second opinion. Most oncologists are really OK about this (and even offer it) as they don’t want anyone to feel compromised. It also won’t delay the treatment as it isn’t at all unusual to ask for this.
You could prepare yourself by deciding what hospital you would like to have a second opinion from. Have a look at their websites and look up the oncologists - at least this might help you feel you are doing something, as Monday must seem like a long time to wait.
