Recurrence in recontructed breast?

Does anyone else ahve experience of this please? Diagnosed April 2005. Mastectomy and immendiate tram flap reconstruction June 2005 followed by Epi CMF chemotherapy. Oncologist (on trial) found lump on 21/6/11. Ultrasound and FNA showed malignant cells. Waiting for cone biopsy on Monday and Bone scan and CT on Thursday. Initial treatment looks like WLE and radiotherapy.

Hello

Yes I have got a recurrence in my LD reconstructed breast. Last September I had an op. to remove it from the muscle and its back again now, I am starting chemo next week for the first time, really scared, have had so many operations to no avail so hopefully will have more luck with this.

I always thought that the whole idea of a mastectomy was to prevent it coming back, seems I thought wrong.

Take care.

Jan

Hello, yes me too
I was dx in 1997, had mx and tamox for 5 years. dx again in 2009, this time grade 3. like you jan, lots of surgery in between - but at least i had 12 years in between diagnoses. the second dx i had WLE, chemo, rads, oophorectomy and now on aromasin.
how are you both doing
apols - can’t do all punctuation as broken arm!
take care
monica x

I had my first diagnoses 25 years ago, had lumpectomy and rads and had no trouble for 20 years, not so many pills and potions around then either. My first recurrence was in 2005 which is when I had my mastectomy and recon, managed another 4 years but have had 2 recurrences since hence the chemo, must admit I am suprised I have escaped having it for so long. Hormone theraphy did’nt work for me obviously.

Take care.

Jan

wow janice 25 years ago! i bet you were just gobsmacked and appalled when it came back.
its all so different now isn’t it - i saw loads of change after 12 years - must have been much more marked after 20.
how old were you when first dx’d
mon x

I was 38, I did’nt feel at the time it was such a big deal, had a 12 and 13 year old to keep me occupied. Never thought for a minute it would come back, especially when I got to 20 years.

I find the treatment more scary than the cancer, how daft does that sound.

Jan

doesn’t at all!
i was also 38 when i was first dx, my kids were 11 and 9. i found it difficult at first because of the kids, but yeah, found treatment hard. this time treatment was physically tougher but i was emotionally much stronger. its just the illness that keeps on giving, isn’t it…

Happened to me twice!
First DX in 2000, MX and LD recon.
2003 recurrence in skin on reconstructed breast.
2010 spread to nodes in axilla and pectoral muscle and on lung.
Unfortunately also spread to spine and sternum :frowning:

Thought I’d got away with it after ten years…
Xx

Thanks for your comments. I didn’t dream that it would recur in the reconstructed breast. If anything I thought it would be the other side.

Sweetanimo how was the axilla spread diagnosed?

On teneterhooks now re scans this week

Fingers crossed it is confined to the lump!

hi kmans
it is a blow when it comes back, but as you can see, a few of us - and i know a good few more - are doing OK. i’ll be thinking about you as you go thro your tests, let us know how you are getting on
love, monica xx

Thaks Monica - will report back

Hope you arm is recovering well!

x

I’m amazed how common this is. Not that I’d never heard of the possibility but somehow I thought it would be very, very rare to the point that I would have to be very unlucky if it did come back in the reconstructed side. Since my recurrence, I’ve spoken to or read posts from lots of women with the same experience so it’s obviously less rare than I thought.

I too had a recurrence in my reconstructed breast. I just felt a very tiny lump and ignored it until my next check up was due, they did a biopsy there and then, an ultrasound and the results were back that day. Had to have the implant removed, total mastectomy and Auxillary clearance and all my nodes were affected with local invasive spread. SO all the treatment I had 5 years earlier obviously did not prevent it coming back. Had AC chemo and Arimedex , but 5 years on and I am fine. My latest CA153 b/t showd no increase, liver/bone/lungs ok. have infact just been discharged from hospital care to my GP. So girls, there is hope! Here is to another 5 years without any problems.

Hi again,
I just had some discomfort in the axilla and assumed it was to do with the implant being past its sell by date. Went to see GP who referred me to Breast Clinic where they did U/S and FNAB which showed some dodgy cells. The bone CT and MRI confirmed the mets.

I’m doing well on Prolia and Femara and one met has gone and the others have significantly reduced in size.

Good luck with your results. Keep us posted.
Xx

Thanks Birgit and Sweetanimo

Keeping fingers crossed!

Hi Kmans, I just wanted to say hello - not at all co-incidentally, I stumbled across this post earlier on when I was driving back home from the hospital, having had a FNAB and core biopsy on my reconstructed breast. I gather from your posts that you are having tests this week too. I very much hope that whatever they find it is all very treatable - if not nothing at all - and that you are managing. Naz, x

Im so scared. I had my reconstructed breast 3 months ago, and i couldnt get used to it, trying not to look at it. Im not worried about how it looks but reminds me that im in the edge of death.im 35 and never expected something like this, after being very consious about food and exercise whole my life, no family history as well.Now everyday im thinking that it will come back very soon and i wont see next year.
I think you guys are more stronger then me and coping well. How did you recognise the lump in the re cons breast?i can not feel anything at all!!

hello,
Manco, when you can, check the reconstructed breast around the edge of the recon area, like you check the other breast. its worth getting to know how you feel now, both for starting to feel safe about it and starting to feel confident you would pick up any changes. I found both my lumps just doing routine checks in the bath.
lots of us have periods where we feel under threat, but if you are feeling vulnerable, maybe a chat with your bcn would be helpful. xx

Naz, I’m sorry you are in this position and i hope you’ll let us know how you get on. I’ll be thinking about you xxx
mon

hello,
Manco, when you can, check the reconstructed breast around the edge of the recon area, like you check the other breast. its worth getting to know how you feel now, both for starting to feel safe about it and starting to feel confident you would pick up any changes. I found both my lumps just doing routine checks in the bath.
lots of us have periods where we feel under threat, but if you are feeling vulnerable, maybe a chat with your bcn would be helpful. xx

Naz, I’m sorry you are in this position and i hope you’ll let us know how you get on. I’ll be thinking about you xxx
mon

Oh Manco

It doesn’t sound as if you’re in a very good place at the moment and struggling to come to terms with what’s happened to you. Have you spoken to your BCN about how you feel? Have you been offered any help or counselling?

It appears to be another postcode lottery as to whether it is recognised that BC messes with your head as well as your body and whether on-going counselling is offered - not just about dealing with an altered body image, etc, but also help dealing with anxiety so that the risk of recurrence/new primaries doesn’t become the ever-present ‘monkey on your shoulder’.

Don’t get me wrong - I’m not for a minute suggesting that there isn’t a reason to be anxious or fearful, or that it’s in any way ‘weak’ or ‘unreasonable’ to be anxious - just that for your own wellbeing, finding a way to cope with it so that it doesn’t take over and dominate your life would surely be a good thing?

I’m still mid-treatment (mx + recon, chemo - one more to go, rads & Tamoxifen) and so don’t know yet how I am going to react once rads have finished. What I hope is that I recognise the risk and anxiety of BC coming back, but that I’m able to mentally put those feelings in a box for most of the time and put it at the furthest dusty reaches of my mind - to be taken out, opened and examined when I choose to do so. Obviously that is easier said than done, particularly if your risk of recurrence is high.

Maybe I’m odd, but I’ve decided to see if I can think of living my life as a risk sport! I drive almost daily on a dangerous stretch of road, I ride feisty and lively horses, I’ve been known to jump out of planes and abseil down high rise buildings. I intend to carry on eating the things I enjoy and drinking alcohol. Some of the ‘risks’ I take I have a choice in, others I don’t. I take certain precautions to minimise risks, but not every single one (some I can’t afford or are impractical, some take the fun away!)

There are many things that could injure/maim/disable/kill me at some point in the future - despite my dx and current treatment BC is still just one of them.

Time will tell if I’m able to do this. I hope so - to live in fear is horrible. If you are living with anxiety to such an extent that it is disrupting or stopping you from enjoying your life, I would urge to to seek some help to see if you can start to ‘put it in a box’.

Take care and sending hugs.

Dx