Hi I have just been diagnosed with cancer for the second time (first time 2011). This time it has come back in the reconstructed breast (I had a diep flap reconstruction in Dec 2011). I am now seriously thinking about having a double masectomy.
Is there anybody that has been through this that can offer any advice.
Jane
Hi Jane
In addition to the support and shared experiences you will soon have here please feel free to call our helpline talk your thoughts and concerns over, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
Take care
Lucy
I have sent you a message
Hi Michelle
thanks for your reply sorry to hear you were not happy with your reconstruction did you have a diep flap ? I was the opposite really pleased with mine so that is why this has come as such a shock.
Basically I found a hard lump a couple of weeks ago so went to get it checked out had ultrasound & mamogram followed by biopsy which came back as cancerous which was a bit of a shock even my consultant was surprised as he said it was very rare for it to come back there as there was no breast tissue - call me unlucky ! Anyway this week I went for all the various scans pet ct mri and bone scan and thank god they came back all clear so good news that it hasn’t spread. I now need to decide what I want to do my consultant is against me having a double masectomy but he said he will do it if that is what I want I will also have to have radiotherapy. So I have a lot to think about hence don’t know what to do for my own sanity !!
Thanks Jane
Great news that is not spread. As being a person with secondary cancer I would think a double mastectomy is the safe option and I wish I had the chance for myself. But obviously this is not a rational or evidence based suggestion. Any genetic/ family history? Speak with your surgeon and also with your oncologist.
Best of luck and keep fighting
Valia
x
I’m so sorry to hear you have this new worry!
What does the consultant suggest?
Hi
Thank you for your replies. There is no family history of breast cancer I go back to see my consultant on Tuesday and I want to speak to my oncologist as well. When I spoke to my consultant last week he said there was no need for me to have a double mastectomy he would just remove the tumour and I would then need to have rads as I only had chemo first time round But that is my worry what if it comes back again? Dont know if i can liive with the constant worry about every little lump in my boobs being cancer again. Trying to stay positive!
So sorry to to read what has happened to you.
I too have had breast reconstruction but I had the LD Flap not the Diep.
I have to admit I was so shocked to read about it being possible to develop a cancerous lump in your reconstructed breast. I stupidly presumed it wasn’t possible since the annual mammogram doesn’t include the reconstructed breast and my consultant has never mentioned or appeared to check for that, no doubt he does though.
Hope you don’t mind me asking but did the surgeon use an implant in your reconstruction? If so and i realise it will be the least of your concerns but please double check about the effects of radiotherapy if that is the road you go down, I’m sure you’ll already be aware that it can cause the implant to distort etc. and you may require further surgery to have it replaced.
I wish you all the best and hope your consultant and oncologist can help you reach a decision that you will be happy and comfortable with.
Hi thanks for your message.
Yes I was shocked as well and even my consultant couldn’t believe it as he said it was very rare for the cancer to come back in the breast as there is no breast tissue and I’m guessing that as I have not had any replies by anybody that this has happened to then its not a common thing. I didn’t have an implant I decided against it thinking that using my own body tissue would be safer how wrong was that !
Hi Jane,
So sorry to hear what you are going through. I’m not in a similar situation to you but thought I would chip in anyway lol. I think at the end of the day the decision is yours and it wholly depends on what individual situation you are in. If it was me personally I dont think I would like to live with the worry of the risk of it coming back knowing what you would possibly have to go through treatment wise eg chemo, radio, etc. So i think I would also consider a double mastectomy. But thats just my personality type - a bit of a worrier!
I had a mastectomy back in january, and I am considering getting a double mastectomy when I get my reconstruction next year to eliminate the risk as much as possible of ever having to go through all this again.
I hope someone on these boards can help you further.
Wish you all the luck in your treatment xx
Hi Cocobutterfly
Thanks for your message…hopefully by this time tomorrow I will have made a decision !
Take care
Jane x
Jane my friend Dot had a recurrence in her reconstructed breast a year after her inital Bc in 2008 and a year later had a small cancerous area which they put down to cells being left in the biopsy tract… She originally had an mx and LD recon and then a year later had WLE and rads and has had a few tweaks heare and there since then… Ill drop her a message and she might be abke to come on and share her experiences.
take care
Lulu xx
Hi Lulu
Thank you so much.
Jane x
Hi Jane
Just as Lulu said I had a recurrence in my MX and recon breast in 2009 a year after my original diagnosis. They offered no explanations at the time so obviously I was worried! I had a lumpectomy and 5 weeks of rads. the rads were over 5 weeks instead of the more usual 3 to reduce any damage to the implant. I was never aware of any change to my breast. I have just had the implant changed but that was because I was never happy with its position. A bit too close to my chin LOL!
I had to change surgeons a couple of years ago and I asked my new surgeon and he looked into it for me, discussing my case with the pathologist and they came to the conclusion that the new lump probably originated from some cells left behind in the biopsy tract. This made me feel safer, in that I hadn’t sprouted a brand new tumour. I now refer to it as “left-overs” rather than recurrence, makes me feel better!
The big problem as I see it, is the lack of imaging done on a reconstructed breast. When in reality mammos CAN be done ( I now have both breasts done annually) or ultrasound or MRI (which I also have annually)
Would you feel safer if your recon could have mammos or be scanned? I have been fine ever since and am happy with my follow-up.
Good luck with the decision
Love n hugs
Dot
xxx
I’m not in your situation but I am aware that cancer can “come back” after a mastectomy, whether you are reconstructed or not. As in Dot’s case, I think the explanation lies in a few left over cells on the chest wall or periphery of what they took away, that just decide to kick off again and start a new tumour. Little b***ers!
If it happens to be hidden behind a reconstructed breast that is not having a regular imaging, I imagine it is likely to get quite big before it is noticed!
Scary thought! 
Hi Dot
Thank you so much…your advice has really helped. I have just got back from seeing my oncologist and he is going to put me on lapatanic & capectabine (currently on tamoxifen & 3 monthly zoladex injections) and i will also need rads I also asked him his opinion re having a double mastectomy and he said the same as my consultant basically if its going to come back it can just as easily come back in the chest wall or anywhere else for that matter (i know i can rely on him being brutally honest) but I will now have to have more regular scans etc which to be honest I would rather they kept a closer eye on me ! Can I just ask how you found out about your recurrence as I assume you didn’t find a lump like me?
Just off to see my consultant/surgeon to let him know my decision.
Take care
Jane xx
I am another unlucky one, I had mastectomy with immediate LD reconstruction in 2005, had a recurrence in 2009 and another a year later, both were dealt with by surgery. The following year I was diagnosed on other side, according to scan it hadn’t spread elsewhere although I was told that a CT scan will not pick up anything smaller than 1cm.
I have been told that if I have further surgery it will only come back somewhere else, (don’t know how they can be so sure) so at present the plan is to control things and have been doing this for 2 years.
Just to add I had my first diagnoses in 1985 so had 20 years with no problems, I don’t count that now as it was so long ago.
Best wishes
Jan
Hi jane,
Mine was found by MRI. My original BC was 3 small tumours but only 2 were seen on ultrasound and mammos so I asked for MRI…thank heavens! They recalled me saying they thought it was just a vessel but when they did an ultrasound the atmosphere in the room suddenly changed when they realised it wasn’t a vessel!
hi all i had bad news today i have only just finished treatment and within weeks have a new cancer .i now have to have mastectomy nxt week i am not having anything done after as dont want more surgery i no its not same as yours but cudent find a post that had cancer come back so soon xx
Oh so sorry to hear your news, my heart goes out to you. We were both on the June forum I seem to remember. Good luck with your op next week, hope it goes well. Don’t blame you for not wanting anything else done, you have been through enough this past year. Best wishes for a speedy recovery. XX