Secondary breast cancer after mastecomy

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Hi there,

 

I’m looking for some help and information. 

 

My name is Justine, in October 2012 when I was 20 and my wee brother was 16, we lost our mum to breast cancer. 

 

My mum had originally been diagnosed when I was 16, she was given a mastectomy and reconstruction surgery and after that had her yearly mammograms. When I was 19, in June 2011, I returned from a holiday with friends and my mum told me and my brother that her cancer had came back. The cancer originally returned in her breast she had initially had the mastecomy in, by the time they found it in her other breast by mammogram, it had already spread and was showing lesions in her liver. The tumour had returned behind the implant from the reconstruction.

 

My mum had 12 sessions of chemo in 12 months, she always seemed to respond to the chemo, but never the tablets she was given after. Eventually her body couldn’t take anymore and she passed away just over 1 year later.

 

The reason I’m looking for some help is I don’t want my mum to have died in vain. She was an amazing woman (I know everyone says that about their mum, but she truly was) and the pain of missing her will never leave me. The one thing that has been spoken about on several occassions within the family is the fact that her reconstructed side was never checked, it was something that was never discussed, that it could come back on the same side, and unfortunately in my mum’s case, go undetected until it was too late.

 

I now make sure whenever anyone shares their story with me and they tell me they are having reconstructive surgery, that they request an ultrasound or a some form of scan to check the reconstructed side also.

 

I am aware that this is probably a rare occurrence, however I don’t believe my mum is the only person this happened to. On this basis I want to try and change this, I want to try and find a way to make it mandatory that even after reconstructive surgery both breasts are fully checked. I just wonder if this was the case how many women, daughter’s, sister’s, mother’s would live longer? I desperately miss my mum and want to do something in her name besides the usual fundraising - I want to make a change in her memory.

 

In order for me to even begin to know where to start, I’m wondering if anyone who has been affected, or knows someone who has can help me? Can you share your stories with me if you have been or know someone who has been in the same situation my mum was in? Or even if you have any tips to help me it would be greatly appreciated!

 

As I’ve said (several times) I want to do something special in my mum’s memory and try and make a change for women living with breast cancer and their families.

 

Thank you in advance to anyone who can help me, anything at all would honestly be so appreciated. 

 

xxx

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Hi Justine

 

I’d rather send you a private message but that option isn’t available from the link on your name. Perhaps you could try clicking on my name and send me a private message and then I may be able to reply directly to you.

 

In the meantime, I think it’s a wonderful thing you’re doing in your mum’s memory and I’m sure she would be immensely proud of you.

X

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What a lovely posting and yes you are so correct to pursue this as personally I think too much attention is put on the  primary dx and then after 5 years you are  discharged and left to your own knowledge and unless you have the medical knowledge that many of us dont …aches and pains are often  put down to arthritus, pulled muscles etc and overlooked until they get so bad - its often too late to treat. I think a lot of the ladies on this board will support you as we all have stories to tell.   

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i have often thought about this too that i get yearly mammograms but the reconstructed side is never checked . i also think they should do a yearly scan on that side for precautionary measures. xx

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HI

i have secondary breast cancer and mine also grew from behind my silicone implant i had in 1995 after mastectomy  i had a mammogram on the implanted side nothing picked up i then had ultrasound scan a few years later nothing picked up 3 months later i had a large lump appear on sternum which turned out to be a secondary cancer. they said i was just unlucky which i do not believe at all i think there will be if not now quite a few develop it behind implants.

i often think about it and either the ultra sound can not see behind the implants or as protocol says they can only scan were the Dr. says to do it and they do not go further than that as in my case they ultra sounded the upper right quadrant on me and the tumour had grown from the lower left just were the breast ends so i was at that time discharged as nothing showing till it appeared 3 months later, also as when they send of the samples they do a margin of about 2.5cm away from tumour and if that is clear that is it but another could be forming just out side the margin that at that time no human eye could see or even a ct. as i was first diagnosed in 1995 they never ever checked behind my implant till about 2005 and at that time they did the mammogram on it i thought they had done wrong breast and made a mistake in 2009 i asked the mobile unit to do a mammogram on my implanted side and they said it was a controversial subject so would not do one hence i went to GP and they sent me for the ultrasound that did not pick it up.

Hope this has thrown some light on things to help you with your loss or to help other people as i tell people not to have reconstruction, but then am i right who knows

Kay (pussy)