double mastectomy and recon following cancer in both breasts

Hi,
I had cancer in left breast age 31 and now again in right breast age 39… with head and neck cancer age 33. I have just been told im brca1 positive… and apart from being advised to have oophorectomy as increased risk of ovarian cancer, im wondering about having a double mastectomy and recon. I just want rid of them… how soon after radiotherapy can they operate?

Any advice? Am seeing surgeon on Thursday…

many thanks

Wendy

Hi Wendy,

You’ve been through the mill a bit!!

I was diagnosed last year age 26 and because of family history have been advised to have both breasts removed and oophrectomy. I had to have left mast due to size of mass followed by chemo and rads which all finished April this year.

I saw plastic surgeon in May and I am having right mast with immediate recon next Tuesday (21st, pre op tomoz), followed by left recon (infected side) April/May next year. He advised me to wait 12 months following rads before going for the recon, although I have heard some only say 6 months - luck of the draw. When I see my plastic surgeon next Tuesday before the op I shall mention to him that i dont mind if he wants to do the left at the same time, if he’s got a couple of hours spare since im already under anaesthetic. Dont like my chances but worth ago :wink:

Your surgeon might suggest you have it done in two stages as otherwise its a massive op. I was given the choice to do it as above or to have another mastectomy and then have bilateral recon at the same time, that way they can get them level easier but I couldnt cope mentally with that, am doing “ok” with just one but having none whatsoever and have been a D cup for years dont think so.

Good luck with your surgeon.

Let us know how you get on.

Ju -x-

Hi Ju and D

Many thanks for you kind replies… not much info from consultant, as the Birmingham hospital rang and told my my BRCA1 result last friday… and he knows nothing about it - different hospital … i tried to explain my worries… but as usual… faced with a consultant and armed with my list of questions… i still was a gibbering wreck… he did say he would talk to oncologist today and let me know what they think… someone should ring me tomorrow…

I think im angry that if i had known what i know now… i would have had mast and recon years ago… but perhpas i just blocked it out the 1st time round!

Ju - i like your style in asking for it all to be done together… i hope pre op went ok today… what hospital will you be in? Good luck and fingers crossed. Can I ask what family history… only the 1st time at 31… i knew my nan had died of bc at 50 and my cousin age 40 - all on same side was diagnosed a month after me… and no one mentioned the possibility of preventative treatemtent… or at least i dont remember…

Wendy xx

Hi Wendy,

Have you had a phone call yet?

Pre-op was fine, even managed to have a “grope” of an implant just so I know what exactly Im having, Im one of those people who prefer to be as informed as poss - perks of working for the NHS! Im having the op at the City General Hospital, Stoke. Its a bit of a mish-mosh site, with buildings, old and new, here there and everywhere and they are doing loads of building work but it was alright. The staff were all friendly which is the main thing. My friend is there at the mo - she’s just had her mast site reconstructed and she’s doing really well.

Family history - my mum has had breast cancer twice (in the same breast) and ovarian cancer hence all the preventative measures Im taking. What with all that, my age and being tripe neg it doesnt bode well for me not having cancer again in the future so just doing as much as I can but then if your gonna get it, your gonna get it. Ive been pretty positive throughout it all, but not sure how I would feel if i was faced with it again - my hat goes off you to :wink:

I hope you get the answers you are looking for.

Good luck, Ju -x-

Hi Ju,

No phone call as yet!! I’m glad your pre op was ok… and oh the benefits of working for nhs…! A quick grope… ive managed to get a side room but no grope… i must complain!! Stoke is not that far… i used to work in Hanley - in the dim and distant past!! I’m glad your friend is doing ok…!

I get the idea my surgeon thinks im bolting the stable door after the horse has bolted with regard to thinking about double mast ect… but i’m of the mind the horse might have bolted but id rather avoid the stampede!! Am I mad? I’m triple negative with two primary medullary cancers both grade 3… so feel like a time bomb… I’m glad you have the opportunity for all the preventative measures… and your were very young… dont you just get fed up with that… im sick of’but your very young’ or extremely unlucky… lightening doesnt strike twice’ … well bugger that… its struck 3 times so no wonder i want to get rid of anything i can… !!

Who advised your treatment… the oncologist or the geneticist…the surgeon looked at me as thought im mad!! But then ive worked with him… bless him… it must be a nightmare… i keep coming back through the door…!!

Do you think im mad… ?
And im sure you will face anything thrown at you… you have your tears - your really angry times… then head goes up shoulders go back… and away we go… !

Wendy x

Hi Wendy
You’re definitely not mad!

I had invasive lobular cancer, grade 3 and a right mastectomy last December. I have since been told by the oncologist that there is a higher risk of this cancer returning. I have decided that I don’t want to wait for it to come back again so i’m having an elective left mastectomy in October and a bilateral reconstruction done at the same time. (It took me about 4 months to come to this dicision, 4 months of me thinking I was going mad.) My consultant (Birmingham hospital) has been supportive and agreed to do it, though I did have to see a psychologist first in order to talk through my decision. I have no family history of breast cancer, but this is definitely the right decision for me.
It took me a long time to come to this decision, my husband was against it, and my parents thought it was abit drastic but now they all agree that its my peace of mind that matters most.
Good luck with your decision, I know how hard it is to make, give yourself time and the right decision will become clear in the end.

Sandief
x

Dear Sanief

If i have mine done it will be at birmingham, it so nice to hear from someone who has had it/having it done… my husband agrees with mastectomy but isnt keen on reconstruction… if im going down that road then they are being reconsructed… its the only thing that makes me feel girlie… and im only 39

having had a long chat to one of the helpline nurses and she was really helpful… however i get the idea im on limited time… but could be wrong… !

Thank you for sharing your details with me… if you dont mind me asking… where are you and how old are you? both my tumours grade 3… but no one ever mentioned mastectomy…but then so much of it is a blur…
wendy
x

Hi Wendy

Its so nice to hear from someone going through a similar experience to me.

I’m 49 and live in Worcestershire. I initially went to Kidderminster Hospital but because I wanted recons I was referred to City Hospital.

To me, having the recon surgery is like putting an end to the whole nasty episode. And from what I’ve read on these pages I should look better than I did before…(I have always been 38E, so I’m looking forward to being a B/C cup) So many ladies have said how happy they are with their new boobs.

Why do you feel like you are on limited time?.. When do you see the oncologist again?

I could have had just a lumpectomy but as the cancer was invasive the onc seemed to be steering me towards a mastectomy, saying that I might need a mastectomy in the end anyway.

I’m just looking forward to it all being over, though I feel much more positive now I know I’ve made the right decision.

Sandie
x

Hi Sandie

How weird I live near Malvern and went to Redditch for 1st op with rads at cov and warwick, for 2nd cancer it was Cheltenaham and Bristol, and now ive been to redditch and cheltenahm for last one!

Ive have rather more than a handful so if i go down that line and im sure i will i might have a bit less…!

The limited time thing. … with family history and my 3 primary cancers - 2 grade 3 and oral cancer with mets… on paper it doesnt look good… and adding triple negative in my case doesnt help… but those are stats… ive always had since i was little a thing that i wouldnt live till old age…

The breast care nurse has just rung and the onc and surgeon decided to refer me back to geneticist to get whole outlook for me…then see onc and go from there, i have an appt with onc in september so hopefully will have seen g’tist before then…!

However, i am camping next week… so it depends if i survive that!!

What do you mean by invasive cancer and the high risk of it returning? Which onc and surgeon do you see… worceser or redditch?

Wendy

x

Hi Wendy

Good luck with the camping next week, I hope the weather improves for you!!!

The onc and plastic surgeon I see are both in Birmingham. The onc said that with the type of cancer I’d had there is a much higher % chance of it returning than if I’d had DCIS. I know the Arimidex will help but I was miss-diagnosed the first time, after tests and mamogram they said the lump was just thickening of the breast tissue. I already have some pain and a lump (though very small) in the other breast, could be imagining it but have a fear of them miss-diagnosing it again. You could say i’m being pro-active!!!

No wonder you feel as you do after all you’ve been through. I really admire your bravery.

Sandie
x

Hi Sandie,

Pro active is good… best be happy in your own mind - then you know you have done everything you can … thanks of talking sandie, right im off to pack my tent…! Help… but weather is suppposed to be ok

catch you soon

wendy …