reconstruction

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Jessica29
Jessica29 Member Posts: 36
edited June 2014 in IBC (Inflammatory Breast Cancer)

hello everyone,

I was dx with IBC in October 2005, I was 44 .

Here's a potted history!

I've been through the 'usual' round of treatment, chemo, surgery (delayed so caused problems), rads followed by tamoxifen.

I had a local recurrence 3 months after completing rads, was taken off tamoxifen put on Femera .

3 months later skin mets began to appear above and below my scar line so monthly zoladex implants were added into the mix. This combo worked for a few months but the mets began to progress so was sent to London Marsden for second opinion.

Am currently on LEAP trial (since April), capcetibine/lapatinib combo and am having a really good response!

My question is, bearing in mind how much IBC likes to attack the skin, what do you all feel about reconstruction? I have been assured my skin mets will disappear and know they will have to stay gone for a considerable time before I can seriously consider any recon surgery, but how safe is it for us?

Jessica29

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited October 2008

    Jessica:

    My opinion is that reconstruction is safe. I was dx with IBC in July of 04 when I finished chemo in December  04.  In January of 05 I had both my mastectomy and reconstruction done at the same time. Followed by another 3 1/2 months of chemo and 7 weeks of rads.  I have been NED for 3 years.

    Laura  

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  • suzyq18
    suzyq18 Member Posts: 33
    edited October 2008

    hi jessica, i to have ibc, had the usuall treatment fec chemo surgery, radiotherapy, i was told that because ibc has a high reccurent rate within the first 2 years, i would not be able to have reconstruction for at least 3 years, i think this is the norm with ibc i  dont know anybody who has had reccon at the time of surgery.at this  moment i am not interested in having reconstruction ,i am scared that the cancer may return and i would have to go through all  that surgery again.hope you are feeling better take care sue

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  • Jessica29
    Jessica29 Member Posts: 36
    edited October 2008

    Hi ladies,

    Thank you for your kind replies.Smile

    I wonder if there are differing opinions between UK/USA oncs regarding immediate recon?

    I too am in the UK and was told immediate recon was not recommended, although as I have explained, it was actually out of the question for me due to my skin mets. Certainly your 3 year rule fits my own oncs opinion Sue. I too know of none who have had immediate recon.

    Laura, I'm so pleased you were able to have this surgery successfully and that you continue to do well. So encouraging for the rest of us.

    Take Care,

    Jessica x

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  • suzyq18
    suzyq18 Member Posts: 33
    edited October 2008

    hi jessica nice to speak to some one in the uk i think the treatment is the same uk/ us, i have spoke to a lot of people on these message boards, and most have had to wait for recon, i wonder if u have finished all your treatment, at the moment i am clear of cancer keeping fingers crossed it stays that way. i am doing a five year cancer trial, looking at all the food that i eat, the trial looks at the food with estrogen in it, and wether it is harmfull to me the study is looking at 2,500 women in the uk, are you doing the trial, let me know sue

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  • Jessica29
    Jessica29 Member Posts: 36
    edited October 2008

    Hello again Sue,

    No I'm not doing the same trial as you, sounds interesting though.

    I am involved in research with a team assigned by Addenbrooks in Cambridge, looking at causes and treatment. I filled out the questionnaire and had to send off some bloods about a year ago, I think they wrote to all ladies dx with bc in West Essex to ask if they would be willing to take part in the research.

    Here's a potted history of me!

    Dx October 05, left breast.

    4 x FEC followed by 6 X Taxotere with herceptin, then rads and tamoxifen.

    Local recurrence Jan 06, WLE, stopped Tamoxifen started Femera.

    3 Months later began to develop skin mets along scar line monthly Zoladex added to Femera.

    Referred to Marsden for second opinion in Nov 07.

    April 08 offered LEAP trial  (Lapatinib/ Capecetibine combined) due to progression of skin mets.

    Am on 9th cycle and having good response, been back working full time since last summer. Onc has assured me the skin mets will go completely so I'm happy.

    Like you I'm unsure about recon, I certainly don't want to jeapordise anything or take any risks because I'm currently doing so well. I've just had my 3 year anniversary since dx and at the start wasn't sure I's see that day. Now I feel really strong and am determined to come out on the 'good' side of the statistics!! However there is a small part of me that says I'm only 47 and do I want to be stuffing my bra with a prothesis forever!! Not sure. Anyway for now the decision is on hold until the mets have hopefully gone for good.

    Good to talk to you too, do you use any of the uk based sites?

    Best Wishes

    Jessica x

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  • suzyq18
    suzyq18 Member Posts: 33
    edited October 2008

    hi jessica, glad that you are doing so well, i finished rads in june had my first 3 month check in sept all looking good. i am 46 but i dont want the reconstruction, not yet any way, im quite happy with the prosthesis, i have worn swimsuit with it and am managing well.hope your skin mets soon go away, you seem to have had a lot of treatment, i did 6 rounds of fec chemo, thought i was dying by the time i had the last 1, never mind all done and dusted now. lets hope some good comes out of these trials we are helping with. take care speak soon suex

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  • shenny
    shenny Member Posts: 1
    edited November 2008

    Hi.  I'm an IBC survivor for just about 6 years now.  I have recently been thinking about reconstruction for several reason.  1. I'm sick of my bra/boob riding up on me and making my breast look totally uneven.  2. I want to go into a reg store and buy a bra. 3. The prostetic boobs don't last very long and they don't hold there shape either.  BUT, I'm also scared to cut into that area.  I am thinking maybe I should leave well enough alone.  I also have no idea if it's even possible to do recon surgery because my scare is large and I'm kinda sunk in on that side.  I don't have any skin to stretch into a breast.  So, what would/could they do?  I'm going to talk to my oncolog at the end of Dec to see if it's even possible after 6 years, a big scare and no skin to stretch.  I'll let you know what she says.

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  • Jessica29
    Jessica29 Member Posts: 36
    edited November 2008

    I shenny,

    Your scar sounds a lot like mine!

    There are several different kinds of recon available now. Not sue whereabouts you are but I know here in England surgeons have their own particular favourite type of recon which is successful and they will have done many. If you want a particular type of recon it is possible to be referred to another area and surgeon but this can cause difficulties such as with aftercare or healing probs and needing to be seen quickly. Not insurmountable however!

    The diep is used a  lot for dealyed recon here as they take the skin from you tummy to create a new boob!

    You seem to have the same reservations as me though as to going ahead or leaving well alone.

    I will look forward to hearing what your surgeon says in Dec.

    Many thanks, and take care,

    Jessica x

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