Is surgery required with IBC diagnose

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Cheryl1234
Cheryl1234 Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)

I was diagnosed with IBC in July 2011.  I have finished chemo and now am faced with masectomy possibly a double.  Some moments I an collect with my thoughts and then other times I am freaking out and want to flee.  I also wish I could just get the herceptin and gorget surgery.  Any one else been here?

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2012

    Cheryl,

    I was diagnosed 6/09.  Chemo is first treatment for IBC.   Usually chemo, surgery & radiation is required.  I did not do radiation, but was stage IV from the start.  My onc did not allow surgery until I was stable, then he highly recommended it.  I did BMX and finally had clear skin afterwards.  My surgical pathology report showed microscopic cancer cells that were too small to show up on scans so I'm glad I did the surgery.

    Terri

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2012

    Cheryl, the information at the main Breastcancer.org site explains the usual treatment for IBC, as ibcmets and Bon have said. You can read more about what to expect in the Treating Inflammatory Breast Cancer section.

    Best wishes.

    .

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  • Cheryl1234
    Cheryl1234 Member Posts: 5
    edited February 2012

    I really appreciate you sharing with me.  I have had chemo, one that shrank and killed and then one that blocked.  I lost my hair on the first round of chemo and my toenails on the second round.  My surgeon did that genic testing although my ONC says it is gentic since two sisters have had breast cancer and a brother who died from colon cancer.  I am waiting for the genetic test results.  My last round of chemo ended Jan 7.  I think I have too much time an my hand and want to procastinate from the surgery.  I did find a posting from back in 2009 where someone else thought of foregoing the surgery. That was helpful reading all the relpies from her initial post.  I see the surgeon again in a couple weeks and I have a consult with a PS.  My gut feeling is the surgeon and ONC don't want me to have reconstruction.  

    Being told I cancer was no big shock because of my sisters.  Getting through the chemo was rough but it got done.  Now there seem to be questions and dilemnas.  Reading past blogs and the hope of chatting with someone will/should help me navigator through this.  Thank You for sharing.

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  • Kicks
    Kicks Member Posts: 4,131
    edited February 2012

    I never gave it a 2nd thought. I was DX'd in Aug, '09. I did A/C (4 that were 2 weeks apart) to shrink and get margins, had a Mod. Rad. Mast. 2 weeks after last. A/C. Good results. 3 weeks after surgery did 12 weekly Taxol. 1 week after last Taxol started 25 rads. A week after starting rads, I started Femara.



    I was flat out told by all my Drs (my PA of 16 yrs also) that with Inflammatory Breast Cancer reconstruction is not an option for at least a year.

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited February 2012

    Mastectomy is standard treatment for IBC, with the high recurrence to the other side I opted for the bilateral mastectomies, that was 3.5 years ago with no recurrence.  I was told reconstruction would have to wait at least a year, by that time I didn't want recon.  But this last summer I changed my mind and had bi-lateral DIEP.  I don't regret the mx, no recon & now recon.  I would discuss it with your doctor. I know all the treatment is stressful but doable.  Hang in there. NJ

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited February 2012

    Chery1234,

    I was told surgery was standard for IBC due to the nature of the cancer. I had 12 weeks of chemo and jsut had my MX, with no reconstruction,  about 8 days ago.  I did not want reconstruction, but my MDs do not recommend it at the timeof MX, again due tot he nature of the cancer.  I know some hospitals are different.  Ina month I begin 4 x A/C and then radiation,then the remainder of the herceptin.  It is a long road, but I was told aggressive approach for an aggressive cancer.  So far all has been doable. 

    Gentle evening

    Nel

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  • germangal
    germangal Member Posts: 97
    edited February 2012

    MrsNJBand - I also opted for no recon at the time of my Bilateral MX - after years of bra-wearing (I was a G cup), being able to just pull on t-shirts was just refreshing!  However, 6 years later, I am finding I would like a little something to fill out the top ... when you researched your diep, were you told you would have to wear support in the form of bras from that point on, or can you still go without?  I know - silly question! but the idea of having straps on my shoulders and a band on top of radiated skin just doesn't sit well with me!

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  • anonymice
    anonymice Member Posts: 532
    edited March 2012

    I'm so sorry, IBC sucks.  Do not give a minute's thought to NOT having the surgery, though.  This is not the disease with which to .... mess around.  You can have reconstruction with beautiful results if that is the path you want...but save your life first.  Until reconstruction you can wear prosthetics that are beautiful and look natural, if being flat bothers you.  I do not normally wear prosthetics at all....but am having reconstruction this summer after some reflection.  I gained weight on chemo and am going to have a DIEP flap, which many ladies will tell you can give you a better figure than you had before, as they give you a tummy tuck (or, take fat from your hips and/or thighs).

    I do not *begin* to say "oh, a mx is no big deal"...it is a HUGE deal.  But since this is all so new to you, I just wanted to mention a few more positive sides because there are many, many options for looking and feeling the way you would like to do.  

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