Need some advice

bexybexy
bexybexy Member Posts: 151
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi there

I had DCIS last year and underwent a mastectomy on my right breast and DIEP reconstruction. All going ok. Am due to see my mastectomy surgeon tonight just as a routine check-up and also so we can start arranging monitering of my left breast. His plan is for me to go either yearly or six monthly for an ultrasound, as due to my age 35 he says that is more advisable than mammo.

He is a great man but very blase I know he doesn't mean to be he just has a very relaxed manner which sometimes stresses me out lol! He keeps saying with regards to the reconstructed breast "that's fine now no need to worry about that" by I know that crazy as it may sound to others there is still a realistic chance of recurrence there. I know the odds are not high but there are still odds. So I am going to say to him that I want both breasts monitored but am just worried he will say there is no need. Even my mum seemed incredulous when I mentioned about monitoring this breast and just looked at it and said "but you've had a mastectomy!"

Advice needed please as I feel it is not appropriate to just "forget" about this breast it is still a breast in my mind and stray cells could still have escaped and gone to the chest wall so am I alone in thinking it still needs caution? Thankyou!

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Comments

  • ma111
    ma111 Member Posts: 1,376
    edited April 2012

    The chest wall is different then the breast and not picked up on mammogram. Chest wall would be considered mets. Stray cells could have escaped, however that's why they sometimes do chemo first unless you were early stage, then there would not have been any cells to escape. Chemo can also get the cells that went astray. If you had radiation to your chest wall before the DIEP, that would also have helped.

    I hope this makes sense and puts your mind at ease.

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  • bexybexy
    bexybexy Member Posts: 151
    edited April 2012

    I know mine was definately considered early stage as chemo and radiation was never discussed. However I think I would still like the ultrasound done to put my mind and rest. Even with my reconstruction I am obsessed with checking the new breast and it still feels very lumpy (understandable after the surgery) but any lumps put so much worry in my mind even hate the word lump lol as that is how I found my DCIS. xxxx

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  • ma111
    ma111 Member Posts: 1,376
    edited April 2012

    In the case of no radiation or chemo and considering your age I think checking the chest wall would be a good idea.

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  • bexybexy
    bexybexy Member Posts: 151
    edited April 2012

    yeah that is what I thought but sounds like I am really dumb here what area do they mean when they say chest wall? Also how will I know the difference between lumps that could be recurrence and scar tissue? xxx

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  • ma111
    ma111 Member Posts: 1,376
    edited April 2012

    Chest wall is the tissue on the ribs and the ribs. Lumps would be what is new from this point forward.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited April 2012

    Since I joined two different breast cancer forums since 2010, I have seen maybe 2-3 people post that had DCIS and got it back later. Two were on reconstructed mastecomy breasts. I think it is rare, but I don't know statisitics. I do know if it were me, I would want both breasts monitored. Granted it may be rare to get DCIS back in a reconstructed breast, but how do we know what side of the fence we are on? All the statistics in the world can't predict the future.

    I had a BMX with no reconstruction and although I know realistically, I will probably not get breast cancer back, I do think in the back of mind what my breast surgeon said about it only takes one cancer cell left...

    I don't freak out or dwell on it, but it is always tucked away in a little memory spot in my brain.

    Let us know how you are doing and what happens.

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  • bexybexy
    bexybexy Member Posts: 151
    edited April 2012

    ma111 sorry if I sound really really dumb here I still don't really get where my chest wall would be and google images brings back really in depth pics my brain is confused lol! Sorry - so we are not talking about on the actual reconstructed breast? Where would I touch to know I am in the right area for my chest wall as you say the ribs but which kind of bit? Sorry you must think I am awful!!

    cinammonsmiles I so agree with you I will never leave anything to chance and will still be checking. As mammo is out of the question for the recon breast might see about getting MRI for both as that would also make sense with regards to my age. Thankyou for understanding think others just think I am being paranoid and worrying for nothing but it is worrying that saves lives!!

    xxxxx

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  • ma111
    ma111 Member Posts: 1,376
    edited April 2012

    bexybexy,

    The chest wall is very confusing, do not think you are stupid. It's not an area that you can really feal unless you are really small boobed. You can feel your ribs on your side, but once the breast tissue starts, you can no longer feel you chest wall.

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  • bexybexy
    bexybexy Member Posts: 151
    edited April 2012

    Oh I see, thankyou . So how would I know if anything had come back as the recurrence is supposed to be on the chest wall. I guess the only way it would be seen would be MRI right? Makes it so confusing doesn't it as I was going to carry on checking my reconstructed breast for any new lumps. My surgeon keeps saying it is so unlikely to come back etc and everyone else but I don't feel happy at all just "forgetting" about it. xxx

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  • bexybexy
    bexybexy Member Posts: 151
    edited April 2012

    Aaaargh can anyone PLEASE help with this lol am kinda stressing myself out about the whole subject of how will I know if I get a recurrence in my reconstructed breast until it's too late!!!!

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  • ma111
    ma111 Member Posts: 1,376
    edited April 2012

    Bexy,

    Your reconstructed breast is not breast tissue to get breast cancer. It is the chest wall to be concerned about.

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  • Anne888
    Anne888 Member Posts: 58
    edited April 2012

    Bexy, the only way you could "feel" a recurrence on your chest wall would be if you'd had a mastectomy with no reconstruction. But I'd think that it could be checked through an MRI or some other sort of imaging.  Definitely something to discuss with your doctor.  By the way, your new "breast" is made up of abdominal tissue so any lumps you feel are not breast cancer, because it's not breast tissue.   So that's one thing that you can put your mind at ease about.

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  • Beesie
    Beesie Member Posts: 12,240
    edited April 2012

    My understanding is that a 'chest wall' recurrence is considered a 'local' recurrence for those who've had a mastectomy. A chest wall recurrence can happen if there are any cancer cells in the few scrapings of breast tissue that inevitability are left behind after a mastectomy.  A chest wall recurrence is not mets, although as with any recurrence, it can develop into mets if the cancer is invasive.  Approx. 50% of DCIS recurrences are found while they are still DCIS; the remaining 50% are not found until they have evolved to become invasive. Very few ever develop into mets, as supported by the fact that the overall survival rate for those diagnosed with DCIS is in the range of 98% - 99%.

    Anne, as you said, a chest wall recurrence can be felt by those who don't have reconstruction. However as my breast surgeon explained it, a chest wall recurrence would also be noticable to those who have implant reconstruction because the implant is placed behind the muscle and as a result, the muscle and chest wall are therefore pushed forward so that they are right below the skin.  Therefore a nodule on the chest wall can be felt right under the skin, on top of the implant.

    Bexy, I haven't commented on your post before this time because I don't know what the proper monitoring should be for someone who's had DIEP reconstruction. I would think that an MRI might be appropriate but I don't know whether this is regularly done for women who've had DIEPs or TRAMs.  It's certainly worth discussing with your doctor.

    Some info about chest wall recurrences: 

    http://www.mayoclinic.com/health/recurrent-breast-cancer/DS01078/DSECTION=symptoms  Signs and symptoms of local recurrence on the chest wall after a mastectomy may include:

    • One or more painless nodules on or under the skin of your chest wall
    • A new area of thickening along or near the mastectomy scar
    .

    http://ww5.komen.org/BreastCancer/SurvivalandRiskofHavingCancerReturnAfterTreatment.html   Local recurrence is the return of cancer to the breast, chest wall or lymph nodes after treatment. Most local recurrences occur within the first five years after diagnosis.

    . 

    http://www.health.com/health/condition-article/0,,20190401,00.html   Cancer that recurs in the same breast or in your mastectomy scar is called a local recurrence. With local recurrence, you may have symptoms such as:

    • A lump or thickening in the breast, chest wall, or armpit after you have had breast-conserving surgery or a mastectomy. You may notice that the skin of your chest looks or feels different.
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  • bexybexy
    bexybexy Member Posts: 151
    edited April 2012

    Thankyou so much everyone

    I am going to try not to get too hung up on things and my mum pointed out to me that I am only 3 months out of major surgery so lumps, bumps, thick skin etc are all to be expected. The surgeon did say abot MRI which sounds like the way forward and I could have it done for the unaffected breast and the reconstructed breast. I am due to see him soon and even if he tries to move me away from having the recon breast checked I will push on as it's my body/peace of mind at stake. It is comforting to know if it was a recurrence it won't be mets but still don't want any type of recurrence if I can help it. Just really upset and bothered me that I was expected to just forget about my recon breast and have no way of knowing if anything had come back to the chest wall - that felt like playing russian roulette and I didn't want that, the reason I had the DIEP was because I wanted to take control of the situation and this felt like I was just surrendering to whatever may happen!

    Thankyou so much people you have definately helped to ease my mind a great deal am really helpful and feel like I have got more clarification with you all than sadly with my surgeon.

    xxxxxx

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  • netty46
    netty46 Member Posts: 296
    edited January 2013

    I got cancer in reconstructed breast. 7 years after i had diep flap.

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