Diffuse skin thickening??

AnacortesGirl
AnacortesGirl Member Posts: 1,758
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Diffuse skin thickening??
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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2009

    A few days ago I finally pulled out my MRI & PET scan results from Aug & Nov and read through them in detail.  The one in Aug was prior to my taxol/sutent chemo and the Nov scans were the comparisons for the study after I completed that regimen.  Now I"m four weeks into AC.  I'll get re-scanned at the end of this regimen in March.

    The Nov results look pretty good.  The 3 axillary level 1 lymph nodes measuring cm's are no longer showing on the scan and the uptake seen in level 2 & 3 isn't showing up.  The tumors were confluent and now they've shrunk enough to be seen individually. 

    But both sets mention the diffues skin thickening.  In the initial clinical dx I had redness and thickened skin.  The redness faded to pink and the breast thickening has really reduced when I check myself.  But I just don't know what this means on the reports.  My onc got a little vague when I asked him and I didn't pursue.  Anyone else with ILC who's seen this and can shed some light?

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  • Gitane
    Gitane Member Posts: 1,885
    edited December 2009

    It is so encouraging to hear that you are having such an excellent response to treatment.  It sounds like the taxol/sutent really is working well for you.  I wish I knew more about your skin question, but I don't.  Hopefully others will know more.  All the very best as your treatment continues.  Let us know how you are doing.  Take very good care of yourself.  Giant hugs!!!  G.

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  • RunswithScissors
    RunswithScissors Member Posts: 323
    edited December 2009

    I wasn't dx with ILC - I have IDC, but I did have the same diffuse skin thickening on MRI, visible redness on my breast, and some thickening changes to aerola that I could see myself. 

    One doc thought it might be IBC, but the surgeon disagreed.  He attributed the whole thing to inflammation from the biopsy.  (It did come on right after that). 

    It mostly went away through chemo. 

    But now I am getting rads and I notice the lower aerola is looking light in color and thick again.   I wish I had insisted on a skin biopsy early on.   I don't think they can do a biopsy until the skins heal after the rads. ??   I'm going to mention it to the rad onc tomorrow. I'll let you know what she says.  

     

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2009

    Amazing. You just described my symptoms except it was there the day I went to the surgeon for the biopsy consult.  She did the biopsy the next day.

    I may be reading too much into this but I'm thinking that my onc doesn't want to address it until the chemo is done and it's had a chance to do it's work.  Then get a punch biopsy before surgery.

    I will be interested in what you rad onc has to say.

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  • RunswithScissors
    RunswithScissors Member Posts: 323
    edited December 2009

    Doc thinks this could be edema of the skin.

    I'm thinking that if does not clear up in a short time, I will ask for that skin biopsy that they should have given me as soon as IBC was suspected. Otherwise, I'll never have peace of mind.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2009

    Was your chemo before or after the surgery?

    I'm agreeing with you about needing to have the skin biopsy for piece of mind.  I found the following on the Mayo website when I checked edema:

    Inadequate lymphatic system. Your body's lymphatic system helps clear excess fluid from tissues. If this system is damaged - either due to lymphedema that occurs on its own (primary lymphedema) or because of a disease or medical condition, such as cancer or an infection (secondary lymphedema) - the lymph nodes and lymph vessels draining an area may not work correctly and edema results.

    I'm sure I had issues with my lymph nodes ability to drain through the nodes under my arm due to the size of the lumps but now that those are gone then why is still have the pink and the diffue skin thickening still shows up on the MRI?

    I hate to think I have to wait 3 more months (that when chemo will done) before I can get a definitive answer. 

    Thanks for letting me know what you found out.  If you get any more info I sure would appreciate it.

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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited January 2010

    It was skin thickening and changes to my nipple that alerted me to the cancer. The colour of the lower aerola seemed white and the nipple wouldn't become fully erect. It took me days to find a soft lump / thickening and my Dr didn't think it felt like cancer. I felt sure I had a swollen breast and in the month I waited for the diagnosis and surgery this became obvious. The mammo and us showed nothing.  The BS took a punch biopsy of the skin beneath the nipple as well as a core biopsy of the lump.  The skin punch was negative but the core biopsy showed ILC. I was sent for a CT which showed oedema but not cancer.  I asked for an MRI which is not covered by the Australian health system so it cost me Aus$300 and showed the tumour which turned out to be 4cm with 9 nodes when I had surgery. The MRI showed diffuse skin thickening which I see from this thread was due to the oedema caused by the blocked nodes.

    Christy, I had surgery before other treatments so I can't answer your question about why the thickening is still there, but I hope it's just a matter of time for it to settle down. At least by getting the chemo first you were able to see whether the tumour responded to the choice of chemo, whereas surgery first means there is no way of knowing if the chemo chosen had any effect at all. 

    Best wishes for your future.

    RunsWithScissors, I had truncal oedema towards the end of the rads but by then I'd had a bilateral mantectomy so the remaining skin was burnt but not swollen.

    Thank goodness the treatment phase is over apart from the arimidex.  Now I only have SE's such as arthritis and osteoporosis to deal with and I'm hoping they will be mild. And of course the fear of recurrence which hopefully will fade as other issues take up my energy. It doesn't help much to hear at the time but it really does get better as the treatment phase nears an end and you can breathe again.  I just need my hair to GROW so I don't look like a cancer patient, but that's a minor issue compared to the discovery, diagnosis and treatment phases.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited January 2010

    Sheila -

    Thanks for finding this thread and posting a response.  What you wrote make me feel better since you had the same issue and the skin punch was negative.  I'm still seeing the redness so the edema is still there.  But it's no worse.  So after reading your comments I'm wondering if there is some damage to my axillary lymph system which prevents good drainage.

    Your description of the lightening around the areola and that the nipple doesn't become fully erect is a match with my situation.  Just 8 more weeks of chemo....

    Thanks!

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