Itchy breast (18 month post treatment)

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kritzy
kritzy Member Posts: 10
edited June 2014 in High Risk for Breast Cancer

I am about 18 months post radiation treatment for stage 1 breast cancer.  I had some pretty significant skin damage from the radiation and I am still a bit red and have some edema still.  However, recently (within the past 1-2 months) I have been experiencing quite a bit of itchy all over my breast and my nipple seems to have become inverted.  At one point there was a bit of a scab in the nipple like I secreted something that dried and fell off. 

My next oncology appointment is in June.  I'm wondering if this is something I should be concerned enough about to make an earlier appointment.

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  • NancyD
    NancyD Member Posts: 3,562
    edited March 2009

    How often have you been to see you rad onc for post treatment follow-ups? If you still have swelling and redness, there may be an underlying infection in some rad damaged tissue. I wouldn't wait until June to see someone, either rad onc or mec onc.

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  • kritzy
    kritzy Member Posts: 10
    edited March 2009

    I think I saw the rad onc in November and he said that he didn't need to see me again for a year.  The rad onc is much easier to get an appointment with.  The med onc is always booked for weeks and weeks.  I'll get an appointment with the rad onc.

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited March 2009

    I'd get an appointment asap. You don't want to fool around if you might have an infection or are having an allergic rection to a med or product you are using.  Are you using any kind of cream or lotion?  If so, your skin may be reacting to something in the cream/lotion.  The inverted nipple would concern me as nipple inversion can be a sign of cancer.  I don't want to overly alarm you but I noticed my nipple inverting. My gyn thought the inverted nipple wa not a problem, however, my mammogram showed cancer!

    Routine appointments may take a long time to schedule but tell the receptionist that you are having problems and need to be seen asap.  Some doctors now use email. If your doctor lists an email on his  card, I'd send him a note listing your concerns and I would also call his office.

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  • kritzy
    kritzy Member Posts: 10
    edited March 2009

    Thanks mawhinney.  I have an appointment with the radiation oncologist on Wednesday.  We will go from there.

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  • kritzy
    kritzy Member Posts: 10
    edited April 2009

    Hi all.  I just thought I would post the results of my appointment with the radiation oncologist.  Apparently, the edema I have had since my radiation has gotten much worse.  The rad onc said it sometimes gets much worse before it gets better.  Of course I had been searching the internet up until my appointment and had managed to work myself into a frenzy thinking it was a return of cancer - like IBC.  So, I made him tell me why he was certain it wasn't cancer again.  He said that I didn't have the symptoms that would cause "alarm" and, the said that they had radiated the wazoo out of my breast so there was a very low chance I had cancer again right now.  Finally, he said that everything just looked like the results of the edema.

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  • SandyL
    SandyL Member Posts: 49
    edited April 2009

    kritzy,

    I had radiation after having my second mastectomy and chemo.  Like you, I also had some pretty significant skin damage, only some of which healed completely.  About a year after rads, I started having some discomfort in the radiated area.  Also like you, I managed to work myself into a frenzy thinking it was mets or a recurrence.  I had talked myself into believing it was bone mets in my ribs when I saw my radiation oncologist, who said it was not abnormal to have continuing effects from the radiation even after a year or longer.  He recommended a bone scan just to be sure, but it was negative for mets and the pain eventually faded away.

    In your case, I wonder if your edema is actually lymphedema of your breast?  I have lymphedema in my left arm, hand, and fingers.  I'm not as familiar with lymphedema of the breast, but I know there are several women who have it who post on the lymphedema forum.  You may want to consider doing some research on it and post there as well.  Lymphedema is a nuisance, but it's better than a recurrence of your cancer.  Glad your rads onc was able to put your mind at ease.  Good luck!

    Sandy 

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  • kritzy
    kritzy Member Posts: 10
    edited April 2009

    Sandy,

    Thanks.  I was beginning to wonder if I was the only one out there with this lingering skin damage.  Its nice to know there are others.

     I talked to my rad onc about lymphedema about a year ago.  I was miserable with the swelling and tighness of my skin.  He assured me it wasn't lymphedema, the swelling was caused by fluid build-up in the damaged tissue, not the lymphatic system.  I only had 5 nodes removed and I wasn't having any swelling of my arm or hand.  However, because I was such a nag, he did refer me to a lymphedema specialist who showed me some massages I could to to push the fluid out of my breast tissue.  It helped some, but not as much as I was hoping. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2009

    Hi, Kritzy and all,

    Kritzy, I'm wondering about that explanation about lymphedema. When there's swelling in the lymphatic system it's not called lymphedema, it's called lymphangiectasia. Fortunately, that condition is rare. Lymphedema, on the other hand, is swelling of the tissues, not of the lymphatics -- exactly what he's saying you have.

    If the lymphedema specialist you saw didn't diagnose it as lymphedema, perhaps you might find another one and get a second opinion. In case you'd like to do that, here's a page with suggestions for finding a therapist who is fully trained in lymphedema therapy near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    The reason you want to get help with this soon is because lymphedema is staged, just like breast cancer is. If it isn't treated it progresses through the stages, resulting not only in further swelling, but in hardening of the tissue (fibrosis) that further blocks lymph flow. Left untreated, it also raises your risk of a serious, systemic infection because stagnant lymph fluid is an excellent breeding ground for bacteria.

    Breast lymphedema (called "truncal lymphedema") can be present without any arm or hand lymphedema. But it does indicate a compromised lymph system that can lead to arm lymphedema too. So when you see a lymphedema therapist do also ask to be fitted for a compression sleeve and glove to use prophylactically when traveling or exercising.

    Did your lymphedema therapist suggest compression for your breast? There are bras made specifically for this purpose, such as the Bellisse:
    http://www.bellisse.com
    Most women with breast lymphedema, though, are able to use regular bras or camis that provide extra coverage and support. Scroll down toward the bottom of this page for suggestions for breast compression that can help to relieve the swelling and discomfort:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    Itching, by the way, can indicate many things, but one of them is cellulitis, which can "smoulder" for awhile before becoming active. If you notice new redness, heat to the touch, or fever, do get help promptly.

    Sure hope you get some solid answers -- and some relief! -- real soon!

    Very gentle (((hugs))),
    Binney

     

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  • SandyL
    SandyL Member Posts: 49
    edited April 2009

    Binney, I'm so glad you posted and explained breast lymphedema so clearly and thoroughly.  Kritzy, I second Binney's recommendation to find a different lymphedema therapist and get another opinion.

    Binney, I'm also glad you mentioned the itching could possibly indicate cellulitis.  I wondered if that's what it could be, but was hesitant to say since I wasn't sure.  

    Kritzy, I think my radiation oncologist and the technicians should have considered canceling my last three or four treatments. I wish I'd spoken up, because I think at that point my skin became damaged beyond repair.  My neck even has some permanent damage.  I can't wear necklaces any more; the chains chafe the skin and really bother me.  Some collars are the same way.  In my previous post I mentioned seeing my radiation oncologist when I started having pain about a year after having radiation.  I actually saw a different oncologist as mine had left the practice.  He was horrified when he saw how much damage I had.  I wonder if he would have done things differently or at least stopped the treatments sooner.  Oh well, what's done is done.

    Again, good luck!

    Sandy  

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  • bluewillow
    bluewillow Member Posts: 779
    edited April 2009

    Hi all,

    Kritzy, I've had symptoms that are very similar to yours, and they come and go, and I'm glad to know I'm not the only one too.  My last radiation treatment was a year ago this month, and I have complained to both my rad onc and bc surgeon, been checked out, and they seem to both think it is a normal part of healing after bc treatment and was probably a seroma. (would a seroma hang around this long?)  Like I said, my symptoms come and go, and just yesterday morning, I woke up with my right boob feeling swollen like a football, itchy in spots, with some mild pain.  The skin under my breast is also red-to-very-tan all of a sudden in the same area where I got red during radiation.  I had very little radiation damage compared to a lot of ladies (sorry to hear about those of you who had a rough time w/rads), so I'm not sure what's going on.  I have an appointment with rad onc April 22 and surgeon/onc on April 29, so I'll get checked out, again.  I'm glad Binney saw this post and gave some great advice and info on LE-- she really knows her stuff.  Take care and I hope you heal quickly!

    Mary Jo

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  • kritzy
    kritzy Member Posts: 10
    edited April 2009

    Thanks all.  But I have had conversations with my rad onc, my medical onc and the lymphedema specialist and they all assured me that my lymphatic system is not compromised and IS NOT the cause of my swelling.  I also specifically discussed cellulitis and that was ruled out too.  Basically, I have tissue damage from the radiation that is causing edema (another word for swelling - one can also get edema in their ankle if they twist it).  There are many causes for swelling and a compromised lymphatic system is only one of them. 

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  • bluewillow
    bluewillow Member Posts: 779
    edited April 2009

    Hi Kritzy,

    Did your doctors say anything about the edema possibly leading to cellulitus?  I have done some reading about it while trying to figure out my problem, and it sounds like that's a possibility.  Just be careful because it sounds like the cellulitis can be dangerous.  Throughout my entire treatment, my doctors never even mentioned LE, I guess because I had a sentinel node biopsy and LE isn't usually found after an SNB. 

    Did your doctors mention how much longer you could be dealing with the edema?  Good luck to you.

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