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All TopicsForum: Living Without Reconstruction After a Mastectomy → Topic: How to deal with radiated skin in the years after treatment

Topic: How to deal with radiated skin in the years after treatment

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Mar 27, 2009 11:14AM, edited Mar 27, 2009 11:19AM by Erica

Erica wrote:

This is a subject I haven't found much about on the discussion boards or anywhere else on the web, so I thought I'd raise it here. I originally had a lumpectomy and radiation on my right side, then several years later, had a bilateral mastectomy. It's now been almost six years since I had the radiation. The skin on my radiated side is definitely different than the other side. Although it doesn't look different, I don't perspire on that side, the skin tends to be drier, and at times it's prone to irritation and rashes.

A few weeks ago, I noticed a small red area on the radiated side. It looked rashy, though not raised. Most of my chest has feeling, but that area is slightly numb, so perhaps that's why I didn't feel any itching. It waxed and waned, then one day after a long walk on a hot day (I'm in a warm climate at the moment), the area got bigger and redder and I noticed other faint red areas. I'd been wearing my Still You camisole with a lighter-than-light Amoena 126 leisure form, but when I held the form up to my chest, the red patches seemed to follow the outline of the form. So I guess my skin is reacting to the heat, even when I'm not wearing anything hot or heavy. 

I started using a steroid cream on the spot and that seems to be helping. I also didn't walk yesterday. But I like to walk everyday and want to do so without worrying about getting a rash. Just wondered if any of you knowledgeable ladies have any thoughts or advice. I know some of us are more sensitive than others. I'm one who definitely can't wear silicone against my skin, while I know others can. I've always been prone to rashes, so I suppose radiation has made this tendency worse.

I'd just like to know the best possible skin care to prevent this and what to do if I develop a rash. Hopefully, any advice you might have will be helpful to others as well as to me. I'll be returning north soon and will ask my doctor about it, but the collective experience of all of you who have been through this is often the most valuable. My physical therapist has a favorite saying about radiation--she calls it the gift that keeps on giving. I can see what she means!

I guess one solution would be to just wear comfy cotton tees when exercising and forget about breast forms. But I look so flat (as opposed to friends who still have breasts and are "flat-chested") and I haven't gotten over my self-consciousness about that. Any pep talks on that score would also be welcome!

Barbara

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Mar 27, 2009 01:26PM nagem wrote:

Hi Barbara, Well, you know I've got a prejudice for the go-without way. I really don't think anyone notices. If I were 20, it might be different, but I'm not. How about going form-free and wearing a lightweight linen overshirt over your T shirt or tank top? You don't have to button it, just something that slightly obscures the terrain so you don't fee self-conscious. I've gotten so used to my flat chest that when I do wear my strap-on boobs, I feel they make me look fat!

Oh, and I find Eucerin Calming Cream helpful for whatever little irritations have developed over the years. Bonus: it doesn't have parabens. I've stopped getting rashes, but every once in a while my underarm on the radiated side develops a dry, crusty surface. I've stopped using deodorant on that side and started lathering it with Calming Cream instead, and that seems to help.

nagem (underthestinkwoodtree.blogspot...)

Dx 9/23/2005, ILC, 1cm, Stage IIa, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Mar 27, 2009 09:39PM Erica wrote:

Thanks nagem,

I was hoping you would weigh in. I will try the Calming Cream. I used some cornstarch today to keep the area cool and dry and that seemed to help.

I agree that wearing an overblouse might make me feel more comfortable flat. I go flat at home more these days, so maybe I'll gradually get used to seeing myself in the mirror that way.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Mar 28, 2009 12:16AM starzhere wrote:

I don't know if this is any help, but when my friend was going through radiation, her doctor told her to use Aquaphor on her skin.

It's interesting about the side effects of radiation.  My father is suffering some post affects from the radiation he had to undergo for prostate cancer, that he had about ten years, ago.  He had no idea that there was a possibility of bladder and bowel problems as a result of the radiation.

When women are told to have a lumpectomy with radiation, I wonder if they are told of all the possible complications that ocurr, later.  I know that I read recently, that lumpectomy with radiation has as favorable a result as mastectomy, but that's for the first five years only.  There is, in reality, a higher risk of recurrence with lumpectomy over the life of the woman.

I've known quite a few women who had a lumpectomy with radiation, who later had to have a mastectomy and they developed lymphedema, probably as a result of the earlier radiation.  Based on what I now know, if I develop cancer in my remaining breast, I'd opt for a mastectomy to avoid the radiation.  I'm all for keeping as much of myself as healthy as possible, which is one of the reasons, I decided not to have reconstruction.

I'm just wondering what all of you think, based on personal experience.

Dx 10/31/1989, IDC, 1cm, Stage I, Grade 3, 0/12 nodes, ER-/PR-
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Mar 28, 2009 07:45AM nagem wrote:

You know, it's funny. I didn't really have a choice about avoiding radiation, since I had a positive lymph node. I started with a lumpectomy and a year later had a mastectomy. When I told my oncologist I was going to have the mastectomy, she referred to it as "barbaric." But what's more barbaric than a lifetime of side effects from radiation? I think doctors assume that women are universally invested in their bosoms and will risk anything to hold on to them. Radiation is the only part of my treatment that continues to give me (minor) troubles.

nagem (underthestinkwoodtree.blogspot...)

Dx 9/23/2005, ILC, 1cm, Stage IIa, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Mar 28, 2009 10:46AM may8 wrote:

Dear Barbara--You could benefit from 100% aloe vera gel.  You can find it at at any health food store. Better yet you could buy the aloe plant from a nursery--you need to purchase the medicinal  aloe plant as there are several varieties of aloe vera.  Just cut off a leaf and appy the gel which can be squeezed or scraped from the center of the leaf.   Also,   the forms are helping to create heat and friction issues in that sensitive area.  If you don't feel comfortable going without, a regular bra which is lightly padded and retains its shape on the hanger would give you some depth without needing any additional inserts.  Hope you feel better real soon!

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Mar 28, 2009 12:52PM, edited Mar 28, 2009 06:56PM by lilums

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Mar 28, 2009 12:57PM Annabella58 wrote:

Hi Barbara!

I am the "rash queen" since rads, 8 years ago.  Have now successfully had a mtxmy and a good recon but still get all itchy.

In my case, the culprit is sweat and deodorants.  I've moved to using no deodorant on that side (pyew! But I notice no odor from the rads side, actually) cornstarch, all cotton.  I had a silicone foobie I stuck in there before recon inflation and oh what a rash from that girl when I sweat.

It sounds like a new cotton t shirt might be your best friend.  Also, I had to give up the silicone and any bra with any synthetics in it.  sports bras have alot of that stuff in them.  I used the little insert from the Softee camisole, destuffed it to where I wanted it, and since it is cotton with poly fill, it gave me the look I wanted without weight or rashes.

Good luck! (I am allergic to aloe and most creams...I used cocoa butter or olive oil)

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Mar 28, 2009 01:23PM, edited Mar 28, 2009 06:56PM by lilums

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Mar 28, 2009 01:41PM Alicia wrote:

What a good question. I just finished rads and am hoping to heal from the initial burn. My radiation oncologist told me not to use the aloe from a plant and said the pure aloe vera gel doesn't work. Some people at my cancer center use corn starch. 

I agree with Nagem about a mastectomy being less invasive than rads, for some of us anyway. I ended up having to have both. I think some docs do make the assumption you mention. Maybe it depends on who is making the recommendation. Surgeons seem to be more open to surgery! Ultimately the most invasive aspect of the surgery is the axillary dissection, which can be necessary with either surgery. 

Dx 6/2008, IDC, 1cm, Stage IIa, Grade 3, 3/17 nodes, ER+/PR+, HER2-
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Mar 28, 2009 04:44PM, edited Mar 28, 2009 04:46PM by JO-5

 Here is my story about radiation and rashes!  The first rash I had - about 4 months after rads ended up getting a punch biopsy and it turned out to be from wearing a bra and pj's that I did not wash first. It seems that the fire retardant and formaldehyde that is in all clothing caused a reaction in the radiated breast.

The second rash was caused by Lavender Lotion on the same breast.

Since those two times --- I don't touch that area with anything but Dove soap, and Gold Bond healing Lotion. If I use a harsh soap I still get a rash and I am almost 5 yrs. out.

My rad. onc. says it can happen right away or many years out. She said that once in a while something reminds the body of the radiation and it reacts.

Some ladies that originally had a lumpectomy and rads. then later have a recurrence and have chemo will have a radiation reaction at the original site just as if  the rads were recent.

My suggestion would be to double rinse anything that touches that area.... use Dove or any mild soap (not Ivory - it has alcohol in it). and some kind of unscented lotion or cream, and NEVER put a heating on that area.

JO

dx.04 IDC, tumor 1.4 cm, stage 1, grade 3, lumpectomy w/clear margins, 0/16 nodes, ER+/ PR+ over 90%, HER2 negative, 35 rads w/3 boosts, Arimidex 5 yrs.

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Mar 28, 2009 07:55PM starzhere wrote:

An aquaintance of mine, recently told me that her friend is going to have a lumpectomy and radiation.  Her surgeon told her that if she weren't so large breasted, she would have to have a mastectomy because the tumor is large .  I know for a fact, that this particular surgeon is very proactive toward women keeping their breasts.  She is going to need fairly intense radiation.

I asked my friend if the doctor told her about the possible long term affects of the radiaiton.  For example, if she were to have a recurrence and mastectomy, it might limit her choices for reconstruction, or that it might increase her chances for lymphedema.  She said non of that was mentioned.  Sometimes, because of their own bias, doctors will present women with limited choices.

Dx 10/31/1989, IDC, 1cm, Stage I, Grade 3, 0/12 nodes, ER-/PR-
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Mar 28, 2009 10:01PM Erica wrote:

Thanks for your responses. I'll try to keep the area as cool and dry as possible and use non-irritating products and see if that helps. I love the warm weather, but I can see that it presents some challenges at the moment.

To be honest, as long as whatever this is doesn't turn out to be skin mets, I'm sure I can handle it. I was actually sort of relieved when I noticed the rash seems to follow the outline of my breast form, which hopefully indicates something benign. Ever since my bc diagnosis, it's hard not to think of worst-case scenarios. Though I try hard not to be too alarmist, I am a worrier. I really appreciate being able to share these concerns here.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Mar 29, 2009 02:09AM starzhere wrote:

Worrying is understandable.  I still worry and I'm a 19 year survivor.  Unfortunately worrying comes with the territory.

 ~elaine~

Dx 10/31/1989, IDC, 1cm, Stage I, Grade 3, 0/12 nodes, ER-/PR-
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Apr 1, 2009 10:26AM, edited Apr 1, 2009 10:28AM by Erica

Just wanted to report back, in case this might help others. I'm pretty sure I've discovered the source of my "rash". About a month ago, I tried using compression to help alleviate another radiation-related issue--a small pocket of fluid on my chest, just in front of my axilla, that has never resolved on its own. It was in the days after I tried using a pad of foam chips under my bra that I noticed the red spot on my chest. After trying compression for short periods over a few days (I also tried the foam pad briefly with a binder that felt really tight), I realized that my chest simply couldn't withstand compression. Even before bc, I couldn't stand the feeling of tight bras and, of course, after the bilateral mastectomy, the sensitivity to pressure has heightened on the radiated side.

The "rash" actually seems to be bleeding into my skin (petechiae and telengiectasia) caused by the pressure. Once the area was injured, every time I even wore a bra that was a little tight, it made things worse. Plus, it's been hot and humid where I am lately and that hasn't helped. I talked to my PCP on the phone and he said what I described was completely consistent with the bleeding theory. So, I have to wear my lightest, least compressing bras and breast forms (or nothing at all) until the injury heals, and also avoid hot showers and ibuprophen (Advil/Motrin), which can thin the blood and cause it to bleed more easily.

Just when I think I know all the side effects radiation and mastectomy can cause, along comes a new wrinkle!

Barbara

My doctor assured me that once it fully heals, I won't be more susceptible to this than in the past, but clearly I'll have to make sure not to put too much pressure on my chest. He said the radiation makes all types of drainage (of blood as well as lymph fluid) more challenging, so it will take a while for the injury to heal.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Apr 1, 2009 10:50AM desdemona222b wrote:

This may seem ridiculously obvious, but a little athlete's foot powder in these areas can really help.  You can end up with a sort of yeast infection of the skin in hot weather - I'm very prone to it.  A little dab of athlete's foot cream can't hurt, either.

Dx 11/17/2001, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2-