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All TopicsForum: Lymphedema → Topic: 1 1/2 years after mastectomy...

Topic: 1 1/2 years after mastectomy...

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Mar 24, 2007 04:31 PM

maryannecb wrote:

...and almost one year post rads I think I have early LE.

My arm has always been normal post rads. I did have cording early on but managed to stretch and exercise and my arm looked normal and felt normal. I was feeling very complacent about LE.

Then, over the last two weeks I have developed a redness in my chest wall beneath the axilla, it has become slightly swolloen and the area of redness has enlarged. It does not hurt it just feels warm and gushy. My upper arm feels slightly bigger but my lower arm looks a little doughy and if I press my thumb into it It leaves a mark which goes awy within 30 secinds or so. Also my forearm hurts a bit. My hand looks fine.

My pcp referred me to OT, no appt yet. It sounds like LE to me. It seems so long after treatment though.

Should I be worried about recurrence in my axilla being the cause of this late presentation? Do you think I should check with the onc? I have no appt until June but could probably get to see him sooner.

Also is there any place where I could learn self massage as it may take time to see the OT?

Thanks,

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Mar 24, 2007 07:12 PM Binney4 wrote:

Ooof! Nasty surprise, maryanne! I'm so sorry. It's unfortunately not uncommon to develop LE even several years after treatment. If I were you I would definitely check with the onc, if only because a therapist is no doubt going to ask you to clear it with him first.

Actually, Maryanne, because of the redness and warmth you mention, it really makes sense to go to Critical Care (do you have those in Canada? It's not an ER but they see you even on weekends, etc.) TODAY. Like, now. The reason is that in the presence of LE, a cellulitis infection can either be acute or it can "smoulder" for a few days or even weeks and then break out into a very volatile and difficult infection. You want somebody to look at it with the possibility of infection in mind and decide if it needs immediate antibiotic treatment.

The cording, by the way, is now (after the results of some recent research) considered by some to be a form of LE, and it seems to be predictive of later swelling, as you have sadly discovered.

As for what to do until you can see a therapist, there are a few things that help (besides seeing about Critical Care right away, that is). One is to keep your arm elevated as much as possible, whenever you're sitting watching TV, on pillows at night, whatever. Avoid heat, including long soaky showers or baths and even dishwater ( heh-heh!). Keep your skin well moisturized to avoid tiny cracks, and avoid nicks, cuts, scrapes, burns, and hangnails. A skin-tight, long-sleeved biker's sport shirt in a size smaller than you normally wear can help control swelling temporarily. And of course don't over-use the arm.

Okay, I sound like an alarmist, but as any number of women here can tell you (and probably will) it's a whole lot better to check it out and find it's nothing, than to wish you had.

The GOOD news is that LE can be dealt with and controlled, and with a well-trained therapist you'll soon have all the skills you need to keep it that way.

PLEASE keep us posted--you'll be in my thoughts!
Binney
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Mar 24, 2007 08:49 PM maryannecb wrote:

Thanks for the info Binney, I have often read your posts and thought how helpful you have been to all of us about this complication.

I have a medical background and right now I am suspicious about infection because of the redness but it is really not sore. Naturally it is where I have no feeling from surgery so probably wouldn't feel pain anyway. You are right I should likely take an antibiotic to see if it improves, that would tell the tale.Then I can track down the onc next week to see what he thinks.

Thanks again.

Fists up!(especially my left one,LOL)!
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Mar 27, 2007 01:52 PM maryannecb wrote:



Binney,

I saw the oncologist today, could not feel any evidence of recurrence in axilla, yeah. He saw no evidence of infection double yeah. With he said it may stay the same for years or progress. Wearing a sleeve would not help...OT would not help...both will help with symptoms (swelling and discomfort but will not change if it progresses or not. So I will look in to this myself, I'll go read the lymphedema stuff you often recommend and likely at the least talk with OT about massage and get fitted for a sleeve.

Does this sound good?

Fists up!
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Mar 27, 2007 02:48 PM Binney4 wrote:

Hooray for no infection and no recurrence! (Whew!) Your plans sound good. As for progression--hmmm. If you control the swelling of LE, wherever it occurs, you do prevent the formation of fibrotic tissue that can worsen the LE by further blocking lymph flow, and result in limitations in range of motion as well. And you also lessen the chance of infection. In fact, there is research (done by Foldi, I believe) that finds that treating post-BC LE in particular almost entirely eliminates spontaneous infection, which is the sneakiest kind. Which is why, of course, our insurance will deem to pay anything for treatment (however reluctantly). On the other hand, since we're all planning to live long, productive lives, certainly we can't expect our LE will remain exactly as it is. So in that sense it'll progress despite all.

All of which just proves that I'll go a loooong way to avoid contradicting a medical professional. Because, me? I aren't one!

Congrats on all the good news, and do let us know what the OT has to say!
Binney
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Mar 27, 2007 03:22 PM maryannecb wrote:

Thanks Binney, you are the best.

Fists up!
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Mar 29, 2007 05:05 PM maryannecb wrote:

I spoke briefly with the OT, she will fit me for a sleeve in two weeks and assess if I need a massage. Fortunately we do have a certified massage therapist so if I need it I will get it. She also intends to do some education in the cancer centre as she feels there is a lot of evidence that early treatment can help progression and education prevent it altogether.

Fists up!