Input requested for radiation after mastectomy and lymphodema

[jaykay]

Hi,

I have one more TCH to go (yippee) and of course another 9 months or so of herceptin.

I need to start looking into radiation treatments since I had 1 sentinel node positive and a surprise little tumor near the major tumor. Right breast.

My question and concern revolves around the possibility of lymphodema. I know that in the grand scheme of things (cancer), it is secondary, but it really concerns me that my right arm could be seriously affected since they will be zapping my lymphs. Also, if you've had a mastectomy, what do they end up zapping in addition to the underarm lymphs?

I am very much interested in any experiences or hints that helped you with your course of rads. Had it on my left breast after lumpectomy 13 years ago and really skated through with aloe Vera gel. Minor skin irritation.

I'm just trying to get some information so I can meet with the radiation oncologist with a bit of information from real people and not just studies.

Thanks in advance

Janis

[tricia keegan]

Hi Janis,

I also use the natural aloe vera and only went pink and had no burning or pain, I also thankfully didn't get lymphedema, I don't think they know why some get it and others done other than being careful with the known risk factors of course, good luck with yours and hope you sail through it.

P.S I had a lumpectomy but think with a mast they zap the surgery site along with neck glands and underarm I think.

[jaykay]

Thanks, Tricia. It is always a crap shoot, isn't it?

[LeahM]

Hi Janis,
I finished rads about a month ago. They zapped the entire right breat area, my right axilla. And the lymph nodes at my right clavicle. Each time I went in I got 4 zaps, one to the entire breast area, one to the axilla and two to the clavicle area. One of those went "deeper" then the others. I did that 28 times then had 6 booster zaps to the incision line (they made a mold). I did well using eucerin and betamethasone (prescription) to the really itchy areas. Also, my back got pink from the "exit" area. Luckily I have not had an issue with lymphadema but I know its possible.
I hope your last chemo goes well, you should be proud of yourself .
Best wishes
Leah

[kvogler]

Just finished my rads this past Friday!! Yay! Like Leah said 4 beams just like she said and a "boost" to the scar line the last 5 treatments. I don't have lymphodema yet and I fly for treatment at a cancer hospital out of state. I do wear a sleeve when flying but that's all. I try to avoid things they say trigger it but no problems so far. One doctor told me it's more of a problem if you're not in shape to begin with. If you're your ideal body weight like I am, it tends to be less of an issue.
I am really bad to burn so my treatment left me with red skin like a really bad sunburn. They gave me a perscription for an antibiotic cream should the skin start to break open, but so far it's just peeling a bit just like a sunburn. But my skin held through enough to complete my treatment which surprised me because I have skin that never tans and burns really easily.

[jaykay]

Thanks, Leah and Kvogler. I like to go into the doc's prepared and at least I won't be freaked out. Very different from the first rads I had with just the lumpectomy. I am in good shape (very young 61 :-) and know I need to take precautions.

I really appreciate the input kind thoughts. This is the best board out there - who needs an in-person support group when you have this one?

Best

Janis

[sarah]

a physical therapist will see you after the mastectomy and massage your arm and show you exercises to do to avoid problesm. basically one is to keep your arm straight up and gently open and close your fist on a regular basis - no need to squeeze hard and should be done the same speed. do this daily.
take care
sarah

[jaykay]

Thanks. Sarah. I had my mastecomy in October, 2012. Didn't think the lymphs were affected until after via SNB, so am concerned about the radiation effects. They only took out 4 lymphs, 1 of which was positive for micromets. Surgeon was surprised as well (hate when that happens!)