help! open sores 5 months post-rads

KS1 · January 2010

I had 2 operations to remove BC high in axilla & down my arm (22 lymph nodes removed). This was followed by radiation to axilla & arm. I didn't get chemo. Post-radiation, I developed a very large granuloma (2 inches x 2 inches x 2 inches tall) in my axilla that was pressing on my brachial plexus and aggrevating neuropathy. The surgeon did 3 incision & debridement procedures. It's now 4 months since the last I&D and the area is still not healed. It goes through the following cycle: area becomes less pink & rate of serum seepage from area slows down -> lump starts growing -> area "opens up" and bleeds and gets inflamed. The surgeon says that irradiated tissue doesn't heal well, and there isn't anything more he can do surgically to improve healing. He also says he doesn't think there isn't anything I can do to speed up healing.

I don't like this answer -- there's got to be something that can be done! Does anyone have advice how to speed up healing, or at least prevent more bad infections? (I've only had one bout of cellulitis so far. ) Is there a medical specialist (doc, nurse, therapist?) who deals with wound healing?

I've been wearing dark shirts and changing them 3+ times a day (can't put bandages on -- the skin is too fragile), washing the area carefully, and applying topical antibiotic creams twice a day. But with open sores and no lymph nodes, I feel like I'm a ticking time bomb infection-wise. I would be grateful for any advice on what to do/not do.

Thanks, KS1

sheila888 · January 2010

Hi KS1.....I hope you find this information somehow helpful.

http://www.columbiawoundhealing.org/

Wherever your location is you can start looking a center closer to you.

Good Luck in your recovery.

Sheila

sophbail · January 2010

Hi KS1,

Sorry to hear about your wounds. My sister was diagnosed with IDC in July '09. She has been on chemo since then and hopefully will have her surgery the last of this month followed up by rad.

I'm letting you know this because her cancer invaded all her breast tissue and she has had open wounds since July. All this time since july (receiving chemo too) we have been taking her to an infectious disease specialist who also deals in open wounds. We went to him at first every week, now we are down to every 3 weeks. He has been fabulous. We clean, put medication and new bandages on daily since July. She has one small wound to heal. Her breast was a mess to say the least. Her oncologist said that he has worked a miracle on her. They had to get her breast healed before surgery due to removal of breast.

You might want to ask your doctor about a refferal to this type of doctor. Hope this helps. Pam

Kodapants · January 2010

On my radiation burns I suggested they used a product called vasoline gauze. I used it as a home health nurse. It works great. Good luck.

AsiaYM · January 2010

Hi, there,

I read somewhere said that we need sufficient nutrition for body to heal faster, so I am planning to have 100% Total cereal for breakfast and a pill of multivitamins, and 1/2 of bottle of Ensure made by Abbott, provides 24 essential vitamins and minerals for snacks between regular meals. You might want to try it if you think you don't have enough nutrition. And, of course, plenty of liquid too. Karen

kira66715 · January 2010

KS1

The hospital near my work has a wound care center: they have hyperbaric oxygen, and actually use "medical maggots"--they also do more conventional treatments.

It's staffed by surgeons.

So I'd suggest a wound care center.

I do work in rad onc, and the head rad onc is big on the vaseline gauze.

It sounds like a chronic granuloma that never fully forms epithelium over it.

Hope you get some relief soon: I know from the other thread that you have a bat mitzvah coming up, and some permanent healing would be timely. (I appreciated your reference to the fakatah arm....)

Kira

swimangel72 · January 2010

I agree with sophbail - you need to stop looking to a surgeon for a solution and go see an infectious disease specialist who will culture your wound and put you on the proper antibiotics. You may even need IV antibiotics. He'll also be able to help you with a wound vac - you may be able to use a portable one. I'm so sorry you're suffering like this - but truly, at this point in time, do NOT waste any more time with a surgeon...........make an appointment ASAP with an Infectious Disease Specialist. Good luck and God bless!

KS1 · January 2010

As per Seyla88's suggestion, I called Columbia's Wound Healing Center. I can't be seen in the clinic because I don't have the right insurance, but I have an appointment next week with the head of the clinic during his private office hours. They deal mainly with lower extremity diabetic and venous insufficiency wounds, but the woman I spoke to says that they also see many patients with axilla wounds. (I wonder how many of these patients are breast cancer patients.)

Kira, it would be so wonderful not to be oozing gunk at my daughter's Bat Mitzvah, but I would settle for celebrating without cellulitis. Maybe I could wangle prophylactic oral antibiotics for the few days before my daughter's Bat Mitzvah. - KS1

PS What is the protocol WRT use of screen names vs. real names on posts?

kira66715 · January 2010

KS1--screen names vs. real names are completely up to you. Some people use a screen name and post their real name on their signature, or share it during pm's.

It's a privacy issue as these boards can be viewed by all, and Binney knows of marketers and physicians who read them as market research....

Also, once we wrote something about Susan Love, and once Julie Silver, and they popped up--so some people google search themselves and monitor the boards (not to be paranoid).

I've shared the name of my onc.

The only rules are not to be selling something to be respectful--there are more if you read the community rules.

.

NativeMainer · January 2010

I went through the same thing, for a full year after rads. I did surgery, hyperbaric oxygen, dressing changes of all kinds, finally fixed the problem by having a mastectomy. A lot depends on how long you are willing to deal with this, up to a year to heal WITH daily hyperbaric is not unusual according to the wound center doc. Also, never healing happens about 25% of the time according to that same doc.

KS1 · January 2010

Hi Native Maine,

Unfortunately, a mastectomy won't help. My tumor was in my arm and axilla -- not my breast. The ironic thing is that, despite all that was done to my arm and the subsequent problems (brachial plexus neuropathy, venous insufficiency, lymphedema, and the darn open sores), my breast is absolutely the same as it was before (my breast proper wasn't even irradiated). As everyone keeps telling me, mine is a unique case -- no one at Sloan Kettering or Dana Faber have never seen breast cancer in the arm. It is not good to be a fascinating case!

I hope the god Thwartacus isn't listening, but the last 2 days, I have had a lot less drainage. My husband keeps telling me not to get my hopes up since the decreased drainage has happened before, But, perhaps getting an appointment with the wound center is like making an appointment with an auto mechanic ... once you do, the weird sound you have been hearing for months goes away. KS1

KS1 · January 2010

Saw the wound care plastic surgeon yesterday. The good news is that the wound looked really good (indeed, first morning ever without any discharge). Maybe the schedule-an-appointment treatment worked!

That said, the doc is concerned about the fact that the wound hadn't healed and bleeds periodically. He said it could just be an inflammatory process, but the question is to what. I've been cultured and nothing bad has grown (just normal skin flora). The second best possibility is radiation induced necrosis - but I only got 60 Gs to the area.

The third possibility -- and the one he is worried about -- is that there is a cancer recurrence. I protested saying I had a negative mammogram post radiation, but he said that given the amount of scar tissue, the location etc., that isn't all that reassuring. He did say that it would be surprising to have a recurrence this soon after radiation. He also wasn't all that pleased with two small "bumps" (such a kinder word than lump). I said I thought they were just hard-working lymph nodes (I think they get bigger and more tender when the wound is worse). He said we can't assume this, especially given I had a level 1 & 2 ax. node dissection). he thought the bumps should be biopsied and to call my BC surgeon right away.

I left with that horrible dread/misery stomach churning feeling I've felt each time I have had a set back. I simply can't bear to call the surgeon ... my daughter's Bat Mitzvah is in 9 day and I don't want it spoiled by the possibility of bad news. Part of me just wants to pretend the whole thing isn't happening. My compromise is that I have a regularly scheduled appt. with my medical oncologist on Monday and I will show her the bumps.

I use "show her" on purpose ... I had a large 1.5 cm cyst that she didn't even notice until I brought it to her attention! Because of this, I have been meaning to switch medical oncologists but somehow every day, I just don't seem to get to it. Denial and delay.

I hate breast cancer. -- Karin

ravdeb · January 2010

I would definitely see somebody else and get a second opinion on the wounds not only with an infectious or wound healing specialist but another radiation oncologist. Try to get to the root of the problem as well as the healing of the tender skin.

leslie43 · January 2010

sounds awful. i use split aloe leaves - rub juice straight onto wound. really bad cuts, burns etc i leave leaf on for a few hours. magic. cant hurt to try???

help! open sores 5 months post-rads

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