Painful mx scarring? Scar revision?

greenfrog · February 2012

I have had bilateral mx - not at the same time. The cancer side healed like a dream and causes me no problems - I don't have a problem with scarring usually. But the scar from the prophylactic mx is hypertrophic and is agony. I cannot wear a prosthesis. I have been pushed around from general surgery to dermatology to plastics with no luck at all. The only solution my PS came up with was to have recon which is really don't want. I have now been dumped and told to "manage" it.

Has anyone had painful scarring too and had scar revision? Or found a way to manage the discomfort?

Erica3681 · February 2012

Just wanted to say I'm really sorry you're experiencing this. It seems that the dermatologist should have had some suggestions--scar revision, steroid injections, something.

I don't know how reconstruction would help, as you might develop another hypertrophic scar. I would guess that's the concern with scar revision, too, that it would make things worse rather than better.

Perhaps you should consider seeing a doctor who specializes in pain issues. A low dose of a medication like gabapentin, which has a good safety profile, might alleviate a lot of the discomfort. It's sedating at first, but that effect usually wears off.

Or, have you considered physical therapy? Sometimes, paradoxically, gentle myofascial-release-type massage might give the nerves in your scar some "feedback" that would ultimately reduce your discomfort. It seems a shame that you can't wear a breast form (prosthesis), even if you want to.

I'm not sure how your healthcare system works, but maybe the first step (if allowable) would be to arrange a consult with a second dermatologist. In the U.S., at least, that's the kind of doctor who would know most about treating hypertrophic scars.

Barbara

greenfrog · February 2012

Thanks for your reply Barbara. I have been through most of the options available but had little success - mainly because treatment of the scar was left too late. I don't understand their theory behind offering recon but not revision. There does seem to be a disparity between the care and precision they take over getting reconstruction right and the slapdash way a lot of mastectomies are handled. I am happy to live breast free but the pain and downright depressing ugliness of this scar is something I hadn't banked on. I am hoping that once I move to another area in a few months that I will have access to a different team of dermatologists/plastic surgeons who might be more inclined to revise the scar and then manage it carefully afterwards with steroids etc. I think perhaps the PS at my current hospital feels she might be treading on the toes of my breast surgeon if she started tidying up her handiwork!

By the way - keep up the good with with Breast Free - I direct a lot of women towards it. It is a terrifically important resource.

Starak · February 2012

Greenfrog: Granted my situation was quite different from yours but still... I think you might be on even more solid ground than I was due to your greater level of pain.

First, my advice is to embrace "recon". Before you lose your mind and try to strangle me, take a deep breath and look at this link.

http://www.dol.gov/ebsa/pdf/cagwhcra.pdf

Google WHCRA for even more links and info.

I was left with dog ears in the dead center of my chest which meant that I had to essentially compression wrap them every day of my life in order to keep them from showing through my clothes. They were too close together to allow for the wearing of anything with a center seam and so I had no option but to go flat until they were surgically removed. I had nerve issues that were being exacerbated by the strapping down every day so I had that additional element. I have found many doctors think dog ears, or anything else left, are no big deal and that if you are not going to "recon" as most think of it, then why bother. After you read the link, you come to realize that you are entitled to all stages of recon on the same basis as the insurance's coverage of mastectomy. Also many states have additional laws in this regard. Let's face it, insurance is always looking for a way out. So again, I say to you embrace "recon" and lose "revision" in your conversation. I am NOT an attorney and do not even play one on TV. Still my understanding is you are entitled to every stage of recon. Thing is you and I only want/wanted one stage. It's a semantics issue. Recon related to mastectomy due to BC, they have to cover, scar revision maybe/probably not. My Mutant removal was submitted, approved, and paid by insurance as "recon", even though I now (Thank you God!!!) have the nice flat chest of a 10 year old boy, instead of looking like I had horns growing out of my chest. Concentrate more on the fact this scar is causing pain. Don't forget a part/stage of what is done in the whole traditional recon process is cleanup.

You come to realize that many PS think it is a waste of their artistic talent to just clean up the original MX site and leave you with the smooth chest of a young boy so yes you will likely have to work harder to get a sympathetic ear. Also if you are turned down the first time, appeal, quote the statutes, go after them. Threaten to call your state and/or fed reps if need be. There are no guarantees in this game, but if I was in your position, I would not be going down without a fight and one that is going to embarass the heck out of the insurance company if they refuse to relent. Mine actually went far smoother than I anticipated but I was fully prepared to go to my state reps and make it a public issue if need be.

Wishing you all the best in having this resolved.

Barbara

greenfrog · February 2012

Barbara thank you very much for your reply. But I am in England - all of our health treatment (including reconstruction) is free so we don't have any issues regarding insurance thankfully. I have no idea why they are being so sticky about the revision issue - perhaps because it is interdisciplinary and neither dermatology or PS want to handle it. I don't really know.

It is very interesting to hear of your experience. (What a pain it all is - in more ways than one!)Thank you so much for your good wishes - the same to you too.

Starak · February 2012

Oops - should have noticed the UK thing but who knows may help someone here in the US who happens to read this. Thank you for the good wishes too. I am at a point now that if things can just stay as they are I am in great shape.

Barbara

Outfield · February 2012

Greenfrog, I have no idea if this will work, but I've got a different painful issue and was really upset at the first PS I saw. This is way, way out there, I admit. One of the things I am doing is trying to to find a PS who has done some female to male gender reassignment top surgeries. I don't want gender reassignment, but I wonder if someone who has enough of an open mind to do that surgery would look at me differently than a reconstruction assembly line worker. I have little idea how this works in this country, let alone a different one. But it's a different perspective, I guess.

dogeyed · February 2012

STARAK, you helped me with your tips on insurance. I have a very large dog ear under my arm, and it actually gets in the way when I sleep and sometimes hurts, so I'll be prepared if I decide to ask for that part to be removed.

FROG, seems to me if one side went well and the other didn't, something is amiss. But I do still have a sensitive sore place right in the middle, I somehow imagine it is scar tissue gone wrong. I DO know for the four or so months after surgery, my scar didn't look right at all, and I had seen pictures of the way they do, so I was concerned. It finally flattened out, but pulls pretty tight near my armpit. I'm glad some others here posted about massaging it. I had been putting the prescribed Radiaplex lotion on it faithfully, I had rads shortly after surgery, but once it all healed, I stopped. But I think I'll pick back up with it as a daily thing. I also rub my dog ear, but I have no idea if it will help.

Just my two cents everyone. GG

greenfrog · February 2012

Thanks very much for your great comments everyone. As Barbara said, somene reading this might find the info useful so I thought I would detail my painful scar problems to date.

I was finally referred to dermatology when my scar was a year old and it was clearly not healing as it should. I should have been more proactive in getting it seen to but as I have never had a problem with scarring I figured this was just taking its time - and I had some notion that with all the cancer treatment my body had changed and blah blah.

Anyway I was packed off to dermatology where the surgeon told me it was hypertrophic and started me off on steroid gel strips. She told me that they only work in 10% of cases and after 3 months and no improvement we moved on to steroid injections. They hurt like hell and 3 months later there was no improvement. The dermatologist suggested re-excision followed by radiation. I obviously stonewalled the radiation idea but thought that revision by a skilled PS who would follow up with steroid injections etc was the right way to go. PS refused point blank (whilst continuing to push me in to having 10 hours of DIEP surgery). She suggested that laying micropore tape directly on the scar had worked well in burns patients. 3 months later - no improvement. I was advised to massage it regularly and keep pressure on it and was then shown the door. Outfield - your comment about reconstruction assembly line really resonated! I have decided to try and get a second opinion referral to a different plastic surgeon - I'll let you know what happens!

By the way - the surgeon left a fair amount of breast tissue in the prophylactic mx (unlike the cancer side which was scraped to the bone) and the derma people felt that dragging weight had contributed to the development of hypertrophic scarring.

Erica3681 · February 2012

Hi Greenfrog,

Your very last comment is especially interesting. If the dermatologist felt that the dragging weight of extra breast tissue contributed to the hypertrophic scarring, all the more reason to think that revision of the scar, including excision of extra breast tissue, might result in a non-hypertrophic scar. But maybe a breast surgeon would have to get involved to deal with that, which might make things even more complicated for you.

You've obviously done everything right and followed through on all the doctors' treatments and suggestions. I hope your next steps will actually help!

Barbara

Painful mx scarring? Scar revision?

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