Scar tissue from radiation 4.5 yrs after.

Hi Querkieluerkie, I had severe radiation fibrosis. Please read my posting about "DEEP Regret Radiation ". Please read the following link to a study about Pentoxifylline 400mg three times per day and Vitamin E 400IU, three times per day, taken orally for 2 to 3 years reverses radiation fibrosis. I use that orally, along with a compounded prescription cream, 5%Pentoxifylline and 1%Vitamin E in a cream base. I also got Hyperbaric Oxygen Therapy AND fat grafting. These things in combination reversed the thickened, blotchiness on my skin. I had a horrible tightness of my shoulder/arm/chest and back. Felt like an extremely tight , tight, tight, tight bra I could never take off. Is about 95% back to normal now. I can imagine if my breast, instead of uni mx, had been hit with rads, it would been shrunken. As it was I paid an awful price which they never told me could happen. http://m.jco.ascopubs.org/content/22/11/2207.full

http://www.ncbi.nlm.nih.gov/pubmed/22592699

Hi McCusker, I had the uni mx and still wound up being fried to within an inch of my life. I had open bleeding sores all over the left side if my chest. I was on narcotics for pain. They acted like, who cares? The RO I mean. No help from that quarter at all. The RO gave me a cream to prevent burns AFTER I was already burnt, way, way too late. I am sorry you are suffering through this now. I got intravenous Vitamin C from a Naturopath when I couldn't get the bleeding sores to heal. Intravenous Vitamin C has anticancer benefits, it produces hydrogen peroxide in tissues, which normal cells are fine with, but cancer cells are not. IV Vitamin C is a proxident, rather than a antioxident, but strangely enough can still increase collagen, increase Red Blood Cells and increase White Blood Cells. I had an awful problem of bleeding sores for about two weeks, finally went and got IV Vitamin C and that night the sores stopped bleeding and the wounds started to granulate. I am certain even oral Vitamin C would help somewhat., antioxidents are safe, look at the following study . People often under dose when taking oral Vitamin C. As it is a water soluble vitamin, it is impossible to overdose unless you have kidney failure or bowel obstruction. If you need Vitamin C, take as much as you can orally, between 3 to 10 grams per day, until you get loose stools, then decrease by a gram the next day. Maintain at that level for days to weeks, until as you get better you need less and less. Your body will always tell you when you are repleted of Vitamin C.

http://www.ncbi.nlm.nih.gov/pubmed/17283738

Good luck. It can get better, but be an advocate for yourselves, don't think the doctors will bring help to you. Remember that the squeaky wheel gets oiled. PM me if you want to talk.

Mods, thanks for acknowledging the concern. I'm not sure why, but because I didn't see anything in the recommended link (http://www.breastcancer.org/treatment/radiation ) that provides any guidance for the problem the OP posted about, I wanted to at least be sure QuerkieLurkie knows she is not alone and that she is in the company of others here who have that problem.

https://community.breastcancer.org/forum/70/topics/836229?page=5#post_4686864

There is lots of information for those who are recently diagnosed or currently undergoing radiation or who have recently completed it and need help with skin problems, and that leaves the impression that there really isn't much to worry about in terms of other problems.

I was diagnosed over 10 years ago, and there has been no tracking whatsoever of any other consequences I've had as a result of radiation, even though I was seen specifically for the problem you and I share, so I don't see how there would be much in the way of conscientious evaluation or assistance with it by the people who recommended radiation and provided it.

I keep thinking that perhaps some radiologist who is treated with radiation personally might eventually give it some serious thought, and provide more acknowledgement and advance discussion about it prior to providing treatment, instead of treating the topic so dismissively and casually.

Thanks for sharing the concern about it in behalf of everyone else.

A.A.

Hi Alaska Angel, I really like what you said about some radiologist experiencing it personally so that they give it some serious thought and acknowledgement and advance discussion. I couldn't agree more. I don't think our rights to full and complete INFORMED CONSENT were ever respected by the breast cancer industry and the oncology doctors who work for them directly, or indirectly. It is part of the unwritten rules that doctors pick up in their training, that it isn't necessary to completely inform patients of the true nature of their "treatments". Unfortunately, that paternalistic mentality is still alive and well in healthcare. I think that is why doctors who are ethical become disillusioned and depressed and medicine, as a profession, has such high rates of suicide.

Deborah, I hear you. I have to stretch my muscles that were radiated daily or they tighten right up. I saw a lymphedema specialist last because of pain under the arm and a sensation of tearing and she talked with me about the damage of radiation and the importance of stretching and massage to keep the tissue and muscle from tightening up but did say fibrosis can still happen. She also said I would probably shrink some more. At 63 I feel like you. I am 4 cup sizes different right now. I looked into breast augmentation and was told that the difference was not great enough yet. I want to cry when I look in the mirror after I shower. I did get a balancer last month so I at least still look somewhat normal in clothing. I have been dreading summer. No more close fitting clothes for me.

Right now I am just tired of Dr's and extremely busy at work. I would be happy with an reduction on my good side. All the tissue from the lumpectomy was from the top of my breast and he said I would need to that addressed and to have that done I would need to go to a cancer hospital were they deal with more difficult issues. I felt that there was another issue and that was I had a rare type of cancer and that seemed to bother him.

Since I fall into the group of people who are considered to be unlikely to recur early, more likely to recur late, it is significant that the radiation necrosis caused by the initial treatment is now so severe that I can no longer tolerate mammograms of the radiated breast because the hardened tissue will NOT compress and mammograms have become so painful. This fact is completely ignored by the entire "coordinated team" for cancer care.

For those who are contemplating the pros and cons:

The rads tech insists that I push the base of the hardened tissue up tight against the platform that the breast is resting upon, and then lowers the upper compression plate, which then pushes the upper soft portion of the breast down upon the nonflexible and very painful hardened lower breast tissue that will NOT bend satisfactorily enough to obtain a clear image of the area of the breast closest to the chest wall. As the patient I do my best because the rads tech is doing her best to be sure to get a "good enough" image. I wait while it is checked by the radiologist, and the tech returns again and again, trying to get clear enough imaging, and we try over and over. IT DOESN'T WORK.

My surgeon wants me to have both the mammogram and an MRI, alternating every 6 months, for very good reasons, since each imaging process only sees part of the total picture. But now that I am entering the period of greatest risk to me, my breast has been damaged enough that the information obtained by mammogram is mostly no longer available to use to detect a recurrence.

I don't even see that being discussed as being of any importance at all in any of what little evaluation and planning for those with radiation necrosis.

Thanks, Mcb04 for all the helpful info. I don't have access to the HBOT and my confidence level in care where I am is limited, but next time I am in the Lower 48 I will see what I can do with that. When it comes to imaging, it is like chemo -- hit or miss, with the vast majority of people never needing it in the first place. They might have more success if they seriously monitored, promptly followed up on, and targeted signs of inflammation.

A.A.

macb04, I was following the info about pentoxifylline in the early discussion about it long ago, but at that time what they achieved wasn't working all that well, and I more or less lost track of it. Thanks for providing more recent information for me about it. There is no one here who would have any background for it although providers here routinely point patients toward rads tx. But possibly one provider might be willing to consider access to it for me.

A.A.