why is no one talking about Radionecrosis of the breast?
As I have posted earlier, I finished my last of 33 treatments of radiation July 5,2016. July 18, went to my surgeons office because my breast was hot,red, swollen and an area looked funny. She withdrew a sample from the ares and she said it was pus, she opened it up and cleaned it out. Gave me some antibiotics and come back on Friday. Friday, she took me through the office into the hospital and had it set up to get 4 days of I.V. antibiotics,Rosephen. My wound went from a small hole, to 2 holes, the second one blew out over night, that was gross. I have death of soft tissue from radiation. I knew that could be sunburn type burns, skin flaking ever dry or wet sores, but no one ever told me about this. I go to a wound clinic 3x a week, for my wound to be cleaned debreeded (sp?) and re-packed because I wear a Wound vac 23 hours a day. On Friday, because my wound got all red and hot and hard again, there is talk of start treatments in a Hyperbaric Oxygen Chamber . I wish I would have know about this complication. There also is another type call Osteoradionecrosis.. it attacks your bones. I don't mean to offend anyone but this kind of complication should be shared The bottom picture is the first one and the top was taken Wednesday,and inside are 3 tunnels, 1 of them is 45 mm deep which is good , it was almost 70
Comments
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jdfly I hope you are feeling better soon! Thank you for sharing, I had no idea this could happen! Because of your post I will watching my skin extra close from now on. i am on 12 of 28 treatments. Thanks again!
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OMG! Never heard of this complication! I had 20 rads (the shortened version) in August 2016. Had some pinkish skin and that was that.
But this is unbelievable! Did you try and post this question on Johns Hopkins Ask the Expert site? You can google. It's a very thorough site that addresses lots of questions. They have a Radiation section.
Wish you the best!
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Oh my gosh, I am so sorry! I have talked to literally thousands of breast cancer patients and NEVER heard of this! I was SHOCKED
to see your pictures. How horrible. Thanks for making people aware of this. I know it rare, but still. I do know people who have gone
through Hyperbaric Oxygen Chamber as a result of reconstructive surgery and it helped all of them.
My sister and I both had 33 rounds of radiation. I had some very severe burns, my sister had practically no side effects. I am just so very sorry to actually see what you are enduring.
Sending my best.
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I found this link that talks about radionecrosis. I think it's not from US but it's informative and the publication date is 2015. Hope it helps.
Best wishes for speedy recovery.
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No wonder my BS and RO said no to draining my radiation-enlarged tumor-cavity seroma
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wow, I am sincerely sorry you are facing this reaction. I too have never heard of it and pray the treatments the doctors are providing are beneficial and will heal you properly. Wishing you quick and full healing.
Hugs
Bevin
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I am so sorry you are going through this! I had never heard of this term, so looked it up and it was described as Necrosis. It seems like I have heard that one before and that it was a possible complication... but I had never seen pictures.. so thank you for this. I do hope that the photos will be allowed to remain here. I feel that everybody should know what "can" happen. I'll be praying for you too, if that's all right with you!
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Good luck to you. I don't mean to scare anyone,but this can happen and no one told me about it, which they should have. With aggressive debreeding and flushing this last week and they put this gel substance into each hole that eats dead tissue, I may have avoided the chamber. I take 1 day at a time, and hope for a good day
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time for a cure thanks for the info. I will be checking that site out. Peace to you
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kittysister I also hope my pictures can stay up. I thought radiation was going to be a breeze and never gave it a second thought. Even though rare complications like this can and do happen, but no one talks or informs us about it. I am the unusual patient, my tumor was large and instead of 4 did 6 treatments of Taxotere and Cytoxin to shrink my tumor. It only shrunk 1 cm. My oncologist was Not happy. Had my breast saving surgery(lumpectomy) and sentinel node removed. Had to back in 2 weeks later to get clean margins,cuz the first time they didn' t. So he scrapped my chest wall,to get everything. That later produced intense bleeding,that after surgery he had to come back to the hospital because as the nurse said to him on the phone,"she's swelling as I'm looking at her". The put 50 pd sandbags on my breast to stop the swelling. but no surgery, because they had already fed me and gave me juice. My left breast swelled to the size of my head(cut the top of my head off at my eyebrows) and it turned black because of the blood. Radiation went ok. My last one was July 5,2016. Went on vacation with my husband and July 17 noticed a funny area the size of a dime. Went to surgeons office July 18 and this is all thats happened so far. Nothing in my treatment plan went the way t was supposed to
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I also checked the link out. In that person's case, the damage happened many years later. Hey jdfly, check out your private messages, up to the left.
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kittysister, yes, the damage happened yrs later, that's why it's scary, b/c many of us went through rads with no problems then this? Doc never told me of this, but did say the breast may get black. But not that I may get a hole in the breast. Granted it's rare, but when you are the rare one it's not rare anymore.
Blessings.
TimeForCure
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I met with my RO today. Most people do not have side effects from radiation, certainly not to this degree. Too much radiation, bad angle, bad body positioning and perhaps the chemo that you had done before were contributory factors. Complications do happen in everything medically related. As patients we have to understand and do our homework to find the best BS, RO, MO, that will provide the best care for us. Our doctors do not drain seromas, as this could be another factor of creating voids and openings in the breast.
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Looking back, I feel like I must have been in some sort of bubble at the time. I hadn't personally known or talked about anyone I known who had breast cancer. So I took the advise of my regular md who recommended a surgeon, who did breast surgery, but also other kinds of surgery. I know now I would have felt better about a surgeon who was a specialist in breast cancer. I did do a google search and saw that he was highly recommended, so really, that was all I had to go on. Live and learn. My oncology doctor (sorry, don't know the codes) was recommended by the surgeon and the radiologist by her. I guess we do the best we can at the time and are usually hurried or driven by fear at the most fearful time of our life. Best of luck to all.
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It is so hard to know what to do in initial diagnosis. Who can you trust, who would be the best for you, how much do you weigh in on decisions and at the same time be in shock! Howare you healing now?
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Ladies, as many of you just told, necrosis is a rare side effect of RT. However, to the one who suffers it is a big issue. Many ROs tell us about fibrosis of the skin but they do not (not even mine) talk about necrosis. There is a lady on another cancer site who suffered it because the tech applied an overdose instead of the planned dosage. Not even an excuse the tech offered her after sending the patient to hospital to deal with a new recon and radiation sickness syndrome which can be fatal.
Please just check and be empowered; even if you don't understand medical jargon, get into medical articles and sit with someone who knows, and discuss every single document. That is the best prevention. Remember that guidelines for RT in post-mastectomy women have changed. And also remember that you are entitled to say NO. The first RO who saw me told me that RO as well as MOs check continually on patients both for acute side effects and long-term effects (which can be fibrosis, necrosis, secondary cancers, etc). Some effects can be permanent. I will come back later. Have a nice Sunday.
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Jdfly, I am curious about what the RO is going to do. Who is cleaning your wounds? Do you have to pay also for a thing you didn't plan and that is a short-term consequence of RT? Is the PS seeing you? I really wish you get well soon. Please tell us how are things going for you. Thanks. You are very brave.
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I just read in another forum about the use of Pentoxifilne, Vit E and Hyperbaric Oxygen Treatment (HBOT) to treat necrosis induced by radiation. Let me if I can paste the links from the post. Talk to your MOs and/or ROs.
http://www.ncbi.nlm.nih.gov/pubmed/15169810
http://www.ncbi.nlm.nih.gov/pubmed/22846413
http://www.ncbi.nlm.nih.gov/pubmed/23845674
http://www.ncbi.nlm.nih.gov/pubmed/22139864
ASCO suvivorship guidelines. http://jco.ascopubs.org/content/early/2015/12/07/JCO.2015.64.3809.full
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Hi all sorry I havent been around but life has been busy.. Middle of July I was put on a wound vac and I was going to the wound clinic 3 x a week. I also was being seen in the surgeons office once a week. September 12, at the surgeons office the assistant said :Umm Kelly, you might want to look at this " Kelly shined a flashlight to light up my wound and she said " Ohhh its your Biozorb" What a surprise this was It was removed, it was still stitched in place. Lots of necrotic tissue behind the device,but everything was cleaned out, the 3 tunnels magically were gone. It started to finally heal. Complications now my skin is sensitive to the material used in the wound vac and I developed a horrible yeast infection on my breast. and the healing is sooooo slow. October 20 2016 went and had a vascular test to determine if my tissue has enough oxygen for wound healing. The test came back half good half bad, so Monday Im traveling an hour away to another wound clinic that has a hyperbaric facilities. I hope this works and I can get this healed. My oncologist cant do a mammogram to make sure no cancer is back. And I have to have a d&c done because I have a thickened uterine lining with polyps and my one doctors is concerned.
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Jdfly, Is good to know that you are recovering. Did you have implants? If so, did the PS removed them? I read about hyperbaric oxigenation treatments to treat fibrosis and necrosis of the breast. Thanks God you will get the tx. I wish you the best.
Bye, thanks for letting us know about you.
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So, do they think the Biozorb was causing or aggravating this condition?
Personally, I feel that my RO was the least forthcoming of all my BC doctors about side effects and problems related to treatment. He pretty much brushed off my concerns and questions.
I ended up with an infected and walled off (due to radiation) seroma that did need to be surgically opened up to drain, required a hospital stay for IV antibiotics, and because it was left open to heal from "the bottom up" I had a pretty big hole in my breast that had to be packed a couple of times a day for several months. The scar that remains is much, much deeper and more noticeable than my lumpectomy scar. PS I consulted said maybe he could fix it, but radiated tissue is "funny." Not, but I appreciated his honesty. Anyway, no one told me that could happen either!
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I'm so sorry for your condition. I used Aloe (from the plants I have) on my breast at least twice a day and had no problem for my 33 treatments. Just finished this past Wednesday I'm still using the Aloe. Hope others might try this option to keep the breast hydrated.
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Jdfly, Hoping the area continues to heal. So horrible what you have had to endure. I cannot even imagine what a horribly long road it's been.
Rmott, So Glad you did well. I know for most people this is the case, and I'm very glad aloe worked for you. I used aloe each day too, but still ended up with moist desquamation to a huge area and have had a lot of complications. Unfortunately, fresh aloe, aloe lotions, and all of the other salves and such don't work for some. It depends on things like radiation dose, number of treatments, area being treated, use of a bolus, how often they use the bolus, boosts, strength and number of boosts, prior chemo, etc..... I breezed through chemo but rads was a horror show. Everyone is different though.
I also agree that ROs do a horrible job of describing (and dealing with) risks and complications.
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jdfly, I really appreciate your coming back to let us know how you are doing. I have thought of you often. This is a complication that none of us would expect. And why would we, when we are told we could have something like a sunburn. In my opinion, some do ok with rads, some don't.
I was told to only use Radiaplex, a prescription cream. I still had two small open and oozing places on the underside of my breast, but nothing like I am seeing in your photos. I was told the rest of the redness would eventually turn into something like a suntan. This was two years ago. The skin is no longer red, but grayish, so I don't expect that to ever change.
Rmott, we take their professional opinion and advice and assume everything will go as they say. Sometimes it doesn't.
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Kitty, Rmott and Jdfly, I think we all trust our ROs. Otherwise, we won't let them put their hands on us. When I talked to my new RO last Monday, I asked her why they use full lifetime dosage. Just because it's standard protocol even when they know people react differently to chemo, to rad, even to pills. She said to me that some people who had chemo first reacts stronger to rad than those who don't have chemo. She told me that ROs don't mention those serious SE because these only show on 2-3% of patients. I told her then that even if in statistics, it is a 2 or 3%, for the patient is 0 or 100% so it should be alerted.
She said she would not lie to me and she didn't; I wouldn't let her either (radiation biology and health physics is my degree). I respect her for that. She wanted to give me 28 sessions of 1.8 Gy. I said I only accepted 40 Gy in 6 sessions because is also effective. She said she used standard procedures. I said to her that I didn't want her act like Don Quixote of La Mancha (The Impossible Dream) trying to kill giants when there were only windmills. In other words, I didn't want her to kill me 5 millions of normal cells trying to kill 5,000 cancer cells. OK, I will call her and tell her I won't be going. I made up my mind and I feel at peace. My MO will be watching me for any signs of malignancy so I will be on good hands.
The truth is that radiation can do a lot of harm and damage. I think ROs should evaluate their protocols. The guidelines for post mx patients changed and they don't care. The only way she could apply 50 Gy to me is when I have a recurrence with the tumor inside the body and I am working hard not to get it (arimidex, antioxidants, reduction of sugar, eating fruits, Vitamins, etc. My tumor marker lowered to normal values and I hope to lower it more in the next three months.
Good night, ladies. Sweet dreams. Time to sleep in order to be functional.
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Mariangel, just wanted to tell you I am glad you were so informed and are at peace with your decision. This isn't easy for any of us, that's for sure. Have a great day.
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Kitty, I left medical physics running away from cancer. When I was sent to the first RO, I was scared and I began the searching and the relearning. We all can do this. If something needs to be changed into plain words, I would have looked for someone to help me. I can't give anyone the power to hurt me willingly. One day a "killer" doctor saw me and I told him I was allergic to aspirin and cephalosporins and he just gave me what I told him not to. I was furious, aspirin makes me a temporary quadriplegic and cephalosporins give me kidney stones. Of course, I didn't by Counterflix" style="z-index: 2147483647;"> buy
the meds. I put the prescription in an envelope and placed it under the door of my kidney specialist's office. He made the fighting for me. I don't trust doctors until they prove me they are trustful.JO-5, I am sorry you have to endure so much. I was eager to have the genetic test's result because I needed to know if it was worthy to excise the other breast. I would have done the same if I have had a recurrence so quickly. Anyway, my BS removed the breast because my malignant tumor was inside a large benign tumor (a cyst about 6-7 inches perimeter) filled with many small benign tumors except the one and only. It was like many big round red grapes inside a bag. He did not let any of the other tumors become cancer. I'm glad he did.
The problem is that physicians do not say everything because 1) don't want to scare us, and 2) the probability is so small that the SE will never appear. However, they should tell us everything to keep us informed. I sometimes think it is lack of experience. The more they work on a field the more they see a wide variety of SE and reactions. That turn them wiser.
Are you completely healed of the necrosis? The recommended tx for necrosis and fibrosis is hyperbaric oxygenation. That is giving some positive results to people affected. by Counterflix" style="z-index: 2147483647;"> Thanks
God you are on a constant watch for malignancies. Can you have access to acupuncture? It might help you with pain management. I will pray for both you and Jdfly. My respect to you, ladies. You are very strong and brave.PD Note: 40 Gy divided into 16 sessions, not 6.
Maria
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JO, thank you for explaining what can happen. Even 1/2 of one percent could be a great many of us. Oh, I use ex virgin coconut oil after my shower, too. I found out if I didn't, the left side of my left breast gets "leathery". I found it to be the best, with no added ingredients.
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Hl, Jo and Kitty, why ex virgin coconut oil? What is the difference on terms of skin softness?
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I am glad I did mx and didn't need radiation. So sorry yours went that badly, bco member macb04 had a terrible result as well. Hope you heal soon.
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