A rad onc weighs in on radiation "burns"
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Thanks for the link rianne2580. I met with what seemed to be a very knowledgable RO for 3 hours and he had no tools in his arsenal for offsetting the risk to my heart for the possible RAD therapy for me following lumpectomy. I asked him for a pointer to someone who could do IORT so I could consider that. After talking to him I had pretty much ruled out RADS as not worth the risk in my case. I see that some other RO's are further along with safer treatment for left breast tumors. I am still looking for IORT options - this RO did not have any contacts. thanks again
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Well I ended up with Costochondritis (inflammation of the meat around the ribs), scared me to death, and without Dr. Susan Love's book, I would have had a nervous breakdown.
Doctor, you are one in a million, without this board, good and some not so good advice, I would have had NOTHING from my providers, they couldn't care less about me, and my cancer. So you can say what you want but I was treated terribly, given no advice, and without this board, could not have made it. Just a booklet, anything, would have helped. I did start a "buddy" system in our locale to pair "old timers" with those newly diagnosed. This has been tremendously helpful.
Don't think for one second you are typical, you are NOT.
Shirlann
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L2012.
Are you a candidate to ave rads in the prone position (laying on your stomach)? When done in thay position the radiation comes only from the sides and not above so there is almost no rad scattering to the heart, lungs and ribs.
Judy
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I had a partial mastectomy and excessive radiation 12 years ago. Because I said NO to chemo - I was blasted with more radiation. At one point I was bleeding through the pores of the irradiated area. I've lived in pain ever since. Last year I was diagnosed with cancer again in the same area and I had a full mastectomy. The mastectomy wound would not heal - it stayed open and got horribly infected and I ended up having to visit a specialist. Upon further investigation, turns out the radiation from 12 years ago had destroyed blood vessels and fractured two of my ribs. There was not enough blood flowing to the wounded area. Because of this I can't get reconstruction. I confronted my oncologist with this and he admitted it was the over-radiation and gave me a pathetic apology. So I live with rib pain every day and lympodema in the right arm. I've had 12 years to research and I'm convinced that the second cancer was caused by the radiation I received and no one will ever convince me otherwise.
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solsticegirl22
I'm to meet again with the RO on April 26 and am still in research/decision mode as to whether to go forward with RADS. In reading your experience, I find it interesting that her reasoning thus far to do rads is because her thoughts are that if I were to have a reoccurance, it would be at the original site. Yet her theory is bascially blown to hell in your case since it totally MAY have caused the re-occurance.
If you don't mind me asking, what was the rest of your pathology?
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In regard to the UCLA study that radiation causes cancer cells to become stem cancer cells: I had my independent consult with a female rad onc at UCLA and handed her that study. She said that although this is proven in a lab setting, once again, it is difficult to know what actually happens in a human body, so unless there are actual clinical trials with humans it is still unknown.
I also gave this to my new rad onc during our initial discussion. I posited that our cells are made to resist radiation which comes from the sun and space so it is logical that they would be resistant to radiation therapy. He agreed but said that our cells are also made to resist all damages from outside sources including chemotherapy. However, he said that it remains a fact that radiation kills off about 75% of cancer cells and chemo also. Then there are the anti hormonals to add to this. So the bottom line is that at this time these are the only and best tools we have to kill off the cancer cells.
After my mapping I met with the rad onc and he went over the details of the mapping. He showed me the "pictures" that are taken with the CT scan and where the organs lie and also the area that gets radiation. The pictures - fron view, side view, slice view - are in many colors to indicate the higher levels of radiation and then the lowest level so you can see whether or not any organs will be affected. My heart was far enough away from my chest wall so that it is out of the field of radiaion altogether and only a tiny top portion of the lung will get a very tiny amount;.
I believe that all of the things I am doing are for one reason only - to save and prolong my life. I hope to follow those who have gone before me and have beaten the beast.
I have now had four rads. 24 more to go. So far so good.
Kathy
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Chatsworth
I hear you, I really do. I guess my biggest issue is that I've had an MX vs a LX with no nodes. Just about to complete chemo this Friday (YAY!) then onto Herceptin for a year, Tamox, Aromisen. Anyway its not a no yet, still have to meet with the MO again. I may think differently after our meeting.
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Hi Everyone ~ I am currently 16 rads tx into a total of 36. I had an MX with recon (TE) immediately after. I did 18 weeks of TAC chemo and I, too, fell into the "gray" area for rads. My tumor was right at 5mm, which is the cut off for recommending rads, and I had .05mm margin to the chest wall. Although I had the mx and no nodes, my team strongly recommended rads. I battled back and forth in my own mind as I was deciding, but ultimately, I realized that if I ever had a recurrance, I didn't want to look back and wonder "what if?"
I have been very interested in the clarification given on radiation "burns" and all the skin issues. I use a bolus because my tumor was also very close to the skin, so after 16 tx, my skin is very red, a little painful, and beginning to itch. I use Emu Oil, Aquaphor and MiaDerm.
I worry constantly about my heart/lung involvement in rads as my cancer was on the left. I have seen my mapping photos, but I am worried because they could not effectively remove my heart from the rads field. The info on thyroid was very enlightening as well and I intend to ask my RO about it on Tuesday.
Thanks for sharing everyone!
SAN
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Oh, one more question ~ I have a weird feeling at the base of my throat. It almost feels like as if I swallowed something hard and it is bruised or like I have something stuck in there?? I know I don't, so I am guessing it is rads related. Has anyone else experienced this?
Thanks!
SAN
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Hi All
I just wanted to update you on my paricular RADS issue. I had my last chemo TX yesterday and as usual on Thursday had my blood work done and meeting with the MO to review. My regular MO was off so they had me see the SR. Mo at the hospital where I receive TX. I was exited to meet him because I have heard nothing but good things about him from other patients.
So we sit and chat for a bit while he review my file and comments that now all I have to come for TX wise is Herceptin and to pick up my Tamoxifen prescription and how I've done well with TX etc.
I said well I have to come in next week to meet again with the RO do again discuss RADS. He looked quite puzzled and read my file again. He then said, "who told you that you need RADS?". I said the RO did. He then said, "in all my years, you are not someone I would recommend RADS for at all!". I did tell him that during my initial meeting with her that I question this very matter and further I couldn't see where it was indicated either. I also told him that she was to review with the tumor board as well. He told me he is on that board but of course I know there's no way he would actually remember my file since I'm not his patient. He wanted to know what my regular MO thought about it too. I just said initially he never mentioned RADS but I did bring it up each visit and how he just seemed to say lets deal with one TX at a time and worry about this when we need to. Mabey he was being politically correct and letting the RO do her thing. At the end of the day she may tell me I don't need to do it afterall.
He made me laugh when he said "I don't do politically correct!". LOL. Anyway, it looks like its off the table for me, very relieved.
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Sandy i have weird feeling at top of throat. My RO said its not rads. I think the chemi is still turning over cells IDK. And my site were port removed, neck still feels eeird. Think i just need to get over tx and heal
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MLB gotta luv a MO with a sense of humor!
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MLB, that is awesome!!!! Yay!!!
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MLB ~ So happy for you!
Fran ~ After I posted that I asked my tech about it. He said he thought it was residual SE's from chemo. Just seems weird that it would pop up 6 weeks post chemo and 10 days into rads. Frankly, my whole body is all weird and I don't know whats from what these days. I also have a weird feeling in my neck where my port catheter went into my jugular :-\
SAN
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Rad TX - completed 33 treatments March 9. Used MiaDerm early in treatment and switched to Aquaphor when skin needed more soothing. RO and surgeon very pleased with skin condition (as am I).
Thyroid - my thyroid bottomed out. Have been hypothyroid on same medication dose for eight years, very stable. Towards end of radiation started with being cold and then somewhat depressed - no interest in doing much but had good energy. Asked family doc to check thyroid and it came back 0.008. I think it's radiation related. Had radiation to suproclavicular the included some area of the right side neck.
Unexpected SE but start new med dose tomorrow so hopefully TSH will return to normal level.
Sort of need to laugh. If it's not one thing it's another. Don't see the RO until July - all should be well by then for sure.
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Hi, I'm new to breastcancer.org. I don't really know why I had not stumbled upon this. I view theboobytrap.com regularly and an article about 3D nipple tatooing let me to this site.
I did chemo, bmx with immediate TE placement, 33 rads and then Arimidex. My PS filled the TE as fast as he could because it all had to stop during the rad. He would not resume fills/reconstruction until I was a year out from my last rad. My rad began in Jan 2011, I was one of those who's skin totally dissolved away by day 21. I had two WONDERFUL RO, who were supportive, compassionate and gentle. When my skin began to tear then melt away they gave me narcotic pain meds to help cope. We slathered silvadene cream on telfax pads to lay over the open skin and my bra days were over. They actually changed their rad. plan to give my skin a chance to recover, they did the bolus boost which was way shorter. Then they moved to a deep muscle layer rad which caused less damage. The last week then the went back to the skin to concentrate on the incision line. I am so grateful I never had issues with infection or some of the issues I have read about.
I still plan to procede with the TE for implant exhange, but around Feb began to notice that the rad. side had areas of stiff, STUCK skin. In addition the TE seemed to be climbing up my neck getting tighter and higher. I'm light skinned, so the whole axillary is a deep red, nearly purple. But my arm pits haven't seen daylight in at least 15 years so the discoloration doesn't bother me. The axillary swelling does. I requested a PT appointment. My PT is a breast ca recovery/lymphedema specialist. She took one look at me, and told me I had fibrosis in that area that was stuck. She explained that the rad. can affect the skin's ability to heal, grow blood vessels for up to a year after rads, and that was why my PS refused to do surguries until that year was up. She did deep tissue massage and taught me to massage at home. She had my buy a big body ball and lay across the top of it in a kind of crucifixion position. (Which I don't recommend doing in front of your spouse as the position was WAY too interesting to him.) I was stunned by the stretch this did. But I kept doing it. She also did myofacial release, and over 6 weeks, my TE moved to the front were is used to be, and dropped. The area around my shoulder where the Pectoralis muscle attaches was so tight it was like a cord. It kind of hurt to have her doing the DTM and MFR but after chemo, surgery and rad? What's a little hurt to stop me? In addition, I bought what is called a swell spot from www.lyphmedemaproducts.com to wear in a bra over the rad side. It channels fluid from under my arm and across the puckett. It GREATLY reduced the residual swelling I have had since the tx. She also recommended that I buy something similar to dryer ball, the kind with nubs. Trust me, you do NOT want to google bumpy balls! Target carries what are called "Sensory balls" in the baby section that have nubs of different heights and widths for around $45. I bought what is a galaxy ball from the obnoxious toy department...that area that has whistles, light sticks, and various other stuff your kids bug you about when they see them. It cost $2.99 and any time I sit to watch a movie or tv, I am to roll that over all the rad. area...under the arm toward the front. She said this will help reduce adhesions and fibrosis. It's not a guarentee.
I actually waited 14 months to go back to the PS (my son was getting married and didn't want any hassles that would interfere with the wedding.) When I unveiled my pucketts (named after the Dr who placed them) he exclaimed that I had done a marvelous job rehabbing the muscle and the skin for further reconstruction. YAY us! So he gave me a 60 cc fill right there and I have had another one since. The non radiated side acts like "bring it on". But I admit the radiated side gives me more discomfort. After the second fill (brought me 600cc) I had severe muscle spasms. But within 24 hours it was under control.
I didn't know whether to post here or in the TE forum. But reading what those poor ladies went through...ugh...I felt maybe this was a better place as my question deals with the rad effect and not really the TE. I am wondering if there is anyone here who has completed reconstruction after radiation and was there any issues that popped up because of the rad? Did your radiated TE get to the point that it refused to expand further? After the exchange, how did your implant do on the radiated side? Did it behave or move around your chest and seize up into a hard lump? Is there something more I need to do to keep preparing this rad side for implants? Any advice is appreciated. Goodness this was long in the preview! Sorry to be so long winded. The PT did tell me to increase my intake of Vit E, so I did that.
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I had a nasty reaction to rads. In the UK we have dressings nurses attached to the radiotherapy dept. As soon as my skin started to go pink she used hydra gel which came in tubes, and secured a dressing over the top. I was warned that I would still 'cook' for a week after treatment had finished and the wound would get worse. It did 8-(. But, then it healed really quickly. It was needing dressings for only 3 days after the cooking period and two days later completely healed. That was in February. It now looks like an odd square of sunburn lol
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I completed the required 28 rads on Thursday. The biggest area of burn is on my chest. The superclav and underarm not much. I was told it would look worse for a few days but would heal quite rapidly.
The rad place gave me a Certificate of Completion. I thought it was pretty funny sort of like a graduation certificate. Signed by everyone.
I never did get tired throughout the process. Slept pretty well.
Now on to Armimdex in about four weeks. I had my blood taken to check white cells halfway through the rads and asked that my med onc also check my hormone levels. It came back as being under 12. This is approx. where pre-pubescent children are. So there is not a whole lot of circulating estrogen.
Wondering how much blockage is needed for so little estrogen.
Kathy
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I have Hashimoto's Thyroiditis and recently had it checked after my last chemo. My TSH is usually 1.0 - 1.5 on synthroid. After chemo it jumped to 6.0! Geez ... no wonder I can barely crawl out of bed!
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I really appreciate understanding more about the burning..missing skin. It worried me a lot 2 years ago.
I am a very fair skinned red-head and I was very worried about an extreme reaction to radiation.I sunburn badly! I had a bilateral rad treatment for 38 days, with boost at the end-2 years ago. I took care of my skin from the start, see below. Results-very bright red, no peeling, some itching, very sore but managed with Tramadol and Advil. Major fatigue, and general soreness for many months after. 4 months after my energy came back in one day!, Soreness and achy muscles continued. Started physical therapy to get range of motion back-it worked to a degree. BEST!!! Improvement after I started regular pool exercises in the heated therapy pool at the gym, using buoyant dumbells and stretching the arms, slowly.
I continue with the pool a few times a week to maintain range of motion and prevent creeping soreness. I've had a some hardening under the left breast but generally my breasts are softer and less lumpy( fibrocystic) than before treatment; even, my onc made a note of the positive change. The hardening has changed and softened a bit, less sore too, since I had a professional massage therapist work my whole body and then my breast areas... amazing difference. I'll now continue massage every 6 wks.
I took care of my skin from the start: slatthered on the RX cream given at the clinic right after treatment each day, covered both breasts with a few ex lg non-stick telfa pads to keep the cream from getting on my clothes, tucked in a few cooling Busom Buddies, ( another friend, going through treatment, and I made, 3" flannel squares, filled with flax seed and lavender-cooled in freezer-we now donate these to our cancer ward)
I would re-cream myself about 4-5 x a day, each day; as needed to soothe the burning soreness. It would always soothe and feel better right after new lotion, and a few newly cooled Busom Buddies tucked into my sports bra, or tight cami to hold it all together.
innovative and crazy...but I found I could use the Barely There bras, inside out, to prevent the seams from digging in and then backward, to have a lower cut under my arms to prevent sore rubs on my lymph node surgery. Any low under arm cutting sport bra worked. PS YOU CAN PULL UP YOUR BRA OR CAMI FROM YOUR FEET to prevent bumping the sore breasts.
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There is another option available and it's called IORT or intaoperative radiation therapy. Your entire course of Radiation therapy is delivered at the same time as your lumpectomy and it is focused on the tumor site-in approximately 10 min!!! IORT significantly reduces damage to surrounding tissues because the radiation is focused. Unfortunately at the time of my Mom's DX, IORT was not an option and she suffered from radiation burns. My friend however, saw Dr. Joshua Ellenhorn in Los Angeles, who uses IORT during a specialized surgery to avoid damage to the skin overlying the breast or healthy breast tissue. My friend was very happy with her results and the fact she did not have to endure the side effect of a typical radiation course. btw with IORT, the RO does not have to leave the room.
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I am down to my last 7 treatments. I have a lovely pink square on my chest that itches like crazy. I have gotten much more relief from plain, plure aloe vera than I have from the Rx cream. I use my lotions religiously as recommended but I have sensitive skin, so maybe that's why I've reddened so much. I hope this last week doesn't aggravate things too much more. As I said the skin is sore and itchy, but all in all, the treatments have not been that bad.
The original post is pretty much what I have been told and what I have experienced. I guess I got a good Doc and cancer care staff. :-)
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I don't know about all treatment centers but mine limits the IORT option to those 60 and over. The only possiblity of that option is by participating in a clinical study. You would be randomly put in a group that receives the current standard treatment, a higher dose - shorter term radiation schedule, or the IORT.
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Hello Spinnerpom!
Thank you for taking the time to explain radiation's effect on the skin. That was very thoughtful.
Tomorrow I begin radiation therapy on my neck and the right side of my head at Columbia Presbyterian. It looks like my disease has traveled to my neck lymph nodes and is wreacking havoc there. My radio-onco team is made up of wonderful and very communicative women, and I'm feeling quite comfortable with the whole process. Despite that, however, I want to find as much credible information as I can about this treatment. I was thinking, perhaps someone in these boards has undergone a treatment similar to mine.
I have a question that may get answered tomorrow, but thought to ask it here also for the benefit of all. I have just started taking Tykerb. (On my third day today and thankfully no side effects so far). Tomorrow I begin radiation. Every August I look after a lovely little kitty in my house. I was wondering, given that I'll be undergoing radiation for the next five weeks, if either the radiation or the Tykerb will affect the sweet little kitty. He's about 10 years old. He lovest to cuddle and hangs out with me when here. Also, I have young nieces (9 and 7), who visit on weekends. How does Tykerb chemo and daily radiation therapy for 5 weeks affect children and pets around the patient?
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I don't know if the radiation you will receive is any different than what is given for breast CA, but I asked my RO about safety and my newborn grandchidren (twins!) and was told that the radiation does not linger. That once it's given and the machine is turned off it's done. There is no residual effect and I could hold my new grand babies without worry. It is my understanding that you only have residual efffects if it is given internally. I don't know if this is what you are looking for but I thought I'd throw in my two cents. Good luck with your treatments!
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Thank you so much for that reply Mini1. That's what my rad-onco doc said today. Once I'm done receiving the radiotherapy session, it does not linger, so no one around is affected once the session ends.
So, that's good news.
Today, first radio-onco session. I walked in with some lingering pain (2-3 in the scale of 1-10) and interesting enough I walked out with no pain. Within the hour though, I began to feel a stinging sensation in one of the areas that received lots of radiation. Not sure what that was.
The session though, I'd say looong. It lasted about 20 min, but it certainly was not a quick in and out. I could hear the whirring of whatever machinery around my head, but since my head was being held down by a plastic mask, my eyes were shut and I couldn't see a thing. Perhaps it was better that way. The mask was tight. It's supposed to be that way so you don't move. I tried to keep calm & not panic. Went to a happy mental place, swimming with fish in the Caribbean wearing my snorkel gear. Same tight mask feeling. It helped.
The good news is that this first session killed the lingering pain that had begun to subside with Tykerb.
I forgot to mention I'm getting acupuncture three times a week, I hope this helps me with the side effects. So far none. Of course this is the first week.
Will keep updating here. Thank you for your feedback.0 -
Metro - your stinging could be from the nerve endings being irritated from the radiation. I had that off and on during treatment. On the plus side, they seemed to lessen as the treatments went on, so maybe they get used to it. You obviously are having a different type of radiation than I did. I don't know how well I would do with a mask. 20 minutes is a long time to lie there. Are you able to listen to a book or music during treatments? That might make the time go faster if you can. Glad you can do accupuncture. I wanted to, but it was on my no-no list for lymphadema. :-( I'm glad too that your pain has eased up. We have to take the silver lining where we can find it. :-)
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Thanks Mini1 for your feedback.
Two weeks into the treatment and I never thought I'd say this but radiation is a great weapon! The results are astounding. I've gone from a painfully swollen neck to a painless, much less swollen neck. I can actually turn my head without pain.
Of course there are some minor side effects but I'm told they are temporary. Dry mouth is one, for example. Salivary glands get shut down when the neck's radiated. Thankfully it's reversible once the sessions end. However, it is paramount to keep the mouth & teeth moist at all times, especially during sleep or else cavities set in rather quickly. Biotene left sample packets in my oncologist's office. They make this wonderful moisturizing gel for dry mouth, which does the job. I highly advise it should anyone have to do this. My dentist also gave me a script for a fluoride paste, which I've started using 2x per day in addition to regular toothbrushing with the Biotene fluoride paste.
With radiation to the neck, come the mouth sores, so, Magic Wash to the rescue. It has lidocaine, so it helps do away with the pain when it gets unbearable. Two weeks into the treatment and with mouth sores I can only down liquids or puréed food. I've started using the blender more often. Plus with Tykerb on tow, my mouth has lost the taste for many fave foods. So, drinking lots of nutritious shakes right now. I think I'm finally going to shed all those unwanted pounds.
As far as skin burns, my brilliant onco-radiologist recommended I apply Calendula lotion daily on the radiated area, and alternate with the cream they gave me. So far no burns. Then again, I'm only halfway through my 25-session treatment.
Regarding the radiation fatigue, coming home after the daily sessions all I want to do is lay down & nap, but once the nap is over I wake up energized again. I'm thinking about getting back on my treadmill & walking for an hour again before the treatments. I hear it'd be beneficial.
I'll keep posting any other updates here to worth sharing.
Gotten used to the radiation sessions by now. The mask is not painfully tight anymore, and now that I know what the whirring is about, I can actually keep track of its movements around me, as it targets different spots in the neck. No longer a stressful situation.
Again, I cannot say it enough. Aside from the minor & temporary side effects, I have become a believer of radiation as a weapon in our war. I'm getting my face and neck back, and hopefully soon I'll look normal again and be able to lead my normal life.
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Metro - so glad everything is going well for you. Isn't nice when you get the energy to do some of the things you had to stop doing? I never thought I'd miss exercising, but I did. You never think about certain things until you can't do them. Who thinks about having a dry mouth at night? Or being able to taste things. We just take it for granted. I still tell people you don't know how much work breathing is until you can't do it (I had lung surgery). You never think about it, except maybe if you have a cold. But when you have to conciously think about each breath in and out, you think about it and realize that the body is an amazing machine.
Anyway, you're making progress and that's what's important. Hopefully, before long you will be giving out sage advice to people in your shoes.
HAPPY THURSDAY!
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Hi Mini!
Thanks for your very encouraging words. I'm sorry to hear about your lung issues. I cannot imagine that. Good for you that you overcame that.
Gotta tell you, the radiation is beginning to take its toll, and I still have a week and a half to go. My quality of life is suffering, but I keep telling myself this is only temporary.
I just wanted to stop in, say hello and thank you. I'll check back in for updates and final update on results of the radiation treatment. My neck is a little burned and I have a rash. Hard to swallow & losing my voice. Looking forward to September!!
Have a great weekend!
M0
