A rad onc weighs in on radiation "burns"
Comments
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A note about speaking up when you have questions.
I made a super pest of myself, asking repeatedly, beginning a week before my boost, where the boost would be and how strong. Got a partial answer the Friday afternoon before treatment. Went ahead with Monday morn tx but was told I could see the RO the next morning. Threw them off sched. Long story short they showed me all the imagery & explained how they arrived at the tx area, but I am still certain they targeted the wrong spot. I believe they explained their science as completely as they could, but I believe the science failed them this time.
I gave up. I felt like I was a "problem patient" so I gave up. I wish it had occurred to me right away, when I went into the changing room and saw the area marked with ink on my skin, to ask them to confer with my surgeon. He could have told them they had it wrong. The ROs never saw me before my mx, never felt the tumor. I know it was in my breast, not my armpit. It was halfway between nipple and outer edge of the breast. The skin is thinnest where the tumor was close to it, that same area, where they should have directed the boost.
I feel sure that when I see my surgeon in July he will see the error. But then what? The damage is done. I feel defeated.
I am trying hard to remain positive. Overall, I feel fortunate to have all this treatment available to me. I will be fine, and if it turns out I need further treatment to that skin, I will get it elsewhere.
Moral of story: we have a right. Maybe an obligation. To feel confident about our treatment. If you feel worried or concerned, speak up. The other side of the coin: listen to and trust your drs. Unless they give you a specific reason to doubt them.
Thanks for listening.0 -
Hi MsW2012 - glad that you are feeling better and skin is improved:)))
Slowing peeling...keeping hydrocortisone & emul oil on skin. RO said comeback in 2 weeks...so 5/15 will be skin check...fingers&toes crossed. Just got RX for Tamoxifen going to wait ...MO said said take a break and begin 4 weeks after rads...I can do that.
(((Hugs)))
Cindy0 -
RMLulu - I don't see my RO for 6 weeks after last rad. Oh well, if I have a concern I know that I can phone them. My skin is so much better today - the redness is settling down. No peeling yet, but I am to expect that according to RO. So happy Cindy, that you have this behind you - your skin will be just fine. Thanks for all of your support and encouragement. Do take a 4 week break before starting Tamoxifem - you deserve a very good break. Take care.
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Good news Cindy. Glad your skin is looking good. Enjoy the break in treatment!
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MsW, hi,
I think it is very difficult to advocate for oneself when under the stress of active treatment, so I hope you won't be too hard on yourself.
Your advise about speaking up is good. Could you or does it make sense to call your surgeon now and advocate for him or her to consult with the rad onc to set things straight sooner rather than later?
I am a "problem patient" too, waiting for a call from my MO to say whether I need rads according to today's tumor board. He is taking off tomorrow so I asked his nurse to bug him to get back to me today or tomorrow so I don't have this hanging over my head this weekend.
I'll keep on him tomorrow even if it is his day off.
Hoping the best for you!
Hugs,
Peggy0 -
Hi Peggy
Yes, we must be our own best advocate! And it is so difficult under all the stress of treatment. I've been blessed to have an appointment buddy who cross checks my list of questions and concerns....and I try to clearly communicate how when what where data will be coming...and I'm fortunate all my BC team are in the same medical complex which is across the street from where I'm staying...so I can call or walk right into office.
So keep calling or go in...
Did you meet RO prior to your surgery? Just wondering...I met mine because I had questions.
Hope you have your answer today.
Just know that rads doable...you're probably already care for your skin now which is good.
Breathe, brave warrior!
Sending calming confident thoughts that you will have the answers you need and the strength to keep pressing onward (((hugs)))
Cindy0 -
Hi Peggy,
It's weird but I think many here would agree - on the one hand rads is nothing compared to chemo, but then again it another way it is more stressful. There is more unknown. It is even less an exact science than chemo - and the drs will tell you that. You don't feel anything, you don't see any direct result, there are no meds to alleviate symptoms like chemo.
Most people experience what feels and looks just like sunburned skin, even though it's entirely different. I had 28 days of treatment plus five days of electron-radiation boost for the skin, and my skin finally "broke down," as they put it, about a week after the last day of treatment. Even then, the skin looked much better less than 24 hours later, and never required any special teatment. Just use your moisturizers of choice generously a week or so before, during and after treatment to enhance healing.
About my question about the treatment area, I did send photos to my cancer surgeon. He said from one angle it looked like it "might" have hit the right spot but from the other photo he "couldn't be sure" without seeing me. I don't know how to shorten this story so here's how it turned out:
I phoned Tuesday morning to request the report the RO had promised me since before the boost treatment started, but I never got. It's called a skin rendering and it's an image of the body, like a sketch of the skin surface, with an outline of exactly where the beam is going to hit the skin. The receptionist asked if I wanted to come in and pick it up, or have her mail it to me. I was going in the next day for a nutrition class anyway, so I said if it was ready, I would pick it up then.
To my surprise, when I got there she said the doctor wanted to give it to me. So after the class, the RO came in and took me into her office. I was completely caught off guard, not expecting to see her that day. She handed me the printout, but told me she understood that I still had concerns and wanted to know if there was anything more she could do for me. Here was my chance!
I consciously put aside my respectful subservient attitude and addressed her like I would a close friend. I explained that not being a doctor, there was only so much I could grasp about how they came to determine the treatment area. I told her I trust that the physicist knows what he is doing, and that I trust that she and the other docs know what they're doing, but that I feel certain the science must have failed them. I repeated what I had been saying about how I couldn't see how any skin that had been adjacent to my tumor could have migrated directly under my arm! The tumor had been behind the nipple and extended to about 10:00 towards the breast surface to my right. The center of that surface area was about 2" away from the center of the well under my armpit, where they centered the boost treatment (which by the way was directed at skin-only). She repeated her spiel about how the implant is so differently placed than the original breast, and how the skin shifts during the mx/reconstruction. I then repeated what I had been saying: wherever the skin may have shifted, it would have shifted towards center, towards the incision, not outward towards my side.
But the argument that finally seemed to convince her was this one: There is a circular area of skin on my breast (foob!) now that is visibly thinner than the rest, just towards center from where the tumor used to be. That's when her eyes lit up. Yes, she said, she remembered me pointing that out early on during the initial treatment because it was swelling up more than the rest. That's when she finally acknowledged that the boost treatment may well have missed the mark. She said, "you would think that would correspond to the area where the tumor was closest to the skin during surgery." Yes!
I was not angry or disappointed. I already knew this. I told her that my impression was that radio-therapy is not an exact science, that in fact there was no guarantee I actually needed it at all, nor any guarantee that it got everything they were hoping. Same thing with chemotherapy. It is good science and in fact our best bet, but it is not perfect. Those beams don't behave like lasers and although we can be a lot more precise now than 20 years ago, it still isn't perfect.
She acknowledged that. She also offered,saying she didn't know if it would make me feel better or worse, that the initial 28 days of treatment did radiate the area in question, so it's not as if it didn't get treated at all. I told her actually, I hadn't thought about that, and in fact she was right - it did get treated, and I did feel better realizing that. So, even if the five days of boost radiation may have been wasted, at least I was still in very good shape.
I really feel ok about this. I am especially gratified that this doctor was willing to be straightforward with me, which is different from other experiences I've had during this cancer journey. Even though ideally, one of the RO's would have been able to figure this out from the start, at least once she realized there was something to what I was saying, she was willing to admit it. That doctor-patient trust is soooo crucial!
The lesson that comes out of it for both me and the doctors is: listen to your patient, even if you think they are way off in their comprehension of the process. But even more so, I think, as a patient, keep on trying until you get through to your doctor. If you have a concern, I really believe they want to address it, and correct anything that is amiss. Don't worry about inconveniencing anyone. You are paying them to help you. Think your question through as best you can and try to present it plainly and clearly, not throwing a bunch of concerns out there at once. Give the doctor the opportunity to answer, and try your best to be open-minded enough to consider what he or she is saying. But don't get exasperated and give up. Get the answers you feel you need. Listen to your instincts.
Oh, and to answer the other question, no, the RO's never saw me before my mastecomy surgery, so they never actuall saw or felt the tumor. Like I said, I still think they should have consulted with the surgeon, especially once I pointed out that the tumor was not in the area they were targeting. They just didn't think there was anything to what I was saying because all they could see was the science, which they derived from the PET and CT scans.
I want to put this out here too: I have decided to change course in my career, instead of pursuing freelance writing for the performance industry, I want to become a patient advocate. I have no idea where to begin, but I am starting by asking questions! I will do some research and talk to people until I find a good place to start. I have no medical background but I do have a college degree. I want to spend my time and energy doing something that will make a difference in other people's lives. The social worker at my cancer center was a great example: I had a problem with the administration at the hospital and he laid out for me, without emotion, what my options were and helped me weigh them. I want to do that for others!
Thanks Peggy and Cindy for caring. We are all in this together! We learn so much from each other - I sure have learned from everyone here. Love and hugs!
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Hi Ms2012, Haven't seen you in awhile..how is your skin healing? I finished a month ago, skin all good now. I am getting stinging and little jabs of pain in the rad breast. It sounds like you had a difficult time with the rads. Healing wishes to you. I also availed myself of the patient advocate at the hospital I use. He handled it and I had no further issue. I am sure if you want to pursue this as a job it is in the social worker field.
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Hi waiting- yes my skin is doing great. Almost done peeling and not itching or burning at all. Just a little tan on my back.
I am glad you were able to get help from the hospital's patient advocate. If it takes going back to school to become a social worker, that's what I'll do! I can't think of a better way to use what I have learned, not just in this cancer journey. Health care just keeps getting better, but more complicated too. We have so many choices, and so many things can go wrong, especially in coordinating care. I hope I can work equally with patients and providers to improve communication and ultimately patient outcome.
I am glad you healed well too! Isn't it amazing to be through with it? Yee haw!0 -
Hello everyone! “HAPPY MOTHER’S DAY” and for those who loss their mother “May God continue to bless you and your family with wonderful memories of the times you had together”.
As for me… I just returned from Boston last night and met with the plastic surgeon on May 8, 2013 regarding my reconstruction surgery when I receive my mastectomy on May 24, 2013. I am still very nervous as this was not an easy decision to make. I was given a choice to either go for another re incision with radiation (6-7.5weeks) or a mastectomy with no radiation. After thinking about it long a hard with my husband I chose the mastectomy with reconstruction.
I just want this cancer fight to end fast. I have been through so much since diagnosed last July 31/August 1, 2012. The cancer spread from my breast to my spine which has left me with a rod replacing half my spine.
We decided to go with the flap reconstruction (where they use my fat tissues from my belly and move it to the breast) then they will lift my left breast to try to match it with the new right breast. Not only am I going to have a scar on my back from my first of many surgeries but now on my belly but when I look back I will still be living and that is what’s more important in my book.
Once this surgery is completed I can now say “I am cancer free”! Those four words I long to say. I pray to God that this will be the end. I know my walk will never really be over as I now need to eat, exercise and make better healthy choices in hope there is no reoccurrence with this cancer or another other form of cancer.
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Happy Mother's Day! To all the moms and women of influence!
35_Smiling - will be holding you up in prayer. We will be in your pocket brave warrior. You've come so far and we want to cheer with you - I am cancer free!
Sending calming confident thoughts (((hugs)))
Cindy0 -
Cindy (RMlulu): Thank you so much for all your kind words! Yes I am all of us are "Brave Warriors"! I am looking forward to May 24 more then ever!
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Hey Smiling_35!
Tomorrows your big day:). We're in your pocket warrior!
Sending calm confident thoughts for a successful procedure and for speedy easy healing!
Wishing you a great day:)))
(((hugs)))
Cindy0 -
Hello Rmlulu thank you so much. i pretty much posted my results on other forums you and I share on so I am going to repost it here too. I hope you dont mind...
repost
I had my mastectomy with immediate reconstruction surgery (by using my belly fat to create my new right breast) was last week on Friday May 24, 2013. I was scheduled to be at Beth Israel Hospital by 9:30am. Got there on time and they gave me a buzzer and when it goes off that was time for prep. We (my hubby and I) sat in the waiting area until this thing buzzed...then I started crying and they told my husband they will let him in later.
They got me all ready for surgery and my husband was allowed to come in. We said some prayers and I made him do a before photo with all the marker markings made from the plastic surgeon. I was still very scared and nervous. The doctor came in again and spoke to my husband and answered all his last minute questions. I was glad for that. We kissed and I was wheeled into surgery which six hours later it turned out. I woke up and my husband was the first I saw. I was super happy and very scared to look under the covers now.
I have a follow up appointment with the plastic surgeon tomorrow so, I hope me and hubby are doing things okay. The drainage's are a bit discomforting to do but we get it done. I am still very sore but once things heal it would look better....I hope anyway. I find it hard to look at myself right now. its really not a pretty sight to see...I thought looking at other women will help me but seeing it first hand on my own body is just a shock for me.
I am super excited that my insurance paid 100% and I am doing good and coming along well.
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{{{35_SMILING}}} - Happy Dance...yippee you did great warrior!
Speedy healing and smiles...count your blessings...we're all in your pocket cheering!xoxo0 -
Bump- for all of us facing radiation soon. Interesting post.
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Hi Rad Warriors!
Great Post Topic!
RO speaks out on radiation burns...0 -
Hi 35Smiling! Congrats on coming through surgery. I know just what you mean about looking at your body. I still have my temporary (expander) implant and it's not pretty. In a bra I look ok though, so that is some comfort. My plastic surgeon keeps reminding me this is just temporary, and the nurses keep reminding me I am lucky to be alive and cancer free and they're all right - but that doesn't change the kind of mild distress of looking at myself this way.
It takes a whole lot of patience. For you, there will probably be a couple of months for the swelling to settle down. For me, I've been waiting almost a whole year so far, getting through chemo and radiation since my mastectomy last September. My medical onc and rad onc say they recommend waiting six months after rads before doing final reconstruction surgery but the plastic surgeon says four - I will see him next month and see if he still thinks my body will be ready for our tentative August 3 date. I hope so!
Hang in there! I'm right here with you. It's a long scary road but it has an end! Let us know how everything turns out, ok? Best wishes. You will be in my thoughts and prayers.
-ELizabeth
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Hi Elizabeth- that is great to hear that you might be going toward your exchange surgery soon. i did it backwards- exchange first then rads. My TE was a hoot- it felt like it was up around my neck! I hear you both on the distress of looking at the TE. Bras with pads on the other side definitely help, er...even things out.
It is good to have the implant now and no more TE. I hope you get there soon!
I am facing radiation now and it is scary, which is why I was re-reading this post and bumped it up for others.
Did you come through rads with your skin okay? I have heard a wide range of results.0 -
Hi sciencegal. Yes, I actually came through radiation extremely well, until the boost portion. I had no skin problems at all, but I did use the moisturizers 3-4 times a day faithfully. The Aquaphor is greasy like Vaseline but I glommed it on at night, wearing old t-shirts to bed. During the day I used aloe gel right after treatment and a strong Vitamin E cream (30,000 IU) during the day. I used cornstarch for deodorant and it worked surprisingly well.
My skin didn't like the boost. It broke down a few days after the last treatment. I also didn't understand why they were treating the area they did with the boost. If I had it to do over again I would have declined the boost portion of treatment. I still feel like the boost (last 5 days) treated the wrong area. But that's an issue that hopefully won't apply to you! Drink fluids and moisturize! Good luck. -Elizabeth
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Thanks for the tips! I am so sorry that happened to you.
They had not mentioned boosts to me yet. my tumor was so bg (9cm) it might not be possible. They just need to nuke the whole region i think!0 -
Hey Elizabeth
Now weeks out from rads, hope all is well and healing and looks like peaches and cream.
Fingers&Toes crossed for your exchange
(((Hugs)))
Cindy
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Thank you Cindy! My skin looks excellent except for the boost area. There it is tan, tough and taut - hey, 3T's! lol I have lots of faith in my plastic surgeon so I don't expect it to be a problem. That area is off to the side anyway.
I hope you are doing well too! I haven't followed every post here - let me know how you are doing. Kind of cool getting used to not having appointments every day, ha? -Elizabeth
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I am starting rads tomorrow, eek! I guess I am as prepared as I can be with lotions and potions and soft tees.
Thanks to all for the advice!0 -
Hey Sciencegal - you will rock rads! Stay hydrated...your skin will be fine and ak ask ask if you have any questions. Your rad team wants you to do well.
Sending calm confident thoughts!
Elizabeth - glad you are doing well...luv the 3Ts! Ha! Will be in your pocket for reconstruction...your PS will make you happy. A long journey brave warrior rest:)
(((Hugs)))
Cindy0 -
Thanks Cindy, I appreciate the good wishes you are sending my way!
I will take it one day at a time, as with everything else through this roller coaster ride.0 -
bump for the July rads girls
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Bumping up for Soteria.
GOOD LUCK!!!!!!!!!!!!!!!!!!!0 -
Hi Y'all
Hope everyone is doing well...skin behaving...all peaches and cream.
Anyone having 3mo or 6mo appointments? 1st mammo past tx! Just wondering how it goes...
Sciencegal - go laser tag warrior! Zip Zap take your sooo humm spirit into battle and a good sense of humor. Hydrate hydrate hydrate makes all the difference. Which protocol will you be receiving? Full moon over the ocean with cool summer breezes bring healing light:)
You so got this!
(((Hugs)))
Cindy0 -
starting tx next week.. had my first scan and dot tats...
my surgery was april 30th... and i am nervous waiting so long... but because of holidays etc...oh well whatever..
im just anxious to get the "end" of this journey started...
I know ppl say we are brave... and ya i agree...
i was terrified of chemo... still went...
i was petrified of surgery... still went..
I am, horrified by rad tx... my mom (who was a lot sicker then i am ), died, of a heart attack she had during her LAST rad tx....
but im still going...
Wounds...lessions... cuts, blood... i do very poorly with.
Remouving my bandage after surgery made me throw up...
but i will still go every day.. get up on the table and let them zap me..
yes i am brave.... but i'm also scared
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