A rad onc weighs in on radiation "burns"
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RMlulu, Thank you for your gentleness. Dr.E was everything I've heard about and more. I could not have asked for a kinder, gentler Oncologist. It was almost surreal sitting in that chair, not standing next to it as the nurse. I had a hard time at first following simple directions, mostly regarding the paperwork I had to fill out. Just so strange to be sitting in THAT chair! IT gave me so much more insight into what my own patients must initially go through. But he very compassionately answered all of my questions and gave me so much more information on DCIS. He also confirmed for me what my was belief anyway, that DCIS is indeed early stage, pre-invasive breast cancer, not, in his mind anyway, simply "precancerous changes." And that not all DCIS cells transform into IDC, but that all IDC starts with DCIS! He also gave me a referral to an oncology social worker to see if it would help me emotionally. We will meet again after my radiation treatments are complete to further discuss anti-hormonal treatment.
I meet my RO tomorrow. Here is what a lot of my anxiety is about. What I've feared the most. But she also comes highly recommended and regarded, including by my patients. I have lots of questions for her.
I have had this terrible anxiety almost all weekend. Mostly about work. I feel so overwhelmed by everything, drained really, and not very confident I can, at this moment do my job, which is the delivery of professional, compassionate, safe care for my oncology patients! I asked for a meeting with my boss tomorrow morning, after I meet my RO. I don't really know what to say, how to be honest without risking my own livelihood. I'm 62, not quite old enough to retire, and draw from my pension. But I need some time to recover emotionally. I think I went back to work too soon last week. To ask now for more time off will be difficult. We are so short staffed right now already. It's been only 10 days since surgery and my breast is still very tender. But it's the emotional recovery from months and months of tests, biopsies, swelling, hematomas, waiting, healing, then more biopsies. And waiting and waiting. Not knowing what I'd wake up to after surgery, I feel I've drained my resources of strength, resilience and self confidence. This isn't all about breast cancer. We are first women, with our lives in various stages of development. We already bring so much to the table. This C-word is an uninvited guest who barges in and tries to sap our strength and fortitude. Which of course affects our lives, families, careers, and other aspects of our health.
I think I've gone on and on and on enough for tonight.
Thanks for your support.
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(((leenso52))) Breathe, you will got this...be kind...journal your thoughts...see the Onc social worker ask about options for more time off...part time...ease back...but don't be hard on yourself...check out services like mediation, exercise, support, nutrional help, use all services...and PT for arm...
Pray your RO appointment goes well. Ask ask ask...make sure your concerns are addressed...ask to see the film and where rads are to impact, what skin care product and samples, rads is a slow daily grind, doesn't hurt, takes more time to undress and hop on table than the 20-30 sec zaps over the fields...and there's time between each beam of healing light..,but I will confess on the 1st day after setup, door closed. And I was waiting as the machine moved into position...i felt a tear run down my cheek...and I heard myself say I want my mommy...yes, we all have our moments.,.i dislike sitting in the chemo room for my Zometa infusion... Had no problem sitting with my gf during hers, but it's harder on the other side.
Breathe, in your picket!
(((Hugs)))
Cindy
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RMlulu,Ah yes, breathe...I wish I could just breathe normally but anxiety continues and my NP has started me on low dose buspar and no change yet. My RO was so concerned about my anxiety she wrote a note for me to stay out of work all this week. I'd hoped to go back Monday but my Boss, and hospital want me to take next week off as well, and maybe even a medical leave thru radiation. This is not at all what I had planned. This is all preventative, after surgery for DCIS. So what is happening to me? My boss thinks it might be too "close" taking care of oncology patients while going thru treatment myself. I have anxiety and treated depression at baseline. And A.D.D. My boss knows all this and more because we are close. She thinks this diagnosis AND especially treatment are more than enough to focus on, and not feel heightened anxiety at work. After some consideration I have decided to take more time off.
All I want is to be able to put this all behind me. I am almost 63. I had no intention of retiring any time soon. I live alone, which of course doesn't make anything easier. I've always wanted the week of Christmas off! Once again, not in this unexpected way.
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Friend, Your career as a nurse means nothing compared to your health. He is your MD. Everything else is 2nd, 3rd 4th...
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leenso52 - Breathe! You will get through this...just be kind to yourself...so many emotions...and yes, working in the chemo room would heighten your senses. Remember each c is different you are not your worst patient...clam your head, walk, exercise, dance, tai chi, mediate, try and focus on today! Don't get ahead of yourself, don't run a race you don't need to run...it will be ok.
Enjoy your time off, plan something special to look forward to and invite family&friends. Count your blessings.
Breath! Give yourself time...don't rush into retirement, can you transfer to another department at hospital, but first heal...talk with a therapist..and go easy.
In the beginning time moves slow and it seems like eternity, but than slowly the days come and weeks and months and even years...
Again, enjoy your Christmas vacation...sending calm confident healing thoughts&prayers!
(((Hugs)))
Cindy
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RaiderGirl - yes!
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Hi All and Merry Almost Christmas,
I actually feel much better emotionally this week. Am fighting a nasty respiratory infection, but anxiety is really under much better control. I've talked with the hospital and my therapist and I am pursuing returning to work next Tuesday. I've had lots of time to think and relax and be kind to myself. I'll be spending Christmas with my kids and grandkids and will return home either late on 25th or 26th. I'm going to a play that evening. And some dog walking meetups this weekend. I know in my heart it is time to go back to talking care of patients. Even oncology patients. EsPEcially oncology patients. I'm planning to balance my days better with adding yoga and/or meditation back into my life. Get back to 4-5x/wk exercising before work, eating healthy, and pursuing my favorite hobbies like photography and hiking.
And I will especially plan on dropping in to this site more often to help, seek help, and engage with my new found bosom buddies! No offense intended.
Of course, all bets are off once I'm in the middle of radiation, which will start mid January.
Happy Holidays!
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I am waiting to find out if I need chemo before starting radiation but have already had a consult with my radiation oncologist - he also was very compassionate and caring. Taking the time to explain to me the side effects I might face - including the sores that I might expect and what causes them. He also recommended a number of things that I could use to soothe the effects of the radiation treatment should I develop them. All are over the counter and I was able to find them online at Amazon at a very reasonable price. His recommendations were for applying fresh Aloe - I have some growing in my back yard so all set there. Calendula ointment by Boiron (there are others but I read up on this and liked the other ingredients that are all known for their soothing properties) - $23.00 for 3 1.5 oz tubes. The one he highly recommended but did say was pricey (about $30 for a 1.5oz tube) is called Medihoney - I chose to get the gel form as it seems to absorb better. Medihoney is made from the Manuka flower that is only found in New Zealand it has been found to be beneficial for many medical uses and has anti-bacterial properties. I have all three sitting here waiting should I need to use them. Should I end up with multiple ulcerations I will see which works best and post back my findings and hopefully help others looking at the same thing somewhere down the line. All the information from all of you courageous women has been very helpful as I am approaching this treatment very soon myself.
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NCJ63 - congrats on moving forward in tx. Fingers&toes crossed you can skip past chemoland...rads is mental...showing up each day and jumping up on the table.
Hydration is key! Drink up, moisturize, and free boobing:). I used hydrocortisone&emu oil and did not have any skin issues on my fair skin...RO was surprised and now recommends emu oil...gives free samples too! Also a cami that you can slip the girl out to the air and not let clothing rub against her...feels so much better.
Your skin will do what your skin will do..show&tell is best...Monday&Friday...make sure RN or RO look and ask anytime you are concern about your skin...you got this laser tag warrior!
(((Hugs)))
Cindy
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Really? You didn't have any fatigue at all? White cell count did not go down either?
By treatment 17 of 35 I began to get tired. Then I stayed tired.
It wasn't horrid , no pain, I did not feel sick but it was the strangest fatigue ever.
I still went to work every day and did ok.
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I cannot imagine not wearing a bra for 6.5 weeks. I'm not large but I feel very unsupported without one. I wish there were a 1/2 bra for times like this...
By the way, RaiderGirl - I really, really like your tag line. I may borrow it. How long did it take you to recover your energy after RT fatigue?
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Hi leenso, Elizabeth here. It's easy to get frustrated during treatment and even during the long recovery process. We want so badly to be strong, and get back to normal as much and as soon as possible. Maybe being an onco RN you feel even more pressure to be the model patient. There's no immediate solution by I absolutely agree with rmlulu: find time to be kind to yourself. Love yourself, nurture yourself. We're all like little girls when it comes to facing the hard realities of our diagnosis and treatment. It's no fair, it's no fun and we don't like doing it! I hope you have some counseling available to you where you're at. I attended a general cancer support group that was like a lifeline for me during and after chemo and surgery. This site too! Best wishes to you. Don't be hard on yourself. We're here for you. You will get better. Everything will get better. It just takes a darn long time.0
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Thanks Cindy - I will add the emu oil to my pre RT regimen. Found out yesterday I will not require chemo, and my oncotype dx came back with a score of 11 for recurrence with treatment which my oncologist was very glad to be able to tell me, so on to RT for me. Thank you all for such great feedback and information about this treatment. I am so thankful my employer has been great in working with me on my schedule so far. I suspect once I start RT it is going to impact my work a little more just due to the nearest facility being 45 minutes away and the opposite direction from where I work.
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I missed one day from work the entire 35 treatments. Of course the facility was 15 minutes from home and work,There is a recliner in the conference room and I would take a bit of a rest if needed.
If you read the very first post by the Radiation Oncologist you would see that nothing will "prevent" damage because skin is not burned during rads its actually like missing skin as the regeneration process is disrupted. Use Emu Oil if you like how it feels but if you believe the Rad Onc, dont spend big bucks on anything.
Good luck I hope all goes smooth for you.
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Started radiation today and I know this sounds crazy but for about an hour after my treatment I swear I could feel some kind of deep tickling sensation deep in the breast. I had no redness from the first treatment, and overall not a bad experience for the first time. Anybody else have that weird tickling sensation after starting radiation. I am getting 267 rads each dose, not sure if that has anything to do with it.
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NJC63 - congrats on day 1 done! Yippee! Did not have any tickling sensations...so ask your techs. Make it fun..I did a countdown and weekly prize...incentive to show up. Hydrocortisone&emu...my skin had tiny itchy bumps day 14-15. Always ask show and dance as you jump off the table...healing light.
Your going to do great laser tag warrior
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Thanks so much for the advice, I will definitely mention the feeling to my tech's tomorrow when I go back for round 2. Thank you for the supporting words. Since being diagnosed I have felt like I was on a roller coaster, both emotionally and physically.
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Hang in there on the drive in sunny socal! Free boobing really helps..air the girl..really show&tell Mondays&Fridays and breathe!
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Hi everyone,
I am new to this site, and new to this diagnosis. Well new since November 2014. Went through the range of emotions. When I was waiting to hear the diagnosis was the worst, then waiting to hear about chemo. Luckily no chemo, and I am through the biopsy, the lumpectomy, and just finished radiation last week. I think the biopsy was the worst. Really no information about how painful it would be and really limited instruction from the surgeon. Thank goodness for the nurses. Right now, I am so itchy and sore from radiation, and at night it feels like my breast and sternum are caving in. My nipple is feeling the brunt of this. I still have nerve pain in the back of my arm and under my arm where they took the lymph node. Only one thank goodness. Haven't worn a bra since the surgery. I have a small build and can't really find comfortable cami-bras in my size. Just tough to wear clothing. I am cold in winter and can't wear any of my heavy sweaters that usually get me through winter.
Great support from my friends, and from the best fiancée. Reading all your thoughts and experiences helps me to not feel so crazy. It still feels so surreal. I am lucky that it was caught early, I know, but it is a lot to deal with. No family history, and I have never had surgery or a major illness. Then this. Trying to stay positive and thankful and focused on my September wedding helps. Some days I just cry and I feel disgusted with myself. My skin looks disgusting and it feels so hot and itchy. I just hope that I feel better soon. Tough to work like this. I am sending a lot of hugs to all of you and positive thoughts for very good days ahead.0 -
New here too, although I've been reading for a while. I've wished I had found this site a LOT sooner than I did. I think I would have done everything differently, especially on getting second opinions and even knowing the right questions to ask. I probably would have questioned everything! I went into this last summer knowing absolutely nothing about BC treatments and options. So I took what the surgeon, oncologist and RO said at face value.It just never occurred to me that maybe they weren't telling me everything, especially about risks and SE's. I thought after all, they are the experts, not me. And so .. I trusted.
About the rads, I did not do well. I do not mean to scare anybody. But I feel all the facts should be known and not sugar-coated, as I feel some are. Everybody needs to be aware of what CAN happen. That is our right.
I was told there would be minor burning, like sunburn. My RO never mentioned blisters that took weeks to heal. I was lucky that I only had two small ones, not nearly as bad as some of you here. The rest of my skin only got very pink, but I had a lot of swelling and pain. I have cried when I read some of your stories here and my heart has broken for your suffering. I am happy for those who did so well, but wish we could have all have had such positive stories without these horrible things happening.
So .. the burning was not my MAIN problem, although it hurt. What I didn't know how badly it was damaging the INSIDE of my breast. I have heard it compared to slowly frying bacon. I was never informed about the shooting and stabbing pains. It felt like somebody was twisting a knife inside my breast and this went on every day, throughout the day, and night. My RO did not seem to believe me and said no, that doesn't usually happen. She didn't think it was from the rads! I believe she did know, but would not admit to it. I never had those pains before the rads, and told her that.
I was told I would have minor fatigue, but that a nap or going to bed earlier should take care of that and I should be mostly recovered within two months. Instead, I am still exhausted and weak. I have NO strength. At my worst during my rads, my muscles ached, I felt woosy and I couldn't sleep at night because of the pain. I did everything they said to do, moisturize, drink plenty of water, eat plenty of protein, rest when you can, etc.
RO informed me they would be hitting the upper 15 percent of my left lung, but that it couldn't be avoided and "we don't really use the upper part of our lung that much, anyway". What the .. I was shocked, but she emphasized she felt good about the treatments I would be getting. I am also a former smoker (she knew that from the get-go), and I no longer am a smoker. Now I have read that former smokers are at a much higher risk for lung cancer because of breast rads.
My original CT scan last summer showed nothing to report except some scar tissue from a previous pneumonia years ago. Now my latest CT scan shows this month that I have mild upper lobular Emphysema. How could it have changed that much in 6 months .. I'll give you one guess. I'm now short of breath and my blood oxygen level has gone from 98-99 to 91-94. It did not show any mets or re-curring cancer. BUT I had to wait a couple of weeks to see her and nobody even called me with the results. I had to go to Medical Records and get a copy of my own report to know exactly what was going on.
Now then .. she did tell me up front that there is a risk of fractured rib bones, but that if that were to happen, it probably wouldn't happen for at least 18 months. And they wouldn't just "be hanging there", she said. They would just be fractured. Just be fractured? From what I understand about fractured ribs, it can be pretty painful every time you breathe. After radiation has damaged them that much, they are never able heal themselves. Mine aren't fractured (yet at least), but they ache. I am crossing my fingers that they don't fracture. However, now that I am on Femera for hormonal therapy, I know that also has an effect on bones, so I worry about that.
Anyway, I saw her once a week during my treatments. I remember at one point, I told her about how I had been feeling light headed and faint lately and had thrown up a couple of times. She said that couldn't be from the rads. Yet, I was doing some reading on another website (don't remember which) and it did say that was a possible SE. I was relieved just to know I wasn't going crazy. I do stick to the major reputable sites, not the fly by night unknown ones.
Anyway .. all of my concerns were dismissed as if they were nothing and she even made the suggestion that it could be from stress. Stress! To me, that was like a slap in the face .. or that she thought I was too old or stupid to know anything or that I was a chronic complainer. BTW, my RO was a very young woman and I think from the beginning she had her mind set to make everything appear hunky-dory, despite whatever problems I had. I believe that is what they are TRAINED to do. All of the techs were nice, but business like.
I really think they don't tell you everything because if they did, they KNOW you would have reservations and they would lose us, the patients, who are keeping them in business. Just for another bit of information, there were no pictures of anything on the wall or ceiling, just gray walls, my arm over my head, me on my back, feet strapped together and the "don't move" as they left the room and I got beamed from several angles. I remember trying to distract myself by thinking of other things, but it never worked.
Meanwhile, here I am with what she told me was a seroma building up near the sentinel node scar, even though my surgery was last fall. The area is dark grayish brown on the skin and swollen. Both it and underarm area feels like a rock and throbs. The ribs ache. I had none of this before the rads.
She said she didn't think it was infected (after I asked) because the skin wasn't red. She would not recommend an aspiration. It IS swollen, hot to the touch and very painful, like I told her. Again, totally dismissed. But she did offer for me to see a counselor. What the .. I asked for pain meds and she said that she would rather me to go my GP for that! I also asked for blood work. Actually I asked both her and the oncologist for blood work. I am especially concerned about my thyroid, because of the side of my neck being in the rads field. They both looked at me like I had asked for something they never do .. and I know they do run blood work. There is a lab right there in the same building and in the same medical group. But they told me I should go to my primary care physican for that.
So .. now I am told by another doctor that is NOT in that medical group that this is no seroma, but a build up of "destroyed breast tissue" that was caused by the rads .. he compared it to grissle (sorry about spelling) like what you would find in chicken (not the same thing as my scar tissue, which I expected) and there is nothing my doctor can do about it except prescribe meds for pain. There is a lot of it and I know that it is not going to get any smaller. Well, I guess I will have to live with this pain for the rest of my life .. and the quality of life will never be the same.
I am not young .. I'm in my sixties. I also have very dense breasts. I don't know if these things could make a difference in my SE's .. maybe .. maybe not. I am not sure they would even know .. or care.
IF I could go back and re-wind, I would have refused radiation. This is only now that I know (from reading here), if you refuse to have rads, you CAN go back and have them if the cancer re-occurs .. but if it re-occurs after radiation in that breast, you can NOT have that breast radiated a second time. I wish THEY had told me that. They led me to believe I had no choice but to do it now if I wanted to live.
I am not a happy camper. I feel horribly betrayed.
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Kitty sister, I am so sorry about the whole situation. I think it's a textbook case of everything we all fear about radiation. Would you mind is I asked how many fields of treatment you had and how many days of treatment? Thank you for any additional information you care to share.0
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Hi, Hopeful, thank you. I was set up for 28 rounds, on a five day a week basis. She planed on doing 5 boosts, after that, I believe. I'm sorry that I don't know the exact numbers of grays (I think that's what they call them?).
The machine rotated around the table I was on and it had a square screen, and it was like 3 different angles. The process did not take that long. I would say half of the time spent was getting me lined up correctly and checking my stickers they had put there for accuracy. But I stopped the rads on #15, due to all of the problems I was having. I have to be honest about that, even though I haven't read where anybody else here has bailed out of rads, except me.
I had even asked my RO a couple of days before this if anyone had ever had to stop completely and she told me that she had never had anybody quit. But .. even though I felt like an oddball, I know it was the best thing for me to do.
Meanwhile, my doctor has told me that a lot of people do have to stop and that I should not be made to feel freaky because I did. I was really surprised when he told me that. Then he went on to talk about some other cases he had seen.
I still am really glad for those that did NOT have the problems that I did. So many seem to sail right through and even keep on working, etc. during treatments. We are all different. I guess I'll always wonder if it had something to do with my age, health, or who knows what.
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I had 33 rads over five weeks (think it was 5 weeks - it was 7 years ago so...) I was blistered black and of course I rarely talk about it online because we don't want to scare people but I've had friends and relatives who had the same awful experience and none of us quit because we were made to feel by our ROs that it "just isn't done" - it took me years to not have a panic attack when having a shower because of the pain back then - guess it is necessary though I think we should be receiving some kind of counseling while going through it - my RO was quite frankly a "bitch" so I used to sneak upstairs to my MO and he'd talk me into going back day after day - chemo was a breeze compared to rads - many people do just breeze through it but I'd venture a guess that they don't have extremely fair skin (which I do) I don't think age has any bearing on it - all the cases I know about were in their 60s.
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That is why I'm limiting my posting here for now, to just this topic. Believe me, I know how it sounds. At the same time, I wish I had known more about what to expect, instead of after the fact. It's all recent for me. Again, we're all different. I am glad you got through it, Sandy. I wish you nothing but wellness!
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I decided to delete my posts. My problems with the rads could possibly cause newbies not to consider them. I wouldn't want to be responsible for that. I will be available for a private conversation if interested.
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Grateful,
There will be times when you will not feel grateful, when you will not feel fortunate and you will not feel positive either.
Its OK, those are all real feelings that ought not to be denied.
The cancer center where I received treatment had a wonderful social worker that offered all kinds of support. I hope you get everything you need and breeze right through this.
6 months later all i have as a residual of rads is a slightly tanner right breast than the left
Hug to you
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I'm a newbie awaiting a call from my RO to start radiation, I just decided to forego Chemo and filledwith anxiety to get things started. I will be getting 16 treatments and really appreciate all the information. How long of a recovery period after radiation? Does hormone therapy start right away after radiation?
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CM53, So glad you could dodge the chemo bullet. I had both chemo and rads. Rads wasn't too bad. I had some skin issues and some fatigue but not too bad.The skin issues was a burned area on my clavicle and some pretty bad itching on my chest. Hydrocortisone cream worked well for the itching, and silvadene was amazing for the open burn. It cleared it up in just a few days. I have a good disability policy through work which let me stay home for the 10 months of treatment and not have to work through it. Once Rads was over I felt a little tired for a few weeks. I went back to work exactly 1 month after my treatment ended. I'm sure you'll do fine as well. I started my tamoxifen at the very end of rads, so we would know what SE's were from rads or tamoxifen. I've been on Tam for almost 4 months now and no SEs!!!!! Good luck to you!
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Hi cm53,
You might find the links below helpful while you prepare for treatment.
A very common reported side effect of Radiation in particular is skin reactions/skin irritations.
--Managing radiation side effects.
--Side effects to the skin and skin care during Radiation
With regards to hormonal therapy, it can be given before, at the same time as, or after other breast cancer treatments.
Hormonal Therapy: What To Expect
Best of luck with your treatment, we're hoping for a speedy recovery for you!!
The mods.
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CM53
http://ww5.komen.org/BreastCancer/SideEffectsofRadiationTherapy.html
http://www.webmd.com/cancer/what-to-expect-from-radiation-therapy
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-hormone-therapy
http://www.nationalbreastcancer.org/breast-cancer-hormone-therapy
http://m.cancer.gov/topics/factsheets/breast-hormone-therapy-fact-sheet
Check many sources as each research group provides a little different perspective of what to expect and what you may experience. Recovery and side effects from rads is very different for everyone and depends on many things. Hope these links help.
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