A rad onc weighs in on radiation "burns"
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Ann
Breathe. Remember that most people posting here do have legitimate complaints. They are looking for answers and support and a place to scream, vent and cry.
Bu the vast majority that have it easy feel no need to post.
If this helps, my experience with rads was quite positive. Loved the RO, the techs were kinds and funny too, the facility was insanely modern and tranquil.
My skin became very pink quickly, and then very itchy and tender.Th best skin care for me turned out to be an Rx of cortisone cream. I felt fatigue halfway through the 35 treatments. The fatigue lasted another 3 weeks.
Its been 6 months. The effective breasts is a different color the the other. Like a permanent tan. I am very very fair skinned. The nipple is blanches to almost invisible. The bills hurt more than the rads.
I do admit one thing, they really just skimmed through the bad stuff. The RN handed me a large print paper wit the side effects listed, and said read this, if you have questions, ask, if you experience any of this tell us.
All in all that part of treatment was easy.
I wish the same for you.
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I used Zeroform pads (I'm not being compensated for posting the company name!). They were about $1.25 each in the hospital pharmacy, I lost a big half moon of skin under the breast, I used about six pads, almost all 5"x9". Here's my advice for this type of product based on my experience and some advice from the pharmacist:
- They leak easily, almost always. They will leave greasy stains on clothes.
- Get to Goodwill or a resale shop and buy super cheap small-arm-hole body-hugging tank tops in a size that is one or two smaller than your normal size. I found athletic tanks that had fairly high necklines. I bought six for $4. If they get ruined, i won't lose a huge investment.
- Get some nonadhesive sterile dressings large enough to cover the pads. I asked my RO, and she was able to give me a handful. I thought they were kind of expensive at retail price.
- Get clean and place the pad over the damaged skin. Put the dressing over the pad. DO NOT tape it in place unless your RO says you can. The tape adhesive may not be a good idea if you're still in treatment.
- I had the luxury of not needing a bra at the time. After the dressing, I just pulled a tight tank top on and made sure the pad and dressing stayed in place. If I'd needed a bra, I probably would have put it on after the tank (I buy nice bras, hate to damage them). But I found that the too-tight tank added some nice support.
- If your RO asks that you wear no lotions or deodorant for a period of time before the radiation treatment, be sure to get the pad oil off in time!
My RO was really pleased that there was significant healing in 4 days of night-only use in the area. (I wore pajama tops over the tanks). People do wear them during the day also. During the time I was using them, I continued using my lotions and a little bit of Aquafor all over (the tank top was great for Aquafor protection too). I lotioned four times a day from the first day of treatment. Not everyone needs to do the same thing I did, of course, but my skin is super sensitive, and my RO worked with me on the frequency.
I hope this helps anyone considering petroleum pads. I welcome suggestions, as well as content and editorial corrections!
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this is an interesting post. I am 10 rads away from being done and the. Supposed to go on the aromo inhibitor although one of the ladies thst does rads with me told me there is another drug Lev0.... Something with that Name that has less side effects. I wlll talk to my medical on I again and ask her if I don't take a med at all what r chances of reoccurrence
It was my understanding that people that are ER+. Should take something
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FloirdaThat's the general opinion of all MO. is that ER+ bc need something to control the estrogen. There are a few alarming posts here of women that stopped AI and had a recurrence. AI don't kill cancer, but they kill the estrogen that feeds ER+ cancer.
Don't decide now that you wont do well on AI. I know women that feel no different. Very minimal SE. So maybe you'llbe one too
Rads were not bad for me. But stopped abruptly HRT, surgery right way, starting AI right away and Rads was all too much. That should have happened in steps.
No wonder I felt like I was eaten by a buzzard and pooped off a cliff.
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Raider Girl, I went to the beach the other day and the buzzards gave me the "eye". All this chemo fat I must have looked like a damn buffet!
I still have some swelling on my chest wall after rads, anyone else have this? And I have a blazing pain on my side right at the end of the rads field under my arm. Anyone have that? And a partridge in a pear tree.................some days I feel like there is no end ever to SE.
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Beachy
I can just hear them now...mmmm here comes that yummy girl. We wont even have allot of hair to choke on.
You can take down a buzzard just stay away from their breath. I heard it can melt a shit wagon.
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I ladies, I've seen others talk about corn starch, is that just regular old box of corn starch or something else. Thanks
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To a carpenter with a hammer everything seems to be a nail. Healthcare today is a schizophrenic contradiction between trying to save money and trying to give the patient a good outcome. As both a former healthcare provider and TWICE the partner of a breast cancer victim, I retired so I could spent the last ten years studying molecular biology and cancer biology. Don't get me wrong, between the last time and this one much has changed and I can see it in the best of cancer centers then and now. Monoclonal antibodies have been quite a wonder when applied to cancer and to rheumatology alike. But far more mind bogging has been the stem-cell hypothesis by which stochastic stem cells (cells that reproduce themselves) proliferation, consisting of less than 1% of tumor burden, are deemed the cause of metastasis and these are deemed so able at DNA repair that they are STIMULATED rather than KILLED by radiation therapy. Yes, yes, I know the literature showing statistical benefit from radiation therapy. But that's the mathematics of the blind, not the mechanistic understanding of the wise!
Statistics has led us down a lot of roads that took millions of clinical research $$ off a cliff, sometimes even through fraud by originally well intended academic clinicians that could not accept the mathematical failure of their end points. So, here we are 2015, forty plus years of the War on Cancer and we have two highly respected oncological researchers, Tomasetti and Vogelstein telling us in the highly reputable journal SCIENCE: "These results suggest that only a third of the variation in cancer risk among tissues is attributable to environmental factors or inherited predispositions. The majority is due to 'bad luck,' that is, random mutations arising during DNA replication in normal, noncancerous stem cells." So, one would ask: if stem cells are stimulated rather than killed by radiation; and, if we know so little about cancer stem cells as to deem it "bad luck" that some cells undergo mutation, epigenetic acetylation of genomic aberrations originally methylated, etc, what can you as a radiation oncologist tell us about, let us say, what damage you may do to a cancer of the breast knocked out (almost??) by neadjuvant monoclonals and surgery but possibly stimulated by radiation therapy?
I fear that those of us "in the know" may be no more in the know than the victims and their families and as such cannot be so categorical in our tutorials.We're back to the old adage: "Don't describe it until you've tried it." Burning is an inflammatory condition that provokes cytokines and chemokines that FEEL LIKE burning. All the effects of radiation therapy are described as possible 10 to 15 years post radiation therapy in the consent forms. You might try to explain why. Is it killing "bad guys" that clears the "reeeaaal bad guys? We don't really know except for the stats....and then for any one of us, patient or loved ones, it's all a matter of N=1!
Isn't it a bit of quibbling when you say that radiation doesn't accumulate but its effects could accumulate to manifest 10-15 years later?
We've been at war with cancer for quite some time. In that time some of us have been at war with the Viet Cong, with alQaeda in Iraq and with the Taliban in Afghanistan too. As one close to all those "wars," I feel that we may be loosing the one on cancer for the same reasons as the other three: idee fixe! Our thinking gets comfee and well remunerated in certain practices that we really can't argue for so we just wave our WHITE coats instead of red cape to calm the bulls that want a cure now!
Medicine has been turned into a work horse instead of a scientific art. That is why so much of it is now put into the hands of Physician Assistants and Nurse Practitioners. In my first experience, every visit to the cancer center was with the oncologist, now-- though my wife pays the co-pay to see a specialist, she only sees an oncology nurse with a hard to fathom alphabet soup of letters behind her name. And how a radiation oncology gives her a weekly look-over that would make you scream bloody murder if your mechanic spent that much time with your car at its 10,000 miles check-up.
Kind words sandwiching a pompous correction is not what one expects from a companion through this deadly journey that scares the patient to death. I always thought that all oncology radiologists should be made in residency to look over and over and over and over again to the films from Hiroshima and Nagasaki. Radiation was merciful only to the dead. Of course, I didn't stop my wife from getting her current course of radiation therapy, but I do have something of a jaundiced eye towards the oncologist who could only say, "yes that too is possible" to EVERY ONE of asked questions, and then she disappeared. If I spent eight hours cooking and sucking on a brain, you can bet that I spent all the time after dealing with the deadly swelling of the brain. So, the least of those who fights my wife's cancer should not be the one least there, n'est pas?
The fault is not of the physicians for, since residency, they learn that you are there, EVERYWHERE, or you are out of the next year in pyramidal residency years. So, little wonder that when the $5 million a year administrators give you a whole flock of patients to manage, you're bound to be rather formulaic. But we must make the effort to understand that a patient's MISinformation is a desperate grasp at illusory straws by a drowning fellow human in excruciating pain and fear, neural inputs that dfry one's every mental compass. That they need to grasp at these only speaks of how much medicine grasps at straws while trying to keep the insurers and administrators from saying: "NO MORE!" It was not long ago that physicians prescribed the same things our "mis"-informed correspondent in this blog prescribed. I'd say that-- at the very least-- she may be as misinformed as we were not too long ago.
When I got so desperate that I wanted to understand the disease better than I wanted to understand the patient I knew it was time to retire. I recall when I was a medical student I had been diagnosed with a leukemic disorder. I came back to the USA and saw a hematologist that I can only call a "Jewish sage." When I asked him how long I had as I didn't want to go back to Europe to suffer miserably just to be buried with "MD" on my tombstone, he said: "How the f--- do I know. But I'll tell this, that if you don't go back I'm going to charge you for all this care." Later when I came back to America, I told him that what kept me going was his frankness, to which he replied: "We must always remember before whom we stand." This is different from all the cancer patients I saw in clinic in Eastern Europe, for whom we could do nothing but they were fodder for papers to be submitted "in the West." Now, decades later, it seems to me, cancer is being treated more like in Eastern Europe than by my hematologist. Indeed, especially radiologists, must remember BEFORE WHOM WE STAND!
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And your point is/was........
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I'm sorry if it wasn't clear to you: the professional sticking with the patient is not what it used to be back when it was deemed a shared journey into the abyss, though the field seems to have evolved it has not yet really become so strong that physicians can let the treatment speak for them since they are masters of the disease....they are not, yet. Therefore, a closer individualization of care is needed rather than a rejection of the desperate grab of patients at straws such as "natural care." Would it not be better to admit how little we know (note the Tomasetti and Vogelstein quote) and then give more time to individualized the patient-oncologist interaction? If we go back to Hippocrates, care was standing by the patient, not treating her like one of a herd of unfortunates. Downplaying the side-effects of natural "therapies" patients grasp at and offering little more instead is NOT the answer. What's needed is more time to be reassuring and persuasive....to explain HOW and WHY so the patient can feel that her cognitive state is as interesting as her disease. The authority of expertese is eroding so in the end we will be left with deciding whether you are a statistical lab rat or a companion in a journey to the oncologist whom, in the final analysis, is not much less blind than you. Therefore, personal caring has to go with the un-sureness that comes with the therapy. That means doing MORE for LESS patients as some oncologists do. Empathy is needed to create trust as expertise that knows what to do is not really available as we once thought it would be when we started the War on Cancer!
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You might consider this as an article that radiation oncologists might do better dealing with than just criticizing the groping in the dark of worried patients and family:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC341333...
Terra incognito is a sad place to be and we should stick much closer to eachother if we are ever to battle it effectively rather than "just stick to the protocol" and shoot down patients' desperate grasp for adjuvant reassurance.
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Speace - just plain old cornstarch...blush brush to dab on. BestWishes!
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Raidergirl, I love your sense of humor!
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eugnid, that ncbi study certainly gives pause. This decision is killing me right now. I am having a lumpectomy on Thursday, and then will shortly have to decide. I had a mastectomy the first time, mostly to avoid the decision, but I am built so that I lost most of my lymph nodes to the mastectomy. Would like to have one "good" side.
I keep going back to the fact that radiation causes cancer. How is the radiation therapy different from other types of radiation, the ones that cause cancer? I have had more than my share of radiation exposure, actually worked at a nuclear weapons plant for a year that has a class action award for former employees that have been diagnosed with cancer. I am five days short in qualifying for the award. I blame my first crazy tumor on wearing my iPhone on my purse strap, the new one I blame on many hours with my iPad on my lap with wifi on. There are other factors of course, but my gut feeling is very strong about this.
So I am between, hell no, not more radiation! And the recurrence numbers I know will be quoted.
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Bump for those facing rads!
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Hi all, kicked Chemos Ass and cold capped and won. Kept my hair did great. Now I'm approaching my "cone down". Under my right arm is an open wound. After gaining weight from chemo I have been working out again. But today under my arm has a 4 inch open wound. Help!! I have the silvadine but it's not helping. What can I put under my arm to stop rubbing! ??
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breastcancer 4
Dang, you got to keep your hair. I'm doing a little happy dance for you.
As for the 4 inch wound, babygirl, that has to be addressed soon. Did you consult with the Rad Onc?
I believe the appropriate treatment is wet to dry dressings. Domesboro solution on gauze over the wound.. I found that a soft panti-liner works well. When the gauze is dry, rewet it. I think 4 times a day is the rule.
Someone else posted on this discussion about using Domesboro.
Gentle hugs
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breastcancer4 - if you can't get rad onc appt or advice today - can you call your local hospital and ask for help from a wound nurse - they are the best - I was lucky enough to have one as the charge nurse when I was in chemo so I just went up two floors at the cancer clinic and got her to help me out - I didn't have the deep wound though - I had really bad burns under my arm so I can only guess at the pain and discomfort you are in - hope you're getting help today - it's important not to delay treatment - let us know how you are doing.
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Breastcancer4, I had an open, oozing radiation "wound" on my back, just behind my arm, that was about 2" x 5". It took months to heal, and my rad onc and his nurse were 100% worthless when it came to help with wound care. I was "dressing" it with maxi-pads--yes, THOSE things--just to have something to absorb the ooze.
Finally someone on these boards suggested a wound dressing containing hydrogel called "Vigilon." It's a wet-feeling, floppy sheet that you can secure over the wound. It helped heal mine much faster than just leaving it open to air. PM me if you need more info.
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Medicinal honey has worked for a friend.
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Here is a honey story for.
Honey has been used for wound healing for years. When I was still working as an RN, we had a patient with chronic varicose leg ulcer. Ugly mean looking wound that wont heal. Treatment is always some kind agent , cover the wound and keep the bandage dry until the next MD visit for debridment .
She used honey
Came in for her checkup. When I removed the bandage the wound was crawling with maggots. No joke. maggots
I nearly lost it.
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LOL...RaiderGirl, I have seen maggots in wounds too. They're 100% gross, of course, but I will say...they keep the wound nicely debrided. Ugh.
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Oh my, excuse me while I go throw up!
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Medicinal maggots LOL. They work. The maggots are a great wound debrider as they only eat dead stuff. Not gonna talk about medicinal leeches. They are great too.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771513/
Link to a thread I did allot of wound care work. It's a pick and choose what works for you thing.
https://community.breastcancer.org/forum/44/topic/754935?page=4#post_4467847
I added this link to it.
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Just finished the Outlander series. The woman is a doctor, goes back in time, and thinks maggots are great! All the medical stuff was very interesting.
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I just wanted to say, post radiation treatment, that all of the information I read on this topic was very helpful. I too had a radiation oncologist who thoroughly explained the entire process to me and put me completely at ease. I had 20 radiation treatments at 267 rads per treatment. Fortunately I did not have too many side effects from the radiation, other than some cracking/chapped skin around the areola. During radiation treatment I slathered on pure aloe vera gel an hour before treatment and again right after I got home at my rad onc's suggestion. After radiation when I started getting the dry cracked skin I used Calendula ointment - again suggested by my rad onc - it worked wonders. I am now 6 months post treatment and have some slight hardening in some areas of the breast and my left breast looks like I spent some time in a tanning salon with the right breast covered, but nothing too terrible to talk about. I thought it interesting that one of the questions my rad onc asked was how well do I handle being in the sun, and when I told him that I tend to get a little red but that it turns into a tan on the next day he said I should be okay with regards to some of the more damaging effects of radiation. I am grateful that he was right and my experience with radiation was not a horror story as I have read for some it has been. Note: I have a co-worker whose wife was recently diagnosed and her cancer was pretty much same as mine with regards to stage and type, her rad onc only prescribed 16 treatments. While another co-worker's wife with similar stage/type who was diagnosed 3 years ago was given 30 treatments - and had horrible side effects. Perhaps it is the number of treatments and higher dose of radiation over time that is the cause of so many of the nastier side effects that some women have encountered. My rad onc had said to me that they now know that they don't have to do the lengthy treatment plan they did 3 years ago, that 3-4 weeks of treatment - 16-20 total treatments is sufficient to do the trick for us stage I'ers
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NJC63
I have read these discussion boards since my diagnosis. I have come to one conclusion without any doubt. All these physicians are not reading the same medical books.
Your Rad ONC ok'd aloe gel before and during treatment.
My Rad Onc he didn't care what I used so long as my skin was clear and clean during treatment. Absolutely nothing on the skin during.
WTF? Who is right …yours or mine?
DianaNM
I am addicted to the Outlander series. Claire Fraser is fond of leeches, not maggots.
(Holy sh8t, I am discussing the medical preference of a factious time traveling character in a novel ... Must be all these meds.)
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Raidergirl, I think it's the opposite. She detested the quacks that used leeches, but would use maggots for very bad infections. Guess one of us will have to read the books again to figure out who is right. Ha
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I just finished the last of my 16 partial-breast (lumpectomy-cavity) treatments today. My cavity seroma enlarged, my breast was occasionally sore (from the inside) and my nipple is sensitive, and the color of the irradiated skin is pinky-tan. But I had no peeling, itching, blistering, ulceration or even irritated skin. Each time, I immediately slathered on Aquaphor in the dressing cubicle before I got dressed again post-treatment, and used either pure aloe vera gel (no alcohol or fragrance, purchased at the cancer center’s pharmacy) or calendula cream every night (twice daily on weekends). Because I was told to have totally bare skin for 4 hours before each treatment, I showered off the previous night’s stuff each morning before getting dressed.
I had a rather unusual situation, though--my SNB incision (in fact, my entire armpit) was outside the radiation field. I didn’t know this before I began treatments (and I was given the same printed handouts as women undergoing whole-breast radiation), so I laid in a supply of cornstarch baby powder and nonmetallic deodorant (Tom’s of Maine) beforehand. Turns out my RO was fine with me using my regular Dove antiperspirant. And because the underwires of my bras touched neither my lumpectomy scar nor SNB incision, he was okay with me wearing my regular underwire bras. (All those wirefree bras--including some with scratchy linings that itch worse than the fancy lace underwires--as well as the shelf-bra compression camisoles I was told I would end up wearing instead of bras--were totally unnecessary)! Now, mind you, I am rather spectacularly overendowed (all you looking for large-cup reconstructions or augmentations, be careful what you wish for). Pre-surgery I was a 38I or 40H. Only an underwire can properly support my “girls” without sagging. Now, I am a 38J or 40I. Not for the faint of heart, leery of online shopping, nor light of wallet. I did buy some cheap front-close Leading Lady stretch-cotton leisure bras in a few colors for immediately post-op, because the standard-issue surgical bra into which they stuffed me in the OR before waking me up was several sizes too small. (XL? Bwahahahaha). I was told to wear a bra 24/7---and this much was true. I am far comfier in these leisure bras (and maybe those camis) beneath my nighties or PJs than going braless. Word to the wise (wide?)--I had to buy the largest cup size, 40F/G/H, which is still a cup size or two too small. I’d been warned to avoid skin-to-skin contact but I had no irritation--and no reddening--beneath my breast, either.
Finally, as long as I got my 8 nightly hrs of sleep, the dreaded radiation fatigue never kicked in. (There went my excuse to bow out of stuff).
I will re-post this in a thread called “Women who had no problems from radiation.” In another thread, in which the OP asked if anyone took endocrine therapy without suffering bad side effects, somebody posited that the majority of patients who post do so because they are having a rough go of treatment; so there ought to be some encouraging threads posted by women who had neither surgical complications nor terrible side effects of various treatments. So when it comes to radiation (and lumpectomy, but for seromas), I am going to be one of those women.
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