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A rad onc weighs in on radiation "burns"

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I found this on another site and thought it was worth sharing here.  (Talk amonst yourselves.) 

Cool

 Hello- I am very sorry for your pain and suffering. I am going to offer some information, but it is important to me that you understand I am not arguing about what you have been through or trying to minimize it- just helping you with the terminology.

Radiation wounds are not really burns, and they are not rated by degree. Medical professional who are trained in radiation usage will generally not use degrees to rate the wounds. Instead, they will use "grades" from the internationally accepted CTC (Common Toxicity Criteria) that is used by all major cancer research organizations (that is why it is call "common"). The reason you can't use degrees is that burns start at the top, and spread downward, and the "degree" of the burn has to do with how far through the skin thickness it caused damage. That isn't at all what happens with radiation- therefore the degree system isn't very useful.

With regard to some of the advice in this thread- all I can say it that it is well intended, but perhaps not exactly accurate. I do not, in any way, discourage patients from forming communities and sharing information- but sadly that information is sometimes not accurate. Although we can't stop people from passing around bad information, we (physicians) can minimize that aspect of cancer care by slowly and patiently explaining what we are doing to your body and why- and of course, what you should expect as side effects. As a Radiation Oncologist, my consults generally go well over an hour, with an additional 15 minutes once a week during therapy, and 20 minutes at each follow up. So, for even the most routine case (which are never routine to the patient) I will spend several hours over the course of three months sharing information, explaining, listening, and responding to concerns. I am not a saint- I am paid to do that. The problem is not that physicians are lazy or greedy (some are) but instead perhaps the problem is that physicians often do not understand that their job is more than the performing of the service- their job is also the teaching, comforting, and true healing of the patient. I do not think that the accurate and safe delivery of radiation is good enough- it is only a small part of the job, and if you aren't going to do the whole job, send the patient to someone who will. I don't think I apply radiation with any more skill than other doctors, but perhaps I spend a little more time helping my patients understand and prepare for what I am recommending.

With that in mind, please allow me to share a little bit of general information about radiation wounds- although I cannot address your case specifically, having never examined you. There is zero build up of radiation in a patient from external beam radiation therapy (although there is from free isotope therapy or seed implantation- but those are very different). None. It does not happen. So you don't need to clear any residual radiation out, because there isn't any. I am not out to insult anyone, but to suggest that there is residual radiation following external beam radiotherapy is just plain incorrect.

Radiation wounds are not "damaged" skin, per se, as much as they are "missing" skin- let me explain- radiation causes skin to fail to reproduce properly, and thus as you "use up" your normal skin, like we all do all day, there are no new layers of skin coming up from the bottom. So eventually the area can ulcerate. This might look like a thermal burn, but it has very little in common with a thermal burn, and the treatments for thermal burns will not help much.

Let me be clear- many skin reactions don't need, nor will they find benefit from a 100 dollars worth of potions and lotions from the herbal medicine shop. You expect me to say that because I'm a doctor. Perhaps some will stop listening to me now because I don't think that a plant from the middle of the jungle ground up and slathered on your skin will fix the problem (why would it?). But, allow me to also say- most skin reactions don't need, nor will they benefit from 100 dollars worth of laboratory chemicals stuffed into a brand name prescription from the pharmacy.

Neither approach will help heal the skin very much, and neither will prevent the damage in the first place. Do I believe in natural cures? You bet. Your body, in its natural amazing way, can regenerate skin without lotions or potions or pills most of the time. Very few radiation reactions need serious supportive care, most (not all) will just get better. Of course, there are some severe wounds that will require medical attention, but without an understanding of what is wrong, no one, be they MD, DO, ND or Shaman, can be expected to properly assist you. If your medical professional is using terms like "second degree" to describe a radiation wound then there is a good chance (although I can't say for sure) that they are not trained in any of the more than 100 years of science and knowledge that can help you in this situation.

Now, keep in mind, I said herbal potions and laboratory chemicals won't heal the wound much faster- I didn't say they wouldn't sooth the area and ease your suffering while your body repaired the damage. That they are very good at. For a grade I skin reaction, a good non-alcohol containing aloe is about as good as anything that costs a hundred times of much, in my opinion. I would rather a patient use aloe, but there are also some lidocaine containing topical medications that are helpful if they insist. Colloidal silver (a very natural medication for the record, despite being sold at the pharmacy) can inhibit the growth of bacteria, although it may not cure an active infection. Infection in general is actually not that common in radiation wounds- but it can happen and should be treated when it does.

Rarely, radiation wounds do need more assertive supportive care. I'm truly very sorry that you had to experience such a situation. Keep in mind, you don't have to clear or remove dead skin from a radiation wound like you might from a thermal burn- at least not aggressively. The problem is missing skin, not damaged skin, or at least that is the more logical way to model the situation.

Missing skin can't be healed with an herb, or a medication, and missing skin sure as heck can't be scrubbed at until it isn't missing anymore. Missing skin, for the most part, needs to wait until the body grows more skin. That can take 2-4 weeks for very mild reactions, to several months for serious radiation injuries. Make sure your medical professional has training and certification in these issues, keep in close contact with them, and ask them in no uncertain terms for a timeline that you can use in your healing expectations.

Then, if your body does not respond on that timeline- ask them why, ask them if something is wrong, ask and then ask, and then ask some more, until your doctor explains what is going on with your body to your satisfaction. You have that right, and you also have that responsibility. Very few physicians, and far fewer patients, are qualified to give advice on radiation wounds. Find support and comfort on the internet- but find advice on the cause and cure for radiation damage to human tissues by consulting a board certified Radiation Oncologist- one that cares about your case, and takes the time to explain things to you.

God bless you and good luck.

 ***************

Discuss.....  

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Comments

  • superfoob
    superfoob Member Posts: 121
    edited February 2012
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    Thank you for an outstanding teaching moment.



    The way the RO explained what Radiation does was very clear (damaged vs. missing).



    I am currently in Rads and my RO recommended Aloe Vera Gelly to help soothe any irritation I may feel. After reading the Boards here, I asked about Calendula Cream (because one should always ask their doctor first before trying stuff!) and he said that would be soothing as well. Never did he say it would keep Radiation from doing what Radiation will do to my skin.



    I guess I found a keeper with my RO!



    Thank you again.

    Smiles!

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited February 2012
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    You're welcome. I thought it was a very matter-of-fact but still thoughtful and empathetic piece. I am sure it was written by a woman.  LOL!

    I think the point is, use anything that makes your skin FEEL better or relieves your discomfort but nothing is going to change the way your skin reacts to treatment, I like that she was so upfront about it when she said, ""Let me be clear- many skin reactions don't need, nor will they find benefit from a 100 dollars worth of potions and lotions from the herbal medicine shop. You expect me to say that because I'm a doctor. Perhaps some will stop listening to me now because I don't think that a plant from the middle of the jungle ground up and slathered on your skin will fix the problem (why would it?). But, allow me to also say- most skin reactions don't need, nor will they benefit from 100 dollars worth of laboratory chemicals stuffed into a brand name prescription from the pharmacy." 

    I hope everyone reads it.   

  • Juliebell22
    Juliebell22 Member Posts: 37
    edited February 2012
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    Thank you for sharing this information! I just had an "AHA!" moment. I just finished rads 6 days ago, and the itching is intense. Mr dr gave me hydro-gel pads that seemed to be the most effective at soothing the oozing areas. So happy to be finished. Hoping it goes quick and smooth for anyone else going through it!

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited February 2012
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    Julie, I have the hydrogel pads, too. They DO help the itching, don't they?  I'll even just let an icecube melt over my breast while I'm watcthing TV! And the coconut oil I'm using at least keeps the skin from feeling so tight. I guess we do what makes us feel good and hope for the best! 

    And Julie, you look adorable!! :-) 

  • superfoob
    superfoob Member Posts: 121
    edited February 2012
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    What are the hydrogel pads? Do you have a linky-poo?



    I use a little circular frozen gel pack that my BS gave me after my surgery.

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited February 2012
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    Geegster, here are the ones I use...

    http://www.lindiskin.com/body/lindi-skin-cooler-roll 

  • Jodycat
    Jodycat Member Posts: 6
    edited February 2012
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    What a wonderful post. It's informative but even more it exhibits a caring attitude that I - and surely many of us - hope for in our professional guides through this very hard disease.

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited February 2012
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    Exactly, Jody. There aren't too many things I read that I feel are worthy of reposting but I just knew I had to share this with my sisters!

    (Gawd, my boob hurts tonight!!) Yell 

  • yramal
    yramal Member Posts: 90
    edited February 2012
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    I wish I had seen this when I was going thru rads 2 years ago. It would have helped me understand more what was going on with my body.

    I have no complaints about my radiation oncologist, as some do. He was(and is) a very kind, compassionate person. I had severe "burns" under my breast towards the end of treatment, and not once did he dismiss my symptoms and discomfort. His nursing staff was wonderful as well.

    As far as those hydrogel pads? Lifesavers! Here is the brand I used.

    http://www.sterlingmedical.com/EXT/SMS/SterlingProducts.nsf/catalog/3811

    I got them from the rad onc's office. I would sort of wedge one under my breast and use a soft bra to keep it in place all day. I don't know how I would have gotten through the last couple of weeks of treatment without them.

    Mary 

  • Juliebell22
    Juliebell22 Member Posts: 37
    edited February 2012
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    Thanks spinner! Ive been using aquaphor, but I may have to get some coconut oil. Geegster, the ones i use are VIGILON....www.bardmedical.com...18005264455. I love that they are 2 sided self stick, and you can put them in the fridge.  AWWWW sweet relief!

  • Juliebell22
    Juliebell22 Member Posts: 37
    edited February 2012
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    btw spinner, my dr is also a female, and was WONDERFUL! She gave me samples of exclair because its 100.00 a tube, and she told me there was nothing special in it that I couldnt go to a health food store and make myself. Samples didnt do much good, so i was happy i didnt spend the $ for a script, as I am uninsured!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2012
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    This is such good information that perhaps the Mods will pin it so it is found easily.  Why not send them a PM and ask?

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited February 2012
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    I will do that, thanks!

  • superfoob
    superfoob Member Posts: 121
    edited February 2012
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    Thanks for the links ya'll!

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited February 2012
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    Excellent!  And it explains why my pre-radiation instructions talked about creams to keep me more comfortable.  When my wounds got bad, they gave me Aquaphor, some Aquaphor-injected gauze and a special wound cleanser to use in the shower.  All was intended to reduce discomfort.  Makes perfect sense!

  • SusieMTN
    SusieMTN Member Posts: 43
    edited February 2012
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    I too wish I would have known the above information.  Great Post Spinnerpom !!!!!

  • Sherryc
    Sherryc Member Posts: 4,503
    edited February 2012
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    I have no complaints on my RO has he was also kind and compasionate and did spend time with me trying to educate me but this post is so clear.  Great information to share.

  • anne67
    anne67 Member Posts: 14
    edited February 2012
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    Thanks so much for this Spinnerpom.  Just finished reading the thread on creams and came away very confused. Your post clarifies things. Just finished 6 of 16 treatments.  I am sticking with my Fruit of the Earth 100% Aloe Vera Gel.  I will be trying some Lansinoh for my cracked irritated nipple though.  The nipple thing has been the worst part for me so far-am wondering whether anyone else experienced this and whether they used the Aloe Vera Gel on their nipples too or a different product.  

  • mrsnjband
    mrsnjband Member Posts: 64
    edited February 2012
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    I would be one of those with "missing skin,"  It took months for it to heal somewhat. My skin continued to break down that I ended up with skin that could not form new skin thus allowing infection to get it. The rest of  skin that was also damaged cause me much pain. 

    It finally became to difficult to live with, I finally had reconstruction. I'm still a little tight on the rads side but continue to improve daily.  I will so nice not to have so many issues with that side after almost 4 years. 

    Thanks for sharing that info, very informative. NJ

  • onvacation
    onvacation Member Posts: 521
    edited February 2012
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    Great information!  Thanks for sharing!

  • Sandlake
    Sandlake Member Posts: 108
    edited March 2012
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    I'll be starting Rads in May, this post has been so helpful!!  Thank you so much.

    Cyndi 

  • rlchar3
    rlchar3 Member Posts: 2
    edited March 2012
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    I am Day14 of 30 of radiation.  My rad onc is protective of what I put on my skin and prescibed a cream called Prutec.  So far so good.  But when I saw him this morning, he said my time will come and I should expect the redness.  This post is helpful in better understand and distinguishing as I too thought it was a burn.  Wish me luck as I approach the 2nd half of this treatment.  

  • TonLee
    TonLee Member Posts: 1,589
    edited March 2012
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    My RO said there wasn't enough heat in all the rads I took combined, (and I took a lot) to warm a cup of coffee.

    He agreed with most of this post.  However, he mentioned "residual" effects from rads causing my thyroid to stop working.....even though it wasn't hit.  And he was right.  6 months after rads, it quit working completely.

  • rlchar3
    rlchar3 Member Posts: 2
    edited March 2012
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    to TonLee...   if your radiation was applied to your breast why did your thyroid stop working?  

    I'm hypothyroid but was never warned about the above.   

  • TonLee
    TonLee Member Posts: 1,589
    edited March 2012
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    That's what I am saying Lucie.  He told me going in that half of the women in rads have thyroid trouble afterward, most of those in the first year.

    He called it "residual."  I did have superclav rads...close, kinda to my thyroid....but not hit.

    Said most women blame hypo symptoms on chemopause, tamox/AI....but he tests thyroid at least once a year for five years....in my survivor's group about half of us had our thyroids stop working.

    My RO said the thyroid is "sensitive" to radiation and one of the residual problems with rads is it quits working or slows.  Maybe due to scatter? 

    Now I'm wondering if he said one thing and I heard another.....I'll ask for clarification next time I see him.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited March 2012
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    Spinnermom, great article, thanks for posting.

    TonLee, I just did a pub med search and found this article on hypothyroidism and radiation for breast cancer:

    Dose distribution in the thyroid gland following radiation therapy of breast cancer-a retrospective study 

    Looks like it happens primarily with women who have supraclavicular radiation and also who have smaller thyroids to begin with.  It appears that with supraclavicular rads part of the thyroid is radiated.

    Some selected snippets from the article:

    The association between RT and hypothyroidism in breast cancer (BC) patients has been investigated in only a few studies [12-16]. On the other hand, radiation exposure to parts of the thyroid gland seems unavoidable in BC patients receiving RT to the ipsilateral supraclavicular fossa. Joensuu et al. [12] demonstrated that 17 of 80 patients (21%) had developed thyroid hypofunction 7 years after postoperative loco-regional RT for BC. Bruning et al. [13] concluded that hypothyroidism was significantly more frequent in BC patients who had received irradiation to the supraclavicular lymph nodes compared to non-irradiated BC patients. 

     ..................

    We concluded that patients with small thyroid glands are at particular risk to develop hypothyroidism after radiotherapy for breast cancer, as less tissue with radiation doses less than 30 Gy is available for sufficient thyroxin production. Further investigations in larger cohorts are required to confirm our results. 

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited March 2012
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    I find the thyroid thing interesting.  I'm not sure I'd jump to a causal relationship to the radiation, however.  Thyroid problems often surface in the perimenopausal years. In addition, some women may not have been monitoring their thyroid function and therefore may have already had an undiagnosed issue.  Finally, I wonder if there is an auto-immune response to the radiation that might trigger Hashimoto's thyroiditis?  I've been researching this and I'm not finding much in terms of causality.  In fact, even on this site it states that there is little risk of even superclavical radiation causing thyroid supression, especially so soon after treatment.  There IS a link between chemo and thyroid function. however.

  • elimar
    elimar Member Posts: 5,885
    edited March 2012
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    The fact that so many women have "learned" a lot about radiation from the reposted article above is just an indictment that so many of us have gone to RO's that were very poor in describing our treatments to us.

    Now if we can find a RO who will fess up and demystify why many of us report reflux and esophageal burning... 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited March 2012
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    Thanks, Spinnerpom. That is exceptionally well-written and empathic!

    I've been curious about a problem from my rads experience, with a question that wasn't discussed in the article and that is probably not all that common. I had IMRT rads to the left lumpectomy breast in 2002 with boost. Eventually the lower 1/6 of the breast turned hard and painful to touch, even though there is nothing to "see" that is different (because unlike what we consider "burns", rads works differently and exposes the tissue under the skin to treatment). Over time the area that was painful and hard spread upward as well. It is called "radiation necrosis" (basically, as gross as this sounds, melted fat, leaving hard tissue behind). My understanding is/was that the action of the rads exposure is not static and that it continued to "expose" over time, but that idea conflicts with what was said in the OP above. I'm not really sure. All I know is that the hardened painful portion of the breast went from being just the very bottom half over the years to being the entire bottom half over the years.

    It makes it difficult to tell whether or not there is any recurrence, in comparison to whatever is hardening the lower breast and making it so painful to the touch.

    A year after I completed treatment I spent the money to travel back in the Lower 48 to the radiology center where I had been treated, to be seen by the radiologist who had prescribed my treatment originally. It just happens that person was also the chief of the brand new rads center at the time I had been treated. The radiologist told me it was unknown what the hardened area was, and preferred to recommend an MRI. The rads doc admitted to being less familiar with reading ultrasounds personally, which was fine by me. But my breast surgeon was located 2 states distant in Seattle. So by my request, the rads doc ordered the MRI to be done in Seattle for my surgeon to review. I traveled to Seattle. My surgeon told me that he suspected it was "radiation necrosis". The MRI was done, and an accumulation of fluid indicated he was correct. The accumulated fluid was fatty fluid (oil). The MRI results were provided to my rads doc.

    I do not know why it happened, nor do I understand at all why my rads doc didn't mention what it might be. I have no solution for it. My surgeon drained the accumulated fluid. It is still painful.

    As a final note, I did and do think my rads doc was a caring person with good intentions. I remain puzzled by it all, however.

    AlaskaAngel

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited March 2012
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    AA, what you are describing sounds like what I was told could happen to my newly fat grafted breast that is currently being radiated. Frown  I was told I could experience either liquefication (fat turns to oil, like you described) or fat necrosis (it's gets a hard as a rock/wall) and that since my graft is new and has not fully developed it's blood supply yet, I am at higher risk of this happenning.  Nothing can be done to prevent it (aside from not doing rads, of course Tongue out...we make hard choices to reduce our recurrrence risk).  It is just luck...or unluck, rather,...of the draw if it happens.  The jury is still out on whether this will happen to me or not.  Only time will tell.   I'm sorry to hear this has happened to you.