What to expect from treatment and ways to cope with side effects.
Posted on: Feb 27, 2012 11:10PM
I found this on another site and thought it was worth sharing here. (Talk amonst yourselves.)
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.
Posts 541 - 570 (607 total)
Jun 29, 2016 09:40PM Kathleen21 wrote:
Can anyone comment on nipple reconstruction post radiation? My plastic surgeon said it was not possible to reconstruct a nipple on radiated skin but I am reading many posts who seem to have had nipple reconstruction after radiation.
Thank you for your help.
Aug 13, 2016 12:46PM kaceyr0423 wrote:
Hello everyone, I have just been told that chemo isn't an option with an oncotype of 20. My case is a bit complicated because I have a very active case of Lupus. Rad Onc said radiation will be very dangerous...connective tissue problems as well as risk of lymph edema, even though only 4 lymph nodes removed and all 4 were negative. She is willing to do it, just made me sign extra waivers and wanted me to know it's extra risky. My problem is they have scared the ever living hell out of me and now I don't know what to do. I'm on hormone therapy, (just started yesterday) and was actually hoping for chemo,because I felt that would be less dangerous than the radiation, and I was told by my rheumatologist that it would also help my Lupus. The Oncologist made the decision without me, and pretty much said sorry about your luck, it's not an option......however, 2 weeks ago she was all about chemo (before she had the oncotype). I have been reading a lot on the discussion boards and there are many cases where chemo was done with a 20 oncotype, so I'm just wondering why the change of heart all of a sudden? I was told by the radiation doc to go back to the surgeon and have a mastectomy (after already having lumpectomy) and then the Oncologist also hinted at this as well. I didn't have one because the surgeon assured me it wasn't necessary. Why, now, after the fact, would I go back and do it??? So now they are taking the let's just watch it approach...and I am absolutely not comfortable with that. What would you do??
Aug 15, 2016 07:24PM sarahrae wrote:
I would def get a second opinion. My path report looks very similar to yours, my onco score was 24 and I was strongly encouraged to have lumpectomy/chemo/rads/hormone therapy. I was hoping to avoid chemo and possibly learn about potential trials and other options, so I went over to duke for a second opinion. The MO there had the very same recommendation for me.
I am a little shocked that you would not be rec'd chemo, I was surprised to find out that the chemo only reduced my recurrence rate by 4%, my MO said that she strongly recommends it even at just 1% reduction.
There may be very good reasons they aren't rec'ing it for you, but either way a second opinion can only help.
Obviously you could ask for some clarification from your current docs, but you may ultimately feel more comfortable with a different MO. I switched MO's simply to have better communication, I think that it is important to have someone that you gel with as you will be working with them over several years.
sending hugs and thanks for sharing!
Aug 15, 2016 10:30PM Isshin1heart wrote:
I start rads next Monday. My RO is very empathectic. She has stated that she will be extremely careful to protect, you lungs and heart. I have pulmonary fibrosis already. Partial mastectomy and sentinel node. Clear margins and no lymph node involvememt. I have very rare type called tall cell variant papillary carcinoma. Left breast. Stage one
Aug 16, 2016 12:55AM Mariangel43 wrote:
Spinnerpom, thank you for your valuable information. I just recently joined this site to learn and be prepared for what is to come. I am scared and I wish not to be, of the process. I have many doubts myself and the RO that is attending is not an accessible person. What I have learned comes from people who has passed thru the therapy.
Can you explain me why on earth do ROs continue to irradiate the skin even when the burn is visible? Why the protocol establishes 35-40 doses? Why don't you divide the radiation dose so you can finish when the burning of the skin is visble. In one of the patients' video I was seeing they used a gold mesh to cover the area to be irradiated "to distribute evenly the heat". The girl had a mastectomy on one breast but the mesh was applied on both. In my case, the left breast didn't show signs of cancer (MRI, PET/Scan, mammography, sono-mammography, etc) so I won't let any of the team do that on both breasts. I went to receive therapy for a breast with cancer, not to increase the probability to get cancer in the other breast.
The PS told me that there is a possibility that the implant may get damaged with the irradiation. If the skin is damaged I will need to have a skin graft from another part of my body. That would mean another surgical intervention in this year (five on a row) and I am starting to hate this journey.
Can you give me some news so that I can go there with a positive attitude and comply with most of the instructions? If I don't believe in a procedure, I won;t cooperate with it. I was preparing myself to stop the RT when the burn would begin to turn brown. As you clearly said, products for thermal burns do not help with radiation burns. Please help me since I rejected chemo and what I have seen and heard is making me also reject RT. The cancer was excised with the breast (clean margins). The only problem is that I had a one lymph node positive for cancer. Also PET/Scan showed activity in supraclavicular lymph nodes. I don't want lymphodema to develop in my right arm and the RT to the axilla increase the chance.
Aug 16, 2016 01:37AM Mariangel43 wrote:
To Kacey0243, for the information you offered, you have some conditions to deal with. Whether chemo or RT, they should weigh benefits against drug side effects. Maybe in your case the side effects outrisk the benefits and that is why the RO and the MO counsel against it. Anyway, I asked my MO to talk about the drugs used in chemo and I didn't like the temporary and permanent side effects of them. You may too and check on the interactive and adverse side effects of these in lupus. As in sarahrae's case, my MO decided to change his opinion regarding chemo from no-chemo to yes-chemo because I have positive lymph nodes (two in the supracavicular area and one in the axilla). I was furious with him because the score didn't change. The thing is that I am totally adamant to receive it. I have a score of 26, in the intermediate region of the Oncotype graph, and a new MO I was sent too for a second opinion told me she wanted to make a new analysis (this time is Mammaprint) because this one has low and high scores, no intermediate ones. I told her she could make it but I wouldn't change my mind about chemo. The Oncotype graph only shows approximately an eight percent (8%) decrease in the probability of getting a recurrence with chemotherapy (in my immediate future, I will make the interpolation to calculate the exact percentage). Anyway, I am not ready to go thru a whole, not even partial chemotherapy, because chemo has strong side effects that I cannot deal now because I am 66 and working with a foot fracture and osteoporosis. I need to be as strong as I can get to reduce the risks of falling or fainting while on therapy. To help me decrease the percentage of recurrence, besides hormone therapy, I will make changes in my life (less stress and good food and exercise) that I need. Hope you have made the decision that is best for you.
Aug 16, 2016 01:43AM Mariangel43 wrote:
Kathleen21, I was talking to my PS on last Friday and consulting with him what would happen if RT damage the implant and the breast skin. He told me that he would use a skin graft from another part of the body. However, he would not use damaged skin to make the breast reconstruction. I will ask him details when I go to my next Friday visit.
Aug 16, 2016 03:51AM ChiSandy wrote:
I am 65. My Oncotype score was 16--“low” but not super-low. Adding chemo would have reduced my already-low risk by only another 1%, 2% tops. (Barely a year of overall survival). My MO said the risks definitely outweighed that slim benefit. Chemo’s effectiveness depends on how fast-growing your tumor cells are (which is a major factor for which they test in the various genes in your tumor sample). Strongly ER+ without HER2 overexpression, and a low mitotic rate (1, which means slow-replicating) regardless of whether your Nottingham score makes you Grade 1 or 2, means that your tumor cells would be affected less by chemo than would your normal cells.
Yet there are women here who had Oncotypes of 20, and took further tests such as Mammaprint that pegged them as high-recurrence-risk, so they went ahead with chemo. One or two even had 17, still the top end of “low,” and chose chemo because they were young and tumors are more aggressive in younger women.
It basically depends on your age, general health (other diseases, or “co-morbidities”) and personal needs (e.g., a musician or surgeon could not live with neuropathy from certain chemo drugs but other patients might be willing to). If you fall into the dreaded gray area and don’t necessarily want chemo “no questions asked,” ask for further testing and get second (or third) opinions. Be wary of an MO with either a very high percentage of patients either getting or not getting chemo at the low end of “intermediate" (or who refuse to order Oncotype at all--their own personal preferences and resistance to change might be in conflict with the latest standard of care, or they might be considering their own financial interests).
Oct 21, 2016 02:25PM - edited Oct 25, 2016 03:54PM by Moderators
When I began radiation, my oncology nurse recommended that I purchase a single sling, new to the market, to protect the underside of my breast. It was fantastic! I am still devoted to my sling, but I find that my friends who have recently been diagnosed with breast cancer do not have knowledge of this device. It is worth sharing what I know.
The sling buffers the harmful effects of constriction on radiation damaged skin and allow sthe area in question to breathe. With its unique structure, the sling allows the skin to breathe as it is lifted off of the ribcage while wicking away perspiration preventing sore skin-to-skin contact. This deflects some of the tissue damage and, when the damage does occur, it allows it to heal more quickly.By the time my radiation was completed, my skin was a bit pinker than it had been previously, but it was neither sore nor broken. I realize that skin types vary, but I know the sling made a huge difference in my comfort. Now that my radiation is in the past, I still wear the sling to sleep every night to prevent perspiration from accumulating beneath my breast. Now I no longer even have a mild rash to contend with!
Oct 23, 2016 01:18AM Mariangel43 wrote:
Recovered, hi. Are you talking about the common sling used to accommodate the arm in fractures? Is it a special sling you are talking about? Please enlighten me.
Oct 23, 2016 03:58AM ChiSandy wrote:
I looked into those slings, and they didn’t come in a large enough size. Turns out I didn’t need to do anything special clothing-wise anyway.
Jan 23, 2017 07:58AM roche wrote:To rad group-hello I am in a gray area where choice of follow up lumpectomy treatment of rad or hormones or both is up to me. The RO certainly didn't prepare me for the many side effects I'm reading about here. He suggested Canadian shortened rad, would have some tanning, maybe some shrinkage or enlargement, no cosmetic difference afterwards. Didn't describe the se that so many of you have experienced. . I'm seriously feeling he was sugar coating the treatments and wasn't being straight forward. So now I'm considering just trying hormones. MO said with my path I could choose either or both. He said it Wouldn't change life expectancy. My tumor wa less <1cm, stage 1A, grade 1, neg lymph gland, no Chem necessary, and the surgeon never ever mentioned a mastectomy. Now I'm faced with choosing a treatment on my own and after reading about rads here,I am more confused and stressed than ever. Has anyone been in my situation and have had to make the choice? Does facility, equipment, RO/tech experience or lack of it influence so many different treatment outcomes? Thank you for any feedback. Roche
Jan 23, 2017 01:27PM Hopeful82014 wrote:
Roche, the Canadian protocol might be a good choice for you; I know many women have been pleased with how well it went for them.
As to side effects - I needed the full monty - 35 treatments, including the supraclavicular nodes, axillary nodes, you name it. It wasn't fun but I did NOT have any major problems. My skin never burned to the point of peeling, for example, and I didn't need any RX pain relievers or ointments. I did develop radiation fibrosis, which PT and drugs have resolved. My RO told me before hand that I would do well, and she was right! This may not be your experience, but I want you to know that not everyone has awful side effects.
You might do well to get a 2nd opinion consult from another RO in another practice; I did and it was very helpful in making the decision to move forward with RT with some degree of confidence. Reading up on the Canadian protocol might be helpful, too.
Mar 12, 2017 05:48PM CeliaC wrote:
Sling Info - see website Lots to Live For - they sell adjustable single slings, double slings and pads to help "cushion" area under breast from rubbing against skin. I have been using a single one and it does seem to help.
Mar 12, 2017 05:57PM - edited Mar 12, 2017 05:58PM by CeliaC
Mar 25, 2017 08:20PM CeliaC wrote:
Janet - You are almost there! I made it through 20 sessions (last one was 3/21/17) and no burn. Only having a little bit of fatigue. Best wishes for your radiation journey!
May 10, 2017 11:12PM Earlymorn wrote:
I have just read your post and about to start a course in rads. I am interested to know whether you have experienced any side effects of your radiation post-rads. I have read of others experiencing cords and skin thickening sometime after radiation
May 11, 2017 01:07PM CeliaC wrote:
Earlymom - No problems with cords, skin thickening or lymphedema (knock wood) to date. Fatigue was probably the worst side effect experienced and is also a very common side effect - last treatment was 3/21/17 - fatigue has now "lifted." Had some loss of appetite as well - but, trying to eat better & lose lbs., so not really bothersome. Jump into the various Starting Rads topics to see some kindred spirits. In the May one, there is a rather lengthy post by me with various info on Rads. Please also feel free to PM me, if you wish. Healing thoughts & gentle hugs.
May 11, 2017 09:11PM WenchLori wrote:
Earlymom, I had 28 rounds and the worst for me was the skin under my arm melted away. BUT, I firmly believe if I hadn't used a heavy petroleum product like A&D Ointment or Aquaphor at night I would have had less skin problems. I had 13 lymph nodes removed on 7/6/16 and no signs of lymphodemia so far. Keeping my fingers crossed! I also had problems with fatigue and some days if I overdo it I take naps to catch up. You can do this! We are all here to help you through every step of the way. You can also PM me anytime you need to.
May 13, 2017 03:06PM klrsar wrote:
Thank you! My RO said basically the same. He suggested, and I used, cornstarch to keep the affected areas friction free and dry. It did sooth. As for the "after itchiness", I also used my cold packs from surgery. I also canned the bra and found a very comfortable lounging bra that came up high under my arm ( I NEED support). I am glad this portion is over and now on to the next phase. 10 years of Tamoxifen...:-)
Aug 11, 2017 05:39PM - edited Aug 11, 2017 08:45PM by MollyW
103 - My thoughts exactly!!! Missing skin...
I had to take a leave of absence from work during chemo (AC followed by Taxol has done a number on me). I had hoped to be able to return to work during radiation, but after reading some of these posts, I am beginning to wonder. I must wear business attire so a bra and nice clothes is a must. I also have very fair and sensitive skin. Any advice? Is this doable?
I also noticed people discussing fatigue. How does this compare to chemo fatigue?
I may qualify for a clinical trial of stereotacticablative radiation for the one met in the lumbar portion of my spine (radiation to my breast would still be traditional radiation). Anyone have experience with this type of radiation? From everything I have read online it seems like something worth considering. I have a follow up appointment with the RO to discuss further, but it sure would be nice to have feedback from people with firsthand experience.
Aug 11, 2017 06:56PM Castigame wrote:
I am done w 8DD chemo and 11 out of 30 zappings done as of today. 47 yrs old
About rad fatigue vs chemo fatigue.
Chemo fatigue was longer in duration, stronger, and predicable. I knew I was going to be out of commission for four straight days non stop after each chemo
Rad fatigue is unpredictable and daily. Today, I ran a simple errand after rad. Got in my car when it came. Luckily driving distance was only a few miles from home. I exercise everyday but I need a nap daily.
Here is my suggestion if you choose to work during rads. Get some sort of cooler to carry organic aloe gel (no alcohol) and about 3 or 4 good size gauze pads. Throughout any day, pour aloe over the gauze. Dab all over rad area. You need to air dry for few seconds. If cool aloe gel is not possible, you just pour aloe in travel size container and carry in your pocket book, Cool aloe gel dabbing 4 times w nightly Eucerin plaster at night has been my routine for me and my skin is holding good so far.
Nov 13, 2017 10:38PM 53nancy wrote:
Thanks for the useful suggestions, everyone. I start 16 rads treatments on November 20th, and am dreading the possiblity of burns.