A rad onc weighs in on radiation "burns"
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Thanks Dancer!
So I called my RO for clarification today. He just called me back. When I asked him about the "residual" radiation he mentioned when educating me, he clarified my understanding.
He said BC radiation does not stay in the body, but occasionally (tho it is getting rarer with better equipment) there is "scatter" which can affect other areas of the body. (Which is why, despite technology, med techs still leave the room when someone is being radiated I guess scatter used to be a real pain in the butt....) This was what he referred to when talking to me about residual radiation...not residue left over, but scatter.
He also assured me my thyroid was NOT hit or in the field at all during rads. (I already knew this but wanted to be sure.) But surmises it was close enough that even a little bit of scatter could have taken it out. ..
I was already hypothyroid at the beginning, and my ENDO watched my levels monthly....and still does every two months or so.
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That makes sense TonLee. Glad to hear it does not stay in the body. I think I've experienced slight "scatter" to my other breast - very, very minimal, but a few small bumps popped up that were never there before. It's not 100% perfect, but we can be thankful it is MUCH better than it was years before.
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Thanks dancetrancer, for that explanation. I do think it is unprofessional that my surgeon knew 9 years ago what it was, but the rads doc didn't. It contributes to my lack of confidence in crisis specialists, because they tend to only deal with the patient situation at the time of treatment, which is why so often they are in denial about anything and everything else at the time they sit on the tumor board to make such limited recommendations in the blind.
I still don't have a clear understanding of how rads works in terms of why the rads necrosis so gradually spreads (and probably will continue to spread for me). Or why it only affected the lower half, unless the lower half had a different circulation than the upper half.
Another experience that was interesting to me was when, as part of my personal preference for increasing my vitamin D, I spent as much time without much clothing on in whatever Alaskan sunshine I could get right from the time of diagnosis, including sunlight on bare breasts. One day I looked down at the lumpectomy breast and was amazed to see a distinct pattern on the breast of red spots in scattered shapes in a circular pattern. I realized (from having seen numeruos patient mammograms over time) that what I was seeing was the surgical clips. The red skin spots faded pretty quickly. The next time I saw my surgeon and we went over my mammogram, I saw the identical pattern of clips. So I told him what I'd seen. He didn't accept it, but I have no doubt about what it was myself.
A.A.
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AlaskaAngel,
This is a couple steps away from my field, but I have a basic undertanding of it.
When your body is hit with therapeutic/medical radiation, the high energy particles smack into your cells creating very reactive molecules. These reactive molecules are actually what cause a lot of the damage. There is diffuse damage that is ongoing from the reactive molecules even after the radiation itself is no longer present (you are not radioactive). That's why they don't want you taking high-dose antioxidants during radiation - those horrible reactive molecules need to do a lot of unfortunately completely-unfocused damage, including to DNA. Normal cells can eventually somewhat repair themselves after such a huge insult, tumor cells can't.
Even the process of a simple surgial incision's healing is not over as soon as the wound is closed. The incision usually is at first skin colored, then gets dark pink and thick, so that you feel it as a firm cord in the surrounding skin. Then it fades and becomes soft, and eventually, if you're lucky you get a thin, flat white line. That can take about a year. Healing of a complicated bone injury goes on more than a year. Healing isn't simple, it always involves inflammation and building up, then breaking down, then building up again.
So healing from what is a massive radiation injury can take quite a long time too. There are all sorts of structural changes as a result of those reactive chemicals, and recovery from those can go on for 12-18 months. Sometimes in that process of healing, things end up seeming worse than at the time of the injury. Tissues stiffen. Inflammatory cells turn dead material into liquid.
That's probably more basic of an answer than you want. But it's not something I understand well enough to be able to put into words well. Wish you had my rad onc. Actually, I wish everyone had someone as kind and willing to answer questions.
I had a BMX, and I can feel the darn clips through my skin. My BS told me she stopped using them shortly after my procedure - technology had progressed.
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I have been struggling with the question of whether or not to do rads. I was referred by my med onc to the rad onc in my medical complex. He was way too busy to spend any time at all explaining anything. All he did was try to scare me into doing it by saying well it recurs in the chest wall or nodes within the first two years, and cited some study that said lymph node burden really was the prognostic factor.
Originally my med onc said just the underarm as I had only sentinel node dissection. This guy wanted to radiate my chest as well. I had a complete mastectomy. No breasts and no recon. Then he was going to meet that week with the tumor board and would discuss my case and call me. I waited two weeks and then called my med onc. Then this bozo called me and said "let me know by Friday so I can schedule the mapping". Both times he was interrupted constantly and spent about a total of ten minutes talking to me. Let him know by Friday? I wasn't buying a used car.
I went for an independent second opinion with a woman rad onc at UCLA who specializes in breast cancer. She actually sat with me for at least an hour and had reviewed my pathology in detail. She was patient and explained why she thought rads would benefit me even though I was in the "gray area". I felt a lot more positive about doing it.
I asked my med on for a different rad onc. I will be meeting with him within the next week or so. I have been told he's a really kind man. So maybe I will get a doctor who actually cares to explain things. My med onc said that he thought underarm was sufficient. I will see what this new doc has to say.
I have been following the conversations on various threads regarding radiation or no radiation - many of you have been struggling with the same decision. I'm grateful to know that I'm not alone.
Kathy
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My PS delivered his message much in the way this RO delivered his/hers. Very empathetic, what to expect, how long treatment could last (2 yrs), issues to expect, complications that would happen, invitation to educate myself on the internet but to ask him about what I found not to take it for fact, open communication, compassion and weekly discussions about progress and what is next. He really put my mind at ease by setting my expectations, letting me know it would not be perfect, but a long work in progress. He promised me that if I had patience in the process he would work with me for as long as it takes to get the results we want.
I just want to say doctors like this are GEMS!!!
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Kathy - I struggled REALLY hard with the decision to do rads. I had a BMX with close margins (DCIS < 1 mm from the margin on the L). If you had good margins after your BMX, I too question why you would need rads to the chest wall - BUT - I am not sure how having a positive node changes that, if it does. Did you ask the UCLA RO about whether she thinks you need chest wall rads or not? Do you know how big your margins were after your MX?
I can understand why you'd need rads to the underarm, given the positive node. I wonder if it is also possible to have further axillary node dissection as an alternative - I don't know that that is better (lymphedema risk with either), but it would be a question I would look into.
I had 3 RO opinions before I decided to proceed with rads. It's important for you to feel comfortable with your decision (as much as any of us can be with such decisions). It is also extremely important for you to be comfortable with your RO and find one that will be able to answer your questions and not blow you off. You are absolutely right in searching for someone else. The first RO obviously needs to work on his bedside manner and remember that we are REAL people, who deserve time and attention, not just be pushed through the system like we are on an assembly line. I hope your new RO is kind and spends time with you!
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Chatsworth
I too am facing the same dilemma about deciding to have RADS. While the RO was very nice and all, she also said that she felt that if I were to have a reoccurance it would be at the original site. But I said her her, the site is gone via my MX. My tumors were centrally located behind the nipple and yes there was DCIS affecting about 1/2 of the breast but foward to the nipple if that makes sense. The chest wall and nodes were clear. As a matter of fact my margins were fantasic. 17mm from the tumor site and 11.2 from any DCIS! She did say she would reveiw it with the "tumour board". I'm presently having my TCH TX and a decision will have to be made I would think around the end of April 2012. She's going to have to show me some pretty compelling evidence that the benefit outweighs the risk for me to consent.
My surgeon and the MO are both of the opinion that its really up to me. I know there no RO's but they've been around long enough I would think. The MO is the Head of his department and I am super comfortable with him.
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MLB,
I don't understand why they're considering rads for you....you are node negative, clear margins, and had a MX? Are they giving you any reason?
I haven't found any research saying rads is beneficial in MX, clear margins, with no nodal involvement. It's why I had a MX because I didn't want rads (ended up having it for positive nodes). A new study came out last year that shows a def. benefit if one node has cancer in it tho.
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Have you guys checked the NCCN guidelines for what tx is recommended for your tumor characteristics? Scroll down for "breast cancer". You have to register but it is free. The professional version is what you want to look at.
I also recommend you read this article:
Here's part of what they say in the discussion:
The Panel found that the weight of the evidence from randomized trials was sufficient to recommend the routine use of PMRT for patients with four or more positive axillary lymph nodes. It is much less certain that the benefits of PMRT are sufficient to justify its use in most patients with T1/2 tumors with one to three positive nodes. The available evidence is insufficient to make recommendations for this subgroup. Further randomized trials (such as a recently opened intergroup trial in North America) are justifiable for this subgroup of patients. There are few data from randomized trials for patients with T3 or locally advanced (stage III) operable cancers, but the evidence from retrospective studies is sufficient for the Panel to suggest that PMRT be routinely used for such patients. While the consensus of the Panel was to suggest the use of PMRT for most patients treated with neoadjuvant systemic therapy, the Panel could not find sufficient evidence to determine whether all patients should be irradiated after neoadjuvant systemic therapy.
These guidelines were issued in 2001, and I don't think a new set has been published, so you will want to check the NCCN guidelines to see if anything else new has been recommended.
MLB, I agree with TonLee. You have had a MX, had clear margins, and are node negative. I have not seen anywhere where rads is indicated in that case...I'd ask your RO for the data/research to show that it is indicated. Perhaps there is something new I haven't seen.
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Oh and Ton Lee thanks for pointing out the new study about it being beneficial when one node is positive. Perhaps this is why they are recommending chest wall rads for chatsworthgirl.
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My surgeon didn't think I needed any radiation and certainly not chest wall because he said he got it and the margin to the chest wall was clear. He also stated that chemotherapy kills the cancer cells in the nodes as well as everywhere else in the body.
My med onc didn't think I needed chest wall. and he certainly knew the pathology. All margins were good - can't remember exact numbers - and the deep margin which is to the chest wall was 2mm. I know this is small but apparently when they go to the chest wall there is a fascia and then muscle so it if there is nothing left in that much margin then it is considered good.
The bozo rad onc wanted to radiate chest wall and underarm. The second opinion rad onc said due to the fact that I didn't have axillary nodes taken that the radiation to the under arm would probably get whatever remained of the cancer cells in those nodes, hence the reason for rads. However, she said that due to my stats I was in the gray area and it would ultimately be my decision.
Yes I could go back to have more surgery but I would have to do the radiation anyway. According to the med onc radiation is routinely given even with axillary dissection in order to kill off whatever remains in the nodes not taken since they never take ALL your nodes just a sampling.
So I would very likely have lymphedema. Since I only had SND if I had radiation, according to the UCLA doc, then my chance of getting lymphedema is small. Personally, I would rather just do the radiation and not go through surgery again.
Apparently, according to the med onc, the new thinking is that radiation confers additional benefit even in women with no nodal involvement. Crazy to me but I have looked at a lot of the women on these forums who had no nodal and got radiation so I guess it's true.
If the new rad onc is as good as I have been told, and if he answers me honestly when I ask him questions, I will be able to make a final decision. I printed out the studies that were posted on one of the threads about the dangers of radiation to the heart and lungs. I will be bringing those with me as well as some other data.
Like so many of us here it's necessary to become very informed and ask questions so that we know what we're getting ourselves into. The bozo rad onc never mentioned that even with modern technology there is the danger of heart involvement. I am 70 so I already have a lot of mileage on this heart. I have already been through chemo and Cytoxan is also linked to heart damge. I read that the combaination of Cytoxan and radiation can be very damaging. So if I have already sustained some damage, however slight, to my old heart, I really want to avoid anything further.
The percentage risk of chest wall failure is 10% to 15% and that is general population. It's a small enough percentage that I would be willing to risk that rather than damage my heart.
It would be great for breast cancer statistics if I didn't die of it but died of a heart attack instead!! Not interested.
At this point I am willing to do the underarm becasue there is no way to know if more nodes were involved. I get that. So we'll see if the new guy is on board with the med onc and the surgeon.
I just wish all these doctors would get together, surgeons, med oncs, rad oncs or whatever speciality so our treatments could be considered by all rather than just by one segment of the medical specialty. There are so many factors that make up the treatment we should receive and all voices in the process should be heard.
I found it ridiculous that I have to run around to each one to discuss this. ALL ABOARD!!
Kathy.
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Kathy,
I refused axilla dissection because the risk of LE. And because at the time (even tho the rest of the country wasn't doing it much, my cancer center recommended rads to the axilla for even a single positive node).
Since I had a SNB and knew they were positive, and there was no sign of "gross" disease when the surgeon was in there, I decided to take rads to the axilla instead of having it removed. I'm pretty positive there was cancer in my axilla since the two nodes the farthest from the tumor (and closest to the axilla) were macro with LVI. The RO told me I have a 5-10% lifetime risk of LE with rads as compared to 50% lifetime risk with surgery.
This was all about a year before the study saying rads to the axilla (sans gross disease) is just as effective as surgery in 2011.
I'm aware of the study that came out last year showing a def. benefit for any woman with 1-3 positive nodes. As Dance posted above, until 2011 1-3 positive nodes were considered "gray" area. Now, no longer. Rads is recommended "standard" care for ANY positive nodes. This change was unusual just because it happened so fast...usually the literature comes out and it is two or three years for Cancer teams to really get on board and change care.
This study came out and ROs around here immediately made the change. It was pretty amazing.
Some women like to minimize the single positive node by saying it is micro mets, and I so understand wanting to do that. But as my RO says, cancer is cancer. And the newest research shows benefit to women with ANY pos nodes. And if micromets aren't a big deal, then why take chemo?
Oh yeah! To kill any stray cells!!
I also have a reduced ejection fraction from Herceptin. So I understand your concern about the heart.
Big decisions.
BIG!
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Tonlee
My question exactly.
Dancetrancer
Thank you for that link. While I'm in Canada so I'm going to ask my MO when I see him on Thursday if the same protocol is followed. Looks like it though.
chatsworthgirl
I agree with you on all of the various doctors getting together instead of us doing the run around to each specialty. I too have heart disease in my family and this is a huge concern to me.
I'm not trying to get out of any TX, believe me if I was I would have dropped chemo LOL! I think its overkill and as of right now 95% of me is not consenting to rads. If I have a re-occurance at the original site, I'll do it then. If I remember correctly by the stats the MO quoted, it gives me like 5% better odds that it won't. So based on that I would then have a 90% chance of no reoccurance vs 95%.
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Tonlee
Trust me if I had node involvment I wouln't hesitate to do RADs. My thought is if the chemo is supposed to eradicate any rogue cancer cells systemically and the "site" is no longer then I don't see the RO's reasoning in my case,
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MLB,
I'm with you. I wouldn't do it if I had your diagnosis.
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TonLee
THANK YOU! I find anytime I've discussed this I get the feeling that people think I'm nuts!!!
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Great info...Thank you..
I was one of the lucky ones too. My RO explained everything..in plain English so i could understand everything
All RO are not created equal!!!!
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MLB,
You're welcome. I know people don't like to give their opinions here. Sometimes that can be very frustrating. But I'm in 100% agreement with you (based on the info you've given here.)
Maybe people seem to respond oddly to you because they're wondering why rads is even on the table. It doesn't seem to be part of the "standard of care" with your stats.
I haven't met anyone on this board, or in RL, who had clear margins, clear nodes, got a MX and had rads. Until that study last year about 1-3 nodes benefiting from rads, lots of women like me CHOSE MX to AVOID rads....
I wouldn't let them cook me without some hard evidence to back up the benefit.
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MLB, I also agree with Ton Lee. I'd definitely be wanting some evidence, studies, national guidelines, etc. from my doc to prove rads was indicated if I had your path characteristics.
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Just out of radiation (34 or 35 sessions). During the actual treatment we were told every step along the way what to use or given a prescription. Also during my initial consultation it was about 1.5 hours total. Once a week after treatment we'd see the Director of the facility who is the head radiation oncologist.
From day one we were told to use Advanced Therapy Aquaphor. Then as the redness progressed I was given prescription for Silvadene. Once the area went to a "weeping" magenta red and very very sore, I was told to buy Domeboro. It is an astrigent. They are packets of powder, you mix with water and shake and the use sterile gauze to lay over the affected area for 3 or 4 minutes. You repeat 3 or 4 times in one sitting and do this 3 or 4 times a day. It sure dried the area out quickly. During the Domeboro phase, I was told to no longer use any cream or lotion and to wait an hour for it to thoroughly dry and use Zeasorb A/F powder over the area. A/F is antifungal and it is to keep any bacteria at bay during this time.
This worked very well. The doctor stressed that we were not to go off rogue and try solutions on our own. So, for anyone in radiation, check with your rad onc - try the above after clearing it with them. The last week OF radiation and the week after were very sore and the above helped tremendously.
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I was one who had no choice but to have radiation. The post from the onc rad is almost exactly what I was told. We were all given what to use every step along the way and told not to go off rogue on our own by using supplements or anything not approved by them.
From day one we were told to use Aquaphor Intensive therapy cream. Later a prescription for Silvadene was added as more redness and soreness set in. By about session 29, it really began to hurt, and the area became a "weeping magenta" color. We had weekly appts with the head Rad Onc and any other time we or the techs felt necessary. Once it hit that weeping wet stage, I was told to buy Domeboro paks. It is an astringent found in the ithing/poison ivy section of the stores (could only find it in Rite Aid/CVS). You mix it with water, soaked sterile gauze into it and lay on the affected area for about 3 or 4 minutes, and reapply the solution and do 3 or 4 more times in one sitting. This was repeated 3 or 4 times a day. When the area got to this weeping stage and we began Domeboro paks, I was told to stop all creams/lotions b/c that holds moisture. An hour after the Domeboro was applied, I was told to sprinkle Zeasorb A/F powder onto the area. It too can be found OTC and is used for athlete's feet. The A/F means antifungal and I was told it is so we do not get infection from any bacteria. During this time they recommended Advil or Motrin for inflammation and pain.
The above was what was approved by the facility I used and seemed to work well. If you are experiencing difficulty ask your medical staff about the above. For me and two others on the same rad schedule, we found the last week and the week following treatment to be the worst. After that the pain went away as fast as it came and the redness began to subside.
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One other thing - I was given the risks of radiation but as I said I had no real choice with my stats. The one thing I found the further I got into radiation is how especially individualized each person's session is. Before beginning I had a CT scan, they made a "cradle or nest" for my head to rest in to keep from moving during the session and all the data from CT scan gets turned over to their physicist and their dosimetrist whose job it is to determine the angles of the beam and for how long. Their job is to also ensure that you get the maximum amount of area coverage while avoiding organs. The tech told me that radiation is such an unbelievable individualized plan because of it. So what one receives is not what another having a similar diagnosis might get.
I never wanted or asked for any of this but as I am finding out, a LOT of cancer treatment and how they go about determining your plan is pretty fascinating.
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Thanks for this post. 2 years out, and still itchy and dry. I still use coconut oil and aloe vera.
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Before starting rads, Oct. 2010, I did some research and read about the radiation protective effects of a melatonin based cream called Praevoskin Emulsion, made in Germany. I read several studies that convinced me to try it, and ordered it through anti-agingsystems.com before my treatments began. I showed it to my rad onc, who looked at the ingredients list and said I could use it, though he doubted it would do any good. But it did! He was amazed that my skin didn't even turn pink, up until the final week .. by then, I had run out of the emulsion. After that, my skin did turn a little pink, but very quickly went back to its normal color. After my own good experience, I recommended Praevoskin to several people but unfortunately I was told it is no longer available in the U.S.(though it is still available in Germany.) I have no idea why, but I think it's a shame, because it might help a lot of other women undergoing radiation treatments.
If anyone knows anything about this product, or why it's no longer available here, please clue me in.
Aza
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Tonlee and Dancetrancer
Thank you so much for both of your responses. I know people don't like to give opinions and understand why. It makes me feel better that you understand where I'm coming from! You know what they say, listen to your gut. Hell, that's exactly what led me down this path. I'm not trying to avoid further treatment for convenience sake, I've come this far by way of the MX and Chemo, Herceptin for a year AND whatever they're going to give me for the ER+ for 5 years. I am totally committed to all of it. It's just doesn't sit well with me to do RADS for a 5% better odds of no re-occurance and the possible SE's it could bring.
I will ask the RO at our next meeting for some evidence based reason why she feels its warranted.
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My thryoid decided it didn't like working real good 1 1/2 yrs after rads. Didn't surprise me. I've been tested all my life for thyroid function (the last 17 yrs annually, before that not as often because I didn't always do anuals) because I knew there was a potential problem - I had radiation to my throat after tonsils when I was 1 1/2 yrs. This was a common practice from in the 1930 - 1960's. It was supposed to prevent tonsils from growing back - WRONG - I'm 65 1/2 and still have my second set of tonsils. So did that radiation cause my thyroid to not like working, did rads for IBC (or even the radiation used for tests/scans) cause it, also lived not to far from where above ground nuclear tests were done in early 1950's or was it the combination of all? I'll never know and I don't care! I'm alive - taking a synthroid a day is easy.
If you had your tonsils out in that time frame, you might want to find out if you had radiaition done after tonsils were taken out if you can.0 -
Terrific discussion here, very interesting and mutually supportive! I want to continue the focus on those who are struggling with the decision-making. Yet I also think that cancer centers are only slowly starting to spend any resources on those who are fortunate enough to last after going through it, but have issues due to the treatment.
Thanks,Outfield, for additional insight into my question. I want you to know I didn't miss your response. I just want to provide some perspective to those who are wondering what happens as more time goes by..... the stuff that rads docs don't talk about, and don't seem to know. I agree that it takes lots of time to heal....
"healing from what is a massive radiation injury can take quite a long time too. There are all sorts of structural changes as a result of those reactive chemicals, and recovery from those can go on for 12-18 months. Sometimes in that process of healing, things end up seeming worse than at the time of the injury. Tissues stiffen. Inflammatory cells turn dead material into liquid."
.... BUT.... I am ten years out now and the spread of the hardening of the breast and painful area is continuing. In my own situation it has resulted in tightening that is pulling on the arm and shoulder, and even though I only had one benign sentinel node removed at surgery, and I did PT to keep frozen shoulder from being complete, my left arm clear down to the hand is having problems. I honestly don't know if this is common. But I also think long-term survivors do have issues from rads that are ongoing. So.... I'm reluctant to assure anyone that they aren't common, either. Because of the damage, In the past year I finally have had to give up my only source of income that is based on being able to use that arm. I went from being full-time to part-time to get by with it, and now can't continue.
I think in this discussion there still is not a clear answer as to just what rads does or how it works, because I would have expected it to heal at some point and stop advancing, and not continue to have more effects. I don't hear the answer to that in our discussion.
P.S. A side note - I had Adriamycin and Cytoxan with 5-FU at age 51 and have a fairly good EF (I do take CoQ10), and my bc was left-sided, for those with heart concern questions to consider.
A.A.
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MLB - to add to what Ton Lee and I have said - the NCCN guidelines (professional) shows on page 13 a flowchart which shows treatment guidelines for Stage I, IIA, or IIB disease who have had total mastectomy with axillary node staging. It says for negative axillary nodes, tumors < = to 5 cm, and margins > = 1 mm, no radiation is indicated.
Perhaps you could print this page out and take it with you to your RO to ask what it is about your case that makes her think you should not follow these guidelines.
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dancetrance
Oh I will be for sure, but thank you.. I read that the other evening (professional version) I'm a questioner and a numbers person by nature particularly when it comes to needless medical procedures, have always and will always be that way.
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