How many weeks of radiation?
Comments
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Numb you have exactly the same dx as me. I too had 4 Acs and still have 6 more out of 12 Taxols to go. So glad to hear your rads are what my RO just told me I will have. One of my biggest concerns was the side effects when they do 6 to 8 weeks but sounds like you didn't have any which is good. I am very pleased with 4 weeks of rads. I have to drive 30 minutes each way for treatment so doing it 5 days a week for a 10-15 minute treatment was not something I was looking forward to but to do it for 4 weeks is doable. So glad you responded, it gives me even more confidence in my RO who I was not too comfortable with. He did tell me 4 weeks was now the standard because the results are better and side effects less. Glad that US doctors are finally realizing longer isn't always better.
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beebs2704 from what I've read 3 weeks seems to be the standard in Canada and Europe too. I would not be surprised if the US gets to that standard too over time. I'm just glad they have finally gotten down to a 4 week standard. Can't tell you how many people I know that had 7 to 8 weeks of rads and were burned and had to stop for 3 weeks in between. Our health care system is in so much trouble and it's about time doctors have come to the conclusion that they too have to stop being so money hungry and do what they were trained to do and do what's right for the patient. I can breathe a little easier now knowing after chemo and radiation I should be done by mid February. At least I have a light at the end of the tunnel. I will be celebrating.
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hello everyone chattykat, I was diagnosed withTN in march 2016, also had 4 rounds of AC, 12 rounds of Taxol, lumpectomy in September and now getting ready for 6 weeks of radiation, a little nervous about the radiation but hanging on
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Lz999 good luck. 6 weeks a a couple weeks longer than what my RO is going to give me but I don't know other than TN your other dx. I've read to help prevent skin problems, to start using creams and lotions before you even start rads. Also Aloe is suppose to be very good. I've already bought aloe plants so I can use all natural aloe. The only other side effect seems to be fatigue. If you walk or do some type of exercise on a regular basis keep doing it because everyone says it really does help with the fatigue. If you don't do it, you might want to start. It doesn't have to be anything more than walking around the block. I wish you luck and please let me know how you do.
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I had my port taken out a week after my last chemo treatment. Leave it there for five years? Whatever for?
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I know, don't know why anybody would do that. My last chemo, I'm making sure my MO puts order in to take mine out. I have to have a mammogram after chemo, can't imagine having one with this thing in. Besides it annoys the heck out of me.
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ChattyKat, thanks so much for the reference. Interestingly, I am being seen by a RO who practices in one of the 21st Century Oncology facilities (the authors of the article you mentioned are associated with them, too), and so it really makes me very curious as to why he has me going for so many visits. Being the dark thinker that I am, I am wondering if my enrollment in a research study looking at the treatment effects of radiation may have had an impact. I spoke with the study nurse regarding the study's enrollment criteria and was told that treatment is not considered in enrolling participants, but you have to wonder if the RO is trying to gather data specifically on longer treatment. Maybe he wants a new machine, and to do this he wants to show how poorly his equipment compares in terms of side effects with those of other facilities. Who knows? Trying to not think like this, but when you haven't been told why one option was selected over another (one of the techs called to discuss my treatment plan after the simulation and I never saw the RO prior to when the treatments began this week), it is easy to have evil thoughts. I will let you know what he says when I have spoken with him next week.
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So, when I spoke with the RO he stated that he was concerned about potential side effects since I had undergone neo-adjuvant chemotherapy. I would be inclined to think he was mistaken and behind on the recent research, if he wasn't the one writing all of the articles the ASTRO site cites for treatment protocols!
I hate the radiation treatments, and honestly don't know how much longer I can cope with the daily torture. My total number of Gys in my treatment plan seems pretty extreme and so I am thinking I might just stop a bit early.
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Hi, All,
Just had my Radiation Simulation done yesterday, and am scheduled for my first treatment on 12/5/16.
I have entered a study where I will receive the 16 higher-dosed treatments. This appealed to me so much more than going through 33 or more days of treatment, in addition to the extra surveillance I will receive as part of being a study member. The Cancer Center where I am receiving treatments is ranked pretty highly among US institutions, so I feel confident entering the study group.
Can't wait to celebrate after the last treatment!
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Janniree57 Sounds like you are in one of the trials testing the 3 week treatment. I saw my RO a few weeks ago and he said I will have 4 weeks and 1 day (21) of radiation. Apparently that is the standard now although I told him I was going to ask for the 3 weeks. He said it will never get there in the US but I don't believe that. If it's just as effective with less side effects it will get there. In fact there are some already doing it as the standard. I will do the 4 weeks because that is better than 7 or 8 weeks and unfortunately there aren't any other RO's in the area so I would have to travel even further than 1/2 hour to get it daily. Good luck to you and please update us when you are done. Let us know how you faired with side effects, etc.
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Numbalina How many are you suppose to have? Seems for Stage IIa with 2 cm, you are getting a lot of treatments. I am triple negative which means there are no other treatments for me except chemotherapy and radiation. All of the trials had triple negatives in them but not to the point where they will say the 3 week treatments are safe for TNs. Although I haven't seen anything that said the ones with TN had more side effects or worse results than the others. Please try to hang in there. Did you get a second opinion? Maybe you need to get a second opinion.
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Amen, ChattyKat. 33 treatments, 25 whole breast and 8 boosts for a total of 61 Grays. I feel I am getting far too much radiation. The techs said it was the standard dose. Standard for whom, was what I was thinking. From what I have read, I am a perfect candidate for the hypofractionated treatment -- early stage and no lymph node involvement. Sigh. I did get a second opinion and he told me that I could do the shorter / stronger treatment. This prompted a discussion with my MO and primary who suggested that there was more data on the standard treatment and that this RO is a rock star, so go with him. I should have gone with my gut reaction (shorter treatment!), but I figured I would do the standard since the chemo basically did nothing to the tumor. Had I known how difficult the treatments would be (everyone has said they are easy to deal with), I clearly would have opted for the shorter course.
I have switched to Valium before each treatment. It seemed to help this morning, that and the fact that I told them they needed to do something about the posts on the table (they removed them). I have multiple BRUISES on the top of both arms near the elbows where the posts have been digging into my arms and cutting off the circulation... and making me crazy. Problem is I keep getting different techs. Some try to make the treatment less uncomfortable, and the others are basically sick of me telling them I am in pain and just shrug their shoulders.
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Numbalina so sorry you are going through all this. 33 treatments does seem like a lot especially for Stage IIa I wish there was somewhere where you could find the standard practices for radiation. When I first went to my medical oncologist for chemo she pointed me to NCCN.org online and showed me how to naviagate it. It was great, by the time I went through it I knew exactly how many chemo treatments I would have and what I would have. When I went back to her sure enough she told me exactly what I read. I've tried to find something like that for radiation but haven't had much luck. I think doctors just go by what they've done in the past but that's not the way to operate. Things change all the time. I wasn't too keen on my RO because everyone I met had 6 to 8 weeks of radiation but when I talked to him a few weeks ago he said 4 weeks and 1 day. He said that is the standard now. A higher dosage over a shorter period has proven to be more effective wiith less side affects. Maybe it is because chemo didn't do anything to the tumor. Why didn't you have a lumpectomy? That was the first thing I did. 2cm is not very big. Mine was 1-1/2 cm. I thought they do chemo when tumor is bigger. Well let me know how you make out. Hang in there, I'm sure it's not easy. Just shows you that you can read one thing but they do something else. You should complain about the techs if they are not helping you to make it easier.
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Hi all. I had a lumpectomy on Oct 27 and start rads on Dec 7. (Had the simulation session today) I have to decide whether I want to do 21 sessions at a higher dose or 33 , at a lower dose. The dr says 21 and 33 would both have same results and since my breast are pretty small , the 21 would be a good choice.I started wondering about whether the side effects- short and long term would be worse with higher amounts of radiation. Is there anyone that can speak from experience about this? Thanks.
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Lillymama how great that you were even given the choice. I am going to have 21 rads in January. I've done a lot of research on the 15 rads (Europe and Canada protocol) because I was hoping that my RO would offer it but sadly he won't do it. From everything I read the side effects are much less when you do the 15 rads. I know it sounds counter intuitive but for some reason it is much better. Personally I can't attest yet to the 21 rads but even some that have posted here on my line have said that they had no effects. Others that did not have the choice and had 33 are having or had a much harder time. Even my RO has said they have found at a slightly higher dosage but at a shorter period of time has proven to be just as effective with less side effects so the standard for RO''s that won't do the 15 day protocol 21 rads is much better. Obviously it is your choice but remember that 5 days a week for 6 plus weeks is a lot. I've read that using aloe after each treatment reallly helps so regardless of which you choose, get yourselt an aloe plant and look on u-tube o see how to get the aloe out I wouldn't add anything to it just plain aloe. It can't hurt tthat's for sure. Good luck and please let me know what you decide and how it goes.
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ChattyKat-
Hello and thanks for the reply.
I have decided to go with 21, as I have read a bunch more positive reports about it vs the longer, traditional method. I spoke with a new friend who went through bc three years ago. She told me aloe was her best friend during radiation. I asked my RO about it yesterday and he said he didn't like how "sticky" it is on the skin. He gave me some cream they prefer at the clinic... Chemical laden cream, that is... I will be getting some pure aloe to use, also.( or maybe instead of) It bugs me how there is so much we can do to help ourselves with natural products and foods but the medical community disregards it. 😒
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Lillymama good decision. Since I won't be starting until after you are done, please let me know how it goes. I'm sure you will be much more comfortable with 21. Since you put the aloe on after the treatment, not so sure why the RO would care if it's sticky. I really think you're right, unfortunately what they want you to buy is usually expensive. I'll stick to natural myself. Best of luck.
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Hi lillymama, I found aloe to be very soothing but not moisturizing enough. I've had bad skin effects, but my nurse said there's no predicting who will have a hard time. Maybe add Calendula cream?
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Hi ChattyKat - like you, I am stage 1a with no node involvement, but my tumor was much smaller, 0.6 mm. I've just started on radiation and will have 16 whole-breast sessions and 4 boosts. I've been told it's the shorter "Canadian Protocol".
I'm getting IMRT - which involves many individual radiation beams that deliver modulated doses that pinpoint areas in the breast-scape and increases or decreases the amount of radiation accordingly. Although a shorter treatment time, the results equate with longer treatments. And here's the kicker for me - because of the shorter time, I can expect less side effects. I've had 4 treatments so far.
I didn't ask for IMRT, it's just what my RO does. Often, insurance will cover the longer conventional 3D-CRT radiation treatments but not IMRT. I told him that my insurance company doesn't automatically approve IMRT and he said he uses IMRT no matter what the insurance company pays.
IMRT is considered new in the US. When I asked him what figures into treatment planning, among other things he told me, in the US, ROs were typically paid according to the amount of treatment sessions - unlike their Canadian counterparts. That's why it took so long to catch on here. I looked at him quizzically and he smiled and said he was salaried and the amount of treatments had no effect on his paycheck. I like this guy.
So that's what I know about the reasons for my treatment so far. ChattyKat, I wonder if your RO simply doesn't have the machinery that can do the shorter dose?
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Regan thanks for the information. I was prepared to put up a fight and try to get the Canadian protocol but my RO said he would not do it. Since he is the only RO in the tri-city area I live in, not much I could do unless I wanted to travel an hour or more and even then I don't know if they would do it either. I am going to have 21 treatments, which my RO says is standard now. So they do give a higher dosage but for a shorter period of time and the side effects are suppose to be less. My RO says the US will never go to the Canadian and Europe protocol but I have my doubts. You just proved that some are already adapting to the Canadian protocol and I've read that others have also decided to use the Canadian protocol. No reason for them not to when the results have proven to be just as effective. I think it comes down to money. I'm ok with 21 at least it's not 33 or more. Some women here are really having a hard time or had a hard time because of the length of time they had treatment. So I'm not so sure it's a matter of the equipment in my case but the guy has a monopoly and if he gets paid for each treatment why not 21 versus 16? Glad to hear you have a great RO that is willing to do it and that so far you have no side effects. Please let me know how it goes when you are done.
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ChattyKat - from what you say, our length of treatment is similar - which may mean that you are getting IMRT too. I think anything less than the traditional 25 or more treatment sessions and that uses IMRT can be considered "the Canadian Protocol". It's a wonder your RO can't explain it any better to you. I'll check back in a bit and we can compare our experiences. Here's hoping for smooth sailing
Anyone else out there want to chime in about IMRT and the Canadian Protocol?
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Hi
Since I am in Canada I thought I would weigh in on this topic
Originally before my lumpectomy my RO was stating 16 radiation treatments
after surgery because it came back as grade 3,with micromets in 1 lymph node and lymphvascular invasion was present I now will be doing 25 treatments.
I have the same RO as I had last year with my throat cancer, we did 35 treatments to my throat and I did very well had very few issues ( no mouth sores) and he told me this time would be easier .
Char
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Hi ladies, I am at 5/15 treatments completed. I was fully surprised to get only 15 treatments since most seem to be getting more. I did ask my RO last week why most aren't getting the shorter treatment in the U.S. He mentioned just what you said Regan, about doctors getting paid less for hypofractionated treatment. He also said that many times the shorter treatment involves more effort in planning and positioning to keep heart/lungs out of the field. My assessment of that is that not all Drs are skilled enough or care enough to try, especially if they are getting paid less! (My RO is salaried too).
So far I just have mild discomfort in whole breast and my nipple is really sensitive. My skin is doing fine. That could all change this week though...
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Charlene1 sounds like you've been and are going through a lot. I hope everything turns out ok for you. Keep in touch and let us know how it goes. Hopefully this time around you will be done with it.
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joyandpiece how do you feel having to go 5 days a week for the rads? I would imagine it's a pain to have to go every day. I'm not looking forward to it because I have to travel 1/2 an hour each way just to get to the clinic and back home. Let us know how you do.
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I start December 6, total of 33 treatments with now 8 boosts.
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Pammac47 I suppose when you are at a higher stage they have more treatments. Good luck with your treatments and I hope they go by quickly. Please keep us updated on how you are feeling as you go through this. Everyone here takes something from what others are going through and sometimes can help when things are difficult. Check back often so see if you can get some hints.
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chattykat and all, happy Thursday. So far I've got some minor breast discomfort, my nipple is sore and things are slightly pink. My skin is holding up well (so far!) but I am starting to be more tired. 8/15 down. Progress!
I have about a 30 miles/40 minute drive one way, so I can relate with those who have longish drives. I've paced myself with a few short Christmas shopping trips after treatment and occasionally lunching with a friend. Most of the time I just go back home.
I am thankful for my friend that has driven me a few times. I didn't think I needed it, but on Tuesday morning I was really tired and shaky, I wouldn't have wanted to drive.
Another piece of advice I might offer is to ask your techs to talk to you and explain what they are doing. I am not too proud to say that I had a bit of a panic attack on Monday when things didn't seem right and it was silent - nobody talking to me or in the room. It felt like everybody left for lunch and forgot that I was face down on the table. On Tuesday I asked them to please explain any delays for my own comfort. Surpringly !Voila! Since Monday I've become a real person to them instead of a lab specimen! I also call that progress
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Hi, I am about to start radiation next week. I am scheduled for 16 sessions. It used to be 25.
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I started I'm three treatments in got a bunch of x's covered with surgi strips and here's my thing I'm not washing off but those boogers are coming off with lotion. Was told to make sure those stayed ha!!! I am scheduled for 33 with 8 boosts so I guess I'm gonna get in a lot of trouble along the way since I can't keep my stickers on, oops
Pam
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