How many weeks of radiation?

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ChattyKat
ChattyKat Member Posts: 28

I was diagnosed on 6/16/16 with TNBC, 1.5 cm, grade 3 tumor in my right breast. Considering I had a mammogram 8 months before and there was nothing there, it came as a big surprise. I had a lumpectomy and lymph node biopsy on 6/29. My margins were good and no cancer in my lymph nodes. Stage 1a. I've had 4 treatments of AC every 2 weeks. That was horrible but I think it was the Neulasta they gave me to keep my white blood counts up that caused all the pain. I was sick most of the time. I am now on Paclitaxol on a weekly basis for 12 weeks. I just had my 3rd treatment this week and then had to have a shot a day for 3 days to build up my white blood counts. So far this treatment has been much better. I finish this chemo a week before Christmas and then will have 3 or 4 weeks off before I start radiation. Just wondering how many weeks of radiation others have had to endure. In Europe and Canada the standard is 3 weeks of a higher dose of radiation. The US has done clinical trials and found a shorter duration has less side effects and the results are the same 5 and 10 years out as having radiation 6 to 8 weeks which is what doctors in US do. Would like to hear from anyone that has/had stage 1a and how long they had radiation.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Hi ChattyKat and welcome to Breastcancer.org!

    We're sorry you have to be here, but really glad you found us. You're sure to get the answers you're seeking, along with great support and information.

    To help you get some better insight on what members' are experiencing with their radiation schedules, you may want to post your question also in the Radiation Therapy forum.

    We hope this helps, and that you get some answers soon. Thanks for posting and we look forward to hearing more from you soon!

    --The Mods

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Bumping for Chattykat -- can anyone weigh in with their experiences?

    Thanks!

  • reflect
    reflect Member Posts: 576
    edited October 2016

    I wanted to do the shorter version of rads too, but my RO said no because I had had chemo. I looked at the studies and I believe it has not been studied for women who have chemo. Curious what your RO will say. I'm not 1a so that might make a difference.

  • ChattyKat
    ChattyKat Member Posts: 28
    edited October 2016

    Reflect looks like you were Stage IIIA and had lymph node involvement. How many weeks did you have radiation? I've read on some sites where people my stage or stage IIa had 3 or 4 weeks (without higher dose). I'm asking because where I live there is only one RO in the tri-city area. I have not heard very good things about him and with no competition he can tell me I need more than I do just to make money (which I've heard he does). I'm more concerned with the side effects and they have shown the side effects are less with shorter therapy. Also in the trials they did have women who had chemotherapy but the numbers were too small to evaluate. I think they have done more trials on it though. Even so some doctors do go with the shorter therapy for women who had chemo. I will let you know. I've decided if I'm not happy with his response, I will go get a second opinion and travel and stay in another town if they recommend a shorter period. Thank you for responding.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited October 2016

    I had 19 rounds and it was so easy. No side effects.

  • reflect
    reflect Member Posts: 576
    edited October 2016

    Hi ChattyKat, I've just started rads and was told 5 weeks plus possible boosts. I'm guessing that's likely. I would run from that RO....he's really the only one in your area? Where are you? I live in a rural area and drive about an hour for rads, but there are a number of ROs at the cancer center, so I could have switched if I didn't like him. But it is mainly the techs you see (every day) ...only see the RO once a week I'm told. Good luck!

  • JJOntario
    JJOntario Member Posts: 356
    edited October 2016

    I am pretty sure I did 33 rounds of rads with 5 of them being boosts to the tumour site. I also used a bolus the entire time. I was doing well until about the last 2 wks ...it really wasn't easy...but a year later and my skin is great. The one complaint is the tattoo in the middle of my chest that my DH says looks like a blackhead..yay. I think I want to change it into a heart...

  • ClarkBlue
    ClarkBlue Member Posts: 170
    edited October 2016

    IMHO I would do as many as you can because of your recurrence and it's a very doable treatment. I've done 18 of 28 so far and have found it so much easier than chemo. I'm 2a with one positive lymph node. I had a double mastectomy as well.

  • ChattyKat
    ChattyKat Member Posts: 28
    edited October 2016

    I didn't have a recurrence. This is the first time. I just don't trust the radiation oncologist and feel he's in it for the most money he can make. He tells women they have to leave their ports in for 5 years and they have to come in every couple of months to get them flushed. Why because he makes money on it. I'm expecting that radiation will be easier than the chemo I had but that doesn't mean I want to be radiated more than is absolutely necessary. If I don't like his answer to how many treatments I will travel to get a second opinion. Thank you for your response.


  • ChattyKat
    ChattyKat Member Posts: 28
    edited October 2016

    Reflect thanks for your responses. I live in central Arizona. My town is rural but is next to 2 decent size cities. There is a radiation center in each city but he owns them. After I see him and find out his plan, if I feel he is over radiating, I will get a second opinion and travel to do it. It amazes me the differences between the stages, stage 1A had 33 rounds while someone with 3A with 30 rounds. Seems to me doctors do not have clear guidelines on radiation. When I had chemo I went on NCCN.org and it clearly stated the exact protocol for my stage, grade of tumor, no lymph node involvement, clear margins, triple negative. All based on the best outcomes of clinical trials. I cannot find anything like that for radiation therapy and that makes me nervous. Don't get me wrong if I found that based on my stage I should have 6 weeks of radiation, I would do it but I want to see how that amount was determined. Seems to me that's not asking for too much.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2016

    I did the Canadian protocol of 16 hypofractionated (extra-strength) treatments, but based on a just-completed study in which my RO participated, for node-negative small (<1.5cm) Luminal A tumors in women >60 yrs. old, they were all to just the tumor bed and a small area around it. In effect, they were all “boosts.” I had some reddening and enlargement of the mammary seroma, plus some fibrosis over the seroma, but no other side effects. No itching, irritation, broken skin or even fatigue.

  • ChattyKat
    ChattyKat Member Posts: 28
    edited October 2016

    ChiSandy thanks for your response. I was grade 3 no nodes involved but triple negative otherwise similar Dx and surgery. Besides the side effects being less, I just don't want to be over radiated and don't have confidence in the RO. Good to hear from someone that actually had the Canadian protocol.


  • reflect
    reflect Member Posts: 576
    edited October 2016

    Hi ChattyKat, How far is it to the nearest (NCI) center? It might help you to get a second opinion. That might help confirm your local RO's recommendation or lead you to a new center. I would also be uncomfortable with an RO who seems to have a monopoly in the area. I know nefarious, greedy people are out there in the cancer world but don't believe there are many of them. I feel lucky I have so many choices here and have never felt any of my docs were in it for the $$. Keep us posted.

  • ChattyKat
    ChattyKat Member Posts: 28
    edited October 2016

    Reflect, I'm not sure where the nearest NCI center is but I will try to find out. I'm a couple of hours north of Phoenix and I'm sure there is probably one there. I will definitely let you know what happens.


  • octogirl
    octogirl Member Posts: 2,804
    edited October 2016

    I live in a semi-rural area and the closest radiation center/location is a 45 minute drive from me. For this reason, I wanted the Canadian shorter protocol, as I planned to (and did) work through radiation, and doing all of that driving back and forth especially in winter (heavy, dangerous fog is an issue around here in winter) just did not appeal..I just don't drive that much (my work commute is 4 miles, I could even walk it if I were ambitious). When I asked my MO and RO about it they expressed doubt as to whether I would be an appropriate candidate. However, my RO, while still in a small town, had an affiliation with a large center (Stanford) and said he would run it by the entire Stanford Rads Board after doing the sim, getting x-rays, sharing my charts with them. End result: the board gave their ok to the shorter protocol and we did it.

    I did reasonably well, but I did have rather bad skin peeling and burning. I was amazed at how quickly it healed once rads stopped, however. And, even with only three weeks of awful driving, I decided that it was as good an excuse as any to treat myself to a new car...:)

    So, I agree with those that recommend you seek a second opinion at a NCI Center if at all possible. Knowing that the experts at Stanford were on board with the decision gave me peace of mind.

    Octogirl

  • ChattyKat
    ChattyKat Member Posts: 28
    edited October 2016

    Thank you Octogirl for your response. I see my MO in 2 weeks and I am going to talk to her about it. I know that she is connected to several offices all over AZ so I'm sure that she can recommend who I might want to see. Since I haven't even had sim or know what the referred RO will have to say, I guess I'll have to wait until he does the workup before I can get a second opinion. At any rate, I am going to ask that he provide me with the guidelines based on my situation. I've read that if the RO does not or says cannot provide the guidelines to run and find another RO. I'm also going to request the Canadian protocol, armed with many clinical trial articles that I've found. Fortunately we do not get bad winters here but I do have to travel 30 minutes to get to the RO's offices. I will travel even further if I have to for treatment. I'd rather feel comfortable with my RO than worry about whether or not a local RO knows what he's doing or if he's looking to make money. So far I have not met anyone who did not have to stop treatment for a few weeks because she was burned. I know that can happen but I'd like to believe it shouldn't happen to everyone. I still have 8 more weeks of chemo and then I am taking a 3-4 week break before radiation per my MO's recommendation. So I won't even see the RO until mid January to start the process. I will let you know how it goes.

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2016

    I did 25 rads - no boosts. Am Stage IIIc IBC so a very different DX.

    We are each so unique! For me, the 4 neoadjuvant DD A/C were easy - did not slow me down at all. The Neulasta shots were no problem at all - only reaction from them was, that almost to the minute, 2 hrs after the injection I would go to sleep for 2 hrs. 2 weeks after last A/C, I had UMX followed in 3 weeks with 12 weekly Taxol. The Taxol was NASTY - I was utterly and completely EXHAUSTED the entire time. A week after last Taxol, I started rads and felt better every day. I had no skin issues during rads just a very slight pink after number 24. Unfortunately, though, the day after last (25th) rad, the entire area (mid-chest around to back and up side of neck). that had been irradiated was blistered - from then on it got worse. (Have the scars to prove it .). What finally healed it was Domeboro soaks. Last Rad was in early March and last scab finally came off on June 29.

    If you don't trust your Dr find another one!

    How long a port remains in place is as much a personal choice as a medical need for most. Personal I prefer to keep my 'Little Soldier standing guard and ready for battle if needed' (my port) as it has for 7+ yrs. For me, it is a positive 'just in case'.

  • ChattyKat
    ChattyKat Member Posts: 28
    edited October 2016

    Kicks. Just goes to show how different everyone is when it comes to chemo. A/C was horrible for me but now on Paclitaxol and i am 99% better. Sounds like you went thru a lot when you finished rads. My concern is burning because I am very sensitive to the sun so I would imagine the radiation will not be easy. Not only that the being exhausted. Luckily I am retired so I don't need to work. I'm surprised that you don't mind having the port in. I can't wait to get it out. It just does not feel normal to me and it irritates me. I guess whatever works for you is best. Hopefully your battle is over. I've read if you get past 5 years without recurrence you are probably in the clear. Wish you the best. I'll let you know what happens. Thanks for responding.

  • Numbalina
    Numbalina Member Posts: 17
    edited November 2016

    I actually got the treatment options from two ROs. The first RO I was seen by suggested a shorter treatment protocol (20), and the second a longer treatment protocol (33). Of course I then asked my MO for advice and was told to follow the longer course. I have just begun the radiation treatments and I already wish I had gone with the shorter protocol. The MO said two things about the decision -- the shorter protocol doesn't have as much data based on the fewer number of studies because of a shorter history, and since the radiation dosage per session is stronger in the shorter protocol there would likely be stronger side effects. I am having to go through the breath hold process during treatment (left breast radiation can cause lung and heart damage so the breathing technique is used to lessen the radiation to these organs) and this is making me really annoyed.

  • etnasgrl
    etnasgrl Member Posts: 650
    edited November 2016

    I did the Canadian protocol, with 15 higher dose treatments and then 5 boosts, so 20 in all. I did amazingly well. No burning, (my skin did turn pink, but that was it), no open wounds, and no peeling. Really, my only side effect was fatigue, but even that was manageable.

  • ChattyKat
    ChattyKat Member Posts: 28
    edited November 2016

    Numbalina from what I've read about he shorter protocol, it has less side effects but has produced very similar results as the longer protocols. I've decided that after I get the evaluation from the RO, I will get a second opinion. I am also going to go armed with articles about the shorter protocol. I suspect my RO is not one who likes to be challenged but if that is the case, then I don't want him. It's my body and I have a right to have input into my treatment plan. From what I'm told he doesn't want anyone to get a second opinion which goes against all my other doctors. They all suggested I get a second opinion if I wanted one and said they would not be offended if I did. That kind of tells you something about this RO. Well I'm going to set up an appt to get my evaluation done.


  • ChattyKat
    ChattyKat Member Posts: 28
    edited November 2016

    etnastrl. Glad to hear everything went so well for you. From everything I've read the side effects are much less with the shorter protocol even though the strength of each treatment is greater. I'm hoping I can do the same. My problem is I am triple negative and I have been receiving chemo. Clinical trials have not had enough of people like me in the trials to determine the results. I suspect my RO isn't going to like me even bringing it up as a possibility but I think I owe it to myself to question his treatment plan. I have an appt tomorrow 11/2 and I'm hoping I'll get some insight into his plan. I'll post as I go through this process. Thanks for your input.

  • reflect
    reflect Member Posts: 576
    edited November 2016

    Hi all, I wanted the shorter course also, but my RO was uncomfortable with that as I'd had chemo. He said there haven't been studies including those who've had chemo (I think that's correct, from my on-line research). I'm 11/30 done today and no skin effects. I do have a dry cough which they do think is from the rads. (internal mammmaries, center of chest and high). Looking forward to being done by Christmas as someone else said! We have a 3 day trip to Old Quebec planned right after I'm done.


  • etnasgrl
    etnasgrl Member Posts: 650
    edited November 2016

    ChattyKat....

    Absolutely!!! You are your own health advocate and if you question something, don't be shy! Remember, our oncologists work for us!
    I wish you all the best. I'm sure you will end up with the best treatment plan for you!
    ((((Hugs))))

  • ChattyKat
    ChattyKat Member Posts: 28
    edited November 2016

    Reflect, just found an article that states "Although there was initial caution expressed but the American Society of Therapeutic Radilogy and Oncology (ASTRO) practice guidelines, there is now data to support the safety of the use of HF-WBI in patients having receiving chemotherapy." Conclusion "Hypofractionated radiotherapy should be routinely offered to women who desire breast conserving therapy with invasive, node-negative breast cancer (that's me), regardless of the grade of the invasive disease." At any rate, I don't know what my RO will say but suspect he will not want to do it. Sounds like you have 30 or 6 weeks. I am only stage 1a with no lymph node involvement and clear margins, so I'd like to hear how many weeks he says without using HF-WBI. I just don't feel I should need 6 - 8 weeks. I'm thinking 4 with maybe some boosts. Hopefully I'll find out tomorrow. I'll post when I know.

  • reflect
    reflect Member Posts: 576
    edited November 2016

    Hope it goes well ChattyKat! My situation is different with positive nodes. I hope you can get the shorter course. And get a 2nd opinion if you aren't comfortable with the first. Keep us posted.

  • Numbalina
    Numbalina Member Posts: 17
    edited November 2016

    ChattyKat, can you post the reference to this article? I am not sure why the RO I am using decided to use the longer treatment plan. I am wondering if it is due to the fact that the tumor didn't respond to the chemotherapy I received neo-adjuvantly. I asked the radiation techs today what the dosage and fraction was for my treatment plan and was kind of shocked to hear that the cumulative dose will be 61 Gy (25 treatments at 1.8 Gy, and 8 boosts at 2 Gy). I plan on asking about this when I see him again next week. In the meantime I am struggling to cope with the time between the daily imaging done to position me and the start of the actual radiation dose. The deep inspiration breath hold technique in itself isn't bad, but laying flat on my back in a cold room on a cold table while staying completely still for what seems like an eternity with all the breathing apparatus is making me lose my mind and get very angry. Add in the extra 13 visits this treatment plan offers and you get a picture of how wild I am at the end of each treatment.

    I am looking forward to hearing what option(s) you were offered.

  • ChattyKat
    ChattyKat Member Posts: 28
    edited November 2016

    Numbalina the title of the article is Hypofractionated radiation therapy versus conventionally fractionated radiation therapy for early-stage breast cancer: how do we choose? the authors are Suzanne B Evans & James B Yu and author correspondence is james.b.yu@yale.edu. If you do a engine search on most of the title you should find it.

    Just got back from RO. I feel a little bit better. He said 4 weeks and 1 day. I told him I brought all this information but he said he does not do it. I told him if he said 6 - 8 weeks I would fight for the hypo fractionated. He said 4 weeks is the standard now, he said it gets better results. Interesting that yours is 33. You are stage II and I am stage I, yours is grade 2 but mine is grade 3 which is the worst, and I also am triple negative which is the most invasive and aggressive form. Maybe you should ask why 33 and not 21 if your RO is opposed to the Hypofractionated. Let me know how you make out.

  • Numb
    Numb Member Posts: 432
    edited November 2016

    I am triple negative ILC and had 4 ACs and 12 Taxols, just finished the rads. I had a 2cm tumour, a lumpectomy with clear margins and no lymph node involvement, grade 3, stage 1. I was given 16 rads and told that they are equivalent to having 33 due to the fact that they are slightly stronger but at the end of it you get the same amount of radiation, it is just more convenient to only have 16. I had no side effects. I have been attending a very up to date hospital that keeps abreast of all the research and have been told that 16 is now being given to all radiation patients. It is not any less effective than having 33 rads. So if you get 4 weeks of a slightly lesser strength for each treatment and it equals the same radiation in the end as the 3 weeks one then you will end up with the same treatment, but it will just be less convenient for you to have to do 4 weeks as opposed to 3 weeks.

  • beebs2704
    beebs2704 Member Posts: 128
    edited November 2016

    I think it's a combo of efficacy and cost for the Canadian protocol. Because it's free to have the treatments and it appears to be as effective, more patients can receive treatment through the system. I'll be having 16 treatments plus 5 boosts after chemo. Seems to be the standard in Canada, or at least in my province. There are some individuals variations of course but seems to be the common regime.

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