Canadian protocol, need help deciding on boost treatments

jdot

jnu - Congrats on completing your course of radiation. It's weird to think the effects continue for another 1-2 weeks.

After consulting with my BS, I will most likely forgo the boost treatments. He validated my feelings of not wanting more radiation than necessary. I don't have to make this decision yet, and will see how I'm feeling over the next week or so. I am already fatigued from the 5 treatments I've received so far. I can't imagine what it will be like at the end of week three, and then get another blast of 1,000 units over 4 days.

My BS gave me something else to consider: having my ovaries removed so I can skip Tamoxifen and go straight to Arimidex. The potential side effects of Tamoxifen seem a lot worse than Arimidex, but of course I'll consult with my oncologist and she how she weighs on on the idea.

Kokomo26

Hello Jdot, jnu, Bubbie1 and all other ladies who are sharing their choices and experiences.

I, too, am facing this dilemma and need to decide if to boost . I am having the 16 hypofractioned treatment and my RO has recommended 5 boosts as it will give me 4-5% added protection. But I know a few ladies who were told they didnt need it with similar Dx. It seems to depend on the RO altho the research I have read definitely recommends for under 50. I am also 61 and will be on Letroloze after. (Not looking forward to that at all!)

Also, anyone read that boosts cause more fibrosis?

Cowgirl13

Dorothy, I just wanted to say that I had 16 rads and 3 or 4 boosts. My skin went thru it very well. I was just a little red at the end. So glad I had this protocol. I will say, I did have grade 3 and was HER2+++ which is probably why I had the boosts. BTW, I was 64 when I went thru radiation.

Kokomo26

@Cowgirl13......thanks for replying. Happy to hear your skin went thru it very well. And no lasting issues it sounds like. I have had 12 so far and now pink with dots and under breast lots of pink dots. Using a soft cloth now under breast. Hope it doesnt get any worse.

jnu3

Finished radiation Thursday 3/17/16. Think of it as a microwave - once the timer goes off, the potato continues to cook. My cancer was left breast with no lymph node involvement 0/4 but I tell you that my underarm and the under/outer breast is beet red and my nipple is trying to be a raisin. I do have the dots but they are now dark. I also have a come and go itch. Well in time it will all go away; in the meantime - how lucky we are to be where we are and wake up each morning to smell the coffee. Now on to anastrolzole and a new day with each morning.

Kokomo26

jnu3.... U made me laugh out loud! I think mine is already a raisin. I also have some itch

Kokomo26

Jdot.... I am in Ontario at a major centre and my RO recommends the boosts. Where did u read that in Canada and the U.K. they don't recommend it

Marjorie8888

Hi Dorothy,

My rads onc is giving me 20 treatments and the last 5 are boosts (200 per day) I just had the cat scan to set up for the boosts next week. Then his nurse says he is thinking of not giving me the boosts.Is this common?

jdot

Dorothy, my RO said that in Canada and the UK it is not common practice to do the boost treatments. This, however, may relate to stage of cancer, breast size and age of patient.

Kokomo26

Hi Marjorie.....Are you in Canada? Not sure why he would say boosts as part of treatment and then decide not. Any news in this regard lately?

Fearless1956

I had the Canadian fractionated protocol also. I had a total of 16 treatments and no boosts. I had heard of others having boosts with rads and asked my RO if I would be getting any. I understood her explanation for my situation to be that I didn't need them since I had DCIS. I took that to mean that the boosts are more for use with invasive cancer. I'm not sure if that's a correct understanding or not----just my view on why I didn't have any boosts.

jdot

Fearless, thanks for sharing your info. My RO wants me to do the boost treatments, but he's leaving the decision to me. I've completed 11 treatments and I wasn't expecting to be this fatigued.

jnu3

Well I finished my radiation 3/17/16. Follow up visits to RO and MO set thirty days out. Last week I continued to cook and turn red and redder then dark brown. Last Thursday (one week from finish) I was bad sunburn sore; took Friday off work. Then the itch began and now the peeling. Too bad it wasn't related to a wonderful tropic vacation. I am having some deep rib pain and if that continues I am going to call the RO.

Kar324

Hi ladies,

Love this forum. I am also on the same page about the boosts. I discussed this thoroughly with my RO who said to " think about it". I am definitely finishing up the 16 whole breast treatments, but I am concerned about the additional radiation and the possibility of more side effects etc. I understand the boosts are electron and " more superficial", however my RO did indicate that the boosts offer a 2-3 percent less risk of recurrence over the course of 10 years. So, of course, I'm on the fence. Also, I am having left sided radiation, today was treatment number 12. My breast is somewhat tanned, but no pain. The middle of my chest though is turning a little pink. Is this normal.? Anyone else ever notice this? My RO indicated something about the " positioning" on the table. I am prone and now I'm worried that I am receiving more radiation to my chest wall. Is this "scatter"? Ugh, these questions keep me awake at night.

Fearless1956

jnu3 and Kar324 -- I finished the Canadian protocol on Feb. 2 (left breast). I never got a bad burn, just very red all over breast, underneath breast and in the axilla. I never had any real pain, just the itching. For about a week after treatments ended, the color got redder and itched more. After that week, I had some mild peeling in the axilla. The skin is now a light tan color. RO said it would stay that way for several months. I'm very fair skinned and had worried that I would burn really bad like I used to do when I went to the beach, so I was pleasantly surprised when I didn't burn like I thought I might. My treatments were in the supine position. I asked about radiation to my heart and it was explained to me that the way the rays are angled with the positioning of the machine, that the heart is avoided. I didn't have boosts and asked my RO about them but was told I didn't need them. I have come to believe that every treatment plan, whether Canadian or full 33 day plan, is very individualized and that there's nothing "cookie-cutter" about it.

Scottiee1

Four years ago I had 16 treatments plus 5 boosts. I did have severe burns but within 10 days, it cleared.

I was told that it depends on your skin type and that everyone's experience will be different

jdot

I finished my 16 radiation treatments on Friday (April Fool's Day!) and decided against the boosts. To provide a 2 percent improvement is not worth it for me. At my treatment facility, I had the opportunity to meet with the physicists who designed my treatment plan. I was able to view the images of my ribcage, lungs, heart and breast and see exactly where the radiation hits and where it does not. The physicists were very happy to answer all of my questions and welcomed me back anytime. In fact, I returned another day for another one-hour visit to have more questions answered.

I experienced much more fatigue than expected during my 16 whole-breast treatments. My RO said he hasn't heard of anyone having this reaction. About an hour after each treatment, my energy level and cognitive level would drop. I'd be in a fog for several hours and then I'd feel my mental clarity returning and my energy coming back. I'd be fine until the next day after treatment. On weekends I'd feel just fine (except for the weekend after my final treatment which was spent on the couch watching movies). It is now my fourth day after treatment and I feel great. I have very little skin reaction. Basically, I've got a pink rectangle on my chest that itches sometimes throughout the day. I've been using aloe from day one and later in the process I added a burn balm recommended by my local breast care center.

Based on a ridiculous amount of research studying radiation oncology reports and statistics, learning how radiation works and getting input from my RO and BS, I feel very good about my decision to forgo the boost treatments. For me it was the right decision.

jdot

Kar324, perhaps your RO could show you the images of your treatment plan so you can see how and where the radiation is administered. It was explained to me that during the whole breast treatment the beams go across the breast. For me that was two beams, one from my upper right going down and across and the other from my lower left going across and up. The boost treatment are different. There are several beams that enter the breast from different angles, all intersecting in the tumor bed. This can be done with photons or electrons. The electron beams can be stopped in the tumor bed, but there could be more cosmetic issues based on tumor size, location, etc. This is my interpretation of what I learned from my RO, so I recommend talking with your RO if you want such details. Good luck with your decision! It's a tough one to make, especially when dealing with such a strange form of medicine.

molly1976

I had 15 whole breast treatments and 5 boosts. Radiation was close to a non-event for me. I had one itchy patch on my upper inner breast that lasted maybe a week but no other symptoms. It was a no brainer for me to have the boosts, but then I've always been of the mind that I would take whatever treatments my docs were willing to throw at this.

jnu3

Followed with RO today. Had told him about hitting the reddest point one week after completion of radiation; started peeling last week and by week's end was having the deep rib pain and shooting pain and ache in my breast. He said that the process basically followed the normal course. The deep rib pain would lessen as time went on. The shooting pain and ache was probably related to nerves and nerve endings regenerating and could continue for months to come. At least there was nothing that was out of the ordinary. Continuing the anti hormone/hormone suppressant - but that it for another forum.

jdot

jnu! Sorry you're having an extended reaction to radiation. Hope your side effects improve quickly.

Cowgirl13

This is a great thread. I don't think there has ever been a 'Canadian protocol' thread before. Since I had it, I've always wanted to know more. Thanks ladies!

jnu3

All is well and within normal expectations. I have been seeing a massage therapist to keep lymph moving and promote healing. I am zen.......

Kkubsky

I just finished my 16 whole breast treatment and am having 2 boosts the next 2 days. I figure that for my peace of mind I want to do everything I can to get rid of this crap. I've already had 3 weeks of radiation and can never have it again on this breast so I am going to blast it now.

I am glad this is coming to an end. I cannot imagine having to go for 6 weeks.....

JuniperCat

I also had the Canadian Protocol with two boosts. My last day was the 9th of March. I went to my RO yesterday for a checkup and he was surprised at how good my skin was. I really attribute that to the fact that I slathered on lotion day and night. I had had a horrible, stubborn radiation rash on my chest (my treatment was via prone position). It was bleeding and itchy and very difficult to treat. It took my mind off of whatever was going on with my breast!

jdot

JuniperCat... Did you find anything that helped your rash? I'm dealing with a heat rash now and wonder about using a cool cloth with salt water.

JuniperCat

jdot, the onc. nurse mixed up a combination of acquafor, lidocaine and Silvadene.I alternated using that with a prescription ointment called Elocon. To keep the cream on my skin and not on my clothes I covered the area with non-adherent pads and gauze pads. When the skin started to heal (it's still not back to normal yet on my chest), I used Cetaphyl (over-the-counter jar of moisturizer) which I keep in the fridge. I use now it and it feels great. The coolness from the fridge really seems to help. I hope you'll find relief soon!!

jnu3

I used the Cetaphyl too.....great lotion. Never thought to keep it in the fridge though.

JuniperCat

jnu3, I can't take credit for that idea....my dermatologist suggested it. I think from now on I will always keep it in the fridge. It's soothing and cooling

Fearless1956

I used Miaderm on my skin during my Canadian protocol radiation and found it very helpful. I'm now 2 months out after finishing and my skin feels and looks fine. It's still a little tan but that's about it. I was on the Winter Rads board and saw lots of helpful information (Check itout for a lot of helpful hints). The one I thought was most interesting was the use of cooled (refrigerated) cabbage leaves. I read that several people found that to be very helpful although I never had to try it.