Hypofractionated radiation therapy

Greyt2mphrn

How is your breast holding up? How did you guys do with the radiation? I got really annoyed with the Social Worker and one of the techs. They keep saying, "Well you have a choice- you don't have to do this." Like any of us had a choice about breast cancer. We didn't get to go down a menu and say, "Well I'll have a small breast cancer, hold the lymph nodes, and a side salad with dressing on the side". They told us- lumpectomy comes with radiation and I'm trying to complete it. The tech tells me- well we've had people just do a couple and never come back. Is that supposed to make me feel "comfortable". What happened to those people? Did no one give a damn and try to find a way to help them get through this very stressful part of a horrible ride? It takes all my strength not to jump off the table and run out crying from sadness, pain, stress, frustration. Every day I just want to drive right past and not go in but I DONT want a recurrence and I don't want to suffer and die from breast cancer. 

Cowgirl13

Grey, if I may suggest, I'd stop the AI while going thru radiation. I wasn't put on an AI untll about 3 or 4 weeks after radiation. Its a lot for your body to take and its probably giving you many more side effects when its combined with rads. Good luck and I hope you are feeling better.

Liz

Greyt2mphrn

I would like to stop the AI but the MO says "NO!" The RO deferred to his judgment. Now my underarm is getting to be a dark red painful mess along with the side effects from the AI. Plus the hot weather doesn't make me any better. I don't want any recurrence so I have to give him his due. I won't see him until shortly after rads are done.

Artista928

I actually never heard of starting Tamox or AI until you are done with rads for the very reason that could be too many SEs to start with. I actually wanted to start Tamox while doing rads and was told best not to. Don't know what's going through you MOs mind but we can all stop whatever if the SEs are getting much. If it's too much I'd stop it and wait till rads is done. No sense in making yourself miserable. If there was good reason to start hormonals before rads is done then you'd see more people doing that as the norm I would think.

Cowgirl13

I've never heard of it either. Can't imagine.

Greyt2mphrn

I had a break between chemo and starting radiation. I first wanted to have a bilateral mastectomy to avoid having radiation and to reduce my anxiety about future recurrence. I was refused by my surgeon to have the surgery so I have to get through radiation. I was put on Femara and have been taking it for a couple of months. As soon as I started it, I started having waves of nausea, and depression so dangerous I tried to commit suicide. I was told to just wait it out and it will get better. It hasn't gotten any better and in some ways it has gotten worse. Now I have burns under my arm and under my breast and just am suffering. I also have skin problems which are driving me crazy. But everyone involved says I have to stay on the AI

Artista928

With those side effects you should stop it. Give it time to heal. I had a lot of delays myself too on this path. 2 months late getting started on chemo due to infection issues. Then in March my insurance dropped me so delay there for a month with final chemo. Then 1.5 weeks total delay in completing rads because I developed pneumonia and had partial collapse of both lungs.

I have arthritis of both knees that can be pretty debilitating at times. I'm 52 next month and while the AIs are more effective for me, MO had to make a quality of life decision esp since I live alone and put me on Tamoxifen instead.

I don't get the you have to stay on AI biz. No you don't. For any of us there is no solid evidence that any of this stuff is working so that's where we make the call on what side effects we can take. I can't imagine yours. I would just stop it until at least you are doing better and think about getting another MO.

BrooksideVT

What does matter is sticking with rads, not because of any guarantee, but because once you've gotten this far, neither have you fully treated the area, nor can you ever have rads to that breast again. Here I loosely quote my RO at the time I began to make backing off sounds.

What you can do is ask for a day or two off from treatment. Also, if I were having skin issues and/or beginning to balk, I'd insist on being seen by an RO every day. If "they" gave any pushback to that, I'd let them know I was having trouble continuing. Your rads center will always have a doc on call. Might not be your RO, but sometimes a different personality can be helpful, and a daily confidence/commitment booster may be just the thing you need.

Greyt2mphrn

I am really trying hard to not stop rads. I had to stop chemo early because of side effects. The problem for transcends just side effects. Despite using creams and a nightly steroid cream, I am turning into a big red underarm and shrunken painful boob. It is not easy for me because of history of torture- being set on fire and needing skin and muscle grafting. I suffer from extreme PTSD and each every time I go for rads, it is like reliving one of my worst nightmares. Over and over again. Now I can't sleep and anything I can keep down eventually comes up or out in spectacular fashion whether I am ready or not. Picture reliving being covered with alcohol and being set on fire, in addition to the other assaults (which you can guess- 3 guys), over and over again. Because I was a student, I was not given much in the way of pain relief, so I spent a lot of time in utter agony. And I had nausea and vomiting all through BC- from surgery through chemo until today- and Zofran only works sometimes. Now I am in a lot of pain.

inccmd

I'm considering hypofractionated radiation therapy. Have to decide by early next week. My MO recommended it if my RO agreed I met the criteria. I just met with my local RO who doesn't like to offer in general and not to those under 50. She prefers those 55 and older. I'm 48. She wants more data for longer period of time. Most of my care has been at a more progressive hospital that has really good breast specialists where the MO and surgeon are. I got the RO to agree to give me the option, but I am thinking I should have kept the longer drive where the ROs are more likely to embrace it. Done plenty of research and still leaning towards hypofractionated. Except for age, I meet all the other American criteria (criteria is different in Canada and England) : small tumor (1.1 cm), lumpectomy, no lymph node involvement, no chemo, right side. But you know how it is - big decisions and some of the doubt that goes with all that.

Peetie1

inccmd-I finished 20 hypofractionated (5 of them were boosts) treatments three weeks ago, left side. I was 49 at the beginning of treatment, I turned 50 during the treatments. My tumor was 1.2cm, no node involvement, grade 2. I did not have chemo (Mammaprint Luminal Type A Low Risk). Three weeks after treatment my skin looks great! There is very little visual evidence that I had radiation treatments. My breast is smaller, and I have had some nerve pain that reappeared after I began radiation, it is almost gone. I would choose hypofractionated radiation again!

llamalady

Inccmd - I just finished my hypofractionated today - YIPPEE!!! I had 16 treatments and I didn't have any problems. I'm 50 - tumor was 1.7cm, no nodes, non-aggressive, ER/PR+, HER2-, no chemo. I have not experienced fatigue and my breast is very slightly pink. I feel very fortunate (for many reasons) but one being that radiation was not difficult for me. Like Peetie1 I would choose it again as well - in a heartbeat.

inccmd

Thank you Peetie1 and llamalady for replying. That's great to hear. I'm also ER/PR+ & HER2-. May I ask - did you have full breast radiation or site specific? Just curious. I see that llamalady had whole breast. I never thought to ask my MO although she's not a RO.

llamalady

Yes inccmd - whole breast. I did not have boost or targets to any specific area because the 2 sentinel nodes taken were clear and margins were clear so they just targeted the whole area. It was very fast too. Once they got me positioned each day on the table and left the room it literally took about 2 minutes max and I was done. They had music playing and I never listened to a complete song :-)

pollicakes

It is great to read these posts.  I begin radiation next week, 15 sessions, with several boosts.  I was very concerned about radiation burns.  It appears that burns seem to be less with the shorter treatment.  I had 2 cm, left breast, lymph nodes were clear, er positive, her2 negative, Invasive ductal carcinoma, mucinous colloid carcinoma.  Thank you for sharing everyone, I feel a bit less nervous to begin next week.  I had a lumpectomy and oncoplasty. I have been on arimidex for a bout 1.5 months, no chemo.  I did push for the hypofractionated course, my Radiation Oncologist wanted a standard course.  Good luck to everyone and God bless !!  xoxoxo

Cowgirl13

Pollicakes, I had the same radiation schedule that you will be starting. It was a piece of cake and my skin was fine throughout. My radiation oncologist had lots of tubes of aquaphor in the office. I put it on while I was drassing after my session and then later in the day/night. Good luck!!

pollicakes

Thank you cowgirl, you have no idea how much it means to me to learn that was your experience !!!  God bless !!  xoxo

Lala6349

I didn't know that when I began this journey that I could read sooo much and still feel so uneducated, lol. I am starting my first session tomorrow morning, also doing 15 sessions and 5 boosts and am encouraged by the results you ladies have had. I also had a lumpectomy and oncoplastic surgery, hoping the smaller boob makes radiation easier, thanks for listening and good luck to all

ChiSandy

My hypofractionated rads were 3-D CRT targeted to the “tumor bed.” Acc. to my nurse-navigator, if I get a new primary or recurrence in a part of the breast wholly outside the original radiation field, I might be able to avoid mastectomy and just irradiate the new tumor bed.

Cowgirl13

ChiSandy, very interesting. Thanks for posting.

Cowgirl13

Lala, good luck today. Don't forget to put the aquaphor on!

Moderators

Lala, welcome and thanks for posting! Please let us know how today went for you.

Hope to hear more from you soon.

--The Mods

jessiebelle

I think that;s really good advice. Thanks:)

jessiebelle

Hi! Your post got me thinking and after consulting Google I found that our local hospital in Ontario, only offers this type of therapy when indicated. Interesting I discovered (while Googling) that my Doctor wrote the journal article in The New England Journal about the effectiveness long term of this type of radiation therapy. As I am starting a 16 treatment course tomorrow, I feel grateful to have advocated for myself and received the best possible care and am confident in the treatment and care.

Cowgirl13

jessiebelle, would you by any chance have a link for the article that your doc wrote? I'd love to read it.

jessiebelle

Hi Cowgilr13! Yes, here is the link. http://www.nejm.org/doi/full/10.1056/NEJMoa0906260...

I had my first treatment today and all is well. I used Cavilon No Sting Barrier Film in the am before as recommended by my RO. I asked about the "Canadian Method" here but I guess they only call it that in the U.S.

Well wishes to you!

Cowgirl13

jessiebelle, thank you for posting the link!

Lala6349

Three down and breast looks fine, I feel like I have a love hate relationship with the table but the time on the table is getting shorter so we're getting along better! Good thoughts for everyone on here