☺RADIATION TREATMENT ☼☼☼ QUESTIONS AND ANSWERS☻

MyTurnNow

Cat64 said:

Intraoperative Radiation Therapy
Today I heard about this procedure. I looked it up and it went to the Mayo Clinic. Has anyone had this done? I know they have it in Minnesota, Arizona, Rush Hospital in Chicago and somewhere here in Florida, but haven't yet found out where. It seems to have several benefits, one being ALOT less radiation and a better chance of no recurrence.
Cathy

There is a Mayo location in
There is a Mayo location in Jacksonville, FL. I'm not sure but perhaps this is the FL location you're referring to. It's located off of J Turner Butler Boulevard at San Pablo Road, very close to the beaches.

Cat64

MyTurnNow said:

There is a Mayo location in
There is a Mayo location in Jacksonville, FL. I'm not sure but perhaps this is the FL location you're referring to. It's located off of J Turner Butler Boulevard at San Pablo Road, very close to the beaches.

Thanks MTN
I will look that up. It dawned on me late last night that these were probably all Mayo Clinic locations (duh) except for Chicago. Definetely worth checking into!
Hugz,
Cathy

kaja

Finished Rad's
I had six weeks of Rad's and during that time was exhausted. I did find, however, that the six weeks flew by. I finished one month ago and feel great. During the process, I had discoloration, warm feeling and crusting, which has since dissappeared. My doctor and team were the best, but I am sure that all of us feel the same way!

kaja

Finished Rad's
I had six weeks of Rad's and during that time was exhausted. I did find, however, that the six weeks flew by. I finished one month ago and feel great. During the process, I had discoloration, warm feeling and crusting, which has since dissappeared. My doctor and team were the best, but I am sure that all of us feel the same way!

Ritzy

kaja said:

Finished Rad's
I had six weeks of Rad's and during that time was exhausted. I did find, however, that the six weeks flew by. I finished one month ago and feel great. During the process, I had discoloration, warm feeling and crusting, which has since dissappeared. My doctor and team were the best, but I am sure that all of us feel the same way!

Congrats Kaja on finishing
Congrats Kaja on finishing rads! That is so great! I am getting really tired now too. I just finished #19. I am glad that all of the bad effects that you had are gone now. Good luck!

Sue

Ritzy

taleena said:

touche'... Jeanne... you
touche'... Jeanne... you rock... and can get on the "soap box" when ever you see fit!

Hugs,

~T

I agree Taleena! WTG
I agree Taleena! WTG Jeanne!

Sue

Tux

Ritzy said:

Congrats Kaja on finishing
Congrats Kaja on finishing rads! That is so great! I am getting really tired now too. I just finished #19. I am glad that all of the bad effects that you had are gone now. Good luck!

Sue

I am "generous" in size (in the terms of the radiation onc) & I wore a bra every day during rads (I am a teacher, so I just about had to!) I purchased the "just My size' brand of cotton bras in a larger size--very comfy. The last few weeks I padded the area with white flannel squares, since my incision is on the underside & gets pressure from the bra band.
I just let the flannel hang below the band. THe nurse told me I wouldn't be able to wear a bra, but I did with no trouble. Actually, the bra was more comfortable that going without, since it held "the girls" in place & there was less movement & therefore less pain/irritation.

Noel

Tux said:

I am "generous" in size (in the terms of the radiation onc) & I wore a bra every day during rads (I am a teacher, so I just about had to!) I purchased the "just My size' brand of cotton bras in a larger size--very comfy. The last few weeks I padded the area with white flannel squares, since my incision is on the underside & gets pressure from the bra band.
I just let the flannel hang below the band. THe nurse told me I wouldn't be able to wear a bra, but I did with no trouble. Actually, the bra was more comfortable that going without, since it held "the girls" in place & there was less movement & therefore less pain/irritation.

Good information Tux.
Good information Tux. Thanks!

♥ Noel

Jeanne D

Tux said:

I am "generous" in size (in the terms of the radiation onc) & I wore a bra every day during rads (I am a teacher, so I just about had to!) I purchased the "just My size' brand of cotton bras in a larger size--very comfy. The last few weeks I padded the area with white flannel squares, since my incision is on the underside & gets pressure from the bra band.
I just let the flannel hang below the band. THe nurse told me I wouldn't be able to wear a bra, but I did with no trouble. Actually, the bra was more comfortable that going without, since it held "the girls" in place & there was less movement & therefore less pain/irritation.

Tux ☻
Tux, Congrats on finishing rads. I know that they aren't easy and you did it! That is huge! And, those "justmysize" bras are very comfortable. Thanks for posting this!

Love, Jeanne ♥

LadyParvati

So Much GREAT Info!
Wow! I love this thread--there's so much great information! It's nice to learn about the range of possibilities for radiation and its consequences and realize that my experience won't necessarily follow the worst I've read yet be able to prepare mentally for the worst while hoping for the best!

I'm having a bit different rad than most I see here--I'm having accelerated partial irradiation--the MammoSite version--which means rad twice a day for 5 days beginning Dec. 7. I've been told it has a higher risk of fat necrosis--has anyone experienced any problems with fat necrosis? Did it improve over time?

Thanks! Sandy

Noel

LadyParvati said:

So Much GREAT Info!
Wow! I love this thread--there's so much great information! It's nice to learn about the range of possibilities for radiation and its consequences and realize that my experience won't necessarily follow the worst I've read yet be able to prepare mentally for the worst while hoping for the best!

I'm having a bit different rad than most I see here--I'm having accelerated partial irradiation--the MammoSite version--which means rad twice a day for 5 days beginning Dec. 7. I've been told it has a higher risk of fat necrosis--has anyone experienced any problems with fat necrosis? Did it improve over time?

Thanks! Sandy

Hey Sandy
I am so glad that you like this thread! Those of us that have just been thru rads were trying to help the newbies out with as much info as we could. But, always do what your own rads oncologist says to do.

I am sorry, but, I really know nothing about the radiation that you are having. All I do know is that my oncologist told me that it is considered to be in the trial stages as there hasn't been enough years of documented proof for long term results. Now, don't let that discourage you or upset you. I am just being honest with you. I hope that you get thru it just fine and have NO side effects. Let us know how you do.

♥ Noel

susie09

LadyParvati said:

So Much GREAT Info!
Wow! I love this thread--there's so much great information! It's nice to learn about the range of possibilities for radiation and its consequences and realize that my experience won't necessarily follow the worst I've read yet be able to prepare mentally for the worst while hoping for the best!

I'm having a bit different rad than most I see here--I'm having accelerated partial irradiation--the MammoSite version--which means rad twice a day for 5 days beginning Dec. 7. I've been told it has a higher risk of fat necrosis--has anyone experienced any problems with fat necrosis? Did it improve over time?

Thanks! Sandy

Sandy, this thread helped me
Sandy, this thread helped me and others too. We can always use others advice that go before us. Good luck to you with your rads.

♠♣ Susie ♠♣

Mama G

susie09 said:

Sandy, this thread helped me
Sandy, this thread helped me and others too. We can always use others advice that go before us. Good luck to you with your rads.

♠♣ Susie ♠♣

Let me know how it goes, Sandy
I am considering the same treatment and wonder what that week will be like...
I'm a teacher and it would be a lot easier to take one week off for this instead of driving 20 some miles each day after school.
Also, I never saw an answer to the question about the after effects of radiation on the mastectomy site. Mine is still pretty darn ugly (my surgery was July 6th) and i hate to look in the mirror when I'm nakey.
Thanks for all the advice everyone! I'm actually looking forward to the rads as that will signal an end of this misery. I had my 3rd Taxol today, with 9 more to go. Finished a/c
first, now this seems like breeze compared to that!
God bless all of you out there ! I'm really enjoying reading your stories and replies.
HAPPY THANKSGIVING! (i live in FLA and it's actually 3am. Can't sleep. ONe of the side effects of the Taxol?)

LadyParvati

Mama G said:

Let me know how it goes, Sandy
I am considering the same treatment and wonder what that week will be like...
I'm a teacher and it would be a lot easier to take one week off for this instead of driving 20 some miles each day after school.
Also, I never saw an answer to the question about the after effects of radiation on the mastectomy site. Mine is still pretty darn ugly (my surgery was July 6th) and i hate to look in the mirror when I'm nakey.
Thanks for all the advice everyone! I'm actually looking forward to the rads as that will signal an end of this misery. I had my 3rd Taxol today, with 9 more to go. Finished a/c
first, now this seems like breeze compared to that!
God bless all of you out there ! I'm really enjoying reading your stories and replies.
HAPPY THANKSGIVING! (i live in FLA and it's actually 3am. Can't sleep. ONe of the side effects of the Taxol?)

Sleeping & Rad Planning
Sometimes I have trouble sleeping, too, Mama G--I think it's as much worry/stress as it is any drugs. I haven't started my chemo yet, so *I* sure can't blame Taxol or any other drug. I just wake up with my mind full . . .

Sounds like you're taking the same chemo regimen I've been told I'll probably be taking. The doctors switched the order of my chemo & rads because the accelerated rad is so short that it isn't considered dangerous to postpone the chemo.

Accelerated partial breast irradiation trials began in the early 1990s. One technique, MammoSite, was approved by the FDA for use in 2002, so it has actually been used more than five years now, though it's true that long-term (e.g., 20-year) studies aren't available yet.

You might want to ask your doctor more questions about it. A Consensus Statement from the American Society for Radiation Oncology published this year states that only people who are "candidates for breast-conserving therapy" should be considered for this form of radiation treatment. To me, this statement implies that someone who has had a mastectomy should not be given partial breast irradiation, so I'm a little confused--are you going to be part of a new clinical trial?

I do believe that those of us who are comfortable doing so should participate in clinical trials--it's all the women who've gone before us and been willing to participate in clinical trials that have provided us with the knowledge and variety of improved treatment options we have available today. I'm participating in two, so far.

Mama G, Hang in there! I hope that your next 9 Taxol treatments go as smoothly as possible and that whatever rad you choose leaves you with the best possible long-term outcome!

Hugs! Happy Thanksgiving!

Sandy

crselby

LadyParvati said:

So Much GREAT Info!
Wow! I love this thread--there's so much great information! It's nice to learn about the range of possibilities for radiation and its consequences and realize that my experience won't necessarily follow the worst I've read yet be able to prepare mentally for the worst while hoping for the best!

I'm having a bit different rad than most I see here--I'm having accelerated partial irradiation--the MammoSite version--which means rad twice a day for 5 days beginning Dec. 7. I've been told it has a higher risk of fat necrosis--has anyone experienced any problems with fat necrosis? Did it improve over time?

Thanks! Sandy

brachytherapy
Hi Sandy. I had the 5 day, multicatheter interstitial brachytherapy (not the Mammosite device) starting August 30. Four days prior to that I had 45 multicatheters inserted through my breast that had had the lumpectomy. It took 2.5 hours for that procedure but the Mammosite insertion takes far less. Both are surgical procedures and so you will need to be very careful to avoid infection before, during and after you begin the radiation treatments. You should be fine if you do what the nurses tell you, down to the last detail.

Four days after the insertions, I started the treatments, twice a day, at least 6 hours apart. Although whole breast radiation, like these other women are talking about, takes very little time with each session, my treatments required a little radioactive seed to traverse each catheter. That takes a little longer. My sessions were 45 minutes long, but treatment with 45 catheters was a record amount (my surgeon took a huge amount of tissue out) and most women will not have more than 25. The Mammosite device does not have catheters but has a "balloon" into which the radioactive seed is placed for a short time during each session, then it is removed. I watched women with Mammosite devices come and go in 15 minutes! Treatment takes up a lot of your time during these 5 days, but then it's over sooner, right?

After the second treatment on day 4 I hit the "fatigue wall". Out of the blue, I could do nothing more than sleep for the rest of that day. Same feeling hit after the next morning's treatment! It made the removal of the catheters after the final, afternoon treatment on day 5, a great great relief!

Now that I am 2.5 months out from all that, I feel various lumps in that best that come and go, some are tender some are not. I figure, since the rad onc doc was not concerned about it, that these are signs of the tissues healing. That includes, probably, the fat dying and changing, too.

I've read that the resulting fat necrosis makes future mammograms hard to read, so I'm hoping to push for them to be read by someone very experienced, when that time comes. Don't want any more unnecessary biopsies.

But, like you, I too would like to hear from someone who had brachytherapy internal radiation years ago. I'd like to know how things progress for us. Anybody out there who had this newer treatment done a few years ago? Looking for info. Connie

DianaLou

LadyParvati said:

Sleeping & Rad Planning
Sometimes I have trouble sleeping, too, Mama G--I think it's as much worry/stress as it is any drugs. I haven't started my chemo yet, so *I* sure can't blame Taxol or any other drug. I just wake up with my mind full . . .

Sounds like you're taking the same chemo regimen I've been told I'll probably be taking. The doctors switched the order of my chemo & rads because the accelerated rad is so short that it isn't considered dangerous to postpone the chemo.

Accelerated partial breast irradiation trials began in the early 1990s. One technique, MammoSite, was approved by the FDA for use in 2002, so it has actually been used more than five years now, though it's true that long-term (e.g., 20-year) studies aren't available yet.

You might want to ask your doctor more questions about it. A Consensus Statement from the American Society for Radiation Oncology published this year states that only people who are "candidates for breast-conserving therapy" should be considered for this form of radiation treatment. To me, this statement implies that someone who has had a mastectomy should not be given partial breast irradiation, so I'm a little confused--are you going to be part of a new clinical trial?

I do believe that those of us who are comfortable doing so should participate in clinical trials--it's all the women who've gone before us and been willing to participate in clinical trials that have provided us with the knowledge and variety of improved treatment options we have available today. I'm participating in two, so far.

Mama G, Hang in there! I hope that your next 9 Taxol treatments go as smoothly as possible and that whatever rad you choose leaves you with the best possible long-term outcome!

Hugs! Happy Thanksgiving!

Sandy

I start Rads on Monday
I am so glad I found this thread. It has answered many questions I am having about radiation. I of course plan on asking my rads doc any questions I may have, but it is good to get insight and opinions from gals who have been or are going through rads. I admit I am apprehensive about the proceedure. I have had 2 lumpectomies. I am worried about fatigue, burning etc. I can get a sunburn QUICK, so I am wondering how that might factor in to any pinkness or burns I might get. I will have 30 regular treatments and then 3 accellerated treatments. I am 62. Do you think the age factor will effect the fatigue?

crselby

TraciInLA said:

My rads question
I'm currently doing chemo, and won't be starting rads until probably mid-Novemberish, but there's one aspect of rads I've already started worrying about ('cause it's not like chemo gives me *enough* to worry about or anything :-): The Bra Issue.

I'm a well-endowed woman, and was fortunate enough to be able to have lumpectomies, so my girls are still very much present and accounted for. I don't step outside my door without a bra -- I mean, like E-V-E-R. But will I still be able to wear a bra during rads?

I work in an office, so I can't just wear big baggy sweatshirts for 8 weeks. I would love some input from your experiences?

Many thanks from me and my girls :-)

Traci

To Bra or Not To Bra, that is the question
Hi Traci! Nice to hear from someone who shares my issue. I am a 40 DDD. I NEVER go outside my bedroom without a bra. This is for looks and for comfort. After my Stereotactic Core Needle Biospy, which diagnosed DCIS in June, my poor girls were uneven and sore from the cutting and subsequent swelling. But my "squish-en-up-tight" sports bras did the trick, although the uni-boob look it creates is ugly and makes my clothes ill-fitting.

Before I had the lumpectomy surgery, I needed two MRI biopsies in that same girl, and the male rad onc said to go without a bra afterward. I called the nurse, however and told her that that was not an option. She said they would give me a post surgical bra that would do the trick. It did not quite fit and certainly did not support the girls or prevent swinging or drooping, both being actions that hurt and allowed a bruise and hematoma to deveop. The hematoma was so large that my rad onc and breast surgeon both whistled, measured it and advised me to wear good support. So I went back to my sports bra.

Prior to my lumpectomy, my small breasted surgeon insisted that I find a sports bra that fastened in the front. If I could have had more time to order one online, I might have found one. The ones I found in the department stores were too small to encase my "robust" twins, but I bought some and wore them out of desperation.

Now, post surgery and rad treatments, the girls are no longer identical twins, but they are close, and I am back to wearing my underwire 40 DDD bras with the same amount of discomfort as before cancer.

My experience was that I had to be my own advocate, since men or small to normal breast sized women do not understand the issues involved with living with heavy, large breasts. Look online for sizes and styles that will work. Order, try them on, return them if they don't suit you, and try again. Sadly, they are few and far between and they are expensive. I wish you luck.

Mama G

LadyParvati said:

Sleeping & Rad Planning
Sometimes I have trouble sleeping, too, Mama G--I think it's as much worry/stress as it is any drugs. I haven't started my chemo yet, so *I* sure can't blame Taxol or any other drug. I just wake up with my mind full . . .

Sounds like you're taking the same chemo regimen I've been told I'll probably be taking. The doctors switched the order of my chemo & rads because the accelerated rad is so short that it isn't considered dangerous to postpone the chemo.

Accelerated partial breast irradiation trials began in the early 1990s. One technique, MammoSite, was approved by the FDA for use in 2002, so it has actually been used more than five years now, though it's true that long-term (e.g., 20-year) studies aren't available yet.

You might want to ask your doctor more questions about it. A Consensus Statement from the American Society for Radiation Oncology published this year states that only people who are "candidates for breast-conserving therapy" should be considered for this form of radiation treatment. To me, this statement implies that someone who has had a mastectomy should not be given partial breast irradiation, so I'm a little confused--are you going to be part of a new clinical trial?

I do believe that those of us who are comfortable doing so should participate in clinical trials--it's all the women who've gone before us and been willing to participate in clinical trials that have provided us with the knowledge and variety of improved treatment options we have available today. I'm participating in two, so far.

Mama G, Hang in there! I hope that your next 9 Taxol treatments go as smoothly as possible and that whatever rad you choose leaves you with the best possible long-term outcome!

Hugs! Happy Thanksgiving!

Sandy

Thanks Sandy. I'm the one
Thanks Sandy. I'm the one who was requesting the QUICK rads. Don't know what to do now that I read what you wrote. Maybe it's better to just do the proven tried but true method!
Either way I'm anxious to be down to that! and off the chemo. Seems like an eternity for 9 more weeks.... Thank the Lord it's not too bad though. WE CAN DO THIS!!!! Together!!!

DebbyM

crselby said:

brachytherapy
Hi Sandy. I had the 5 day, multicatheter interstitial brachytherapy (not the Mammosite device) starting August 30. Four days prior to that I had 45 multicatheters inserted through my breast that had had the lumpectomy. It took 2.5 hours for that procedure but the Mammosite insertion takes far less. Both are surgical procedures and so you will need to be very careful to avoid infection before, during and after you begin the radiation treatments. You should be fine if you do what the nurses tell you, down to the last detail.

Four days after the insertions, I started the treatments, twice a day, at least 6 hours apart. Although whole breast radiation, like these other women are talking about, takes very little time with each session, my treatments required a little radioactive seed to traverse each catheter. That takes a little longer. My sessions were 45 minutes long, but treatment with 45 catheters was a record amount (my surgeon took a huge amount of tissue out) and most women will not have more than 25. The Mammosite device does not have catheters but has a "balloon" into which the radioactive seed is placed for a short time during each session, then it is removed. I watched women with Mammosite devices come and go in 15 minutes! Treatment takes up a lot of your time during these 5 days, but then it's over sooner, right?

After the second treatment on day 4 I hit the "fatigue wall". Out of the blue, I could do nothing more than sleep for the rest of that day. Same feeling hit after the next morning's treatment! It made the removal of the catheters after the final, afternoon treatment on day 5, a great great relief!

Now that I am 2.5 months out from all that, I feel various lumps in that best that come and go, some are tender some are not. I figure, since the rad onc doc was not concerned about it, that these are signs of the tissues healing. That includes, probably, the fat dying and changing, too.

I've read that the resulting fat necrosis makes future mammograms hard to read, so I'm hoping to push for them to be read by someone very experienced, when that time comes. Don't want any more unnecessary biopsies.

But, like you, I too would like to hear from someone who had brachytherapy internal radiation years ago. I'd like to know how things progress for us. Anybody out there who had this newer treatment done a few years ago? Looking for info. Connie

Nope. I just had the
Nope. I just had the "regular radiation treatments". I got along really well and felt very good about having them. My oncologist at my cancer center also felt that there wasn't enough "long term" facts on survival and recurrences with mammosite rads. And, I didn't want to take a chance on going thru that if there wasn't any clear data on if it works. I wanted to be done with bc. You might ask where you got your treatment at Connie for anyone that might be done longer than you.

Debby

marywest

Ritzy said:

My rads oncologist told me
My rads oncologist told me to expect to be tired. But, he said it will help me if I just try and get more sleep than I did before, which I am. lol I am not tired yet, but, I am napping now during the day. I kind of like that.

Sue

I just want to throw this out there. I was to have 12 weeks of radiation. After surgery my doctor said, ask your radiologist if they can double the dose and be finished with radiation in 6 weeks instead of 12. The chemo worked very effectively on me, they took out 20 lymphnodes, and removed the tumor, she said all the tissue looked great and cancer free. When I asked to have the radiation reduced and double up on the dose, he looked over my chart and said yes!!!. It would never of crossed my mind to ask, honestly I had no clue they could do that. It saved me six extra weeks of radiation. Of coarse that was for my situation only. Anyway just wanted to share that in case it is available for someone else.