Hello dear girls, it has been quite a long time since I was here for last time (chemo consumed all my time! ah!) Well, my chemo is done, and I didnt feel major side effects, but fatigue is quite an issue!! My hair is growing back and I cannot complain as chemo was an interesting experience, I am very happy with the nurses at the chemotherapy unit, they are simply great!!...I am in Herceptin now every 3 weeks. I need a bit of help I was wondering if I can get advices about Radiotheraphy...I already talked to my radio-oncologist and he wants me to do 4 weeks of radio, it will decrease the chances of recurrence by over 20%. To be more precise at the moment my chances of recurrence are 30% without radio, but if I decide to have radiotherapy it will be only around 10% to 6%. But I need a bit of guidence here..Does anyone have radiotherapy? How often? For how long? Where in your breast did you have it? Side Effects? Long and short term side effects? Are your lungs ok? How your breast has changed? Is it really smaller or harder? ohhhhhh so many questions!!!!!! Thanks for your time and help I really appreciate any thoughts!!!! Have a fantastic week, Leonor (needing help!)

Hi Leonor, I finished a course of six weeks radiotherapy four weeks ago. This was every week day at the same time. It may have taken 10 - 15 minutes or so and is really nothing to fear. The first time you go you will have about a one hour session where the ?radiographers do mapping, which is where they take measurements of the area that will be treated. They will also mark the area in certain spots with single black dots, which are actually called tattoos and are the size of a pin head, these last forever. I must admit they can hurt just a little to have done, but hey, we have experienced worse. Each time you go in for treatment you are placed in the same position and you must not move at all! You put your arms behind your head and hold on to two handles for the whole time, until you are told to put them down. There is no pain at all and the machine zaps you for a short time, (maybe ??four times) each time. You will find you wait and count each time and get to know the procedure very well. After a short time, maybe a couple of days I'm not sure, your skin will begin to change colour and at times you really can feel the inside of your breast "cooking" a little, this doesn't hurt but feels weird. By the time the weekend comes around you will be looking for a rest, but over that time you can still feel this "cooking" feeling and at times you feel warm (bit like a hot flush). You feel better over the weekend and then the next week begins and it is all replayed over again. I found that towards the end of treatment my underarm started to get red and started to get a little sore, I had only read that it was like sunburn, but by the end of treatment and for about two weeks after (as you are still cooking) it became very red and very sore, and I felt the "like sunburn" was very unde emphasized. After my fifth week of treatment, the procedure changed and the only area that was treated (for a week) was the area where the lump/s were taken out. They use a much smaller machine with, guessing I would say about a 1 & 1/2 inch square diameter. This is great because it gives your underarm a well deserved break. It is for a shorter time and they do this for five days and then it is all over. I myself didn't have any problems with it, the doctors kept asking me how I was coping with the lethargy, but I can honestly say I didn't find it a problem at all. I can honestly say that apart from having my life governed by radiotherapy for six weeks, the "sunburn effect" was worse than I imagined. The nursing staff only ever offered me dressings and solugel, which to me wasn't quite enough to control the pain I had, but hey I survived and there are worse things in life. The worse part was the lymph node scar that had burnt and the bra rubbing on it. I had to go braless toward the end and just had to let "the girls" swing free. When radiation finished I was able to treat the condition myself and what worked for me was bepanthan smothered on at night. It is amazing though that when the burn started to heal, how quickly it did and now everything is fine. The treated "boob" is a little firmer than the other one and maybe a little bigger but all the skin is now fine. I feel that radiotherapy is just another tool to use to help combat this horrendous disease. It is quite okay to go through and from my experience, nothing to be overly worried about. It does rule your life for six weeks and the residual burning can be nasty, but of course everyone copes differently. I guess it is something we just have to do for our own peace of mind. I hope I haven't woffled on and this has been of some help to you. Best wishes, Dale xx

Dale has given you a very good picture of what happens with radiotherapy.I had a lumpectomy back in 2003 and was told I HAD to have radiation afterwards.I went for about 6 weeks and by the end I was quite tired and my boob was glowing like a hotplate but my skin never broke down.I had no problems afterwards with my lungs or heart.However,my boob was firmer and uncomfortable (not painful)from then on. Unfortunately,7 years later,I was in the 8% whose cancer returns in the same breast. So last year I had a mastectomy and chemo.You will find that radiation treatment is nowhere near as hard as chemo.It's scary at first but you get used to it after a few sessions and it doesn't hurt.If I could look into a crystal ball then I would have had a mastectomy in the first place but we don't know.I think you would be taking more of a risk if you don't have radiation- 8% is better odds than 30%. Tonya xx

Yes, hindsight is a wonderful thing isn't it, if only we knew........but I agree, radiation is worth doing and just another tool to work in our defence. Dale xx

Thanks for adding that info as well Leonie, I completely forgot it. Dale

Dear lovely and helpful girls, thank you so much for the clear and useful information. I appreciate the time you have spent in writing it!! I am still undecided as I can see some examples of ladies who did radiotherapy and they have recurrence anyway. So, it is probably no that accurate as they say? Leonie and Tonya why did you have 2 different cycles of radio? did it came latter in the same breast? in the same spot than before? Do you reckon it is treatment induce? Thank you again for all your help and support, it is great feeling you ladies so close!!! Love and light, Leonor

Radiotherapy help!!! | BCNA Online Network

14 Replies

Annie_Gayed
Member
14 years ago
Hi Leono,
This is Annie from BCNA’s Policy Team. We recently surveyed women in our Review & Survey Group to better understand their experiences of radiotherapy, and in particular, how often women experience burns to their skin.

We wrote an article in The Beacon summarising our findings as well as a list of skin care tips that women wanted to share with others. You will find the article in issue 55 on page 11. To find this issue, you can click here - http://www.bcna.org.au/news/beacon-magazine/beacon-archive.

We also produced a more comprehensive report with a full summary of results which you can find by clicking here - http://www.bcna.org.au/about-bcna/advocacy/research-reports#Radiotherapy.

Leono, I hope this information is helpful. All the best,
Annie
Annie_Gayed
Member
14 years ago
Hi Leono,
This is Annie from BCNA’s Policy Team. We recently surveyed women in our Review & Survey Group to better understand their experiences of radiotherapy, and in particular, how often women experience burns to their skin.

We wrote an article in The Beacon summarising our findings as well as a list of skin care tips that women wanted to share with others. You will find the article in issue 55 on page 11. To find this issue, you can click here - http://www.bcna.org.au/news/beacon-magazine/beacon-archive.

We also produced a more comprehensive report with a full summary of results which you can find by clicking here - http://www.bcna.org.au/about-bcna/advocacy/research-reports#Radiotherapy.

Leono, I hope this information is helpful. All the best,
Annie
hilsandglen
Member
14 years ago
Hi, I had my chemo followed by 5 weeks of radio to my chest wall and neck ( I had a mastectomy with lymph node involvement) My decision was based on I wanted to do everything within my power to give me the best chance possible . The other ladies have given a very detailed explanation of the process. After finishing chemo the thought of weeks of daily treatment is daunting but it actually passes very quickly. You are right to take time to meditate and do what is right for you. Keep in touch and I hope you have a peaceful Christmas PS the Otis foundation is wonderful my husband and I went there when I had finished my treatment very relaxing place enjoy xx Hilary
sillysam83
Member
14 years ago
Enjoy the Otis Retreat, We are off to one thru the Warwick Foundation in Jan for a few nights... Jo & I are also off to look at the Gawler Foundation on Monday...

Yes meditate and make a decision and be happy with it! No regrets Xxx

Merry Xmas and have a happy and healty new yr... until next time

Merylee
TonyaM
Member
14 years ago
Good luck with your decisions-it will be right whatever you choose.I always say that any of these treatment decisions are awful and if you do nothing then that's hard too. Have a lovely Christmas with your beautiful family.

Tonya xx
Sorrentino-Mari
Member
14 years ago
My dear pink friends, I cannot thank you enough for your clear explanations and constant support. I honestly appreciate it very much!!

I did the CT today and tomorrow I have a meeting with the team again, they will show me the plan. I will have 3 options, 1) Do nothing of radio 2) Do only a buster on the area were the tumor was 3) Have 4 weeks of radio.

So, I will take this time to meditate, sit with my thoughts and take a very consious decision and BE HAPPY WITH WHATEVER IT WAS!!

I am super glad I have you ladies here it really feels great!

Love to all of you

P.S: My husband, baby and I are going to take 6 days off thanks to OTIS FOUNDATION,if you havent check it is worth giving it a try!!!
Leonie_Moore
Member
14 years ago
Leonor, My first "session" was to mop up any stray cells that may have been left behind after surgery. (as far as I knew this was routine) I had clear margins and no lymph node involvement (that they could see). I did not have chemo back in 2006/2007 because there appeared no need to. I was put on Tamoxifen as the bc was Hormone positive. All of my scans etc were good for 2.5years when it was noticed that there was a suspicious lymph node right up under my armpit and around near my back shoulder. (same breast side) Nothing was done for 18 months when it was noticed to be growing. My surgeon removed it but because of the location he could not get clear margins. I was recommended to have radiation first - "to hit the spot". They did a very wide area of radiation - to be sure then I had chemo. My surgeon calls it secondary bc in the lymph nodes but I really think I was unlucky and this little "sucker" was missed the first time around - due to its location. As far as the Radiation Oncologist thinks - I am now cured?????? Who knows but I wanted to give it my best shot!!! It is all about what you think is best for yourself. It might be worth talking to the Radiation Oncologist and voicing your concerns. XLeonie
Leonie_Moore
Member
14 years ago
Leonor, My first "session" was to mop up any stray cells that may have been left behind after surgery. (as far as I knew this was routine) I had clear margins and no lymph node involvement (that they could see). I did not have chemo back in 2006/2007 because there appeared no need to. I was put on Tamoxifen as the bc was Hormone positive. All of my scans etc were good for 2.5years when it was noticed that there was a suspicious lymph node right up under my armpit and around near my back shoulder. (same breast side) Nothing was done for 18 months when it was noticed to be growing. My surgeon removed it but because of the location he could not get clear margins. I was recommended to have radiation first - "to hit the spot". They did a very wide area of radiation - to be sure then I had chemo. My surgeon calls it secondary bc in the lymph nodes but I really think I was unlucky and this little "sucker" was missed the first time around - due to its location. As far as the Radiation Oncologist thinks - I am now cured?????? Who knows but I wanted to give it my best shot!!! It is all about what you think is best for yourself. It might be worth talking to the Radiation Oncologist and voicing your concerns. XLeonie
TonyaM
Member
14 years ago
Leonor,I only had one lot of radiation(lasting 6 weeks)back in 2003.After that.for 6 years, my mammograms were clear.Then last year's mammogram showed a 3cm area of cancer.It was in the same breast,same spot,similar pathology.My doctor says there may have been a stray cell left behind. I think there could be 2 explanations: firstly the supposedly clear margins from the lumpectomy were not looked at properly.Or perhaps the radiation excellerated the growth.I will never know the reason it came back and I've stopped worrying about it cos it does your head in! These are questions you might want to ask your radio oncologist before you decide.

Tonya xx
Sorrentino-Mari
Member
14 years ago
Dear lovely and helpful girls, thank you so much for the clear and useful information. I appreciate the time you have spent in writing it!!

I am still undecided as I can see some examples of ladies who did radiotherapy and they have recurrence anyway. So, it is probably no that accurate as they say? Leonie and Tonya why did you have 2 different cycles of radio? did it came latter in the same breast? in the same spot than before? Do you reckon it is treatment induce?

Thank you again for all your help and support, it is great feeling you ladies so close!!!

Love and light,

Leonor