Starting radiation treatment- need some advice

[Jg1960]

Hi all,

I had a bilateral mastectomy 4 years ago and have had a recurrence. I've had surgery to remove the involved lymph nodes, have been on monthly Fulvestrant injections and take Kisqali. I'm going to be starting 6 weeks of radiation by the end of the month and I am totally petrified of it - to the point that I'm not sure if I will be able to go through with it. The cancer is on the left side and I have heard several stories of women ending up with heart & lung issues from radiation. I know they will teach me some breathing methods to help push the heart away but what if I move unexpectedly while being zapped??? I'm having a difficult time getting out of my own head.

Does anyone have any sage words of advice for me, tricks you used to get through treatment? I'm not interested in taking Ativan or anything like that.

I'm not looking forward to the skin issues that come with radiation treatment either but at least that will heal after treatment. Any suggestions on ointments to use on my skin - Aquaphor has been recommended but I'm not a fan of it - to thick and greasy.

Any and all suggestions are appreciated. Thanks!

[suryakaizen]

Dear Jg1960 please don't be afraid. My daughter underwent radiation for 1 month after breast cancer surgery and chemotherapy. She is well now, taking hormone tabs and going about her daily routine without much problems.

She told me the best way to deal with radiation is to be mentally prepared and not to worry too much. Anxiety aggravates feelings of pain and distress. She said that each radiation session itself lasts only 3-5 minutes. After a few days of taking radiation, you may feel sensations of heat in the radiated area. You may lose appetite. It is possible that you could have gastric problems (she didn't). You may feel extreme fatigue, even more than after chemotherapy (that happened)! After the first few days, sleeping on the side being radiated could become difficult. But you could sleep fairly comfortably in a semi-reclining position with some soft pillows by your side. This will help because other positions can cause the skin on that side to stretch and be painful.

Sending you good energy to come out happy and healthy after this event.

[Jg1960 in reply to suryakaizen]

Thank you

[Vern3]

I have had breast cancer twice, in 2015 and again in 2021. In 2015, the cancer was in my left breast. I was were you are at right now, terrified of the side effects. The possible heart/lung damage kept me awake at night. I wish I knew then what I know now.

The radiation oncologist will determine what position you will be placed. I was positioned face-up. Just before the radiation began, I was prompted to "Take a deep breath and hold." If the machine detected I had taken the proper breathe and was holding, then the actual radiation would happen. If the machine detected an inadequate breathe, the radiation would not begin and I would have to try again. If I accidentally exhaled at the wrong time or I moved (hard to do, you will be strapped in), the session would shut down. I would only have to hold my breathe a few seconds and then I'd hear "Exhale and relax." I was told these measures were in place to minimize any damage to my heart/lungs. For me, this was a surprisingly easy process after all my anticipatory anxiety.

I am fair skinned, so this was also a worry. Both times I came out of it with a slight tan but no skin breakdown. The key for me was regular use of cream before and after each treatment. I used "My Girls Radiation Burn Care Cream" (recommended by my radiation oncologist). I know others who have used Calendula Cream (at least 10% and also another one suggested by my doctor) with the same results. If you can, start applying the cream to the area (several times a day) a couple of days before you start radiation. During therapy, I applied it first thing in the morning. Then right after treatment. After a shower and before I went to bed. Other BC survivors suggested this to me and it worked.

The only other side effect I experienced was fatigue. For me, radiation turned out to be the easiest of all the treatments I have been through. I hope this helps and eases your concerns.

[Jg1960 in reply to Vern3]

Thank you. I didn't think they could radiate you twice in the same area, did your cancer return to the right breast?

[suryakaizen in reply to Jg1960]

No. Its 8 years running and the cancer has not returned to the (affected) left breast nor to the right.

[Vern3 in reply to Jg1960]

Your are right, you can't radiate twice in the same area. I have had breast cancer in both breasts. In 2015 in left breast, Stage1A ER/PR+, Her2-, IDLC. In 2021 in right breast, Stage1A, ER+/PR-, Her2+ IDC. Left breast treatment was lumpectomy and radiation. Right breast treatment was lumpectomy, 12 weeks chemo, radiation, then Herceptin infusions every 3 weeks for a year.

[ba5083]

Your radiologist should suggest the cream to use. Use it liberally. It will make a big difference.

[Jg1960 in reply to ba5083]

Thank you

[AlexWell]

Hi Jg1960, I recently finished 5 weeks of radiation because of a recurrence in my lymph nodes. The technicians prepared a mold using a CT-scan before I started, so they'd be able to place me in the right position every time. They are very good at making adjustments until they get you exactly where you need to be. I could breathe normally and just relax. The doctor recommended the Calendula cream but only after the treatments and at night, never before the treatments. I developed dermatitis during the last week of treatment, but that subsided in a couple of weeks. They gave me a medicated cream to treat it. I hope you can relax during the treatments!

[Jg1960 in reply to AlexWell]

Thank you, I don't think I will be able to relax but fingers crossed

[Katatonia]

The machine they used for me did not work if I moved out of my correct position. They really ensure you do not get radiation in the wrong places. They also prescribed a cream for me to use right after treatment and then again before bed. My skin really only got a bit red at the end, so the cream worked. Also, the actual radiation was maybe 5 minutes total each day, so quick and easy. It seems scarier than it turns out to be.

[Jg1960 in reply to Katatonia]

Thank you, they prescribed a cream to use no more that 4 hours before treatment and Aquaphor for after, but I can't stand the feel of the Aquaphor and have head it didn't do anything for other folks, although some do like it.

[SingingJay in reply to Jg1960]

I used Aveeno. It’s fantastic

[haagr]

I had left sided breast cancer 8 years ago. I also had deep breath holding radiation. If I moved or took a breath the machine turned off. Treatment continued when I was told to rake and hold another breath. It only happened once I the 20 sessions. They successfully kept my heart out of the radiation field. After the 4 weeks of treatment I developed dermatitis which took a month to resolve. Follow their instructions for skin care and use the moisturizing cream the radiation oncologist recommends. Good luck!

[Jg1960]

Hi All, Many thanks for the replys and the positive thoughts. I started radiation about two weeks ago and although I my fear turned into being petrified each time I pulled into the parking lot I focused on putting one foot in front of the other and breathing to ward off a panic attack. Thought I was doing well until I had my first "in treatment with the Doctor. The nurse proceeds to tell me I am not a "happy patient" ....didn't know that was a requirement! The Dr. was in the room as she is saying this and said the Rad Techs are human and take things personally! I replied that I have never been rude to a technician but was definitely not a "chatty patient". I was then informed that I was taking to much time to get through my appointments and I needed to be aware there were other patients to be seen and administered to and that the weekly, check in meetings with the doctor should only take 10 minutes! HOW WAS I TO KNOW THIS? I admitted I may ask more questions than most patients and I apologized , the doctor the said I could ask as many questions as I needed but she has spent more time with me than any other patient. I pointed out that her statement seemed to be a contradiction and I was confused. She then said most patients don't want to know much. I admitted I was aware that there were patient that only wanted to know where to go and when to be there but that has never been me. ( I have met with this doctor several times over 5 years and the Dr. knows of my fear) I explained that I need to know everything so I can make an informed decision on my treatment. I was told that the doctor doesn't have time for that and I just need to trust them. ( as a patient with PTS caused by a medical trauma this does not work for me, which the doctor is aware of!)

I spoke with the Rad Techs at my next appointment and explained (which I though the doctor would have done) that I was very afraid of the process and it has morphed into terror as my start date neared. I told them I was not a "happy patient" because I was solely focused on not having a panic attack. They told me they understood and I was to take as much time as I needed to get through each appointment. They have been great since but I have not met with the Dr. or nurse who blindsided me. I feel their actions are beyond unprofessional and can not believe they took my cancer treatments and turned them around to be about them!

Have any of you experienced any bullying of this type during treatment??? I am dumbfounded by their actions. Any insight is appreciated even if you think I am responsible for this treatment.

Thanks,

Jen

[Jillwithers]

Hi, if I remember correctly I used lubriderm. I started using the cream the week before. I used it twice a day and when I started the radiation. I used it 3 times a day. I only had minimal redness. Maybe you can take your phone and listen to music . I wish you all the best! You are strong! My motto is I am woman hear me roar!!