Forum Discussion
Radiation - my experience
Hi Everyone,
I finished 25 sessions of radiation on the 3rd Jan 2019 and thought I would write about my experience of the whole process. It will be a long post, so get a cup of tea ready :)
Going in to this I was not sure how I would go with rads as I was really concerned about two things: 1 - the out of pocket costs and 2 - being semi-naked on the table (yes, I know this is a bit of a weird one to be worried about).
Out of pocket costs:
I advised my medical oncologist that I might ask him for a referral to a public hospital as I was not sure if I could afford the private out of pocket costs for radiation. He suggested that I meet with the radiation centre and find out about costs first and then decide, I was happy to do this as I felt really comfortable at this hospital. The radiation planning meeting involves three meetings - nursing, positioning and finance meetings, so I requested that I have the finance meeting first as I didn't want to go through the process unless I knew I could afford it.
The total cost for radiation was just under $20 000, however I was put on a payment plan so I did not have to pay anything up front. My total out of pocket expenses for the 25 treatments was $2000.00, and I was able to pay this in weekly instalments via direct debit. The radiation centre at the hospital handled all medicare transactions. I was really happy with the arrangement.
From this experience, I learnt that it is worth mentioning up-front if cost is an issue, it seems to me that there is some flexibility around how you pay and maybe even the amount you pay (not sure though). I guess at the end of the day it is a business and we are the customers (that don't want to be customers!) so our business is important to them.
At the nursing meeting, I was given a gown to use and keep and I also received a 'goody bag' of creams, soap and sunscreen and while I understand that the gown is most likely their way of reducing laundry costs, it did make me feel special.
Mepitel was used on me for the duration of treatment and is still on me as I type this out. I am to keep it on for two weeks. I have a small amount of redness outside of the the mepitel area.
How I dealt with the 'semi-naked on the table' bit:
I get that this is not a big deal for others, however for me, this was almost a deal breaker - the idea of lying on the table with no top on, all the bright lights on me and knowing that the image is projected on screens outside the room just makes me feel kind of sick, I really did not think I would go through with it. Just writing about it makes me feel uncomfortable.
So, I purchased 'baby blankets' from K Mart for $10. I took one to the planning meeting to test out the reaction I would get. I covered myself up with it and asked them to only move it when necessary - and they did! I took my blanket to every session after that and felt a bit better about the whole thing. At each session I had my blanket on me and they only moved it around to confirm my positioning was correct and then I was covered for the duration of the actual radiation. I still hated the situation, but I got through it. There was one radiation therapist that seemed to leave me uncovered unnecessarily, but I didn't have her very often. I just made a point of covering myself when she did this, which of course is a bit naughty as you are supposed to keep your arms up.
The other great thing was that I was able to request only female therapists and this wish was granted as well. I also refused to have my face in any of my planning photos, it just meant that I had to say my name etc each time.
The take away from all of this is ask and be your own advocate, if something makes you feel uncomfortable speak up. The people treating us have probably never been through this and don't understand how vulnerable one can feel.
I hope that this long-winded post can help someone else who is about to go through radiation.
Next step for me...tamoxifen
Hugs to all of you wonderful ladies and guys on this forum
I advised my medical oncologist that I might ask him for a referral to a public hospital as I was not sure if I could afford the private out of pocket costs for radiation. He suggested that I meet with the radiation centre and find out about costs first and then decide, I was happy to do this as I felt really comfortable at this hospital. The radiation planning meeting involves three meetings - nursing, positioning and finance meetings, so I requested that I have the finance meeting first as I didn't want to go through the process unless I knew I could afford it.
The total cost for radiation was just under $20 000, however I was put on a payment plan so I did not have to pay anything up front. My total out of pocket expenses for the 25 treatments was $2000.00, and I was able to pay this in weekly instalments via direct debit. The radiation centre at the hospital handled all medicare transactions. I was really happy with the arrangement.
From this experience, I learnt that it is worth mentioning up-front if cost is an issue, it seems to me that there is some flexibility around how you pay and maybe even the amount you pay (not sure though). I guess at the end of the day it is a business and we are the customers (that don't want to be customers!) so our business is important to them.
At the nursing meeting, I was given a gown to use and keep and I also received a 'goody bag' of creams, soap and sunscreen and while I understand that the gown is most likely their way of reducing laundry costs, it did make me feel special.
Mepitel was used on me for the duration of treatment and is still on me as I type this out. I am to keep it on for two weeks. I have a small amount of redness outside of the the mepitel area.
How I dealt with the 'semi-naked on the table' bit:
I get that this is not a big deal for others, however for me, this was almost a deal breaker - the idea of lying on the table with no top on, all the bright lights on me and knowing that the image is projected on screens outside the room just makes me feel kind of sick, I really did not think I would go through with it. Just writing about it makes me feel uncomfortable.
So, I purchased 'baby blankets' from K Mart for $10. I took one to the planning meeting to test out the reaction I would get. I covered myself up with it and asked them to only move it when necessary - and they did! I took my blanket to every session after that and felt a bit better about the whole thing. At each session I had my blanket on me and they only moved it around to confirm my positioning was correct and then I was covered for the duration of the actual radiation. I still hated the situation, but I got through it. There was one radiation therapist that seemed to leave me uncovered unnecessarily, but I didn't have her very often. I just made a point of covering myself when she did this, which of course is a bit naughty as you are supposed to keep your arms up.
The other great thing was that I was able to request only female therapists and this wish was granted as well. I also refused to have my face in any of my planning photos, it just meant that I had to say my name etc each time.
The take away from all of this is ask and be your own advocate, if something makes you feel uncomfortable speak up. The people treating us have probably never been through this and don't understand how vulnerable one can feel.
I hope that this long-winded post can help someone else who is about to go through radiation.
Next step for me...tamoxifen
Hugs to all of you wonderful ladies and guys on this forum
37 Replies
- Thanks Karyn - think I am over the worst. The itchiness was the worst but seems to have settled down now. Fortunately no open wounds just a slight bit of blistering and dry skin. I was thrown a little as I thought I had sailed through so smoothly during the actual rad treatment. Like all of of us just desperate to get to the ‘other side’! I have found this site a great sounding board and very reassuring at times - again my thanks for sharing your experience. 🌹🌹
- @Chris51 my treated area got a lot worse after treatment finished. It was starting to ramp up during the last week and then went wild after rads were over. The nurse predicted I would feel a whole lot better at the 3 week post treatment mark. She was spot on! The difference between one week and the next was amazing. I was fretting it was going to get worse and more painful and then, it just started healing quite quickly. Keep up with the creams. I was also given Cuticerin strips and non woven Combine roll by the rad nurses to place over the wound. Another product I found extremely helpful was silicon based Mepilex Border Flex "band-aids". They are hideously expensive but can stay on for a few days. My skin reacts terribly to normal band-aids but with the silicon I had no reaction at all. Best wishes to you.
- On the advice of another BCS I used paw paw cream and got no blisters and neither did she.@Silba sounds like your experience was challenging to say the least and hoping you will heal quickly
- Thanks for that Little Blue Wren - maybe I am over the worst, not that it has been too bad. I thought I was being got back for having it too easy during the treatment!
- I was also initially embarrassed at the thought of being topless during radiation. After a bit I lost that. I found the staff both men and women so kind, capable and professional. I have since learned I could have asked for women only staff. I think this should be publicized more. Good luck with the next stage.
- Hi @Chris51Mine went away in about ten days. The pain subsided (it wasn't that bad to begin with) after maybe a week and then the skin peeled a little bit. The area is pretty much back to normal (pale white) colour, however there is a section of skin below the scar that is now red but not sore. I finished rads on the 3rd Jan 2019.
- I finished rads 2 weeks ago now - really didn’t have any issues during but the week after finishing saw the redness & itchiness come out. Have been applying sorbeline 3 times daily as suggested by rad nurse. How long does it take for this to go away? I think I have probably got off pretty lightly when I read of others experiences, but am really ready to put this episode behind me and try to move on to a bit more of a normal existence.
I couldn’t believe after cancelling 2 previous short holidays due to surgery/treatment & appointments we finally booked another thinking we were ‘free’ for a while and then received notification that one of my appointmenrs was changed and of course it clashed with our trip. At least this time I felt in a position to assertively state that I couldn’t make this appointment and of course they were not thrown at all and just found another date that suited. The appointments just seem to keep coming - can’t wait to get to a point when I have a longer stretch than the daily/weekly appointments of the past 4 months! - Thank you for the kind thoughts, the skin is healing slowly , fascinating change of colour on a daily basis, amazing what the body can do.
Hardest bit having to deal with was the internal dialogue in the head, but getting there.
We just have to continue...... - @Silba
Sounds like an awful experience, hope the skin heals as quickly as possible.
My burn area (very minor) has healed up, there is an area of skin that is red but not painful, I actually think it is because I have to wear a bra all the time combined with the hot weather.
I have been pretty 'lucky' with my response to each treatment so far (touch wood) though. - Oh wow @Silba,
That's just awful. That Flamazine is pretty good stuff though. My burns were no where near what you have been through but it did work quite quickly, Hopefully it doesn't take too much longer to start healing up..
The sun sensitivity can go on for a long time as well. Paclitaxel made me very sensitive to sun (which hasn't worn right off) and where I had the rads on the supraclavicle nodes has to be covered at all times or I can feel still feel the burning sensation. That's 17 months later. Grrrr.
Hope you start to feel better soon.
xoxoxo
