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
- Golly Gosh, that's a bummer your skin broke down like that .... I hope the Onc will check up more on his registers more .... tho I am surprised the Rad Nurses didn't pick up on it as well! I saw them every 3-4 days & they checked the level of burns...
My skin that had been badly sunburned as a kid/teenager went like acne spots/lumps that made me more aware of adding more lotions & potions & it didn't get too much worse .... tho the spots/lumps did break down.
Also be aware of not wearing 'too thin' tops, as the whole area will also be quite sensitive to UV/Sun rays too for at least a month - maybe 2 months - and the area will also remain quite warm for about the same time too. Just keep using the creams whilst it is still warm, I reckon.
Take care xxx - Hi Everyone,
10 days from last radio , 25 all up.
My experience was better that chemo by far except for the last week, my skin gave up despite all the cream care which you HAVE to do.
I ended up in hospital to manage the burns on the skin and the pain , apparently I got the chronic burn due to my skin already being sensitive due to 6 months of chemo.
The radio team was great , however I had a registrer not my oncologist check my skin and he missed the chronic signs, even though I went there 2 days in a row cause I couldn't stand the pain , all he suggested was to increase the pain meds.
Luckily I had to see my oncologist on the 3 day , I walked in the office , he admitted me to hospital straight from his office.
3 days with morphine and dressings for 3 rd burns , was allowed out 3 days ago.after 5 days in hospital.
It has been mentally harder to deal with that everything I have gone through so far, so my advise , keep seeking help if skin goes a dark maroon colour you develop any blisters and if you can't stand even cool water touching it, watch for any little yellow scabs.
Don't want to alarm anyone , but I was told it was just going to be a bad sunburn, it wasn't so better to know worst case so you know that you are not been a chicken in regards to pain if it gets too much.
I have been told by my GP it will be about another month before I can stop using the Flamozine cream .
Like I said the getting zapped not a big deal , I wasn't uncomfortable at all about having no top on , double mastectomy , the radio guys all super professionals and go out of their way to make you feel relaxed.
I guess it just depends how you treat people is how you get treated back , the easier you make their job , the easier it goes on you.
Good luck to whoever is next. - Talking about music..my first day of rads they played.."my momma told me there'd be days like this " by van morrison ...still have a laugh..
- I used the Udder Cream - it came in the oncology pack.
- Quick question, does everyone use Moo Goo udder cream or the moisturiser cream?
Thanks in advance - @KateM Check out this recent thread. K xox
- Hi everyone,I just wanted to add something to my original post but not sure if I can or how to do it.Between planning and about the third week of radiation (which would have been around six weeks) I lost almost 5 kilos. I did not try to lose any weight during this time (however during 'normal' life I spend a lot of time agonising over my weight and how to lose the excess). Anyway, my point is that when I made a general chit chat comment to the radiation therapist she said that if I lost too much they would have to do the planning again. She didn't say how much was too much weight, but the thought of having to go through planning again and have the radiation window extended further was not at all appealing to me. I interpreted this information as a sign to eat all the ice cream ::smile:So just be aware that if you do lose (or gain as well I guess), it may impact the original planning.Hope you are all having a lovely Sunday afternoon.
- It seems that everyone says something different about the Mepitel. I was told to leave it on for the whole treatment but that I could take it off on weekends if I wanted to. It was patched once and came off at the end of treatment.
- Hi everyone,
Just an update, I have some redness coming out now (one week yesterday since finishing rads) an area about 5cm x 2cm which gets a bit itchy and hot if I get hot, eg, while gardening or housework, the gardening is totally worth it though :). I am using a lot of moogoo and other creams that I purchased in preparation. I don't know if it is because the mepitel is coming off though and I am not going back to get it patched up, even though I was suggested that I could do this, I am really enjoying being 'free' from treatment at the moment and don't feel like going back yet!
@Wonk , I was told to leave it on for two weeks as the skin would still be sensitive and the side affects (red skin with possible blisters) 'peak' two week post treatment. It is just coming off on its own.
@Finch, yes, I love birds and love your username as well. I find walking around in the bush looking for birds is so calming (well, except that one time that I disturbed a wild pig!!), I have to listen and watch to locate them.
@Chris51 Best wishes with the remainder of your treatment.
@Mantis Hope your planning meeting goes smoothly. - Hi @LIttleBlueWren thanks for your informative post. I am Day 6 rads using Mepitel. Have so far been re-wrapped/patched 4 times by 4 different people. Sometimes the radiation people didn’t like the way it was done as it changed the shape of the breast compared to the original wrapping. Other times it just started peeling, especially in this heat. I am having cooler showers so as not to generate too much steam (and of course being careful not to get this side wet). My biggest hate in life was getting half undressed for my 2 yearly mammogram when just 1 person would see me. Now it feels like 100 people have seen me in 2 months! The best ones treat you with respect and attempt to cover you except when absolutely necessary to uncover you. One guy always says ‘excuse me’ before he lifts my gown which is nice. I know it’s not a big deal for the staff, but it is a big deal for me. I didn’t know that I would need to leave the Mepitel on after treatment. Is there a reason for that or are you just waiting for it to come off itself?
Thanks and all the best. I am interested to know about you Tamoxifen experience when you get there. Enjoy no more rads!
