The information available on the Breast Cancer Network Australia website is not medical advice and is provided for information purposes only. It should not be viewed as a replacement for a consultation with a qualified medical professional. Our website is designed to offer information and support to the general public. Be aware that we do not provide any medical advice, and for medical advice we recommend you speak to a qualified medical professional or doctor. 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- my experience","id":"message:121017","revisionNum":1,"repliesCount":37,"author":{"__ref":"User:user:21284"},"depth":0,"hasGivenKudo":false,"board":{"__ref":"Forum:board:chemotherapy-and-radiotherapy"},"conversation":{"__ref":"Conversation:conversation:121017"},"readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:121017"},"body@stripHtml({\"truncateLength\":200})":" 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 :) ...","body@stringLength":"4279","rawBody":"
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 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
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Radiation - my experience","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:121052"},"parent":{"__ref":"ForumTopicMessage:message:121017"},"body":"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 ","body@stringLength":"196","rawBody":"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 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after skin-sparing mastectomy & diep-flap-reconstruction?","conversation":{"__ref":"Conversation:conversation:262832"},"id":"message:262832","revisionNum":1,"uid":262832,"depth":0,"board":{"__ref":"Forum:board:chemotherapy-and-radiotherapy"},"author":{"__ref":"User:user:5135"},"metrics":{"__typename":"MessageMetrics","views":20},"postTime":"2025-04-03T04:00:41.001-07:00","lastPublishTime":"2025-04-03T04:00:41.001-07:00","body@stripHtml({\"removeProcessingText\":true,\"removeSpoilerMarkup\":true,\"removeTocMarkup\":true,\"truncateLength\":200})":" Has anyone had radiotherapy done after their skin-sparing mastectomy & diep-flap reconstruction? 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I've got wavy coarse hair, that's not particularly thick. Conditioner and water was applied with a focus on the top of the head. 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Unfortunately, I will have a series of...","body@stripHtml({\"removeProcessingText\":true,\"removeSpoilerMarkup\":true,\"removeTocMarkup\":true,\"truncateLength\":200})@stringLength":"203","kudosSumWeight":0,"repliesCount":5,"readOnly":false,"tags":{"__typename":"TagConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[{"__typename":"TagEdge","node":{"__typename":"Tag","id":"tag:breast-cancer-reconstruction-group","text":"breast-cancer-reconstruction-group","time":"2025-03-25T05:02:28.604-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","node":{"__typename":"Tag","id":"tag:breast-reconstruction","text":"breast-reconstruction","time":"2025-03-25T05:02:19.816-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","node":{"__typename":"Tag","id":"tag:radiation","text":"radiation","time":"2025-03-25T05:02:11.822-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","node":{"__typename":"Tag","id":"tag:radiotherapy","text":"radiotherapy","time":"2025-03-25T05:01:39.532-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","node":{"__typename":"Tag","id":"tag:Reconstruction","text":"Reconstruction","time":"2024-10-22T16:42:44.606-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}}]},"timeToRead":1,"images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"videos":{"__typename":"VideoConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}}},"Conversation:conversation:223929":{"__typename":"Conversation","id":"conversation:223929","topic":{"__typename":"ForumTopicMessage","uid":223929},"lastPostingActivityTime":"2025-01-13T00:34:36.000-08:00","solved":false},"User:user:19994":{"__typename":"User","uid":19994,"login":"Angel61","registrationData":{"__typename":"RegistrationData","status":null},"deleted":false,"id":"user:19994"},"ForumTopicMessage:message:223929":{"__typename":"ForumTopicMessage","subject":"Radiation Fibrosis Syndrome","conversation":{"__ref":"Conversation:conversation:223929"},"id":"message:223929","revisionNum":1,"uid":223929,"depth":0,"board":{"__ref":"Forum:board:chemotherapy-and-radiotherapy"},"author":{"__ref":"User:user:19994"},"metrics":{"__typename":"MessageMetrics","views":730},"postTime":"2018-09-09T23:23:50.000-07:00","lastPublishTime":"2018-09-09T23:23:50.000-07:00","body@stripHtml({\"removeProcessingText\":true,\"removeSpoilerMarkup\":true,\"removeTocMarkup\":true,\"truncateLength\":200})":"Hi everyone!!!! 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One thing I found useful and helpful when I was in the midst of active treatment, was I formed a whatsapp group with a bunch of my nearest and dearest. I have 2 friends that I spoke to directly with updates, and then they took turns in posting an update to the group. That way, I didn't have to tell the same things over and over, but the people I cared about (and who cared about me) were all informed at the same time of what was happening, and what was helpful to me at the time (walk around the block, them collecting me to take me to the markets, afternoon visits when I was up to it and wanting company). I could read the updates too but it just took the pressure off. Maybe that could be something that could work for you? Absolutely sending all the vibes to the West (i'm originally from Perth!) and hoping the side effects start to become more manageable for you. Kx","body@stringLength":"990","rawBody":"Hi @FeR Sorry to read you're having a tough time in the middle of this part of the 'journey'. One thing I found useful and helpful when I was in the midst of active treatment, was I formed a whatsapp group with a bunch of my nearest and dearest. I have 2 friends that I spoke to directly with updates, and then they took turns in posting an update to the group. That way, I didn't have to tell the same things over and over, but the people I cared about (and who cared about me) were all informed at the same time of what was happening, and what was helpful to me at the time (walk around the block, them collecting me to take me to the markets, afternoon visits when I was up to it and wanting company). I could read the updates too but it just took the pressure off. Maybe that could be something that could work for you? Absolutely sending all the vibes to the West (i'm originally from Perth!) and hoping the side effects start to become more manageable for you. 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