Radiotherapy

FLClover said:

You’re very welcome @ChezaH 
I find that sometimes, a lot of detail is necessary for us to understand a process, as info given to us can be too general. I like knowing details, and so therefore like sharing them too in the hope they’ll help others. And I hope my post helps lots more women in the future who need to go through radiation and all the confusion around it. 

Thank you for the well wishes, I am recovering quite well, both physically and psychologically 😊. 

All the best to you too. I hope you breeze through radiation ❤️  

Louise64 said:

@Abbydog mum had invasive right breast and lymph nodes - went from A grade golfer and tennis player to radium, radical mastectomy, chemotherapy- then metastatic... last chemo to see my brothers son born . I only had high grade DCIS 3.5 cm but had calcification 2 years earlier 1.5 inches  below this one as had titanium clip in both after VAB. I’ve been having yearly mammograms since 40 as mum was 49 when first diagnosed. I rang and got appointment in May as closed in March when usually have- very lucky. So encourage everyone to tell a friend to book in if they’ve put it off this year. So lucky for Breastscreen Qld. Anyway - mine is in left breast so no guarantees. I honestly wouldn’t do radiotherapy again. I’d do double mastectomy. I’m still quite flat and now burns healed and inflammation at last going down the lumpectomy breast at least 1-2 inches smaller . Luckily with large breast not so obvious- but is to me. Considering contacting psychologist as still not motivated and not looking forward to going back to work. The unknown and what ifs and knowing first hand what mum went through can’t really be dismissed. I’m looking at big life changes- job, house, state as don’t want to waste time. Bit glass half empty and I want a full life .. whatever comes next 😊

FLClover said:

Hello @ChezaH, 
the Mepitel does work best on mastectomies, as it obviously sticks better to flat services. I had a double mastectomy and needed both sides irradiated, however I have tissue expanders in, which are possibly worse than natural breasts for this sort of thing because they stay pretty upright and perky even when I am lying down. Plus my breast size is about DD, which isn’t that big but also not that small. So there were two rockmelons to cover, and let me tell you it was no easy feat. The first time the nurse put it on it took about 40 mins. It was during winter, but I sweat a lot even just walking, so it kept coming off too soon. After the first week the nurse even said they might not be able to use it if it couldn’t stay on. Also, when I arrived at my first appointment with it, the onco therapists just looked at me like ‘wth is that??’, and didn’t understand that I needed it on before the treatment. One of them told me that in 20 years of that job, he’d never seen or heard of Mepitel. But I insisted, and told them my onc said I could use it, and I looked pretty desperate, so they asked the nurse to apply it after checking with my onc., who confirmed she had agreed to its use (I realised everything was not as organised as I thought it would be - they get pretty busy and don’t always communicate regularly with each other). Luckily, another therapist that was there the next day had experience with it, and she explained to everyone what it was etc. After that they were more understanding and made appointments for me every Monday before treatment to have it reapplied for the week. I also kept telling the nurse sorry whenever she had to reapply or patch it up, as I knew it was a massive bother, and she told me it was fine, then she’d put it on really nicely and we’d have lovely chats. Another nurse told me I was very kind when observing her work, which I then understood meant other patients would yell at her about putting it on properly. 

I promised them all I’d try to stop it from peeling off too quickly by slowing down my walking and avoiding getting it wet in the shower. 

As I was sometimes late, there were a couple of treatments I had without it on, but it didn’t make a difference luckily. However, it usually takes more than 10 treatments to see symptoms, so it will look like everything is ok the first few times, but that doesn’t mean it’s not burning. After I finished my treatment, my oncologist and nurses said they would definitely recommend it to all patients from then on, as they could not believe how good my skin looked. They were in complete awe. I was surprised at how surprised they were. One nurse even stopped to tell me that when she saw me in line for the hospital. They said I converted them and they were really happy with my results. I’m also really happy, as my skin healed so well and I only had pain for a couple days on uncovered areas. 

My point is, it’s fiddly and very annoying, for both the patient and the nurses. My guess is that many patients complain about it coming off and some may not even be very appreciative of the effort needed to apply and patch it up, so it may be a massive nuisance to a lot of nurses. I only noticed them being more tolerant of it after I showed a lot of gratitude. I’m guessing not everyone does. So it’s easier for them to just use a cream or even nothing. But they are not the ones suffering from the possible horrific burns and pain afterwards. So I’d say a lot of persistence, understanding, tolerance and gratitude is necessary from both sides for it to work, but it’s definitely worth it. Also, a lot of nurses are genuinely not familiar with it and don’t know how to apply it. I find this is the case though in a lot of areas, not just radiation. So I’ve had to be my own researcher and biggest support in making sure I get what I want and need. 

I’m sorry this post is so long, but it’s a very fiddly subject, just like the Mepitel itself. It’s very grey, not black and white, as many areas of life are. I find the reasons for certain things sometimes are completely different to what appears to be obvious. So good luck with it, I’m no doctor, and maybe you don’t need it for olive skin or only 16 sessions, but I would ask for it anyway. We are receiving extremely aggressive treatments, and my rule of thumb is always use what is available for prevention, especially if it’s harmless, instead of having to cure later. 

All the best 🍀❤️

Louise64 said:

@Abbydog slow process but healing- back to surgeon 4th November for MD team decision on hormone therapy. My mum was on tamoxifen for years - when they took her off them - cancer metastasised and killed her. Another decision I don’t want to make. If you’d told me in May when diagnosed what would happen and how long I wouldn’t have believed it. 

Louise64 said:

@ChezaH I’m 2 weeks post radiotherapy and used StrataXRT first 10 sessions was great but then stopped as not effective. Because of lumpectomy and large breast the mepitel film wasn’t option but had mepitel foam on and off last 5 of 25 sessions. My advice do what head nurse says then ASK during process what else. I wish I’d spoken up about session 14 to my radiologist. I’m good now but would definitely have asked for options along the way as care team there for you . Thinking of you on the journey- different for every individual. 💗💗💗💗