Abit of back ground from myself, I’m 31 and was diagnosed with triple negative breast cancer nearly a year ago.
I’ve had 6 months of chemo and immuno, a mastectomy and diep recon, full Axillery clearance (2nd op when sentinel nodes from mastectomy tested positive for cancer).
I’m due to start 15 sessions of radiotherapy tomorrow and just wondered if anyone has any kind words/ tips on how to manage symptoms/ what symptoms they had and how to manage?
Avoiding dr Google and cannot read another leaflet at this point!
Hi,
I think I will probably be starting RT in 1-2 weeks time - hope not too late after lumpectomy on 11-Jan. It took me a long time w no sleep and lots of tears to read thousands of pages to decide to go with RT or ask for a completion mastectomy, and I am still debating, but need to decide tomorrow not to miss the deadline for RT being of use.
Here are my notes for RT:
• 4L of water per day
• Stretch chest & shoulder exercises – daily for life
• Mepitel dressing during RT sessions protects the skin from burns and desquamation
• Mo-goo lotion/cream (Holland and Barret, Mo-goo website, Amazon) use 4 times / day
• NeoGenisis Recovery Serum 70% S2RMs, alongside their barrier renewal cream & moisturising mist
• Glaxal Base moisturising lotion 4 times / day
• Mobiderm pads and/or bra if develop fibrosis
• High-dose tocotrienols (annatto plant-based form of Vit. E) – may need to stop during RT – check with Oncologist
• Aquafor cream (Vaseline-based)
• Hydrocortison (if itching badly)
• Silverdene – for severe burns
• Aloe vera gel or cream
• Calendula oil
Eat more Protein (chicken and fish, nuts, white button mushrooms) and veg/greens.
Hello, I had 20 sessions and after chemo I found it relatively easy. It was a faff getting there and then in position, but over swiftly. My skin was ok, just used a bit of plain moisturiser, nothing special. I got weary towards the end, but worked everyday. I did find the later in the day you went, the more behind they got with timing. I asked to go early, and that worked better, less hanging around. Best wishes and hope you whizz through it quickly.
drinking lots of water helped me on fatigue front I had 15 and 5 boosters, did start to fall asleep in afternoons by about number 12 just would dose off watching tv. There are lots of creams you might have to try a few but some that a lot have used Moogoo, Aveno and I used dr organics tea tree and calendular (think that’s how it’s spelt) it was a gel and I kept one in fridge and one in bag and slapped it on but not before rads skin had to be bare. Just wore a vest top so nothing rubbed on skin. Your team will keep eye on you and usually give you some maxi honey if they think you need it. If you are driving ask your trust in the rads bit if they do free parking for rads attendees, back in 2018 my trust did do worth you asking Shi xx
Hi
I had 9 sessions, the last one was on 14th January. I always took a bottle of water with me and my moisturiser which I applied before getting dressed after having treatment. I used flamigel which you can buy off Amazon. I moisturised 3 times a day and have had no problems with peeling or blistering. I had some redness for a few days and the treated breast was a bit warm. This soon passed. I have not had any fatigue whatsoever. I just have a slightly suntanned breast. I found it a breeze compared to chemo.
Thats a long list and somewhat extreme. They tell you not to use any moisturiser for a couple of hours before RT. Whatever makes you feel happy I suppose after. You wouldn’t be able to use mepitel during treatment as the area has to be bare. It would only be necessary if skin has broken down after. You seem to be preparing for a lot of things that most likely don’t happen. I didnt have breakdown of skin despite generally having sensitive, pale skin and large E cup breasts. I can get behind the lymphodema bra, I doubt any cream can protect against that, a supportive bra and regular massage should that happen.
Drink plenty of water and moisturise in between sessions, it doesn’t have to be more complex than that.
I finished in mid January. I still have some redness but am keeping up with the moisturiser. I have never peeled or blistered and my skin is delicate. I am still slightly swollen in my breast.
Below is my experience but I understand everywhere is slightly different depending on machinery and protocols.
Be prepared to be lying in a strange position for around 20 minutes. You may well need to be bare from the waist up so be prepared for that as well. You can ask for female only staff and explain you would like to be as covered up as possible. You may be able to wear your own dressing gown but it will probably need to be taken off for during the treatment. The equipment is hard and at slight angles to get you in the perfect position. The room can also be a bit on the cool side although my letrozole tends to keep me warm!
I was given medihoney by the staff which is good for the burning. I applied it as I got dressed after each session (you should not apply it just before).
I also used Aveeno which I keep in the fridge. I understand using upward motions when you apply can help with swelling (moving excess lymph towards your lymph nodes) but go gently.
I kept exercising and this seemed to ward off fatigue.
I also got stabbing like pains which is apparently normal. They are brief and infrequent for me.
You can ask the staff about the treatment and they should be able to help with any concerns.
I didn’t do much to prepare to be honest. I’ve just had session 14 out of 20 today. I use MooGoo and Flamigel and I’ve been prescribed hydrocortisone cream today as my chest has been itchy. It’s slightly pink but nothing major.
I am not able to have any kind of cover on me for treatment, which I detest with a passion and massively struggle with, but that’s a whole other post
I’m walking every day, even when I seriously CANNOT be bothered (sometimes just walking around the house for a bit!) and doing my arm exercises religiously. I do feel shattered, but I have quite a lot of travel to my appointments which is contributing to the fatigue I think.
I was a similar age to you when diagnosed and out of everything I found radiotherapy the easiest to deal with. I took myself there and back most days on the train. I also had 15 sessions. As the ladies have said make sure you are drinking! I am not a good water drinker and I was exhausted after 2 sessions. Quickly realised I wasn’t drinking enough and this made a huge difference to my fatigue.
I just used what the hospital gave me after each session but made sure I had nothing on before my session. I did get some redness/burning but they kept a good eye on me and have no lasting redness or anything.
Once you get halfway it flies in but I do remember the first few days thinking I really don’t want to do this 15 times!!
I also found my hospital was very organised. There was way less waiting around (compared to chemo anyway) so this helped as well.
I hope all goes well for you. Remember most people have very few side effects- let’s hope you are one of those people
drinking lots of water helped me on fatigue front I had 15 and 5 boosters, did start to fall asleep in afternoons by about number 12 just would dose off watching tv. There are lots of creams you might have to try a few but some that a lot have used Moogoo, Aveno and I used dr organics tea tree and calendular (think that’s how it’s spelt) it was a gel and I kept one in fridge and one in bag and slapped it on but not before rads skin had to be bare. Just wore a vest top so nothing rubbed on skin. Your team will keep eye on you and usually give you some maxi honey if they think you need it. If you are driving ask your trust in the rads bit if they do free parking for rads attendees, back in 2018 my trust did do worth you asking 
