Hi
can anyone who has had WBRT give me some ideas of side effects they have experienced? I am meeting the consultant on Monday and want to have some idea in advance what to expect. I am expecting to lose my hair (again) but have no idea if it will grow back or not but other side effects I have no clue about, I guess fatigue as with all RT but what else?
Thanks
Spikey
Hi @Spikey sorry you haven’t had a response yet, I’m hoping someone will come by over the weekend to help you. If not, you could try calling the Breast Cancer Now nurses on Monday morning? 0808 800 6000 - open from 9am x
Hi Spikey
I haven’t had WBRT. My Oncologist wanted that for me post a craniotomy in which a different more distant hospital were only able to remove under 50% of a solitary large tumour in my parietal lobe. However, ultimately I had IMRT instead via VMAT to one side, which I was pleased about in case of damage to my hippocampus. We may have to revisit WBRT though due to poor information sharing from the hospital that did the surgery, supposedly a centre of excellence for neuro-oncology, who relied on a hand written letter to make the referral, which took weeks to go out, thus increasing the likelihood of microscopic spread of cancer cells during the consequent delayed interval between surgery and radiotherapy.
I found the mask making and 5 days of treatment a breeze compared to IV chemo. 3 weeks later I am suffering extreme fatigue and partial hair loss in that I look a bit like a monk, meaning I have to keep shaving the sides in order to wear chemo caps or the wig I was provided with 3.5 years ago. I guess with WBRT you will more likely lose all your hair which is easier.
There is information about VMAT on this link , albeit I had mine done at my local hospital who I believe use it a lot for other cancers such as prostate Scientists investigate a new therapy for breast cancer that has spread to the brain | Breast Cancer Now
There is a facebook group called ‘Breast Cancer with Brain Mets UK’ several people have shared their experience of WBRT and of STRS or Gamma Knife radiotherapy.
I really hope this is helpful and that all goes well. I honestly found radiation to brain eaiser than to breast area and haven’t had any skin burns.
Best of luck and do ask your Consultant why s/he is choosing WBRT and if you dont understand anything. I had a long list of possible long and short term effects on my consent form but couldnt read the writing and mistakenly read ‘sickness’ as ‘seizures’ nearer the time so wish I had taken notes!
Good luck with it
Abemified
PS My brain isn’t functioning well i meant a ‘hard copy letter’ , not ‘hand written’ above. It was originally dictated. I just don’t know why they are not sharing info between hospitals sharing care virtually in the first instance when time really is of the essence with lives at stake.
Thank you for all this info, I wasn’t aware of some of the other options, I was discussed at addenbrookes for potential steriotropical radiotherapy but they decided WBRT was a better option, presumably the MRI I had shows more areas of concern than the one seen on CT. I’ll look at the other RT you mentioned before my appt tomorrow so I am armed with questions!
I had RT to a met on my dura layer (back of head) a year ago so I know what you mean about looking like a monk as I have hair missing over 2/3 of the back of my head! Chemo I’m not struggling with currently and I’ve just had my 25th weekly session!
Spikey
Hello, I know a few ladies who have had it. They have had sickness, the hair loss and extreme fatigue. I guess the only thing you can do is not book stuff for afterwards and ensure they’ve given you all the sickness drugs in case. I don’t think it hits you straight away. I think sometimes it can be three days later. Let’s hope your one of the lucky ones and sails through it.Xx