Hi
I’ve just had my hospital appt and have been surprised that I have to go back on Wednesday to have a face mask made. I will then wear this mask at each session.
The clinical onc (not my usual onc) has explained that the spread in my neck in quite high up (not where BC usual travels to) and the face mask will avoid having tattoos on the face.
Has anyone else had one of these masks? Do you feel claustrophobic with it on?
My other question is this. So far, having had 4 months of chemo (didn’t work) I kept my hair. Now I’m told the radiotherapy could results in patches of hair loss. Everything I read implies this is permanent hair loss - can anybody tell me any different.
Many thanks and good luck to all currently undergoing treatment
I’ve just come back from having my 24th radiotherapy treatment for meningeal met. I’ve had 15 whole brain treatments and 9 boosts directly to the met. Tomorrow is my last one!
I had a facemask made too - in Oxford it’s made of this lilac plastic ‘grid’ material which they heat to make it soft and pliable. They then place it on your face and very gently mould it to your face. I found it all very relaxing but I’m the type of person who dozes off in the MRI… I have worn the facemask every time and never found it uncomfortable. It makes sure you can’t move your head so you can relax. They normally have to put some pen marks on my neck but they wash off okay.
Hair loss - as I’ve had whole brain treatment my hair started falling out all over at the end of week two. I had it shaved off as I couldn’t bear all this hair everywhere. So far I have quite a few bald patches - I’ve been told it may be permanent but it’s not definite as treatments are now delivered in small doses so are not as aggressive as they used to be. Best people to ask about your individual case are the radiotherapists.
Thanks Kate - good to hear you’ve got just one more to go - another hurdle done and dusted!
Thanks for the description of the mask - I just hope I don’t see myself with it on - I can see me getting the giggles!
I will now go into my kitchen and attach a jelly mould to my face - I think I’ve got a rabbit shaped one (it could catch on)
I like your ‘easy peasy’ terminology - like you say its got to be better than chemo.
Hello Linda, I had cyberknife stereotactic radiotherapy for skull mets, and I had a mask. I don’t know if it will be the same for you, but they made a mould of my face. I seem to recall it went on warm and then set as it cooled. It’s a rigid mesh, so you can see out of it and breath normally etc, but during treatment they hooked it to a bench so that my head was restrained in one position.
It didn’t bother me, and my cyberknife sessions each lasted around three hours, so as your sessions will be much shorter, I wouldn’t have thought you will have any problems (I assume you are having conventional radiotherapy).
As to hair loss, it’s true that radiotherapy peramanently destroys hair follicles if it comes in contact with the scalp (I have lost three areas of hair on the right of my head, but am trying to conceal these by arranging hair over them), but as yours will involve your neck, it seems unlikely.
that’s what i thought Lemongrove, i thought radiotherapy only killed the hairs in the area which is being treated. So when i have rads on my axilla i won’t have to shave my armpit again, bonus! still have to shave the other one though! So hopefully Linda, unless ur head is being zapped as well u should keep ur hair, that’s my understanding of it anyway. Good luck with the mask x
Hi Lemongrove and HJV
Had more of a discussion today and the way Lemongrove has explained the mask is just how I’ve been told (and also seen pictures now). I’m glad I’m being ‘pinned’ down - less chance of me wiggling about!
Lemongrove - I assume I’m having the normal radiotherapy - I never asked. Does this sound right for BC in the cervical lymph nodes?
As for hair loss - I must be being zapped on some part where I have hair as the Onc told me I might have patchy bits.
Anyhow - just looking forward to it starting, fingers crossed it gets rid of this neck pain
Although you haven’t got any hair on the area you’re having treated you might have some where the beam exits, depending on its angle. I suppose that could be where you might lose it from?
I hadn’t realised that the beam actually goes right through to some extent - I had a red patch on my back as did some others on here, and also some achy pain in my back a couple of weeks later caused by the exit path of the beam, just like the pain you get in your nuked boob. My onc said it’s perfectly normal.
Hello Linda, I would have thought your doctors would have told you if they were using a different type of radiotherapy. In my case I had Cyberknife stereotactic rads for my skull mets, and conventional rads for the mastectomy site, and the lymph nodes under my arm/ neck area.
In my case the cancer had actually burst one of the lymph nodes in my neck, so after they removed all the nodes they gave the area a good blast of rads.
The only reason I queried whether you are having a different type of rads is because you mentioned hair loss. It’s just that if you have been warned that you might lose some hair it sounds as though they are going close to your head (and they don’t usually use conventional rads on the head). However, the lymph nodes in the neck do go quite high up, so maybe the radiation might just touch the hair around your neckline (but that will be easy to cover up).
Just one more thing, about Alto’s comment concerning exit points. Just want to say that with Cyberknife you don’t get exit point damage, because it fires hundreds of beams from numerous directions, and each of those beams are too weak to damage heathy tissue. It’s only when the beams collide in the centre of the tumour, and their effect is multiplied, that they cause massive damage to the cancer. As the beams exit the tumour they become individual again, and too weak to cause damage.
Having said that, cyberknife would not be used on MX sites, as the area is too large - but for people with small tumours in inaccessible tricky areas, it is potentially a life saver.
Hi Lemongrove
Thanks again for your input - I love reading your responses - I could do with a ‘mini you’ to take into my meetings and then let you ask all the questions for me!!
Anyhow - had my mould fitting today. No problems whatsoever - but how bizarre. After they’d lifted the mould off my face I went straight to the mirror -I felt like I’d been in a sci fi film and felt they might have given me a new face - sadly not! (Yes - I have a vivid imagination)
I’m sure if I was having something other than conventional rads they would have said - anyhow I just want to get going now.
I can’t believe you had 3 hour sessions - thats a hell of a long time - you really have been put thru the mill.
Alto -thanks for your reply - I get what you’re saying about exit points. I think I’ll just have to wait and see
Once again thanks for your input
Hi, linda. about your mask question, maybe i can help to explain it more clear.
The mask’s name is thermoplastic mask. it’s commonly used during the radiotherapy for fixation your body, with the thermoplastic mask the therapist no need mark on your skin but can mark on the mask to fix the position of the cancer. About the moulding that upstairs mentioned is only need to make it once, then the therapist will use the same one continually during the following radiotherapy. It’s comfortable, will not give you any special feeling with it on.
For some pictures and more details of the mask, you can visit one thermoplstic mask’s factory website.
Grensuny medical renfumed.com