Cooling caps in Vancouver, BC??

AnxietyGirl85

I'm scheduled to start chemo in a couple of weeks (Feb. 14 - Happy Valentine's Day to me), and at my oncology appointment today, I asked about scalp cooling to keep my hair and was shut down immediately by my doctor, he didn't want to discuss it, he was very abrupt, told me that they'd asked for it and the BC Cancer Agency had said no and that was it, simple as that. He wasn't willing to discuss it beyond that, and seemed quite frustrated that I'd even asked.

(I wasn't surprised by his response, he was also very snarky when I asked about the potential for permanent hair loss with taxotere, his response was, "Well, do you want to keep your hair or do you want to treat your cancer??")

I'd previously asked my cancer surgeon, who said that yes, cooling caps are available here (though she seemed skeptical about them). I also asked the nurse at the clinic this morning (after the doctor stepped out), and she said that she works in the chemo unit and has never heard of cooling caps being banned and doesn't see any reason for it, as long as it doesn't get in the way of other patients and I'm bringing my own equipment.

That's three different answers to the same question from three different medical professionals in the cancer system here, so I don't really know what to do or who to believe. I'm very keen to try scalp cooling, I refuse to believe that baldness is an inevitability for cancer patients, and I know which system I want to use (Paxman), so I'm not willing to just give up on it.

The question for you lovelies is: is there anyone here in Vancouver who has used cooling caps recently or is currently using them, and did you have any difficulties being permitted to use them?? And who should I be contacting about this?? Oh, and what kind did you use?? I can't seem to find any recent information on using them here.

moth

Hi AnxietyGirl, I don't know but you might want to ask this question on the Canadians in BC forum as well for some more responses from local peeps.

https://community.breastcancer.org/forum/55/topics...

AnxietyGirl85

Hi Moth!

I should post this question on that thread, too - just wanted to start my own because that one is HUGE and I couldn't face wading through all the conversations on there. Hopefully, someone has some experience with this in this city.

Meow13

BIG RED Flag! I would change doctors immediately.

I would contact the Rapunzel project and see what they can find for you.

wrenn

Chia?

AnxietyGirl85

No, Villa, very enthusiastic and smiley and perky until you disagree with him, I wasn't impressed, he made me feel small.

AnxietyGirl85

Well, I contacted the BC Cancer Agency about it, and was turned down flat. They ban all scalp cooling equipment in all of their chemo suites in all of their centres, and I didn't get any other responses on here from anyone nearby who may have had some luck with cold caps here.

So good to know that they're progressive here on the west coast.

Guess it's time to make an appointment to have all of my long thick hair cut short.

Meow13

Did you contact Rapunzel project? Or can you contact penguin caps directly?

Expatmommy79

Hi,

I just wanted to put a small remark here for any future Vancouverites. From what I understand, it's still not BC Cancer policy to allow them, but they can't actually stop you.

I know two people now who have used the manual caps in Richmond and Abbotsford.

Mention it to your oncologist that you will be capping. Then don't bring it up again.

Rock up to your infusion ready to cap and they won't say no. It's personal property and nothing more than a head piece. And you are allowed to have support people join you during chemo.

Manual cap not the machine. They can refuse to plug it in but not the manual ones

Don't give them a chance to say no

masha05

Where can I buy Cold Caps for Chemo in Canada?

Moderators

Hi masha! As this thread is a bit old, as suggestion you may want to start your own thread and ask your question also in the Canadians Affected by Breast Cancer. Let us know if you need help with that!

Good luck!

The Mods