Hi I have recently been diagnosed with grade 3 breast cancer. I am due to start chemotherapy on 4th October. I have opted to try a cold cap has anyone had any experience of using one ?
I have just been told this afternoon I'm having chemotherapy lucky me ! I'm not going to have the cold cap as I'm not sure it will work on me. And it's uncomfortable I have had a shock today I did not expect my Oncotype score to be so high so it's chemotherapy for me to prevent the cancer coming back . I also have grade 3 cancer have you had surgery yet?
Hi Diane my score was 38 and it's going to be EC which is epirubicin and cyclophosphamide whatever that is . My daughter just left and my son with me. I got a bit tearful in clinic but I can do this so many on here have to put up with more I need to stop worrying and women up! X
Hi Jayne I think it is all such a shock. My shock yesterday was that I’m not HER2 positive as pathologist revised it to negative, so now have to wait to see about oncotype type test. I was quite resigned to having chemotherapy as if there were any stray cells then it would kill them off and because I was told it was HER2 positive I had no choice. I think if the oncotype score came back borderline and they gave me a choice I would find it difficult to decide whether to have it or not.
Its still such a shock though, sending you a really big hug.
Hi Jayne. I am having chemo before surgery. Im sorry to hear your score is so high. Have you experienced the cold cap then to know it is uncomfortable? X
No it haven't experienced it just what friends have said . So I shouldn't really comment. I just not convinced they work but again they do for some people . Having chemotherapy before surgery seems to be the new options now and I think it's the way things will go for many people now . But again just my opinion X you ok with all this?
I started chemo 5 weeks ago and have so far had two sessions of EC, both with cold cap. So far I still have most of my hair. To me it is definitely thinner but anyone more than a few feet away wouldn’t notice. But I know the cold cap is more effective for some people than others, and I have a wig ready just in case.
For the first few minutes it is very uncomfortable as it’s so icy cold, but after about 10 minutes you start getting used to it and soon it becomes absolutely fine (in my experience). The challenge is just holding out for those first ten minutes! The downside is you need the cold cap on about 30 minutes in advance of chemo, and it has to stay on for a while afterwards, so you spend longer at the hospital. At my pre-chemo information session the nurse gave me some leaflets with advice which were helpful. But hopefully some other folk who have been using the cold cap for longer will reply to you with their own experiences. Best of luck with your first chemo session!
Hi Jomor, this is interesting maybe I should try it then . My daughter thinks I should it would make me feel better to keep some of my hair although I know hair loss is a small price to pay if the chemo works
the good thing is you can decide to try it, but you’re not committed. So if after 10 minutes you decide you can’t stand it, you can ask the nurse to remove it - you won’t be the first! Or if after the first session you decide it’s not worth the bother, you can stop using it. Best wishes for whatever you decide is right for you x
