I got my results from my operation on Thursday and good news that they got it all with clear margins and clear SNB and it’s stage 1.
The tumour was grade 3 with some DCIS found ER3 HER2 3+ positive so I will have 6 x Fec-TH - with Herceptin and Tamoxifen all of this will start in approx 3 weeks.
The ONC said she would make an appointment for me for a wig fitting and she also mentioned that I could have a cold cap if I choose to so I was wandering if any of you ladies have had the cold cap, what it was like and if it was worth trying?
I had my first chemo 2.5 weeks ago and used cold cap, it uncomfortable for the first 20 mins. After that it was uncomfortable but not unbearable, feels like ice cubes forming on your head. Bear in mind using a cold cap prolong the treatment time by almost 2.5 hours. You have to have it on 30 minutes before start of treatment and have to keep it on for about 2 hours after treatment ends. My understanding is that it doesn’t work for everyone, however, the lady who was seating next to me had been using it throughout her 7 treatments and she had not lost any hair. I guess is a hit-and-miss technique.
Hi Chris had my first session 12 days ago with cold cap, so can’t really tell yet if it has helped , but its so far so good, I found it quite bearable, the worst thing for me after initial 15 mins or so of discomfort was the very tight chin strap and of course the extra time that had to be spent on the unit, that said I will definitely continue with it and keep my fingers crossed I really didn’t find it at all painfull , in fact after a while had to keep checking that the machine was still working, hope this helps. Lynda x
Hi Chris
I have had 5 out of 6 cycles of FEC and have used the cold cap from the beginning. My hair has gone thinner but I still have it which is fabulous for me. I wear a hat occassionally but have not yet needed my wig. I don’t find the cold cap too bad at all though as others have said, it does extend chemo by a few hours. For me, its definitely worth it. Good luck x
My diagnosis was exactly the same in Oct 2011. I was offered the Cold Cap but told to be prepared and get a wig just in case. Treatment was Nov - March so the combination of cold weather and several hours at a time with a semi-frozen head was a bit miserable at times, I sometimes needed a hat for the cold wind, and I often woke up fearing clumps of hair on the pillow, but it worked! I will always be very grateful that I kept my hair, even though I had the ‘silver fox’ look after a few weeks. Once treatment was done and I had my (once natural) colour back, I was Me again in time for our daughter’s wedding on 5 May. If you are prepared to spend the extra time at your Chemo appointments, and can tolerate the coldness, give it a go.
If someone had said to me 2 years ago 'this is what you’ll go through in the next 18 months … ’ I’d have said ‘I can’t do that’. But I did, one day at a time. Surgery, Chemo, Neulasta, Portacath insertion, Radiotharapy, Herceptin, Tamoxifen, scans, bloods, heart echos; some days worse than others, but the good ones far outnumbering the bad. We planned something nice for the weekend prior to each Chemo, and as the cycles progressed and I felt a bit off for a few days afterwards I tried to be kind to myself and accept that I couldn’t expect to go through this feeling 100%.
Whatever you decide about the Cold Cap it’s the treatment that’s important. x
Thank you for your comments mb, I know it doesn’t work for everyone, but hearing the positives does help a lot when your going through it , I think the worse for me was spending the extra time on the unit, but I will stick with it , it’s very early days for me at moment day 14 of first session but so far…it’s hanging in there
My wife was diagnosed with secondary breast c in March. The ladhad ad the cold cap during her initial chemo sessions and has done so through this course of treatment. She has gherkin 6th session this coming Monday and she looks absolutely great, very little hair loss. It can be tricky at the outset; remember that time when eating the ice cream the cold got at your teeth? We are all different so what works for one etc. give it a try,be positive but also do not be afraid to say “it’s not for me" I wish you every success
like others I would say definitely give the cold cap a try. My hair got a little thinner on top - the trouble is that not all the nurses are equally good at getting the device to push down on your head tightly - but basically I hung on to most of it and nobody noticed anything apart from me.
Yes, it is very cold at the start (take paracetemol - it makes a difference); wear long woolly socks and take shawls/a blanket; and the length of time you have to stay there is a pain. But I even fell asleep a couple of times while wearing it, so it can’t be that intolerable.
Go for it Mrs Ugbug. Keeping my hair, even though I shed from chemo 3 until 7 weeks post chemo, was the only thing that kept me sane. I suppose I’m vain and to me my hair is a sign of my femininity and the thought of my poor husband waking up next to a bald woman didn’t bear thinking about. I’m a private person and only told my close family about my condition, no one else. I didn’t want to look like a cancer patient or be treated like one with everyone asking me how I was and offering sympathy. Well the cold cap was my salvation. I got a wig “just in case” but always felt it looked very “wiggy” even though it was a good one. Never wore it. No one ever knew I was having surgery, chemo and radiation, and I made my self go out and look and be normal. I also used Rapidlash on my lashes and eyebrows to save those. They were fine throughout chemo but thinned just a little about 4 weeks after last chemo but my trusty Rapidlash got them back in just 2 weeks. Some people aren’t afraid of being bald, and I applaud them. However, I was afraid and the cold cap got me through it. Good luck with whatever you decide. It’s such an individual choice. B
Hi there Ugbug,
I wrote on another post so wont bore you with repeated details, but im cold capping, just had my 3rd Fec with 3 “T” to go, and still have the majority of my hair. Its harder each time as fels colder, but as said paracetemol/ibruprofen combo definately helps. Its a pain being there an extra 2.5 hours but definately worth it to keep the hair. My unit nurses are fab adn spend a good 10 mins making sure its all prepared and fitted properly.
Give it a go for sure and good luck
xx
Thank you for all the answers ladies I think I will give it a go and see how I get on with it. I’ll just have to take a bigger book with me for the extra time!!!
Hi there…I have had experience from both sides. My initial diagnosis was in 2010, treated with lumpectomy, chemo & rads - I used the Paxman cold cap, a cold fluid is pumped through tubes in the cap and keeps the temperature contantly low…I kep 90% of my hair, only losing a little around the hairline…For it to be effective it must be VERY tight over all your scalp, and I was advised to have my hair cut short (I had shoulder length hair) before starting chemo to allow the cold to reach the scalp more effectively. My over-riding memory of the cold cap is the pain, enough to make me cry… but it was important to me then to keep my hair whatever the cost.
I was diagnosed with local recurrence in January this year, and decided not to have the cold cap, I went ‘cold turkey’ as soon as I started to lose my hair in handfuls (between chemo 2 and 3) and had my hair very close cropped (number 1!). I lost all my hair for a while, and now I am 10 weeks since my ast chemo and the hair is 1/2 inch long already. I couldn’t cope with the extra trauma of the pain along with everything else this time…whatever decision you come to will be right for you…
