I have just found out my breast cancer is triple negative. The nurse on the phone has told me that I won’t be offered the cold cap as a result. I have my first oncology appointment tomorrow to ask questions. I am devastated that I won’t even be given the chance to cold cap, even though I know there are no guarantees. Is this right? Did anyone on here cold cap during their TNBC treatment???
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Hi @treacle sorry you find yourself here, but there is lots of support for you on this site!
I also have TNBC and was offered the cold cap as soon as I met the oncology team. I have cold capped all the way through (one chemo session left) 12 x Paclitaxel and now on EC. I have not heard that other trusts don’t offer cold capping for TNBC. There may be other reasons it isn’t offered, but I was not aware that the diagnosis was one of them. Perhaps others will come along with their experiences. I wish you lots of love and luck on your chemo journey 
I was offered cold cap with TNBC. It didn’t work for me, but that’s a different matter!
I have no clue why they’re not offering it- I was told from the beginning when we were waiting for my receptor results that if it was triple negative, they wouldn’t offer me the cold cap. I feel crushed that I can’t even try. I will obviously bring it up tomorrow when I meet the oncologist, but I’m not optimistic with them having said no before I even got the results. I don’t get why- I have no other medical conditions. In fact, not trying will adversely affect my mental health and my BCN knows this.
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I am TNBC. And was told it would not work with the chemo I am on =A:C. (Red devil ) Plus it puts 3 hours onto treatment and there r no guarantee’s My hair started to fall out day 15 after 2 sessions. I am devastated beyond words. I hope it all goes well 4 u x
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I don’t understand why it would impact treatment? It concerns me how communication/advice can vary. I am not triple negative but did cold cap. Some hair held on, but i pretty much lost it all. I did read that it helps with regrowth though…
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It doesn’t make sense at all that it could impact treatment.
Perhaps I have been fortunate but I have been cold capping since October and I would estimate I have lost 30% of my hair. Still shedding now, with one EC left so we’ll see….
As @sbee said, it is meant to protect hair follicles.
@treacle if you get any explanation for why your team feel it won’t work, do let us know.
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Hiya @treacle I am Triple Negative, and I was asked if I wanted to cold cap by my Oncologist, and then again by the nurse who took me through my pre-chemotherapy chat … I have made the decision not to, but I was offered … maybe it’s the different hospital trusts and how they operate, I don’t know 
… I’m sorry 
I’ve got triple negative breast cancer and I was offered cold cap. I refused it because I’ve got ME and cold makes my ME worse.
Thank you for all your replies. I also have heard it helps hair follicles for regrowth, so I don’t understand why the answer was no. I am with a very big trust that is well known for their cancer treatments, so I don’t understand why I haven’t been offered the chance. I will update tomorrow.
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I am so sorry- I am massively struggling with the idea of losing my hair. The phonecall today telling me I was TN and couldn’t have the cold cap has genuinely broken me. Losing my hair has been a genuine phobia of mine since I was little. I am not coping with it at all and my plan is to stay in the house until it grows back which I know won’t help my little girl, but I just can’t walk out of that front door. As it is long, we’re talking at least 24 months as a minimum or beyond. Having done this shielding/isolating during the pandemic before, I know I can do it which I’m not sure is helpful. My family are very worried, but I can’t face it.
Everyone said that putting something in place with wigs etc or coverings would help- I’ve been to two places and it’s made the whole phobia worse. Everyone also said that once a treatment plan was in place and I knew exactly what I was facing, that I’d feel better. I genuinely feel worse.
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Hi treacle,
I hope you get some more positive confirmation from your oncology appointment today, but just to add to the other comments, I have triple negative and was offered the cold cap. I tried it once with EC chemotherapy and found it wasn’t right for me, but it’s a personal choice that you should definitely be given.
Good luck.
Lisa x
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My mum is currently undergoing chemo for TNBC. Just to add to what others have said, she was offered cold cap and she has used it for all her treatments. She’s had 9/16 sessions so far and still has a good head of hair - I don’t think anyone would look at her and know.
So sorry for what you’re going through, I hope this forum can give you hope xx
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Hi, I had cold cap all through my treatment for TNBC (had Paclitaxel and Carboplatin followed by EC as well as immunotherapy). My hair was fine when I was on Paclitaxel but I did lose quite a lot towards the end of using EC and after it finished. I totally understand how you feel, as losing my hair was the worst part of treatment for me. The good news is that your hair grows back much better afterwards if you have cold capped (as your follicles are better protected) and I now have a full head of hair which is much thicker than I had before. Thinking of you, Treacle - and I’d defo push for the cold cap.
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They said I can’t use it because I’m having 12 weeks of chemo once a week followed by 4 doses of EC across 12 weeks. Due to my regime being once a week for the first twelve weeks, I’m not allowed to cold cap due to ‘capacity’. Apparently, nowhere in the country allows this if on once a week chemo. Is this others’ experience???
I had TNBC and I just said I wanted to cold cap. I kept my hair for the first 12 weeks but once I started EC chemo it came out fast.
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Hiya @treacle … I’m also weekly for 16-weeks, then 3-weekly for 16-weeks … I’m being honest in that I wasn’t told what was said to you … I’m with ULTH Lincoln, and I was asked by my Oncologist if I wanted to cold-cap and then asked again by the nurse who I had my pre-treatment chat with … it might be capacity, or it might be the Trust that you’re under … when I had my first treatment yesterday, there were two areas for cold-capping and neither in use so maybe it is a capacity thing at certain Trusts … I don’t know I am sorry to hear that you’re not even being offered though, it feels unfair in the circumstances
I had exactly the same -weekly Paclitaxel for 12 weeks - and cold capped every week.
Hi. I’ve done 10 of 12 weekly P&C with immunotherapy and cold capped. Im triple negative too. I was offered the cold cap & the team were very enthusiastic about it. I’ve kept all my hair so far. Not sure if EC will make it fall out. But I’m giving it my best shot-the cold cap it working well. I actually find it ok too.
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I have tnbc and brca1. I was offered the cold cap, but I refused as I don’t like the cold. It doesn’t sound right to me. Ask a different member of staff if you can have the cold cap . I also have a benign brain tumour and was still offered the cold cap.