First post...diagnosed three weeks ago

I am terrified. I start chemotherapy jan 10th and will be having a mastectomy around June. I am her2 positive Estrogen negative. My head reels with questions I have no answers to…reading peoples posts has helped . What are people’s thoughts on scalp cooling… does it work?

Hi Rachel,

I did the cold capping (lovely during the really hot weather) and during 20 weeks of chemo kept about 80% of my hair. Unfortunately, since I finished in October and stared taking Letrozole it’s been falling out loads and I probably lost 50% of what I had left which is annoying. Apparently the capping also helps what hair you lose grow back quicker after you’ve finished but that’s not been the case for me, it’s all going one way and nothing is coming back. Having said that I’ve seen great results on other people. One girl at my clinic has had to have chemo twice in the last year or so and still had longer, thicker hair than Ive ever had. It’s definitely worth trying. I put my loss now down to the letrozole, not the chemo.

Just to put your mind at ease I found chemo pretty easy with minimal side effects to the point that I worked through it. The mastectomy was also an easy operation (I had no reconstruction ) with a quick easy recovery. The thought of treatment is probably worse than the actuality.

Good luck with it.

Thank you

Hi Rachel. My sister and I have both had breast cancer. My sister had it 12 years ago. She had chemo and used the cold cap. She kept quite a lot of hair but it was very patchy. When her chemo finished it quickly grew back and she still has nice thick hair. I know someone else whose hair grew back thick and curly (was straight before!). I had breast cancer in 2016, had mastectomy no recon, didn’t need chemo and am now on anastrazole for 10 years. We both recovered quickly from mastectomy. I haven’t suffered any hair loss on the anastrazole although I do get achey joints. You are at the beginning of your journey which is the worst bit - all the shock and massive anxiety and not knowing. It will get better when you get your treatment plan sorted. Lots of support here! Debbie xx

Thank you x

Hi Rachel 

I used a cold cap in 2011 when I had 3 rounds of FEC and 3 of Docetaxel. I found it worked well during the first three cycles and I maintained about 80% of hair and could cover any bare spots with hair band etc. It came out more on the last 3 cycles but I saw it through to the end and was glad that I did. I went for a haircut or two along the way to tidy it up. Incidentally I had long hair before chemotherapy and had it cut in a short bob before I started to prevent losing so much more with the brushing long hair needs. I have just been diagnosed with recurrent breast cancer and had first dose of Docetaxel today and I’ve opted for the cold cap again. The first 30 minutes are the worst bit but I found that once that had passed I didn’t really notice it that much. Take a blanket to keep warm though!  I am HER2 positive and oestrogen negative too this time which is a reversal of my first occurrence. Good luck. I am finding the Herceptin and Docetaxel pretty good and have not suffered at all. Take care.