Chemotherapy and scalp cooling – to cap or not to cap: that is the question

My first chemotherapy cycle is due to start in a few weeks’ time and I still can’t decide whether to try the cold cap to try and prevent losing my hair.  The prospect of any woman losing her hair is certainly very frightening – another giant signpost of this dastardly disease.

I have been in touch with some lovely ladies who have tried the cap and it has been successful for them and with those who decided not to.

I had reservations before I met my oncologist as to the safety of using a cold cap as I’d heard that by using it the scalp wouldn’t be protected if the cancer cells were to spread to this area (metastasis). Metastatic breast cancer is cancer that has spread from the breast to another part of the body or has come back in another distant location.

I raised my concerns with my oncologist and he said they simply wouldn’t recommend using the cold cap if it would cause the patient any harm.  He handed me some printed information from Macmillan on scalp cooling to read. In it there is a section titled “Concerns about scalp cooling” where it says:

“Some doctors worry about using scalp cooling with treatment that aims to cure the cancer. They are concerned that cancer cells that may have spread to the scalp may be more likely to survive chemotherapy if scalp cooling is used. However, cancer spreading to the scalp is very uncommon. Clinical trials have shown that the risk of this occurring as a result of scalp cooling is very small, except in haematological cancers. Some people may prefer not to have scalp cooling because of this, but others are happy to try it.”

He put me down to try it. Whilst chatting to my breast care nurse I also voiced my concerns again, and she echoed the same sentiment of my oncologist, they wouldn’t recommend or use it if it were to put the patient at risk.

I’d also been in touch with another lady who is currently undergoing chemotherapy and who has successfully used the cold cap. Now on her fourth cycle of treatment she has kept her hair and is pleased with the result.

I really don’t want to lose my hair. I think that’s a given for any women diagnosed with cancer. I have shoulder length hair and if I have more than an inch cut off at the hairdressers I feel like I’ve been scalped. I hate to wear my hair up, I feel exposed, and it’s nice to “hide” behind if that makes sense. However for the sake of keeping my hair, that will ultimately grow back, do I take this very minuscule risk?! Of course, the cold cap doesn’t work for everyone, so I may end up losing my hair anyway.

I decided to call the breast cancer care helpline (0808 800 6000) to ask what their thoughts were. The lady explained that evidence suggests that it is safe for people with breast cancer to use and that the risk is only for people who have a haematological cancer such as leukaemia. She also pointed me to an article that ASCO (the American Society of Clinical Oncology) had recently published in which she said that this risk was understood to be the case 30 years ago, however they understand the biology of cancer far better today.

The article reads: “We understand a lot more about the biology of cancer and metastatic disease now; it turns out that the risk of metastases to the scalp is extremely low, and as a first event for advanced disease, it is even lower. Mostly, scalp metatases are seen after people have already had metastases to other places in the body, and in total, only about 1.2% of all metastases are found in the scalp.

Scalp metastasis would have to be the first site of metastatic disease to postulate that is has anything to do with scalp cooling, and that is very uncommon in the studies that are available. I’ve reviewed over 4,000 patients reported in clinical trials, and it is just exceedingly rare and doesn’t seem to be any higher in risk, from what we can tell, in patients who are using the cold cap.”

The lady on the helpline said it really was down to personal choice. I need to do what is best for me, what sits most comfortably in my mind and will give me the least amount of worry.

More choices, and more difficult decisions. I’m a natural born worrier and not the most of decisive of people let’s say! I have a few more weeks yet to decide. I’m just wondering if anyone else has been in this quandary and what helped you to decide?

7 thoughts on “Chemotherapy and scalp cooling – to cap or not to cap: that is the question

  1. I too was given the option to go the cold cap but chose not to. The reasons for me were 1. I had really crappy hair anyway and number 2. the cold cap was prone to bring on migraines for migraine sufferers. As I haven’t suffered a migraine for a few years, I wasn’t keen on starting them again so I just went without. I have noticed quite a few people in my chemo ward using the cold cap and they have a full head of hair. I haven’t spoken to them (yet) to see how far along they are but by looking at them, their hair looks full and lush.
    I wasn’t afraid of losing my hair so it really wasn’t a big deal for me and it is a personal choice for most. If you want to give it a go, why not? If you dont like it, if it is uncomfortable or if you find it doesn’t work, you can just stop.
    For me, I have less to wash in the shower and not just my head (will leave out the details but let me tell you, smoooooooth all over) except that one patch on the back to the left of my head. One little patch is enjoying growth hehe.
    Good Luck on deciding 🙂

    Liked by 1 person

    1. I really admire your ability to not worry about losing your hair Amanda and can totally see how the pain of migraines are not welcome on top.
      Thanks for the heads up on less soap 😉
      I think I’ve decided that I’d rather not take any extra risks and save myself worrying about what if’s and just let it do its thing all over. I have a wig appt next week – did you wear one? Xx

      Like

  2. Brilliant and thought provoking post Allie. Being comfortable with your own decisions is key but we all know that actually getting to a decision is almost the hardest part. Trust yourself x

    Liked by 1 person

  3. You already know how I feel about this one but it is ultimately your decision. For me it was mostly about looking back and regretting a decision. No matter what, chemo will travel through your entire body and there are risks associated with it, and for me losing my hair wasn’t a big deal. But I understand this is a big deal for others. I wanted to let chemo do its thing and if I still develop a met then I would say to myself, “I did all I could.”

    I wish you good luck deciding. I am staying positive for you no matter what route you decide to take. You’ll do great!

    Liked by 1 person

  4. Hi Allie
    I’m sure you’ve made a decision by now. I just wanted to say that I had the cold cap – it was tough and I did have a few headaches afterwards. I kept my hair. All of the decisions along the way seem to have risks associated with them – be satisfied you made the right decision for you and try not to look back.
    Good luck for chemo – Dee

    Liked by 1 person

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