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Is it safe to use cold cap when lymph nodes were affected, another worry?

10 REPLIES 10
Community Champion

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Hi Deejay, my Health Trust  paid for my wig which I really loved. Identical to my own hair. I got a ' chitty' which I took to the preferred provider. I was allowed anything I wanted. The one I eventually chose was slightly shorter than my bob. I was recommended this as the synthetic ends can rub and split if they rest on shoulders 

I took advice on the make also. I ended up with a really lightweight wig which was very comfortable . It was hand threaded onto a light lace cap and so looked just like my scalp. Mine cost almost double than Mais but I didn't pay anything. 😊  Unfortunately every Trust is different which is a shame when our hair is so important to us.  Don't forget , no BBQ, naked flames etc with your wig! 😱 I booked onto the Look Good Feel Good course and learned how to draw my eyebrows in, and line my eyes to make up for lost eyelashes. I never lost all my eyebrows, but they were pretty thin. Too busy fighting the nasties to worry about them, although I did miss my own hair. Hats and scarves made me feel quite glamorous , though. X

Member

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Deb, 12 months ago I was in your position - about to start chemo. Although I am a very different person to the one I was 12 months ago, I've already forgotten alot of the chemo experience. At the moment, you probably think the end of treatment will never come, but it will and you will be OK again. Definitely join the monthly thread for chemo - the ladies on mine were a lifesaver to me!
Member

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Hi Deb, I had a lump just under 5cm and 3 positive lymph nodes. I had EC-T chemo and cold capped. It was important to my children that I continued to look like me, so I gave it a go. I asked my oncologist directly about the risk of cells not being zapped on my scalp because of the cold cap - was it safe? She said they wouldn't be allowed to let us use it if it wasn't and there is no proof against it. I had my long hair cut into a Bob before starting and although i lost 50+% of my hair, I was able to cover the bald patches with Alice bands etc, and was so successful at disguising them, people I saw everyday never knew I had cancer and was having chemotherapy.
Community Champion

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

DeeJay, I found the wig was slightly more luxurious than my hair. I found a nice Bob style wig with micro mesh which looks very natural as you can see your scalp through it. Mine cost about £160, it's this one: http://www.hothair.co.uk/Discovery-Wig-by-Inspired.html  

Ask your hospital if they have a wig voucher scheme for discounts. Some vouchers have to be paid for e.g. you pay £70 for a voucher to get a higher discount.  I found I preferred wearing a newsboy or military style baseball cap over mine when I went out and about, to squash it down a bit and in case it got windy I felt better holding onto the peak of my cap instead of the wig (it never blew off btw but I think you get paranoid that it will!).  I'm glad Mr Lumpy has gone so now your chemo is to tell him he's not welcome back! Best wishes. Xx

Member

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Mai7, thanks so much for taking the time to reply and it has helped a great deal, it does help to know people with a diagnosis similar to mine are over the treatment and can again live life to the full again! It really is a tough decision as I'm scared of losing my hair but even more scared of not zapping all of the little nasties! I will have a look at hothair.co at their wigs as I haven't found one yet that suits me they seem to be too much hair for my long fine straight hair with too much body that just doesn't look right, so thanks for that! I can say that I'm glad to have got rid of Mr Lumpy along with his friends in my lymph nodes although my armpit pain is causing me some jip with swelling but definately worth getting the lumpy time bomb out! Thanks again Deb xx
Member

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Annie, thanks so much, I think I need to stop going on Google as when I did and saw lymph node involvement it sought of read like I was doomed and I panicked! Well you lovely ladies have shown that in reality this is not the case at all and i have a good fighting chance of this monster being kicked to the kerb! Deb x
Community Champion

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Hi Deejay, I can share my experience with you and hope it helps a little.  I had 8 rounds of FEC-T (4FEC + 4T). I cold capped for my first FEC and still had quite a bit of hairloss from day 19 onwards. I decided the pain wasn't worth the gain for me and I also decided I wanted to get the chemo into every cell in my body as I had lymph involvement.  As it turned out, the hairloss without the cold cap continued but I never lost all of my hair even without the cold cap.  For the next 3 FECs my hair continued to reduce, I got my partner to give me a grade 2 all over and wore a wig. (A fantastic one from hothair.co.uk)  I still kept about 20-30% of my hair and as soon as I switched to Docetaxol (T) it started to grow back like peach fuzz.  I'm now about 3 months post chemo and have about an inch of hair all over and my hair colour hasn't changed at all.  My daughter said I look like "her in The Matrix film" now!  On the Docetaxol I lost my eyelashes and eyebrows so used eyeliner to frame my eye and pencilled in my eyebrows.  I recently got them microbladed but if you have time for microblading before chemo starts I'd recommend it to save time and effort on eyebrow makeup.  It's a tough decision, I know, but once you start losing your hair you don't care any more, you just get on with it. And the great thing is that it grows back and wow, how much you appreciate having hair, brows and lashes like no one else when it does!  I hope all goes well for you, and yes the anxiety monster will give you headaches, back and chest pains if you let it.  I found that early on but you will get a grip on it once your treatment is underway and you feel something is being done.  Join the "going through treatment" monthly chemo thread and chat with other ladies starting the same month as you. I found this a tremendous support. I wish you well. Xxx

Community Champion

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Deb, I didn't use the cold cap - so no use on that front! I wanted to say that BC is very treatable. A walk in the park it ain't , but it's doable . Your medical team are your front line defence. Your success is their success . Trust them, and trust yourself. You are stronger than you look, and braver than you ever imagined. My tumour was 2.3 cms, ER+, and I had 7/15 LN affected. I had surgery, chemo and 20 rads. Currently on Letrozole and Ibrance, and will be for the foreseeable future. It is what it is, and although life isn't what it was, it is good to be able to live, laugh and enjoy my family after a very long eleven months of treatment. So you get rid of Mr. Lumpy, and good luck on your journey. Sending hugs. X

Member

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Thankyou so much for your reply, and you really have no idea how much your journey with this dreaded disease has made me feel a bit more positive! As I've also had a tumour and 10 lymph nodes affected I keep finding myself in a very low place feeling of hopelessness! It's comforting to know that you have been successful with the cold cap and secondly that you have also had nodes affected and have managed to kick cancer into touch! At the moment I have tense muscle pain in my back and keep thinking the worst even though my ct scan showed clear a month ago, my husband keeps saying it's anxiety etc, it is a worry but thankyou on both counts it's made me feel that there is life at the end of this miserable tunnel! Deb xx
Member

Re: Is it safe to use cold cap when lymph nodes were affected, another worry?

Hi Deb, every oncologist gives different advice. Some don't like their patients to use the cold cap whilst others actively promote it. I guess you have to do your research and decide what you feel comfortable with.

My hair was (and still is!) just below shoulder level. In September 2014 I was diagnosed with an 8cm and a 2cm tumours plus 26 out of 27 lymph nodes positive.

My oncologist and surgeon were both happy for me to cold cap through 3xFEC and 11 x weekly paclitaxol or taxol (docetaxel is known as taxotere.

I was not told of any risks, but like you I have read other people's accounts.

I was very successful with the cold cap and wholeheartedly recommend using it if your hair is important to you. I did lose some hair, fortunately very evenly across my head (no bald patches). I did have my hair cut into a short bob to help thicken it up. By the end of chemo I had a good inch or 2 of new hair growth giving me some nice natural layers.

Sorry, this probably hasn't answered your question! Hopefully someone else will come along with a more informed answer.

I would suggest that you arm yourself with lots of questions for you next meeting with your oncologist.

I hope you find the answers that you are looking for.

Good luck xx
Member

Is it safe to use cold cap when lymph nodes were affected, another worry?

Hi lovely ladies,
I'm due to start chemo 3 x erubicin and Docetaxel then 3 x Taxotere (I've probably spelt these wrong as it's from memory)! I had a 23mm tumor and 10 out of 30 lymph nodes affected her2 negative! I'm wanting to keep my long hair desperately but I'm also scared that if I use the cold cap I might not be zapping all the nasty cells that might be floating around my head! Has anyone used the cap with similar diagnosis to mine or were you told it is risky of a recurrence? My oncologist never mentioned risks it's just what I've heard so it's just another worry in this never ending nitemare! Thanks as always Deb x