Cold capping

Hi Lisa

Thanks for reply.  It has really helped. Staff did struggle with cap and I decided to play with it myself and tighten chin strap as I didn’t feel it connected as well as it should.  Hopefully I can do better next treatment.  I know I will lose but would like to prolong as much as possible. 

What breast diagnosis did you have and how are you doing after chemotherapy.  Do you have any more treatments left. 

Thanks for listening. xx

I also tried to tighten the cap myself as some of the nurses weren't really educated with the procedure and nearly had a meltdown on the 3rd EC as the nurse hadn't even switched the machine on! I had sleepless nights thinking that I was going to loose my hair. I'm not a very outspoken person but was on this occasion! Luckily one of the other nurses came to my rescue but it does depend on each one. I can remember on my 1st time there was a lady who's cancer had returned and whilst having a conversation with another lady pointed and said she'd tried that (Cold cap)   and it doesn't work needless to say the next few times I saw her I walked past flicking my hair 

Lobular carcinoma with lymph node involvement ER8, PR7 HER-2 negative (Had to look at my letters)! I had a single mastectomy on 5th July with immediate implant, due to have 15 sessions of radiotherapy  in 2/3 weeks (Appointment for scan & tattoo on 6th Sep) then I'm having 6 or 8 sessions of oral chemo 3 weeks after the radiotherapy has finished as although the chemo had shrunk the beast lump it hadn't done anything to the cancer in the lymph nodes but I still have clear margins as 9 were removed and 6 were clear.

How about you? x  

Hi Lisa 

Thank you so much for your message.  Think I’m gonna take the reigns at my next session with the cap, they weren’t very good!  Didn’t wanna be too abrupt as it was my first one.  Found a lot of people staring but they all had a full head of hair!

Anyways.  I have ER and PR receptor positive. HER-2 negative. Has single mastectomy and all node clearance. 47mm tumour removed/. All lymph nodes so 15 removed 10 affected. 4x EC and 4x Dox chemo. Same radiotherapy 15 and then hormonal meds for next 10 years!  Offered new drug also oral alongside hormonal.  Will take whatever is on offer.

So forgive me you had single mastectomy and lymph node removal, was the tumour not removed in mastectomy? Did you have all nodes removed?  So do they check everything is clear with scan, they told me I wouldn’t have one!

Nice to meet someone with almost the same.  

xx

And  you for yours! I get so fed up with people saying oh so and so had the same and when they start to describe what they did have it's completely different!!! And yes it's always those with a full head of hair that are the most judgemental and I get that some people aren't fazed by hair lose but it was such a big thing for me.

We  are almost the same but not as many nodes were infected  but yes the tumour had shrunk with chemo and what was left was removed (Skin saving mastectomy)  but only 9 nodes in total so not as many as you had. They also told me I wouldn't have any scans like I did at the beginning (CT & bone) to see if the cancer was anywhere else. But I will have a Dexta scan before starting the hormone treatment to see if my bones are up to it? Did you have this? I'm due to see the oncologist on Monday to sign consent for the chemo tablet and hormone tablets which also mentioned another drug alongside (Can't remember the name of it) but when I looked into it it has it had little or no effect so might not go for that one.

Have you had the radiotherapy yet or is that what they told you to expect at the beginning? Did you have reconstruction at the same time (Hope you don't mind me asking) only I've been told/advised that it will harden the implant I have so have a 'reconstruction' appointment in April to discuss the options.

I guess by you're name you are only still in your 40's? (Again I hope you don't mind me asking) but I think depending what age you are makes a difference to the choices you make  xx

Hi

i Re-read your message and worked out you had chemo first.  I had mastectomy first in July. Now chemo which started yesterday.  Will definitely have  radiotherapy after chemo then hormonal tablet treatment.  I’m 52, so almost 77! Not sure why that came up!  

Anyway they offered reconstruction at same time but wanted to know I could manage chemo first as I was having it after.  I have school age children and needed to get home and knew reconstruction would be a longer recovery as they mentioned tissue from abdomen and skin from back!  I guess we just have to trust the medical profession, we have no choice. 

From ct scan at the beginning I have osteoporosis in spine so am waiting dexa scan also.

how big was your original tumor and did biopsy show nodes infected. 

Xx

Hi

I'm 53 but my children are grown up! 

The implant is probably temporary as the radiotherapy will more than likely harden it apparently! (Not sure if I've already said? This chemo brain seems to be lasting longer than I thought)! So I have an appointment in April for the final reconstruction and will probably have the one you mentioned (Fat from abdomen) and certainly a lift on the remaining one, it's getting very lonely down there on it's own! They also said that there's a shortage of plastic surgeons at the  mo and will probably have to go to a hospital in Nottingham to have it done (I'm in the Midlands) and also had my implant couriered from Bolton on the day I had my surgery due to a shortage!!!

I've also got to have a Dexta scan before starting on the hormone tablets.

My tumor was 23mm and shrunk to 9mm after chemo and yes the original biopsy did show lymph node involvement but the chemo didn't do anything there for some reason.

Anyway hope you're feeling ok after your chemo x

I am using the cold cap.  I take 2 paracetamol about an hour before my treatment.  I had my hair cut short.  I have kept more of my hair than I expected and not used my wig.  I was pleased because of the hot weather.  I have beanies for when I am out. and if I feel that I need to cover up. The oncology nurse said at my last treatment that they had been on a course and were told that the hair grows back more quickly after using the cold cap. Who knows.  I don't wear any earrings for my treatment. 

I use Faith in Nature hair products and wash my hair once a week.   I have chosen to use the scent free ones. Both shampoo and conditioning. Towel dry very carefully. Cancer Hair Care were very helpful and gave me lots of tips.

I hope this helps.