Sprout so interested to hear your story, hopefully this time you will be rid of it for good. I really hope so you’ve been through so much.
I had cervical cancer and a radical hysterectomy when I was 29 and last year at age 63 a double mastectomy after screening found grade 3 cancer in both breasts. I was told that as a larger lady ( size 20/22) having a mastectomy and reconstruction at the same time was too dangerous and so it was recommended that I separate the 2 operations. Having lived 1 year without my boobs with some rather horrid puckered scars I am still seriously considering a reconstruction but with my own tissue /stomach, however I need to lose serious weight to do so and am struggling especially as I have lympodema in my legs from my first cancer.
I have heard good and bad on reconstruction and so its a difficult decision.
With regards to my hair and the cold cap, these were present at the NHS hospital and you should be offered it as part of the plan for your treatment please ask if not automatically offered. I had to make sure in advance of every appointment they had it logged on the appointment as it takes 30 mins to get ready before you put it on. When I spoke to Daniel Field he told me that some NHS hospitals discourage the cap as there are shortages but not to be put off but to make sure they were there for me I’m afraid we need to take control and be firm with the staff. some times I had to wait as they had forgotten to get ready but given the results on my hair I am glad I did.
Keep mobile after your op and you’ll be up and about in no time
Lots of love Pearly
Oh I hear you I truly do. I was 46 when I had breast cancer and a couple of month later I had my Ovaries removed. Life can be crap and you think why me. I believe everything happens for a reason but you don’t understand why.
Because my implant failed on the cancer side I had to wait until my breast had healed. I didn’t want reconstructive surgery to start off with but I went on the list and knew I could change my mind. I thought Iv always had big boobs, I went to bed one night then woke up with them. I’m sure it wasn’t but from 12 they were noticeable and life without them was not for me. I love my tops and stuff but now I regret having them done. My right breast opened up and oozed nasty stuff out I had an infection that put me in hospital for 5 days on v strong IV drips. I now have lots of oily cyst in that breast and it’s so uncomfortable.
I had my stomach used for my boobs and it was nice to have a flat stomach but while at Sailsbury I was taken back to surgery a week later as my stomach scar was getting infected due to them using plasters. I became allergic to them after the first cancer.
Surgery is around 10hrs long so I understand why they say lose weight but I have lymphedema in my right arm from the second cancer so I know your weight fluctuates with the fluid. My cancer is in an area where I can’t use my machine so I use my sleeve at the moment.
Everyone’s surgery is different and most are straight forward but unfortunately mine wasn’t. 2014 they didn’t have much stuff about for mastectomies bra wise but now you have more options. If anything I wish I had gone flat then had the silicone where they add volume at a time. Not sure if they still do that but now I’m happy to go flat and just put a bra with softies inside when going out. My health is more important than boobs.
I was 4.5 yrs clear when I got my second cancer so I was taken off tamoxifen and placed on anastrozole now I’m 5yrs and have it again. I’m waiting for my HER2 test to come back as it was inconclusive. But my surgery is booked for a couple of weeks time.
Iv had an issue knowing something wasn’t right for 2yrs but they said I was fine and were ready to discharge me last month then I got a rash over both breast overnight and went to see my consultant who in the past raised his eyebrows at me as if not you again. This last time he had attitude towards me like what do you want me to do send you for a scan attitude, so Iv told my consultant I will not have anything to do with him now. Once Iv had my op I will be reporting him and getting my records. I’m strong but if I had just gone home I would be no wiser this time it was a grade 3. I will never be fobbed off again it’s my body and I know when it’s not right.
If you want the surgery then ask the doctor for help, are you on the waiting list. I was told 42 weeks, 2yrs later I got my surgery.
I live on an island south of England and had to go via ferry to the mainland this time it’s all at my hospital.
Thank you for sharing your story, this time my gold is to make people aware of what Iv gone through so people speak out and are not afraid to tell their consultant if they feel something.
Can I ask how you managed after did you wear bras or not
I wish you well
Alison
Hi
I stayed in hospital 2 nights after my surgery they wanted to send me home 24 hours later but the sister said no, thank god !
I left hospital after 48 hours with 2 drains in. The district nurse came in day 3 but saw my husband was capable and taught him to change them daily. They were in for about 8 days after surgery and removed by nurse.
I found I slept well with a V pillow in bed, it kept me on my back and stopped me rolling over and so I got to sleep ok. I use a spare pillow now to cuddle as I now sleep on my side
I also wore little vest tops that allowed me to take my arms out and step in and out of.
There was some great vest top PJs in Matalan last year
I still wear little under vests today when I don’t want to wear bras and the prothesis.
I have a mixture of soft bras you know the type bralett style which are stretchy and no cups but you get a soft form and can take them out and add prothesis
I often wear soft bras and use Marks and Spencers soft foam prothesis they are great only £10 each and even have a nipple shape. Great for swimming too.
I have some ugly puckering type scars which are tender and numb in places too. The adverts you see on TV for those pretty straight scars are not my experience but my consultant has always said he will tidy them up. However as I said earlier I am trying to decide what to do as I should not have any tidy up operation if I am going to have reconstruction - that’s my dilemma.
Will be thinking of you any other questions let me know xxx
Hi Pearly,
Thank you for your post, I have just read it after today receiving my chemo plan following a bilateral mysectomy. My biggest worry and I know it’s silly is the losing of my hair. It was such a boost to read your post and see your lovely photo, you look amazing …. Thank you x
Tp1
Really hope it goes well, please please contact Daniel Field for advice it’s free no obligation. It helped me so much not to see a sick looking lady looking back at me in the mirror and to have everyone treat me as normal because they expected me to look sick and I didn’t.
Yes the cold cap adds time to the chemo process but it’s been so worth it take a good book, packed lunch or your iPad and dig in
Good luck let me know how your doing 
You look really lovely!!! 
For balance, it’s worth mentioning that lots of us are cold capping without Daniel Field, and having good results. I did a consultation with Daniel’s team before I started chemo (I didn’t speak to him direct but someone who worked for him). She seemed nice but the shampoos are expensive and none of what they say their products do has been tested/peer reviewed by scientists, unlike the cold capping machine itself.
I was in The Christie yesterday and one of the chemo nurses had just come back from a cold capping conference w Claire Paxman (who makes the machines). He came over and asked if I’d bought the shampoos. Someone at his conference had directly asked about Daniel Field and she was v wary about some of the claims.
I don’t have strong opinion on this, and if it works then that’s amazing. 
But felt it was important to share another view as it’s fresh in my mind from yesterday afternoon. Xxxx
I’m now 8/12 weekly Paclitaxel using cold cap.
See my post above re shampoo etc and links to other charities that can help as well as Paxman website.
I have shed a little and still have a full head of hair. Without cold cap it would have been gone.
I looked into Daniel Field and it’s on par with Percy and Reed products but I’ve either purchased at discounted prices on QVC or their own website, which Daniel doesn’t seem to offer.
Jasmin from www.cancerhaircare.co.uk worked for Trevor Sorbie and she recommends affordable Faith In Nature £6.69 for 400ml which I have also used. So definitely more pocket friendly.
Thank you.
You are right about shampoos, I didn’t use the Daniel Field Shampoo. I used Dove daily light moisture shampoo and tried not to wash my hair too often.
I used the Daniel Field products for the cold cap process and the active daily hair /eyebrow/eyelash serums everyday between chemo treatments. I think these helped me but as you say everyone is different, I can only repeat what the chemo nurses said to me about the amount of hair I kept and that they had not seen so much retained even on the cold cap.
so pleased you were able to keep so much too
good health to you
Hi - I have been offered docetaxel and cyclophosphamide four sessions every three weeks or Paclitaxel every week for 12 weeks.
I have real concerns about the Docetaxel hair loss and possible long term incomplete hair growth / aloplecia
I have been told I can try the cool cap with either of the them, the 4 sessions or the 12 session.
Probably a lot will be to the actual dosage of Docetaxel but does anyone have any information on this and their hair loss I am aware every persons cancer is different but would be helpful
Thank you
Hi @etienne and welcome to the forum.
I can only speak from personal experience, I cold capped for 12 weekly Paclitaxel and lost two small patches bone my ears and shed all over. I had a lot of hair that I had cut into a pixie as I was told even with the cold cap I could still loose my hair. Another lady in the cancer unit was having the same regime and lost 50% of her hair with a cold cap.
Paxman have lots of information on [cold Cal website](https://www.cold cap.com), there is also a charity called Cancer Hair Care run by Jasmin who worked with Trevor Dorbie also offer lists of advice with caring for your hair whether cold capping or not.
This is a very useful thread to read
You can also search ‘cold cap’ in the forum and see what comes up.
As you say we are all different and tolerate the treatment differently, not to mention all our hair is different, so it’s hard to say what will happen.
Cold capping can be challenging especially for the first 10/15minutes, I tried paracetamol but realised that distraction worked better for me ( reading a book or watching something on my device). Making sure the cap is used correctly is also important ( see link above).
I wish you the best in your treatment.
I had 12 weeks of Paclitaxel /Carboplatin and then 4 cycles of EC. The cold cap has definitely helped me keep my hair, however, I did lose 90% of it over the course of the treatment. The good thing was that I was losing it slowly, so I was never bold, because by the time some of my hair had fallen out, some of it has already regrown. I’ve lost quite a bit of hair after I finished EC, but some of my friends haven’t even noticed that I had chemo!
I would definitely recommend cold capping.
I did cut my hair shorter than usual and it was a good thing. I had a longer bob which I could tie with a crunchy. I’ve got fine hair and even with much shorter hair I had issues combing it, as the ends kept getting matted. No need having a pixie cut though, my bob length was manageable and it was nice to be able to put my hair in a short ponytail and keep it away from my face. I tried not to wash it more than twice a week.
Thank you that’s really helpful - I will have a further read into all of this 
Thank you for responding.
Yes I think I know it is inevitable I will loose my hair.
My hair is very long way past my shoulder blades and always has been it’s part of my identity and who I am so I am finding it difficult so I am unsure whether to cut it before treatment or start treatment and if becomes too thin will have to cut it 
I was like you, had always had very long blond hair. For me getting a longer bob was a good compromise - luckily quite a few of my favourite celebrities were going through their bob phase which made it easier for me.
tinatin 
thankyou it’s a thought that it may be the way to go in the first instance to shoulder length
Hi
Had my first cycle of docetaxel on the 10th of December. Had quite a few side effects quite a few days later. Now 2 weeks on and ny hair is starting to come out.ive started using the cold cap not sure if it will work with the amouht of hair i have already lost.will keep using it but I think i will lose all my hair of this cycle is anything to go on.
Other side effects aching bones muscles etc.also got bad indigestion and cant taste much.mouth is sore.these side effects are quite bad so beware!
Hi @mich54
Please visit Paxman’s Cold Cap website or Cancer Hair Care for advice on how to deal with hair loss during chemo.
Paxman suggest keep going with the cold cap if you can protecting any bare patches with gauze or surgical cap as new hair growth is faster and better.
There is a monthly chemo starters group to share your journey with other having chemo at the same time. I found it really helpful. Here is the link for December 2024 if you would like to join
Take care
Hi,
I used the cold cap as I read a few studies which suggest it reduced the risk of permanent alopecia which docataxel can cause. Following 6 cycles of ECT I have little body hair but 18 month following chemotherapy a full head of hair. Apparently the cold cap protects the hair follicle. I did have hair thinning and a couple of bald patches by the end of chemo but I feel cold capping was successful as I avoided permanent alopecia.
Hi Mich54
Well done for going with the Cold Cap. I went that way and was glad with it being winter time. I did loose 50 % of my hair, but it grew back much stronger and curly. Not bad for someone who’s hair wouldn’t stay in a perm being too strong.
My taste altered and it will come back. I knew what food i likes so just persevered eating the same if it was good for me, although on chemo days i had a ready meal with some veggies ready for a quick meal before retiring to bed. I jus t wanted to sleep. Sorry but aching limbs is part of the package. But a bath before bed can help, or even if really bad one paracetamol every 3 hours. This method manages the pain better, i was advised by a nurse.
It helps to take nibbles with you, although the nurses got quite envious of some of my treats, and once i’d rung the bell a gave them a box of them.
i’ m going into 3 years the other side, but feel free to come back with any more questions. you will get through this . keep positive - love and hugs Moonsox
I start mine in January this feed has been so helpful for me in this journey