Hi Emma,
Yep, I used the cold cap. Haha! I just read my last comment and I called it the cool cap! A bit of a slip there. You definitely don’t look cool in it!
My wig is a bit darker and longer than my normal hair, but my boyfriend said he loved it on me. After all this I might have to change my hair colour! Have you managed to find a wig yet?
Hope you have fun on the beach today!
Amy x x x
Hi everyone, i’m slightly older at 32. I went to the docs before xmas with my lump. The doctor assured me it was nothing, based on her experience and she was so dismissive i didn’t go back again till April. I think my age was probably something to do with her diagnosis. Saw a different doc who also thought it was nothing but referred me straight away. Got the diagnosis on 28 April. Invasive lobular. I has a lumpectomy and sentinel node biopsy on the 18th May. They managed to get the lump with good margins but found it has spread to my lymph nodes. That was unexpected as both the ultra sound and mri indicated it hadn’t spread. Going back in on the 18th to have the rest removed and then it looks like chemo, then radio. Not looking ofrward to hair loss and read a little bit about the cold cap. Is it as uncomfortable as made out?
Hi Vic!
It’s different for everyone, but I didn’t mind it. I’ve only had one session with it, but beause I had difficulties (small veins) when having chemo, I had 7 cold caps on…haha! My mum even took a picture of me in it! I think it looks a bit like a riding hat. I hope I’m okay with it in my next session!
Hope you’re doing okay with everything!
Amy x x x
Hiya, haven’t been on this post for a while! Had 5th round of FEC last Tuesday and other than struggling with the heat, am doing ok. One more to go then rads, then hols.
Can’t wait to get my boobs sorted out too, they are both so mishapen and really ugly, I have a crease in one of them - lol.
I decided against trying the cold cap for those going through that stage now…I had lots of long hair but thought it would be enough going through chemo let alone sitting there with that thing on…but that’s just me! I started losing handfuls of hair just before my 2nd chemo, then just shaved it off as it was everywhere and I looked really ill.
Hugs for all those going through surgery, rads and chemo and hello to newbies.
Paulaxx
Hi girls,
Hope you are all doing OK… and welcome to those new ones… you are certainly welcome to join in even though you are slightly older!
Just had my 3rd FEC last Wed and still having a hang over. It’s not as bad as the 2nd one and I think my onc has finally got the balance right on the dose of the anti-sickness tablets.
Just gone pass my 1st anniversary since dx and have had lots of mix feeling, but so glad I’m still here.
I’m getting used to cold cap now. Still caught in 2 minds about whether to continue or not because my head is going patchy! Really don’t like wearing a wig on a hot day, so still wearing my hat just to cover up the bald bits.
xx
cold cap didn’t hurt me at all, though having it on irritated me, then not being able to wash my hair much and it looking rubbish peed me off, then bits started coming out, so i thought enough us enough and my friend shaved my head for me. Am glad i did, even if people keep telling me i look like my brother!
Thanks for the posts on the cold cap. I’m def going to look into it. I hadn’t even given a thought to how uncomfortable a wig might be. But at the same time I don’t feel its the end of the world if i do lose my hair, I will do what it takes to get better. Not sure what my little ones will think though! They will probably laugh at mummy!
I’m doing ok with everything, just taking it one step at a time. I do have some OMG, what if… moments but theres no point in worrying about things that may or may not happen. And these forums let me know i’m not alone. X
Hi I’m 22 and was diagnosed with breast cancer about a month ago i have had a mastectomy last week and I’ve got my results on Thursday which I’m a bit nervous about x
hi chippi87,
sorry to hear your news. the waiting bits are always the worst. once you know your results and you no your road to recovery you will feel slightly better, its the contant fear of the unknown i hate. let me no how you get on and if its similar dignosis to me im happy to talk if you want to no any more information.
good luck
xx
Hi Guys,
Sorry, I havent been on forum for a while as I have been struggling mentally lately. I am a lot further down the road than a lot of you and I did not need to have chemo so feel I should not be moaning about how I am feeling considering what you guys are going through. I have just recently gone back to work and although they are really supportive I am not coping with working alongside some of my colleagues, I’m either smothered by them or ignored completely which is hard to deal with. I am not getting much sleep at all due to side effects of the Zoladex injections so am exhausted all the time and have developed lympodeoma in my breast which is solid, swollen and sore. I got my follow up apt for the surgeon in for the middle of July but it is not even with the surgeon that operated on me so that is disappointing and not sure I can do anything about that. I feel that all the hard work should be over after the surgery and radiotherapy but I now realise that may have been the easy bit!! Oh and my sister is getting married at the end of July and I need to find the energy to organise her hen do and also the courage to try on the dress that was ordered for me, really scared it wont fit due to the lymphodeoma and weight put on due to injections! Also going through the fertility clinic issues due to them shutting down my ovaries for potentially 5 years but they seem to think I have nothing to worry about and I should still be able to have kids in 6 years time without them having to freeze eggs but not sure I want to take that risk. We shouldnt have to deal with these issues at our age.
Hope all you guys going through chemo are feeling ok. Those waiting for surgery or results I am thinking of you.
Ali xx
hi ali,
sorry you are feeling so crappy, i bet your sisters wedding is putting a big stress on you. My sister got married 8 weeks after i had my fisrt son and i was feeling shitty ( yes i know, how stupid could i have been wasting time feeling crap then when i didnt know how bloody lucky i was!) but felt really poe-faced when they were all having the time of their life and i was feeling lost and fat and having to organise the hen do, and felt like i should be enjoying it and wasn’t. But you have been through a really horrific time and should go easy on yourself. There is another thread about an article for what next when your treatment is finished and it is really really good, shows you how you have to have time to recover, not just think you will be wham bam back to “normal”, maybe you could have a look at that?
hope you feel a bi better soon,
Vickie
My goodness, Ali, that’s a lot to deal with, no wonder you are struggling! So right we shouldn’t have to deal with these at our age. Even after the main treatment has finished, it still take a long time to get back to where we were, if ever. There’s a lot truth in that we’ll never really be the persons we were… and yet, we try to live an as normal life as poss and try to ignore the lingering thoughts / fears / complications about what this horrific and life-changing experience might mean for us. Send you a big hug and hope you feel better soon.
chippi, welcome to the thread, sorry you’re going through this at such a young age. Hope you got on OK with your results.
I’m going to have 4th FEC next wed and then have my midway scan to check how effective it has been. Both onc and I can tell it’s been doing a very good job from the tumour markers, just need the more reliable CT scan to make sure.
Everyone else, hope you are doing OK.
xx
glad your chemo seems to be working well
xxx
Hi to everyone,
I’ve just been reading this thread. I was diagnosed with bc when I was 24. I’ve been on Zoladex and Arimidex for 3 years now and am seriously considering coming off them-I am fed up!
Hot flushes every hour, neck and shoulder pains, poor skin, night sweats so bad I have to sleep with a fan on, and of course the horrible ‘dryness’. And to add insult to injury these side effects were one of the reasons my boyfriend of 3 years left me.
So I am left wondering whether all this is really worth it as my quality of life is severely suffering. Am I mad to stop my hormone treatment?
On a more positive note for us younger ladies, I am currently designing a range of affordable, feminine and most importantly fashionable swimwear and underwear for post breast surgery women. I am fed up with feeling ‘frumpy’ lying on the beach!
Laura
Was 34yo when diagnosed at the end of April with IDC grade 3 triple neg (not so young but too young to have BC).
I have 2 young kids and was on maternity leave when I found the lump.
I have had 3 FEC, will have a 4th one in 2 weeks and then 4xTaxotere. So far so good, I coping well with the treatment and I’m back at work full time so it is possible to work through chemo…
I just wanted to tell all those of you who have not had any children and have not started their chemo that there is a new drug called Zoladex (avail on NHS) which put your ovaries to sleep during treatment.
When my onc asked me if I wanted more kids I said I didn’t know so I chose to have this injection. It’s once a month and has no side effects…so worth trying.
Like many of you no family history of cancer so was considering having my DNA tested to find out if I am a gene carrier…anyone had the same idea?
Good luck to all in your treatment.
Hi Guys,
How are you all doing?
tors thanks for the tip on the article after treatment, it was really good.
Welcome Laura18, sorry to hear about all your side effects that you have had to endure for 3 years I am feeling your pain although have only been experiencing them since February. I dont blame you for considering giving up the hormone treatment, its a difficult balance between taking the meds to reducing the risk of possible recurrence and having quality of life by not taking meds to relieve side effects, especially when the statistics are so thin on the ground for us young people due to few of us being diagnosed etc therefore not enough studies having been able to be carried out. They really have no idea our likelyhood of recurrence. But what an amazing woman you are designing fashionable swimwear for us breast buddies. Keep us up to date on your progress with this project.
fighter34 welcome to this thread and I am so glad you have no side effects from the zoladex and that you are managing to go back to work even whilst going through the chemo. I on the other hand have been put on the zoladex and have got mood swings and major menopausal symptoms, loss of interest in sex as side effects which they cant seem to control at all so very little sleep etc and on a whole host of other meds to try to enable me to combat these side effects which suprisingly enough give me even more side effects (dry mouth, dry skin, restless) …where does it end!! LOL. I was told that although it is hopeful that my ovaries will return to normal funtion in 5 years when I come off the zoladex this is by no means a guarantee but my oncologist does not want me to get eggs frozen as this procedure increases the oestrogen albeit temporarily so I am stuck in a really difficult position of not knowing if i’ll ever be able to have kids naturally. i have no family history and have had an appointment with a genetics nurse who said that they would only test my DNA if I had a daughter and she developed BC but that they could take a sample of blood from me just now and store it until such times as it was needed so it’ll be interesting if you are allowed to get tested for the carrier gene just now.
Take Care everyone Ali x
Hi girls,
All those SE about zoladex sounds a bit scary!!! Zoladex and Arimidex is the combination I’ll be having after chemo’s finished and it certainly doesn’t sound very nice. But hey, I’m guessing it might be easier than chemo??? I had Tamoxifen, didn’t experience much SE at all and it didn’t work for me. Just wondering Laura, have you had Tamoxifen? From what my onc has said, Zoladex and Arimidex will certainly have a much worse SE compare to Tamoxifen. I’m so sorry about what’s happened with your boyfriend, but so proud of you for designing swimwear and underwear. Shame I can’t swim, but would certainly be interested in the underwear!
Ali, it’s such a tough decision to make when you really want to have kids. And then you worry about if a daughter, whether she might go through what you’ve been through. Why can’t they test your genes now to help you to make that decision? What’s the point of testing it when she had developed BC? Wouldn’t it be too late then !!??? Doesn’t make sense to me at all!
Fighter, (great name by the way! We all need that fighting spirit!) Because my BC is very hormonal (100% ER+ and PR+), zoladex is considered as a hormonal treatment, my onc wouldn’t give it at the same time with chemo - they’ll interfere! Thanks goodness I have no prob with not having kids!
xx
Good evening everyone,
Sorry I completely missed some of the chats on Zoladex…
Ali, I said I have no side-effects but I do not have much interest in sex too and I get hot flushes…but I guess having 2 young kids under 3 means that I’m so tired in the eve that I don’t really want sex and have no problem sleeping!
Re gene testing, I have 2 daughters so I would definetely get tested once my treatment ends.
One a more positive note, one of my friends was dx at 25 with BC, she got pregnant 3 years after her treatment…then she had a second BC in the other breast and also felt pregnant a second time after treatment…there is hope out there.
For hot flushes, I’ve tried acupuncture, also helps with sleeping and with stress.
For those of you in London, Hereford and Leeds, I’ve had a lot of support from Breast Cancer Heaven (check: breastcancerhaven.org.uk/), they deal with the emotional support needed for BC and offer lots of complementary therapies to help with side effects of treatments.
Good luck to all and stay positive.
bumping up
Hi everyone
I was diagnosed last Feb aged 25. Had left mx followed by chemo and rads. Then diagnosed with BRCA 2 gene so 6 weeks ago had rght mx followed by double expandable recon…what a year!! I came off zoladex a just used it through chemo. No on tamoxifen but have ade decision to stop that at the end of this year. Although they say it reduces the risk ofit returning i feel that by having double mx i have reduced the risks greatly plus i hate the side effects!!
xx