Hi , I’m 33 with two children aged 1 & 3 and was diagnosed 19th Dec 2007 and have had sentinel node removal plus further nodes as 1 was involved. had 2 fec and 3 tax and am now on rads and am due to have a masectomy at some point. I look quite young apparantly so get talked to all the time by the older folk in the waiting rooms and they all can’t believe i’m going through this but its put all into perspective when i see the kids at The Marsden going through the same as me as if there is one thing that would be worse than having breast cancer would be for my darling children to have to go through cancer so I try and reason with myself that way but its still sucks big time. I went out in Brighton last weekend with a girlfriend and got chatted up a fair bit which was funny as i had a wig on and fake eyelashes and everything and I thought ‘if only you knew…’ but I felt quite normal i guess and i certainly looked normal clearly but what I go through on a day to day basis with all this treatment plus two very hard work children makes me feel very different from my friends but only we would know that I guess!
The waiting room thing is hard, i overhear conversations all the time and its often about tiredness and how hard it is for them and whilst i am sure it is it makes me feel like bursting into tears as i have two children and sleepless nights as my 1 yr old still wakes up a lot and its constant tantrums and noise and …need i go on??! I would LOVE to sleep for a while when i needed it but ideally I’d have loved to have not got this god awful disease until i was older and my kids were older …
Wow, I am amazed at your responses! Looks like I am not alone after all.
I got back from hospital on Friday after having the masctectomy and recon. Had a hard time of it for a few days after the op as it woud seem I don;t responde well to anaesthetic, made me very nauseous and unresponsive for a long time. After lots and lots of sleep and a couple of tons of those egg-box vomit receptacle thingies, I felt better. Got out after 7 days and feel much better than anticipated. Got my results and no rad or chemo, just tamoxifen for 5 yrs.
There is a big ugly scar under my arm and a little one in the armpit but that’s it as my wonderful surgeon at St Mary’s managed to preserve my nipple and conduct the mastectomy via an incision around the areola. I feel very swollen and like I have been sewn up to tight and there is an ugly hump on my left side so I have to wear very baggy tops. Also not loving the sports bras but overall I am good. It has all happened so fast, dx and out of hospital within 4 weeks, I only started to get to terms with the cancer and now it’s gone, all very weird.
Hope you are all well, I would love to hear your experiences post-surgery as feel a little lost now.
im 24 and was diagnosed in feb this year, had chemo and lumpectomy and now seems as though i will have to have a mastectomy. just found these forums today and was amazed that there really are other 20somethings with bc out there…
im sorry you had shuch a crap time with the anesthetic, glad your doing better now. i know what you mean about the whirlwind lost feeling, it all happens so fast you just get on and deal with it, for me its only 6months on after the chemo and 2 opperations that its really properly hit me what im going through. finding out i had another area of dcis separate to the tumor kind of pushed me over the edge i think… though am so encourgaed to read all of your stories, makes me feel not quite so alone!
if anyone has thoughts on what kind of reconstruction they had and which is the best one to go for i would find that really helpful, just starting to get to grips with all the different varrieties…
cesca x
I had a follow-up appointment with the oncologist yesterday and found out they think it would be wise to have a course of chemo as well. Thrown completely out of whack by this now as I was starting to get my head around the fact that this is over, and I think I am more terrified by the prospect of chemo than surgery.
Cesca, it sounds like your experience is the reverse of mine in terms of doing chemo before surgery. I would really love to hear what your experiences of it were as a young woman, what type of chemo you had etc, side-effects…
I had the LD Flap recon but my nipple was preserved so less skin was needed and the incision was made on my side vertically (hidden by my arm). I also have an implant. I was told this was my best option cosmetically as I am young, don’t smoke and have small breasts. I would imagine that more aggressive reconstructive surgery like TRAM or DIEP would be ruled out given your age but you will need to talk this through with your consultant. All I can say is that I am very happy with the result of my recon.
Im so sorry you have to have chemo as well, though saying that i know it gave me piece of mind knowing that the drugs go throughout my whole body. Dont be terrified, its not exactly fun and games but its not half as bad as it sounds.
I worked throughout my chemo (5months, 4xAC, 4xtaxol) and just had days off when i really needed them - usually only a couple each cycle. I wasnt sick at all though did have a bit a nausia, i think the worst thing for me was the tiredness but even that is manageable, you just have to learn your limits - bit like being 14 again and getting pissed for the first time!
i got lots of other random side effects as well that were a pain but generally pretty managable, i got neurotrophy (tingling and numbness) in both my feet (still have), had quite bad mouth ulsers (bring on the slimfast shakes) and some other aches and pains, headaches etc. oh and the steroids blured my vision.
main thing is to keep talking to your breast care nurse - no matter how silly it seems, my first cycle i must have called her every day for a week, but then you figure out whats normal and whats not.
oh! and the hair loss of course! there is always that… i didnt use a cold cap and its all gone, i shaved it when it started to go. dont be too scared, again, its not exactly what you dream about but when it actually happens its really not too bad. i think at the time i was more worried about my eyelashes and brows but these took ages to go and it was really gradual. have a couple of wigs now, selfridges and HoF on oxford st have wig boutiques with some funky styles - i highly recomend going and trying a few on before you splash out, i didnt and wish i had.
are you having zoledex (to shut your overies down) as well? i get quite bad hot flushs with that… gotta love being menopausal at 24
sorry i seem to have gone on a bit… i just know how scared i was and i wish someone had told me the above 6months ago. i had chemo first as i hav quite small boobs so they wanted to try and shrink it first.
let me know if you have any other questions about anything. thankyou for the advice RE reconstruction, am meeting my surgeon nxt week so i guess will find out more then, will let you know…
are you based in london or elsewhere?
look forward to hearing from you
cesca xx
I’m 36 (37 next Sunday) and was diagnosed yesterday. Worst birthday present ever. I don’t really know what size or grade or anything at this stage - too upset to ask all the right questions - seeing the consultant again next week after CT and other scans so should know more then. It all seems a bit surreal at the moment. I went to my GP 2 weeks ago as I was having pains in my breast and some serious swelling and tenderness - I thought it was just a cyst and the few people I had told all said if there’s pain then its unlikely to be cancer - so yesterdays news completely floored me. They want to give me chemo first as its “unusal” (their words) and they want to reduce the size to hopefully avoid a mastectomy, but have warned me that this may still be needed. Thats all really, I thought I was quite young, but can’t begin to imagine what this would like if I was 10 years younger. My partner and I had already decided against having kids so the fertility problem isn’t an issue. The thought of being sick and losing my hair and boob is an issue though, vain girl that I am. The docs said chemo is like having a five day hangover…as my hangovers last a day or two anyway I just thought - I’m screwed!! Reading some of the other entries on here is making it seem a lot more real and more scary. Although I’m feeling quite calm at the moment… I’m sure all that will change very soon.
Just to let you know i was dx 3 weeks after my 35th birthday, and now through the other side it hasnt been easy, but you get through
There are some amazing people on this site and you will get tonnes of advice and support. You are not being vain, losing my hair was the hardest thing to cope with and nobody should have to be disfigured.
Sorry you’ve had to join us on this site please be assured its not as bad as people make out. you will get a lot of support and here.
I’m 34 was dx in dec 07 and had my ;last chemo yesterday 6.5 months in total - due to start rads and tamoxifen a soon. i must admit i have not had any sickness - just fatigue towards the end. Everybody react differnt to chemo and it depends what cocktail of drugs they give you. I know the hair is upsetting but it does come back and head scarfs can be trendy too along with hats and wigs.
Huggs to you and don’t forget we are all here to help and listen and advise, guide and support.
Take care
Sukes
I was diagnosed 8 months ago (i week before xmas) age 35. I still think I’m too young for this. And to add insult to injury, the cancer is HER2. I have had a mastectomy, so good bye bikini’s etc - my current wardrobe is so different - but it is amazing how you cope. I don’t look weird, very flat yes, even concave but not weird - I have quite a lovely scar on my chest. It’s my battle scar.
Chemo was hard on me - but at the time I thought I was doing quite well - everyone is different - just take it as it comes and you do get use to wearing scarves, painting your eyelashes annd eyebrows on - my friends i think have forgotten what I looked like before (lovely long dark brown hair - in case you you wondering).
I was dianosed on 2nd july, the day after my 29th birthday. It all seemed straight forward to begin with, i had a WLE 2 weeks ago, they said my cancer was grade one stage one and i should just need radiotherapy…
My WLE results were 2 days ago and what they thought was one tumour was in fact a cluster of 3 tumours of varying size. They are now doing a mastectomy and reconstruction in a few weeks.
I feel totally blown away. On the outside i’m being positive cos this means its unlikely i’ll need chemo or rads but inside i’m oscillating between terror, anger and resignation.
anna/sukes/karen - thank for the welcome. Its starting to hit home just how many women are affected by this alien being. Its pants, but I’m feeling more like I can handle it now the intial shock is wearing off, although there isn’t really much option!
Lou - oh no thats awful, just when you think you can deal with what you’ve been given and you get your head around it, it changes. I know what you mean about being postivie on the outside - I’m the same joking around saying to people “you’ve got to laugh about it” (have we?) but on the inside I’m just varying between screaming and numbness.
What is starting to confuse me is all the terminology. I’m sure afrer next Tuesday I will have a better picture of whats going on and some abbreviations of my own I have sooooooooo many questions to ask the consulant dude next week (I don’t even know what I am meant to refer to him as!) I am being strangely upbeat at the moment which all my friends are finding odd and seem to be finding it harder hearing me laugh rather than cry. But I think I have to be positive - I am v scared that it has spread somewhere else and I don’t want that to get to me or to show it.
I’m not usually one for sharing my feelings and thoughts esp on the phone (my job is listening to other peoples problems and helping them instead) so when I get a problem, I just turn inward and deal with it myself or with the help of my partner. But chatting on here is helping, there are concerns and questions that I feel I can say on here that my friends really don’t need to be troubled with. Does that sound acceptable?
Also on a completely different note - does anyone else have this crazy urge to clean and sort stuff out?! I am not usually the tidiest of people and just generally chuck stuff in boxes and forget about them (clothes, paperwork, make-up etc), but now I have this overwhelming need to sort everything out. Clear the stacks of clothes and shoes I’m not going to wear again, and shred or file the boxes of paperwork… my OH is surprised and and a bit unerved by it and he wondered if anyone else went through this stage? Or am I just “doing an Emma” ?
I did start throwing some stuff out but i think i thought i was going to die and din’t want people looking at my well worn underwear and clothing. - i also went through some paperwork but that was to make sure things were up to date i.e life assurance policy and what is does or doesn’t cover, health insurance, death is service kind of things at work - sad really i suppose but when your faced with something like this you can sometimes think the worst.
As for your appointment with the consultant - don’t be afraid to ask questions and i for the first few t imes took a list and asked him to write down the answers so i didn’t forget. questions like grading, staging, etc but you only ask question that you can deal with so you don’t get yourself in a rut.
I’m sure you’l be fine and don’t forget we are all here to help so if you ever want to ask questions please do.
I have sooooooooo many questions to ask the consulant dude next week (I don’t even know what I am meant to refer to him as!) I am being strangely upbeat at the moment which all my friends are finding odd and seem to be finding it harder hearing me laugh rather than cry. But I think I have to be positive - I am v scared that it has spread somewhere else and I don’t want that to get to me or to show it.