I was diagnosed on 9 june, following a week later Id had a double mastectomy. Results came back that stage 1-2 no lymph involvment and at 9mm.
Because i was only 22 when diagnosed they said that i didnt need chemo but offered it me anyway, but put me on tamoxafen and zoledax and i didnt have chemo my onc said that my chances of being here in ten years are in the top part of the 90’s.
A couple of months after the op and im so unbeleiveably paranoid and petrified that it will come back. I feel that at the moment i cant go on with my life as im waiting for the cancer to re-appear…is this normal?
EVERYBODY is telling me that i need to try and start moving on but as im so young, liteally not one of my friends can understand the aggony of day to day living. It was only the other day where i felt a pain in my shoulder and it seemed to be getting worse, so i walked out on my night out and went to A&E to see what it was and the doc told me that i was having muscle ache! Needless to say i felt like a bit of an idiot!
I feel alone and im really scared for my future but feel selfish as i know that im lucky because i caught the cancer so early.
This is such a hard thing to bear when you are only 22. I was 44 at dx and I thought that was too young! I completely understand your terror of it coming back, but I think that only those of us who have had BC or similar do understand that. Most people your age will never have had to confront the possibility of their own death, and the potential loss of future.
From talking with others, I think it takes a long time to get used to, and for you it is still very early days. Here is a link to an article you may find useful. It doesn’t deal with your specific problem of being so young, but it does explain why you are finding things so difficult at this stage.
Hi Emily
Everything has happened so quickly for you, it does take a lot of time to readjust, you have been through a big physical change and what I found was an even bigger upheaval in terms of thoughts and feelings. And of course for everyone its different. Its very easy for other people to tell you to move on but I expect they haven’t been where you have and even others who have can only share their experiences and give information.
I had a mastectomy back at Christmas, no lympth node invovement, 3 weeks of rads due to 1mm clearance between the clear margin and the chest wall. Was offered Tamoxifen but decided not too. My stats are in the low 90’s and I am older than you.
So its now 8 months for me since the op.
I have moved on a lot but its not instant, there a little steps and big steps along the way.
I’ve walked around the lingerie dept of M&S in tears, I’ve got changed in a communal area at a spa and wondered whether I should hide behind a towel or not bother. It took me several months to get the courage to go into a shop which just sold mastectomy wear.
But I have also done things again that I used to do. 5 months after surgery I walked up The Old Man of Coniston in the Lake district and felt sooooo good - a real milestone for me. At the weekend I walked 14 miles of the Thames Path and the last time I did that was BBC (before breast cancer)
Accept that at times it will be hard and emotional but there WILL be times when something happens that is a step for you on the road to recovery, a real step of achievement and celebrate that however big or small.
I was just about to post the same link as Roadrunner has, its an article by Dr Peter Harvey called After Treatment has Finished.
If by any chance the link gets removed just google Dr Peter Harvey After treatment has Finished and it will come up as the first link
Yeah i have had the same experiences already, i can honestly say that there is nothing worse than shopping for underwear and cloths, i have found myself buying and wearing things that i would never of dreamed of before, i burst into tears at topshop and walked out its soooo hard to hold the tears back.
I have split up with my boyfriend too which has made things harder as now im scared of meeting somebody else because if the scars.
The only person who knows how i feel the most is my best friend leanne but everybody else seems to think im over it already and i just want to scream at people because if im being honest i feel like crap constantly but i dont want to drag anybody else down with me, there was a time about 3 weeks ago that i did exactly that and screamed at a man because i thought that he was being selfish with a parking space, I couldnt beleive thati did that when i got home as its completely out of charicter and would love nothing more to apologise to him now as he didnt do anything wrong…i felt so guilty!
I also worry so much about my sister, we have a strong family history of breast cancer in our family, my mum and both of my grans died of BC and now she can have genetic testing off me, but the thought of her having to go through this makes my skin crawl.
Thank you for the link, it does make sense and i feel like im on that rollercoaster at the min and i know that time is a great healer, i think that i have to beleive that things will get better.
Im sorry if im going on and on and i know that its depressing but this site has been a godsend beacuse its re-assuring to know that your not completely on your own!
Emily, another absolutely normal thing after diagnosis is completely losing it at times, often with some poor soul who didn’t deserve it. There’s a deep well of anger in most of us at what’s happened to us, and is going to go on happening - so even a long time after, you burst into tears over nothing, or scream at someone who pinched your parking space (done that…) Tears other people understand, but the anger, the absolute fury at times - they don’t.
If you know them, you can always say “Sorry, having a rough time at the moment, I was yelling at the world not you” - or just forgive yourself, take a deep breath, and go on.
It’s a bugger to deal with, especially at your age - no, most of your friends aren’t going to “get it”, and some of them will start talking to you in a special voice. That does take some toughness to put up with, it drives me nuts at my age, and they’re not all people you can let rip at (in my case, my employer!) Not many people as young as you on the forum, but there’s always someone about to rant or whimper at - whichever you feel like at the time.
I thought you may find Breast Cancer Care’s peer support service helpful, our Peer Support telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding. You may find this support helpful to you at the moment.
For more information about this and our other support services available to you, please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm), or email:
Emily
It’s very early days for you what you’re experiencing is normal (what’s that!)
I had counselling 6 months after dx and that really helped.
This website was a lifeline for me. There are so many wonderful people out there who will give you the reassurance you need when you feel like nobody understands.
Please be kind to yourself and take as much time as you need - there is no right way or timescale for your recovery.
fantan
I’m 24 and was diagnosed in early May… I completely understand where you are coming from!!! Because we’re a lot younger its like there’s more time for it to redevelop and because its a disease that is more common in over 50s I had the irrational fear that the chance of it coming back after I turned 50 would triple!!!
I also caught my bc early but it was grade 3 triple positive and had spread to my lymph nodes so I’m currently having chemo and then radiotherapy. I’m surprised they didn’t give you chemo though because my nurses put anyone who is younger through chemo.
Its difficult as well because I’m assuming you have friends of a similar age that haven’t been through anything even remotely as difficult and will just see that you’ve had an operation and that its all sorted and done! I don’t think you can rush how you feel and it is an emotional rollercoaster but at the same time you do need to try and make steps forward even if they are small so that you’re moving in the right direction.
I’m sure you’ll get there! I think writing on this forum is a great step forward… I’m on the old Facebook so if you want to speak over that let me know and I’ll send you my name.
Yeah i know i was really really un-nerved when they said that i didnt have to have chemo, but am assured that Zoledax and Tamoxafen does the same job as chemo and tamoxafen because of the stage that the cancer was at…i had a lot of opinions on this trust me! Sid that i would have only had a 1% benefit from chemo and
my chances of it not coming back are in the high 90’s.
Im sorry that you got it so young too Erin. I hope that its all going as smoothly as possible for you.
I dont have a facebook as yet but ill get one soon… i NEED one apparantly!!
hey emily,
just adding to the solidarity! - im 24, was 23 when diagnosed. my doctors said the same as erins - that because of my age they would want to give me chemo whatever the surgery showed. my cancer was also grade 3.
hope you go okay on the tamoxifen, im not having that as am ER- and PeR- but had the zolidex for chemo and its not so bad - other than the hot flushes, just dont look at the needle thats all ill say!
how did the double mastectomy go? - did you have reconstruction?
i completely understand your fear of it coming back, i was diagnosed 6months ago but its only really just started to hit me now, am also finding it very difficult to get on with life. i agree with erin thats its very difficult not having any friends that have been through a similar thing - hope your doing okay erin!
if you want to talk some more feel free to msg me privately or as and when you get facebook (edited by moderator)
xxx
Well that really makes me feel a bit worried. I was assured that there was no need to have chemo as it wouldnt really make any difference and if it did it would only be by 1%. I think that i need to speak to somebody else as this is what makes me really worried! I know that women with bigger cancers havnt had the chemo and they were in there late 30’s, im not sure if its because mine was at a really low stage, small and isolated? Ill go back to the hospital again tomorrow, but surely if they thought that i needed chemo they would have made me have it? It also wasnt just one opinion that i got it was several.
Mastectomy was fine and was the least of my worry’s. I was going to have that before i even found out that i had cancer as i was at such high risk but i was going to wait until i was 25. I opted for the implants as they said that i was too thin to have the other ones at the time as i didnt have much fat (the tamoxafen has sorted that!!) and also there is less scars with the implants so i opted for those. They are still filling them at the moment but i have shape back now and they have gone back to my old size so i dont have to wear the breast pads! Should be jan before my next operation…i dont mind if its longer though, it really is the least of my worries.
I hope your ok too, the shock of having cancer for any woman/person is so distressing but i can imagine you had constantly being told that it was nothing then all of the sudden its cancer? Nobody expects to get it at our age so you dont think that there is anything wrong at first! Its horrible!
Have you thought about speaking to somebody proffessional to try and put a few things to rest? I have been told that that helps alot.
P.s Ive just had my birthday and am 23 now! Wasnt the best!
Sorry to butt in on your chat as i am a old girl off 44 and it.s kicked me up the a*** as had a "feel sorry for myself " day today and realise that it’s nothing compared to being a “young un” with this thing happening to you.
Just felt i’d got to tell you that if you get chance for some counselling take it as sure it will help you move on.My original brush with the big c was when i was 15 and had Hodgkins Lymphoma that was fairly advanced so chemo and radical radiotherapy and went into remission for 9 years and in that time refused to go back to school to do my exams so drifted into working and got married and had 2 kids who are now your ages 22 & 24.
After the remission & at 24 with my 2 aged 2 & 4 i developed a tumour on the chest that was caused by the mantle radiotherapy i had to “cure” me.I had successful surgery at the wonderful Royal Marsden and again just got on with it as that i thought that was what you were supposed to do?
Now in january at 44 and with my first grandchild just 2 weeks old i was dx with bc,knew i was high risk due to the previous radiotherapy but still a kick in the teeth.Had mastectomy in march with TUG flap reconstruction (OMG never again) and have no 6 of 6 FEC chemo on wednesday and been advised to have Tamoxifen for 5 years or maybe Arimidex as joy i am going through the menopause then probably mastectomy to other breast.
Sorry about the waffle but now to the point,feel i have never dealt with what happened when i was younger and it’s affected my adult life and relationships so this time i am going to have counselling so i can move on and would like to think that you will do the same,feel so much for you being so young and when you have won this battle want you to make the most of the rest of your lives and move on.
I know birthday’s aren’t the same after being diagnosed but try to remember that it’s another year to getting older - and getting older is a blessing. I try to keep telling myself this, as I also want to grow older. I was DX last Dec age 35,which I think is young, but it is so not as young as you. I can’t imagine dealing with this at your age and I don’t think you should be, actually none of us should.
Sweetheart, 23 is a good age, it will the age that you fought and won! You are amazing.
*emily, try not to panic too much about the chemo, im sure your doctors know whats best for you, but you can never be too sure. prehaps they dont think you need chemo because its a lower grade than mine and erin’s. hope your app today is okay. i had an app with my surgeon yesterday and he thinks a bilateral mastectomy is the best way forward. im so impressed with you saying its the least of your worries! - is it really okay? how much does it hurt? are you having the tissue expander then replacement with implants? thats what hes recomending for me. any pearls of wisdom you have would be much appreciated!!
and yes it was a bit of a shock being told, - your right, everyone kept telling me it was nothing! theyr now recomending me to go see the genetics team and find out if i have the gene. so sorry youve had to live with the fear your whole life.
*emily & bling444, yeh i have thought about talking to someone, when this first all kicked off i was so determined it wasnt going to affect my life that i didnt even consider it but now im thinking it might be a good idea after all. i just had my birthday as well emily, was very bizarre…
*bling444, sorry to hear youve had to go through this so many times, its bad anough just once! wishing you all the best for your last chemo.
The mastectomy is painful…and i found that i had really bad back pain after, and after i get the expanders filled. It took me a few days to be able to look at myself but when i did, it really wasnt that bad. The way that i look at it is that that operation had saved my life and got rid of the tumour that was threatening my life. I had the double mastectomy as it was also a preventative method for the future.
I had the expanders yes. I find that i can get aches after i have been but this usually only lasts for a couple of days. This time next year ill look like any other woman but just have a scar on each breast but there is bio oil for that!! My next opp is due around jan and thats when she will put the implants in, if you think about it there are less scars with this opp and it does take longer to look “normal” but you are seeing your surgeon on a much regular basis also so if there are any queries etc you dont have to make an appointment as you will see him/her every 2 weeks!
Thanks for the birthday wishes aswel that means alot. I know that im really young to be going through this but i know that everbody’s situation is different and im sure that its been more stressful for some people as they have kids and probably more responsabilities than me. And i think to have cancer as young as 15 and then it coming back is awful…you must be feeling awful, I cant imagine.
I have spoken to my macmillan nurse again this morning and she said that there was defo no need to have chemo, and if my onc had thought for a min that i would need it then they would have pushed me to have it instead they pushed me the other way…which is true. She again explained that my cancer was really small and isolated, not spread at all and a low form which made me feel better, I think that we are all different and in situations and have different cancers etc…i think ive just got to accept that if its going to come back then its going to come back and there is absolutly nothing that i can do about it and in my case the chemo really wouldnt have prevented it if it does.
I think im going to look the councelling thing up…i think i may just need it!
Hi Emily, my heart goes out to you. Even though I am much older I recognise so well what you must be going through as I am sure so many other ladies will. It does get better eventually, it will take a long time, you will need to be very kind to yourself in the meantime.
I have some suggestions.
Consider a reconstruction of you are not having one asap. It made such a difference to my mental state.
Get as much counselling and also peer support from other ladies in your age group as you can possible find. Are you near Breast Cancer Haven? - London and Hereford. They did miracles with me. If not try and get some counselling very soon from someone who understands - be persistent and do not be fobbed off.
As other ladies have said, surprised you have not had chemo. Are you aware that you are entitled to a second opinion on the NHS? Find a good hospital with a good reputation. Once again do not let them fob you off. Why no radiotherapy?
Very much hope things go well with you. Big hugs, Ariadne xxx
emily,
thanks so much for your insight into the double mastectomy at such a young age, am desperately trying to get my head around it… so with the expanders then they dont fill them up straight away? that sounds like a scary prospect having to wake up from the op with nothing there…
im sure your doctors are right about the chemo thing, they know your situation better than any of us. perhaps you just had DCIS as opposed to invasive cancer?
anyway, so long as you are happy with your treatment thats all that matters.
i agree with ariadne about the breast cancer havens, they really are amazing places, tho saying that i still havnt managed to use many of the things they offer as has been so difficult trying to fit my treatment in with working full time, im knackered!!
xx
Hi
I watched a film the other week called “why i wore red lipstick to my masectomy” and i think although it might make you cry in bits, it will also make you smile!!! I found bits of it described how i was feeling very realistically, its about a 27 year old woman so it might be worth having a look
Anna