I am 17 years old and i have just been diagnosed with a rare type of breast cancer called Phyllodes Tumour. Although i was only told this a few days ago, i have had it for 11 months now, because i was wrongly told i had a harmless fibroadenoma or a cyst. After the lump rapidly grew from small to 6cm within a couple of weeks i ended up having the lump removed. These results showed a malignant Phyllodes tumour. In a few weeks i am having a mastectomy, and then radiotherapy for three weeks. I am very nervous about the mastectomy and i would like to hear from someone who has had one to tell me what it’s like. I would also like to talk to someone with a the same type of cancer because i’m finding it hard to understand. and although the nurses and specialists are very helpful, i’d like to talk to someone who is going through/ been through the same thing. Also since i am very young i would like to talk to someone around my age to see how they are coping.
That is my story so far, and i would appreciate any comments or feedback on what anyone else has been through.
Ellie x
Hi, Sorry you have to be on this forum at such a young age.
Hopefully other young people will see this and respond. I would suggest that you also post the same thread again under something like ‘Anyone else with Phyllodes Tumour’.
There’s lots of help for mx on this forum. You could also post it again under mastectomy so you get responses to everything you need to know.
Good luck. Stella xx
Ellie
This BC lark is hard to deal with at any age, but my heart goes out to you, it seems even crueller in someone so young! You will find support here and it will prove invaluable.
Please also be aware the site will be down for a couple of days from Monday for posting to the forums, so don’t get disheartened if you don’t get anything in response during this time.
Hugs
SJ xx
hun, big hugs, xxx you may benefit from one of the younger ladies days, have a look on the info section.
i wish you loads of luck and best wishes, im 41 so not as young as you, bc has no age discrimination!! its crap. and i wish i could make it better for you, but you can do this hun, use the site as much as you need the support is second to none xx
Hi Ellie
So sorry you have to join us on here, but we’ll all help as much as we can.
I can maybe help a little with your mastectomy question, I can only tell you how it was for me. I had a mastectomy one friday afternoon and went home the following sunday morning. It really was fine and apart from feeling tired and sore, I was okay. Please try not to worry too much (silly thing to say really) but I’m sure others will be along on here to help if they can.
Sending you a big hug,
Love Laraine xx
Oh ellie love, hope someone your age comes along soon with advice, just want to send you a massive ((((((HUGS))))))) I have a son your age, and reading your post made me cry, bc is truly horrendous especially cruel at your young age, I hope you have loads of support around you, take care love xxx
Ellie - that is so awful for you and I can’t imagine what it must be like for you. Like the others, I can’t help with either that type of bc or your dreadfully young age but hope you have lots of support from family and friends, who may not know how to deal with it themselves, and the medical people caring for you.
I had a mx 3 years ago and they took all my lymph nodes as well. The surgeon did a fabulous job and my scar is always admired. It looks like a fine line or crease - I didn’t have reconstruction. I had surgery late on the Weds and was discharged on the Sat morning. I was a good girl and did what I was told and can honestly say I only needed paracetamol for a few days after surgery. It was a relief to be rid of the cancer.
Anyway, wishing you all the very best and hope that you can get more useful support before too long.
Liz x
Duplicate post
Oh Ellie, this isn’t fair. It’s difficult for anyone at at any age, but being 17 it’s a bit crap. I had a MX with immediate recon, in November last year and have recovered very well.
My two daughters aged 15 and 12 send their love to you along with their mates who were here last night, and I think it’s great that you have posted on this site and have helped raised awareness of BC in young people already.
Keep talking to your friends and family and get as much support as you can. I’m hoping that someone else will be along who has this type of cancer - you are a special young lady.
Take care of yourself and keep us all posted.
Rachelx.
Hi ellie
Firstly, welcome to the forums, I hope you are finding it a great source of information and support.
The first few days and weeks of a diagnosis are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.
I’ve given here the link to our Resource Pack for those people newly diagnosed. The pack is filled with information to help you better understand your diagnosis, test results and the various treatments available.
breastcancercare.org.uk/heal … tionId/82/
Also, do give the helpline a ring if you need any further support or information. They’re on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.
Best wishes Sam, BCC Facilitator
Hi ellie
at 37 i am much older than you, though still young in breast cancer terms! Really sorry to hear about your diagnosis . I was diagnosed last year with invasive ductal cancer, so a different type to yours, and i had a lumpectomy rather than mastectomy then chemo and radiotherapy. Basically my life went on hold for 8 months whilst i went all out with the treatment. You will amaze yourself with the strength you find to get through.
There are quite a few young girls diagnosed sadly, and a thread for girls in their 20s which might interest you. I will find and bump up the thread. Also, there is a charity called the willow foundation which arranges special things for people diagnosed under 40, and they can arrange weekends away, meeting celebrities, tickets for concerts etc, so when you feel up to it you could have a look into it and think of something special to look forward to.
It might also be worth doing a thread with the title of phllyodes (sorry spelt totally wrong!) tumour so other people with the same dx can spot your request for information.
Take care and all the very best,
Vickie
xxx
Ellie
I’m an old hag but wanted to give you a hug when I read your post. How very frightening for you, and your family must also be in a right state too.
Take a look at the younger women’s things, and please give the helpline a ring on Monday, they are really, really - helpful!
Hi Ellie, I too am an old hag as Choccie Muffin put it, but am about to have a bilateral mx on tuesday. There are several of us waiting for the op and we’re all in touch on ‘Anyone about to have a mx’. We’re all a fair bit older that you I think, but are supporting each other through the op with ‘virtual hand-holding’ and a few moans and laughs too. We’ve also had some very lovely messages of support and advice from people who’ve already had the op. You would be very welcome to join us if you think you’d like to. Much love and hugs, Lynne xx
Thankyou to everyone for your comments, and thanks for the advice about doing other forums about phyllodes etc, i’ve only just joined so i don’t really understand how these things work, but i’m getting the hang of it.
Its good to talk to people who are going through the same thing!
I’ve had some good news though, my CT scan showed that the cancer hadn’t spread anywhere other than the breast area so i’m relieved about that, and i have my bone scan next week so hopefully those results will be good aswel!
thank you for all your comments and i wish you all the very best!
Ellie xxx
Hello there Ellie
Oh my love, you’re so young to be facing a mastectomy, and it’s certainly not nice losing a breast, but it IS do-able, honest. After the op, you’ll definitely be in hospital for one night. You’ll have a breast care nurse, and the other staff will all be really helpful and supportive as well.
After your operation, you’ll have some bruising, but that all goes within the first few weeks. I had my operation last October, and my scar is really thin and just slightly pink in colour now. At 34B, my breasts were only small, and I now wear a silicone prosthesis, but when you’ve first had the operation, you’ll wear a soft breast form, which is usually called a “softie” or a “comfie” and is very light.
Ellie, i don’t know whether you’ve heard of the Teenage Cancer Trust, but they’re really good at supporting young people like yourself. They are a charity who fund special units within adult hospitals, where teenagers with cancer can be cared for. I think the units are quite small, say with six bedrooms or so, and each room has a computer with internet access and other really good facilities so that you can keep in contact with your friends. I dont know where you live, but it may be useful to find out whether your hospital has a Unit like this where you could have your operation.
Have a look on the Teenage Cancer Trustwebsite, because I think they also have a community forum you can join. I’ve worked with teenagers in the past, and that’s how I know about the Teenage Cancer Trust.
While I’ve been typing this to you, I’ve also opened a new window with another website - I’ve not heard much about them before, so can’t recommend them like I can the Teenage Cancer Trust, but here’s the link to this other website - click4tic.org.uk/Home. You might like to find out whether they can offer you any support too.
Also, there’s another charity called Winston’s Wish, who may be able to help you and your family if you have younger brothers, sisters, cousins etc. They do a lovely book called “The Big C” if you have little children in your family.
Lastly Ellie, we’re all thinking of you on here, so remember you can always come online here and write anything you want. We’re a lovely bunch of people on here. At nearly 50, I’m much older than you - just want to add what others have already said here - I wish I could give you a big hug!
Take good care of yourself, Ellie! xx
Dear Ellie,
I just wanted to add my support also. It must be a very scary time and my heart goes out to you. It is an awful disease at any age but at just 17, I can’t imagine what you are going through.
Like bubble trouble, I’m about to have a mastectomy, you would be very welcome to join our thread. Do ring the helpline, they are brilliant and will be able to give you a lot of support and info.
Sending hugs and lots of love,
Sue
Hi Ellie,
I just want to send BIG cyber ((((((HUGS)))))) to you my love xx
I am 34 and was a big shock to me when I was diagnosed.
I dont have the same cancer as you but I am sure some one will be able to give you more advise.
This site is great and really supportive, hopefully this will bump this post and somebody will come along soon and post some advice for you.
Very best wishes to you
Take care
Donna xxx
Ellie you sound like a very strong young lady. The advice the ladies have given you on here is spot on. The only piece of advice I’d add is that, as soon as possible after your mastectomy, look at your wound. Talking from personal experience, I found that the sooner I adjusted to it, the easier it was. Its nothing to be frightened of. In fact, for me, it was reassurance that the tumour(s) had gone.
Trust me, when you come through all this, you’ll be a formidable young lady. And will be able to tackle anything that life throws at you in the future.
You can do this kidda. Lots of positive thoughts coming your way x
Deb x
Im not young but I need to give you a hug and say how unfair life can be. Im wishing you all the best wishes in the world.
Oh Ellie as a mum I so wish that you didn’t have to go through this along with us all. I hope that you are able to link up with someone close to your own age to share experiences, but you will find lots of valuable support and shared information from everyone here.
Love to you, Sue