younger women forums - should i go?

Hello younger ladies!, I’m 37 so not that young, and gather some of you are really way too young… I am new to this site having steered well clear of the Internet while i was getting my head round diagnosis, surgery x2 and learning about chemo. I feel differently now i have started my chemo ( a week ago and feeling a bit better now!) I have seen the forum weekends for younger women and wonder if anyone would like to tell me about their experiences. Do you think it is something i could benefit from even after the chemo or do you think i should try and get to one sooner, while I’m on the treatment? Thanks to anyone willing to chat.

Hiya, Im not into the forums, but been on this site for a while and its fab. Im 35, had op chemo and finish rads on tuesday, cant believe Im this far down the line, can remember how I felt at start.

Good luck
xxx

Hi Carmel

I’m 42, just attended the Younger Women’s Forum in Reading - had an amazing time and met wonderful people. It’s made such a difference to me, and to the other ladies, also, I think. Pm me with your e-mail and I’d be happy to tell you about my experience.

Cat

lisaf, thanks for posting. Yes i can see this is a good place to find out about BC and the treatment from others. I think like you ill be tapping in over the next few months. xx

I was 41when I went to the younger womens forum and had a really good time, learnt loads and made really good friends who I’m still in contact with and meet regularly. Definatwly worth going - they have different small group activitied so you would find one relevant to you at this stage.
We had a good cry at times but at others we were very noisy and definately the naughty table and the facilitators are brill and look after you if you suddenly get overcome or don’t feel well. Go for it and try to get athread going about it which is what we did so that made meeting each other much easier.
Kate

Hi Carmel, i was 38 at dx now 39. I have dithered over going to the young women’s forums but want to go to one next year as sound good. The next few are out of my area so will have to wait a while I think

Rach xx

Hi Carmel
I was dx at 37 now 38. I went to the young womens forum in Bournemouth this July, finished my treatment in April. Surgery x 2 (like you), chemo and rads. I really enjoyed hearing about others experiences and it was great meeting people under 60!! Everyone I meet in hospital was pensioner plus!
Are you near Hampshire? I go to a regular meet up with other younger women STARS, great socialising and very like minded girlees who do lunch and loadsa chat.

Vanessa

I went to the Young Women’s Forum in Glasgow last year… it’s for up to 45 yr-olds, and I was 44 yrs. I deliberated long and hard about whether to go or not, as I’m not really into the group-sharing thing, but I have to say it was an excellent couple of days… I have no hesitation in recommending that you go. I was towards the end of my chemo, but still had radiotherapy to go and still had a lot of issues that I was dealing with. Supportive as some friends etc were, it was much easier to talk with others in the same boat as myself. The various sessions were good, but the “down time”, e.g. over meals / coffee breaks, were just as valuable. It was good to speak with others who were further down the line than myself. Go for it… I’m sure you won’t regret it…

Ali

hi there
i’m 38 and went to the young womens forum in cambridge in march and it was fab. so much useful info and brilliant to be with people who truly understand what you’re going through. and amazing that its all free with BC Care. Go for it! xx

Hi I just turned 30 2 days before my surgery and 2 weeks after diagnoses - not how I planned spending my 30th!! My BCN mentioned about going to groups for younger women, but the thought did not appeal to me… saything that it did help alot talking to other women when I was in hospital and reading through the forums - The whole Cancer thing is still new to me, although I feel I am gradually becomming an expert in the subject!!! Maybe now I am over the initial shock and starting to talk about it more I may change my mind and go to a couple of groups in the area.

Hi there…
I’m so busy feeling sorry for myself whilst on Chemo ( heading straight for the chemo threads!!!) that I forgot to check back in here and read all these lovely and very helpful posts. Its really good to hear about your experiences which seem very pro forum. I’m going to make a move I think… The next one is too far away from me given chemo and how few good days i can predict… but I noticed one in Sheffield in 2009 which would suit perfectly… Any takers should start posting here because someone said that it might be good to get to know a few people before the event to make ice breaking a bit easier…
Up time, down time … it all sounds like Id get plenty from it even if Chemo was done and I only (!) faced rads and reconstruction…(I hate listing it all - its pooh!!)
Thanks for posting and also its good to hear from so many 37/38 year olds…
xxxxxcarmel

Hi, I was diagnosed in April this year, just turned 36 at the time, and I have already asked for the forms for the Sheffield Forum, I live in Lincoln so not that far away.
Ness1. x

I am now very annoyed to have missed the Cambridge one but was in hospital, has anyone been a long time after treatment has finished? Oh and I’m 42 now which is still young in BC terms.

love to all

Hi ness and wiizz - it seems from what iv learnt that people find the forum useful at various stages so i don’t think its ever too late as such. Ness, I think ill go ahead and get forms for the sheffield forum and will see you there. maybe we can chat in anticipation of attending! Im sheffield based so will be easy trip for me! xx carmel.

Hi carmel, Yes would be nice to chat and get to know each other a bit before we meet. I am hopefully attending with a friend who is unfortunately in the same situation as us. x

Ness, Iv just emailed for the forms etc, so job done. It will be good for you to have someone to attend with but how mad is that having a friend going through this at same time. I know a couple of mums at my kids school who went through it a few years ago and they’ve been really supportive, especially advising me about the chemo. It does still seem an odd club to be part of tho… I did hold back joining in with groupy things at first but i think I’m ready now. I’m also conscious that being so young there is a long journey ahead and making some friends who understand may be really helpful for days ahead. I don’t know whats round the corner and how ill feel when the immediate roller coaster of treatment is complete. xxcarmel.

Hi Carmel,
Yes this is the club that noone wants to joint isnt it. If you think thats mad that I have a friend thats going through this, then what abou this, she is one of two mums from my kids school which I am friendly with and I have another friend from work who only went to the docs after my diagnosis, and was diagnosed with inflammatory BC, 6 weeks after me. We are, 36, 37, 38 and 42.

I know what you mean about not wanting to join in groups etc, I felt the same at first, and in fact have only been adding comments on here for a month or so, was reading earlier then that but I was diagnosed back in April.

Just to let you know my history.
Diagnosed April 08
Multifocal cancer to left breast.
6 sessions of chemo, 4 x AC and 2 X tax
Mastectomy Sept, + node clearance 6/21 affected
15 sessions of rads (currently half way tho)
Elected ovary extraction early December
On Femara for 5 years
having monthly Zolodex injections to chemically stop ovaries from working until surgery
am HER2+ so will be starting Herceptin after rads are finished.
Recon hopefully mid next year.

Gosh sounds alot when you write it down doesnt it!!!

What about you?? how much do you know about your cancer so far?
Ness

hi ness,
not a million miles away from you I don’t think although I’m a bit crap on detail… here goes. Diagnosed July, multifocal cancer right breast. They graded it 2 i think. Mastectomy and then later node clearance. 5/13 affected. They talked to me about levels so mine were affected at the lower and middle level but not upper … ( That seemed like moderately good news at the time but hey ho its still shit). There was some delay over summer between my two ops because my surgeon was on holiday for a month but actually it worked out well for me because I had a holiday and spent time with the kids during their 6 week break which was fantastic. So Im doing Chemo now, Epirubicin and Xeloda (tablet chemo). Im having fourth epi in two weeks time then swap to Xeloda. Iv been told it will be rads after that and then i too have the reconstruction option. Ill be really interested to follow you with that because i imagine it will be quite tough even though i think it is what i want. My cancer is oestrogen positive so i will be on tamoxifen i think for for five years.

Its weird writing it all down isn’t it?
Thinking about your friendship group all being so affected by this illness - it must be so rare. I suppose it will mean good and bad things for you because it will be harder to escape, but on the other hand those women must really understand the fears and worries that we all have to cope with.

nice to meet you ness, and thanks for sharing a little of your story with me. I hope the forum proves to be a good source of support for all of us that attend.

xx carmel

ps others wishing to attend the sheffield forum welcome to post here and chat a bit before going. xxxx

Hi there Carmel, just wanted to let you know that I have now comleted 2/3 weeks of rads, and not that bad for me, although have developed a nasty pain in the neck leading down my arm. They dont seem too concerned with it and Im not really as it makes sense that all it is the way im having to hold myself for the rads. Had a bit of good news on Thursday, when they told me that my recent bone scan was ‘all clear’. I think that now my treatment plan is nearing its end (although still have to have Femara, and Herceptin) the worry will kick in over every ache and pain - and Im finding that quite difficult, dont supose its far from any of our minds after dx with this nasty thing.

Our cancers do have similaraties dont they, I wonder why they have put you on tamoxofen and me on Femara?? I thought I was put on it because of an age thing - obviously not.

On a different note, its very cold here, have you had any snow over in Sheffield yet??? I love the snow but we always seem to miss it as Lincoln is in a bit of a dip.
Take care and speak again soon.
Ness xx

Up late tonight so just checking in… Snow… saw it on the news and haven’t even looked out my window. I can feel the drop in temp tho. Funnily enough sheffield seems to miss the snow too. Obviously it lands on the peaks near by but i can’t remember much snow in the thirteen years iv lived here. Since we got a wood burning stove, i mind the cold much less cos its so snug in my living room when the fires on!!

Tamoxifen is just in my mind as something that has been suggested as hormone treatment but I haven’t been given the chat yet by ONC so don’t worry about discrepancy… I may be on something else when it actually comes to it. Good news about the scan… Its only really becoming clear to me that secondaries are a very real possibility for me in the future given my node involvement or at the very least recurrence. I think in the beginning getting my head around DX and the pending ops was enough without having to consider fuller ramifications. Im quite pragmatic about it and certainly intend to get on with things and not let worry hold me back but like you I think it will be hard to interpret aches and pains as just that : aches and pains. Who suggested you have the scan? Is it something we opt for or is it prompted by some sort of symptom?

Don’t like the sound of your neck pain… I hope it passes. Im just through the worst part of my epi 3 and am feeling loads better. I even went for a bike ride today with my daughter… not long but a good start. Iv got two weeks of living to do before I get blasted again!!
Take care and wrap up!
xx Carmel