Newbie - AC chemo, PCOS, Zoladex & Skiing help!!

Hi there, I’m new to the site but have been viewing it for some time now but today I thought I should finally get myself on here.

Basically at the start of October I found a small lump (7mm!) on a Wednesday, saw my doctor on the Friday, was refer to the specialist the following Tuesday then was having the lump & nodes removed on the Friday, so its all happened rather fast. At 33 I did not except this, in fact I even went on my own for the check up as I was so convinced it would be OK, I told my husband to not waste his holidays coming with me to my appointment (big mistake, what a difficult drive home that was, I’m surprised I made it at home at all!) and had even arranged to meet a friend for lunch afterwards.
I’m lucky enough to live in Cornwall where they have a dedicated unit for BC and what a fab job they do, they are all absolutely amassing, I am so grateful to all their support. Anyway, I was lucky that following the op my results showed that it had not spread to my lymph nodes, however it came back as non-hormonal and HER2 +ve so onc has recommended chemo, then radiation with 1 year on Herceptin, the type of chemo I’m having is AC which not many users on here seam to be on, does any one know why this is the case (is it an age issue?)?

My 1st chemo is on the 8th December, they have timed it this way so I can go on a much needed skiing holiday (on the 13th December to 20th December) and then have x-mas with our family in Yorkshire, however am I kidding myself that I will be able to go skiing so soon after my first chemo?

I am preparing myself for the worse now (after all it doesn’t happens it then a bonus!) and I’m assuming that the chemo will make my loose all my hair, its long , curly & very thick, does anyone know if this is good as I was told by the nurse that the cold cap works best for thick hair but I’ve also read that its better with thin hair as the cap touches your scalp more the thinner your hair is?

Right, that the first bit, to make matters worse I also have Polycystic Ovarian Syndrome (PCOS) and I was going through fertility treatment as we had been trying unsuccessfully for a couple of years, I’ve had ovarian drilling (unsuccessfully) and have had my first round of Chlomid which makes you ovulate, everything was going well and my internal scan told me I was all ready to start trying but that was on the day I saw my doctor about my lump and we know what happened then, so basically everything was put on hold. My question here is that when I told my onc about trying for a family he just said that I would have to wait and see if the chemo had affected me after I’d had it all, I asked about freezing of eggs etc but was told no time for that and to just do the chemo and hope for the best, is this right, I’ve read on here about Zoladex but don’t know why I’ve not been offered this, can anyone help? I will ask my onc at my next appointment (pre-assessment this Friday) but thought it would be good to have the info first.

Hi Claire and welcome to the forums,

Whilst you await replies from your fellow forum users you may find BCC’s information written specifically for younger women with breast cancer, you can access this via the following link:

breastcancercare.org.uk/content.php?page_id=5256

For further support, information and a ‘listening ear’ please call our helpline, they can also refer you onto other support we can offer you such as our ‘Peer Support’ service. This 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.

The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2

I hope this helps.
Best wishes
Lucy

Hi Claire, I have just read your post, and may be able to offer some comments of interest. I am 36, was diagnosed in April this year, I too went to the hospital appointment alone (big mistake as you quite rightly stated!) Im a busy working mum and thought that I could just ‘fit in’ going to the hospital before picking the kids up from the childminder! There and then diagnosed with Breast cancer after mamo, ultrasound and biopsy. My treatment would be chemo, mast and rads. At that point I felt as if the ground had been pulled from under my feet.

My chemo started with 4 x AC which for me worked extremely well, I had multi focal cancers and the combined mass total had shrunk by 2 thirds after the 4th treatment. I then was to have 4 x taxotare, which did not work for me so well, so my onc took me off this after 2 x as she felt that I would be better going into surgery. I asked about the cold cap at my chemo unit and they said that it wouldnt make any difference, so I took their word for it and went without, within 3 weeks my hair was falling out, I shaved it off in the end (it was the hardest thing I think Ive ever done, unlike you I didnt have long hair but sticking out ears which I have never had on show! But on the plus side my hair did start growing again while on the tax and now I dont bother with my scarfs/wigs as my hair is about 1 1/2 inches long now, it has grown really quickly I think)

I too am HER+ so will be starting Herceptin after my rads are finished ( 2 weeks time) I am also ER+ therefore have been given Zoladex injections to stop my ovaries working, although slightly different as Ive had my children, and am only having the injections while on the waiting list to have ovaries out in Dec. I do know of a fellow sufferer who is a similar age to you and is having zoladex to put her ovaries to sleep while she is on chemo. I would deffinately ask about this as I remember the consultant giving me some statistics about fertility problems after chemo, but to be honest it wasnt something that I took too much notice of as it didnt really apply to me as I dont want any more children. you need to give yourself the best chance of preserving your ovaries for when this is over. May I just add that Zoladex injections are most unpleasant, if you do get them ask to be prescribed Emla cream, this is like an anasthetic cream and really helps, you just apply to the area an hour before the injection is due and it numbs it.

I cant say how you will be on your skiing holiday, but for me the AC chemo wasnt too bad, felt a bit sicky after a few days and as each one progressed felt increasingly tiard, but we are all different, so its hard to be able to comment. You might have in your favour that you have only had one cycle but thats just my oppinion.

Good luck with it all - PS just a coincidence but I too had chlomid a few years ago too.

Ness1. xx

hi Claire… I think others will post soon enough about the fertility dilemmas. I don’t know much about those options you’ve flagged up but I have noticed plenty of threads that discuss this difficult subject while iv been on the site. Good luck with that. I do however sympathise with the suddenness of your diagnosis and want to say how sorry i am that you find yourself on here with us… but welcome anyway as many have said this is a very supportive environment and a good place to get genned up. I didn’t come on till i was in your position, just about to start chemo post surgery and iv found it useful during the three cycles iv so far completed.

I just wanted to say that i have your same dilemma in that i have a ski holiday booked for feb when i will be on tablet chemo. I so want to go but really have no clue whether ill be well enough. As you read around you’ll realised how scary the risk of infection is and random bugs etc. Also just fatigue is a biggy. I could hardly get off the sofa with my last cycle but this time iv managed a walk every day. I really hope you manage to get going. I’m willing you on!!! but do take plenty of advice. Id also be interested in what has to be done insurance wise… do we have to tell them about the diagnosis? I have a yearly policy taken out before diagnosis… how bout you?
keep in touch
carmelxx ps Im 37 so only a bit ahead of you!

Oh and just to add, as iv read ness’s post too. Aren’t we all mad buggers turning up to hospital appointments in between work commitments or school runs… DITTO that was me. I had not idea the diagnosis was coming. Even the offer of a cup of tea didn’t sound alarm bells. My medical/ nurse friends have since told me that’s a sure sign of bad news!!! That was over the summer and it seems a bit distant now that i am battling with the chemo but it did make me smile to think im not the only one turning up to appointments without a care in the world only to be knocked sideways!!! xx carmel

Hi Claire,

Sorry to hear that you are joining us on here! I had AC last year and didn’t find the experience too bad, apart from hair loss- obviously!
I then had Taxotere and that had more side effects, I found that after the first chemo I felt relatively normal (apart from niggly things like a sore mouth and indigestion) I was able to carry on as normal and I wasn’t stopped from doing anything. I think chemo is accumulative, at the beginning I felt so well, but by my 8th dose (tax) I could barely walk and was very lethargic. If you are skiing as early as possible in the course would be advisable. We cancelled our skiing holiday for Feb half term, as I started my treatment at the end of Jan. Thinking back I would have been fine, but as it was still very much unknown to me I didn’t want to take the risk. Also with chemo, you need to expect the unexpected! I ended up in hospital, as my white blood count was so low (athough that again was on Tax, I was fine on AC!)

I guess what I’m saying is that AC is not too bad! and you can carry on pretty much as normal if you’re lucky and you certainly could go on holiday physically and ski! but chemo in general is nasty stuff and at times people do end up hospitalised due to side effects.

Good luck with whatever you decide, have a fantastic holiday if you do go…I’m not jealous…much!!. We waited until this year and had a fantastic ski holiday in a really good hotel (much better than we usually afford to make up for missing last year!) I did feel that my fitness levels were down, compared to previous years, but I coped.

I was also undergoing fertility treatment when I was diagnosed (I genuinely believe there was a link!) I was given Zoladex to protect my ovaries, but it didn’t work and my periods haven’t returned! That to me is the worst part of the whole experience, knowing that my dreams are over! But I am a bit older than you (40the beginning of my treatment ) and the onc did say that the nearer you are to the menopause the least likely that you are to still be fertile at the end of the treatment. and Zoladex gave me really bad menopausal symptoms, so you might be better off without it, but it’s worth discussing the option with your onc.

Take care and good luck, AC is not too bad, certainly ‘do-able’

Nicky

Many thanks for all your comments & kind words of support.

I think after searching for some more info Zoladex appears to only be offered if your BC is hormonal which mine is not, plus I’m sure my onc would of offered it too me had it been suitable??

I think I will have to have a ‘suck it and see’ approach with the skiing holiday straight after my 1st AC chemo and cross all my fingers & toes that my side affects are not too bad (although that might not help my skiing technique!)

My brother-in-law booked the skiing holiday & insurance (single trip policy with insure and go) back in the summer when I was blissfully unaware of my BC. I phoned the insurance company and told them the whole story and much to my surprise I was told that I was OK to travel & there would not be anything extra to pay, I was told to e-mail them all the details, which I did last week, and they would put a note on the policy but I wouldn’t be surprised if that changed but not heard anything else yet (fingers crossed)!

I really hope that my side affects are not too bad after my first AC chemo as we really need this holiday, as there are 12 of us going it will be a real laugh and a good distraction which is just what we need (I really think the NHS should run a travel agent with discount booking for us BC patients, if give prescriptions for holidays!!)
My fitness level is already low as I use to do ‘Body Combat’ 3-4 times a week but not been able to go since my op in October, plus the weight has pilled on with all the goodies that everyone has been bringing, I’ve been trying to walk a lot but difficult now with the wet winter weather, does anyone have any suggestions to getting fit (I hate swimming)?
Also do most people loose weight on AC chemo or again does it just depend upon each persons side effects?

Claire
xxx

Hi
I would suggest a Wii fit - we have one and its good fun, and you dont have to leave your nice warm house on a cold winters day.

Hi,
Have just read your post - sorry you’ve had to join us. I hope I can offer a few words of support. I was dx Jan this year and had 6*AC chemo, surgery then rads. Finished Sept - yay! I’m triple neg so no more treatment unlike your herceptin.

Firstly AC chemo. We’re all different, but I didn’t find it too bad. I managed to work pretty much through it, although it is cumulative and my immune system was hit hard so by no 4 etc, I had series of minor infections (prob having 2 yr old in nursery didn’t help!) and felt pretty tired. But I went straight back to work in the afternoon after first couple of chemo! So hopefully you’ll manage your skiing hol - you have the right attitude with suck it and see I think.

Secondly zoladex. I have one child but we were about to start trying for another when dx, so I asked lots of qu’s on subject. As chemo first, I wasn’t going to delay it a couple of months to harvest eggs etc. I was 37 when dx and onc said chances of chemo putting you into permanent menopause was 50/50 when age 40, so my chances slightly better. I asked about other options and my onc told me about a trial which involved injections of zoladex (I think) to see if it helped preserve ovaries through chemo (think trial was called option or something like that). No option of getting zoladex outwith trial. Trial was random though, so you may not get injections; it was going to delay my chemo several weeks, and the injections/side effects sounded harsh. So selfishly I decided not to participate in trial, and just take my chances. As it was periods returned in August - 2-3 months post chemo.

Finally hair. I also had long thick hair and was going to take chances with cold cap. Was told you needed good contact all over for it to work effectively so not to hold out too much hope. As it was I blacked out before first chemo having worn cap for an hour (quite happily). Thus I decided to take it out of the equation when I was rescheduled for first chemo. Hair started falling out 2 weeks later and by day 18 I had shaved it off. As it was shedding fast, shaving was actually a relief and not as traumatic as I had anticipated (still not something I’d choose though!). Stopped wearing wig in Aug (5-6 months on) and hair now thick, short but curly. Quite enjoy it short though - very quick to do! But will try to grow it again.

I put on weight during AC (almost half stone) - I found making sure I ate little frequently kept any queasiness at bay. Also ate wrong things as they tasted ok whereas other stuff tasted funny. Also much less active during chemo. Finding it hard to shift now, but I will persevere slowly! Others I know lost weight so all different.

Good luck with it all though - walking and wii fit both great suggestions. Take care,

Ax

hey claire,
i had AC followed by taxol, with herceptin - im also her2+ - but i was given Zoladex throughout. id ask your BC nurse about this. even tho it couldnt help treat my cancer as i was er- & pr- it can help protect your fertility. if your trying for a family i would definatly pursue getting zoladex, they give it as a shot, usually with your first chemo but i kno ppl who have started it after. im 24 by the way.
re the skiing, i think you’ll be up to it. i found the effects from the AC to be accumulative, alothouh i felt like s**t for abt a week after my 1st one i went back to feeling normal until my next cycle, it was then the side effects picked up. but like scotta above i managed to work thoughout. also i didnt lose my hair till after my second cycle. however, im a keen snowboarder and one thing to bear in mind is that i was told to really lay off the exercise whilst on the chemo as a long term side effect of chemo can be heart probs, which can be exacerbated by exercise during treatment. so if i were you just try and take it a bit easy, - although easier said that done i know when you just want to fly down a black run!
anyway, best of luck with your treatment
xxx

Thanks for all your comments, that’s really helped, I’ve got my chemo pre-assessment tomorrow so I will ask a lot of questions then but at least I now know what to expect.
xxx