Whirlwind!

Hi everyone -

Firstly, it’s amazing to see that I’m clearly not alone in this, but it still hasn’t sunk into my brain that this is all happening and feels quite surreal.

I’m 36, single, living in London and I was diagnosed, after two weeks of tests, on 28 April with stage 2 breast cancer. The tumor and two lymph nodes were removed on 29 April and I’ve been home recouping from surgery.

I had my bandages off today and can finally bathe (!) and aside from looking like a science experiment I’m coping, I think. Ii hits me in waves, I suppose that’s not unusual.

Monday, I go back to hospital to discuss my treatment. I’m mostly OK with whatever news I get, but to be honest, I’m a bit freaked out by the possibility of early menopause with treatment and being forced into decisions about fertility.

I’d really be interested in hearing from other pre-menopausal women in a similar situation or experience, but all feed-back is welcome.

Thanks!

Hi LondonNic

Welcome to the forums, I am writing to let you know that Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contacting the helpline:

breastcancercare.org.uk//content.php?page_id=7514

We also have information publications and services specifically for younger women which you may find helpful, you can read more via this link:

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

You may find our helpline useful to call to talk through the concerns you have about your treatment options, they can talk to you about our other support services too and also offer support, information and a ‘listening ear’. The number to call is 0808 800 6000 Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm. I hope you find this helpful.

Best wishes
Lucy

Hi Nic

Welcome to the forums - though I am obviously sorry you have had to join us. As you have seen - you are definitely not alone in this!

I was diagnosed on 1st Nov last year - had bone/liver/lung scans on 7/8th Nov, Mastectomy on 13th, path reports & treatment plan on 21st and started chemotherapy on 28th - as you can see mine was a bit of a whirlwind too. I was older than you at diagnosis - I was 46, married, 2 kids - (one 10 one 21) - still pre menopausal but not facing the same decisions as you with regard to fertility etc.

With regard to the ‘hitting you in waves’ - I was much the same, given the speed at which everything progressed, it was not until after my first chemo session - when I had time to sit back and think that I realised the enormity of what I was going through. When I was given my treatment plan (my diagnosis was Grade 3 tumour, 5 of 11 nodes affected and pr & er negative but HER2 +) - I can remember thinking that I would never cope - I was to have 4 x chemo, 20 radiotherapy sessions and then 4 x more chemo then a year of herceptin. Looking at it back in Nov it seemed to stetch in front of me forever - until I realised I had to break it down into manageable chunks and deal with each step as it came. And now? I have one more chemo session to go, then I start the herceptin - and I can’t believe where the time has gone!

And the ‘best’ bit on the way? If best bit is the right word, which I’m sure its not lol - has been the remendous help and support I have received from other people on here - no matter what it is you want to ask (and I’ve asked what seemed like very silly questions at the time!) there is always someone to give you advice and support - or just to listen when you want to vent a bit of steam.

The resource pack that Lucy has pointed you to is excellent as are the other publications - many of which will help you to decide the questions or points you may want to raise when you go back to discuss your treatment options. The only other thing I woulId say is that all of thre treatment, no mater how daunting it may seem - is extremely do-able.

I hope everything goes ok for you - please keep us posted as to how you get on.
take care

Margaret x

Hi Nic,
Sorry you have to join us but you will get loads of support on here and hopefully get to know others in a similar situation.
I also had stage 2 diagnosed after the removal of a lump then went on to have a mastectomy just before Christmas due to the type of cancer, lobular and its position in the breast, no lymph nodes involver and finished rads in February.
I’m not in your age group but do live in London, Redbridge if thats of any use to you. I had my surgery at a local hospital and then treatment at Barts.
I’ts a difficult time for you at the moment.
Lots of people describe it as a rollercoaster, and there were cetainly times when I just wanted to escape and felt the whole thing must be a bad dream.
Try to be kind to yourself, don’t expect to much of yourself, you are facing a completely new situation and a steep learning curve.
All the best Nic
Magsi

Thank you for the kind words, welcome, information and support. Magsi, I think my treatment will be at the Royal Free in Hampstead, I’ll know for sure on Monday.

Rollercoaster is the right word, but I am very glad my breast care nurse pointed me to this site. Thank you again for sharing your experiences and support.

best wishes to you all,
Nic

Hi LondonNic

Really sorry to hear about what you’ve been going through. I’ve been having some of my treatment at the Royal Free but most of it at Barnet General and Mount Vernon. I had Zoladex injections at the beginning of my chemo to switch off my ovaries in the hope they’d be preserved. I finished chemo right at the end of October and my periods came back last month which I take to be a good sign. I had fairly intensive chemotherapy so the chances of my becoming infertile were pretty high but not everybody has such a high dosage. Anyway I am seeing a fertility specialist in July so will know more then.

You are right, the whole thing is like a whirlwind but things do calm down and you do begin to adjust and accept as time goes on.

Best wishes

Ruby xx

Hi Nic,
Just a thought - have you got a friend who is able to go with you on Monday when you go back to discuss the treatment?
I found it really difficult to take everything in each time being in a ‘fragile state’ so an extra pair of ears was really useful. Try to make use of friends and family in the way that YOU need help and support which may not be in the way they offer it. People don’t usually know what we need but are quite willing to 'be there ’ for us as long as we tell them - if that makes sense.
A couple of friends wanted to visit me after I had had the mastectomy but for I really didn’t want that much preferring to go out and meet up for coffee, which they were more than happy to do.
Hope this is useful
I’m sure other people will be able to share ideas from their experiences
Magsi

Hiya’
Just wanted to say that i’m so sorry youve had to join us! As you live in London it would be easy for you to access Breast Cancer Haven in Fulham. They are a tremendous support. I have the number if you want more info.
Lots of love Julie XXX

Hi Nic,

I’m 39 was dx 24th Dec with grade 2 had WLE/SNB and all margins and nodes were clear. My treatment programme was 19 rads, 2 years of zoladex and 5 years of tamoxifen. I’ve fiished my rads now and have been back at work for 6 weeks.
To be honest the only downside of the menopause for me has been the hot flushes but I have invested in a chillow and seem to have got them under control. Luckily for me and my husband we decided a long time ago we didnt want to have any children so the fertility issue hasnt been a problem for us.
I am having the zoladex for two years and then will have an oopherectomy to remove my ovaries as will still be pre menopausal.
I’ll be honest this isnt the way I thought my 40th year would pan out and an early menopause wasnt something I looked forward to but as I was 100% oestrogen and 80% progesterone receptive and this seems to be my best option for reducing my risk of a re occurance i grabbed it with both hands.

I hope this is of some use to you, if you have any questions just give me a shout.
Good luck with everything. Love Shonagh xx

hi nic

i was 39 when diagnosed and very fertile - this was back in September last year. I am now 40, I was put on a regime of 6 x EC (chemo) and my periods stopped after the second one. I got the news a couple of weeks ago that I am now post menopausal - i have been plunged into a sudden menopause with all the horrid side effects that go with that. I would request, if your fertility is precious to you, that you ask for your eggs to be removed or at the very least that you are put on zoladex in an attempt to preserve your ovaries (although this method is far from foolproof). I wish you all the very best, starting this journey seven months ago, I never thought I’d be happy again. Turns out that despite the horrible down days that come with the treatment, that I have actually managed to have some great tiimes again too… and i’ve learned an awful lot about myself. the best thing is that the time does actually go really fast and before you know it you will be through your treatment. All the very best, Carrie x

Hi Nic,
Welcome…
I’m 44 and was in the process of trying for another baby (have 3, aged 15,13,& 3) when was Dx with DCIS & grade 3 lump. having surgery on Monday (mastectomy 7 recon) then chemo & rads after. Before I got the grade of lump confirmed, BC nurse said that if it was grade 2 they;d ‘offer’ me chemo but if it were grade 3 I’d ‘have’ to have it… (seems like choice is very limited with this disease…) well, it’s a 3 so out of my hands. As i have 3 babies already, we’ve decided to stop now.
ruby’s advice seems good…
Now I feel concerned as to which contraceptive to use… and do I need to do it forever?? I’m ER & Pr neg but Her2 pos so won’t be on tamoxifen or the like… and chemo doesm’t always make you infertile…

Hope someone is looking after you…

big Love Td xx

Hi Nic,
I’m in London and although my treatment so far has not been a whirlwind… 5 weeks down the line and still no treatment i am having a masectomy next week having being diagnosed with grade 3 invasive ductal cancer. I am being treated at Barts/UCH although for my original referral I was given the choice of the Royal Free.
I am 42, started a family late (2 girls age 2 and 4) and was most definitely premenopausal and in the process of trying for another when I was dianosed. Of course its different for me and as Ruby has described there are options open to you to do what you can to preserve your fertility.

Good luck
Helenxx

Waitingangel - good luck with the operation - I am having mine on Thursday. What type of recon are you having?

Hi Helhaven and WaitingAngel and Nic

Firstly Nic sorry to see you have to join us. Just wanted to second what Julie8 said about “the haven” as they are highly recommended. I would love to go myself but chicken about coming down from the coast all the way to London on my todd,…!!

Really wanted to wish you both lots of luck and rest for your forthcoming OPs. I was so worried about my mastectomy and a girl from my support group kept telling me its not that bad I now I have been there brought the t-shirt I can say she was so right.

I am another late starter with family as I am 43 and have a 6yr old and 18mth old. Hubby and I decided last year no more so I don’t have those issues to worry about ontop of everything else.

Don’t forget your own pillow for hospital, make sure you take plenty of comfort things and take care

All the best

Paula xx

Hello all

Hope things are clarifying for you Nic… as clear as they can be anyway… the booklet about fertility on this site is great and your onc will of course be able to answer questions, but it always helps to go in fully informed!

Helen - I’m having a mast with LD flap recon. It’s being done in 2 stages - main tissue based recon with mast then implant (or reduction of the other side) once rads over. I’m not keen on reduction - I’d quite like them to leave the happy breast alone… breasts are an important part of my sex life (& my husbands!!) so I’d like one with some sensation! What’re you having? Do you have alnother thread going?? I have ‘driving’ in undergoing treatment surgery…

Paula - thanks for the reassurance! It’s not the op I’m dreading so much a the chemo! maybe a group could meet up to go to the haven at some point!

Love to all Tdxxx

Hi TD

I know the chemo is horrible but doable…I mean that. I am half way through chemo and just had my last Epi…yahoooo now I am on tablets as I am part of the TACT2 trial.

Good luck with surgery and recon. !!!

Take care

Love P xx

Hi Nic,

I’m so sorry you’ve had to join us but ‘welcome’ to this most awesome site. Talk about a whirlwind, you’re not kidding!!! I was diagnosed with grade 3 bc in March last year, I was 34 at the time and don’t have children (yet!). A week after diagnosis I was in having a right mastectomy and total axillary node clearance. I knew v.little about bc prior to diagnosis to be honest, and it has been a VERY steep learning curve for me and those closest to me.

Prior to starting chemo in May I was desperate to have fertility treatment and have some eggs harvested. However, following long discussions with my boyfriend I eventually decided against this. My bc nurse was v.relieved, it turns out my bc is Er+ and having fertility treatment would have involved pumping me full of hormones which was just not an option for me. The reason my bc nurse was relieved was that we had already come to the decision that I wasn’t gonna delay the start of chemo, rather than them informing me that I couldn’t have my eggs frozen. Personally I didn’t want to delay the start of my next treatment (chemo) at all. Whilst I don’t relish the thought of potentially not being able to have children, I am hoping and praying it won’t come to that, I am still confident I (we) made the right decision.

I was apprehensive about the chemo affecting my fertility but my onc doesn’t recommend having Zoladex during treatment (can’t remember why, all docs are different though!). Luckily my periods continued as normal throughout chemo. I started Tamoxifen on Nov 1st and even that didn’t stop them!! So, now I am also having Zoladex implants to shut down my ovaries (temporarily I hope!!). The menopausal symptoms I have as a result are v.manageable. I get hot flushes and night sweats, and occasionally achey joints, but apart from that I can’t complain.

I hope all goes well at your appt on monday, be sure to let us know how you get on.

Take care,

Kelly
-x-

Wow, I don’t know who to thank first, just some amazing responses and very humbling as well. Thank you all for posting and sharing.

I’m a little overwhelmed by both the kindness and stories, but I promise and update and a more lucid response after Monday.

To those who recommended (and seconded) the Haven, I am going there Tuesday, so thank you for the info. I will let you know how it goes!

helhaven WaitingAngel and anyone else I have forgotten who is having an upcoming op - my thoughts and best healing wishes are with you all.

Nic
x

Hi Nic,
I just want to wish you all the best for Monday.
I’m glad that you have arranged to go to the Haven on the following day. I haven’t been there but have heard good reports of it and I’m sure you will be able to tell us more after you have been.

Magsi. x

Posted on behalf of new user Lisa

Kid regards
Lucy

I’m not sure if I am in the right area for my comments, I’ve never been in a chat room before so sorry if I’m doing this wrong!!

I was diagnosed yesterday with breast cancer, I’m 32, married for 2 years and have a 9 week old baby girl called Lillie. I feel like my life has already ended and I’m not sure I’m going to be able to cope. I lost my Dad to suicide when I was 17 and my brother died in a car accident the day after I got back from my honeymoon, I’ve been pretty strong through all of that, but am a mess at the moment, and that’s not like me. I love my life and I dont want it to end. How the hell do you cope with this?

posted on behalf of new user Lisa

Lucy

O.k I think I’ve got it now, I’ve started a new discussion, hope thats right!