Hello! I haven’t posted on here for a long, long time. Am 39, now 18 months post diagnosis (Grade II invasive ductal ca with DCIS in situ) and had mastectomy and ANC. Currently on tamoxifen (I hate it) and zolodex. Got married last year, lost my beloved mum to ovarian cancer, moved house, was off work with depression and have just had a tissue expander inserted with a view to having a breast implant based recon. Feeling a bit like I’m still in cancer limbo. The treatment is going ok, I’m happy about having recon, but finding that cancer is still having a massive impact on my life. I don’t want to whinge, I know there are other people worse off, but my last visit to the onc made me realise that the tamoxifen may well have put me through early menopause and therefore I might not be able to have children. By the time I come off the zolodex I’ll be 40, and by the time I finish tamoxifen I’ll be 43. I’ve been through a lot but I’m not sure how to cope with this news. Just wondering what others experiences have been? Any advice much appreciated! 
And just want to take this opportunity to apologise to anyone who sent me a PM that I didn’t respond to - sorry, I am crap :-D.
Hello special k
Welcome back to the forums. This is a very worrying time for you, I’m sure some of the users will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
June, moderator
Thank you June :). I hadn’t even thought about ringing the helpline but that’s a good idea. I’m sure it can only help to talk to someone here. Thanks again.
x
Not sure how much advice I can give but I think there is always light at the end of the tunnel.
I was diagnosed 6 years ago (how time flies!) at the age of 30. I had stage 2 and no nodes affected. I had chemo, radiotherapy and have just finished my 5 years of tamoxifen.
I can admit I went through hell, mainly because I so desperately wanted children before all the cancer rubbish started, and this seemed to put an end to it all.
After lengthy discussions with my (amazing!) husband we decided to go ahead with adoption, as we didn’t want to risk any reoccurence if I was able to get pregnant after finishing tamoxifen because my cancer was oestrogen receptive and obviously getting pregnant would flood your body!
We were approved as adoptive parents last July, and matched with our two little superstars in August. I have been a mum now for 6 months and it has been amazing and incredibly hard in equal measures.
I know adoption isn’t for everyone, but for us, it has been wonderful and the right choice.
I went today for a check up and there is talk of removing my ovaries, due to being pre menopausal. I can see the benefits in this, and instead of being cross that more ‘cancer’ things have to be done, see why.
I now go to check ups without the dread of previous years, and can honestly say, 6 years on, that it does get better, and easier. If I’m honest my worst time wasn’t actually during treatment but the following couple of years.
I’m not sure what I’m trying to say with all this, apart from I know how you feel, and life really does get better.
Thankyou for posting about your experoence suzysu. I am 37, was dx last year and have had wle, chemo, rads and am now on tamoxifen. Its great to hear stories proving there is light at the end of the tunnel. I was very lucky to have two boys aged 2 and 4 when i was dx, but am struggling a bit as we wrre trying for a third baby when i was dx and thats not going to happen now. I do count my blessings snd know i sm lucky to have my boys, but i still feel cancer has robbed me. I am glad things worked out for you with the adoption, but suddenly being a mum of two? Blummin heck, i bet that was hard! Fab you were approved despite a bc dx as i was told by my bcn that you couldnt adopt if you had had a bc dx.
Enjoy being a mummy
vickie
x
Congratulations Suzysu.
Special K,
I think it is quite common to feel worse after treatment ( except the tamoxifen) especilly with losing your mum and losing the opportunity to have children is a big thing to deal with. There is a thread called ‘thought I would feel great’ in after treatment has finished with a link to an article written by a psychiatrist. I’ve tried pasting the link before but the last bit always seems to get cut off.
I’ll try though.
cancercounselling.org.uk/nor … &Count=500
Hope you can begin to find some comfort soon. I think you deserve a whinge - you’ve had a lot to deal with. Indeed you are still dealing with it now. Have you tried counselling? it might be worth trying it. I’m sure the BCN nurses could put you in touch with someone.
Big hugs to you. Good luck. Stella xx
Special K - you’ll need to find the thread - as you need all the link, the black bit at the end as well - it always changes colour when I submit it.
Here’s a link to the article I think you are referring to by Dr Peter Harvey, available in the Cancer Counselling Trust website:
cancercounselling.org.uk/northsouth/extra4.nsf/WebResHarvey?OpenView&ExpandAll&Count=500
Best wishes,
Anna, BCC Facilitator
Hi special k, I read with interest your post. I read a lot on the site, but don’t often post. I thought my experience was a little familiar so thought I would share it too. I too have felt that I was in cancer limbo. Always waiting… waiting for results, for the next step in the process, waiting for tamoxifen to come to an end. …waiting for the next check up to get thumbs up and my mind to be put at ease for a while.
I was diagnosed in October 08, in the same week my new husband and I were accepted for IVF, a double whammy of disappointment for us as the diagnosis meant no babies or so I thought.
My cancer was grade 2, 33mm, invasive, ER+ with 0/17 nodes, I had mastectomy, chemo and tamoxifen and delayed LD flap reconstruction. Like you, hated the tamoxifen and what it was doing to my mind and body. I have to agree with others, my worst time was not during surgery or chemo, it was 18 months post diagnosis, when my mind started to accept and come to terms with all that had happened. I saw a counsellor and this helped me get my thoughts and fears out in the open as I wasn’t good at sharing them with those closest to me. After a year of tamoxifen and against orders, I decided to stop taking it. I knew the risks, but for me, it was the right decision as I experienced many side effects, mostly the uncommon ones.
My periods had stopped during chemo but returned 4 months afterwards, but the tamoxifen had a strange impact on them, to the point I was sure I was heading for an early menopause. Once off tamoxifen, they and almost everything else returned to normal. I have had it confirmed recently that all is well on the fertility front.
Knowing we were keen for a family, my team at the hospital did everything the could to help preserve my fertility, reduced chemo from 6 to 4 months, tamoxifen from 5 to 2 years with a view to us trying for a family 2 years post diagnosis. Given that my cancer was ER+, we sought information on adoption and applied in November 2009, a year after diagnosis. We were flat refused by one local authority, who said we had to wait 2 years, but two other local authorities accepted our situation and allowed us to apply. They take into account your individual diagnosis and circumstances, they did not apply a hard and fast rule. If this is of interest to anyone, I would say investigate your options, hospital staff might not be fully informed on such matters. On the other hand, let your team know of any plans for children. My consultants knew and responded to requests for information quickly so as not to hold up the process.
Sadly, my father in law got sick and later passed away, my mother was diagnosed with kidney cancer, so we put all of our family plans on hold . During this time our names were also on the list for IVF. We were told we needed to apply for funding as I was 39. The trust agreed to fund it based on my ‘exceptional circumstances’ which was the fact I could not undertake IVF before 39 due to my illness.
Two and a half years after diagnosis, we find ourselves in a very unique position but with a difficult choice ahead. Do we risk IVF and pregnancy given my cancer was ER+, all consultants have agreed we can try but outline the risks. Do we adopt? For us, it has been a very difficult 2+ years but the worst really is behind us now, the limbo is over. I recently turned 40 and I see this as a new beginning , we can allow ourselves to hope and dream and plan for the future. We are enjoying life as it is and will make our baby decisions in weeks to come, what will be will be.
I hope by sharing, this gives hope or help to you and perhaps others.
Best wishes
hello girls
I read your experiences not disimilar to my own at 34 ( in 1997)and not in a relationship I was diagnosed with bc It was 7cm tumor grade 3 and large areas of DCIS, I had mx imm recon, 18 weeks (6x3) chemo, tamoxifen and zolodex!! I was living away from my family at the time and friends were superb, a friend of my brother lived nearby and he became my chauffer running me and my supporters everywhere! 8 months later and with no apparent warning he asked me to marry him!!! In full knowledge of my condition and what it may mean, including not having children( he was with me and another friend when I was told the same stories menaupuse may be earlier and you probably won’t have children) we married on the august bank holiday in 1998 and moved to the welsh borders in 1999 ( to be nearer my family). In 2002 at nearly 40 we had a little boy who was and still is beautiful he was swiftly followed by a daughter, of course the most beautiful girl in the world!! I had her just before I was 41 and soon after was sterilised ( or who knows could have been a football team!) I didn’t want to ‘push my luck’ I has asked to come off the tam and zol and see what happened which I did after 2 yres stopped the zoladex, then the tamoxifen 6 months later, my monthly cycle kicked in and has been reasonably normal since. My little boy now 9 is autistic which has nothing to do with bc, in fact I tell my hubby I think he’s alittle bit autistic coz whatever he is the wee man is to a greater degree. We are a very happy family and life goes on!!!
I will have to admit in case you have read any other threads/topics that I am currently being treated for a new cancer DCIS in the other breast!! sucks I know, have had WLE and get histology report tommorrow!! I have had 14 wonderful years despite my previous bc and fully intend another 14++ years! of course it was a shock and I have my moments of worry (ironicly because of the kids) I have the odd bad day but every time I look at my babies I know that we have to fight and beat this thing!!!
My best wishes and hugs tio you all Jxx