Hello, I’m new to the site
Hello, I’m new to the site HI everyone
I was just diagnosed with breast cancer, had my surgery a couple of weeks ago, it was T1 N0, but grade 3 with lymphocascular invasion, triple negative. So, I’m up for chemo and radiotherapy asap. I am 36 years old, no children (ironically we just had a failed cycle of IVF a few months ago, no frozen embryos)…and I work as a breast cancer research nurse, which means I am more than aware of what a nasty, horrible disease breast cancer can be. It will certainly be strange and surreal to undergo chemo, after supporting other women through it over the past few years!!!
I live in London, and would love to meet up with the London group at some point.
Just wanted to say ‘Hi’ anyway…it’s a terrible diagnosis, and I just hope that I find the strength to get through it.
Fushcia
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welcome Hi Fuschia,
Welcome, sorry you have to be here but welcome anyway!
Thought I’d say a quick hello as your story seems a bit similar to mines. You can read about my info in my profile but what it doesn’t say there is that I was about to have IVF when I was diagnosed and I am a palliative care nurse.
Having extra knowledge has been good for me in many ways but equally it has also made my life difficult at times.
I kind of forgot about all the fertility stuff during chemo etc but now that I’m back at work and back to a bit of normality it really gets me down sometimes. If you want to chat some more just yell. I’m not in London but always up for a cyber chat.
Good luck, Carla x
Welcome fushcia Hi Fushcia,
welcome! Sorry you’ve had to find yourself here but I’ve no doubt you will find the support from all on here second to none! I was 34 when diagnosed and had my mastectomy in March. Started chemo last month, then got rads and hormone therapy. We don’t have any children yet, and are praying that that door won’t be closed to us in the future. Was going to have some eggs frozen pre-chemo but for various reasons we decided against. Will just have to wait and see what the future holds and cross that bridge as and when we come to it I guess.
Anyway, enough about me! I wish you well as you start out on your treatment. It is a long process, as I’m sure you are well aware, but one that we will all get through!
Take care, stay strong and be sure to let us know how you are getting on,
Kelly
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Hi Carla and Kelly
Thankyou so much for your replies, it’s really helpful to know I’m not the only one out there at this moment in time!!
It is strange being on the other side of the fence isn’t it, Carla? The whole experience has been surreal for me. I do think the extra knowledge helps, because forewarned is forearmed. Although sometimes I wish I didn’t know anything about cancer at all!!!
I’m hopefully going to speak to my fertility Consultant today, although TBH if it means delaying chemotherapy, then I don’t want any fertility intervention at all. I’d rather plough on with things.
I know there is a trial called ‘OPTION’ for hormone negative women, looking at the use of Zoladex in trying to preserve ovarian function, so I am going to ask my Oncologist tomorrow if he will consider giving me Zoladex whilst I’m on chemo.
Thanks for replying,
Fuschia
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Hi Fuschia Being 58 and post menopausal I’m not young but I am triple negative and been trying to raise awareness of triple negative bc issues for a while now. Wondering how much in your job role you knew about triple negative before you got your own diagnosis.
I’ve been posting her for a while and you should be able to find lots of posts about triple negatives on here. Also there’s another site which you can access on www.bcpals.org.uk, where there is a triple negative forum and also its possible to make personal message contact which you can’t on this site at the moment.
Really sorry to hear about your own diagnosis…unlike you I knew very little about breast cancer before I got it but I had a rapid learning curve. You will find the strength amidst the tears and the terror because we all do…there isn’t any choice.
very best wishes
Jane
Hi Jane
I do know quite a few patients who are triple negatives, and I wasn’t at all surprised when the surgeon told me the result. You are right that there isn’t as much awareness of it as the ER+ve cancers, and I think some women automatically assume they will go on tamoxifen - which is obviously of no use with hormone negative cancers. In some ways, it is not totally a bad thing for me, as it means I don’t have to take years of hormonal treatment which would impede whatever fertility I have left. On the other hand, I realise it narrows my treatment options, if I recur.
Triple negs are the minority of breast cancers, but then so are Her 2+ve cancers as well (about 25-30% are Her2+ve, I believe), and look how much publicity Herceptin has got.
I will have a look at that forum - thank you very much for the link - I’ll register now!
Fuschia
Hi Fushia
Sorry to hear about your diagnosis, but I’m sure that you will find lots of support on here. I’m sure that you will find the strength to get through this. I have had 7 cycles of chemo with last one Tomorrow. I can quite honestly say that at no time has it been as bad as I was expecting! I have been very lucky.
I too was having IVF when i was diagnosed, I wonder if the drugs I was on made the tumour grow I’m sure it wasn’t there before and it grew very quickly. I will never no for sure, but am grateful that i found it then, before I actually became pregnant (if that was meant to be!) My consultant advised me to abandon treatment and begin chemo straight away ( I am having surgery in July). She said that I should be able to go on and have IVF afterwards, but as I am 41 am sceptical about this! You being younger will possibly have a chance again in the future. If that is what you want, my priorities are different now, I need to preserve myself for my son!
Take care I wish you lots of luck with your first chemo and further treatment,
Nicky xx
Hey Nicky - lots of luck with your surgery, I’m glad the chemo went well !
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Hi Fuschia,
Just wanted to say if it weren’t for you being in London, I’d *swear* we had the same GP…
Good luck for your treatment. I’m about to start mine too and I think it’s the fear or the unknown that’s the worst thing (worrying about side effects, whether it’ll work, etc)
mousy
Hi Fuschiam,
Sorry you’ve had to join us on this site, but welcome anyway! I too am grade 3 with lymphovasular invasion, but am oestrogen +. I inquired about this trail, but was told it is only for triple neg ( so you’ll be an ideal candidate) , my oncol said it was been trailed in Swansea, she also did say the trail experts name who is leading it, but I’ve forgotton! Chemo brain! You’ll find lots of support on this site, I know I certainly have! It’s nice to be able to question and relate to people going through the same.
All the best with your future treatments,
Lisa x
Hi Mousy and Mearing, thanks for your lovely welcoming posts. I am starting chemo next week, FEC followed by Taxotere. I’m sure I will struggle through it, but it seems like an ordeal from here!!! Going to get my head practically shaved on the morning of chemo as well.
Fuschia
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Hi Fuschia,
Yes, it’s very odd being on this side of the fence! Understanding the terminology and what it all means and understanding how the body works is an advantage - sometimes. Only last month I gave myself liver mets because of some abdo pain; I worried myself sick for about a month before eventually going for a scan and it was all fine. The pain went soon after too! It must be worse for you though cause you are actually involved in BC in your work so therefore must have a wealth of knowledge. I am a sick childrens nurse and work in a childrens hospice which gives me enough knowledge but not quite enough at the same time.
I was offered egg/ embryo storage before starting chemo but it meant delaying chemo by 2 months and as my pathology was quite poor I said no. Did you manage to get to speak to your fertility cons? My fertility cons has been very good and kept us on the list, infact we are at the top of the list for any treatment as soon as we are (hopefully) ready to go back to it. I’ve heard good things about having Zoladex whilst on chemo. I’m currently on combined Zoladex and Tamoxifen for 2 years as I was 100% ER +ve and I have to say it’s not too bad!
Good luck, let me know how you get on
Carla x
Hi Carla
Are you on BCpals, because if you are I can PM you on there - because I think we do share a bond as health professionals. It is surreal for us being in this situation !!! Did you go back to work afterwards? Not sure if I will be able to.
I keep missing my fertility specialist, and am waiting for a phone call today (no doubt she will ring whilst I am at the Dentist and unable to speak !!). Basically I got given Zoladex yesterday, and due to start chemo next week (FEC100 + Taxotere). I had really sore legs last night, and wondered if that was because of the Goserelin, it went with some nurofen. I thought about having another egg retrieval, but decided that I didn’t want to a. go through the ordeal or emotional upset of another stimmed cycle (it does make you very emotional); b. didn’t want to delay chemo at all; c. also worried about hypothetically getting something like OHSS which would compromise everything and again delay things.
You are on the best side of 35 remember for fertility preservation… I’m sure your ovaries will come out of the other side OK and you can concieve later on after treatment is finished. I think it’s really important that you are at the top of the list for funded treatment, and you have a Specialist who is going to help you get pregnant. Look at the artist Sam Taylor-Wood who is about my age (36), she had both breast cancer AND colorectal cancer, and she had a baby last year, five or so years after her initial diagnosis.
Fuschia
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Hi Fuschia,
Yes, I’m on the ‘other site’ - same name.
I went back to work at the beginning of May on a very phased return after 11 months off - currently only doing 3 4hr shifts a week and it is really good; I feel like I was never away! My colleagues have been great and although I was worried about talking about death following having to face up to my own mortality it hasn’t been a problem so far. What is a problem though is that there are about 8 of the girls who are pregnant (only have about 40 staff so a huge percentage) and I’m finding that quite difficult.
My Onc has said he is in favour of pregnancy following treatment (I know some aren’t) and I’m pleased that the ACU has kept me at the top of the list. I probably wouldn’t be able to do a medicated IVF due to being ER+ve but have been researching Natural IVF and it looks good. My periods didn’t stop during chemo and I’m told this is good. They obviously have now due to the Tamoxifen and Zoladex which is also good!!!
I haven’t heard of Sam Taylor Wood (should I have?) but that is a fantastic story. And, the nice story by Liverbird on here about her friend. Gives us all hope.
Carla xx
IF you google her, you will see about Sam Taylor-Wood, she’s a very young rtist and as I say had two cancers and then had a baby. I’ve PM’d you over there.
Dear Wendy I have started a new thread for you with your post ‘First posting-undergoing treatment-Surrey’ so other users can see it easily, you should get more replies this way.
Kind regards
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Breast Cancer Care