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(12 Posts)
lalaa Wed 05-Sep-07 11:43:19

I saw on the thread about lymph nodes that you've just been diagnosed with breast cancer and wanted to let you know that I was diagnosed almost exactly 2 years ago at the tender age of 33 with a 2 year old. My experience was that there were few younger women with children in a similar situation (apart from on here, strangely, and tamum works in a field which is helpful), so if you want/need help/support, etc, please feel free to post or CAT me.

If you do a search on my nickname after 13 Sept 2005, you'll probably find all the stuff I posted at the time.

lalaa Wed 05-Sep-07 11:47:06

I have to pop out and pick up my dd from school (just started and on half days) but will check back later.

hellobello Wed 05-Sep-07 12:01:20

Thank you lalaa. How are you getting on now? What treatment have you had? They are discussing my case today and we will hear tomorrow what they have decided to do. I could have an operation as soon as next week. We are supposed to be on our way to Holland now, and crossing Europe this week. Everything is up in the air now. Bugger.

lalaa Wed 05-Sep-07 13:35:34

Hello again
It is a total bugger - really gets in the way!

I had a lumpectomy (wide local excision) and 16 lymph nodes out. I then had to have chemotherapy (FEC 75) (6 cycles) and then radiotherapy (20 fractions, plus 5 boost to the exact point where the tumour was) and then was on herceptin for a year. I was diagnosed in Sept 2005 and finished herceptin in may 2007. I'm on hormone therapy now (arimidex and zoladex) which will continue for another 3.5 years at least, but is a minor inconvenience really. I am well now - just had my 2 year mammogram and ultrasound and it was all clear.

I'm flitting and out at the moment, but will keep looking at mumsnet.

I don't know if this is any help at all, but I found the waiting at the beginning about the worst part of the whole thing.

Did you say you've got DCIS?

hellobello Wed 05-Sep-07 16:02:09

They say it's DCIS but it I also have a lot of pappilomas which they haven't seen before. I will be having a masectomy, possibly as soon as next week. It's still a bit of a shock.

lalaa Tue 11-Sep-07 13:00:22

Just wondering how you are?

hellobello Tue 11-Sep-07 16:04:53

I saw the surgeon last Friday who said it was a bit too soon to operate this week and that it is probably better to do the reconstruction at the same time as the masectomy. I spent nearly 2 hours with the nurse going through everthing I had already thought about, thought quite hard about, already considered. In fact it took all that time to learn a handful of new things. I could feel my shoulders and neck freezing up and my anxiety and fear increasing. Altogether a bloody awful experience.

The only positive thing to come out of it was to learn about a place (whose name I've forgotten) where the NHS offers lots of complimentary therapy. I am feeling really pissed off and PMT'ish and fed up and stiff.

lalaa Tue 11-Sep-07 22:31:15

It sounds as though the magnitude of what is happening to you is beginning to sink in. I recall that there's so much to learn and understand in such a short time because you need to make decisions (what kind of operation you're going for, whether you want reconstruction straight away or not, what all the new information means, hundreds of acroynyms and new words to learn and understand, etc, etc) whilst coming to terms with the hugeness of it all.

I remember being actually more than pissed off - I was enormously angry at everybody and the hospital (they messed up my diagnosis), but I worked out retrospectively, I was actually just very angry that it was happening to me.

I'm sorry that your anxiety is increasing. My experience was that I felt better once the operation was over and we'd had the news about what my prognosis was and what treatment I was facing. Although mine wasn't good news, we then at least had the measure of the task ahead of us and we were able to make practical steps to give me the best opportunity to recover. I actually read 7 breast cancer books in 10 days and changed my diet radically overnight. I became a dairy free vegetarian after reading Jane Plant's book about breast cancer, although I do now eat meat and a tiny bit of dairy from time to time. I think the book is called 'Your Life in Your hands'. For me, taking control of that gave me something to focus on when control of the rest of my life was being handled by the medical professionals. I did things like sort out my will, talk to my childcare providers about keeping things as normal as poss for my dd, claim on my critical illness cover, sort out stuff in our home that had been bugging me for ages, get a cleaner (i soooooo recommend that), and we arranged for family members to come and help out at weekends in the first few days after chemo, so that my dh had a bit of a hand. But I'm getting way ahead of myself, because you don't know whether you even need chemo yet.....

I'm wibbling on now....keep talking - it helps. x

hellobello Wed 12-Sep-07 10:30:46

DH is trying to get me some travel insurance so we CAN go away. We've been trying to sort out our wills for about the past 18 months. I'm fairly used to the idea of having a will so at least that's less of an issue. The surgeon didn't want to operate as soon as this week so I'm hoping I can have the operation in October. I've got another appointment today.

The nurse is very very slow. She told me nothing about the longer term implications of implants and reconstruction. What I need now are facts and figures, not pictures of operations.

lalaa Fri 14-Sep-07 11:11:23

how did your appointment go?

hellobello Fri 14-Sep-07 13:33:56

For now, I can feel the stiffness creeping up my shoulders and into my neck. My neck and head feel like a tree rooted firmly to the ground and gripping on for dear life. I was in the hospital to book a time for the surgery. I thought it would be relatively quick, but how wrong I was. I had quite a lot of the scans. I'm slightly worried about the lymph nodes - the doctor did another biopsy. They said I was ok to travel and we left it that if they need to operate before the October date to get in touch and I'll come back. I'm absolutely knackered and can't sleep, and I hurt a lot. Buger.

lalaa Sat 15-Sep-07 19:32:09

I think maybe just take a big deep breath and try and enjoy your travelling. It is good news that they are willing to wait until October - with me, I was in within 2 weeks. Just hang on to that tiny bit of good news. Enjoy the time you have and take the opportunity to build your mental stamina for whatever is ahead.

I had weekly acupuncture during my chemo and this is also supposed to help with emotional stress. I was also in psychotherapy for the whole time. Have you thought about having some psychological support throughout?

When are you off travelling?

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