********The 37th Tamoxifen Thread, Fun and Tears in "Cancerland" *****

[Copthallresident]

Trolley Rolled over and "Its a small small world" playing on the ipod on repeat.

MAS I had to google what a bears paw was ! Looks yum

it was !

Hi Betsy - It sounds like you are at a similar stage to me except that I have had all the scans done now. My tumour is ER+ which the oncologist was very pleased about and he stressed that the on-going hormone treatment would be the most important thing - more so than the chemo. I'm sure once you see your onc you will get all that type of info. Anyhow I am starting chemo next Thursday but he's not sure it will do much.

Like you I am expecting to have mx after chemo unless there is a decent amount of shrinkage (not expected though). BCN said it also to do with the fact that I do not have large breasts so less tissue to play with . She said the result would probably be better with mx and reconstruction than with lumpectomy.

It looks like I may be joining the club here - hoped not to but have been to hospital today for mammogram and ultrasound and biopsies and the radiologist says that it looks "suspicious".
All alone at home as DH is away on business until Sunday (and I hadn't told him about the appointment as we've had a lot of health problems in family recently). I had to creep out of the house to avoid seeing DS2 who went off to the USA for a summer as camp counsellor. I don't want him knowing about "it" until he comes home in late August as he has already had to cope with being diagnosed with chronic myeloid leukaemia 18 months ago, so knows the inside of oncology wards for himself.
Question for the moment is - I have BUPA through work ... should I use it? Local hospital is big regional centre/famous hospital and I will presumably see the same people anyway, but I would fancy a bit of comfort and decent food should I be hospitalised.

Sorry you are here lilymaid and must be horrid to wait when home alone. I would say yes to using bupa as it will just ease the way in terms of easier to get appt time and get slightly nicer time in hospital . I have done same and get treated by Nhs drs and in Nhs hospitals sometimes so as you say treatment is same.

Welcome lilymaid though sorry you find yourself here, when do you get your results ? is there anyone else who can come and keep you company while dh is away?
Everyone here is lovely and will answer any questions you have x

How are you today gigs ?

Hi Lilymaid - I decided to go private after the initial diagnosis - and like you say it's the same teams but in nicer rooms with better food I decided to go for it but do realise the treatment is the same as the NHS have got this pretty sorted now.

Lily Hopefully you will not be checking in to the club you can never leave but if you are then you will be welcome and there are plenty of us to demonstrate there is life after dx, maybe a different one but with lots of laughter along with the tears. It must be very difficult to be completely alone coping with your thoughts, do you not have a friend you can confide in. Please feel free to do so here....

Just in middle of same dilemma in reverse. DH retiring so need to decide whether we continue with private insurance at our own expense. My feeling is that for me it won't make a great deal of difference. I would still be in the care of my Consultant, and have access to a centre of excellence in Cancer treatment and all that entails. Really it is just about a nicer waiting room, getting immediate appointments and operation dates, being sure of always seeing the Consultants themselves, not having to wait hours (not even sure they do wait hours in my hospital as haven't when having mammograms, scans etc,). I'm not sure this makes any difference to the standard of care or your outcome though. I did get a few add ons paid for, like massage, physio (though actually my GP always happy to refer me to practise physio who is excellent)

I also have had a few annoying hassles getting things paid for, their processes are geared up for things like knee opaertions that are done and dusted so for instance when the Consultant felt I should have a bone density scan after five years of Tamoxifen to determine whether I went on to another drug they took a lot of persuading that that was related to my breast cancer treatment, because of course having chemo and an early menopause does not put you at risk of bone density loss even if as it turns out it actually has led to me having a low bone density. Same palaver when Consultant recommended a vaginal ultrasound when I had the odd period during Tamoxifen, to rule out Endometrial Cancer which is an increased risk.

Welcome too from me lilymaid - feel free to ask anything you like as am sure someone will have an answer.

Thanks everyone for welcoming me into the thread - I will keep you all posted and hope to pick up some good tips from you all.
Best friend locally is coping with a dying father, so don't want to burden her until afer DX. Boss is very sympathetic and I'm sure I can get through until Sunday when DH gets back. Once DX I will tell other friends and work colleagues.
I will also tell both DSs at same time - when DS2 is back from his summer trip (he deserves it for coping so well with CML). DS1 is 9k miles away - coming back on leave at Christmas.
I think I shall indulge in some retail therapy tomorrow to keep up my spirits!

Welcome lilymaid and sorry you're doing this alone for now, please vent here all you need to. Don't despair yet though, it could still be good news, but if it's not we are here with cake etc :) when will you get results?

I'm having a bit of a wobble this afternoon as I found the first oncology letter about my treatment plan etc. I hadn't read it as ex read it on my behalf. I didn't realise it was in the pile of papers I was sorting so just flicked through and and of course landed on "due to nodal involvement and tumour pathology she is at extremely high risk of recurrence" yippee! Ex had spoken to various docs and had told me it was 60% chance of recurrence which to me is higher than I'd like but not sure I'd say extremely high. Although all the others in my CLIC Sargent group talk about 10% recurrence rates so I suppose 60 much higher than that! Anyway just feeling a bit bummed out but trying to remind myself cancer is a massive nuisance and life will go on :)

Well I got way-laid there with phone calls and school run...so trying to catch up..

lily - welcome but sorry you might be joining us. I was where you are now about two and a half weeks ago and it's a horrid place to be. The ladies here are lovely though :) They wisely told me that this bit with all the waiting and uncertainty is the worst bit and I think they are right. Just today a plan of what next for me is falling into place (chemo next) and already I feel "better" and just want to get on with it now.

Smee - hope you are home and feeling okay after your GA - sending quick healing vibes your way.

Gigs - how are you doing? Hope your leg is getting better

Ruby - Hope you are feeling better too.

malt - I hope your seroma disappears by itself

kitkat - It's good we can share this journey together :) (malt might join us too :) ) and as you're a week or two ahead you can be my resident expert of what comes next :)

copt - I'm assuming they will do hormone therapy too (is that the onc who sorts that as well?) Still premenopausal here (have warned DH of likelihood of short sharp decent into menopause once chemo starts, so he is prepared! )

to anyone I've missed.

I think smee said she had a double mastectomy? Anyone else? Is it possible to do on the NHS? It's something I'm seriously thinking about - I never felt the lump until quite recently and all of a sudden it seemed a huge one appeared from no where (quite common with lobular cancer I think?) The thought of the same thing happening in the other boob is scary. I've also got HUGE boobs so would be terribly lopsided (and I've always wished I had smaller boobs!)

Cross posted lilymaid, retail therapy sounds just the thing and glad boss is being supportive :)

oh yes, retail therapy is essential...
ruby it's always a bit of a straightener seeing stuff written down - but yes, cancer is a pesky nuisance but life does go on

Hi lily and welcome. I've got giant choc buttons (on offer in tesco.) Chocolate is almost compulsory for the shock of a referral.. chances are it is not as bad as you can imagine - still chance of benign or low grade easy to treat and even if rudely behaved sort odds are in your favour. Retail and food therapy are good.
Ruby bugger coming across letter unexpectedly - that calls for chocolate too, doesn't it?

Hey Betsy it's good news about the ER+ it gives you more treatment options. As to the double mx you should ask your surgeon. You can always have a single mx and a reduction in the other breast to match (which I was offered but didn't take up). I had a mx on one side and recon using back muscle. I'm only slightly lopsided and you can't tell in a t shirt. I had all my treatment on NHS and was very impressed with it all - except the food! Mind you, I wasn't really hungry post op anyway.
Welcome lilymaid hopefully it will turn out to be nothing - but we're here if you need us.
malt I got some pretty big splash about seromas on my back that were drained a few times over a month or so, but they were where my back muscle was removed. I had none on my front. My father reckons its from dissection (nice!) of the human body ......
Hello everyone else - which this crap weather would bugger off

jchocchip
Large bar of chocolate purchased immediately after the hospital trip today - for consumption this evening. (Also bought lots of lovely fruit as well for balance).
I have definitely found the right thread!

Hi Lily and welcome - hopefully you won't have to join the club, but if you do we have a vast range of experience and treatments between us, so someone will always be able to help with any questions I'm sorry your DS has also been unwell, good for him for doing camp America - I hope he has a brilliant time, - am sure he will (sounds as if you have adventurous boys of your other DS is 9k away).
It must be tough to be on your own atm - so do keep posting and chatting if you need a bit of company over the weekend. xx

for Ruby - oncologists letters always make me feel shitty too - I think its the medical terminology and matter of factness about something that has had such an enormous impact on your life. I am a great believer in statistics and percentages being somewhat irrelevant, if you had a 2% chance of recurrence the figures would be meaningless to you if you happened to be in the 2%. Same with your 'figures' - 60% chance of recurrance, is 40% chance of non recurrance. And 40% is a big old percentage - if it was an exam, you'd pass

betsy - good news about the node (hooray) and the ER+ status, - you always sound very organise and together when it comes to asking the medics questions, so am sure you have got the info you need - chemo regime is partly to do with what is your hospital's norm I think, as many of the chemos do pretty much the same job. I had FEC and CMF so if you have either of those I'm happy to answer anything about them as best I can (although my chemo addled brain means my memory of it all is fairly shit )

Although its absolute crap that you new ladies are having to deal with this, -I am glad that there are several of you at the same sort of stage together - I think it's really helpful to have that kind of support, and just to be soppy for a moment - you are all lovely women and we are rooting for you all

My art day has been cancelled as the chap running it has a chest infection. So I may well go to a garden party/fete being held at a local cancer support centre I go to instead. Hope everyone else has a good weekend

waving to jchoc and kitkat (reading your two nicknames makes me want some chocolate now )

Yes I'm inclined to agree Kurri especially as I got the numbers the wrong way round, it's 40% chance of recurrence. So even less! Grr at oncologists and their miserable language :)

Fresh pasta for dinner here, one of my faves what's everyone else having?

Betsy, that's a pretty nifty set of results. You will be pleased to hear that having several lumps in one breast doesn't make a bit of difference to your splendid chances of survival.

Lily, welcome! Sad you're here, but these are fine people to share things with whilst waiting. And since you're here, be reassured that only 1 in every 100 women who turn up here will find that they a) have breast cancer and b) find it's so rudely behaved that they cop it. A few will find it's a blinking nuisance that has to be managed long-term, though. The rest will find modern treatment stuff works. Not in a fun way, but it's doable. Have a . I am.

It was pizza here for tea. Yum.

pizza !
Just had 2 gin and tonics with parents- our Friday regular appointment.
Going to look at a nice garden tomorrow (Open gardens weekend) -it's my editor's parents house and it's totally lovely and they have lurchers,so will be very excited.

Evening all

Hope everyone is bearing up OK this evening

smee when you home? Glad to hear all went OK. Rest up, won't you?

Lily welcome, but sorry, iyswim. Chocolate is most definitely the answer for most situations, particularly ones involving scary stuff. We have a virtual snack trolley though, so its good form to share. . . Hang out with us, we've seen it all x x x

betsy a plan is good, now you know what you are dealing with. Clear nodes is A GOOD THING. Hang in there, lovely x x

MAS you know you'll be even more tempted to get a dog, don't you?! Hope you have a lovely time x x x

ruby we had yummy nachos at the pub and I've just had some cheese and crackers. Sort of eat what you like evening in our house. DS ate loads, which is a pleasant change - pizza, chips, ice cream and grapes and jelly when we got home he is well known for random mixtures when given a free reign to eat what he fancies! having here too. Sorry you found the letter - like Kurri said, statistics mean bugger all if you're in the 40% or 10% or 1 % or whatever. Thinking of you x x x

gig what news, my lovely? How are you feeling today?

malt I reckon leave seroma if its not bothering you. FGood that you can go to the clinic if you need to. Thinking of you lots at the moment x x x

Going to London Town this weekend to visit my brother, with DS. Quite looking forward to it

Am sure I have missed loads - sending loads of love and hugs to everyone xx x x x x x

Wow! It has been busy on here today.

Welcome Lily, hope it is a short visit. You are very strong to deal with this on your own.

Betsy, I am sorry to hear that you will loose your breast. I know how you feel about wanting to get rid of both though. I will never trust my remaining breast as the other one proved so traitorous. My surgeon wouldn't do a double mx at the time, so I just have to glare at it suspiciously.

I am declaring today insomniacs day I can't get back to sleep. I've tried reading, listening to music, sorting laundry to start when the others get up. It's not working!!!

I won't even attempt to lie down for half an hour, who knows

Happy insomniac s day Emin. I woke up and still had an incurable disease. Fuck.

It does make looking on the bright side a sissiphean struggle.