23rd **TAMOXIFEN** thread

[MaryAnnSingleton]

oh my !

paddy I'll hold your hand. I am new to this board too. Dx on Tues this week.
Sorry for your friends dd topsy

sparkle your little boy sounds so sweet.

Morning Ladies,

Thought I would update you on what's happening with me. Got a cancellation yesterday morning with Onc for new patient visit. wish DH was with me but had to be down there within 30mins. Not good for stress levels. Got there and couldn't even look at gold palque on wall saying Welcome to Cancer ward. I wanted to shout out that i didn't belong there. Saying that it was a nice place everyone very nice and some chatting and laughing. People were sitting round looking fine having chemo and after my app Con took me to get weighed and introduced me to lady with her cold cap on and she was really friendly. that bit is not so scary now.
plan of action is:
wait for biop results - have mri adn ct scan next week at Oxford. See consultant for results of what this f*ing thing is and start chemo within 3 weeks. she wants to do this first and she said almost certain mastectomy after. Is there a chance it will shrink and it may turn out I just have to have a lumpectomy?
Can anyone help with following?
Where do I start with looking at decent wigs? (not shiny naff ones!)
How bad is chemo? Is it just the tiredness and sickness that's bad?
Has anyone has success with the coldcap thing? is it worth it for what hair it does retain if any?

Why am I feeling ok this morning? Will I crash and burn next week?? weird...

Waves to all

sometimes have a lovely time !!!
kk there's a thing about The Highway Code on R4 right now...

Thanks MAS!

KK I think you are v brave to drive all 80 miles. Well done you!

Snoopy - couldn't walk away from your questions!

There is a chance that the lump could shrink and you would just need a lumpectomy, yes. Chemo can shrink lumps a LOT, I think someone on here had a lump shrink so much they had to put a marker into her so they knew where to watch in future. But don't pin all your hopes on that, just see how it goes.

As regards the wigs - there are free/subsidised ones available through NHS - the nurses will point you in the right direction. They are synthetic but they look very good: you will probably not need it for that long. The hair loss thing may seem like a huge thing now but, honestly, it's a few months for most people, and they fly by. In my case (all different, though) I needed something to cover my chrome dome for just over 5 months. I never wore my wig, just scarves, but it is a very personal choice.

On chemo - everyone is different. It is mainly tiredness and some sickness: how you were when you were pregnant usually gives some indication of how sick you are likely to feel. But there is shedloads they can and will do to minimise side effects. It is important to tell them stuff, not try to be brave.

Most of the side effects are cyclical - you do get to feel loads better between doses.

The main thing is to monitor your temperature, and tell them quickly if it goes up. Your immune system gets trashed so, if you get a bug, they deal with it, even if it is minor.

All in all, the chemo is a long hard road, but it is absolutely do-able. For me, I was terrified: but it was nowhere near as bad as I thought.

Cultivate your breast care nurse. She can make it all much, much easier. It's not a task you have to take on alone.

Thanks for all your kind words :)

They know it is some kind of very small cancer from what they removed last time...as it's cells rather than a tumour they were removing at the last excision they aren't confident they got it all yet which is why they're going back in...

Feel i bit of a fraud really even saying it's breast cancer when reading and hearing about people who are enduring chemo...the doctor doesn't seem especially worried as he mentioned Stage 0 .... the lady in the next bed to me had gone to the hosp with a lump on the Monday and was having a mastectomy by the Thursday so they really must move rapidly when they suspect a higher grade!

I'm ok about it most of the time...had convinced myself pre-biopsy that it was gonna come back as stage 4 high grade 6 months to live type...so insane as it sounds i do feel fairly positive apart from odd times when i let my mind wander

Because of my mums history and this latest brush with the big C i am considering preventative surgery with reconstruction....has anyone had a mastectomy with reconstruction?

Thanks again for your support!

Paddy - don't feel a fraud, we have all had different degrees of this, and we have all been absolutely terrified. It's normal.

Ref your question - not me. Just a lumpectomy and node clearance here. Three years ago now - blimey! But if it is going to help you feel more confident, it could well be worth considering. I think they'd want a bit of persuading, but it is an option.

Topsy - so sorry about your friend's dd, will be thinking of her and sending positive vibes their way.

Gig and sometimes - hope you enjoy your weekend away.

Snoopy - can't answer your questions, but will be interested in what the others have to say about chemo because I'm very worried about it.

Paddy - welcome, but sorry you needed to find us. I'm still new to all this, but will help with anything I can.

Am back!! Too spaced and dribbly to post anything sane. Had to discharge myself a bit before they were ready, due to ds school calling as he was ill and Dh in a meeting until lunch,so hurtled to school, now we're back but I have to send a work e-mail by 2pm.they don't know about op so need to try and be coherent.. Then need to to trek back to hospital to see bcn and pick up drugs. All a bit insane, but op ok. Will be on sofa later to catch up. Hope everyone's ok xx

Goodness I have a busy couple of days and you're already a quarter of a way through a new thread!

Snoopy I have probably had the most success with the cold cap - people who didn't know I was having chemo had no idea. Hair thinned a lot, but evenly with no bald patches. But then I really 'went for it' and used to press the cap down onto my scalp as it was freezing to make sure it froze into the right shape . No idea if this is what helped, just made sense to me. I have to say it was painful, uncomfortable, made me feel a bit dizzy. Used to take 1000mg paracetamol half an hour before. It also adds about 2 hours onto each chemo session what with prepping hair, freezing, thawing, etc. Nothing you can do to stop losing eyebrows/eyelashes though...

Gig Big warm hugs to you. Hope you have a very restful weekend in France x. (stinky cheese for me too please!)

Sparkle your darling boy is, well, a darling!

Kurri do you know of any yoga nidras like that available to buy? I bought one but it was all about focusing on the breath - quite relaxing, but I was looking for something like my fab yoga teacher used to do (in 1986!) - talking you through relaxing from your hair follicles down to your toenails!

Smee hope you and your perky boobies are doing well and tucked up relaxing x

Ha! Cross-posted with mad Smee! We'll be round with the duct tape you know...

Smee - welcome back! Glad op went well, but please take things easy!!

Smeeeeee you're back. try and take it easy - or what lime said! :)

smee that's the painkillers talking So try and take it easy. Try and take it easy or I will be round with lj.

Thanks ladies, just been down for another 3 biopsies, my poor boob can't take much more. MRI is booked for next wed so things moving quick. Can't help thinking it's moving quick cos it's more urgent iykwim.

sometimes thanks I was thinking it can't be any worse than when pregnant with DS as was on sofa heaving breathing trying not to be sick for 6 months and onwards! wonder how well the anti sickness drugs work?

Oh btw Christchurch is lovely! We normally go camping and plan to go there soon just outside Christchurch in Branscombe. Lovely beaches , hope sun comes out for you.

gig enjoy france and have a big fat glass of red for me.

lime Sounds like it worked ok for you. does sound painful though. I was thinking if it's going to get so thin and just be wispy then I was wondering if it was worth it. Spose it works differently for different peolple.

Welcome back, Smee. Blimey though, take it easy

Snoopy - ah, a person with serious morning sickness Make sure you tell 'em. My onc believed in giving LOTS of anti sickness stuff (the other one at our place started everyone off with far less) and I was honestly just a bit nauseated from time to time, was never actually sick. Other people fared less well. But the thing is, they start you off with fairly standard stuff, which works for most - there is lots more up their sleeve if you need it. But they won't know unless you say. I'd tell them you expect to be sick - and why - before you start. Remember though, the fear of it is usually worse than the reality.

And now I really must away. Thanks for the beach recommendation

Smee - come on now girl what do you think you are doing....get back on that sofa, can't dh go back to hospital to get the drugs for you later?

LJ is getting ready to come and sort you out.

paddy, you asked about preventative mx and recon, I'm sure when smee sobers up after her anaesthetic she will tell you about hers... I haven't done the whole works myself, just a lumpectomy and radiotheraphy. Don't feel a fraud, even an early bc is cause for a major wobble and rethink. I'm still hanging around here 8 months on from my op, I really think it helps to have somewhere to vent my worries rather than burden rl friends. And virtual chocolate has fewer calories :)

Hello all, - I've missed Gig heading off for France, but am waving bon voyage from afar.

Smee - welcome back, take it easy or we will send the heavy mob round to duct tape you to the sofa. FBS and more + DVD's and books and a little bell to ring so people can wait on you

Paddy - welcome, waiting fro results is the pits so I hope we can support you through that. There a several ladies on here who have had DCIS, so they will be able to give appropriate advice on that particular DX. - Don't consider yourself a fraud, some DX's require less treatment (hooray, that's a good thing) - but they all have their different challenges, and associated anxieties, - so you are as entitled to feel as fed up, tearful, angry or whatever as anyone else.

A cancer Dx is a big scary thing, and people telling you you have a 'good' one isn't necessarily what you want to hear if you are feeling overwhelmed by it all, - no cancer is the best kind! -So go with your feelings, and we'll all keep fingers crossed that you don't need too much treatment

Snoopygirl and OneStep - regarding chemo, - everyone reacts differently, there are lots of possible side effects, but you are unlikely to get all of them, the main thing is to tell your onc. or chemo nurse about them, - ring your unit between treatments if necessary and they can sort out something to help you - most of the S/E's can be well controlled. The main problem I had was fatigue - extreme tiredness that won't go away - but I was on a trial and had my chemo doses every 2 weeks instead of every 3, so I may have been more affected by this than the norm.

I didn't have success with the cold cap (I think that was because I've got a small head, and the cap was too big), but as Limejelly says it worked well for her, and my SIL had a good result using it and hardly lost any hair. - So definitely worth a go. If it's not going to work you will know after a couple of sessions, so you can just stop.

Hello Lime - I've never used a bought tape for Yoga Nidra, so I don't know much about them. My teacher makes her own CD's and sells them (for about £7 IIRC) - if you want me to I could ask her for one. But if you like I'll have a go at copying the one I've got, and I'll send you a copy (can't guarantee it will work, as I'm not sure how to do it.)

waving to everyone else, have a good holiday Sometimes, if you see a very mad old lady trundling about with a wheelbasket and stick, while in Dorset, - that will be my mum

Your DS is a lovely, lovely boy Sparkle, I'm glad he's home now.

Will light a candle for your friend's DD topsy - I hope everything goes well for her, poor wee girl.

Oh I meant to say, went to see my lovely GP this morning - after last week's debacle with the endocrinologist.

he said my thyroid is Ok atm, but he is going to test it very regularly to check it stays balanced. He thought the skin peeling off my hands is due to exczema, so has given me some cream for that.

He was very supportive about me having the reconstruction, and said 'we'll have to do all we can to help you get the weight off' (nice man) SO he's given me some giant neon pink horse pills which make you feel full so you don't eat too much. And he's getting me to come in every 2 - 4 weeks to be weighed by the nurse to help me keep on track and to give on going advice . He talked all a bout my diet and what to avoid, what to eat etc. And to drink plenty of water (and have a glass half an hour before your meal to make you feel full).

So feel much more cheerful about things now.

Oh and I had to wait a while for my appointment and got chatting to an old man in the waiting room, - he turned out to be a retired driving instructor, so he tested me on my Highway Code while we waited

Smee - glad your op went well - doesn't sound like your doing much resting - can see sticky tape will be needed!

Welcome Paddy - sorry you have found yourself here. I haven't had a reconstruction yet but there are others here who have already gone through it who will be able to advise you.

Snoopy - I am three-quarters through chemo. Can't wait for end but it has been doable and not as bad as I expected. Found the epirubicin the worst as had quite a bit of sickness on that especially on first cycle but then they gave me stronger anti-nausea tablets which helped a lot (Emend). With the docetaxol I have had little nausea just tiredness and achiness. I did give the cold cap a go - was absolutely fine wearing it (took paracetomal beforehand as others have suggested) but unfortunately still developed a bald patch so gave up using it after cycle three. The key I think is to make sure the cap has as much contact with your scalp as possible. I have been using a NHS wig - it is fine - a couple of people have even complimented me on my new haircut so can't be that bad. Having said that I am looking forward to a ceremonial burning of it in a few months time!

Gig - have a great time in France and Sometimes in Dorset.

Waves to everyone else. Got to pick up kids from school residential now - hope it has gone well.

waves joyfully to smee - do rest and try not to work (much) !
Lime I have body scan cds from my Mindfulness course-these talk you through your entire body from toes to scalp - I can't remember ever really hearing the last bits as I always drift off -it's about 45 minutes long. I do have my breathing meditation exercises too which I use often - can copy for you if you'd like.
Paddy please don't feel a fraud,as kk says any cancer diagnosis is a shock and something to get your head round. some of us have had less treatment than others because of all kinds of reasons-age/whether or not it has spread to nodes/grade etc.

Right, am back with drugs a-plenty and no more work, so can sink into sofa. DH was desperate to go back to hospital for me, but I had to get the dressings changed, so he couldn't. He's trying to look after me, but am useless at sitting still. Will try and do better..

Am going to have a read through, but see there's yet another new person, so hello Paddy. I will read back and find out why you're here. Sorry you are, but nice to meet you iyswim.

smee glad operation went well. Please take it easy - perfect excuse for vegging on the sofa being fed grapes.

Hi paddy sorry you have found yourself here but stick with us the girls here are fab.

snoopy regarding the chemo I have had one session (7 more to go) and I had hyperemesis when pregnant so I prewarned them and they gave me 3 different anti-sickness meds - they are going to add another one in next session as although I wasn't actually sick I was just retching all the time. I was very tired but feeling more of less back to normal, ready for my next one on Wednesday. Just take each day as it comes and try not to re-empt the results as it will drive you mad.

topsy positive thoughts and prayers for your friend's child. Poor wee soul.

gigs have a fab time in France and sometimes enjoy your break too.

I'm having a wobble today. I never buy a paper but today I bought the local one and inside was a big story about a woman fighting to get a new drug for breast cancer. It stated "for many women with aggressive breast cancer who respond to herceptin the cancer comes back within a year". I have cried ever since because when I questioned my onc on my ER+ HER2+ result he said 'it just shows how aggressive it is' .

Bollocks. Can't keep up with everything. . . CSF injections, are, in my honestly held view, the work of the devil. Ache from ribs to ankles. Please, will someone tell me it gets better?

smee sit and stay put!! Resting - good, running around - bad. Got it?!

gig if you're online across the channel, hope the wine is flowing and you are taking some time for you and your family. Sending you lots of hugs x

sometimes will look out for you - not raining here, but v chilly!

Will try to read back a bit and get up to speed. . .

gracie stay away from papers esp daily mail kind. I bloody hate the word aggressive . Like any kind of cancer (or come to that virus or bacteria) is the kind of thing you welcome into your body with a cup of tea so to speak.

They know what you have and can treat it accordingly -please try and hold on to the positive facts .

How are you feeling smee? I am glad you got the dressings changed, so you start the holiday weekend all nice and fresh iyswim.

gracie - big hugs for your wobble,