TAMOXIFEN -the third thread ***

[MaryAnnSingleton]

here we are- will put a link on the old thread.

BTW KK yes the right team did win!

Have eaten too much curry

SR - just painful they went through the same wound as my mastectomy, I healed much quicker than for the first op. - Had a drain for a few days, but was only in overnight. I hope it all goes well for you, and you don't have the same probs. as last time- I'm sure you won't - I imagine they'll be very alert to infection, after what you went through before.

RWU - I'm glad the Macmillan visit was helpful for you. Trampoline sounds good fun and a bargain!

SR - I've also had the axillary clearance and echo what KK said. Don't worry. The drain is the worst bit, especially if you have it in for a few days, not painful, just a bit icky.

Thanks Cakes and KK.

You can tell I'm in pre-op mode as I have spent the morning clearing out a huge cupboard and cleaning the cooker

I had bought some of those little stacking shelves from Lakeland - with these and big throwing out session, cupboard looks great. Cooker is 17 years old so nothing will make it look much good but it is shining - in parts!

RWU - Pennies - Ebbie - BB - how are you all today?

MAS - I think I'm the oldest! Well I'm used to it. Shop assistants used to ask me sometimes if my grandson was behaving - it was my son! Bloody cheek.

SR - I took dd out for dinner one night when I was mid chemo - scarf, few eyelashes or eyebrows... heard two elderly ladies saying "Oh look she's out for tea with her gran" and it did NOT make me feel more at ease with the way I looked. ratbags!

And as for the clearing out - on the one hand, steady on!!!! On the other, all that motion will help with the lymphatic drainage no end

Good luck with the clearance, it'll be fine.

I so don't want to be here, but sadly me too. Recently diagnosed with invasive dc with spread to lymph nodes (am not sure yet how many). Have to have mastectomy in a week or two weeks time when they'll also check / take at least some of the nodes, then chemo and probably rads too, though the Consultant said I might not need them. So a big Easter Yippee for me- though somehow even chocolate doesn't help..

Have a question for you wise women though, as am meeting the BCN tomorrow to talk about reconstruction or not when they do the mastectomy - the surgeon's suggesting offering a simple implant for now and am inclined to think some shape psychologically is better than none, but if anyone out there has any wisdom I'd love to hear from you.

Thanks for all being so down to earth on here. I read through and thought, well if you can all be like that then maybe I can be too. Really wish none of us were here at all though.

Oh Smee, I am sorry. We none of us wanted to be here, but now we are, it is not necessarily so bad.

I can't answer on the reconstruction thing as I only had a lumpectomy, someone will be along in a bit with some views on that. But I had the chemo and the rads and came out the other end, and I am not brave so I am betting you will find your own way to cope as well.

It's a long old process, arduous in places, boring in others, but because of that, life goes on much as before. And we are all here with some advice and also a lot of inconsequential old rubbish, so we can help you a bit as well.

So - sorry you are here, but you are very welcome. Dive on in. Practical advice will follow shortly.........

Hi Smee, so sorry you've had to join us.

I had a mastectomy (both sides) and I've opted for delayed reconstruction on the advice of both my surgeon and oncologist because they said that implants can be affected by the radiotherapy. I have also met a woman who experienced this and she says her implant is now quite solid as a result of it.

I hate how I look right now and what with the chemo hair loss, and generally feeling crap because of the chemo too I'm not feeling very good about myself, but I'm guessing that will all right itself once I've finished this chemo.

. Feeling properly wiped out by this round, and a bit down too. BCN has recommended champagne!! Meeting the girls in the pub later so will try her medicine!

Thanks Sandripples and Pennies - really nice to know you're out there.

Cakes I already feel like it's a long ol'process and I've known for less than two weeks!

Pennies, my Surgeon warned me about the hardening too. She said 50% of women get it after Rads, but that if I do have to have Rads and it happens she'll just take out the old implant and put in a new one, or at that point I can choose more detailed reconstruction. She made it all sound so easy....

Really sorry you're feeling so lousy, but am relieved to hear you're still contemplating going to the pub. Any idea life will still be viable is what's keeping me going. + Champagne sounds like great advice. DH and me drank two bottles the day I was diagnosed - we said we'd drink a bottle regardless of which way the news went. I felt lousy next day, but it still felt like the right thing to do.

I have no idea why I said thank you to you Sandripples. I meant Cakes. Am obviously more addled than I thought.

I'm so sorry Smee - I saw your name on the other thread and had wondered how you were, you must still be in shock over your diagnosis.

At your stage, I felt as if I was in freefall but found that once surgery and treatment started, I began to feel things were a bit more under control. It can be a bit daunting at first, but it is doable, a step at a time.

As for reconstruction, - I would say have a think about what your concerns and worries are either way, and note them down. Then have a good long chat with your BCN, to work out what is right for you. I had a mastectomy without reconstruction , but 21 months on, I'm now considering having a reconstruction done.

It might sound strange, but you have to make various decisions along the way, and there always seems to be pros and cons. Sometimes just getting the decision out of the way makes you feel more settled, whichever way you decide.

Anyway although no one wants to be in this club, you are of course very welcome, moaning always allowed (in fact positively encouraged) - this thread has been a great help to me, I hope it helps you too.

Sorry you're feeling yukky Pennies, champagne sounds like a good idea, have a nice evening out.

SR - I know what you mean about the pre-op activity surge, - but don't overdo it

Pennies and Smee - alcohol will help you keep going. Champagne is double points. Good on you!

Smee - hello and welcome but so sorry it's because of bc - I was worried about you on the other thread but am glad you found us here...

Hi and welcome Smee from me too. I have only had lumpectomy so can't comment on your specific question. But (boasting) I have had other things which you might find useful in future! For now, I'm in chemo (only 2/8 of the way through - it does seem sssssoooooo long) and having a 'break' from it next week to have axilarry clearance. What a great short break eh? Would have preferred a weekend in Paris but that'll have to be at the of all this.

This is world non of us wanted to join, but once you're here you manage to cope somehow. This thread is really supportive and the best advice I have had was from a friend who had BC 3 years ago, she simply said 'the ability not to panic is a great asset.' Its hard in the first couple of weeks when you are reeling in shock but you'll find it does get easier. Have a good cry when you need to. That helps too.

Personally I have totally given up alcohol since Jan 24th when I had a bad reaction to an extremely small glass of sherry. Its easy as I don't feel tempted and my liver's having a ball Except when having to cope -along with all other organs- with the weedkillerrchemotherapy drugs.

For some reason my DH decided to restock our wine cupboard (mean or what?) recently, which is partly why I've had to clear out our cupboard as he removed a lot of my valuable stocks of stuff clutter. I have explained that some of the wine is reserved for me for October.

Had a lovely long walk this afternoon, a bit off my usual beaten track. (Smee - do activities which make you feel good )

Hugs to everyone, esp Pennies feeling weak today. Hope tomorrow will be better. I've taken a bit longer to come back up this time but feel ok today.

kurrikurri I really hope you're right and this results stage is the worst. Feel a bit better now that treatment plans are slotting into place, but I just want to get on with it. Hate all this waiting. What you say about making decisions sounds spot on to me. All these ifs and buts are torture.

• hello again Mary Ann - you were very kind on the other thread, so it was no surprise to find you here. Sorry I didn't get back and post there, but I sank a bit. Not surprising really.

Cakes am mighty glad I get double points, but am disturbed by sandripples abstinence. Have never been a great drinker, but the thought I might not even want a drink to drown my treatment sorrows is a sobering thought..

Still sandripples, good on you for giving your liver a rest. And that's all excellent advice, though I have to say 'the ability not to panic' is proving elusive for now. Really sorry you're having axillary clearance - last thing you need amidst chemo, though it sounds like it's a wise move, so best to get through it I suppose. I'm hoping to avoid having two operations, as I'm guessing they'll probably take all mine with the mastectomy. It's been scary knowing straight away that the lymph nodes were affected (2 showed up as enlarged under ultrasound), but good too in as they instantly asked if I wanted to have bone scan/ CT scans, so I already know those are clear. Knowing the cancer hadn't spread was an incredible boost, so from now on everything seems more positive - though I know it's going to be one hell of a slog.

Thanks to all for posting me a welcome then and so fast too!

Welcome smee! Sorry you have to join the club! But we are a friendly bunch and we do have some laughs over here in this lovely corner of mn.
I'm posting from my iPod so I'll keep it brief, I think the others have given some good advice, I have had a mx and dodgy reconstruction but my bc was eventually found to be secondary so asthetics weren't high on the agenda, but after LOTS of rads my implants are ok, bit lumpy but always have been iyswim- rl friends who don't know what surgery I've had haven't ever noticed (or have been very discreet!)

THANK YOU,THANK YOU THANK YOU,ALL so MUCH for your storys,can't remember them but when have ink am going to print them out so i can talk to you and know who i am talking about{i could blame it on the tam,but am a blonde by heart}..
Am so sorry to hear just how much you have all been thru,makes me realise that i need to slow things down a little bit and take better care of myself..including earlier nites...

Pennies,I work on thursday but do get lunch from 11.45 til 1.15pm if that helps,but i really dont think u should worry about me when you are going thru so much yourself..

Found out a little more today,got an appointment in pencil for may to see my consultant,also know that a doctor will need to go thru my notes with me so have booked a double appointment for next tues{pls remind me},to go over a few things again mainly to rule out the unknown..

What tests would i need to ask for?

Need my platelet count checked,cancer gene,and demilitus test{is there one},maybe lupus too as have just been given a leafet by nurse whilst had a pointless blood test..

I went 2 yrs to see a nurse as nipple went all indented and was told it was ok,when i went for my smear in jan,asked the nurse to check my lump and was told they are no longer able to do this...

I know that i will have to have lumptestamy but with b.c high from my fathers side am i crazy to have it all removed even if its not cancerous{am not so sure that it isn't now thou}.

Has anyone had a hystorectumy,etc out?Have had gyno probs for yearssssssss,so if am going to have to stay on this treatment should i go with my gut feelings?Am only just 28 but want to live and enjoy my children am sick of being in pain and putting on a brave face{i too just get on with it..}..

So sorry that there is another newbie,but also glad you have joined us,pls keep posting and will try and help u all as much as i can xx

I feel a little of every emotion,not so much down ore matter of fact but thats b c i am still in the unknown,am scared that when i know for real what i know now will just fall to pieces...is that normal do u think???

sorry for long post,promise to read more in detail asap,
keep smiling xxxxxx

Ebbie - feeling all sorts of emotions and reeling netween them is normal for a while. I'm glad you've got the appointment with the DR. Have you also got an appointment with a Macmillan or BC nurse? She woiuld help you work things out in terms of what tests to have and aty what point you'd have them.

If you only need a lumpectomy at this stage my personal view would be not to have mastectomy - at least until they have tested the lump and you get the result. You could find they have a 'clear margin' of tissue round the lump and no reason to remove any more. On the other hand if you have the family gene (which is quite rare I understand) you could opt for mastectomy. But you'd very much need to discuss all this with your consultant and BCN.

ALL WHO have had CHEMO - do you ever/did you ever get soreness in mid forearm - I have tenderness there eg when I stretch for somthing. I think its up from one of the veins the last nurse was digging around in for a while before giving up and using another at last chemo. Its only a tenderness but has anyone else had this 2 weeks after chemo? Just wonder if its inflamed...bit worrying before op next week. Will obviously ring nurse if gets any worse and will also talk to aneasthetist re general lack of usable veins.

Ebbie - you are dealing with so many unknowns at the moment, I hope the doc. is able to get things rolling with sorting things out for you, and you will have some answers soon.

The hospital will give you best advice about lumpectomy/mastectomy, once they have determined what the problem actually is, and your risk factors etc. Its something you need to discuss - do you have a breast care nurse at the moment? SR's advice is spot on,- they may not need to take everything. mastectomy isn't always because the lump is 'bigger' or 'worse in some way - it can be because of awkward positioning.

I had a hysterectomy in my 30's. But I'm not sure what current policy is on this (it was about 13 yrs ago), it may be that they try a more conservative approach if poss. especially considering your age. I don't really know, it obv. depends on the problem - do you have a gynae consultant appointment coming up so you can talk it through?

SR - I had a lot of pain in my chemo forearm - it all tightened up and felt very inflamed, I was advised painkillers and to rub ibruprofen gel into arm, but I'd get it checked if its v. painful in case it is an inflammation (phlebitis (sp?)). IIRC it was much worse when I was on epirubicin - it is a bugger for veins! My policy was always to ring up unit and ask 'is this normal for chemo?'.

I am at the moment - my sister is v.poorly, won't go into details on this thread but its here - (I asked for advice last night - was feeling pretty low about it all.)

Hope everyone is OK today - not feeling too grotty. Hope the shingles are clearing RWU and you are feeling a bit better and more mobile. How was the champagne evening Pennies?

KK thanks re veins.

I have a friend with the serious end of the spectrum of Crohns disease (It varies very much as you may know).

This friend has found a lot of support on specialist web sites. I'll ask her where to look for this and get back to you.

Sorry about your sister. Crohns can be horrid for quite long periods but my friend eventually had surgery and then had 4 extremely good years. She has had a recent bad flare though, so I know it ca be v. problematic.

hope you are all feeling a little cheerier on this sunny day (if it is sunny where you are). Am going to have to take notes again because I can't keep up with everyone's posts and I really hate to miss anyone off.
Just returned from my first mammo. after dx and it wasn't too uncomfortable -bit twingy now and yesterday in anticipation I had very achy arms and chest...suspect it's tiredness- felt really wiped out yesterday. Am seeing them in 2 weeks for check up.
Am unexpectedly being offered one to one CBT ! had quite convinced myself that they wouldn't. Still want to do the grief counselling as I believe it's the root of things and the psych. feels that the bc diagnosis is tied in. Result though

Result! MAS! And glad the mammogram wasn't too bad.

SR - ref the tight veins. I echo what KK said.I had tight veins for quite a few months, in fact it is only reading your post that i have now realised it has finally gone. It is the epirubicin I think, it can make the veins very hard indeed, but they do recover.

KK - I'll take a look at the link later as I am just dashing out, but sorry you and she are having a bad time.

Oh dear KK. Poor sis. Hope someone pops along knowing something helpful.

thanks Cakes
KK - so sorry that you have the worry of your sister's illness- had a quick look at the thread - must be horrid for her.

Thanks so much everyone - and for the bump Cakes although maybe op is very uncommon - I don't know - maybe the evening crowd will have info. (hopeful). She was distressed last night on the phone mainly through lack of info, from the hospital, - the whole thing was ghastly with an emergency dash to hosp. etc and in terrible pain.
She has been poorly for ages and lost so much weight. I'm hoping that at least this episode will see her on the road to getting proper long term treatment. Fingers crossed. We are very close, she's been wonderful all through my troubles. As she said - she is now an old crock like me

Have spent about the last two hours trying to order a plant arrangement for her - managed eventually. You would not believe how hard it was - apparently Scotland might as well be outer space if you want florist action.

great news on the CBT front MAS - I hope you find it helpful. And good mammogram not too sore