Tamoxifen - advice please !

[MargaretMountford]

Am going to be starting Tamoxifen shortly, was just wondering whether anyone else is on it and can tell me what it's like ! thanks !

Hi Margaret

No idea - but wanted to join in because I'll shortly be in the same boat! Hope someone comes along with more info!

hello Cakesandale ! my SIL is on it but she's away..I have told my consultant I wanted to think about it a bit,not being difficult, just cautious ! How are you doing ?

Well I have jumped the gun a bit posting here, really - i have a course of chemo to undergo before I get to the Tamoxifen bit. I was doing pretty well really, (thanks for asking) until I started scaring myself with the side effects of chemo.

I know what you mean about wanting to think about these things a bit - all the lymph nodes I had taken (and there were 17 of them - yikes! are there any left??) were clear, but there was a tiny bit of evidence of more cells near to the original lump, so I have been advised to have chemo as an insurance policy. So it is not cut and dried that I need it, but I want to see my daughter grow up, so I am just going along with it as a safety net.

it is all a bit gulp-making though, isn't it?

And I am going to have no hair!!!! Aaargh!! I have told my daughter this morning. She is 5. She said 'Oh, my beautiful Mummy is going to be bald Mummy. I don't want it to happen.'

Bless.

Hi again Margaret

I have heard that Tamoxifen is not too bad over the long-term, most of the side effects being early on.

Is there anything specific that you are worried about?

hello again Cakesandale - am so sorry that you have to have the chemo - I am luckily escaping that.My SIL had it and lost her hair but she looked pretty fab in scarves- it will grow back too but that's probably not very consoling right now.
I was diagnosed with DCIS and invasive carcinoma at the end of April and had surgery last Monday plus sentinel node biopsy,so only a few lymph nodes taken out -they were clear so it's just radiotherapy and tamoxifen for me. I've rung the hospital and left a message to say I would like to try it as after a bit of reading and thinking I feel it is the most sensible option - I just wanted to think about whether there might be alternatives,but don't think there are. Post-menopausal women have other choices,but I'm not there yet ! I suppose I just don't want to feel not myself and become a menopausal harridan ..and on a purely vain note I really don't want to put on weight !! but I do have my family and ds to think of and of course not everyone has side effects.

Hi MM

You are right, it IS the most sensible option. And I read an interivew with a woman in the May issue of Red magazine - she was 41, had breast cancer 5 years ago, followed by chemo AND tamoxifen. She looked terrific and, with exercise, had actually lost weight. So it is not inevitable that you will put it on.

I have been firghtening myself witless today about the chemo - so am now giving myself a talking to......

yes, I'm being silly- but I suppose I was trying to find out all the options first..anyway, have decided to go for it ! Try not to scare yourself too much - my SIL came through it,it was hard but she is doing brilliantly now - she posted on here (lalaa) during her treatment if you wanted to check the archives - am sure she'd be good source of comfort and advice if you wanted -she has helped me a lot in the past few weeks..it's all been so quick,that's the thing that has made my head spin a bit...mammogram,then biosp,diagnosis,surgery and now ! all in about a month !

Hi MM

Thanks very much, I think I will check out her posts in the archive, that's a good thought.

You do feel like your backside hasn't touched down in weeks, don't you? Still, it's top level service, I suppose, and for that we are all grateful. I only got my diagnosis by fluke - had gone to the doctor who could find nothing wrong, then got called in to the mobile breast screening unit on a pilot scheme to check younger than usual women. Otherwise I'd still be undiagnosed.

I am going to get my hair cut really short so the falling out bit will be a bit less hard to handle. And I must learn how to tie scarves with aplomb....

Really, really good luck with the Tamoxifen, post and let me know how you get on. We can all be raging menopausal old bats together!

I have nothing but huge admiration for the breast unit at my hospital - so efficient and also so kind and nice !
SIL cut her hair very short too - seems sensible and perhaps less distressing than having large bits falling out if it's shorter..really hope it all goes well for you xxx

cakesandale- this might be useful, SIL is on here too
here

Hi Margaret M

A big, big thanks for this, will take a good look.

Our breast unit have been fantastic as well. And all the other people I met briefly along the way - theatre nurses, ladies with tea trollies - compassionate, humane people, every one of them. I feel very lucky to have met them all.

Am feeling a bit more positive today, as you can probably tell!

Do keep up the intention to get the Tamoxifen - your family want you with them, and you deserve to be with them too. That's what it is all about, really.

Good luck!

hi i was on tamoxifen for a short time (until they found other probs ) i found that the first few weeks were horrible (just telling the truth!) I was constantly tired, ratty and generally not a nice person to be around (bit like my menopausal MIL )

Hot flushes, night sweats and insomnia hit me quite badly but after a while you just sort of get used to it- someone bought me a chillow which was heaven! also ky jelly came in handy- and not just in the bedroom, i got very dry bits and found that the ky stopped any irritation- oh and cotton knickers!

Good luck- once the initial symptoms subside you can feel 'back to normal' tamoxifen is very effective.

thanks abermum - that is helpful ! hope all is well with you now.
Cakesandale - have been in touch with breast care nurse to tell her that I've decided to give Tamoxifen a go - the right decision I think..it's just having to think of it all at once !
I was sent to recover on the gynae ward after my surgery which was very nice as it's modern and small,only six beds..the general surgical ward frightened me as it was full of ill people ! Anyway, absolutely everyone there was lovely and kind too. Have driven my car for the first time and was ok,so am planning to take ds and my mum out for an outing this afternoon. Glad you are feeling more positive x

There you go MM! It's just a crappy first few weeks! Phew! (Does sound a bit horrid tho')

As soon as you get back into that car,it is a great feeling, isn't it? Getting back to normal stuff makes you feel soooo much better.

I have just been to the hairdresser's (last normal haircut for a while). Turns out one of the women there is on chemo for something else and she has not lost her hair but she was so lovely. Never met her before but she gave me a hug, kissed me and offered to say a prayer for me. Now either she is VERY sweet, or chemo is VERY bad, or possibly it is both. Either way, I nearly cried. had to get out double quick!!!

But I am honestly alright about the whole thing now.

Keep strong, and enjoy your afternoon out!

chemo- it is sooooo different for everyone and everyone has a coping mechanism!

Just to warn you- before chemo i had wavy dark chestnuty hair- after poker straight darkish blonde sounds great but i looked like a bog brush for MONTHS!!!

it can totally change and sometimes people get an afro for a while because the follicles have forgotten how do it!

You may find a chemo buddy useful- i have my sessions specially arranged to co-incide with another young woman (diff cancer) and we became firm friends- it helped that we could talk during sessions and could ring each other in between and it always felt like there was someone going through it with you and they knew how you felt.

To this day my family (even DH) do not know some of the dark thoughts i had during the time i was first receiving treatment- my coping mechanism was "oh, yes i'm fine, its only a bit of chemo" but inside i felt physically and mentally on the edge. i confided some of this to my fantastic mac support worker and she told me it was totally normal but arranged for me to see a counsellor who specialised in oncology cases.

i'm now nearly a year on from the start of my first chemo sessions and have been through some tough times but knowing that there is a reason for all the shit makes putting up with it somewhat easier- looking at my kids when they are asleep always brings me to tears- they are what gives me a reason to say yes to all the nasty treatment and they are what makes me realise what the end goal is, to see them grow up and lead their own independent lives- only then will i ever give in to cancer, in the meantime it can throw what it likes at me!

that is a great post abermum - thank you ! I am so lucky to have escaped chemo,that's for sure. My SILs hair grew back differently at first, much wavier, but is now long and lovely as before. Ended up at cinema seeing Coraline as the gardens we wanted to visit were closed, but nice afternoon anyway !

Abermum, thank you, that was a very interesting and generous post. I will think carefully about what you said, and hopefully be a bit more prepared. And I am almost heartened about the hair thing now - mine has always been a bit crap. maybe it'll come out better next time!

Thank God for family and friends - they are what we will go through it for, and also what helps us to get there.

Stay strong Abermum and MM, and I'll try to do the same.

my last post may have been a bit doom and gloom, sorry!!- but hopefully if you ever feel down it will help to know that it happens to everyone!

Can i just say that if you don't already have one- ask for a referral to a Macmillan support worker/ nurse depending on your case- they are fabulous people and the work they do is invaluable.

My Mac nurse is specially trained to deal with younger women with children- she not only has to deal with my irrational outbursts she puts dh's mind at rest and has arranged for the kids to go and do activities etc (ds's went rock climbing!!) they are also great at arranging wigs/ head-coverings and the advice they have given to me has been second to none. Katie even comes to all consultant appt with me as i glaze over and not a word goes in so she comes, takes notes then the day after comes to visit and goes through what the cons said [brain like a sieve] if you ever need any info or just want to chat (chatting with a stranger online can be very cathartic!) i can be found- i do often lurk rather than post but you can cat me anytime

stay strong ladies, once you are on the 'journey' you will meet some extraordinary people. x

thanks abermum - you are a star ! you and cakesandale seem to have more to contend with than me, I feel a bit of a lightweight !

anyone who has to visit an oncology department is going through an ordeal regardless- usually its the worry rather than the actual illness.

good luck with the tamoxifen- lots of hot chiocolate and early nights and not too much wine x

I am going to add you both to my list of terrific people I have already met at the start of my journey, thanks to you both.

And - abermum - I may well be in touch, thank you so much for the offer. Now all I need to do is find out how to cat people!

You are quite right, it is the visit to the oncology dept that is so off putting. I find it amazing how fast you can get used to ANYTHING! A few weeks ago I was terrified sitting in the surgery outpatients dept waiting for test results, etc - then I had to go to oncology, where I felt REALLY anxious. A couple of days later I was back at the surgery outpatients waiting to have some fluid drained off (yuk) and it almost felt like home. Turns out that the knife wielders are not so scary after all.

Feeling lots more positive today and planning to stay that way by avoiding all the leaflets they give you.

As always, I also have to work (I do this from home so it is a bit easier for me), so I'll get on with a bit. God knows how the clients will react to a bald PR consultant - we shall see.....

Abermum it does sound like you have been through the mill a bit. Thank you for your honesty, and I am sending both you and MM lots of positive vibes, prayers and hopes for continuing positive progress. xxx

aww, thanks Cakesandale ! I have got quite used to taking my top off now - blase almost ! I hope we can keep in touch through this anyway. I work from home too as a freelance illustrator - it makes things like appointments easier,as long as I'm back in time for ds coming home from school or can arrange for him to go straight to my parents (who luckily moved to the house backing on to mine six months ago - am so grateful for that too).
Stay away from internet and leaflets for a bit - I read and looked up so much last week my head was spinning !

Yes, more people in this city have seen my boobs than haven't! And none of them has more than a professional interest (bahhh!).

It sure does help being at home - i did some work as soon as I got out of hosiptal following my second operation (the nodes one). Mind you, the district nurse tore me off a strip. But it definitely makes life easier.

It's good to know that you are here to talk to - let me know how you are getting on. I am sure the Tamoxifen will be fine when you get accustomed to it. And as for chemo for me - well, even if it is really crappy, it is only for a relatively short period, and there is a good reason for going through it.
And I might even end up with better hair than I have now, if Abermum's experience is anything to go by.