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TAMOXIFEN -the third thread ***

740 replies

MaryAnnSingleton · 26/02/2010 10:40

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

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MaryAnnSingleton · 01/04/2010 14:35

thinking of you then wubbly x

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wubblybubbly · 01/04/2010 16:28

Thanks MaryAnn

Well I'm not sure how it's all gone, mostly good news I think.

No indication that it's inflammatory breast cancer, so invasive ductal. But it's grade 3, so that's not so good as I thought, although he seemed to think it wasn't a concern and the BCN said most of the younger women she sees are grade 3.

Good news (I think) is that it is hormone receptive, so tamoxifen after chemo and rads.

I'm a bit confused about the lymph glands. The consultant said about half were infected, when I asked the BCN she said he doesn't count them but then 4 out of 7 were infected and that it had sort of come out of the lymph node but not reached the next one

He said he'd had ladies with a similar diagnosis and he's still seeing them 10 years on - so I suppose that's good, still worrying though, I've got a 3 year old DS But not really good to think along those lines really (quick draft of Bachs...)

Anyway, should be getting my oncologist appointment soon and then chemo within about 6 weeks. At least I'll be able to take DS to his first birthday party in a couple of weeks with my own hair. Got to look on the bright side I suppose.

sandripples · 01/04/2010 18:01

Hello Wubbly, its a bit odd to think of these things in terms of good news sometimes, but yes my brother (a doctor) also described the fact that my cancer was hormone receptive as good news. Its because its gives us more troop to fight with, if I've understood correctly.

About half the saple of my lymph nodes were affected too, but I won't know about the rest till the clearance in a couple of weeks. (There is something odd about all this voacb isn't there! Clearance - sounds like clearing the jungle )

Anyway, sounds as though you'll be on similar track to me ie surgery, chemo, rads, Tamoxifen or similar. You will probably feel better to have a clearer plan soon. My mind stopped doing so many acrobatics once I'd got a clear plan, with dates. It seemed to take ages, but at least I'm on that track now.

A very close friend has been diagnosed with Follicular Lymphoma today, so she is at the start of a new and difficult time too. We could scarcely believe we'd be chemo-ing together but it appears likely. early days though, and she'll need more detailed diagnosis with grade etc.

Pennies - hope the day has gone OK?

MAS about the CBT.

RWU - hope you're gaining strength.
Love to everyone.

KurriKurri · 01/04/2010 20:15

Hi all - just back from hospital (after diverting via waitrose to get some soup for supper).

Sorry about the CBT MAS that is a pain - as you say it does seem unfair.

Wubbly - I think your news sounds encouraging,its very hard to take everything in when you are bombarded with information isn't it? With regard to the prosthesis i don't use my NHS one for swimming (although I think you can) because its a bit weighty. I've got a sort of bean filled one I swim in, which is a not a brilliant shape, but washes and dries easily. Tried a foam one, but it didn't like the chlorine!

Sorry to hear about your friend SR, best wishes to her.

The nurse I had today, made a total dog's breakfast of putting my canula in - I now have a very purple arm. She had several abortive attempts on the back of my hand ('Oh look you are sweating now' she said after she'd dug around for 5 mins.) Then she went for underside of my wrist ('This will be very painful, but the good news is you can scream if you want to' ) She was frankly barking - I'm going to avoid her next time!

Hope everyone else is feeling OK today, and Pennies chemo was not too bad. I'm off for an early night I think.

MaryAnnSingleton · 01/04/2010 22:00

oww about canula KK
Wubbly- agree that it is probably 'better' to have a hormone receptive cancer - though you probably don't feel that right now - tamoxifen really hasn't been at all bad for me so far,maybe I've been likely - I was scared about having to take it and seriously considered refusing it, hence this thread- but I do feel ok with it now.
Am very sorry to hear about your friend SR.
Am feeling better about the CBT thing,it might still happen but not maybe as I'd hoped -who knows it might work out better this way - the psychologist told me she'd most likely recommend my having counselling at Cruse in the first instance and I spoke to my lovely BCN and she felt that sounded sensible- it kind of put a better perspective on it for me-I'd felt quite wretched most of today.
Love to all and have a good Good Friday

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MaryAnnSingleton · 01/04/2010 22:01

likely ? I meant lucky

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sandripples · 01/04/2010 22:21

KK I REALLY sympathise about your cannula - I so hate them. Your nurse sounds hopeless - so sorry for you. [Strongly tempted to swear emoticon].

MAS - glad you're feeling a bit better.

My Easter biscuits came out v well and I had a nice time playing Bunny and taking them to friends who've been supporting me recently.

And my DD is OK, money has arrived.

So think I'll go to bed now!

sandripples · 01/04/2010 22:22

O wow, I just noticed these!

ebbie22 · 02/04/2010 02:05

Hey guys,THANK YOU all so much for your kind and very surported comments,is lovely to face up to things whilst on here...Thank you Pennies for your very helpful and true words..Went to sort out my notes and didnt get very far,it just seems no one is prepared to give me the time i need to help me...
Suppose to have full blood test and real scared that my body is shutting down on me,only to be told when picked up form that is a fating blood test,so now because of easter gotta wait til wed then another 7 to 10 days for results...arghh,i so feel like giving up but cant as i know now that my body is ill,not just with breast issues..
Am too scared to google cancer or why my body is slowly shutting down on me...
I hope you are all ok,memery is shot to pieces but i am trying to catch up and read how you all are,could you tell me a bit more about yoursels....

I am 28 just,2 young children,my very special angels.I had ovary and tube removed when 17,have been ill on and off for 7 yrs,but more so in last 4 and again in last 18 months with bleeding pain,sickness etc,does anyone knoow where i can turn to as still so scared that im letting the docts sit back and just wait and see...
Also what does it mean when the skin around the lump is too hard to test??

Have a lovely easter and hope to text u alll soon xx

ebbie22 · 02/04/2010 02:12

most write when am more with it,lol,if only there was more light hours in the day... xx

Pennies · 02/04/2010 07:03

Hi all. This is going to be a long one.

wubbly - Glad you got to meet with the dr and get some more information. From what I understand a diagnosis of IDC is a much more encouraging prognosis than Inflammatory BC. Also, oddly enough the more aggressive ones found in younger women (grade 3, like mine too) can be more treatable too, so that's also positive. Lastly, to have one that is hormone receptive is great because that gives you added armoury of tamoxifen and, if you're HER2+ (are you?, maybe your onc can tell you that) then you would also get Herceptin which I'm lead to believe is a fantastic drug.

SR - Are you back to feeling normal after no.2? Hope so. Those bickies sound fab, and I'm so glad your DD's money problem looks like it's getting sorted.

MAS - bummer re. the CBT. I am finding it invaluable. but as I'm shelling out for it myself I'm also finding it £££. I need counselling just for the cost! Have you seen any books out and about that could teach you the techniques? Maybe someone in the Mental Health topic may be able to recommend something?

RWU - How are you doing. So glad that you're home.

KK - Hope you're feeling more stable on the old pins! Ow ow ow re. the useless nurse.

ebbie22 - Oh, I am so worried for you. I wish there was something I could do to help you more. Where do you live? I'm in Herts and from a medical family and worked in a medically related field so I've seen a lot of sets of notes in my time. If you're near me I'd happily try and help you go through them and we could work out a list of questions. I'm NOT a medic though but understand some of the lingo.

You are so very young to go through this and again, unless you'e posting from abroad, you're up so late at night again. Are you sleeping badly? When I was at your stage I used Nytol Herbal (got it from Boots) along with Rescue Remedy (night version) and I was also given some Diazepam from the GP for the really bad nights. The Nytol worked so well for me that I only had 3 Diazepam in the end and they're locked in the top of the medicine cupboard now.

Another option is for you to talk to your MacMillan Nurse, or, if you haven't got one, find out where your nearest Macmillan centre is and go there instead. Tell them your fears and everything.

OR go to your GP. Ring them and ask for an enlongated appointment (at least an hour). Before you go take your notes which you've been through already and your list of questions. Get him to give you answers in laymans terms. Steel yourself to ask for clarification on anything you don't fully understand. Take notes, take a friend if you can and maybe even ask if you can record your meeting if you have that facility on your phone or if you can access a dictaphone.

What support have you got from DP /DH, friends and family? Have you told them about the BC yet?

Lastly, DO NOT go on the internet looking for answers or for help with your notes. You will encounter some very scary stuff there and it will be nothing but counter-productive.

Had chemo no. 3 yesterday and the blood transfusion. Because it's Good Friday today they were in chaos because they were trying to chemo all the Friday patients as well. It was 4 hours after my arrival before they even started mine, so as the chemo took 2 hours, then an hour of faffing around whilst they arranged the blood, then it took another 4 hours to give me the blood you can imagine it was a long day. Their internet was down and I don't have a dongle so I couldn't even wind you lot up in incessant drivel. Yay for books! Annoyingly I also slept quite a bit and I had a rubbish night last night.

By the time I got home though I had managed to develop a sore throat and i think I've got a cold coming. I am so worried that this is going to land me back in hospital again. I'm hoping that the fact I've got 11 neutrophils, and the blood transfusion will help me too and that fact they're now giving me 7 post chemo GCS-F jabs that I may get away with it.

Lordy I've wibbled on haven't I. Making up for enforced silence yesterday.

MaryAnnSingleton · 02/04/2010 09:00

ebbie - Pennies advice sounds good to me -sending you good thoughts and love
Pennies - so sorry you were internet-less and had such a long haul on Thursday -hope you aren't getting a cold.
Am feeling ok about the CBT - I just panicked yesterday -I think that if I can do th grief counselling it might help a great deal as everything points to that being a trigger for my probs. I was recommended a CBT self help book yesterday which I've ordered from Amazon.

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sandripples · 02/04/2010 09:31

Ebbie, sorry I can't add to what Pennies has said, but I think she's making good suggestions. Sending support over to you over the net.

Pennies - sorry to hear you had a long haul yesterday - I hope you have a cold free easter.

Cakesandale · 02/04/2010 10:45

Phew - just caught up with you all. Sorry for all the hassles you are variously having, and Ebbie - I was going to say what Pennies said (not, regretfully, all the stuff about knowing anything about medical notes, because I don't, but if you are in theMidlands I would be happy to come along and be assertive on your behalf if it would help. I can be a Rottweiler, as long as it is not on my own behalf, when I am mostly abject. Have you tried the Macmilan nurses? I know RWU has found them very good at cutting through crap on her behalf).

Hope all are feeling better today, and that you have a relaxing Easter.

Just need to use these so bear with me

Cakesandale · 02/04/2010 10:47

Actually I think this one is my favourite

sandripples · 02/04/2010 13:15

I like this one too

reallywoundup · 02/04/2010 21:54

love the easter smilies! i am still here, have been (almost) following the thread via my iPod, but i'll admit now its been gogin in one ear and out of the other. I am heavily drugged up and quite enjoying it !

Ebbie, someone mentioned Macmillan Nurses, in my experience they are universally fantastic, and often 'kick-ass' on my behalf! You need to be referred i think, but any health proffesional can do that (GP, HV, Onc etc etc even social worker i believe) Or, you can call a helpline, and they will give you advice over the phone and may be able to put you in contact with someone local to you. They were my first port of call at diagnosis, and have been with me every step of the (very long!) way.

MAS- bugger about the CBT, hope the book helps though.

Pennies, long day at the hosp, doesn't sound to nice.

SR- everything ok chemo wise?

wubbly, diagnosis sounds better than you expected which is good, once you can start talking in facts it becomes a bit easier to deal with as it's more practical i think (but that may just be me!)

KK, no mention in this weeks round-up, tut tut, but also sorry to hear the herceptin is causing nasty SE, not too much longer though, only a few more treatments from what i can remember.

Right, sorry if i've missed anything groundbreaking from anyone else- still wincing at the thought of more head surgery for MAS after the 'bleeder' incident.

I am still in the wheelchair [proper old duffer] except when i am left to amuse myself i am hoping to start walking around properly tomorrow, i feel a lot better breathing wise but it has taken its toll on my body, i ache from head to toe and generally feel weak. i have a meeting with my mac nurse on Tuesday to discuss palliative care and things, i want to get a plan sorted now or at the very least explore all the options iyswim, not because i think i need it (and hopefully won't need it for years and years!) but because at least if it is sorted and done then when i do need it we don't have to waste any time and everyone knows my wishes- last weekend really scared me

i've waffled on now! right i'm off to bed with a book, the trek up the stairs takes quite some time atm! best wishes to you all x

MaryAnnSingleton · 03/04/2010 09:13

hi RWU - hope you can have a little walk today
and lots of chocolate tomorrow to get your strength up.
I really hope that the talk with the Mac nurse is ok and that you get things sorted so that you won't have to worry about it -and anyway, you aren't going anywhere for a long,long time missy
Take care today everyone...back later x

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sandripples · 03/04/2010 11:54

Hi RWU - I'm glad to hear your news - was wondering how you were. I also hope your talk with the McM nurse is helpful re palliative care etc, then you can store it away for a very long time. I'm so sorry last w/e scared you- it sounded horrid.

I feel a bit yukky and very short on energy. Haven't done many walks at all this time, and only extremely short ones. But otherwise I'm OK thanks - just a bit irritable with DH!

Just have to send a few more bunny wishes to you all
Isn't it funny how we all love a bunny.

KurriKurri · 03/04/2010 20:56

Hello everyone, Hope you're feeling a bit better today RWU. Sorry you've had such a lousy, scary week . I reckon Mr RWU the Easter Bunny, needs to bring you something very chocolaty tomorrow.

Sorry you're feeling a bit yukky SR, steroids always made me very grumpy (I blamed them anyway!)

Hope everyone else is OK, and not feeling too awful if you had treatment last week.

I am a bit less achy today. I managed some yoga this morning, and a bit of gardening this afternoon. Connie made a simnel cake yesterday, so have been getting into the Easter spirit by eating a lot of it.

KurriKurri · 03/04/2010 21:00

Bother, bother - pressed post instead of preview, I meant DD in the last sentence, - not concentrating.

ebbie22 · 04/04/2010 00:35

thank you so much for all your good advice,i am trying to take it all on board..

I am a single mum,so haven'treally got much if any support,parents are away and the more i say to others the more freaked out they get,so decided was best to go alone,or with the help from you guys..

My ex husband is more of an arse than usual and im trying to fit everything in a day that i normally would before i started getting sick..
Am back on form now,and after having moved 6 weeks ago,the same time or just before the bombshell i need to stay up to get a bit of me time.
although my daughter has just come down with tonsultis,so the reason why my last post was later than normal..
..
I did speak to a macmillan nurse but was in a hurry and knew id have to face up to stuff so have just tried to block it all out {something that i know i am very good at short term }.
I am in houghton regis,bedfordshire,and would be SO very grateful if you wouldn't mind going thru my notes with me,I have tried to go back to the doctors,and have been thobbed off time and time again,and allthough i need to fight this,I know its not just my breast that my body has issues with and without an answer i am forever fighting losing battle..

and know i need to change to another doctor but am just a bit sick of it all at the moment...
Though here i am going on,and on and your all so upbeat and im not going thru even a quater of what you all are..I do think of you all and hope that we all get thru this and together xxxmy email is [email protected]

MaryAnnSingleton · 04/04/2010 08:59

ebbie - must be very tough being a single parent and dealing with all this
SR - hope you are feeling less yukky today and KK less achy - the simnel cake should help ! btw your dd has a lovely name
Hope RWU is on her feet...
and hope you all have a lovely Easter Day...
this'll be my first chocolate day - hooray hooray

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KurriKurri · 04/04/2010 13:33

Ebbie so sorry you are going through all this, I am trying to think where would be the best lace for you to get help. As someone has already said (Pennies i think) you need a long Doctors appointment, and write down everything you want to ask. Write everything you're feeling, all your fears, what is going through your mind and give it to the doc. It will be easier than trying to remember everything you want to say.

It sounds so much as if you need an advocate to help you get the answers you need. Do you have a Breast care nurse? they are usually very good, macmillan nurses, and Breast Cancer Care have help lines, you could ring and ask advice (I will try to find the numbers and put them up soon). I hope between us we can help you get the help you need. Take care xx

Hope everyone else is fine. MAS - thank you but Well done on managing to stick to no choc, you will enjoy it all the more today

sandripples · 04/04/2010 14:49

I've been out for 2 decent walks over yesterday/today and definitely feel better. The air, the gentle exercise and the loadsmoderate quantities of Simnel cake, cheese cake and chocolate have also cheered me up.

Have also discovered my DD knows the key player in the Cambridge University Challenge team - final is tomorrow evening so will be watching with renewed interest! You might have seen articles about him although he's actully shy and does not want all this hype.

BTW is anyone else a Masterchef addict? Its going to be an exciting week for us

Sunny here so will go out and do few more pots.

Happy Easter

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