TAMOXIFEN THREAD HERE ***

[MaryAnnSingleton]

Am sick of my messages never getting through - I have had 7 attempts to reply to Cakes' last post- am starting a new thread ....
this is what I wrote anyway.....

righto, this i my 7th attempt to reply on this thread - everything keeps disappearing !
My assessment is on 25th,and am told to allow two hours for it,crikey !!
Saw a lady in town yesterday who was having rads and finished at about the same time as me and she's just seen the onc. for her follow up - they are running very behind I know- so I emailed to ask about mine - I tie myself in knots in trying to be assertive yet not too needy or a nuisance - I suppose I just like to feel that everything is done in order. Am not worrying about my health -am sure breast is fine and dandy, it's more my emotional state which troubles me.
Anyway, they have made me an appointment but it's at the same time as my assessment so have emailed back and left a phone message...arghh !
Special thoughts for RWU today and of course KurriKurri - hope all ok..and of course you Cakes and Morph.

Good luck for various things to RWU, Pennies and Mr KK!

SR - I think MAS is right it does vary from person to person, depending on where the surgery was etc. and it is stll VERY early days for you.My surgery was last April, finished rads at the end of November, and my boob still doesn't feel the same as the other one. And the bit under my arm felt like someone was drumming gently on it all day the other day - when I woke up the following day, a bit of residual swelling had disappeared, so I think the drumming was my body sorting that out. In the booklet thingy I was given it says this is all quite normal. (Well, it doesn't mention drumming, but tenderness and such).

Does anyone else find they are forgetful? I'm not thinking of those of you who are only a few weeks into it all, because the shock and the surgery can do that to you - but I am thinking of those of us who are a bit further down the line. I am extremely vague and scatty, it is worrying me a bit. The other day I used the word "unhealthy" and i couldn't for the life of me think if it was the right word for what I meant (it was, but it just sounded completely unfamiliar, somehow). And at the weekend, when it was so cold, i forgot to latch the rabbit hutch - the little buggers got out and spent the entire, freezing night, outside. And they are tiny, and very prone to buzzard attack around these parts. Yikes!

Thinking of RWU, Pennies and KK plus mr KK today and hoping all is goig well.

Thanks for your various comments about feelings in the boob and arm-pit. I didn't think you were boasting MAS, I'm just pleased for you! Think I've had about 4 packets of pain-killers now! I've got Tramadon (l?) , as well as Paracetamol although I try to take only one Tramadon a day.

Yes the bruising was quite spectacular so I suppose it takes a long time internally. I do feel old walking around so carefully to avoid bumps!

I hope you manage to find a good nanny soon Pennies.

Thinking of RWU, Pennies and KK plus mr KK today and hoping all is goig well.

Thanks for your various comments about feelings in the boob and arm-pit. I didn't think you were boasting MAS, I'm just pleased for you! Think I've had about 4 packets of pain-killers now! I've got Tramadon (l?) , as well as Paracetamol although I try to take only one Tramadon a day.

Yes the bruising was quite spectacular so I suppose it takes a long time internally. I do feel old walking around so carefully to avoid bumps!

I hope you manage to find a good nanny soon Pennies.

Hi Everyone,

Does anyone have any thoughts about/experience of what to tell very young children regarding treatment?

My DD is almost three and a half. So far she knows that 'mummy's boobies are poorly' because we have had to stop breastfeeding. But I'm not sure how much to tell her about what's going to happen in hospital. I'm having a bilateral mastectomy, and given how important my breasts have been in her life so far, it isn't exactly something I'm going to be able to keep from her. She is going to notice that they are missing!

I thought that I could tell her that the doctor can't make my 'boobies' better, so she has to take them away and then in a little while I will get new ones.

Is that too much information?

(Incidentally, I have found reading this thread very helpful and I'm really glad Cakesandale pointed me towards it. I'm very aware that I have not yet contributed much by way of supportiveness for others. This whole thing is a bit raw still and I'm feeling very self-focussed at present. I will get there, though, so please bear with me!)

Hi Burning Bright. My dd is six, so I have had similar worries myself. For what it's worth, your ideas on this sound perfect.

Children are very accepting of what you tell them, so if you say it in a matter of fact way she will very likely just accept it. There may be questions, just do your best with those.She will very likely want to know what kind of poorly, whether it is going to hurt, how long you will be away, but essentailly her concerns will be about the fact that you will be still there, and things will go on much as before. If you have now stopped the breastfeeding, she has probably got over one of the hardest bits for her. Your absence in hospital is also likely to be a trial for her, so you could talk to her about what it's like in hospital, how you'll be able to phone her, and what she will be doing while you are away.

Are you booked for 15th? Have I got that right? It will be good to get things moving, waiting is always tough.

And PLEASE don't worry about being supportive to us at this point, you'll get your chance later, believe me!

For now I am glad if we can help.

How are you feeling yourself?

Burning Bright - I am facing the same as you (and on the same day I think!). I've not told my DDs yet (aged 4 & 5) although they know my chest is poorly. However, what I do plan to do is to explain it by using an apple with a bruise and show them that the bruised bit isn't good but that we can chop that off and the rest of the apple is completely fine for us to eat. I felt that making a visual portrayal of the process would help them grasp the concept a bit better. This is my own idea though, I've not sought any professional advice on it.

So, y' day had bone scan results which were all clear, and I'm HER2+ which apparently is a good thing, despite it meaning the cancer is an aggressive one.

The surgeon wanted me to have a one sided MX but I've chosen to go for a bi-lateral one as a risk reducing option. There's no evidence that this is a genetic cancer, but I've had 3 different cancers now and each time it's been shit. My children are young and I have to do my best to be there for them. There's the added thing that mammograms don't pick up 20% of tumours and it didn't pick up on the satellite tumour in my affected breast so my faith in screening is not strong enough to stop me worrying. Also I'm now rather phobic about my breasts - terrified to even look at them. I do however feel VERY wobbly about my decision and haven't yet even looked at images of most MX patients as I can't face it. I'm teary today and immensely sad about the whole thing.

Dr wants me to have chemo, radio & herceptin in UCL Hospt in London (can you believe that there is no radiation facility in Herts?!). So that means a train ride in and back each time. It sounds like a hassle but he said that it is what he would recommend to his wife so he obviously thinks they're good down there. Also the whole UCL thing is brand spanking new and up to date so that is confidence boosting. It will be an uber hassle when I have to do daily rads but hey, I'll get some good shopping in! What threw me was the Herceptin treatment. I thought this was just another tablet that I'd merrily consume for breakfast each day with a toasted tamoxifen on the side. It turns out it's jabs every 3 weeks for a year, so to me that has extended this whole nightmare by another year by which time I'll be so bloody sick of that train ride!

So, I'm rambling on, emptying my head.

RWU - I hope your appt went well.

By the way, WRT to the bilateral MX, I know this is a difficult thing to ask an answer for but WWYD? Or for those who opted for just the unilateral MX can you tell me why you opted for that and what you feel about it now? No need to answer though, it is, of course a very personal question to ask.

Hi Pennies

Your apple idea sounds genius.

Yay! for your bone scans! I had no idea you had already had three cancers, poor old thing, no wonder you have opted for a more radical approach, I think that is entirely understandable.

KK can tell you about herceptin I think, and is always happy to answer any questions. I only had a lumpectomy and herceptin was not indicated in my case so I can't respond meaningfully to much of what you have said.

I can't believe you have to go all the way to London either. You are indeed going to be a bit sick of the trip. But you get into a routine and the three weeks of daily rads is soon over - get a good book or some nice music for your ipod and use the time to relax. I read some fantastic books last year, it is one good thing to have come out of the whole sorry episode

BB - I am not going to tell my DDs that I will get new ones for a couple of reasons:.

1. I am not sure I will have reconstruction. I'm not good with fake nails and false lashes etc so until I am sure I really, really want them then it's not on the cards.

2. I taking an honest as possible approach with them and I think that it might confuse them. It might either make them think that they grow back (and I don't want to mislead them) or it might be too confusing a concept for them to deal with and I can't think of a good way of explaining it.

Either way, you know your DD best, and she's that bit younger than mine so follow your gut instinct. I looked at Winston's wish for guidance on how to approach it with the children. Don't be put off by the fact that the main focus of the website is for helping children through the terminal illness of a loved one - it does also deal with talking to children about serious, yet recoverable illnesses like BC.

Pennies - have you had chemo and/or rads before? Do you know what to expect with those or is it all new territory?

I am going to a meeting now but will check back in later.

Hi Cakes - Hoping to only be in hospital for two nights and DD should be able to visit on day after surgery. She will be staying with my parents and the plan is to make it all a big adventure. We had a trial run at the weekend (first time she and I had ever spent a night apart) and it was fine.

Surgery is scheduled for 15 February, and yes I'll be glad to get everything underway, but also quite apprehensive.

I'm feeling OK, mostly. I have my moments, but I'm trying to be practical about it and not dwell on the aspects that make me feel scared or sad.

Pennies - your idea with the apple is good. I might think about using that.

Sounds like your experience so far has been pretty rough. Three different cancers! Having to do all that travelling does sound like a lot of hassle. But worth it if it's the best treatment available.

I have elected to have the bilateral mastectomy as a risk-reducing tactic too. My cancer is genetic. I carry the BRCA1 gene. My mum has had cancer three times because of the gene - two separate incidences of breast cancer, twelve years apart, and ovarian cancer about ten years ago. She's doing great now, but she feels very guilty - as if she chose to pass this gene on to me!

Pennies,

Just seen your other message about your reasons for not telling your DC about possible reconstruction.

I'm pretty sure I do want reconstruction. I'll probably tell DD that I might be able to get some 'new boobies' but that it won't be for a long time. Definitely don't want her thinking that they might grow back or that she'll be able to start nursing again. But it might also give me a way to tell her about chemo - to explain that I have to have some medicine first to make sure all the 'poorly' has gone away.

I'll have a think.

Burning Bright - you sound like you are doing really, really well with this, however wobbly you feel. The trial run has gone fine, and that is a big thing.

My dd had also never spent a night away from me when I had my surgery, and as I was not expecting to stay in, it was a total surprise, and hard for her.

I also said that about chemo - that the bad lump had been taken away, and the medicine was to try and make sure it did not come back. I got the inevitable worried question 0 could it come back - to which I truthfully answered that it could, but the medicine would help to make sure it didn't.

One day at a time, with the worrying. My only advice really - just don't get too far ahead of yourself, or bother with "what ifs".

I really am off to my meeting now, I could pither about for England.

Thank you Cakes, . As I said though I'm not sure if it the right thing to do professionally speaking but it has resonance for me and DH thinks it's the way forward to approach it with the girls too so I might as well try it. I hope it doesn't put them off apples tho!

Yes, me & cancer go way back. Old pals adversaries. Two skin cancers (one benign one very definitely not benign but caught early thank god) and now this.

Thanks, Cakesandale. In some ways, having to worry about DD and how to manage this so that she understands but is not scared or worried is quite useful. It stops me wallowing too much in feeling sorry for myself and reminds me of what's important - getting through it so that I continue to be around to carry on worrying about DD in the long term!

You're lucky with the two days thing - I've been told I'll be in for a week. Drains were mentioned and stuff. I just nodded.

No previous with chemo or rads - just a few too many surgeons' knives and stitches.

BB - your approach is spot on. It's how I try to look at it.

good heavens - lots of posts -am trying to catch up.
Pennies - you have had a bit of a hard time- also had no idea about the previous cancers...the UCL trip too sounds a bit of a schlep. Glad bone scan was clear - my SIL was HER2+ and had herceptin - this was several years ago (2005) before it was licensed I think and she had a real battle to get it (she was 33 at dx with an aggressive grade 3 and lymph node invasion) - we even started raising money to fund her buying it privately, but thankfully it all worked out and her PCT agreed to her having it.
BB -your plan of what to tell your dd sounds very sensible, just the right balance.
This has made me think that there's probably a market for a good,well illustrated book about bc aimed at children....

haven't time to catch up fully as you are all being very chatty but MAS just read your post- a book would be great, but a SERIES of books covering a wide range of cancer related subjects that affect dc's such as chemo, terminal illness etc would be a big WOW!! get busy on them- we'll all chip in ideas, i'm sure!

Agree with RWU, MAS - you are the person to do the pics! Do you really think it is a go-er? Maybe I could look at doing some words - although I am only an old hack!

RWU - how did it go yesterday? Don't leave us hanging!

yes,how was it RWU ?
Would be an interesting project - if you can come up with some words then I could certainly try out some pictures !

?.htm

oh dear- was trying to link...?.htm" REL="nofollow" >here

didn't work...

www.ashleycharitabletrust.org.uk/project-mummys_lump.php

Ah. That looks like it has been done pretty convincingly, then.

I'll take a more detailed look over the next day or two and see if there is a different approach that would be useful - let me know what you think as well!