*Tamoxigang Christmas Party* - 45

[Tiny100]

Morning All!

We're nearly in December, so let's get the festivities started.

[adds mince pies to the trolley]

Tiny I don't know what the codes mean can you ring your BCN or gap and ask ?
I think it's a bad idea to send us these letters, I think we've all had a panic reading them as we don't understand what they mean or if makes things sound much worse, try not to panic
Are you still feeling ok ?
Gigs how are you now ?
Love to all

That was meant to say gp not gap, you could ring gap but I don't think they'd help !

tiny - it's the TMN classification system for staging - more info here

I think they use Mx when they aren't sure about possible mets, (M0 = no evidence of mets, M1 = definitely got mets)

off to catch up, just wanted to post this first.

I hope all the TAXers are still managing to avoid the TAX-truck

wren - glad to hear you are starting to feel better after your op. Listen to amber re stats - Also I don't know if this helps, but I've come to the conclusion that you can quite easily drive yourself mad worrying about stats. On an individual level we will be either 0% recurrence or 100% recurrence and none of us know which one we will be. Your odds could be a 1% chance of recurrence, someone has to be that 1 in 100 and if it's you it's shit not good.

kitkat - I hope your nail hangs on - I'm convinced my big toe nails will go at some point as they feel kind of loose (and have done since shortly after tax round one!) They also don't appear to have grown (one is has a big blue mark which hasn't moved), which makes me think another nail is growing underneath. Hopefully we will have lovely nails again before sandal weather. :) Not long til your surgery now, hope it goes well.

Hi Betsy - my nail seems a bit better now. I cut both big toe nails as short as I could and although it still feels a bit odd it is not as bad as before and looks better.
I hope you are keep well and surviving your Rads.

Tiny - if it's any help a lot of results are not clear cut so there can be interpretation used - maybe different interpretations between your 2 docs?
In my case I had a 0.22mm net in 1 sentinal node - anything 0.2mm or less is considered a micronet and treated as clear but both my onc and surgeon said the extra 0.02mm I had could be due to measuring (as such tiny amounts) so I would be treated as clear but that technically I wasn't.

Ruby, I think you're right about the stats. 66% gives me more of a chance than not. It may well be that in a world of 80/90%s that felt terrible to the oncologist and so she was unable to give me a positive take. Thanks. Just talking about it here helps normalise it and bring down my anxiety. betsy, you're completely right that madness lies in over focusing on the stats. For some reason I'd got very fixed on this question. I'll have to move on. Still don't like it, though.

Tiny, seeing these things on paper is deeply stressful. I'm beginning to think that there's much more ambiguity in some of our results than many of the clinical consultations imply. For example, two people told me my CT scan was clear until a third told me there was a bit of a question mark. Your oncologist is likely to be giving you the most balanced and best judgement of the situation.

Odds of 66% were on data from ten years ago. Treatment now is nothing like treatment then. We are now in cyberknife, genetics and nanotechnology/bio-arming stuff. So be confident that 66% is rhubarb. They have to say old data in case of getting sued.

Agree, thinking about stats for reoccurance officially will drive you insane. I have been there and done that. At my first meeting with onc I tried to push him for % likelihood of reoccurance and he refused to be drawn on the subject. Then I got a letter saying that having chemo would reduce the odds of reoccurance by 10-20%. Great, but when you don't know from what then these stats are meaningless.

I have since moved on slightly to the view that, if it comes back, it comes back. No amount of stats will stop that happening. Of course I'm terrified it will return, and that fear will never ever leave me, but I'm trying to live in the here and now, and worry about things I can have an influence on. And to enjoy what life has given me.

Currently sitting her have Tax no 3 ( chemo no 6) - only one more to go after this, woo hoo!!!!!!!!

Handbags, it must feel great to be so near the end of chemo. Hooray! But isn't chemo number 6 usually the last? Or is that just wrong?

Amber, thanks as ever for your encouraging words. Rhubarb it is, then.

Handbags I've heard of people having 6 or 8 chemos but not 7 you must be unique
Great that you're near the end though

Wren, chemo regimes seen to be different for everyone. My onc originally wanted to give me 7 or 8 chemos (3 or 4 x EC and 4 x Tax), but I had so many side effects on EC that he stopped it at 3. But still 4x Tax. I have to say, so far the Tax has been easier to cope with than the EC - the worst side effects of the Tax for me have been one day of terrible bone aches/tiredness and a dreadful rash all over my face.

But you're right, I think people generally get 6 x chemos for BC. I think my onc is of the belt and braces variety!

Malt - I'm obviously very special

Tiny - hope u are ok. It's very disconcerting to see conflicting information.
Wren - it's hard not to think about the stats. I've never asked my onc. Don't know if she would hazard a guess.
I'm on 4 FEC, 4 tax, poss because my ca is triple negative.
Managed all school runs today as well as taking 3 small people to dentist, now cooking dinner. Knackered!

Handbags of course you are special
Weebarra I'm the same I've never asked about statistics and they've never told me !

Does anyone else find they avoid people these days? Told my dh that if I see someone I know in the supermarket etc I try and go down a different aisle so I don't have to talk to them, he thought it was a bit odd I just can't be bothered with answering questions about how I am plus I'm embarrassed at my appearance.

ah Malt - you have no reason to worry about your appearance - you look great with your wig on and we all think you great without it now as well!!

I never got told any stats either - just that it was 'treatable BC'. I have looked up info myself since but I am very fortunate to have had a big improvement in prognosis post mx once full histology was available.

Tiny N1 means 1-3 nodes involved and N2 means 4 or more nodes involved. The change could just mean there was one more node involved, or perhaps one doctor is working from the MRI and another from the surgery results (sorry can't remember if you've had surgery yet). An X after the letter means it cannot be assessed. Which I suppose is also what the ?1 means... Perhaps just different ways of expressing the same thing! When is your next appointment? It might be worth phoning your BCN to ask about it.

So looks like I'm in for 5weeks of Radiotherapy, once my Chemo is finished. Will have it in breast and neck/ collar bone area! Apparently the nodes in that area can be affected and they aren't able to remove those when they do the clearance! Suddenly realised what a LONG LONG fight this is! Especially when I was handed a booklet about Radiotherapy and a booklet about hormone therapy

This was officially my worst birthday ever. I'm off to bed for a cry, and a snuggle with my favourite ted!

Sorry haven't had chance to read todays posts. Will catch up soon. Xx

Just sending love light and hus to all.

I am in limbo land between chemo and surgery but I do have the amusement of a huge sebaceous cyst on my back that has the GPs confused. They have upped the antobiotics today. Had the nurse and 2 doctors umming and ahhing today.

Really happy birthday sorry it's not been great though. You can celebrate another time ! They mentioned to me ages ago about radiotherapy in my neck area but I don't know now as my nodes were clear. I have an appointment tomorrow so maybe I'll find out

Kitkat thank you it's more than that though I think I'm embarrassed to have cancer which is a bit ridiculous really

Foo foo does it hurt ? Hope it clears up soon. Is your itchy head better now ?

malt - I do know what you mean re avoiding people. I think partly I'm fed up with "head tilt". I'd prefer if people forgot!

Happy birthday, really, so sorry it's so rough. The ted snuggle sounds good. Have a as well. I had an unexpected cry when I figured out that I am likely to be bald for my fiftieth (stupid the things one focuses on). And with current chemo dates I look likely to actually have chemo on the big 50. It's kind of comic in a black sort of way.

And malt, I agree. I just find it tiring to tell people/ update people/ be the focus of sympathetic attention. If I had the energy to go to a supermarket I'd definitely be aisle dodging. As we only ever shop online now (for EVERYTHING) I shall continue to avoid it for now.

hugs to everyone who is feeling down today.

Really - a week of rads is a long slog but you will get through it and hopefully it will be relatively easy compared to chemo. the whole process does last for ages - i am on the last leg and it's alreaady been 8 months for me - I kind of think you don't realise how long when you start out.

Wren - chemo on your birthday is poo - especially a big one like that. You seem to have been particularly unlucky what with spending Christmas in hospital as well.

and foo - i don't know what to say to you - is your cycst treatment related in anyway or just something else?

I had my pre-op assessment this afternoon and all went well so all set for Friday.
Also my GP surgery rang to tell me they had my results from my latest fasting glucose test but that they would not tell me the results (bizarrely I dropped in yesterday to get the results and got told the same then). SO I got offered a tele consultation with the nurse tomorrow at 12:30 - I asked if i could have any time not between 12 and 1 so they said I could have 12:40 instead. Honestly - so that's my lunch plans messed up and I have a feeling it will not be good news.
I hate my surgery with a passion and once I get my mirena removed next week will be changing surgery. The funny thing the alternative is in the same builidng and the reception is the other end of the counter so I'll still get to see the same witchey receptionists (but not have to speak to them) .

kitkat boo hiss to your Drs surgery. Do change. Mine has been great (not sure other patients woud agree with my hogging all the Drs time)

really sorry I missed the fact it was your birthday. Happy birthday seems a bit empty seeing as you are down but please treat yourself to something tomorrow. Even if its just a trashy mag and lush coffee.

malt head still itchy, just deloused ten year old who ad nots. Too scared to do mine as shedding more than usual and it might pull all my hair out!
And the cyst does hurt! Don't I have it as run down.

really happy birthday. Be nice to yourself for the rest of the week. My sister tells me that rads is like going on a sunbed.. And you even get a tan. One of my best friends used to schedule her rads during her lunch hour from work. So not in same league as chemo at all.

Malt on the few days that school run isn't covered for me! I turn up 5 mins late for collection. Even if most moms there don't even know my diagnosis.. But I'm still getting comments on the new hairstyle! For those that do ask how I am, the answer is usually 'great'! And change the subject...

wren you may end up getting a chemo session pushed out by a week. It happened to me in Dec. Does the place you bought your wig from have a service to wash and style your wig? I did this before Christmas. Felt like I had a trip to the hairdressers! (Not really, but it did look nicer...).

So far no tax truck for me yet. I think the steroids will keep me going til Thur/fri. I am popping pain killer at first sign of achy bones. Had just a twinge last night. Only problem so far is the lack of sleep. And the taste buds are starting to go.