38th tamoxifen - waiting for summer in the bus shelter

[Gigondas]

New thread.

Sorry meant to start chemo as you're having that first aren't you

Just reporting in to say that I was at work today, as normal. Much easier to get through the day with a load of work to do! I'm reading all the posts and sending to all of you - why isn't there a chocolate option?

Malt - first chemo on Thursday. Picc line tomorrow. After Thursday I guess it will be BAU for a while then - all tests/scans are done so no more results to get - just in it for the long haul.

earth glad the chemo went well

notJ - I'm obviously no where near where you are yet but I should imagine it's pretty normal to have a wobbly moment or two before a scan. We never really get to leave cancer completely behind do we?

Well my onc appointment went well. The Dr went into lots of detail. They were running over an hour behind though, but it gave me chance for a good chat with my BCN (she gets lovelier every time I see her ) I talked to her about the option of a double mx - she said the surgeon would want to talk to me and I would also probably have to have a session with a psychologist, but they generally support your choice if that's what you want and they are sure you understand all the pros and cons.

I'll be having FEC-T chemotherapy. Three doses of FEC then three doses taxotere, with a three week gap between each treatment cycle. That's a fairly standard regimen I think? Then five weeks or so after the last chemo cycle I will have my mastectomy surgery. They will also start hormone therapy (tamoxifen) after chemo. They can't confirm if I will definitely be having radiotherapy until they get the pathology results after surgery, but at the moment it is more likely than not that will follow too given the size of the tumour.

The consultant wants to get cracking as soon as possible, i.e next week, so hopefully I'll get a phone call tomorrow to let me know on what day my invitation to the cocktail bar falls. (It was 17:55 by the time I got out from my appointment, so no around to organise it today!) So in terms of a plan, my last chemo should be w/c 7/10 and my surgery mid-November. He says if the scans coming up (Thurs and Tues) do find any secondaries (everything crossed they don't) then the only thing that would change is that they would give me an extra drug for bone mets.

Lets get this show on the road. Any top tips for chemo?

Betsy - sounds like we are on the same path then. I am having FEC (and only FEC?) - same op & rads as you and also Tamoxifen.
I've already had my scans and waiting for those results was the worst bit for me so fingers tightly crossed for you (you already had clear nodes though didn't you?).
Looks like you will be 1 week behind me

Evening All - Thanks to everyone for being so welcoming. It will take me time to catch up on all your stories properly but at the moment I am so grateful to find a group of honest and courageous people!

I spent today with SIL. She is very emotional and I just tried to listen and take her lead. She had her first chemo on Thursday and had a really rough weekend - she felt like it left her feeling a bit loopy, like she was loosing her mind. Real vivid horrible dreams and just didnt know how to control herself. Does that make sense?

Can I ask a question about hair loss? This is something she is finding really difficult to accept. She has really long hair that she loves. She is going on Friday to sort a wig out. She wants me to shave her head in preparation. Will her hair fall out this quickly?

Im worried about how she will cope over the next few months. sHE is signed off work and lives in an isolated area. She hasnt told any firends about her diagnosis - she is fiercely private and only immediate family know. I worry that we cant be there all the time and that she wont cope being on her own.

Im sorry to come on here with doom and gloom. I can offer out some and chocolate biscuits if that helps?

kitkat if you don't mind me asking, what size do they reckon your lump is? Am bricking it for the scans to check for secondaries, definitely the worst bit. I'll hold your hand on Thursday if you hold my hand next week? :)

making I only know from reading as opposed to personal experience (starting chemo next week) - hair loss can very from person to person and also depending on what chemo drugs you are on. Typically it starts to fall out 2-3 weeks after the first treatment. Some people just get thinning rather than losing everything. Usually it just gradually gets thinner over a few weeks, but for a few people it can all fall out suddenly. (btw there are loads of great info books you can download from the breast cancer care site - please keep posting here too, but just so you know they are there, there are booklet for just about every topic you can think of!) I can only talk personally, but I have found it so much easier since friends and family know (we didn't tell anyone for 6 days) and I can't believe how lovely and supportive everyone is, even people I don't know that well really.

Thanks Betsy I will have a look for those booklets. I want to understand as much as possible so that she doesnt have to explain everything to me. For some reason she is convinced that her hair is going to fall out if she touches it. She hasnt touched it since she had chemo on Thursday.

Good luck for next week, there is so much support on here and lots of hands for you to hold. Including mine

Betsy - 6 cm - or in their words 'very large'. Completely invisible on mamogram and ultrasound though. It's on the outside of the right breast - near the armpit. They told me that the protocol is that anything over 3cm requires a CT scan. I was bricking it too - after those results it feels like it has got a lot easier. I also had an MRI (due to tumour being invisible) and they found a lump (also invisible) in the other breast but thankfully that one was benign.
Also as my breasts are not large it limits the surgical options.

You are my official twin kitkat :) Mine is 7cm - or in their words 'that's quite a large mass'. Mine is also on the outside of the right breast near the armpit. (I also have 2cm & 2.5cm bits in the R breast too) You give me hope that it is possible I could be clear elsewhere - everything tightly crossed. (FNA on dodgy armpit node was clear, but of course that's only one node & relying on needle hitting the right spot, but clear so far is better than not :) )

Making the loopy feeling your sil is having is prob down to the steroids .
They give you a dose in the chemo , then they also give you oral steroids for a few days afterwards .
Sent me absolutely loopy too .

As for the hair . Normally around the 2nd dose of chemo it comes out .
When mine started coming out , I shaved it all off .
But I was never that attached to my hair .
She will be entitled to an nhs wig , breast care nurses can tell her who they refer to .

ah Ok - I had 2 nodes removed - sentinal and the next one and got my all clear (well almost all clear - so clear enough) on them.
My consultant said even in ladies with tumours of my size and position there was a 29% chance of clear nodes - I thought that was rubbish odds but i got lucky I guess

Remind me what type you have - mine is Eostrogen + (very strongly apparently). But un-aggressive (5% whatever that means).

Betsy - also they made me feel really stupid with all the 'that's a very large lump' comments which I didn't appreciate

Makingdoo - what chemo is she on? I didn't loose my hair, it just went thin. I have a couple of seriously scary wigs though. I spent ££ on them but never wore them, they are synthetic and look it. I would recommend human hair ones if she wants to wear them out of the house. (if she can afford them). She may be happier with a nice scarf or hat.

Usually the hair loss is pretty quick when it does happen and it may be easier to cope with a nice short haircut first so it doesn't fall out in clumps in the shower.

Would she consider counselling? I had a couple of sessions at a haven center which really helped me. It is perfectly normal to go a bit mad when all this happens to you. If she has had steroids with her chemo she will be climbing the walls a bit, it goes away thankfully. Tell her to hang in there.

Emin - glad it all went well. You handled it like a boss as ds would say.

Notj - you are allowed a wobble. Hope your scan is quick and results clear.

Betsy - good luck with picc line.

I have been sunbathing, reading a book and having coffee with friends today. Very pleasant. Very tired no though.

Is it lobular kitkat? They can be elusive on mammograms...

Betsy, my team were brilliant regarding prophylactic mx, but I did have to see a Psycologist to make sure I was of sound mind - yeh right

And oh, my hair hung around till well after my second chemo; I had the standard FEC/T - and found Tax easier than the FEC - although I pretty much sailed through all 6 infusions. No tamoxifen, but I did have Heceptin for the year.

My secret weapons were drink plenty of water, and take a dose of Manuka Honey each day.

snails - i don't know - nothing has been mentioned - do I need to know?

Making I'm no expert but I would have thought going from long hair to shaving it off will be a huge shock for her, I think when the time comes for me I will have it cut short first.

Trice glad you've had a good day it was sunny here too but then rained at the end of the day not sure why I often do a little weather report on here

Betsy and Kitkat you both sound very organised and knowledgable about things, Hope it goes well for you both x

Watching the call centre on bbc3 glad I don't work there !

topsy Thanks I didnt realise about the sterioids having that effect.

Trice Im not sure exactly what type of chemo. I didnt want to ask too many questions.

She is going to a human hair wig and has already had the consultation. I just dont ant her to put herself through the trauma of shaving it all off if she doesnt need too.

She spoke with her care nurse yesterday and they have referred her for counselling. Im surprised this doesnt happen automatically actually.

Trice sounds like you had a lovely wee day

makingindo mine did come out in the first cycle but it must have been the fourth week (?) I had a bad infection in the second week of my first cycle and spent a week in hospital but I was well enough by then, and my white blood cells had risen enough for me to go out but to delay the next chemo so it must have been the fourth week . So I was at a mothers coffee morning amongst trophy wives with gorgeously coiffured blonde locks and alpha mothers when my hair started quite spontaneously to go south and bestow itself on my cream wool cardigan and the cream designer sofa. It was tied back in a slide and I did try to keep trying to put it back in place but it kept escaping. The mother whose immaculate home it was looked somewhat repulsed and put out (I know they do a good pet hair Dyson but do they do one for shoulder length human hair??? )

So not touching your hair ain't going to make any difference. It didn't actually all fall out but I shaved it off because I looked like one of those old crones they used to have on Star Trek after the elixir of youth had worn off.

I had a very expensive human hair wig that was very much thicker than my own hair because I had always wanted thick hair but it made me look like a drag Queen so I would wait to choose a wig, I hardly wore it. A lot of human hair wigs are made with Chinese or Indian hair, not many westerners being in the market of selling their hair, so it tends to be thick and not weedy and lank silky like mine.

BTW snotty trophy wife ran off with a woman so clearly the whole edifice of her life was a sham, so it was probably real life intruding that disturbed her so much. I gather they are very happy and living in Oxfordshire, bet they don't have cream sofas....

gigs Just discovered I still have the anti shoplifting tag on my cardigan . If you noticed I am neither a shoplifter or criminal who has been tagged. Really annoying as I have of course thrown away the receipt

Malt Thats my fear too - it will be such a shock for her. Im no expert either but I imagine a gradual loss ould be easier for her to come to terms with.

Copt Your story made me smile. I really think I need to get SIL on here as I think this would be therapy in itself!
Shes adamant on the wig so hopefully it will turn out ok for her

also they made me feel really stupid with all the 'that's a very large lump' comments which I didn't appreciate sad

Same here kitkat - they looked at me like they didn't believe me that it had only emerged from hiding over the past few weeks...

I'm ER+ too (and PR+ HER-) Mine is mixed lobular/ductal - Lobular is notorious for hiding, so if I was guessing that's probably what yours is too.

Making I've been surprised with the lack of support generally, like you say you'd think you would be offered counselling.
Copt that must have been a shock I imagined hair would fall out at night or in the shower. I will search for a nice wig I can't imagine myself in a scarf

As I wait for my little pill of peace to take me away I will say night night sleep tight hope no 4am postings and I hope Emin is still feeling ok
I'm going to drive tomorrow I'm going stir crazy and feel absolutely fine, won't go too far just a bit of retail therapy and to buy ds birthday cake. Freedom !
Xx

Support seems to vary from area to area, which is wrong, everyone should have the same good support. My BCN as absolutely fab,I her. She was also quick to pick up on me being a "facts" and fine detail person and not so much touchy feely. It's quite a skill to be able to read people and support them in a way that's right for them. I'm sorry you don't all have this :(

That's really good and you'll have the same one each time?I've seen mine twice and she was nice and went over what had been said and made sure we understood but I thought she might ring after a few days and see if I was ok ( naive obviously !) didn't see her at my Pre op or when I had my op can't really remember what she looks like now !