Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Well that small pit of fear turned out to be well founded. I knew it was all going too well.

I have invasive ductal carcinoma, grade 3 and not the grade 2 as per the original biopsy. Ki67 is 40% and not 5% as per the original biopsy. I will therefore need chemo.

I want to cry but not in front of the kids so I'm going to have to hold it all in for another 3 hours.

So, I will be having 3 FEC 100 followed by 3 tax (I think he said taxotier 100 - would that be about right? I was shaking by this point and possibly not hearing all the details correctly.) It would be every 3 weeks. Is this a standard regime? What state am I likely to be in on day 1 of treatment vs day 5 of treatment? I'm trying to plan car pooling!

On the bright side, the tumour was only 1.8cm and they got it all, although it did require 2 slices. Everything is healing nicely.

I need to go and make dinner before I can do more research.

Tiny sorry to hear that, we all understand the fear :( is he giving you scans ? Did the 50 50 just mean that he didn't know ?

Updating big hugs it's horrid to hear you have to have chemo but you will get through it I promise. That's the same as me, I went from grade 2 to 3 too and had fec t, 6 lots 3 weeks apart.
Everyone reacts differently but I felt worst from around day 3 to 7 then felt ok until the next cycle. It does build up though so by the end it took much longer to recover than on cycle 1
We will help you through it x

I have had counselling before, not health related. It can help. But you do need to find someone that you like/trust! I had an amazing lady. She made me feel so relaxed, that I ended up sharing my inner most thoughts. Which considering I was in a VERY dark place emotionally was amazing. It's a chance to share fears that you have kept bottled up and that you are afraid to say to the people you love! An outlet for things you maybe think you shouldn't say out loud.

I would definitely say give it a go! It's worth a try!

Updating like Malt, mine went from grade 2 to 3 between biopsy and actually having the lump removed, and similar to you, mine was 1.7mm. The chemo regime of 3 x FEC and 3 x tax, 3 weeks apart seems to be the standard regime, so nothing unusual there. Lots of ladies here have been through exactly the same, so you will get lots of reassurance and hand holding here.

Having finished my chemo yesterday I can reassure you that the thinking about it and anticipation is much worse than the doing of it - you will feel more relaxed about it once you have got started. It is a drag, yes, but you will get through it, promise.

Thanks Really re counselling. Am going to GP tomorrow to get a new sick note, so will ask her about it. Need to get my brain sorted out x

Updating - mine was grade 2 with Ki67 of 5% and I had the same chemo regime (it was my decision to complete the chemo in the end) - the difference is that it didn't work very well on my sluggish ole tumour whereas yours will likely be zapped (well would be if it hadn't already been chopped out anyway!!).

I know it's scarey but Amber was telling us just the other day that the grade makes little difference and she knows what she talking about. You will be fine once you get your head round it all.

Tiny - that's very upsetting about your shoulder but I guess they have no more info than they had before and your onc is only guessing - what are they going to do find out for sure? or is it just a wait and see situation?

I will be having the standard scans at the end of chemo, prior to surgery, but Oncologist said it is unlikely that they will give us any answers. He is going to speak to my Radiologist to see if a PET scan would be able to shed any light on the situation.

It is a calcium deposit, so will never go away, it might just be a case of waiting to see what it does, which will hopefully be nothing as this will mean it is not cancer. If it could be biopsied, we would know for sure, but it is too small.

Thanks for sharing your counselling experience Really. I don't open up easily to strangers, but I guess I have nothing to lose by trying it, just need to find out if Bupa will pay for it, not holding my breath.

Updating - Sorry to hear about your results, but you can and will get through chemo. Lots of ladies on here have done FEC-T, so can give advice and the rest of us will hold your hand. Six sessions, 3 weeks apart post surgery is pretty standard. Did you get your SNB results as well today?

Hi all
Updating, that's all strangely good news. As KitKat says re my earlier mutterings, Grade 3 is absolutely standard as a grade, and just means it's easier to kill with chemotherapy. So it's a technical note for the team, not a sign of it being more deadly. Modern treatments are very good.
Chemo sounds scary. But it's do-able. How seasick/travel nauseous/pregnancy-sick have you been in the past? That's a good indication of how you will be on chemo.
I am quite mad and worked all the way through chemo, went on holiday several times during it, saw friends and generally carried on regardless. But that is because my body processes chemicals differently. They put me on the very mild Herceptin drug afterwards and I was a complete mess. So everyone's different.
It's not fun, having the treatment, but so many good people here to help you.

tiny that's why it's important to find someone you feel comfortable with. I, like you don't find it easy to open up to people. Add to that the fact I had major trust issues. But 2 sessions in I was pouring my heart out. it's talking to someone who doesn't have an emotional connection to you. Someone who won't judge you, someone who you can say anything too!

I'm planning on seeing my old counsellor in a few weeks (she's on holiday) I wanted to wait until my treatment was over! But with all the issues I've been having, I think I need to see her sooner rather than later!

Hi all,
Haven't been on for a while as have been dragging myself to work and falling asleep on the sofa most nights. Have been lurking a bit though.

Hugs for tiny and updating on what sounds like a tough day for you both. Thinking of you. Glad to hear goodness is doing ok.

Have been feeling a bit down and tearful the last week or so. Not sure why. Everything's back to normal for me. Have been having a period so maybe it's hormonal. And anyway, what's that about ffs! I'm over 50 on tamoxifen with a mirena coil - please stop now!

Just a bit disappointed that I don't feel better than this. Work offers self-referral counselling and im thinking of taking it up. Sorry to be a misery when I've no real reason. Will give myself a talking to or maybe just go to bed.

Hello girls
Harriet, you may have had your op by now. I hope that it went well. Isn't it great to know we aren't alone - that so many of us are sharing each other's experiences. Less of a dark, lonely place.
ICU doc wrote on notes that my voice was clearly in working order. Something like that. My mum thought it was funny. I think it bloody well should be or who knows what they'd get up to.
Was in pain yesterday. Quite a lot. Tonight, I have been given an extra mix of painkillers on top of morphine. Working
Pain still comes but only after a while so have even had a few 30 mins of sleep
BP under 80. But other arm about 90
Passing a bag of water an hour. But they've checked me n I'm ok. Apparently. Feel ok. Bit lonely. I'm used to being awake at this time as do often have 'achey hips' but usually can look forward to my 3 y old waking at 6.30am. Bit bland only to have BP, temperature and a new bag to look forward to! Lol
Dreading going home (eventually) to a DS who misbehaves. Nurses in this ward are good. Very nice. I'm so lucky as had heard that night nurses weren't.
Tomorrow they'll want to get me up and about. Want to but am naturally nervous.
Me me me me
Sorry about that again.
Hope you're all having a pain free and restful night.
Xx

goodness ! so lovely to hear from you now you are on the "other side" I'm so glad all has gone well, may your recovery be Utica and painfree, so you can get home just as soon as possible.

marshy I'm sure when the "old hands" come on they will tell you that a post-treatment "dip" is very common. I'm waiting for mine :-D

updating ditto what has already been said about grade 3 (another 3er and FEC-Ter here) getting blasted by chemo, still a shock to hear the news though

tiny I hope they can find out the score with your shoulder, the "maybes" are always tough to deal with.

really hope you have a good kick/slap/chat with your BCN today :-D

Well having managed to hold five updates in, my poor chemo brain (when will it get better?!) has imploded, so I'm sorry for whatever/ whoever I've forgotten...

Not sure now when I'm back at work now as boss is insisting I get assessed by OH as fit to return first (already have fit note from GP to confirm this) They have a track record in "managing" anyone with long term sick history out the door...... Ho hum.....

Utica ? Where the F did that come from? (damn iPad autocorrect) quick

Morning all. And big wave to goodness

betsy I am useless at tracking who is having what .... So just do a general wave to all usually. I do read all posts just seem to have the retention abilities of a goldfish.

Pre op assessment today, stressing about BMI so will wear big scarf and thick socks for a bit of height.

Oh what a lovely morning
My lines have been flushed again
Oh what a lovely morning
Tram and morphine for the pain

Morning everyone

Goodness glad it went ok

Betsy what a pain about work, I know you're like me looking forward to going back I think we will feel more normal when we do.

Marshy big hugs I'm sure it's normal to have a dip,

Foo foo good luck with the stretching !
Not sure I could do counselling I like to keep things to myself, that's probably a good reason for having it though !
He job share partner is coming to see me today to get me up to date with all of the school gossip then out for lunch with another friend
Am I brave enough to see them wig less ? Not sure !
Hope everyone has a good day

Morning goodness, lovely to hear from you.

Betsy - you'll have to wow them in your assessment. They would be stupid to try and get rid of you - there is every chance you'll never need any more time off sick.

malt - if your friend is coming to your house you could try the wigless look before going out. I keep forgetting that mine is not on. It's DD parents evening today and she is still stressing about the hair situation.

foo - stand tall and stretch. They are much stricter about BMI for reconstruction only Ops as they can be delayed. Ordinary chopping out of bad bits usually goes ahead .

I am getting my new car today - picking it up a 11am - yippee.

hi everyone i'm home. still feeling a bit woozy from all the meds, i don't get on very well with codeine and morphine, but down to paracetemol this morning. at least i slept well. thanks for all your good wishes, so much apprecitated. nice to have this sucker out....but not the overwhelming sense of relief i'd like to have since i'm now in the 10 day wait to find out what we're dealing with.

updating did you get your results? so sorry you're getting migraines. i get them - have all my life, with pain, but they're utterly debilitating and the aura makes me feel so sick. mine are hormonal. wonder if yours could be linked. does BC mess with your hormones? i've been having some inter-period spotting the last few months (which obviously i'm convinced now is cancer of somewhere down there....although pre this diagnosis put it down to pcos which i have had in the past).

hope everyone else feeling bright(er) this morning.

Thank you everybody for your reassurances. I think it hit me hard because I had allowed my expectations to be set at only needing radiotherapy.

I can't decide whether I'm most upset about the prospect of losing my hair or losing my ability to think / concentrate.

Dh tried to reassure me last night by pointing out that I wasn't the principal wage earner. I don't think he realised what life was like for me when we were on one wage. He stressed about not having enough money - I didn't dare spend any money on anything, not even coffee with friends. I sat in the house day after day, wrapped up as much as possible to avoid putting the heating on and scouring the internet looking for a job. It took 6 long months. I need to work and I'm scared of losing my job. I don't think it will happen, and I know I'm not being rational, nevertheless ... So good luck Betsy!

Just been catching up - decided not to read on cancer before going to bed as I'm just too anxious.

tiny, I'm so sorry to hear about your shoulder. I hope you get a PET scan if that could be useful. Tough not to know. (((Hugs)))

I have counselling - some terrible events of the last few years made me seek one out a year or so ago. I think it is particularly useful for people who don't open up easily, like me. A good counsellor will never judge you and they are there just for you - if you look after others that feels quite unusual. I usually cry my heart out and it sort of discharges the grief and the fear and helps me carry on. I never realised before that just talking about stuff to someone who really hears what you are saying can help. It took me a while to relax into it though.

goodness, good to have you back!

updating, I am starting FEC-T next week and looking forward to lots of good advice from everyone here. I believe them that it is doable.

Chemo timing means that I will miss my year 11 parents evening - second thing of ds1's that I've missed. Really fed up about that. Did year 9 - ds2 - parents evening last night. Lots of friends. Half of whom know. Oh so complicated. And no, ds1 didn't revise for his chemistry mock GCSE, but we did have the worse Chrismas ever.

updating, have your work been good? Are you going to feel under pressure to go in during chemo?

Updating - I do know how you feel when you have expectations and they are changed. Fwiw, the hair loss, while quite traumatic to start with, I found I got used to it quickly. If you want a wig (I tend to when out), they are really good. I have an acquaintance who is a hairdresser - she couldn't tell.
Goodness and harriet - good your ops are done.
Foofoo - if you don't mind me asking, what is your bmi? Mine is high so I am trying to lose weight!
First tax fine, no drugs to take today - no steroids cos of it being weekly, yay! A friend is taking the boys to school, I need to do ironing!!

oh so sorry updating somehow my updates didn't all come through and I didn't see your results. i'm so sorry you need chemo but i know you'll get through it like everyone else on here does. this f**cking process seems full of waiting, results, shock, recovery then over again. sending you hugs and support.

Updating have you spoken to your employer about the treatment change? I've been pretty candid with mine as I wanted them to know they need to have someone cover my work whilst I am away. The more notice I can give the easier it is to plan everything. Having said that I keep getting very mixed messages regarding the chemo I will be having. One consultant said I'd need one course and will be in hospital nearly 6 weeks and another said I'd need two courses and will be in hospital 2 x 4 weeks.

The hardest thing I find is the timing and trying to make the hospital understand that I do need a bit of notice for when I am supposed to start my treatment. Yesterday they told me that I would have a Hickman line put in one week and then go back for chemo one or two weeks after that or may be later as things regularly get cancelled. They also said that I may have to come in and wait on a day ward in the hope a bed does come free and go home at the end of the day if no bed materialises. I'm rather that it seems to be so chaotic. The only time I have had any experience of in patient NHS care is when I had ds and that had it's own time frame that wasn't dictated by the hospital.

The nursing staff on the chemo unit said they are not in charge of bed allocation, which seems all very odd.

Goodness glad to know that everything is going okay and fingers crossed you are pain free and not too stir crazy in hospital.

Tiny I had counselling after an awful incident I went through a few years ago. I found it really useful to be able to talk to someone I knew could deal with what I told them, wouldn't be affected by it and who would help me cope with the future. As a result of that I was able to go on and lead a normal life which I know hasn't been the case for others affected in the same incident who didn't get support.

Hi Pickle, it does sound dreadfully chaotic. I hope they're just giving you the worse case scenario. Surely if you're going to be in for a longer stay, they can assign a bed in advance!

I have given my boss, office manager and HR person a basic outline of what I'm expecting to happen although I'm waiting for confirmation of dates from the hospital today. My boss is being very supportive so far. His son had cancer a few years ago so he knows what to expect.

You might have a point about the hormones affecting the migraines Harriet. I did tell the oncologist about them but he didn't follow up. Now I'm wondering if they started about the same time as the cells turned cancerous. Previously I thought maybe I was pre-menopausal but I don't think that is the case.

Dh was having problems remembering the name of the treatment so I suggested he think of it as Fecking Terrible. Good luck next week Wren!

Hope the pain is under control Harriet and Goodness and anyone else who is suffering!