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Tamoxigang -the 39th thread ***

996 replies

MaryAnnSingleton · 04/07/2013 10:53

cooee ! we're over here - just in case the current thread hit 1000 without our noticing Grin Bring the trolley !

OP posts:
malteserzz · 09/07/2013 21:35

Kitkat bet you are noticing every bit of hair that comes out though, it may not be as much as you think
How's everyone this evening ? I'm just chilling, drinking tea and watching dh do the ironing !

kitkat1967 · 09/07/2013 21:45

we're chilling too - DCs are in the garden thowing a rugby ball over the fence with next doors DD (20) and having a great time - I love it when school is out and we don't have to fuss about bed times Smile. DS in particular is a natural night owl plus the weather fab at this time - it's lovely and cool.

kitkat1967 · 09/07/2013 21:45

Malt - I'm embarrassed to say that my Mum did my ironing when she came round earlier (I was working so did not notice until it was all done).

malteserzz · 09/07/2013 22:08

It is lovely and cool now :) can't wait till next week when my 2 are off school, no more early mornings !
My mum often does my ironing
Wonder if I'll get an appointment tomorrow if not I will ring again, bcn was meant to phone me back today but never did I do feel a bit abandoned

BetsyBoop · 09/07/2013 22:21

malt you definitely need to phone, I can't believe you are still waiting :(

I must admit I'm very impressed by how on the ball my hospital seem to be, even my BCN rang the day after my first chemo, just to see how I was doing (Have I mentioned I her?! Grin) It should be consistently good for everyone across the NHS though :(

I forgot to say that the oncologist is so happy with me that I won't see him again until the morning of my next but one chemo (should be 8/8) unless anything changes before then. He'll continue that pattern if things keep going well. So that means only one trip to the hospital every cycle which is great (I can get my bloods done at the GP the day before).

BetsyBoop · 09/07/2013 22:37

kitkat - don't be downhearted - your onc wasn't expecting much to happen. Mine was expecting change and would have had to look for a plan B if that hadn't happened. We just have to trust that they know what they are doing.

From my obsessive research it could also be that your tumour is becoming less dense with cancer cells and/or now contain lots of dead cancer cells - that won't change its size but it would show as a change on MRI scan.

malteserzz · 09/07/2013 22:38

That's great Betsy Smile
I know, it's nearly 3 weeks since I got my results and was told I need chemo and still no date. They told me to chase after a couple of weeks if i hadnt heard anything as if they expected me to have to Hmm

kitkat1967 · 09/07/2013 22:47

Malt - I can't believe you have heard nothing when they said they would call you today. I know it's been said before but once you get your start date you really can plan round the 'chemo days' and get yourself a reasonable summer. I was looking today at booking a local'ish holiday so at least the kids get a change a scene and I confident I can work out a good time to go (not too far away0.

Betsy - is your onc confident he can shrink your tumour(s) then? But your still having a mx aren't you?

I'm still getting to grips with how everyone is different - even though I know you I have both E+ tumours there must be other differences. As well as being very unagressive he said mine was very strongly E+ - I'm not really sure which of those mean it won't shrink much with chemo - or maybe it is a combination thing. My onc is a man of few words and gives very little away!!

BetsyBoop · 09/07/2013 22:57

kitkat I think the less agressive the tumour is then the less it will respond to chemo. Chemo works by killing off rapidly dividing cells, so if your tumour is a bit of a lazy bugger Grin it won't have as many rapidly dividing cells as a more aggressive tumour would have - therefore less cells get killed off by the chemo.

Also I think the general rule is that on average triple negative tumours have the best response to chemo (which is a good job really as obviously tamoxifen/herceptin won't work) whereas for ER+/PR+ tumours the tamoxifen is the really important bit, similarly herceptin for the HER+ ones.

Oh dear I'm becoming a bit of a cancer geek aren't I? Shock I did say I was a detail person...

kitkat1967 · 09/07/2013 22:59

Betsy - I see a new career path for you when this is all fnished as indeed my onc did initially say that after 2 or 3 cycles he would get the MRI re-done to see what is happening.

BetsyBoop · 09/07/2013 23:01

PS - yes my onc was hoping for some shrinkage, but not expecting it to go completely. The biopsy didn't manage to determine the grading of mine, so I guess they are assuming it's an "average" grade 2, whereas it sounds like yours is the lowest end of grade 1 (grade 1 = least aggressive, grade 3 = most agressive) . Still a definitely mx as it's multifocal (there are three tumours) as too great a risk of recurrence otherwise.

kitkat1967 · 09/07/2013 23:07

Ah well - looks like chop it all off and stick with Tamoxifen will become plan A for me. The surgeon would like it to shrink a bit though - to help him with his 'clear margins'!!

Betsy - The oncs phrase was 'it must have been there for many years just throwing off the occassional cell'.
Mind you i would like to understand the figures he used as he said it was 5% and that 20% or less was unagressive but my (small'ish) amount of googling has not found any reference to percentages Confused only grades. What I don't get is that they said it was grade 2 immediately but then the 5% bit came with the full histology so they must be different things/measures.

smee · 09/07/2013 23:30

Not sure if this helps, but I had two quite small highly aggressive tumours, so 1.7cm and 0.6. But lots of low and intermediate grade DCIS. The aggressive tumours were grade 3, but due to the DCIS, the whole breast was deemed 'unstable' so mastectomy was essential. The v low grade DCIS was was basically mutating into high grade, all fed by strong hormones. In other words I'm guessing I was like you kitkat but then it suddenly went bonkers. So it's amazing with you that they got it in the pre-bonkers phase (get me with the medical lingo) Grin they don't know why some women live with DCIS live forever with no problems, but with others it becomes malignant. All quite interesting really, though bloody annoying if you're one of the few.

kitkat1967 · 09/07/2013 23:39

smee thanks for that info. Maybe I'll never get to know any more details - I personally think it only recently became a hard lump but would agree that the lump itself had probably been there for a very long time. Also I still think it is wierd that a 6cm lump is not visible on mammogram or ultrasound.
Still as long as they get rid I'll be happy Smile.

Anyway - bedtime for me I thnk.

BetsyBoop · 10/07/2013 05:49

*kitkat^ my guess (and it is only a guess) from looking at this is that
95% is tumor area forming glandular/tubular structures (ie only 5% of it is not indicating a very unaggressive tumour)
And
80% Nuclei small with little increase in size in comparison with normal breast epithelial cells, regular outlines, uniform nuclear chromatin , little variation in size (ie only 20% with a cell structure to score a score 2/3 again = unaggressive)

MaryAnnSingleton · 10/07/2013 08:06

trying again to catch up but failing ! I have seen hnd's post on fb about horrid,pesky hole - poor love- it must be so frustrating that it's not healing.
Had a lovely but long day out with T and Dh to Exbury Gardens on the Beaulieu River in the New forest... bloody hot but lots of shady trees- walked a lot and went on the lovely steam train. T had fun running through the sprinklers. Totally exhausted afterwards.
T's recital this evening !

OP posts:
malteserzz · 10/07/2013 08:11

Sounds lovely Mas walking through trees just what you need in this weather. I got a bit pink yesterday so will be avoiding the sun today
Good luck to T in his recital Smile

HerNextDoorAt21 · 10/07/2013 08:17

Thanks for all your messages ladies, I have picked myself up a little bit and looking forward to our holiday

gigs I love the way you say it is a pisser .... that is exactly what I think of it all !

smee I have a reduction lined up for the old mahoosive boob then once that is settled I will get lipo-sculpturing on the new (LD flap) boob to boost it with fat from my tummy to make it more natural looking. I decided to wiat until at least after Christmas to get some time for my body to recover and to be dressing free for a wee while. My surgeon is a star and has told me as soon as i want it done, she will do it - I am sure she is yearning to get an excellent before and after photo of this project !

I can confirm that topsy did in fact get dressed yesterday - she had to as she was taking delivery of my new dishwasher while I was at work (the old one just died) - the delivery men would have got a shock if she had turned up in her pants. She helped me unwrap it, made me a cuppa and then I plumbed it in with topsy watching the tumbleweeds nodding whilst I told her about PTFE tape and jubilee clips etc etc. She also told me off about doing too much and had a stern finger wagging look about her

Ah well, at work already, quite a lot to do before I finish tomorrow - have a great day everyone !

Gigondas · 10/07/2013 09:05

That will mean no sign of topsy for a bit after all that effort hnd.
Kitkat I obsessively hair watched then it all came out in a rush so had to get it shaved off.
malt dont be shy about ringing as its beyond crap not to ring you back and as for the letter Hmm.
Mas your walk sounds lovely - how was the recital?

I got bad attack of canceritis about back ache(I know have discuss it with onc , she was relaxed but I am still scarred by the fact missed tumours twice before). It really does feel muscular (as pain relates to what I do) but I have no faith in my body now and it's getting me down as cant really leave the house as can barely walk .

Kurri so lovely to hear from you xxxx

Got dressing change so have to go into hospital for that - I suppose the know what they are doing but it's a pita.

Moan over -Brew?

Apprentice interview episode tonight is cheering me up Grin.

MaryAnnSingleton · 10/07/2013 09:48

hope dressing change is ok gig but pesky to have to get dressed
T's recital this evening - 'Who is Sylvia' - fingers crossed.

love to all for a soothing day x

OP posts:
MaryAnnSingleton · 10/07/2013 09:48

oh and yay for Apprentice !! my favourite episode Grin

OP posts:
EarthMotherImNot · 10/07/2013 10:02

I'm home, yeayyyyyy. Hi everyone, come on, who missed me, huh,huh.

After my second round of once weekly chemo I woke the next morning feeling dreadful and with a temp. As urged by the chemo unit I spoke to my GP who requested an ambulance. Dh helped me dress and got me in my wheelchair. The ambulance people arrived and began a shouting match with Dh, sayng I was not an ambulance case because I was dressed and in a chair. We pointed out the info book they had giving us which stated any temp change was a must be seen asap.

By this time I was in tears and begging Dh to get me back indoors. The ambulance folk decided, generously I could go to the A & E unit.

That was 2 weeks ago. It would appear the chemo didn't suit me but I also had a water infection and a chest/lung infection.

They got my sats stabalized as well as sending me home with drugs and an oxygen tank. I have to see onc doc again next Monday or earlier if needed but for the time being alls well. Hope everyone has faired better than IHmm

BetsyBoop · 10/07/2013 10:07

EMIN!!! we have most definitely missed you!

Sounds like you have had a pretty rough time of it :(
Hope things continue to improve.

BetsyBoop · 10/07/2013 10:09

gigs I was so excited at seeing EMIN I missed your post - hope the dressing change goes without any hitches. Sending good healing vibes.

Gigondas · 10/07/2013 10:25

Thanks betsy but am most excited about emin being back. Am so sorry you had a horrid time with infections but glad you are home. Hope that can have some peace and a lovely rest at home.