23rd **TAMOXIFEN** thread

[MaryAnnSingleton]

oh my !

Marks spot

1st step I can see how worrying it is as dx has changed. But it's not that sneaky as Surgeon tested for it and found it . Ok it's not the news you thought /hoped for but it's not mixed. It also shows to me they are careful so are unlikely to Miss things. And missed things are often the reason for more tricky outcomes.

It must be hard though to be waiting again esp with the delay and other issues you have had.

Re chemo I think the range of experience and reaction on here is quite big so hope someone can help.

hey 1step - agree with gig Sorry for brevity but must dash xx

Hi 1ststep sorry results weren't what you hoped for but much better that your surgeon was thorough. Others are much more knowledgeable than me on chemo as I have only had my first session. Whilst it wasn't pleasant it actually wasn't as bad as I thought. Hugs to you.

Thanks for starting us off again, MAS.

1step, of course you can come back. Was wondering what had happened to you. You must feel wrecked after mastectomy and then to find out it's in nodes too is one hell of a shock. Not sure if this will make you feel any better, but it was in mine too, so we're similar. I do get the fear of spread, but if your nodes looked normal, I'd say you've a v.good chance it's just reached the bottom layer. If so, it's still very treatable. I'm two years post diagnosis now and honestly fine. Ask any and all questions. Weep, wail and be angry too. We all understand. Huge hugs from me xx

Thanks MAS

1step - I'm glad you have had your ops now, and hopefully recovering well from them. It's always scary waiting for results especially when they change what they say - the same thing happened to me and it did throw me a bit. But as everyone says it sounds as if they are being thorough. I used to think of the lymph nodes as a sort of filter to stop rubbish (i.e. cancer cells) getting to the rest of your body, and they generally do a pretty good job.

And when it has spread to the nodes they will offer you chemo as an extra back up - try not to think in terms of 'I've got to have chemo, so it must be bad' it's a scary idea, but if they offer it, its because they think they can do a good job of zapping the cancer with it.

There's several people going through chemo at the moment on here - so I'm sure they'll be able to give you lots of tips and support (mine was 3 years ago, so I'm probably out of touch )

gracie - they will monitor your heart very regularly on herceptin, and test before they start to give a base level, they are interested more in changes to your base level rather what that level actually is

Just jumping in to mark my place .

marks spot. well done for bringing the trolley, smee.

Waves to 1step, all that waiting must have been awful.

must dash, still lots to do.

I don't know how you do it mas, well done keeping the thread going.

Marking place too!

Will post more later- DS demanding tea. .

Hugs and waves to all x x

Thanks everyone for your wise words. Didn't really appreciate what the 'paranoia box' was all about before, but I do now. I'm going to do my best to put a lid on it until I know exactly what I'm dealing with and try to stop worrying because at the end of the day it's not going to change anything xx

Istep, I react dodgily to a heck of a lot of drugs but more or less sailed through chemo last year (one of the tough 4 x 4 regimes). It's so individual. Meantime, shift along a bit on that paranoia box and let us do some hand holding/shoulder-hugging/ -supplying for you.

Just back from Onc. I'm completely off herceptin now. The portacath will come out. She's had a good feel and says everything seems really normal to her (phew). So, here I am post-treatment and now in the six monthly checkup phase for the next 4 1/2 years. Oh my!

I'm so sorry to barge in

Just a quick message for 1step, as was shamelessly lurking (to see how my fellow -distractionexpert- Wordsmith Topsy was doing the other day.

1step, it may not help, but in case: I have a good pal who has had lobular BC. Hers didn't show in nodes originally, but did in sentinel node test, and she had treatment and is still fine and dandy now (10 years later: we were TTC together, she had a dd1 just before I did). I think, from what I remember, that if BC doesn't show up in scans of the nodes its because there is hardly any of it there yet - and if there isn't much there, there is very little likelihood of it being anywhere else, iyswim. So what Kurri says makes perfect sense

Butting-in over, as you were

distractionexpert

That's all right elibean plenty of FBs for all

So many of you struggling with fitting all the stuff you have to deal with AND everyday life.Hats off to you all.
Don't know if I'm the right person to guide mil because really,deep down,I just want her to do what I know I'd do and get them results as quickly as possible.Because why not?She is usually like this too.
But I can't say that.
My appointment tomorrow still makes my stomach turn over at the thought but hopefully the calcifications will not have changed and all will be well.Back to yearly family history clinic appointments.
waving to everyone

will be thinking of you tomorrow 14k
Waves to elibean and dashes off again as am trying to draw gig !

Phew then Amber. That sounds like a sane decision. Must feel mighty good to have made it. And HOORAY for no signs of any recurrence. Excellent. Am jumping around for you.

Waving to Elibean too. come say hi whenever. Very nice of you to post that reassurance.

14k, really good luck tomorrow. We'll be thinking of you. xx

Waving to all others. Sunny here, am in shock.

Amber - so pleased your onc appointment went well, that must be a relief for you and goes to prove the treatment works. It's reassuring to hear of your experience of chemo, it's good to know someone else who has managed it despite not tolerating other meds too well.

Elibean - thanks so much for the reassurance, I appreciate it. I'm going to hold on to that idea and hope for the best. Also great to hear your friend is doing so well all this time later too.

Am sure I'll feel more optimistic once I've got over the op and can regain some sort of normality. Doesn't take me long to get cabin fever, but I'm going to hospital tomorrow to have the last drain removed so at least I'll get out of the house for a bit!

Kurri - bcn phoned me today, she said similar. She says the cancer has now been removed from the area and any further treatment is for insurance. I like your thinking about the lymph nodes as it's a much more positive way to frame it.

14k - wishing you good luck for tomorrow.

Also, good luck smee for Thursday's op, hope everything goes well.

That's good news amber

FBs for all. Am trying to stay calm about tomorrow as May get my scan results (my dad and dh been pep talking me) but just seeing the oncologist scares me.

And cos 1st might need it here is my anti paranoia list (with updates):

Kylie
Olivia newton john
Cynthia nixon
Sheryl crow
Sam Taylor wood
Giuliana rancic
Anastasia
Jennifer Saunders
Other types:
Sharon Osborne
Rod Stewart
Fran drescher
Steve parry (Olympic swimmer)
Mark James
Claire balding
Sean o Neil (journalist )
Lance Armstrong
Danny baker
Jordan (!!)

People in real life - 10
Non tamoxifen mumsnet - 15

1step I've run the odds with yours having a load of lymph nodes involved, just to see what happens. Odds of success 92%, it says, with the latest generation treatment. Now that's a guesstime of course since we don't have your actual notes here but it's not a bad starting point still.

and fbs aplenty for those nervously awaiting their tests etc...

I think we need a big group (((((hug)))))
I know it's un-mumsnetty , but we go through a lot of shit on this board !

So all of you , yes even those of you lurking . And especially those who don't like being touched !
Gather round , nice and close .
1 , 2 , 3 - ((((((((((hugs))))))))))

Ok , that's better , as you were ...

(((((((hugs))))))) also, topsy. And thanks . Couldn't wish for finer companions on life's journey on the various boards of Mumsnet.

That was nice

I love ambers stats. Also Isnt it amazing that even on this thread we can see how much practices are evolving in just a few years?

Need to get remote off dh as he is watching something grim about fat v. Think people.