Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Betsy - you're planning to go back to work the same day as me . And congrats on being all done - it's very wierd isn't it.

My private healthcare nurse rang me at lunch time to talk me through the 5 year monitoring that is available.

I've had a more exciting day then I expected - my dressing (on implant boob) started to ooze brown stuff so I had a panic (as I am being vigilant not to get an infection) - my BCN said the dressing had probably got wet so not new blood or anything scary. My options were to change the dessing myself ; go into the hosptial or get someone else to change it. Anyway I managed to get the nurse at my GPs to do it and all is well - just too mch time spent staning in the shower I think - phew!!

Thanks betsy I know all we can do is wait, and like you say, that's the worst part really
I'm glad to hear you're all done, may you continue to stay free of the bastard and get your life back to 'normal'
Treat yourself to some nice things, you deserve it

Congratulations on finishing your rads Betsy! I hope life returns to normal quickly!

Great news on finishing Betsy - be lovely to get back to 'normal'

I work in a school so have been off since diagnosed and miss it so much (worse as DS2 goes there so keep seeing 'my' children saying "We miss you Mrs Wine, come back soon"!)

I work in a school too wine, so I know that feeling. I've popped in a few times and my 1-2-1 is always "when are you coming back Mrs Boop, I miss you." Aw. It's not the school my children go to so at least I don't get it every day like you!

kitkat - did you have options for the monitoring? if so do you know what you prefer?

Congratulations Betsy. I'm really falling behind you as I don't see my consultant about rads for another fortnight.

wow betsy and kitkat well done! it's so weird being right at the start of this journey. i can't even imagine how i'll feel at the end. What is the monitoring from now on? how do you feel?

have you all had full body MRIs? or CTs or whatever you get? I've not bee offered anything yet but of course suddenly convinced every twinge i feel is another gremlin somewhere else. I see Dr tomorrow and will request one but wondering if you do or don't usually get one so i can be prepared (on NHS) and if you do, when usually that happens.

harriet, I only got offered a CT. and bone scan when my initial results were not as good as hoped after my lumpectomy - I had positive nodes in the sentinel node biopsy and a larger than expected lump.

Betsy - no i don't know what yet - she just said she wanted me to konw that I would be covered for 5 years of monitoring - of whatever the surgeon and oncologist recommended - she said it varies lot but probably 3 month then annual checks. The reason she was telling me is that apparently you can't usually claim for monitoring but this is a case where you can (for 5 years).

harriet - I had MRI of both breasts and full body CT right after the inital diagnosis. The MRI was as my tumour did not show on ultrasound or mammogram so they needed to check it out and the CT was 'protocol' as the lump was large - they said they needed to get a baseline picture (which is code for to see if has spread) before treatment. I didn't get a bone scan which a lot of others seem to have had.
Then I got SNB biopsy after that.

I had an MRI of breasts (uncomfortable) plus CT scan and another scan in the nuclear medicine department - which may have been a PET/CT scan. I was then found to have bone cancer as well as breast cancer, though which came first wasn't clear.
When I had my MRI I asked if people had whole body MRIs and was told that it would take far too long to get any meaningful results. The breast MRI took around 50 minutes, so a full body scan would take a day - of not moving in a claustrophobic hole with strange noises!

harriet - I had a bone scan, chest x-ray and abdominal ultrasound which was 'protocol' at my hospital as the lump was large - same as Kitkat they said they needed to get a baseline picture (which was the same code for to see if has spread!) I also had breast MRIs done as my cancer is was can't get used to past tense lobular so it doesn't always show up fully on mammo or u/s. For follow-up now I think it's a quarterly prod and poke by onc for the first year, then six-monthly in year 2, then annual for as long as I'm on tamoxifen or similar. No scans or anything unless he or I are concerned about anything (and no mammo for me as no boobs!) I'll also see rads onc once more for post rads check at 6 weeks and I'm seeing surgeon in APril to discuss the op to tidy up my scar whichwill be in 6ish months (so I guess that means I'm not quite done, but I'm not counting it!)

lily - fingers crossed you get to skip rads, but if you do need it trust me after tax it will be a walk in the park! How are your nails, PN, Hair doing?

Betsy - from what everyone says, the rads are tolerable apart from having to turn up every day!
Nails are now growing out, but am still covering them with varnish ( currently a kingfisher colour). NP still there - but has never been that bad and it seems to be slightly better now. Hair - not yet at any styling stage, but decent coverage. Unfortunately it is a real mixture of grey/dark/white. As I've had my hair coloured for the past ten years it is a bit of a shock. So I shall have to make the big decision in a few months ... Admit my age or keep colouring! And I am back to tweezer use elsewhere on the face!
How is your hair? Is it rather wispy and dry as mine is?

Congrats Betsy on completing rads and being at the end of treatment!!!

Harriet I haven't had any scans, well apart from the ct yesterday but that was for rads planning. My hospital only does them if you have a lot of nodes involved, more than 4 I think
Noticed today looking at my rads appointments that I have a day off in the middle ! Not sure if it's intentional or not I will ask when I start !
Lily glad your hair is returning it's frustratingly slow though isn't it, wish I was one of those girls worlds heads where you turn a button and the hair grows !

Betsy WELL DONE on finishing Rads I am so pleased for you. Xxxxxx

betsy congrats on finishing rads. Woo hoo

harriet I have had 3 MRI s (mine didn't show up well on mammo)

Borrowed 20 scarves off a friend today and have mastered the art of exotic hair wraps! Also had a sudden burst of energy And went to the gym.

Hello - a helpful mumsnetter suggested I post on here as I may get an answer. So here goes:

My best friend has been told that she has invasive breast cancer with high grade DCIS picked up by a routine mammogram. Apparently treatment is cutting out the relevant parts and then radiotherapy. I have tried to look up information but am confused as I can only find information that relates to non-invasive breast cancer with DCIS. Please can someone explain this to me or point me in the right direction of explanations. Is this in fact 2 different types of cancer? I am petrified for her and feel so sick. What is the prognosis. Thanks in advance.

Hi Worried - you are correct that DCIS is termed non-invasive but you can get Invasive cancer mixed in with it. So I think you are describing an area with a mixture of the two - that is quite common (I had it) but I'm guessing that the IDC area must be relativley small if she is avoiding chemo.
The only treatment for DCIS is surgery but the prognosis for that is excellent and a small area of IDC would also have a very very good prognosis.

try these 2 links:
www.macmillan.org.uk/Cancerinformation/Cancertypes/BreastDCIS/DCIS.aspx
www.macmillan.org.uk/Cancerinformation/Cancertypes/Breast/Breastcancer.aspx
but don't be tempted to do a lot of googling - stick to respected organisations.

What is IDC? Sorry to be thick.

Invasive Ductal Breast Cancer - the most common invasive type I believe and I think what you would likely get if you had DCIS.

worried - kitkat is referring to invasive ductal carcinoma (the most common type of breast cancer). I agree with everything she said :)

x-post kitkat, our broadband is on a go slow tonight...

waves at Betsy

and worried do feel free to invite your friend along to join us. Unfortunately (as we'd rather no-one had to join) we have lots of 'newbies' at the moment - we're a friendly bunch and it's a nice active thread. We're very good at hand-holding.

Thanks for the invite. Unlikely though as she is not too young and not very technical. It will be me here instead I think.

Few more techie questions please: Am I right in thinking that the chances are what she has is invasive ductal carcinoma (referred to above) even though I'm not sure her paperwork says this (although I suspect the fact that it does not say anything different and this is the most common suggests it is).

Please correct me if I am wrong but I suppose the fact that it was high-grade DCIS is now irrelevant on the basis that he has already become invasive? or is high grade worse then low or moderate DCIS even once it has become invasive?

Thanks.