Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Congratulations on finishing your rads Betsy!
Saw surgeon and onc tonight. All good - lumps are much reduced. Slight change of plan though, onc wants me to have weekly Paclitaxel rather than Docetaxel - partly because I've had awful diarrhoea on FEC and she's worried it will be worse on Tax, and also because my blood counts have been lower than she'd like. So, 12 weekly sessions. Eeek. Worried about childcare, asking my mum to help out every week, rather than three weekly. Has anyone else been on weekly Tax? Head is spinning a wee bit, and feel a little wobbly. I do like a plan!

hmm... re the DCIS being high-grade - I'd say that is largely irrelevant now as it will be wiped out and be gone.

However high-grade DCIS is usually linked to grade 3 IDC (IDC is graded 1 to 3 with grade 1 being low grade) - so IF she has IDC as well I'd guess it is grade 3.
But I must stress if she is having only Rads (assuming she does not have a medical condition precluding chemo) then the area must be small and the team must be happy that it is limited to the breast tissue - which is all really good news.

ooo Weebara - me - I did weekly Pacltiaxel. I wrote a big post about it a couple of days ago but I got it as my onc thought i would tolerate it better. I suspect you'll find it easier than Docetaxel - espcially to start with but the last few weeks are tough. I was able to do all my childcare as i wasn't really wiped out but of course my kids were at school and I had my chemo at home. And yes you shouldn't get low blood counts.

are there any particularly good breast cancer forums out there (i.e. not too nutty and more middle of the road?) - other than this one of course?

Worried the Breast Cancer Care forums seem to be pretty middle of the road and seem to have threads for every type of breast cancer and every stage of treatment.
But no tea/ drinks trolley like here!

Foo foo yay to the scarves and the gym
Worried sorry about your friend but like Kitkat said if she's not having chemo that's good news. There is the breast cancer care forum too and there's lots of info on that site you might find useful

Posted at the same time as lily, great minds eh !

thanks all for the feedback on scans. getting my questions in gear for consultant tomorrow.

bizarrely i've got some of my results a day early as was phoned by genetics and they told me i'm HER2+, oestrogen -ve.

Anyone else like me? I see this means it's likely quite aggressive but that i'll be treated with herceptin? not sure if this is good or bad or neither.....

aggressive seems scary. But i guess i'm still 2cm. feels like it must be growing by the second.....

any insight before tomorrow helpful....

ok I now hear lymph nodes not been tested yet so I assume this means grading can not be finalised. Does that sound right? and therefore treatment can not be?
Also what are the factors as to whether chemo is given or not in normal circumstances? Grading? size? as a lay person I would think err on the safe side and give chemo always but obviosuly this is not how it is done.

Hi, sorry to just jump on here and ask questions but I was wondering how the cancer was picked up kitkat and Betsy if it wasn't on a mammo or US? I have ongoing breast pain in my left side only since Oct '12. The consultant wasn't concerned and told me to wait until I had finished BF and go back for a mammo and US which I did the following August and he said all fine, take EPO to help with it as I have a fibrous breast. My left breast is regularly painful, never ever the right side and it is lumpier. They also did a FNA of a swollen gland under my arm and it was ok.

Sorry for the waffle, I an just worried that even although the mammo and US were clear they might have missed something. I have a genetic condition which makes me susceptible to lipomas (have loads) not sure if that is relevant.

Hope you dont mind me asking, thanks x

Hi Theonlyone - I went to the GP due to pain in my breast (which I ignored for about 6 months a I had heard pain is not likely to be serious) and when I did investigate I found a lump (large). GP referred me to the breast clinic where I had an exam from the consultant who ordered mammo, US and biopsy. After that was done i was told it 100% non-cancerous - verdict delivered by 'one of the team' as maamo and US both showed nothing. When back 1 week later and got cancer diagnosis from the consultant - he said he knew from the initial exam and I shoud never have been told it was OK.

I really don't think anything would be just dismissed these days - the drs always err on the side of caution. Even though I got told the wrong info the tests were done.

worried - the current trend is not to over-treat so a lot of care is taken to get the treatment right. Chemo is horrible and can leave long-lasting side effects. You can rest assured that your friend will get the most appropriate treatment. It sounds like she is in the difficult phase of knowing she has cancer but not yet getting the full results - we've all been through a few weeks of tests and waiting but it is necessary. When she has the nodes tested depends on the team.

Harriet - your results do mean your cancer is likely to be more agressive but it also means it is likley to respond well to chemo. As Amber reminds us, these days if you follow all the treatment the prognosis is very similar to less-agressive types. And yes you will get Herceptin but not Tamoxifen.

Thanks kitkat, i have had three breast consultations and exams from a top notch consultant who has reassured me in everyway he can but its just this niggling discomfort that bothers me. Its not pain in that I need to take painkillers but just always in the same spot. My boobs have also changed a lot after BF and there is quite a lot of loose skin (am 41). Am going to see GP about my bizarre 14 day long periods over much longer than normal cycle and will mention my breast concerns again to her. Maybe I am perimenopausal and the niggling is,because of that.

Thanks again for replying, I really appreciate it

Theonly -I had a hard area i could feel rather than a lump as such (very typical for lobular cancer as it tends to grow in sheets and/or strings rather than forming a lump) They could definitely see something on mammo and particularly u/s for me (after u/s I was told it was most probably cancer) but couldn't get a clear picture of the extent (Again common with lobular as it doesn't image well) , hence the MRI for the definitive picture. As it turned out I had a multifocal tumour (three separate "centres")

Thanks betsy, I really appreciate your reply x. Over the years I seem to have become miss WCS (worse case scenario) which isn't good for me. They suspected I and both my DC had Nf1 last year and I had to wait 6 months for the genetic tests to be done. I think that's what has set me off this constant worrying.

Thanks again, I will get the GP to have another check x

Harriet - Thank you for sharing the reasons for your surgery decision the other day, it is something I need to really start thinking about. Prior to starting chemo, which is the first part of my treatment, I had an MRI, CT and bone scan. This was to find out if the cancer had spread to anywhere else - they already knew it was in my lymph nodes as I had a FNA at the same time as the breast biopsy. Good Luck at your appointment tomorrow. PS: My Oncologist was raving about Herceptin, I was a bit gutted that I couldn't have it, he made it sound so good!

Malt - Just seen you have a bit of wait before starting rads - boo! I am sure you just want to get on with it now.

Betsy - I was just going to wish you Good Luck with your final rads appointment, but you have already finished! Congratulations, you deserve a large glass of .

Wee - Well done on the shrinkage front - it is very satisfying to know those cancer cells are being obliterated.

Good evening to everyone else.

I feel so drained from meeting up with friends over the past couple of days - will up-date when I have more energy.

worried, just to add that the grade will stay the same; it's an indication of what the cancer cells look like/ how they behave. High grade means faster growing but also very responsive to treatment. The nodes will help inform about how far it has spread - the stage.

Hello everyone. Sorry I've not posted (you're probably quite relieved. Lol).
Things have become very quiet since the last of the diagnostic tests, pre ops, visits to consultants and surgeons were made. Until Wednesday it's been almost daily with visits, tests and calls
Now it's quiet.
But my DS is ensuring that it's stressful and that I'm distracted while waiting. Holy cow, he's doing a fantastic job of that!

goodness rememeber children can't always express their worries and concerns. So they act up! He's probably picking up on your stress, as well as his dad being away. Sit and have a chat with him, maybe take him out for some special you and him time. I'm not saying you should reward bad behaviour, but I think it sounds like he's needs time/help to understand what's happening.

Some children aren't affected by stuff like this, others are VERY sensitive and pick up on stresses around them! Don't get too upset with him, look at the bigger picture, he's a little boy who's going through a hard time. He just needs to find a way of dealing with his emotions! Plus LOTS of mummy hugs xxxxxx

I take it you are feeling better today Really? You don't work Friday's do you? If so I hope you are posting from bed .
Wise words from you above - I wish you had been my nanny!!!

Morning all
Quick hello from me on my day off. Have completed 3 weeks back at work now and it's going ok, though have been very tired - have fallen asleep on the sofa every night this week! Have another 3 weeks before back up to full time and I think im going to need that.

Sorry to see so many newbies here. Early days are tough.

Love to all

aah that's better, our broadband seems to have recovered from its go slow yesterday, I gave up trying to post...

Thank you for all the good wishes. :) It's still a bit surreal this morning, woke up thinking "what time is my rads today, oh I don't need to go any more!" Have been to see my lovely GP about a fit note to return to work - he basically said "what would you like me to write?" . So I've got the "paperwork" that work needed sorting so I can return on 10/2. Also work want me to see the OH Dr (quite what he is going to be able to add I'm not sure, I think it's more covering their backsides) and the appointment has come through for that on 10/2 as well. I could do without yet another medical appointment, but hey ho...

Goodness - really had some very wise words - I agree children's stress can come out in strange ways, we have noticed a few things with DD (DS on the other hand has breezed through the whole thing).

really - I hope you are over the worst of the tax truck now?

harriet - hope your appointment goes well - I found it really helpful to write everything down (your questions and the answers) as otherwise I struggled to remember everything...

to everyone else.

Betsy are

Betsy are you

Phone has the hiccups!

I was asking if you are planning a graduated return to work Betsy? I would highly recommend it. I saw occi health before returning ( standard NHS procedure) and they set the parameters for the return schedule, in discussion with me obvs.

Congrats on completing treatment btw!

hi everyone
back from appointment and my plans have changed!
my second biopsy is back and it still is showing DCIS ie no evidence of invasivity, despite being HER2+
Dr has encouraged me to do this in a 2 step: step 1, lumpectomy and sentinal node biopsy and then IF we discover that it is invasive or spread to other parts of breast, no margins, bad nodes etc If my emotional self feels the need for a mastectomy I can have one then.
My imaging still looks like invasive cancer so honestly not much has changed but he seemed to feel more inclined to believe the biopsy this time than last.

So my op is now on Wednesday. New questions! Particularly to Updating - how do you feel after lumpectomy and sentinal node biopsy? how long till you're up to doing the school run?
and when they inject tye into your nipple (urk!) can you feel it??

thanks for your support as ever xx