Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Sounds good news Harriet though as you know they won't know for sure till they take it out and analyse it. The signs are good though :) I had a lumpectomy and sentinel node biopsy, I don't remember it hurting when the dye goes in, funny thing is my boob is still a bit blue and I had it done in June ! Mine walk to school by themselves now but I would have been able to do the school run after a few days, it's not too bad at all, the worst thing was feeling groggy from the GA for a couple of days

Betsy must be lovely not to have to go for rads today

I was at the checkout after sainsburys when I had a call from ds school to say he's not feeling well so he's flaked out on the sofa now :(

Hi Malt - sorry your DS is not feeling well - you can sit on the sofa together for the rest of the day [grain]

I've just booked to get my hair cut - at 2pm today - the plan is to cut off all the long fluffy bits. I'll be left with something like a no2 I guess but hopefully looking more like a style - yikes!!!

Harriett - that sounds like a good plan. It's a shame things are still inconclusive but it does still look positive.
I didn't had a lumpectomy but did have a SNB - went in friday pm and home saturday lunchtime. I was a bit stiff but no real pain - as far as i remember I did everything as usual except for driving. Oh and I had the dye injected in the Op so wasn't aware of it.

Thanks kitkat think he'll be ok after a good rest
Good luck with the hair, I'm having the same on Wednesday so be interesting to see how you get on. Dd thinks I'll be disappointed as it will be shorter but like you it's all different lengths so I think it will look better and then be able to grow into a style. I'm never having a bob again though it will always remind me of my wig !

Hi all

Feeling much better thanks. Saw BCN this morning, lots of tears and then lots of laughing. She really is a great lady!

Still achy and tired, but the pain is gone. I can safely say that this week was my worst week, both physically and emotionally so far. I'm hoping I can be more prepared next time. Just having decent painkillers and being able to sleep, will help loads.

malt hope your son feels better soon. Xx

kitkat good luck with the hair cut! They always say a trim helps with growth!! Hopefully you'll have a style you love again soon. Xx

Hi to everyone else. Sorry I haven't had a chance to read the thread properly. But promise to read through after I've had lunch and a nap! Xx

Really you are lucky to have a great BCN I'm glad you had a good meet up with her :) also glad that you are feeling better.

Keep meaning to say to Betsy, you mentioned going to a spa, I kind of thought that with no jacuzzis, steam room, sauna etc they would be out of the picture now ?

Harriet, I was up and about pretty much instantly after the lumpectomy/SNB stuff. Couldn't feel the injection into the nipple apart from a sensation of pressure. But was very entertained by several weeks of a blue boob afterwards :-D
Really, very glad to hear you are feeling much better. Hopefully you will have a decent weekend ahead of you.

malt - I was never that keen on steam rooms, sauna etc, (they tend to make me feel a bit faint) whereas DH loves them, so I think the plan is I'll be in the pool with the kids and he'll be in there! . I think jacuzzis are okay so long as they aren't too hot? (provided you don't mind the swirling germ fest of course!) I think it's hot tubs that are the other "not advisable"?

I see ! I used to love a nice dip in a jacuzzi. Wonder if I could go in and stick my arm in the air !!

Though that may not work with a sauna !

Hi ladies, I've just had call from breast surgeon's secretary. He wants to see me to discuss genetic referral implications. She also said that my mri had gone for double reviewing (can't remember exact phrase) and they hadn't had results yet.

She'd give me no idea what to expect and whilst I know it's not an urgent appointment (less reason to worry) it's still scaring me, especially as my sister was told at every stage that there was nothing to worry about.

Lil oh that's no fun. If you're given no information, you're just left with speculation which always spirals out of control in my view. Not urgent is definitely good, though. Hang on to that.

Hi everyone

Had the first of my weekly Tax's this morning and it just so lovely not to be feeling sick now (as I was after the FECs). I could walk and pick DS2 up from school and his face when he saw me was lovely.

Trying not to overdo it but hopefully wont be spending the whole weekend in bed!

Hope everyone has a good weekend.

marshy - sorry I never answered your qu damn chemo brain strikes again Yes I'm doing a phased return, but it will be quite short I think as I only work five mornings anyway, so I can always rest in the afternoon.

lil - this waiting period is the worst bit, you get tiny little snippets of info and before you know it your brain has run away with itself imagining all sorts. Hang in there.

Thanks wren and betsy. I'm hanging onto the fact it's not an immediate appointment (but still quietly panicking)!

Hi Harriet! Glad to hear things are moving along. I'm feeling fine mostly and was sitting up and chatting cheerfully (and coherently, I think!) with children on the same evening as the op. I'm still a little bit sore but only taking pain killers at bedtime (and I didn't bother last night). I tend to spend the day acting like nothing has happened, then get to the middle of the evening and feel tired and at the end of my tether. I hope/expect that that will get better over the next few days.

For the SNB, I was given 4 injections on the side of the breast / armpit - nothing near the nipple! It did sting a bit but nothing serious. I was told to massage the breast to make sure that the product drained into the lymph nodes and I went back for the scan maybe 2 hours later. I'm intrigued to hear of blue boobs - mine is a Halloween orange from the isobetadine but no hint of blue (thankfully! The combination would be gruesome! ) I can however still see the cross where they marked the location of the sentinel node.

Actually maybe we are not talking about the same procedure; I had the sentinel nodes located by injection of something radioactive followed by a scan and confirmed with a Geiger counter (if they still call them that!). 2 sentinel nodes were then removed for analysis during the lumpectomy. I therefore have 2 incisions, c. 3cm and c. 4cm long.

As for driving, the surgeon told me that I could drive by the end of the week (op was on Monday). I didn't drive today but I will be tomorrow and I'm expecting it will be fine, especially as I was operated on my left side and (given that I'm driving in Europe) it is my right hand that I need for the gear lever! I'm back on car pool duty on Monday.

Updating sounds a v similar thing though mine was blue ! I didn't think anything was injected into the nipple but thought maybe I'd remembered it wrong. And I didn't have a scan afterwards unless they did it when I was under.

Wine glad you are feeling ok :)

Lil we will hold your hand while you wait

Kitkat your hair looks good are you pleased with it ? Are you ditching the wig yet ?

Fajita Friday here later with some fizzy pink. Ds just ate his packed lunch and is feeling a bit better :)

Malt - yes I am pleased. Hairdresser said although it was short it is very thick - think that's what makes me think I could bare it. I've already ditched the wig at home but need a nice hat before I can do the same out and about as it is too cold for my poor head!

oh great you're feelign so well updating, well done. And yes think i get geiger and dye....will be delighted if it's nowhere near my nipple. that bit sounds grim!

Dear All

I hope that you have all had good days. I have spent a lot of today trying to get up to speed and have a few more questions if that is ok:

Further up the post kitkat1967 said that if you have high-grade DCIS you're likely to have grade 3 invasive breast cancer. Why is this the case? I believe my friend has grade 2 (though she has has no lymph node biopsy yet and I believe she has been told (this may lose a bit in translation) that she has tiny specs of calcium which are both malignant and non malignant but which have cancer cells between them (do you think this described the IBC or DCIS?)

I said in my original post that she had been told she would not need chemo. However one helpline today said that until extent of cancer seen via surgery and lymph nodes biopsied then it is not possible to say if chemo is necessary so I am not sure what she has been told is correct?

The helpline said that when lymph nodes biopsied and their condition is ascertained this may affect treatment regime and it may be decided to remove them. Would it therefore be more logical to take these out prior to planned surgery rather then take them out after having been biopsied and then have to do more surgery after biopsy? As a lay person to me it seems logical to do the lymph biopsy first to determine the extent of surgery but I am sure I'm missing something. Please can anyone explain?

Final question about staging and grading. She has grade 2 and this has been described as early to her. If there are only 3 stages how is grade 2 early? is it not medium? Am I confused between grade and stage and in fact it cannot be staged until after surgery? I am confused how she could be told stage 2 if she has not had any surgery yet so I guess they must be talking grade and not stages at all?

We are in east london/essex. I am not convinced local major hospital is a great place (it is often in news for tragic incidents (though not in cancer area)). Are there any centres of excellence people think it maybe better to try to get transferred to (and how do we go about this?) and if so please can anyone let me know where they are/any particular consultant to try to get under?

Thanks very much.

Worried I'm surprised they've said no chemo as I would have thought they'd say maybe or maybe not till they know exactly what they're dealing with. I was told right from the start I would need it due to my age 41, and at that point they thought it was grade 2 and didn't know if I had any nodes involved.

They only take the nodes out if the sentinel node contained cancer as if it didn't its unlikely the others would and node removal can lead to further complications in the future. So it's best to keep them if you can. I guess if they did the lymph biopsy before surgery it would delay things even more.

I'm not sure why they describe grade 2 as early, I guess it is earlier than grade 3. Mine changed from 2 to 3 after they took the lump out and analysed it.

Hi Worried - lymph nodes can be biopsied by taking a sample (so with a needle) or (more commonly I think) done by removing a few of the nodes at the start of the chain (know as sentinel nodes) and testing these in a lab. If these are positive then you go ahead and remove the other nodes and if they are clear the other nodes can be left. Removing all the nodes can lead to other quite serious issues so it is not done if not necessary.
try this link www.macmillan.org.uk/Cancerinformation/Cancertypes/Breast/Treatingbreastcancer/Surgery/Checkingthelymphnodes.aspx

Staging is how much the cancer has spread and is staged as 0 through to 4.
Grading is how agressive the cancer is - 1 through to 3.
You get both a grade and stage but this info will not all be available until the tests have been completed.
here you go: www.macmillan.org.uk/Cancerinformation/Cancertypes/Breast/Symptomsdiagnosis/Stagingandgrading.aspx

Your question about does high-grade DCIS go with grade 3 IDC - from what I have read this is usual but I guess there will be exceptions.

And finally I wouldn't have thought that they would know if she needed chemo until after the lymph node results so her team may have been giving her their view at the moment and of course they will have many more facts available to them (and they are Drs) . If you are older you are less likely to have chemo - for various reasons. My DM is in her 70s and like many of her friends has had BC treated only by surgery and Rads.

If you are a close friend and are concerned maybe you could ask her if she would like you to go with her to her appointments. There is a lot to take in in the early days and many people like to have a second pair of ears with them .

Malt - I didn't remember you getting your grade changed - I guess that was back in the befuddled early days for me .

Yes I'd heard it was common so it wasn't really a shock. I was thinking the other day grade 3 seems more common than 2 ?

Malt mine also changed from grade 2 at biopsy to grade 3 once lump was removed. The upgrade terrified me.

Stage is the important one. Grade isn't.
Stage is how far it's spread in the body.
Grade is a technical thing for the team. Each grade responds best to a particular set of treatments. Most people under age 50 have Grade 3, which means it's faster growing...but also greedy and drinks up chemotherapy as 'food' and cops it more quickly. So faster to grow, easier to kill. (Generalising).