*TAMOXIGANG* All the fours...44!

[GoodbyeRubyTuesday]

Apologies for the bingo reference, couldn't think of a witty title but the other thread is very nearly full.

In honour of our new thread I have piled extra apple pudding on the trolley so tuck in :)

Sorry to sound flippant .
But surely I can't be the only one who pictures , when seeing the phrase "bmx" on here , mad mumsnetters riding around on stunt bikes

Topsy. I was thinking similar. Trust you to say it! Betsy on a bike.. How was the school trip? Did you behave?!

Tiny, that sounds grim. I was horribly sick too and ended up on a drip. Emend works for most people. Definitely ask for that next time and odds are it will work.

Betsy, do you know that area, or is it just what was available? Sounds lovely regardless.

kitkat I didn't start Tamoxifen for a couple of months after chemo finished. I think they like to leave it until you have had a chance to recover from treatment. I also didn't put weight on for a couple of years but then it did creep on around my middle and it is hard to shift but nothing a bit of self discipline wouldn't sort out

I wonder how much of that is menopause anyway. Quite a few friends have the same problem just as a result of having a menopause anyway in their 40s and 50s. My menopause symptoms are worse since the end of Tamoxifen.

And like smee I felt menopause and Tamoxifen were very much good things. Those NHS stats are probably behind the trial results, from what I gather from Dr Geek their understanding is moving further towards understanding the importance of hormone treatment all the time. One of my ER+ friends who only had a grade 1 tumour but didn't go into menopause on Tamoxifen and having got alarmed by another friend's local recurrence, just had an elective oompherectomy, following in the footsteps of that friend. Now they would have been given it originally with their tumour profile so didn't struggle to convince them.

Good points, Pigeon. I haven't a clue if it was chemo or Tamoxifen which pushed me to menopause. Equally I haven't a clue whether it's menopause or tamoxifen which makes weight harder to shift. In a way though it doesn't matter. All that matters is it keeping bastard cancer at bay.

Trice, MAS and any others with lung thingies, google is such rubbish, even if seen accidentally. 82% of people with standard lung mets are alive and well after four years now, thanks to the new therapies and tailoring. And the only reason I say four years is because the new therapies have mostly only been going for four years, so they don't have longer data.

So piffle to whatever google rubbish you happened upon. Carry on, men!

And hello all

Hi all,

Have had appt with surgeon this afternoon, and feeling very down again . Could do with some thoughts/opinions.....

I have mx booked for 30th Oct and will be having immediate recon with implant. I asked about the possible complication of needing rads and she said that if there was a significant possibility of that, then they wouldn't be going ahead with the recon, So far so good...

I think Mrs Surgeon would really prefer it if I didn't ask any questions about next steps and just do what she does which is to concentrate on the immediate task in hand. So, being a bit irritating, I asked about what she would expect to find in the breast tissue. She said that, given the extent of the DCIS, which is 9cm (first time I have heard that - presumably the extent of the spread, but may also include calcification) she thinks it likely that there will be some invasive BC and I may need chemo as a result. I've had 2 biopsies of the breast which have shown DCIS with no microinvasion, but obviously they are just small samples.

I naively thought that clear lymph nodes meant that chemo was unlikely, so am confused and worried again. Mrs Surgeon started to speculate re sizes and gradings but then closed down the conversation as she said I was 'getting stressed', and that I should just concentrate on the forthcoming surgery until we have all the facts.

Today she was accompanied by a student nurse and a registrar, so lovely bcn wasn't in the room - too much of a crowd I think. She came in after and asked if I was ok, so I started a bit of a conversation about the above and she started saying some reassuring things but then the registrar came in with the consent forms for the op and my convo with the bcn came to an end.

I was then swabbed for MSRA by student nurse, and left to go and get DS from school.

Feel in a right tizz again now and as if I'm back in unknown territory when for a few precious days I've has a bit of certainty. I feel as if the convo threw up all sorts of questions and no answers. Maybe I should just not have asked.

I feel as if I jump through one hoop and then I'm presented with another that I didn't know existed. I just don't understand where I am really. Feel like crying...

Amber - are you around? Can you enlighten me at all? Not really sure what I'm asking though tbh..

Marshy She will be preparing you for the worst, we have seen this with another person who visited the thread diagnosed with DCIS, There may be invasive breast cancer, given there is a reasonably large patch of it, it may not have shown on the mammogram or biopsy, if there is any it may be of a grade where they judge you need chemo (we have people on here who had lower grade invasive tumours who didn't have chemo). They have to prepare you for the worst, it is their job and how they are trained. I am sure Amber will have stats but you can have DCIS with no invasion. The problem is that until they operate they can't tell for sure.

Marshy sorry you're upset they should have taken the time to discuss it all with you it's true though that till everything is analysed they won't know exactly what's there and what the treatment needs to be so perhaps they thought it wasn't right to speculate. I know clear nodes doesn't necessarily mean no chemo though
Have a cuppa x

Lol at bmx I hadn't even thought of that !

It's funny that apart from for health reasons the weight thing doesn't bother me at all but the hair thing really really does

hmmm marshy - sounds like you have the reverse situation of me.

My biopsy 'caught' a cancerous part of the lump - the rest was actually DCIS but we didn't know that until after mx so I was treated as if I had IDC of 6cm. In fact the lump was 6cm and IDC was 1.3cm and the rest was DCIS - I have pondered on how things would have gone if the biopsy got DCIS but realise the treatment would have been the same but in a different order. I went from worst case scenario and worked backwards - so had a big shock initially.

So in your case - yes, there may be a bit of IBC hidding away but even so with clear nodes you do not necesarily need chemo. It depends on the grade and size and type etc. - onc will then make a recommendation - ultiatley it will be your choice.
With Rads it is unlikely you will need them - I think in your case you would only need them if they can't get a good enough margin in mx - eg. if the lump is near the chest wall or something. Also if any IBC is not near the edge of the DCIS they are less concerned. I really don't think they would do an immediate reconstruction if they weren't fairly confident.

I struggled to understand how with all the test, scans, biopsies they don't actually know what's what until they get the pathology back but I think you have no choice but to hang in there and wait for the full results.

thanks pigeons - chemo is scheduled to finish at end of Nov and hopefully surgery at the start of Jan so I will put forward a case not to start tamoxifen immediately. It would be nice to get back to a 'normal' baseline for a short while at least!!

marshy ditto what pigeons said - the bottom line is they can do as many biopsies and and scans as they like but until they actually get in there and send the stuff off to the path lab they can never be 100% sure what they will find and doctors always feel obliged to mention worst case scenario just in case you are the one case this year/month that it applies to.

smee - I used to live in Newcastle so used to go for lots of days out and weekends away all around the north pennines area - love it round there, really wild and not as touristy as the Lakes or Yorkshire dales. I remember well last time we were up in that area - we went as a family of three and came back (although not realising it at the time ) as a family of three and one on the way! (Zero chance of a repeat event I hasten to add!)

I'll get me bmx bike...

kitkat - forgot to say I've been told I'll start tamoxifen two weeks after surgery - apparently they like you up and about again before you start due to tamoxifen raising your DVT risk. (which is already raised due to chemo and cancer...)

oh and just realised I x-posted kitkat and malt as well, saying the same thing to marshy, I really am slow today...!

ah righto Betsy - sounds like a plan then

Marshy, what Pigeons said.
If it's not in the nodes, then it's not anywhere else either. So your survival odds even if it is cancer are still excellent. But they can't say so without official results to look at. Keep calm and drink tea. Or as the case may be. I will be.

Not been well today. Got a lot of work done anyway from home.

Great minds eh !
I'm hoping I don't have another fight on my hands for my node clearance op, last chemo is 7 th November and they said it would be a few weeks after that really hope I don't have the same problems as when I started chemo.

Marshy - listen to these wise women! Nothing is certain and who knows what will come back from pathology.
Good news about the bike Betsy!
Been having an up and down day today. Told some people including DSs' school - DS1 is in P2 and DS2 in nursery class.
Also had a call fron bcn to go over the plan.
Stupidly read some recent studies on prognosis for TNBC which was a bit daft.
I already know it's not good - large Grade 3 tumours in both breasts and in nodes - but the Prof was sounding very positive yesterday.
We'll see what happens when I meet onc on Thursday.

Hi all,

Thanks for your prompt responses. I really do appreciate it, especially when you all have so much to be thinking about yourselves. Sorry you haven't been well amber. I have been in a bit of a panic and trying not to show it to DS, so it's comforting to be able to come here for support and information.

I find appts with the surgeon difficult. She has an abrupt manner and is always in a rush. Today she was multi-tasking by asking me if I had any questions about the mx and recon whilst she had a needle stuck in my armpit and 2 staff looking on. I struggled to put a coherent sentence together, let alone listen to what she replied.

I know she can't be definite without the facts, but somehow the bcn manages to be reassuring by saying things like 'well, it could be xxx but in your circumstances it's more likely to be xxx, although I can't guarantee that' and that sort of puts things in context and in perspective, iykwim.

I left a wobbly voicemail for bcn thinking she would get it tomorrow and reply then. She rang back at 6pm but I missed the call, so hopefully I will speak to her tomorrow and arrange to meet up and sort myself out a bit.

Amber I remember you saying to someone else (think it might have been Handbags when she was worrying about nerve involvement) that cancer spreads through lymph and blood. Any thoughts as to where I might stand on the blood thing?

Kitkat I have been following your debate re the rads with interest. Hope you get a decision soon, as you seem like a planner. I am too, and find all the 'deal with the square you are on' hugely difficult. I'm hoping that my surgeon's willingness (eagerness, actually) to go ahead with the implant means rads are unlikely for me, but don't really know.

Thanks to all again, especially to those having dips and wobbles xx

Marshy, haven't anything much to add, but in case it helps, I had a relatively small tumour (1.7cm), but amidst lot of low and intermediate grade DCIS. That was near the skin surface, so rads was essential for me. So I think a lot depends on grade, plus where it is. We're all so different that it's impossible to know for you, but here's hoping you soon have a plan. Waiting's the worst!

weebarra I know two TNBC women who were similarly freaked at your stage and several years on are both absolutely fine, no recurrence, etc, etc. Put down Dr Google, and trust the team. Life's ahead.

Thank you all for your kind words. I am over my pity party now. I knew I shouldn't Google but I wanted to know what my operation will involve. As I said, I am actually feeling good and will be even better after op.

I bought dd a nice penguin playmobile for her birthday which she will love.

Good news on bmx and shrinky lump Betsy. You are nearly over the worst bit.

Marshy, try not to worry (easier said than done), I hope your bcn is helpful tomorrow. You are lucky to have one - I have never seen one at my hospital.

Trice when's your op ? I don't have a bcn either it doesn't seem fair it should be the same everywhere
Enjoyed gbbo and pleased with the result, daren't say incase someone has recorded it !
Hope everyone sleeps well

Marshy, the lymph and blood systems are the same drainage network. Cancer that starts in the breast would break free and could only travel through either the lymph system or through that AND the blood supply. The lymph nodes would spot the cancer straight away, as that's their job. They tell the body's immune system that there's intruders and kick it into action. It is very rare for it to just get out in the blood and miss out being in the lymph nodes. So the lymph system is an accurate thingy for telling people if it's possibly elsewhere. And good for stopping anything in the blood from developing further, by telling the immune system to whack it. There are no absolute certainties, but finding it elsewhere but not in the nodes is about the same odds as waking up to find the Pope showering in your en suite. If that helps.

Amber thanks for the lung stats , that was very helpful for me to read .
I don't tend to read facts on line , and you have a great gift for being able to extract the bits I need/want to hear from all the rest of the gobbledygook !

I am completely shagged out !
DDs teacher thought it was a great idea to have me shepherd 23 kids up 8 flights of stairs to the art exhibition !
And seeing as DD doesn't actually know about my lung secondaries , I couldn't even yell "I do have lung cancer you know" at him

Chaperoning another trip tomorrow .
This one is to see a play , so hopefully lots of sitting down involved ...

Hope you all get a good nights sleep , I'm in bed already

Amber as I don't have an ensuite that's not gonna happen!

Love you amber