**Tamoxigang thread 51**... no more sangria, but maybe some mulled wine!

[MarthaCostello]

Hello all,

The old thread has nearly run out so I hope no one minds me making a new one. And am I allowed to mention the Big C... Christmas?! our last thread was started in July so I reckon this one might take us into December.

In honour of that, I will lay out some mulled wine, mince pies and I have wrapped myself in tinsel.

A warm welcome to jomidmum, but sorry you've had to join us. No one wants to be in this club, but this thread is a rather nice place to be. Wishing you a speedy recovery from your op, and hoping the pain eases soon.

Massive hugs to beccajoh

A big yippee for Marshy, what utterly fantastic news.

Sitting on the paranoia box for ConsiderablyBiggerBuns, I hope your MRI results are good - when will you hear?

Waving and sending love to everyone else.

I wonder if seeing as we are on a new thread, it might be worth just giving a bit of history for new posters? I will put mine anyway, and then others can if they want to. I am coming up to two years since my bowel cancer diagnosis (grade 2, stage 3c, T2N2M0R0). I had major bowel surgery and six months of chemo.

Hello from me. I'm fairly recently diagnosed and will be happy to share anything I learn with you to help you out. Let us know how you get on and remember you are stronger than you think you are.

Hello all

Been a bit of a stranger due to deciding change email addresses and sorting out computer passwords which meant I completely Horlicks-ed up being able to sign into lots of things, Mumsnet included. Finally fixed today...must remember not to do something so complex with chemo-brain...

But I have been lurking in the meantime and sending my virtual thoughts to you all..

I'm in the fog after my third FEC at the moment and desperate to be out the other side and feeling better for a bit before the Tax and 1st Herceptin fun just before Christmas. I had a suggestion to use to some nail bed balm sourced online from Cancernet to stop my nails falling out - has anyone any experience of it actually working?

Am hoping everyone is doing as best as they can with Christmas approaching - My DS has his reception Nativity play on Wednesday, his renditions of Away in a Manger and Little Jesus Sweetly Sleep have me in tears already. Oh dear....

I did manage to go out "commando" head wise for the first time in the smart microbrewery restaurant opposite the hospital on Friday night with DH to celebrate my end of FEC and his nearly end of Movember (he was looking increasingly like Basil Fawlty - not a good look). It was strangely liberating to be out for the evening with no hair...I never thought I'd be brave enough - its amazing what you can achieve with this cancer business...

Shame I can't manage to tie a good scarf for another look like some of you .... elporto

Thanks for saying hi. Will get to know you all a bit more over the coming weeks and months no doubt. Don't want to say too much about yesterday atm. Spent most of last night reading the leaflets they gave me as I couldn't sleep anyhow.
Am still here though, and will lurk a while for now.

, Gilly? A lot to take in, eh?

Morning everyone

My angels good to see you and hope the chemo fog clears soon ! Well done on going out au natural, bet the next time you do it it won't seem so scary. Hope the nativity goes well, I would cry too !

Gilly, big hug you must be in shock I remember those early days so well. We're here when you need us please ask anything nothing is daft or off limits

Hi Gilly. We will be here when you're ready, just take it at your own pace. I saw your post on the other thread and see you have to decide how and when to tell your family. Just don't struggle along by yourself for too long. Sending you big hugs.

Myangels, a nativity gets me every time. Hope it goes really well with the obligatory mistake to make everyone smile.

Myangels, hope the fog is clearing and you are able to enjoy your ds nativity tomorrow. Well done on going commando, whilst I'm firmly of the view I have nothing to feel embarrassed about and that it's everyone else's problem if they can't cope with my bald head, I haven't braved a public place without my scarf yet. Having said that I did briefly of taking it off in the office once when I got hot from laughing too much but there were only a couple of people there.

Gilly, welcome aboard. So sorry you have had to join us. Lurk away and post again when you feel ready. There are some really lovely ladies here who can provide some amazing support.

So I saw the oncologist today ahead of chemo #7 but because of my painful fingers and toes despite the reduced dose last time, the decision has been taken to stop chemo....... The team are pleased with the way the tumour has responded so far and I'm 2 injections down of my year of herceptin so they are happy for me to miss the last 2 cycles. Of course I am over the moon to 'never' have chemo again but it feels so strange knowing that it's finished.

I have to go tomorrow for 1 last ultrasound and next week they'll discuss me at the MDT meeting and then next appt will be with the surgeon (who is the not the one I met back in the summer as he's just retired :-( ) to discuss surgery

So I wonder if I will now have surgery before Christmas??

Welcome Gilly (if that's the right word), do keep posting, we have all been there and are here for support and hugs whenever you need them.

Minty - no more chemo! This is SUCH good news, that it's gone so well and you are spared cycles 7&8 I am overjoyed for you, I know your SEs have been hard to bear so I hope this means you can relax for a while and enjoy the run up to Xmas with your DH & DD.

I had my first docetaxol today, had a pretty quick allergic reaction within the first 5 mins so the whole thing got delayed and took ages to do. Grrr. They gave me piriton which sent me to sleep for most of it, and I felt very odd when I woke up and glad DH was there to help me wobble home. All in all in was a bit of a rubbish day and I have had a little cry this evening, I fucking hate doing this, I don't want to do it, I wish I didn't have to, I am SO angry about it.

Anyway, I wanted to give a special wave to MyAngels we met IRL at a breast cancer care event a few weeks ago, only after a couple of did we realise we were both mumsnetters! Well, we were one of the final ones propping up the bar so that was a pretty good indication! Welcome back to the thread and well done on going out sans wig, I bet you looked awesome!

Ooh elporto I'm sending a big hug. I have my first Docetaxol on the 18th Dec, together with a full day on Herceptin watch, and am dreading it. Was the allergic reaction nasty? Hope you are feeling better v v soon. Sending a large (unfortunately virtual) bottle of that Prosecco I chickened out of the other week to you, for you to save till you feel like it.

I'm reaching the totally fed up with chemo stage now, too - I wish it was over NOW (so thrilled for mintyneb).

Off for some rice pudding for comfort.....

Evening all.

Angels- hope fog lifts quickly and you enjoyed the nativity. I wore very dark nail varnish during the tax as recommended by my BCN. I did manage to keep my nails, although after the last tax they did detach about half way down. I kept them really short and although full of ridges they are now growing out.

Minty- good news about end of chemo. They seem to do surgery about six weeks after the last chemo so not sure whether you would have it before Christmas.

Elporto- sorry you had a bad reaction today. You are totally allowed to be angry. It is total pants this cancer thing!! I hope your SE are minimal.

Went to work for a couple of hours on mon which I really enjoyed. Felt like life could be a bit normal again. I did have to go a bit early as they changed my Herceptin time. I had to wait an hour to find out I couldn't have it as the doctor wasn't happy with my Echo. The oncologist phoned today to say my ejection fraction had gone back down again (60% down to 47%!!). She said I was unlikely to have it before Christmas now so that means I will miss two- have had four. Been referred back to cardiologist but he's on annual leave. Now worried about my heart and the fact that I may not be able to continue with Herceptin. I want to be able to throw everything at this disease. Does anybody know anything about stopping/restarting it? Was having a positive week too!

Minty are you having chemo then op? I'm considering that, but could have the op first then chemo they said. The consultant said there was no difference in the overall outcome for patients. The oncologist saw me briefly and seemed to be pushing for the op first, but my nurse and consultant said I didn't have too if it wasn't what I wanted to do. Were you given a choice over which way to do it?

Anyone have any advice on which way they chose and why (assuming you were even given the option) or if there's anything I might not have thought about which may swing which way I go.

gilly, I was diagnosed with a 3-4cm grade 3 HER2+ tumour and was told I had to have chemo and surgery, the question was which way round. because the tumour was big (when I lay down you could see a huge lump sticking up and it had distorted the shape of my breast when standing up) they said if I had surgery first it would be mastectomy and reconstruction.

If I had chemo first they could actually monitor how successful the drugs were by seeing if the tumour shrunk. If the tumour shrank then if the cancer had spread anywhere else in my body, they would know that it too would be zapped. Once chemo was complete I would have what's left of the lump removed and lymph node biopsies.

although the decision was mine they recommended chemo first. probably because it was a fast growing and fast spreading tumour. I liked the fact that they could see it shrinking and I knew for certain that the chemo was working (although there were no guarantees of course)

I had a bone scan and ct scan and the ultrasound and to date they are confident the cancer hasn't spread but I will only know for sure when I have surgery.

that's a downside to having chemo first without lymph biopsies is that you just don't know......

It's a difficult decision, but I let myself be guided by my surgeon who I have to believe has access to all the stats for my type of cancer.

hopefully others on here will be able to give you some advice too. Good luck

Hi Gilly, just to show how differently things work in different NHS trusts... I was diagnosed on the same day as minty but was advised to have surgery first and then chemo.

I had all the scans, tests, lymph node biopsy etc first so they knew that the cancer had not metastasised. I then had a full mastectomy on the affected side and lymph node clearance. Around 6 weeks later I started chemo which in the words of my nurse is to 'mop up' any stray cells as my lymph nodes were involved and my margins are terrible. I will then have radio and tamoxifen.

For me, I found it helpful psychologically to know that the tumour had gone right from the start, but everyone is different and I would really listen to your team and see what they recommend for your type of cancer.

My angels and elporto glad you got to meet

Minty no more chemo yay !

Elporto big hug to you, I had a reaction on my 2nd tax it was scary, 3rd one was fine though as they gave me piriton first

Speedy sorry you've got these heart worries too :( I didn't have herceptin so don't know much about it

Gilly I wasn't given the choice, they just said to have a lumpectomy then chemo but then I had to have node removal after that as my sentinel node was affected. If you want to talk it over with someone the Macmillan helpline is good. It seems to be those with a larger lump they like to have chemo first to shrink it and make surgery easier

hi
this thread was suggested to me recently.
I have recently had breast surgery (debridement) for mastitis, not breast feeding related.
and now need a mammogram.
stitches out a few days ago, 2 weeks post op.
So, will the mammogram hurt my wound?

tia

Gilly, are you able to tell us about your particular lump? Size, type, etc - what do you know so far? Then we may be able to give you some more detailed info about whether to do chemo or surgery first, and what the differences may be. Some defintiely do chemo first, because then you get info about what chemo does to the lump. Later on, that info can be handy. But it could be that yours is a type of BC that doesn't respond in that way...

R4roger, I'd ring the mammogram unit and explain. They may want to assess you first and then decide.

good idea Amber, thanks

Gilly I had chemo first as my oncologist explained my type (one lump triple negative) would benefit from it being that way round. He said that if it didn't respond to one type of drug then they would move onto another more quickly. I found this helped as I could see I was making progress but as Amber said it can depend on the size and type. I didn't really get a choice though.

Amber- do you know anything about stopping/starting or not getting the full dose of Herceptin? I have only had 4.

Speedy, I know a bit, aye. Though of course I am not a Doc. They know 6 months is as good as a year. I only had four too. My onc was happyish with that.

Good afternoon,

Yippee for end of chemo minty

Hugs for the rest of you.

On the question of chemo first, I was scheduled to have surgery first but MRI showed tumour bigger than at first thought so I had chemo first.
But as someone else mentioned are they sure if you have any node involvement which means a different type of chemo.

They can tell sometimes from MRI but mine didn't show until I had surgery, so I went back and had more chemo. I have strongly suggested to my team that SNB is done before chemo and its something they are considering but the downside of this is that it might mean a delay to starting chemo ..... so its a hard decision.

I think there is not a wrong or right answer but the one that you feel is right for you.

Not entirely sure but it's an invasive ductal carcinoma, eoestrogen positive and herceptin 2 negative (so it says in the note book they gave me). They didn't say how big but I can tell from how it looks and feels it is not small. It's stage 3 and aggressive. I think that was the highest stage they said it could be. You all probably have a better idea of what that all means than I do.

It has gone into the lymph nodes too. That side will be a mastectomy and lymph removal. The other side is small, they nearly didn't spot it (50mm). They put a staple in so they can find it again. I had to have more biopsys on that one on monday as it came back breast tissue; they think they missed it rather than it being normal. So no actual result on that yet. They will remove that as a lump though they said.

Will need chemo, radiology, hormone treatment of some kind to supress the eoestrogen (will bring early menopause they said). I think they mentioned the tamoxi stuff, but can't recall for certain.

I have got a bone and body scan on Monday to see if it has gone anywhere else.

Was told if I just wanted it out with no reconstruction at this point they could do it on the 17th. I think I would have the reconstruction at the same time if I was to have it. They didn't give a date for that yet, but I guess that would mean being in hospital over xmas.

Being a single parent, I don't think my ds would cope very well with that. Plus we are meant to be going away for a family weekend away as a surprise for his birthday in mid Jan. Am thinking I could cope with all that better if I go chemo first, but will have to miss it all if I have the op first. Of course I have no real idea how I will react to the chemo so may have to cancel xmas, panto tickets and his birthday in January either way!

I know it's probably silly to worry about such things. But ds does panic about something happening to me and how he would be left all on his own.

Hi Gilly
Sorry you have had to join us
Stage 3 is the highest stage if your cancer is only in the breast, but it is frequently only picked up at this stage. If it spreads elsewhere it would be Stage 4 (which I have).
My chemo was every three weeks, so that meant one week when I didn't feel too good but the second and third weeks weren't too bad. We went away every third weekend (i.e. weekend preceding next chemo) and it wasn't a problem ... presuming you are staying in the UK.
Although treatment isn't fun, next Christmas you should be back to normal (new-normal) life.

Hi Gilly, good to hear fom you again. I hope you're getting a bit of sleep now. It sounds like you haven't had all your tests done yet which makes decision making a bit more tricky. With luck your situation won't change and what you know now is what you have to deal with.

The timing is lousy, although there never is a good time. I'm not sure hospitals will want too many patients in over Christmas so don't despair yet. You may be surprised at how you cope after surgery. It may not be necessary to cancel all your plans. Elporto famously went to Australia two weeks after similar surgery in the summer.

But please, make your decisions with a view to your long term health, not because of immediate plans you have. My daughter was doing her AS exams just after I was diagnosed and I really do understand your desire to protect your son, but just now you must come first. You will not be totally out of action, you just have to plan to be active on your good days. I told the school too, so they could keep an eye on her and a couple of teachers have been particularly kind when she got upset.

Gilly, we have VERY similar situations. I too am stage 3 on one side with extensive lymph node involvement, although nothing in the other breast.

I'm sorry to hear it's in your lymph too, but hopefully you'll soon have a picture of how many nodes are involved which will make things clearer. Like lots of us here, I too had the CT scan, bone scan, numerous biopsies, mammograms, MRIs etc. before getting a full picture. There is a hell of a lot to get through and it can be bewildering and very stressful to get through. Do you have a good breast care nurse assigned to you yet who can help you through it? Or a friend who can come and hold your hand and take notes in all the various meetings?

I had full mastectomy with immediate reconstruction within about 2 weeks of diagnosis which was fast. I was 2 nights in hospital, and some people only stay in for one. And as others have said, I did (famously!) then hop on a plane to Australia with husband and 2 DC for an amazing month-long holiday. I went to A&E in Oz quite a bit just for my own peace of mind and to have a seroma drained around the wound, but it was fine. And if you are staying in the UK then a trip shouldn't be an issue, though I would talk to your team if you are thinking of driving. I would recommend talking to your surgeon about your plans as mine moved things around quite a bit to get me on that flight and they may take pity on you and schedule your surgery at a good time for you if they can, particularly with you being a single parent.

If you decide to do chemo first then it's a bit unpredictable how you will feel. I have been more or less OK on mine so far but I know others have suffered badly with nausea and other things so it's hard to say, although your 3rd week is usually completely fine.

Do please PM me if you'd like, I am really struck by how similar our diagnoses are and I am here, 5 months on, to let you know that it is doable, not least down to the awesome amazing ladies on this thread. and love to you, you sound like you are holding it together so very very well

Thanks Amber. Reassuring to know you had four lots.

Gilly- it's so much information to take in at first. Waiting for all the tests to get an overall picture is not easy but hopefully you won't have to wait too long. I had a bilateral mastectomy with recon a few weeks ago and stayed in for two nights but a friend has had a mastectomy and was a day case (because of radiotherapy she has to wait for recon). I am a single mum too. Do you have friends/family who will be able to help out?

As elporto said, do you have a breast care nurse? They should be able to help you make sense of all the info.

Foo- so interesting how different hospitals do things. I had my sentinel node biopsy done first on a Fri and then had my first chemo on the mon. There was a little discussion amongst chemo nurses and surgeon/BCN about whether I should be having it that quickly though.