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21st TAMOXIFEN !!

994 replies

MaryAnnSingleton · 15/03/2012 17:41

here we are- how did that happen ?

OP posts:
Sometimesiwonder · 16/03/2012 10:53

Pancakes please....

Who is Harry the monitor, am imagining amber with a large and potentially dangerous lizard Confused?

topsyturner · 16/03/2012 10:58

Snigger !
Harry the Heart monitor is what amber has had to wear to keep an eye on her herceptin heart wobbles Grin

topsyturner · 16/03/2012 10:59

Was sniggering at thought of amber sleeping with a lizard Grin

smee · 16/03/2012 11:08

Sometimes, only you could imagine mind swerve to guessing Amber's monitor is a lizard. It's for her heart and has cables not a tongue..! Huge congrats on the extra work. You can keep us all in fbs 'til eternity now. Grin

Amber, good luck today - hope they tell you something sensible.

Topsy, assembly sounds rather fab - will meander over and look at pic in a bit.

MAS, glad no new dreams and book club sounds fun too. Smile

Gig - best tip I can think of for rads is still to find a cafe. I had a Carluccios right next to the hospital and got a bit addicted to their almond croissants. Grin

Waving to Jane and her bacon sarnie. Been over 20 years since I had any bacon as I don't eat meat, but it does sound strangely tempting..

Ned and OneinEight, how are you both?? Hope feeling okay-ish. Thinking of you both.

Might do a sep post for 1step on all things mastectomy. Bit grey and cold here - I have mountains of work and am a bit eeked that it's Friday. Need another day.. Smile

Sometimesiwonder · 16/03/2012 11:12

Ah, of course the HEART monitor, how could I forget Blush

Sorry amber - best wishes on that from me too.

Don't work too hard, Smee Smile

smee · 16/03/2012 11:36

1step, as promised here's a bit of a mastectomy ramble for you.

So when I was diagnosed, they advised mastectomy, which was kind of helpful as it meant I didn't have the dilemma of choice. We're all so different, so I'd say just get as many facts from your team as you can, then decide after that. If you decide to go for a Mastectomy, the good news is that you imagine it would hurt lots, but they don't. The main pain is from nerve damage and the scar, but it's honestly not too bad. I'd imagine the amount of pain is about the same as a lumpectomy in lots of ways.

Do you know if you're having nodes taken? That's more painful and problematic as you can get swelling and also a lot of nerve pain - you also have to work quite hard to maintain your mobility.

My op meant just an overnight in hospital. That does seem to depend on where you live though/ your surgeon's take on it all. The annoying part is you have surgical drains to the wound (think sports bottles with tubes for fluid to drain into). They're a bit yuk and can stay in for a while - depends how much your body's draining. They take them out once it's below a certain level. My hospital are happy for you to come home with them in. Others aren't.

On reconstruction, they probably won't do it if you're having radiation. Having said that, they might consider an implant, as that's what I was offered. I wasn't going to but both BCN and Surgeon thought it a good idea - their take was why wouldn't you, as it gives you some shape, so in some ways makes the mastectomy potentially less traumatic. My Surgeon also thought it might help with radiation as it kept the skin stretched. I have no idea if that's true or not, as other surgeons seem to think differently.

Pluses for implant: you have no nipple and a huge scar, but you do still have a breast shape, which is potentially less of a shock. Also means no fussing with prosthesis and clothes hang okay. I went for it because they advised it, but also because I thought it might be easier for DS as it didn't look so drastic.

Minuses for implant: whatever they do your new breast won't match the other. Obviously with no implant it's just no breast, but an implant though it gives shape, won't match - it will be harder and perkier (!).

If you went for an implant they'd probably give you one like mine, so an expander implant. It's half silicone and half saline - they put the saline in a few weeks after the op to give your body time to recover. They inject the saline in through a port which sits under the skin. They actually call it 'pumping you up', which always makes me laugh as it's so low tech. I was a bit unlucky with mine as it flipped, so sat very high up. It was never especially comfortable either as very tight and hard, but the Surgeon thought she'd guesstimated wrong and put one in that was too big.

If you do have rads, they almost always have to switch the implant afterwards, so that means another op. I've had mine switched to silicone at the same time as the preventative mastectomy last Oct and it's fab - feels much nicer than the expander one and the shape's good too. They're going to do the switch to silicone just after Easter, so just over two years on from diagnosis I might finally have matching breasts again. Not a big op, and hopefully my final one.

The curious thing about all of this is that I have basically had a boob job on the NHS. My Surgeon says she'll just keep going until I'm happy. She's a wondrous woman, who is approachable and clearly very good so I'm incredibly lucky. I was given a good piece of advice by my BCN, who said you need a qualified Plastic Surgeon - not all Breast Surgeons have had that training, so beware and ask lots of questions. BCN are brilliant for that - if you haven't the courage to ask the surgeon, you can usually get the BCN to give you an honest view, or get her to see if any other women your surgeon has operated on will talk to you. That helps a lot too.

Long, long post. Hope some of this helps. Ask any and all questions, but in the end you decide what's right for you. We're all so different and everyone of us have different breast cancer too. Whatever you decide, you will be fine. Repeat on a loop for sanity, but it's true! Smile

Sometimesiwonder · 16/03/2012 11:41

You're having another after Easter, Smee? Crikey I must have missed that. I will raise a glass to a job well done at that point Smile

smee · 16/03/2012 11:47

Thanks Sometimes, actually I don't think I'd told you. Think I'm in denial, but be nice to have it all done and dusted before the summer. Smile

Sometimesiwonder · 16/03/2012 11:50

Oh yes, it will. It'll all be worth it. Smile

I came across this lovely quote earlier today when I was procrastinating doing some research. You may have seen it before but I hadn't:

"Life may not be the party we hoped for, but while we're here we might as well dance."

Says it all, really.

Sometimesiwonder · 16/03/2012 11:53

By the way, yours was the longest post EVER! Grin

smee · 16/03/2012 11:53
Grin
smee · 16/03/2012 11:54
Smile
KurriKurri · 16/03/2012 11:59

Great post for OneStep Smee - and for me too Smile

Love the quote Sometimes, it does indeed say it all.

I'm reading 'Affinity' by Sarah Waters at the moment - if you like victorian women's prisons, spiritualism with a bit of suppressed lesbianism thrown in, its the book for you. Grin - It sounds daft as a brush, and is, but I'm loving it - can't put it down!

Sometimesiwonder · 16/03/2012 12:10

I read one of hers where the lesbianism wasn't very suppressed Grin

That does sound good, maybe I'll give it a go. Sounds right up my street (not the lesbianism, but each to their own)

KurriKurri · 16/03/2012 12:16

Well I haven't quite finished it Sometimes - so Lesbianism might not be suppressed by the end Grin

I read The Little Stranger which I also enjoyed, but there was one of hers I tried but I couldn't really get into. Forgotten the name though.

smee · 16/03/2012 12:17

I might get that too, Kurri. I liked 'The Little Stranger'. Speaking of Lesbian writers, am about to start Jeanette Winterson's 'Why Be Happy When You Can Be Normal'. Friend bought it me for Christmas, but haven't got to it yet.

KurriKurri · 16/03/2012 12:33

I like the sound of that Smee - it's on my 'to read list' - I love Jeanette Winterson, she had the most bizarre upbringing.

KurriKurri · 16/03/2012 12:34

Sorry - that was half a thought, - she had the most bizarre upbringing, but it didn't stop her becoming really creative and successful. She always reminds me a bit of Matilda from Roald Dahl Smile

Columbia999 · 16/03/2012 12:46

Hi all, I haven't been here for a while, or on MN in general for a few weeks up till the last couple of days.
A few thoughts on radiotherapy, reconstruction and Tamoxifen:
When I had my radiotherapy in 2001, they gave us E45 cream, which I found much more effective than that aqueous stuff I got in 2010. The only area which was sore was under my arm, because like a complete plonker, I didn't realise they nuked you under there! It soon settled down with liberal amounts of E45 though.

Reconstruction: I had the tram flap reconstruction done in 2002, and in hindsight, I wish I'd gone for the implant. It took me ages to recover from the two big operations that needed to be done, and I'd chosen that method because I had a bit of a belly. Not a good reason for a tummy tuck, as it was easily hide-able. Now I have ugly scars across my abdomen and boob and the transplanted skin is a different colour and texture to the rest of the boob. The implant would have been much less aggravation and would have healed much faster. And if you've got a belly, you can always buy some magic knickers!

Tamoxifen: I had been around 10st 4lb for fifteen years, since my son was born, but after a short time on this drug, I put on tons of weight (two stone in six weeks, going from a 12-14 to 16 virtually overnight). Of course you can't prove it, because nobody will admit that Tamoxifen makes you fat, even though loads of women have found that it does!

I had to have a big single dose of radiotherapy in January for some new spots of disease in my vertebrae, which were causing lower back pain. I just thought I'd overdone it by taking on a big part in a show last September, but it turned out to be nothing to do with that. So after having a pretty good year in 2011, I was now in loads of pain again. The radiotherapy doesn't seem to have done an awful lot, because lots of other niggling pains have come in, they move to different areas of my lower torso. They were easing off a bit but now I have a gammy left leg; fortunately this wasn't caused by the cancer, but by muscles going into spasm in several trigger spots, which makes it very painful to walk. Fortunately the physio is on the ball and has given me some exercises to do to stretch the muscles, and a stick, which will hopefully only be needed temporarily. I've had to start taking tramadol again for the pain, but I'm hoping that I can get off them as soon as possible, because the dreams are very weird!
Time for lunch now, and to get ready later to appear in two plays at my local amdram group, I must be a glutton for punishment. Still, in one of them I play an old lady in a care home, so I can use my stick if needed!

1stepatatime · 16/03/2012 13:20

Smee - thank you so much for taking the time to provide such detailed information, it's really helpful and much appreciated. Good luck with what will hopefully be your final op, it sounds like your surgeon is a star.

I think they said they'll be removing some lymph nodes during the surgery, it's a bit of a blur so will ask the bcn to explain when she visits next week. Having said that I'm sure she also said something about having dye injected so i am a bit confused as to whether that's something different or not.

I was really interested to hear of your experience with implants because I've been googling again today and really don't think using my own tissue is going to be an option for me as I don't think I could handle the additional surgery.

The bcn did say that she'd already checked with the surgeon and immediate reconstruction would be an option for me as unless they find anything else during surgery they are treating it as stage 1. So, just to recap, it's possible to have an implant at same time as mastectomy but will need a second op to replace it later? I have to confess to being a complete wuss when it comes to hospitals and ops - I've only ever been in to have my kids.

Will be glad when I've made a final decision that I can stick to, unfortunately decision making isn't one of my strong points. I'm feeling a bit feeble today so maybe a call to the bcn would be a good idea so I can find out a bit more about my options.

1stepatatime · 16/03/2012 13:28

Columbia - thanks for sharing your experience of reconstruction, it's all well and good reading up on these things but I'm finding it much better to hear first hand accounts. I'll take your comments into account. I don't think my stomach muscles would cope too well with such an op, they've never fully recovered from childbirth! Good luck with your plays :)

smee · 16/03/2012 13:33

Hello to Columbia! Nice to see you here, though sorry to hear about your vertebrae problems. I'd imagine that must have been a huge blow. Sounds like they're on it though.

1step, the dye is part of sampling nodes - it's called Sentinel Node sampling. Basically the dye shows them what the first line of lymph nodes is from the breast. They then take a few nodes to see if they've any cancer cells in them. Bit of luck yours won't. If they do find cancer in them, then they do a full clearance when you have the mastectomy.

Reconstruction at same time as mastectomy will largely depend on your surgeon, but also on whether you're having Rads or not - I'm guessing you might as they do seem to throw that at most of us. Maybe that's another thing to ask your BCN. Yes though, you can still have an implant if you are having Rads. It does mean you might face a further op though to exchange the implant as Rads can damage it.

I'd say you're right - you'll feel a lot better when they've tested everything and you know what's next. You're doing a lot better than I was at your stage. I was all over the place and barely coherent..! Smile

Sometimesiwonder · 16/03/2012 13:41

Hi Columbia - welcome back. What a blow about your back and all the aches and pains Sad Well done for keeping on trucking though Smile The am-dram sounds fun, even with a stick.

MaryAnnSingleton · 16/03/2012 13:57

hey columbia welcome back- and also v sorry about back and pains Sad
1step in sentinel node biopsy they may also inject a radioactive tracer which helps,along with the blue dye,to locate the sentinel node(s) - mine was done before surgery. The blue dye will make your wee a lovely turquoise !

smee hooray to have it done and dusted by summer- and matching bosoms too Grin Excellent posting by you and columbia for 1step

kk many thanks for the cheque Smile x

OP posts:
KurriKurri · 16/03/2012 14:18

Oh good it's arrived MAS Smile - when I got to the post office to buy a stamp, the girl said 'you can't send that, it's too small' then she produced a big pink envelope from behind the counter and said 'don't worry, just pay for your stamp, I'll put it in this one and send if off for you' - in case you were wondering about double envelopage Grin

Columbia great to see you, although so sorry you've been having problems and pain, - I hope the exercises help. Your theatricals sound good fun -enjoy the show Smile

Hello onestep Smile - just to add to what I said last night and following on from your question today - I had cancer in my nodes as well, requiring further treatment - so obviously that was a factor in my decision to delay things, hopefully that won't be the case with you Smile

For anyone who remembers my elderly aunty who I mentioned a while ago, - she is having her op today - a wire excision (?) is planned then if they find things are more extensive than they originally thought, they will do the full mastectomy there and then. And she has been offered radiotherapy for after her op. Her son is over from New York to look after her while she recovers. So would be grateful for fingers crossed for a smaller op. for her Smile