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*tamoxifen* 31- in the bus shelter with the cheap booze

983 replies

Gigondas · 03/12/2012 17:13

Shiny new thread

OP posts:
smee · 18/12/2012 13:11

Jingle, they take a bit of getting used to. I think you get a far more natural feel from the other reconstruction options, but implants are a far easier op. Few answers for you:

Do they look okay? Well yes, mine are absurdly perky for a 46 year old. I have no nipples (yet!), as those went with mastectomy, so I have a Frankenstein type scar all the way across. My choice as I opted to remove as much tissue as was humanely possible, but I'd imagine you'll keep yours which means you won't have such visible scars. If so that'll help with the look a lot.

Uncomfortable? Hmm... feels a bit like wearing on overly supportive bra all the time, but that is getting a bit easier and to be honest I've got used to it. I get quite a lot of nerve pain (tingling and some shooting pains), as they have to cut some nerves to remove the tissue. I don't think that's to do with the implants, but is mastectomy related.

With that in mind, it's worth knowing about something called Post Mastectomy Pain Syndrome (PMPS), so chronic pain which can follow mastectomy. Not all women get it, but it's increasingly well documented. I'm not talking about immediate post op pain, but long term pain. I'm 2 years on from first mastectomy and have quite a lot of low level pain/ discomfort. For me it's fine as I can cope so long as it's not cancer, but can imagine it might be harder to square if you're doing it purely preventatively. Definitely worth asking your surgeon about though.

Also ask your surgeon if she's using the new mesh implant option? I'm not sure what it's called, but it's relatively new and involved using some animal skin (I think) as a support hammock type thing. Apparently that gives a far more natural support and feel and is more comfortable than the cruder version I had.

So yes, it is very different to having natural breasts. No denying it isn't. But I still have skin sensation, so that still feels nice and let's face it it's a heck of a lot better than having cancer.

Hth. Ask anything you want. I really don't mind. Smile

JingleUpTheHighway · 18/12/2012 13:22

This reply has been deleted

Message withdrawn at poster's request.

smee · 18/12/2012 13:30

I hadn't heard of the post op pain either. It's the sort of thing they don't tell you! I'd say with mine it's not constant, but I am in pain every day, usually when I'm tired. It's totally bearable in my case and just annoying, but there have been women who find it overwhelming. You have to remember that for many it's totally fine though. Trouble is you never know if you'll fall into that bracket or not. Odds are you will.

When I woke the first time, I was just hugely relieved as the cancer was gone, the surgeon said she'd got clear margins and that was all that mattered. The second time was also a relief as the op was over, but I've found it hard to look in the mirror. Am getting there with that now, but remember I have Frankenstein's scars, so that doesn't help!

My DH is kind of like me, so we were both freaked by the cancer diagnosis, so losing the breasts were just necessity at first. He's been lovely about them though and seems to approve!

Basically I think it's a really tough call, but let's face it you've got it in your head now. I know with my preventative side, I told myself I had to do all I could to avoid recurrence. That way if cancer ever did come back I could look at my son and know I'd done all I could. Just my way of getting through, but it felt hugely positive in a scary sort of way. Sort of like taking back control of my body.

  • yes none-saggy breasts are funny and fab after breast feeding. I was hoping mine would double as a buoyancy aid when I swim, but sadly they don't. Grin
JingleUpTheHighway · 18/12/2012 14:11

This reply has been deleted

Message withdrawn at poster's request.

Lomaamina · 18/12/2012 14:37

Jingle it's not for me to say, as I'm new to the thread myself, but it's certainly not hijacking as far as I'm concerned. Sadly, very much on-topic.

All the best from me with my mere one-sided Franckensteinness (I had the areola complex removed from one breast under surgery last week due to Paget's disease). Sad

My DH said something lovely to me yesterday when I was quietly moaning about being 'deformed'. He said he views it as being a bit like that female war journalist (Colvin) who lost an eye. It's a war wound to be worn bravely. I rather like that.

Apologies for being a wimp, and having said that, but I'm dreading how I'll respond to how it looks when the bandages come off. A dear friend of mine said if I'm worried, I shouldn't look Confused.

KurriKurri · 18/12/2012 15:35

Hi all, - I braved the shops this morning and that's it - not going into town again before Christmas - it's a nightmare, but I had to get a b'day pressie for DD (inconveniently born on Dec 29th the troublemaker) and I wanted to avoid having to go out after Christmas.

Ned - thanks for photo, - little Ned looks absolutely adorable as usual in his pageboy outfit. He is getting tall isn't he? he is one gorgeous boy Smile

Penis - crying absolutely normal - it is very very early days for you, - you are still in shock and having to deal with waiting and anxiety - you are bound to be emotionally on edge. You are very wise to take some time off if you are finding it hard to cope with talking to colleagues - do whatever you need to, to get through this hard part, and hang out here for hand holding and cake Smile

Jingle - I don't know anything about preventive mastectomy, but I have had a mastectomy after cancer DX, - in some ways it is probably a little to easier to handle if you actually have cancer because you just want it gone, and the op is part of that. But you have a big decision to make and you are bound to be apprehensive especially if you are young.

All I can say is, in hindsight from the viewpoint of going through cancer, if I had had the opportunity to prevent my cancer by having a mastectomy I would have done no question. I know its not the same situation as you are in, but hope different views are helpful and what you are after Smile

As for pain etc. - I did have some pain afterwards in my chest - and some itching, but this has all calmed down a lot now. - Also I had radiotherapy which may have caused some of the effects. I don't know if there are any young women's groups in your area, - you might find them helpful, there are definitely different issues for younger women and talking to others in a similar situation can often help. I wish you loads of luck anyway, and happy to answer any questions about the surgery that I can help with.

Oh and you aren't hijacking, you are very welcome Smile

Loma - that's a lovely thing your DH said - he sounds a good chap. And I think he is right. Smile xx

Love to all - MAS I have my Iceland cheese footballs and twiglets - thanks for the tip (also some poundland walnut whips) Grin

JingleUpTheHighway · 18/12/2012 15:50

This reply has been deleted

Message withdrawn at poster's request.

MaryAnnSingleton · 18/12/2012 16:22

stick around jingles - you are certainly not hijacking the thread and are most welcome.
Hands much the same dear smee - think this is how they'll be really- not intolerable,more pesky than anything else.
I heard the Lynn Truss this morning - v funny - will forward the link to dad who will appreciate it. The round robin turned out to be quite dull- fascinating facts revealed-that they enjoyed watching tv together,particularly cooking programmes and that their son had a new cat (a Maine Coon which actually was interesting to me)
They got another from a Swedish friend who lives on the Cote d'Azur but I didnn't bother reading it.

MaryAnnSingleton · 18/12/2012 16:23

meant to say- had nice lunch out with old school pal - was lovely- took her to have coffee with my olds who were delighted to see her.

Copthallresident · 18/12/2012 17:26

jingleupthehighway I am 11 years post mastectomy and in the last 11 years I have met a lot of women who have had various sorts of breast surgery and I think smee may be very unlucky, or my friends lucky? I haven't heard of anyone having the post op pain smee mentions but I had read about it and that you can get the same sensations as amputees, of the boob still being there. (smee that is annoying and unlucky, will it fade as the nerves grow back? I would say most of my sensation had returned to entirely normal by 3 years post op) The only problem I had post mastectomy was the numbness which if someone touched the numb area felt a bit like the throb you get with an electric shock. However that was only if someone touched it firmly, bras, prosthesis etc weren't a problem. It improved in the first months, very quickly at first but then more slowly and now I have all normal sensation back apart from a very small numb patch at the back of my armpit.

My friend who has a strong family history, not one of the known genes but the researchers are sure she has one they have yet to identify. She caught a lump very early 10 years ago but has just had a recurrence in a lymph node, she has been treated successfully and has just had her ovaries removed but that feeling it is lying in wait is always there, just hoping medical science is going to have moved on enough to treat it if it happens again. As indeed it has, since she has been treated entirely by a hormone specialist whereas with a lymph node involved 10 years ago I had chemo even though my tumour was also very Estrogen positive. However I am sure she would say the peace of mind will be worth it.

I obviously woke to a flat chest, I was sad but also relieved to have got rid of the Cancer. I couldn't look at first but after my hair went as well I stood in front of the mirror and realised the dread was the worst thing, once it had happened I realised it was still me and I hadn't lost anything that really mattered. DH said the same.

pen It is entirely normal, and certainly how I felt. Apart from the shock and coming to terms with what is actually happening we all have lots of preconceptions and emotional issues with the word Cancer to deal with, in ourselves and others, even though they don't apply to our illness because Cancer isn't one illness, as we all know it is many. It helped me to do the telling to people by email, I know it sounds emotionally crippled but I just found it easier to get it over with and deal with people's reaction from behind a barrier. I'm afraid I even did that to my parents and closest friends but they understood.

gigs It might be worse than dumb gweilo though!!! You know the Chinese characters used colloquially for the round windowed Jardine Building in Hong Kong spell out House of a Thousand Arseholes .

I think the HVs have a brief to act if there is the slightest additional load to a family. I inadvertently mentioned at a pre natal class that my Mum had post natal depression. I didn't, in fact with a healthy baby after all the miscarriages and infertility I was on Cloud 9, but the HV who took the class wouldn't stop hovering for the first few months with questionnaires to find out if you were depressed which asked things like Do you feel sad? Then of course once disco queen cot hurdling DD could run she did, everywhere very fast, and was a specialist at nutting the skirting boards and door frames, and escaping Houdini style from harnesses in prams and shopping trolleys. Every trip to Casualty was followed by the HV visiting with deep suspicion etched all over her face. I only lost it once when DD2 was 3weeks old, our car was stolen, and DD had vaulted out of the pram (in spite of 3 harnesses) on the 3 mile walk to nursery and she looked at me as if I was pathetic and said "Some women have to cope with that all the time" when I finally conceded I was finding it a bit stressful with the added burden of spending 2/3 hours walking DD to nursery and back twice a day!!....... I am sure she was evil and I was not being paranoid!! I think you have every right to say I am coping fine, no problems, goodbye and thanks.

Copthallresident · 18/12/2012 17:48

MAS Perhaps our next thread should be in the bus shelter with the babycham glasses giggling over the round robins, the one that was all greek to me was from Hawaii Xmas Envy " the family had a fabulous summer enjoying their own backyard and one of the world's largest and most spectacular swimming pools where people venture on their lifetime holidays on a regular basis" Just like Twickenham really......

Will listen to Lynne Truss. Does she start, as Hawaii friend does " Each year it seems to get profoundly sweeter to go through the exercise of summing up the current year" ??? I must stop, she is actually a very nice person and I do think there is something to be said for American enthusiasm.

Cards sent off, and now off to shops for late night smash and grab raid. Topsy smee etc. You need not panic, you have loads of time [panics]

MaryAnnSingleton · 18/12/2012 17:55

Grin copt !!

smee · 18/12/2012 20:21

trying not to panic, though have just bought my mum a lovely scarf type thing, which I'm sure she'll love. Smile

Copt, yes I am just unlucky. I hadn't heard of it at all, but my surgeon (now!) tells me it's estimated 20% of us have chronic pain. Good chance it will fade and it's really not too bad, so Jingle, don't let it put you off. I only mentioned it because I wish I'd known about it. Very unlikely to happen to you though, as you're not having node removal, which reduces the risk.

Lynne Truss made me giggle. DH's uncle is death and health obsessed, so he has created an astonishingly medicalised verse. Favourite has to be 'dry macular degeneration' with 'medication'. Surely a world first. Grin

HND, how are you? Are you keeping busy?

So much to do here... Not sure where to start, so might just make a list. Will that make me feel better or worse?! Xmas Confused

smee · 18/12/2012 20:24

MAS, when do you see the team again? Is it before Christmas? Seems unlikely now, as it's so close. [eek!]

Kurri, what did you buy for DD? Are you less busy now?

topsyturner · 18/12/2012 21:30

I also have post op pain Smee
And bizarrely I get such an itch in my missing boob !
It's the weirdest feeling Grin

KurriKurri · 18/12/2012 22:54

JIngle - I second (third? fourth?) the idea that pain is connected with node removal, they do a lot of rummaging around and damage nerves etc. when they remove them - so hopefully you may manage to avoid that kind of nerve pain.

topsy - I get the itching in a non existant boob - it is such an odd feeling, and scratching doesn't deal with it. I also get a kind of acute pain round my chest - feels almost like cramp and lasts maybe 30 secs then goes - I'm guessing that is a nerve thing too, - anyone else get that? or am I a total weirdo?

Been out to a Christmas party at my art club tonight, which was fun. Very foggy driving home and we nearly hit a deer - it was a young one and was just standing in the middle of the road, - have to say that seeing it close up in the mist, it looked really beautiful and mysterious.

Smee, I have got DD some stuff so she can do felting, a book with instructions and projects, some wool and a sort of mat thing that you rub the wool on to make the felt, - I think she'll enjoy doing it she likes doing crafts. I also got her the DVD of the Woman in Black, so that is her sorted, - I won't have to brave the shops just after Christmas and fight my way through the professional sale goers!

Tonight was the last time I'll see one of my dearest friends for a while, - she is off to America for 3 months to visit her DD, - I have been given strict instructions to e-mail her all the gossip while she's away Grin I'll really miss her - we do loads of stuff together.

MaryAnnSingleton · 18/12/2012 23:25

Presents for dd sound great kk - sorry that you'll miss your friend though -
smee am seeing Onc on Friday so I expect I 'll be given next round of chemo. It's secondary bc group festive lunch tomorrow.

Copthallresident · 18/12/2012 23:51

MAS Enjoy your lunch. I hope it works as a spport group, it really is brilliant when it works. I hope next dose gets reduced again.

Presumably everyone has had sentinel node removal? It was just coming in when I had my surgery so some of us had it and some of us had the whole, another quaint saying, mat, out. I must be very very lucky because they removed all my Lymph nodes, and yet I have got away with no lymphodemia or pain / phantom pain etc. so far. I do worry though that it is waiting down the line. I had lymphatic massage in Hong Kong, part of the Breast Cancer Centre Dr Polly set up but not found anyone here to trust with my lymphatic system. Has anyone?

smee · 18/12/2012 23:58

I don't get the itch thing - lots of sun burn type feelings, but if you're a weirdo then I'm one too, Kurri. Sounds v.familiar - completely freaked me at first as was convinced it must be recurrence. Though actually my preventative mastectomy did me a massive favour with our old friend Miss Paranoia, as I get similar pains on both sides. Most unlikely that it's cancer in the preventative side, so it means I relax more about the cancer side iyswim. Smile

Shame about your friend going, Kurri, but she'll be back before you know it.
Presents for your DD sound lovely. Can just see you both curled up terrified in front of 'Woman in Black' creating weird things out of felt Grin

MAS, am glad you're seeing Onc. Even if they say there's nothing much they can do about your hands and feet, it will maybe help to hear their take on them. Lunch sounds like a treat. Is it? Can imagine it's a bit of an odd one, but hope it's fun along the way.

Right, am off to bed. Hopefully to sleep. Last night was a bit useless.. zzzz (hopefully!) Smile

PenisColada · 19/12/2012 00:48

Looks like no sleep again for me tonight. This waiting is complete torture.

jchocchip · 19/12/2012 06:07

Hope you did manage a few hours pen Waiting for results is torture. Hi to jingle I'm a lumpectomy girl myself wonky boobs being well worth it if the cancer has gone.
Had interview yesterday, did ok but thought of lots of things should have said afterwards. Will hear after Christmas. Having furniture delivered today, can then start thinking of Christmas.
Waves to mas, kk, smee, copthal, ned, topsy, amber, gigs and loma - who've I missed out? Luffs you all. I'll put a Brew on. Christmas buffet at work today Xmas Grin wonder if we will have a prawn ring?

Gigondas · 19/12/2012 07:18

Morning all copthall- I would trust my massage lady (she is local) with lymph massage. She is only person I have felt happy to manipulate my scar - can pm you details if you want.

Brew For penis - and lots of love as it is really the worst stage. I remember not believing people saying this to me but it is better when you know and have a plan.

kurri lunch sounds ace.

Day out was lovely - big gig loved it and mini gig seemed to. Off for last therapy and lunch with my cousin who has been a fantastic support (has ovarian cancer). We are off for dim sumGrin.

But before that big gig has a play date- a bunch of over excited four year olds, what could go wrong?

OP posts:
MaryAnnSingleton · 19/12/2012 07:35

good luck with the big gig friends and have a lovely dim sum.
Am looking forward to seeing the group today,though a bit nervous as don't know them really-=apart from the nurses...
sending pen lots of good vibes and fingers crossed for jane's job xxx

topsyturner · 19/12/2012 07:50

When is your apt Penis ?
Is it today ?

Mas enjoy the lunch .

Gigs think you should have wine with your dim sum , after the play date you are gonna need it ... Grin

It is howling with wind and rain here this morning .
I have to wait in for a parcel today .
It's DDs main Christmas pressie .
And Argos have been repeatedly lying to me about it being delivered , so we shall see if it arrives !

topsyturner · 19/12/2012 07:51

Will keep everything crossed for the job Jane , and enjoy your prawn ring Grin

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