**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

nanny that sounds like a tough day and now the week of waiting. Wishing you the very best results of course and I hope you have some nice distractions in the coming week.

marshy all moaning entirely understandable and allowed. It must be so draining.

All those in the midst of chemo, it must seem like the end is never coming but if you're feeling rough hopefully those cancer cells are feeling rougher.

I had my first undisturbed night in weeks as DH is away. Don't think I moved all night. I might have to suggest separate beds!

Glad the sciatica is a bit better Marshy and sleeping better mrs.

Nanny, so sorry you are having such a rough time, but hopefully your scans will be clear, I really do have everything crossed for you and am sending my best wishes

nanny I hope after what you had to go through that the news is good. Scans seem to be our companions from now on. As for sleep, well i guess i will have to forget what that is too from now on.
Mrs, you made me smile when you mentioned sleeping better with your Dh away:) maybe you do need to take over the bed.

Wishing everyone a good night's sleep and crossing everything for nanny's results.

Also thinking of boobz about to undergo surgery.

Night all.....

nanny sorry to hear you are still having a difficult time on Tamoxifen. My experience of it (and other hormonal drugs) hasn't been great but not as bad as yours. I know a lot of women have problems with these drugs - it is amazing what havoc is caused by such a tiny pill. Hope something can be done for you and that you can at least start getting some decent sleep.

Thanks Ladies, I really appreciate all the positive thoughts. BCN has said she'll keep an eye out for the results (she's not the most reliable person) BUT worse case scenario is I won't get them till Wednesday! But that's not too far away

Sending love and positive thoughts to all those going through Chemo or Surgery xxx

Well so much for my BCN letting me know the results before the weekend. I've just emailed her, and got an automated reply, saying she is out of the office till Monday Why do they say these things if they know they can't carry it through! I was more than happy to wait till my Wednesday appointment, until she said I could probably get them before the weekend!! It's so frustrating!

Sorry moan over, I know many of you are going through far worse! Xx

Aw, that's really not fair of her nanny, is there anyone else, another nurse or your consultant you can speak to to see if they have the results? I feel your pain, for me the scan results are the scariest part of the whole process as they have the potential to completely change your life. Still thinking of you and hoping it's just the Tamoxifen causing your pain.

Oh that's very frustrating nanny. Is it worth a call to your consultants secretary, they are often the font of all knowledge?

I have been lurking all week, and I hope that everyone undergoing treatment and waiting for results is well.

I got my results today after dutifully staying away from Dr Google all week long. My cancer is DCIS, high grade but thought to be non-invasive. It's 80 mm on the mammogram and 60 mm on the ultrasound, so a reasonable size, but should be fully treated by a mastectomy. The biopsy of my lymph nodes had an inadequate sample so this was repeated today. The receptionist at ultrasound said I couldn't have the procedure taken today, but my lovely consultant intervened and made sure that it happened.

Unfortunately, my surgeon does not want to do a reconstruction. He said he would do one if I insisted, but it would not be his recommendation. I am a high risk patient and the reconstruction would put me at greater risk of complications due to the much longer operating time. I'm not sure how I feel about that, but obviously I'm very happy overall.

I met my breast cancer nurse and she was lovely too. She was in my appointment and then had a long chat with me after my biopsy. It was great to have someone to chat to after seeing the doctor, because I could ask her all the questions I forgot to ask the doctor. I thought I would need chemo, but I will only need surgery unless the analysis of the breast shows up something unexpected. They will also remove some lymph nodes during the mastectomy.

MySillyDog, I had high grade DCIS everywhere. I also had a tumour with fingers on it that was growing very slowly and hadn't made it outside of the breast duct. It was the lump that I felt but left it because I was sure it was hormonal & I was very busy at work. I really was one very lucky lady!
I had a mastectomy with immediate LD flap reconstruction. The operation was massive; they did it in teams over 9 consecutive hours. I'd had 5 lymph nodes removed the previous week.
It was a massive operation, I opted for it because I'd had a bad ankle break the previous year and had had 3 operations linked to that. I'd wanted to keep my operation count & hospital stays to a minimum, if that makes sense! I was under pressure about sickness
My oncologist was happy to do it all in one to get me up & done quickly, but I still ended up having to have another operation 12 months on, plus more major surgery on my ankle & leg.
So, it is a really big operation, followed by 24 hours in HDU. Your onc is probably trying to save you this by making it into 2 more manageable operations.
Good Luck

Thanks for sharing about the recon op. My surgeon doesn't want to put me through the op now or at a later date. I have a lot of scarring on my chest due to previous surgery so I'm not cosmetically great anyway, and I have never had a cleavage. I can't wear anything low cut even now.

I hadn't realised what a massive op reconstruction was. Naively I thought it would just be a boob job, but my BCN explained to me how muscles need to be moved about and sterile cow hide being sewed into the chest to make a flap - actually she lost me at that point. She also said that I would need to lose my nipple whatever surgery I had.

Does anyone know how Mx affects use of the hand? I'm going to have an exam 3-4 weeks after my op. Will my ability to hand write be reduced it's pretty illegible anyway? I can apply for special exam conditions but I'm not sure what help I will need. Maybe stop the clock rest breaks?

Hello all. In quite a dour mood today. Nothing exceptional in terms of side effects, but you know how in the midst of chemo ( or perhaps treatment of any kind because of the cancer) there comes that time ( it could be a minute or a day) when you just feel so miserable and low that you want to sulk and then when you sulk the people around you snap at you because you irritate them and then you just feel sorry for yourself and have a proper meltdown? I think I wanted DH to be mean to me by sulking today, and I think I knew he wouldnt understand and wanted him to have a go at me.
This whole cancer thing really truly is a Lonely planet.
Sorry for the rant:(

Hi royal we all know exactly what you mean. Sending you a ((((((((BIG HUG))))))). This journey is tough, and only those who have been through it, can truly understand the emotional roller coaster that it is.

I'm 2 years on and still have days when things, just get too much, and I feel very sorry for myself. I think under the circumstances we have the right to feel like this. I have gradually learnt, that I am allowed to feel however I want, and if those around me can't deal with it, that's their problem.

Don't feel bad, for having an off day. You are going through a lot, and we all have 'off' days, with or without Cancer!

Take care xx

Hi mysilly
If you're going to have anything to do with breast cancer then dcis is a good diagnosis to have. I've had it extensively and high grade in both breasts, both times requiring 'only' surgery, though noone would describe having your breast removed as a walk in the park.

My experience of mx and immediate recon was quite straightforward although I had implants rather than LD flap. It's a shorter op with a shorter recovery. My mxs were separated by 12 months and was in hospital 2 nights the first time and 1 night the second, on an ordinary ward. But I was otherwise fit and healthy with no additional risk factors.

Has implant recon been ruled out for you?

I would have found it a tall order to take an exam 3 weeks after my op, but mostly cos of feeling emotionally a bit battered. Although your hand should be fine for writing, I would have thought it reasonable to ask for rest breaks. You will need time to do some gentle stretching exercises and you may stiffen up or maybe get swelling in your hand/arm if sitting in one position for a long time. You may also need to take some pain relief. I found it was my armpit where the lymph nodes had been taken that was the most sore, more so than the site of the mx. Good luck with it all.

Sorry you're feeling down royal xx

Finger crossed for your results nanny and hope the weekend doesn't seem too long

Hello all.

Just checking in to say I'm doing ok - had the double MX and recon on Thursday afternoon. Wanted to go home today but was still draining over 300ml on my right side so they've asked me to stay in another night.

Really quite painful but it's under control now with oramorph through an injection every 4 hours seems to be doing the job.

Tits seems massive! Am hoping that's just the swelling and they will come down. My cleavage seems to be miles apart as well.... hmmm. Hope it all settles down!

Hi boobz!
Congrats on getting through the op. I've been thinking of you
Drains are a pain but hopefully the flow will subside soon. And don't worry, the mountains will also subside and you will be left with nice perky boobs and can choose to wear a bra or not as the fancy takes you - this has been a revelation for me at my advanced age Hope you're getting some rest in hospital. I know I was very happy to get home to my own bed.
All the best.

Thanks Marshy - good to know these boobs will change a bit - they are somewhat alien and odd at the moment! But definitely perkier!

They will be lovely. And then you get to decide whether you want nipples which isn't something I never thought I'd ever have to consider

I have silicone ones which I can attach whenever the fancy takes me but given that I've spent most of my adult life trying to conceal nipples that isn't very often. Plenty of time to think about that though. Just get over the op.

*ever

Marshy you've really made me laugh. Yes, deciding if you want nipples & if you want them tattooing isn't something that I'd ever thought might need deliberation!
It's 3 years since my mx, I still have the odd wobble about it, but I think that I'm allowed to.

Francis Did you have tattoos? I've got a yearly follow up appt with my surgeon and BCN in Dec and wondering whether to broach it. Might be a half way between nothing and something that stands out

Royal I'm sorry you are feeling down today. I haven't had chemo so I can't know what you are going through, but I can give you a virtual hug and cheer and hope that tomorrow is a better day.

Royal, this whole cancer thing is a very lonely planet, I completely agree. However much someone loves you they can't possibly have any idea how it feels. The uncertainty we are all going to live with for the rest of our lives is very isolating. No matter how good our treatment is, how good are odds are we can never be certain of our futures because no one will ever tell us were cured. That's quite a unique way to have to live the rest of your life. I think it's perfectly reasonable to throw your rattle out from time to time. But I hope the gloom soon passes.

Boobz, are you planning to escape straight back to Italy or do you have to remain in London for a while?

Our odds, too much wine!!