**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Got the date for my operation -next Thursday! Bit of a shock, although obviously the sooner the better. Have got a friend who will take me home after op so at least that's sorted, but still not sure about school runs etc for youngest.

Going to tell my teenagers tonight. Eldest in middle of A levels so not a good time as I'm going to need his help.

I have a meeting at youngest's new school the Tues following my op, am presuming I will be OK to go (in a taxi!)

Trying to make a list of ?s to ask BC nurse tomorrow - what will I look like after op? How long before I can drive? When can I wear a bra again? I'm sure there's loads more I should ask but I can't think straight.

Sienna it's good you have a date :) I would think you'll be fine to go to the meeting as long as you take it easy and don't get knocked. I bought some front fastening soft bras in a bigger size than usual for after the op and wore loose clothes. I'd take pjs etc just in case they decide to keep you in, mine was touch and go as they were running late and I didn't go for my op till 3pm. They wanted to keep me in but I cried lol and they let me go home about 8.30. How you look after the op will depend on where the lump is and how big your boobs are,mine looks the same as the other one you can hardly see the scar now but it is harder after radiotherapy
Driving again depends on how you feel, I didn't for a couple of weeks but I'd have driven short distances if it was really necessary.

Arse - I didn't realise the Tax was going to ruin my run of good hair!

Blimey mrs, that doesn't sound good and obviously not what you were expecting.

I've had acupuncture twice. The first time was in a complementary therapies type setting and involved quite a lot of talking about feelings etc. I was there for a stress related skin condition so I didn't mind too much. The second time was with a physio for pain relief for my back and was much more physically focused. Both seemed to help. It sounds as if you wanted the latter and got the former! Hope you are ok.

Sienna - good that you have a date and are working out the practicalities. It'll soon be done and you'll be on the road to recovery.

Still waiting for womb results here....

Boobz - I cold capped for 3xFEC but stopped when we decided to do 9x weekly Paclitaxel (had originally planned on 6xFEC) - I hated it plus the nurses said it wasn't practical/effective for weekly chemo.

Sienna, my daughter was just about to start AS levels last year and I managed to keep it from her until the last exam was over. That's obviously not an option for you but I would urge you to inform his school/ college. It's going to be a shock and may affect his exams, there are things that can be done to help if things go worse than expected.

I had my op in the morning and was allowed home at about 5pm but I went straight to bed and felt pretty rotten. Would your friend be able to hang around a bit in the evening?

Lily/malt, actually I am stupidly upset about today. I trusted them and expected a few questions and treatment. That's not what happened. The manager suggested I try again with another therapist, I don't know if I can face going there again.

Malteserzz thank you, the front fastening bra is a great idea.

My boobs are fairly large so I don't want people wondering why I'm wandering around without a bra!

I told my teenagers, I kept it low key and they were very laid back about it. Eldest took it all in his stride, happy to take my youngest to school in a taxi (other one works full time so can't help as much, and is not as sensible either!) I'm going to let the school know that he is having to deal with all this in the middle of his A levels.

Sienna, good luck to you with your op - and to your son with his A-levels.

Boobz, I had a straight course of TC (Tax & Cytoxan), was told I'd lose head hair from the Tax, starting around day 17, which turned out to be fairly accurate. I lost loads of hair from other body parts, but didn't really notice those at first.

Mrs, that's so annoying and frustrating for you. I'll never understand why some physical practitioners set themselves up as fake psychs instead of providing the physical treatment we need. If we want counselling, we'll find a counsellor. Quite often we need physical relief. That's their qualification, why won't they give it?

After lurking for a while, I reckon I ought to introduce myself. I was diagnosed last September, and I've finished 'active' treatment, but as I was HER2+, have to have Herceptin for a year. I was stage 3, with no node involvement, and had a 23mm lump removed via a WLE, then had chemo and rads. I had 3 EC (I have Crohn's disease, so wasn't give the F), and 3 Tax, I also took part in the Import High rads trial and was lucky enough to have only 15 rads sessions.

I cold capped through chemo, despite being told by my oncologist that it wouldn't work as I had such thick hair. I'm proof that my oncologist was wrong - yes, it thinned, and maybe I was lucky that I didn't get bald patches, but although I wore hats during winter, I never needed to wear my wig. Please, try the cold cap if you want to, it isn't pleasant, I'll give you that, but you have nothing to lose but the rest of your body hair by trying.

I used the cold cap and kept my hair through EC and Tax. I lost every other hair on my body though, I missed my eyelashes and my nostril hairs most!

Ah mixed reviews then. I shall keep going! I have lost nether-hair and armpit hair so far and nowt else! This I could get used to!

Just back from my pre-op appointment.

Saw the BC nurse beforehand and if I wasn't already feeling alone in all this she made me feel even worse! I sat down, she asked how I was, I said not good and burst into tears saying how alone I felt and how difficult it was trying to arrange everything. She patted my hand, gave me a tissue and then when sat there in complete silence, for so long that I felt really really awkward. Just what I needed to feel on top of everything else!

Hi all.

I had a phonecall today from my bcn, ive got to go see my surgeon again tomorrow as hes got more results back. I always knew this was a possibilty. Im now worrying about what else they've found.
Also the shock has well and trully worn off, i cant stop bursting into tears, feel so down and pissed off.
Does it take long for people to accept there diagnosis? I hate feeling like ive no control and lost my footing.

Sorry for the me me post.
I hope ye all are doin well.

Oh Sienna what a rubbish nurse ! Talk to us instead and we'll try to help

Cailindeas it's horrid waiting for results, try not to google or let your mind run away with you while you wait for tomorrow

Trice how are you doing ?

Sienna, that certainly is complete rubbish of the BCN. Some of the big breast cancer charities do a phone or group-meeting service, or provide nursing advice etc. Might be worth exploring. Especially for tips on practical help. As Malteserzz says, talk to people here also.
Cailindeas, hoping the news tomorrow is straightforward. I'd think it would be info on what type it is, from the biopsies. Some take longer to process than others. And for early stage breast cancer, each different type just means a different treatment type, not a worse outcome, these days. So I'd think your specialist just wants to update you on what they are intending to do. For example offering chemo or similar first, instead of after surgery (for some people). Let us know?

Sienna, that appt sounds awful, what was the nurse thinking? I can recommend the nurses at the Breast Cancer Care helpline. I've called a couple if times and they've been brilliant, for practical help and advice but then they continued to chat and asked how I was feeling. Really very good.

Cailindeas sympathy for the very nervous time you're having. This bit is really awful, waiting for biopsy results. But it might not be worse news. I don't really know how long it takes to accept a diagnosis, but I do know that the anxiety dies down with time. True, I still think about it many times a day but its not overwhelming now.

Hello shadow, welcome. How are you feeling now that active treatment is over? When I was newly diagnosed I found it really helpful to hear from people a year or more down the line who were getting on with life. We seem to have a few new people at the moment who feel like they've been hit by a truck.

ljny, you've summed up yesterday's experience perfectly. She wanted a counselling session before treatment and I just wanted her to stick the needles in. Surely, if you're working in a breast cancer centre you take your lead from the client rather than impose your will on them.

Thanks everyone, I couldn't believe it when I was sitting there crying and she was just staring at me, I kept thinking any second now she'll say something but she just didn't! In the end I felt so awkward I just said something like "OK then, let's get on" !!

My youngest is back from her dad's and we have been doing some gardening together. Spending time with her is taking my mind off things a little bit.

Got a few of the school runs sorted with my friends. Think I am going to have to ask my mum to look after my youngest on the day of my operation. She's on holiday at the moment. We are not close and I hate asking her to do anything for me.

Sienna, I do think it's tine that your Mum steps up for you though. None of this is your fault and you need her help now. Do you have a close friend that you can chat to? Please keep talking to us too. X

Today is my second round of chemo, yikes.

Just saw on the news that breast cancers release a chemical that weakens bones... hardly good news but at least now they know they can look in to it.

Hope you are all ok.

Sorry everyone is going through rough patches. Waiting for full diagnosis and scan results is the worst - you feel so out of control.

I feel like I am finally coming out the other side with the shock from diagnosis and am accepting the new normal. I think it helps that I feel so well despite a lumpectomy and 2 chemos down - no side effects and no hair loss so only my very obvious portacath and my crazy flight schedule really making me feel like I have cancer.

Off to London now to do BRCA testing at the Marsden.

Big love to those feeling shite.

Good luck for today hotchoc.

Good luck for today, hotchoc, hope your side effects are minimal.

Thanks for the welcome, mrsrhod. I have been really unlucky through treatment, I've had some of the more unusual side effects of chemo. I'm now experiencing severe joint pains and muscle stiffness which started after the third subcutaneous injection of Herceptin. Even my fingers are stiff when I wake up in the morning! I met with my BCN the other day, she wants me to ask my GP to run blood tests to see if I'm menopausal, and that's what's causing the pain, or whether it's the Herceptin causing it. I have eleven more to go.

I am angry and frustrated that when I should be finding me again, and getting out and enjoying the sunshine with the dog, I have to have yet more tests, and waiting for results. I am thoroughly fed up at the moment, my fatigue at the moment is incredible, planting one plant in the garden means I'm good for nothing the next day, and sleep for 10 hours solid overnight.

Sorry for the rant that that turned into, on the positive side, my eyelashes are making a welcome return!

Sorry to hear you are going through all that shadow. It's bad enough going through the basic treatment but often things crop up which you don't expect and you find yourself doing another round of tests and waiting for results. With me it was lymph nodes swelling up unexpectedly over winter requiring more biopsies and scans and a surprise heavy bleed on tamoxifen requiring scans. It makes you feel like you're on a hospital treadmill and life is not your own and worse news could arrive any minute.

I didn't have the treatment you're having but it must be daunting to be struggling this much with so many more to go.I'm menopausal now at 51 and nearly a year on tamoxifen but I don't have the pain and stiffness you describe. I can offer you hot flushes, sleeplessness and hair thinning. I know I've been very lucky not to have chemo and lose my hair but I wasn't expecting tamoxifen to make it thin so much. Saw the gp yesterday and he confirmed it, an unexpected SE.

You'd think you would get blood tests done by the hospital, I'm a bit unsure who is in charge of my health at the moment.

I'm terrified that the oncologist may decide to stop the Herceptin, to be honest, HER2+ cancer can reoccur very quickly if it's going to, but I honestly don't know how we are going to cope if I continue to have these side effects. My poor partner is exhausted, he's working full time and doing most of the house work and cooking. I feel guilty about that, and the fact that the dog isn't getting the exercise he should be, but if I tried to do everything I wanted to do in a day, I'd be in bed for a week. I squatted down in the supermarket last night, and couldn't get back up.

I didn't understand why my BCN couldn't have ordered the blood tests when I saw her, we were across the hall from the phlebotomy department!

Shadowfax, I've read the research on Herceptin. They had to stop mine after four lots (infusion every three weeks) because of side effects. I had the same worries as you about what that would mean. But my Onc was fairly sure that it would do. Some studies have shown that six months of Herceptin is only about 1% different in effect to a year's worth, for example. And they now have several other wonderdrugs that they can use to whack HER2+ cancer, too. So if there's a hint of it coming back, it doesn't have to be Herceptin. (Do talk to Onc, of course. I'm not a doc.)

Thanks Amber, that is reassuring. Both the BCN and the chemo nurse have emailed him about my side effects, he's on leave this week and I'm due no. 8 next Thursday out of 18. If he told me we were stopping after 9, I think I'd be tempted to kiss him! I'm just waiting for him to call me in for an appointment.

I had my first three doses via infusion, but since then I've had the injections. I didn't have these side effects with the first two, just with these last two. The first two were done just above my knee, and used a different technique to the later two, which were close to my hip.

evening all. Welcome to all those who are new.

Shadow-Sorry you are feeling so uncomfortable with herceptin. I have now had six with a break in between as heart not playing ball. My oncologist told me that in Scandinavia they only give three doses so you've had more than that. I am achy but not as bad. I do find how they give the injection does make a difference. Felt rotten with fifth one but different nurse and slightly different way if doing it with sixth was fine. I hope you get your blood test soon.

Somebody asked about reconstruction after mastectomy and had read you couldn't do it. If I read the post correctly- just wanted to say that I had immediate reconstruction as didn't need radiotherapy but my friend can have it, although she has to wait a year after rads.

Sienna- what a rubbish nurse. We're all here.

Mrs- hopefully if you decide to go for acupuncture again you'll have a better experience.

Hotchoc- hope side effects are minimal for you. Another one ticked off.

Boobz- hope testing went ok. How long do you have to wait? Mine was about three months I think.

Off to pack for weekend away. Oncologist next week to get results of latest Echo and then the decision whether herceptin and I are finished for good. Oh and trying to get ready for a school moderation visit!!