**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 Martha, lovely to see you!

Mrsrhod, thank you for your kind words of reassurance re: back pain. Every little twinge has me spiralling into panic at the moment. I went and saw the registrar today who examined me and said I have a very tight knot of muscle just over my coccyx which is what is causing the pain. God knows how it has got so bad (running?!) but it sounds to me like a great excuse for a massage in my near future and thankfully nothing to worry about. PHEW.

Advice, welcome to the thread. You are probably in shock and your mind may well be leading you to some dark places, but this is the right place to be so keep posting. We have all been where you are now and know just how tough it is, there's no 'right' way to cope with this waiting stage, but be kind to yourself, take help and support when it's offered and hold tight til you know more. I really hope you won't be here for long and that it's good news.

Great news Advicewouldbehelpful

Woohoo! That's the best news advice!

That's great especially as you got seen so quickly too hope you're having a glass of something to celebrate !

Hi all,

Haven't been on for a while, but regularly read the posts to see how you are all doing.

malt is was good to hear you got a clear mammo

It sounds like you are all getting on really well, which is great. But I just wandered if anyone else has had issues with taking Tamoxifen? I have had some of the side effects that they tell you about. But discovered that it was down to certain brands. So now I stick to the brand which have caused the least side effects for me.

My periods have also returned after stopping during Chemo, a year on and suddenly they were back. I didn't think that was such a big deal but then my oncologist said because I hadn't had a bleed for over a year they have to class it as unexplained bleeding and so I would have to see the gynaecologist. I had a scan including a transvaginal one and it showed thickening of the endometrium which apparently can be caused by the Tamoxifen. So now I am booked in to have a hysteroscopy at the end of this month. They will have a good look and biopsy the lining just to make sure all is normal.

So still feeling that life hasn't quite got back to normal. So just wandered if anyone else had had any problems while on tamoxifen.

I hope it's okay for me to write this, it's taken me a while to pluck up the courage. I didn't want to worry anyone whose just about to start with the tamoxifen. But just feeling a bit isolated, and just wanted to see if anyone else was having or has had issues. Xx

Hi lovebeingananny, good to hear from you!

I had exactly this issue on tamoxifen last year and had biopsies via hysteroscopy which turned out to be normal. They also found an ovarian cyst whilst they were looking which caused me all kinds of worry but that turned out to be innocent and disappeared on its own.

I don't think the bleeding thing is uncommon but they are keen to investigate it if it's 'unexplained', as you say. They classed mine as that as I'm over 50 although I was pretty sure mine was just part of the menopause.
Apparently the outlook if they do find anything untoward (yes, I did Google!) is excellent because bleeding is an early sign so it will have been caught early and whilst contained, although chances are it's just your period, as it was for me.

As always they are just being thorough, which is what you would want, but I was pretty fed up with it at the time especially as I was going through dcis diagnosis on my 2nd breast as well.

I hope that helps. I won't say don't worry because of course you will, but it's likely to be fine.

just wondered if anyone else had had any problems while on tamoxifen
I had terrible leg ache in my calves. So much so that it was affecting sleep as painkillers stopped working after four hours. It is a known side effect but possibly worse for me because I have secondaries in the bones and the tamoxifen was not keeping the tumour markers sufficiently under control.

Advicewouldbehelpful - so delighted you had good news! Open some and relax x

Lovebeingananny - lovely to see you back here. I've only been on Tamoxifen for about 6 weeks and so far no ill effects other than hot flushes. My periods stopped during chemo, no sign of them coming back yet. I can see why bleeding would make you worry, but hopefully it's all normal and nothing to stress about.

Hi everyone, just caught up with the thread, seems like cancer really is the gift which just keeps giving. Hope the bleeding and the aches and pains are nothing sinister. Glad that Advice didn't have to join us for long.

I've got my first appointment with my oncologist tomorrow. Anything specific I should be asking? I've got a few questions but mainly about avoiding infection as I'm worried about this with the two little ones who are always bringing germs home! We all had a lovely sick bug last week.

Salhal
I would ask if you could have a Portacath fitted for your chemo. I have one (but this was on BUPA) and it has made blood tests/chemo etc much easier. NHS doesn't appear to fit them for everyone and you may not fancy the minor op to insert one (above breast but nicely out of sight).
You'll be told what you are having, so I'd make sure you have the hair discussion!

Thanks Ladies, it helps to know that I'm not the only one whose had issues with Tamoxifen. I'm not overly worried about the hysteroscopy as I am pretty certain that it was just my periods returning and even the thickened lining was within what can be classed as normal for a woman who is pre menopausal.

So had appointment with Oncologist today. Who basically said its all normal side effects and unfortunately some ladies get lots of side effects while others get none. But I suppose I should. Be grateful that I am still here and that I'm currently showing NED. As for the side effects I think I just have to learn to live with them for the next 4 or possibly 9 years!!

Thanks for the great support as always.

marshy can I ask did you have a local or general aneasthetic for your hysteroscopy? I'm booked in for a general but they didn't really say why? I wasn't offered the choice. So assuming they prefer me to be knocked out so I can't moan

I had local and i don't think thats unusual but to be honest I found it pretty eye watering and would ask for a general if I had to have it again.

Thanks Marshy I've heard it can be uncomfortable, so I am happy to have a GA. I just wandered why I wasn't offered the choice. I know the hospital I am at does both. Anyway I'll enjoy the nap!

Hope your back is feeling better, sounds like you've had a rough couple of months xx

Great news for you advice! Fantastic that you were seen so quickly, now you can start breathing normally again

Lovely to hear from you both again mrs and Martha. Glad you are both well and that you had reassurance from you BCN mrs that there was nothing sinister going on with your back

Lovebeing, can't help you out with your query with regards to periods and bleeding I'm afraid as I'm not far enough down the line yet. I haven't had a period for 6 months now thanks to the chemo but it's too early to say whether they will come back again. I'm 47 now so there's a chance I guess it could go either way... I'm not on tamoxifen either but it looks like you've had some good replies already

Salhal, I guess a lot depends on now much you want to know! My SIL was told what strength of chemo drugs she was going to have, she got all the blood test results each cycle and seemed to have a lot more detail than me. I was told the names of the drugs I would be getting (but not the strength - it wasn't until my SIL asked me once that I even realised there were different ones!). I never got to see my blood results but worked on the basis that if the team were happy to give me a dose then they must be happy with them :)

I would expect them to tell you the drugs, the number of cycles and how often you need to have them. Also they will have to run through all the side effects which you will have to consent to. If you're worried about hair loss, ask them if they offer cold cap treatment. I tried it with my first cycle but hated it. My hair came out anyway and I just ended up embracing the bald look.

I'm just back from post op appt with the surgeon. My scar hasn't fully closed up yet so need to keep an eye on that but otherwise I'm being referred back to the radiotherapy team again. I'm hoping I can go straight to the planning appt and miss out seeing a consultant first just to stop it all dragging on any more than it needs to.

Waves to everyone else and hope you're all doing well with treatment, settling back into work or just enjoying this beautiful weather :)

Lovebeing, I've been taking tamoxifen since last June. I'm 50 but apparently not menopausal yet, well that was then. I had one period shortly after starting the tablets but have had none since.

I did get a few niggles and that dragging feeling about six weeks ago and really felt as if it was all about to start up again. I called my bcn to ask if it was normal for periods to begin again after a few months with none. She said it was, tamoxifen can stop them all together or stop them just for a while. In the end nothing happened. What she didn't say was that if they start up again after a year you should get checked out. So, for that info, thank you. That doesn't really help you but you have shared important intel, I'm so grateful for this thread. I now know to shout out if things start up again in a few months.

I have had no side effects, other than hot flushes for the first few weeks. However, I have recently noticed that my hair is getting very thin. I didn't have chemo, so hadn't lost it, but it's definitely thinning now which is rather depressing. I have a consultant appt next month, I'll mention it.

Minty, I hope you get your rads sorted quickly.

Elporto, great to hear your good news re your back twinges.

Waves to everyone else.

mrs people were freaking out about my bleeding because at 55 they thought I should be through the menopause. I knew I wasn't and a subsequent blood test indicated that too. It only came up because I mentioned it to my surgeon in passing at a post surgery check up.

My gp told me that one of her colleagues was still having periods at 59, poor woman.

I was chatting to a lady on the ward last week prior to surgery and she said she was regular as clockwork until 57!

But like mrs, I didn't realise that bleeding after the menopause was something to be checked out so ii will be keeping an eye on things towards the end of the year. However, I suspect if anything does start up again it will just be my ovaries coming alive, and then I can have the joy of going through night sweats and hot flushes for a second time!

Hello, I've been searching threads for info about armpit lumps and keep coming across references to this thread. I wonder if any of you can tell me what to expect at a breast clinic appointment?

I found a lump in my armpit last night, saw the GP today and have a referral to the breast clinic next Thursday. My GP thinks the armpit lump is probably a lymph node, but I'm not sure what that means. The lump is very small (DH couldn't feel it but the GP could), very soft and moveable which I think is good.

My aunt had breast cancer in her late thirties and it took a long time to diagnose and treat. It spread to her brain and bones and she died in her early forties.

I'm 37, so my GP felt that my family history was important in me being further investigated.

What is likely to happen at the breast clinic? I'm feeling really scared, as I only found the lump yesterday at bedtime and it all seems to be moving very fast. I'm trying to get more information so I feel a bit more in control and less panicked, but the more I google the more scared I get. If any of you could tell me what might happen at the clinic that would be great. I don't know whether it's a ten minute appointment or a day full of tests: whether to expect answers or just more appointments? I'm being very wet about it all and need to arm myself with facts and positivity! Thanks in advance

Hello scone. I'm just about to serve up dinner but didn't want to read and run. I'll come back later if no one appears in the mean time. But what I must say is stop googling, just for now. You will terrify yourself with mostly out of date info which will not apply to you. I'll be back shortly.

Thanks mrsrhodgilbert, for posting while dishing up! I have properly scared myself so you're right, I need to step away from the internet. I think this thread will be the best resource, as MN usually is

Hi scone
Welcome to the thread and, in the nicest possible way, hoping you don't have to stay long. Most lumps and bumps turn out to be nothing to worry about but there's lots of support, hand holding and information here whilst you're finding out and beyond if necessary.

Breast clinic appointments can be quite lengthy - think a morning or an afternoon with some waiting around. It's standard to be seen within 2 weeks of referral and great that you have acted quickly.

Expect to have a mammogram and ultrasound of both breasts and armpits. Depending on what that shows, you may also require a biopsy taken. Sometimes they can give you a clear indication of what you are dealing with there and then - hopefully nothing. If you have biopsies taken you will probably have to go back for a further appointment to get the results. I had a week to wait for biopsy results.

You will get to talk to the doctor about what s/he thinks and there is often a breast care nurse present also to provide support and information. The staff are great in my experience and the process is very smoothly run.

The mammo and biopsies can be a bit uncomfortable but completely manageable. You may be a bit sore after. Paracetamol is usually enough to deal with it. There's lots to take in and it's good idea to have someone with you for support and a second pair of ears.

It can be a worrying time but chances are it'll be nothing serious. If not, treatments are very effective as we can all testify!

Hope that's of some help. I'm sure others will fill in with their experience. Ask anything you want.
All the best

Ok, I've got the DH and the dds clearing up. Firstly well done for going to the dr so quickly, exactly the right thing to do. You should be seen at your local breast clinic within two weeks. I suggest you take someone with you, it could be a bit of a long session.

You will be seen by the consultant or one of his/her team who will talk through what you have found and examine you. Then you will be sent for a mammogram, if you've never had one before please don't worry. I have never found it to be painful. A radiologist will study your images and after a short time you will be called for an ultrasound scan. If they find something that needs further examination they may say they want to take a biopsy. Please don't panic, this doesn't mean you have cancer, they're just being thorough. Also, they will give you a local anaesthetic so it shouldn't be painful. If you get to this point you are not going to be getting results that day, it takes up to a couple of weeks for the labs to report back.

Some radiologists are quite open if they feel there is something wrong and may even tell you. Others are more reticent and you could go home feeling quite scared, mine was the latter. Experience has taught me to always ask, if it makes them feel uncomfortable then tough.

I think if they don't go down the biopsy route you generally get sent back to the consultant who will tell you what's been found and remember most people will get good news.

If they take a biopsy you will be given a date to return for results. At that point remember its still likely to be good news, but I'd definitely take someone along with you. Waiting for tests then results will send your mind to dark places you didn't know existed. We all know what it's like and keep talking to us, you'll get lots of support here.

Hopefully it will all turn out ok, but if not you will be presented with a thorough plan of action and the treatments are excellent. Some more difficult than others but not all terrible at all. I have been treated with extreme kindness and feel very confident about my treatment and the future.

Anything else you need to ask?

Phew! Good to see me and mrs are saying the same things

Thanks both of you, that's really helpful to have more detail on the appointment. I was just told a time, not the scope of the appointment at all. I had no idea it was so protracted. I hadn't planned to take DH, but now you've explained what might happen I think I will.

And from my scary googling, I think I learned that some clinics are one stop shops and others are something else. What does that mean, and is there any way to know which mine is?

Thank you so much, I'm starting to feel less awful