**Tamoxigang counting down to Easter eggs- thread 48**

[BetsyBoop]

throws some hot cross buns on the trolley

Received in post a letter inviting me for a mammogram as part of the routine 3 yearly screening for the oldies like me. I've just phoned to cancel!

Really sorry to hear your news. Hopefully you will get the treatment you need and like Amber says you need to be forthright with your oncology team.

I've got my bone marrow biopsy tomorrow and I'm keeping everything crossed that I can go ahead with the stem cell transplant without a need for another chemo inpatient stay. According to blood test results today chemo seems to have worked so I'm hopeful.

So sorry about your news really, like someone said, I wonder if another person got your results?! It's worrying when you rely so much on these professionals to get things right,
Let's hope they sort you out once and for all this time,
On a positive note, DF managed to eat some cauliflower cheese after his morphine

I hope it's ok to post here on behalf of my mum! She had breast cancer 4 years ago, she had the lump removed and radiotherapy. She made a good recovery, thank goodness.

She has been taking Tamoxifen and she hates the side effects. Night sweats, hot flushes, restless legs and terrible disturbed sleep mainly.

She wanted to stop taking it but she was persuaded to continue. What kept her going was she could stop after 5 years.

She's just had her annual check today and has been told it is now recommended to take it for 10 years, she will find out for sure at her 5 yr check next year. She is very upset and emotional about it and says she can't take it anymore

Her oncologist recommended a low dose of an anti depressant (I can't remember the name of it) which can help. I wondered if anyone had tried this and if it had good results?

Or any other tips re Tamoxifen side effects?

Good luck to you pickle

amberlight I know you are a whizz with all the stats and was wondering if you know the prognosis with vocal cord cancer? DF's tumour is on his right vocal cord (T1a)? As far as they can tell it's not spread. He's having a total of 33 sessions of rads,but no surgery or chemo, what are the chances of it recurring? Assuming they get rid of it all in the first place? TIA

Hi thornrose I started taking tamoxifen 3 weeks ago, and was also very concerned about the side effects when told I'd be taking it for 5-10 years. The hospital where I had my radiotherapy recommended I try acupuncture, which has a great track record in dealing with hot flushes/night sweats/sleeplessness. I'm now having weekly acupucture sessions, the lady treating me recommended a course of at least 8 sessions. I've now had 4 treatments, and I have to say, I think my hot flushes have improved - less frequent and less overwhelming. My sleep is also improving. My hot flushes and sleeplessness started in December whilst I was having chemo, so whether its a combination on the chemo drugs leaving my body and the acupuncture I couldn't say, but I do feel better.

Fingers crossed for you Difficult

Really I am sure that you are still trying to digest this latest piece of news. I am so upset for you. I simply can't imagine what it must be like for you to hear that under the circumstances. I am sending you my very best wishes over the ocean and I have my fingers and toes crossed for you.
In the USA they treat liver mets differently to the UK or Canada. They are much more aggressive and routinely surgically remove lobes of the liver to reduce the tumour load. (The liver can regenerate.) In Canada and the UK the belief is that surgery will encourage angiogenesis and is therefore a bad thing. Patients here in the Great White North have been agitating for a more aggressive approach to treating liver mets specifically and I believe that there has been one (very recent) study which showed a benefit for surgery on secondaries.
The impression I have from my medical oncologist is that the Canadian approach is to hit aggressive bc hard initially, but if it recurred any treatment would be symptom management. I like and trust my MO, and I believe him to be simply telling me how it is. However, I take this information he gave me as warning that if I did have a distant recurrence I would have to be incredibly proactive and advocate very very hard for them to do something rather than nothing.
If I was in your shoes (and I am not and I don't know how I would feel if I was) I think that I would want a team I could trust, I would read up as much as I could about the options, and I wouldn't take anything as a given - especially re. The liver. The best way forward won't necessarily be clear, even when you have had time to get your head around it a bit more. It doesn't hurt to ask really difficult questions to the oncs though, and make them explain until you understand the pros and cons of everything. Even the chemo option is complicated as there are many more options available to you now. The USA forum breastcancer.org may provide a different perspective to treatment options than you will get on UK or Canadian ones....
But mostly I want to just give you a hug, and let you know that I am thinking of you, and I still believe that the top of the mountain is just up ahead for you. With luck like yours atm, I wouldn't recommend buying a lottery ticket though ;-)

Thanks for the quick response Handbags that's interesting, I'll recommend that to mum. She's put up with it for 4 years and I think she's totally fed up. She sounded so down today it worried me.

I wonder if the annual checks are more stressful than she makes out?

Thorn rose I bet she does find them very stressful, it's a reminder of what she's been through and there's always that panic that they will say that it's come back. She's probably trying to protect you from that. I've only been on tamoxifen for a couple of weeks but I have read that there are different brands and some people get on better with some rather than others so it might be worth her asking about that.

She didn't even tell anyone she was going malteserzz I'll mention that there are different brands, I'm pretty sure she doesn't know that, thanks!

I have had two brands of Tamoxifen far (4 months in). I definitely have different side effects with the two brands. I can empathize with your mum Thornrose though as I feel pretty fed up with both sets...

UK I texted mum both bits of information. She texted back that Acupunture is too expensive (she is retired). I'm not sure if that's a knee-jerk reaction or if she has looked into it

I'll leave it a couple of days before mentioning it again.

I'm so so sorry to hear your news really. Can't add anything, but wanted to send hugs. There are lots of treatments out there, and lots of good positive stories! Xx

So sorry to hear your news Really thinking of you. Hopefully this is just a setback and with the correct treatment you will conquer this x

Wow I am totally overwhelmed with all your kind messages! Thankyou so much!

So here's the weird thing! I don't feel upset, angry, sad, etc etc etc I had gone to the appt yesterday thinking the worse and when he told me I just went into auto pilot asking 101 questions! It was like I was talking about someone else!

Then I came back to the house, had the best nights sleep I have had in months and then went to work today!

No tears! Nothing!! Isn't that really odd!? I have my Rads starting tomorrow and thats all I can think about right now! I'm not sure how I should be feeling about the latest results! I've read all your messages and you all sound more emotional than me! Odd??

amberlight thanks for info about %. I hadn't been brave enough to look into it. Met the oncologist today who talked about how mine is more likely to travel in bloodstream rather than through the lymph so am now not as calm as I was. I guess this is why I have to have chemo first. He also said I was triple negative and it is 18mm. Is that unusual? it all feels much more real now and I have a date for first chemo 2 days after my sentinel nodes so am hoping I will be ok for it. I am to get FEC-T.

really sorry to hear your news. Thinking of you.

malteserzz hope tomorrow goes well. Tomorrow I want to sit with every child, hear them read and chat with them while my fab student teacher is in charge of the rest. That will hopefully keep me going when I can't be there.

Hello to everyone else and thanks for all fab advice to keep me sane.

Bloody hell really! How completely vile for you.
They had better pull the stops out to give you A* treatment!

Pickle - fingers crossed for your biopsy.

Re tamoxifen, I've stopped taking it pending my pelvic scan on Monday and gynae appointment some time soon I guess. I figured a fews weeks off it wouldn't make a fat lot of difference but just didn't feel right to keep taking it at the moment. No bleeding this week, plenty of night time flushes though. Hopefully you're right kitkat and it's nothing untoward

Really - So sorry to hear your news. I don't think your reaction is odd, I think you might just be in shock. I know that you have had various problems with your Team/Hospital, how do you feel about continuing your treatment with them? I am not sure where you are in London, but I would recommend my Oncologist. He has both an private and NHS clinic in South London. Let me know if you would like his details and I will PM you.

Really - I meant to add that chemo for advanced BC is usually more 'gentle' than chemo for early BC. I had an allergic reaction to Docetaxel so I was put on Paclitaxel, which is usually give for advanced BC, and have found it much easier to tolerate than the Docetaxel, (which I know you hated).

Triple negative is not as common as ER+ but it's easily whacked with chemo etc. And there are nifty trials of new potions happening if for some reason it sneaks back in later years. It also only misbehaves for a couple of years then runs out of oomph (generally). Whereas other sorts can reappear more easily many years later. So triple negative has some advantages sometimes. They'll watch what chemo does to it, then consider best options.

Thanks amber. Am having a really wobbly evening tonight and no one here for a hug so your comment is really appreciated.

thornrose, just on your mum you could research local cancer centres to her as lots offer holistic therapies such as acupuncture for free. I think the thing to do is to try and find her ways to help her sleep. Better to stay on Tamoxifen if she can it gives you much better odds against recurrence. If she really can't there are other drugs she could try. They all have side effects though.

Really, odd reaction is maybe normal as this is all so hugely odd. Biggest shock is initial diagnosis of cancer and you've already been through so much. You know now how much they can do to zap it. Still think you deserve all our hugs though. xx

Speedy, listen to our Amber for she is v.wise. Just wanted to add that 18mm isn't that big - anything under 2cm is considered on the small side I think. I had FEC-T. 4 years ago now. You'll feel better once you've started . I know that sounds odd, but once you're started and know how you'll react you can cope.

Is this the only place on mumsnet where it would be acceptable to keep a spreadsheet so i can keep up with who needs a hand to hold, fingers crossed or a big hurrah? really - crappy news but at least you now know, the unknown is a very scary place. Probably irrelevant, but my friend had a secondary tumour in her liver from kidney cancer, and it disappeared by itself while her primary tumour was being treated - oral chemo only. Anyway, thinking of all of you lovely people. Two weeks until my bi-mx. Talking of which, how are you doing harriet?

thanks smee
Have stupidly googled and everything says about triple negative having a lower survival rate. I have been trying to keep myself positive and hold it together for my boys but am having a 'scared' evening. Hopefully a good night's sleep will help.

just catching up after a mad couple of days

really - sorry to hear your news, but has already been said, a number of potential treatment options.

foo - glad you are doing ok after your ANC

thorn - I think evening primrose oil is also supposed to help? Also some Drs will prescribe gabapentin to help.

speedy - amber is our resident "wise owl" who always knows just what to say to quell a panic. :)

to everyone