Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

[foofooyeah]

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

Hi all
I haven't posted on this thread for a while now but was a regular here last autumn when I was going through diagnosis. I ended up with a mx and reconstruction for extensive DCIS and am now on tamoxifen which has not been trouble free, but overall I consider myself very fortunate so far

I valued the support and information on this thread and I remember both laughing and crying at Amber comment "about as likely as finding the Pope in your en suite tomorrow morning" when I was terrified that my cancer might have spread. Her deadpan delivery of that very funny image put it all in perspective for me.

It's true that knowledge is power but to be able to exercise that power we have to be accepting of how the knowledge applies to us as individuals and I think that acceptance is incredibly tough. It's certainly something that I struggled with last year. I guess we all have to find a way of dealing with the reality of our situation and that can be a struggle.

Anyway that's my thought for the day and I'll bugger off again now. Good wishes to everyone and I hope that this thread continues to provide lots of fabulous advice and support to those of us facing some of life's harshest realities.

Waves at Marshy
I was on Letrozole for a time and found side effects more challenging than my current oral chemo.

I'm a bit older than most of you and was diagnosed with lobular breast cancer last June but a scan shortly after found some lesions in bones so have secondary bone cancer.

I had six rounds of Tax then went on to Letrozole. Further scan in January showed Letrozole was not working so am now on my 9th cycle of Capecitabine (2 weeks on, 1 week off, dosage 4k mg per day). Awaiting another scan on Friday, so am currently rather on edge! My treatment is palliative rather than curative but oncologist hopes to keep it as a chronic condition for as long as possible.

I have been back at work full time since beginning of May but have worked throughout treatment, remotely from home/short days in office.
Due to some misunderstanding I have never received copies of all my letters so am rather vague about the whole business. I can, of course, get the letters if I want but, at present, don't want to see any of them!

Hello Marshy and Lily*.

Marshy - what troubles have you had with tamoxifen and have you overcome them???? (Am asking a I have some problems myself.)

Lily - will you get your scan results quickly or is there another wait?

The Pope in the en-suite was an absolute classic statement that made me smile in some dark days - good to be reminded about that as it was so funny (and helpful).

KitKat - I have arranged to have a scan in the morning, then blood tests and see the Oncologist late afternoon. In between all this I am having a Clinique make up session, and have been told to report back to Oncology ward so that everyone can see the outcome (of the make up session, not the scan). I have a strange work arrangement which gives me pretty much the same as school holidays off and this will be the first day!

Marshy thanks for the wise words.

Lily I hope you have a lovely makeover and hope scan goes well.

Glad you are home elporto.

The 'tax' is beginning to kick in but no hideous stomach cramps yet, just tired if I walk round the house! Can't really taste anything either but as always "it will end".

Hope everyone has a good day.

marshy like kitkat I would be interested to hear what troubles you have had with Tamoxifen. Apart from the hot flushes I have had numbness/pins and needles in my right hand which wakes me through the night. My Onc thinks it's Carpal Tunnel Syndrome. After a bit of research it appears that 50% of pregnant women suffer from it which made me believe it could be hormone related. So after further searching I came across a possible link between Tamoxifen and CTS.

Hiya again
Re tamoxifen, I've been having vaginal bleeding whilst on it, though I was having that before I was on the meds however now everyone is far more excited about it and especially as I'm 55 and shouldn't be bleeding at all apparently.

So I had investigations - scans and womb biopsies via a hysteroscopy (ouch!) and all came back clear.

Whilst this was happening I took myself off the tamoxifen as I had convinced myself that I would whipped into hospital for a hysterectomy to get rid off womb cancer - that didn't happen.

Meanwhile I had a blood test and got results via gp which showed that I'm not through the menopause and will bleed for some time yet and given my age that is likely to be a bit irregular. Gp was quite insistent that I should have a mirena coil back in (it was taken out when I had the hysteroscopy). Apparently it protects the lining of the womb and obvs is contraceptive faints at possibility of pregnancy though is generally contraindicated for breast cancer but I guess I only has dcis so nobody seems concerned about that

So now I'm in a bit of a dilemma as I'm certain to get irregular bleeding but docs seem unhappy about bleeding on tamoxifen which means repeated checks to make sure womb lining ok - and of course presence of mirena interferes with the effectiveness of pelvic scans....Hysterectomy has been suggested but that seems a sledgehammer/nut scenario. Not sure how it will pan out. Seeing gynaecologist at the end of July.

I put myself back on the tamoxifen a while back and have had no hot flushes or anything else since restarting. These had been quite a problem the first time around.

Not wishing to derail the thread as most of this probably isn't relevant to anyone else so I'll leave it there. It is a bit pants to feel so embroiled with medics - I feel like I can't escape even though my situation was quite straightforward.

elporto, glad to hear you are home and ok. You're probably feeling delicate and the node removal is the worst bit but it improves quickly.

Re tamoxifen/mirena. This is something I have been meaning to discuss with the professionals but am embarrassed to admit I'd forgotten during rads. I've had the coil for about three years, it's in my records and was mentioned during initial appts. No one has suggested having it removed but a quick google suggests its definitely something to be concerned about. It seems to be contra indicated for women on tamoxifen. Has anyone had this conversation with their dr and what was the outcome please?

My Gp knows I'm on tamoxifen and was definite about replacing my coil for the protective effects offsetting the potentially adverse effects of the tamoxifen on the womb lining so I don't think that's the issue, but I know other women on this thread had to have the mirena removed once they were diagnosed. I didn't but I didn't have invasive BC.

Hipefully someone will be along to explain.

I'm glad the hot flushes have stopped at least.

Thanks marshy, I've only been here since May and haven't noticed a discussion about this. I'll call my BCN first thing in the morning, why do you always need an answer on a Sunday when everything's closed?

I didn't have a coil, but had an implanon contraceptive implant (which also releases progesterone) and was advised to have it removed asap as I'm ER+ & PR+. I guess if you are ER-/PR- then it isn't so much of an issue?

lily fingers x'd for your scan on Fri

elporto, I just wanted to add my congratulations and thanks that your op is done! and best wishes for a speedy recovery!

Mrs - I had a mirena and my onc let me keep it through chemo (as I pleaded) but was insistent that it came out once treatment finished. I aslo discussed it with my GP and she said if it was her she would have it removed. I was 8/8 for ER+ though. Have had no periods since tax though so I'm not bothered about it now .

Marshy - what a saga - that's the last thing you want when you think you're all done treatment wise.

Thanks kitkat, I'll make some calls tomorrow and see what the advice is. I'm erring on the side of having it removed, especially is the tamoxifen has stopped the periods. It's odd that nobody has mentioned it though. I hope I don't suddenly have to rush to do it before we go away on Friday, would another week make much difference?

Hello All, lots to catch up on. My mum had an acute stroke on Tuesday, awful, she is an academic and runs a small holding, she is now paralysed on right hand side with no speech, I know it is early days but not much improvement yet and she must be so frustrated and scared as this is her worst nightmare come true. Luckily this has happened at the end of my chemo cycle so I have been feeling absolutely fine to manage the hospital visits and additional care of my dad, also has taken my mind off of chemo number 3 planned for Wednesday. I have siblings and they have rallied round but I am the only local one. I will be very happy to see the back of 2014.
Enough of that, lots of posts I wanted to reply to. Firstly, can I just say I am impressed and a bit of those discussing contraceptives - the concept of needing any seems a distant memory and a massive hurdle to overcome. Sending best wishes to elporto after her op. I was up and about and functioning pretty well quite soon after discharge and driving within 10 days, but the node clearance is very uncomfortable (like carrying a sharp brick under your armpit) and does drag on. Do your exercises, they are tedious, I didn't and have regretted it.
minty your boss sounds like a total twunt. I can't help with any legal advise, and it matters on the size of the company about the flexibility for scope with HR, how long have you worked there? If financially you can not afford to lose pay, I wanted to share with you my experience of working during treatment (in the fortunate position that this was my choice). I had 4 weeks off after the op, I have lost track of what op you will have, mine was BMX and total node clearance, if I had not had the node clearance I could have gone back after 2 weeks if I had to, with the node clearance probably could have gone back after 3 weeks. Worked full time between op and chemo. Now that chemo had started I have the first week off as self certified and work the other 2 weeks as a phased return to work. This means that I am on reduced duties, and ramp up the hours from about 4 a day to full time by the end of the cycle. I must stress though that I am doing this remotely, don't have to go into the office and my managers have been the opposite of the toe rag you are dealing with. This isn't for everyone, we are all different, but wanted you to know that there are possibilities if money is an issue.
This has turned into a saga, so will be back tomorrow with some queries.

Buns - couldn't go to bed without saying how dreadful for your DM and your family. I hope you have the strength to help, but you mustn't overdo things (impossible in this situation, I should imagine!) Hope your DM can make a good recovery and that your chemo is going reasonably (could hardly say "well" for chemo!)

Buns - I was like you - worked part-time from home for the whole of my treatment- totally my choice and my work were fantastic about it all. I just needed to keep going to keep my mind off things. By the end I was only doing about 2 hrs a day though but did manage to log in every day for the 9 months . I'm sure it helped me get back up to speed quite quickly afterwards.

Elporto, so pleased to here that you're home after surgery and everything appears to be going well. I have no advice to give but would echo what smee said in that you've taken that first big step towards recovery - well done. I'm almost a little envious of you (having been given an initial diagnosis on the same day as you) that I'm not yet any further forwards.

Buns I am so sorry to hear your news. That must be difficult to cope with at the best of times let alone now. Make sure you keep looking after yourself though.

Thanks also for sharing your experience of working through chemo buns and kitkat. One of my problems is that I haven't really enjoyed work since my boss came on the scene at easter and a vile woman he has employed who likes to put people down. But I'm stuck with it for now and it can provide a bit of distraction. At least having negotiated a bit better sick pay, it will make the difference between having to work and working when I feel able. I've also discovered that provided you do at least an hours work at the start of the day before going home sick, it's only counted as half a day sick so there are ways and means of coping with the situation.

As for all these chats everyone is having about the mirena coil, that's territory I've never ventilated into - and neither has my GP :) so can't advise!

Ventilated?? Entered!! I do hate my phones predictive texting. Grrrr

Buns- just wanted to say am thinking of you and your family. Hoping your mum improves very soon.

Buns, just to add that I am also thinking of you, what a tough week, I do hope your mum improves soon and you look after yourself as well.

I am now 4 days post-op and managed to wash my own hair this morning: baby steps. Feeling very blank and low, not crying hysterically any more, just feeling like half a person. Hope this will change once I am not on such a cocktail of painkillers.

Buns, I'm very sorry to hear about your mum. My dad had a stroke shortly before my diagnosis. It's very scary for all involved, the staff were wonderful and he was lucky. I hope there's improvement soon.

Elporto, I think what you're experiencing is perfectly normal you're pumped full of drugs and in pain. Washing my own hair felt like a major step forward. Get lots of rest and keep doing the exercises, I've started mine since rads have tightened things up a bit.

I'm not much further along with the coil issue. My bc nurse is not answering the phone, my BUPA nurse was unsure and I've just discovered that my lovely gp is retiring today so I've not been able to speak to her either. She delivered my youngest daughter, back when they still did that and I cried at the receptionist when she told me. Maybe I'm not as ok as I think!!

Mrs - I don't think there is any urgency around the coil issue. I managed to keep mine for about 9 months after it was initally suggested it should come out so I'm sure the effects must be minimal.

buns hope your mum is on the mend very soon, hugs to you all.

elporto please don't underestimate the effect a general anesthetic has on your emotions, your body's been through a lot.

Don't think we've heard from becca for a while, hope she's doing ok.

Ok. Here goes.

Hello. My name is briteside. I am 37y/o with a 3 y/o ds (his Birthday today!!) and 5 y/0 DD.

Last wednesday I was diagnosed with stage 2 / grade 2 (hope I got that right) BC which is also in my lymph node(s?). As you can see - I am still getting my head around this! The last few days have been a whirl of tests, scans, scary discussions and even scarier decisions. We see the oncologist this Wednesday but it looks like 6 months Chemo followed by surgery followed by radiation. Followed by hormones (Depending on whether applicable, they didn't have all the test results yet).

I am feeling stronger today but had a very rough first few days and am still prone to random outbursts of tears. We haven't had my CT scan results yet and I am terrified of what else they might find.

I normally hang-out on the running threads and am generally active so it is a weird concept to think that it will all change.

I am off to explore the rest of the thread...and am holding back on the millions of questions I have (How bad IS chemo? What do I do about work? How do we handle the discussions with my DD? Why is my mother in law pretending this isn't happening?)