All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

I think the new NICE guidelines state that OncotypeDX testing should be offered to people with ER positive HER2 negative node neg cancer. AFAIK if you have nodal micro metastases then you are considered node negative so for these people it should now be easier to access.

I hope everyone is having a good weekend. I still have a bit of a chemover, but I'm looking forward to needing less rest as I recover. Joan I hope your consultant gave you some reassurance about what is happening with your tests, and you get your MRI date soon.
Pepper I hope your final chemo is being kind to you.
I hope everyone waiting for results is managing to keep it together.

I am seeing my consultant shortly to discuss the latest biopsy results and a treatment plan so will definitely mention it then. Don't know what type my cancer is yet but if I can have the test I will go for it.
Hope everyone is feeling as rested as possible. I have been for a walk and now feel like a nap

Phone call from hospital at 8:55am this morning inviting me to the MRI at 12:40 today. Not a pleasant experience but hopefully one step closer to getting sorted. Am now terrified for the results, which will apparently be available Wednesday so should get a call Wednesday pm - either more biopsies or carry on with excisional biopsy as before. Got a horrible feeling I will need more biopsies - feel like I am going to cracking up any moment now. My poor children

I used to post on here up until a year or so ago and I recognise a few of the old names - 'waves hello'! - but I dropped off when mumsnet got hacked as it coincided with me finishing my rads and I kind of felt I needed a break from cancer.

Anyway, quick recap - I was diagnosed in July 2014 with grade 3 HER2+ ER- IDC and had chemo, two WLE and clear SNB followed by 4 weeks rads plus herceptin which finished in November 2015. I had a clear 1 year mammo and passed a physical check with the oncology team in January this year.

Roll onto now.... 2-3 weeks ago I noticed a 'lump' near my scar tissue which resulted in me spending most of today at the hospital having it checked out. The consultant examined me and said it was most likely scar tissue or fat necrosis but as I was due a mammo around now it would make sense to go ahead with one.

So I had the standard images and was then called back for more...and an ultrasound... and a biopsy. I saw the consultant again and she said that whilst the images don't give a clear cut answer, and there is still a chance that it could be scar tissue, on balance its more likely to be DICS either with or without invasive cells.

They're hoping to have some preliminary results on Friday, otherwise I'll have to wait till next Weds but at least they will have had their MDT meeting by then and will know what the treatment should be. I guess I won't be able to avoid surgery but hopefully I can give the chemo a miss this time.

I thought I remembered how bad the wait for appointments was from last time but nothing can prepare you for the sleepless nights and worry it brings :-(

anyway, enough about me, I'll try and read back through the thread to catch up with everyone else's stories

So sorry you're here again mintyneb worrying is so destructive isn't it :( here's a virtual hand to hold whilst you wait for results, and I very much hope you get some positive news.

Jo I'm glad you've had your MRI. Everything crossed for you for Wednesday

minty sorry you've got this new worry. Fingers crossed for it being scar tissue. And hoping they get you some results ASAP.

Mysillydog I hope your energy levels start to improve soon

Sorry not posting much at the moment. Chemo is going OK, not too many side effects. Though ended up in A&E having a barrage of tests (just the usual temperature precuations!). I feel a bit detached from reality at the mo, to be honest. But I am thinking of everyone and hoping you're all doing OK

Evening all.
Minty- Nice to see you again but sorry you're here waiting for results. At least you were onto the lump quickly and hopefully you'll have a clearer picture soon.

Sleepy & Lily- how are you doing?

Jo- glad your MRI is over. Thinking of you on Wed.

Hugs Leslie- A&E visit not good.

Hello to everyone else- sorry it's a quick dash in.

Evening all, thank you for your kind words last week, I still feel very tearful if I'm honest but much more under control, I had my last chemo and my PICC line out on Friday. Been a bit ropey with the SEs as had the zoledronic acid as well. No energy at all which is a pity as my fitbit arrived on Sat which is my incentive plan for getting fitter after this is all over - I ordered DH one as well as we're a tiny bit competitive!
Gosh, so much to catch up on.
Jo hope you get something definite on Wednesday and chewing you get a clear plan.
leslie it must do your head in to be doing chemo again so understand you'd feel detached hope your temp behaves,
Best wishes for tomorrow mrs and hope you're feeling a bit perkier mysilly , how are you getting on with your sleeve fresta? (have you started rads yet or was that rovercat? I'm getting myself confused!
nipersvest I think you get results tomorrow as well? Hope it goes well.
Thinking of rust as well and hope you and your baby are doing ok.
Waves to everyone else,

just popping by as, yes, pepperrabbit, i got the mri results today. have to go back next week for the biopsy results but seeing the consultant today was very useful. i saw a registrar last time, today i saw the head of the clinic who is a sarcoma specialist. he still can't be totally 100% sure, till the biopsy is back but he said it is most likely something called pigmented villonodular nodular synovitis, or pvns. it is a tumor, but the good news is, if that diagnosis is correct, its benign. i will still need surgery to take it out, and am going on the waiting list for this next week. am a bit sore as he fiddled around the with lump to show a student he had with him, and i'm still a bit bruised from the biopsy, but am feeling a lot calmer about things now.

good luck to all those here who are awaiting results and those undergoing treatment, you have my admiration for your strength and resolve x

Minty I don't post as much now but still read, I'm sorry to hear your news and the horrid wait for results. I hope it is just scar tissue if not it's good that you have found it early

Love to everyone x

Good morning all.
Hi minty and sorry you have to go through the anxiety all over again. We all live in constant fear of this. I truly wish it turns out to be nothing worrying.
Leslie hope everything goes well for you and you are spared the A&E from now on. How many more chemo sessions to go?
Mrs, do let us know how your appointmnet goes today. Wishing you receive the most reassuring of news.
Pepper, great news that you finished the chemo! I totally understand the mixed feelings.
thunking of everybody awaiting results and wishing you all a good day ahead.

Hi minty, so sorry to hear you are going through testing and waiting again. I was diagnosed just a couple of months before you and have had clear checks since but the fear is always there. I hope it's the least bad if all possible outcomes for you.

I've got my appt with the gynaecologist this morning.

Hello to everyone.

Hope he / she reassures you mrs

Sorry to hear that Minty

nipers good that you got some reassurance, and fingers crossed for it being that. Keeping them crossed for your biopsy results

mrsrhod good luck with the gynaecologist today

royal they've just said 12+ cycles. I guess it depends how it goes :)

pepper congratulations on having your last chemo and having the line removed. No wonder you're exhausted. It does take such a toll on the body. Exciting about the Fitbit though :) I have one too, though have lent it to my sister for now. I was terribly unfit by the end of chemo last time but I used a pedometer and gradually built my step count up.

I hope everyone has a good day

Feeling a bit low today. Saw my doctor for the first time since diagnosis and she was so nice that I blubbed. I have been off a few weeks with anxiety and my new sick note mentions the cancer so seeing it in black and white made it all more real

Chewing

I saw the very lovely gynaecologist this morning. The results of the hysteroscopy were fine, nothing alarming was found. So it looks as if my body is not quite ready for the menopause and is still producing enough oestrogen to force intermittent bleeding. As my cancer is 8/8 ER+ this is something I need to think about. If I have no more bleeds that would be a sign that the oestrogen is being suppressed efficiently but nobody can predict that. If I have more bleeds it would be worth moving towards a hysterectomy.

He explained the different ways tamoxifen pre menopause and the post menopause drug work. I've arranged to speak to my BC nurse tomorrow to discuss the drug bit further and understand the consequences of surgery on further treatment. So a bit more to think about. I've got a follow up appt in October, unless more bleeding happens over the summer.

I'm not keen to have more surgery particularly if it's just to stop the bleeding. However if the tamoxifen is not shutting things down as well as it might be then I need to protect myself.

I know at least one person has had their ovaries removed here but has anyone current, or reading but not posting, had a hysterectomy and what was the thinking behind it? I haven't had any genetic testing, that was mentioned.

Hi again mrs. That is really good news that there is nothing worrying about the bleeding, but I totally understand your concern about it being a sign the tamoxifen is not working the way it should and what that could mean. The gynaecologist you saw seems great!
Cheiwng, we continue to hope it is but a nightmare but as you said when it is there on paper it does knock us off balance. I also get how any act or gesture of kindness can trigger tears! How are you managing your anxiety?

Fingers crossed that you don't need further surgery mrsrhod
royal I have been prescribed anti depressants which are helping. Have been trying to keep myself busy and making sure I am doing some walking every day. I've been having afternoon naps but the doctor said to avoid these if possible as it's not helping my sleeping problems.

Morning Mrs, glad to hear there is nothing concerning. My tumour was also 8/8 for oestrogen responsiveness. When I expressed concern about my periods returning my BCN explained that it wasn't the amount of oestrogen in the body that was important and she didn't seemed concerned about whether or not my periods returned. She said (as far as I could understand it) that tamoxifen works by attaching to tumour cells (and normal cells as well I guess) thus preventing the oestrogen from locking on to them to enable growth. However, I guess less oestrogen can't be a bad thing.
Chewing, hope you are feeling better soon.
Lesley, glad you are OK, lets hope you don't need any more A&E visits.
Minty, hope you are only back briefly, good luck with your biopsy results, it must be a very worrying time again.

Pepper, I'm getting on OK with the sleeve, it's pretty comfy and only very light compression, although I'm only wearing it when doing heavier jobs such as ironing and gardening etc. I started my RADs today. So far so good, I feel like I should feel something so it's weird to think I have been zapped but not have any evidence except a few pen marks. The hospital have been really good at giving me times to fit in with the school day so I'm hoping to not have too much disruption to our day to day family life. I have taken the time off work, but dd has lots of after school events coming up as she is Y6 and doing end of term type things I need to go to. I think I will be sick of the daily commute to the hospital by the end though.

Minty I hope your return here is as short as poss...
Chewing seeing things written down on those official letters always makes it feel worse, doesn't it? I try to read and file away as fast as I can. Walking and fresh air sound good.
Fresta rads is weird, I think: you know something's happening but can't feel it in the moment. I hope it's gentle on your skin; I got away very lightly but I know was lucky in that.
Leslie feeling detached from reality sounds like an entirely reasonable response. I'm glad the SEs aren't too grim at the mo (unwanted A&E visits aside) and hope you've got some nice distractions.

Mrs I'm glad the results weren't too worrying, though sounds like you have lots to think about. On the subject of hormones, could anyone advise a bit? My periods packed up completely about 2.5 years before my diagnosis; the GP put it down to hypothalamic amenorrhea (bloods showed I wasn't producing oestrogen or progesterone) and advised me to try to relax and put on a bit of weight but wasn't worried as I wasn't trying to conceive. The onc team weren't very interested though at first they assumed I was menopausal and were going to put me on Letrozole until I mentioned it - I was 8/8 ER and PR. Now I'm worrying that there's something else going on or that the amenorrhea contributed to the cancer somehow. And is there any way of knowing if you've been through the menopause if you haven't had any other symptoms or if you go through it while on Tamoxifen? Do you think it would be ok to ask to get it looked into a bit more? I daresay it's not important and don't want to make a fuss at all but I'm fretting a bit. Really sorry for going on - I don't have anyone else to ask. Many thanks for this welcoming space to worry in; waving to everyone.

Hi Dinster. I can't help much I'm afraid. I have already gone through the menopause and had blood tests done that confirmed this at the time. I have had to stop HRT and may need to get my coil removed but will discuss this with my consultant next week. If you have concerns there's no harm in asking for more advice or a second opinion on that.

Hi Dinster, I had that very conversation about tamoxifen and menopause with the gynaecologist this morning. The answer was vague, you have been through the menopause when periods stop. But as periods stop (usually) on tamoxifen it's hard to know. They can do blood tests which might help but aren't conclusive, I'll be having them next spring. They can say that from a certain age you are probably through it. It all sounds very unscientific and my impression was that they take a guess. I haven't had any symptoms yet, he said I might just be one of the lucky ones. I'm 52 now so in the right age group, how old are you?

Interestingly my DD (22) saw a gynaecologist recently because she hasn't had periods for a couple of years. Blood tests showed she wasn't producing oestrogen or progesterone either. She had been very underweight, stressed with her degree and possibly exercising too much. He said once those things were resolved her periods should come back. Looks like he was right, degree over and a little weight increase and they're starting up again.

Logically if you are not producing oestrogen I can't see how that fits in with you having 8/8 ER+ BC. I think it's definitely worth asking for more information.

Thanks so much for the replies.
I'm 38, mrsrhod, and was told pretty much the same as your DD - only I didn't do so well on the de-stressing front! I think the oestrogen thing is about what's in your body rather than what your ovaries produce directly but it does seem a bit odd. It's weird how some things are so precise and others are just a bit of well it might be xyz, so we'll give abc treatment a go... I'll pluck up the courage to ask more. Thank you!