Sandpiper — congrats is the right word to use as far as I am concerned! Thank you. 🙂
The lab results showed tamoxifen did NOT shrink my tumour. So getting my mastectomy as soon as I could and not waiting for immediate recon was the right decision. Luckily the invasive tumour hadn’t grown either.
Chemo is next for me, starting after I’ve had a heart scan. Already had CT with contrast which came back OK. Then radiotherapy, then back on hormone tablets, though possibly not tamoxifen. They briefly mentioned chemical menopause so that I can go on AIs, but that’ll be decided after chemo is over.
Bring on the next round!
Congratulations - just saw your post! Not sure if congratulations is the right word, but am very relieved and pleased for you. Two months or so of worrying about whether the tumour is shrinking is not a lot of fun. Hope you have been recovering more and more as the days have gone on. I think it takes about two weeks for results to come back so you should know when you have your follow up appointment.
Good morning all,
I’m sorry for being AWOL for a bit, but, drum roll and klaxons please… I had my surgery!!!!!!!!
Single mastectomy and full node clearance. I wanted immediate reconstruction but I wanted the cancer gone more. So I’m going to have to wait however long for reconstruction, probably two years, who knows. Mentally I don’t think I could have coped much longer, even if they had been monitoring the lump and it was shrinking. I just want the bastard invaders gone.
So, rather sore, seriously uncomfortable drain, stiff shoulder, but I’m hoping they got it all. I don’t yet know when the drain comes out nor exactly when I see the surgeon for my follow up. They said about two weeks but I think it’ll depend on the drain removal too, I’m assuming they’ll try and do both together to minimise going in. Plus also I guess it’ll depend how long the lab takes to do the tests as well.
I can’t say how happy I actually am right now that things are happening. Such a massive relief. I feel like me again. I have no idea how much of the dark stuff was down to tamoxifen (which I stopped a month ago) and how much was down to just the stress of waiting and nothing seeming to happen.
Now I just need to get through the next couple of weeks…
Sparkle - Glad that things are moving for you now that's a massive relief. I see so many here saying that the waiting is the worst part and they're not wrong. I sympathise with the letrozole vs tamoxifen confusion - just been reading letrozole is more effective for lobular which is the sort I have. Although I think from what the surgeon said I will be swapped to letrozole in the future so not going to fret on this issue for the time being.
Sandpiper - thanks for the words of encouragement! Lump shrinkage is not now a major worry as per my update, although some would be nice to see as an affirmation that the Tamoxifen is doing its job - still only been taking it for 9 weeks so there is plenty of hope yet.
Dear Delly - thank you as ever for the giggles and support of your posts. And your wonderful PM - which I am replying to this weekend. Sorry for the delay, but the wonder of having stopped taking the contraceptive pill means I now have PMS grumps again and can't be bothered with anything while in that mode!
As for me, I had my telephone appointment and the upshot is I am just going to keep on munching the Tamoxifen until mastectomy with immediate reconstruction is available again. I'm very happy with this - my main reason for wanting the lump to shrink was because he said I couldn't have an immediate reconstruction due to needing radiotherapy. However he didn't mention radiotherapy this appointment and has now agreed the immediate reconstruction. The inconsistencies in what I'm told is concerning though, got this niggle that in a few months time it'll be 'oh woops, nope sorry, you'll have to have your reconstruction delayed'. Time will tell. And yes I know I should mention it to him to clarify...but I rather like this sand that I have my head stuck in for now!
Take care lovelies, Pye xx
I remember being told that shrinkage of tumours is not noticeable on scans for around three months - I remember being worried when I was told they looked the same after two months - I had pressed for an ultrasound to see. It didn't mean that they hadn't but ultrasounds not being sensitive enough to pick up the small to start with changes I was told. But shrink they did, though each one at a different rate and my the time I had surgery one hand practically gone and the other half the original size. The shrinking seemed to gain momentum the longer I was on it (around six months).
Hope you're feeling a bit better around it all - sounds like you've having a quite a struggle with your treatment team. Wishing you some good news - you deserve it.
Delly - it will be my first year mammogram - no news as yet as to my appointment. Part of me expects that something suspicious will show up on my 'good' side! I'm normally an optimist.
Sparkle - hope you're doing okay as too.
Sparkle - Glad you're feeling a little bit better, but not surprised in the least you and others keep having meltdowns. It's only natural when having to face and cope with this BC (BL**DY or BROWN C**P!! 😉 Other alternatives for BC welcomed!!) This Forum's a great place to have a good rant, sob, moan, it being in the company of others who can truly empathise with yer.
** What d'ya call a man with a spade on his head? . . . . . . . . . . . . . . . DOUG !! **
Pye - Yeh - I forgot to mention the pizza and gallon of beer diet sounded faaar more exciting than the ffflippin flax seed one. Apologies for my last pm being another looong one - hope it didn't upset you. Are YOU okay, and any further news on anything more for you yet ? BTW, If you are "concerned" about your surgeon's seemingly lax communications, I would have thought your BCN would be a good person to speak to and explain any of your concerns to (in confidence if you're sensitive not to cause upset to the surgeon). Also, I would have thought they would attend the MDT meetings? You may even wish to see a different surgeon if you aren't feeling happy. Have you thought about contacting the "Help/Nurse" on here for a chat, advice?
** What d'ya call a man withOUT a spade on his head?? . . . . . . . . .DOUGLAS !! **
Ohhh stop groanin xxxxxx
My head’s back in a slightly better place again. Thank you all for the kick up the bum!
It looks like I might be getting surgery a month from now. Maybe. Hopefully. I’m waiting to see it in black and white! Have to isolate for 14 days before surgery — which I was expecting. Part of me is terrified, but it’s a huge relief to actually almost have a date now. I can see a plan being set in motion now, which I couldn’t before.
Sandpiper — any progress for you with the mammo? I don’t know how long they book them in advance for as I’ve only ever had one and that was under the two week referral thing. Hopefully they’ll get you booked in soon though.
Pyewacket — I can’t believe the way they handled your appointment. That’s shocking. And they didn’t put any clips in after all?! I don’t understand why your surgeon needs permission for a biopsy. I had two biopsies at my initial appointment, one was the clicker thing using ultrasound and then the second was I think called a core biopsy. It took about 5 samples in one go and was done using the mammo machine. I could understand your surgeon needing to talk to the MDT based on the results of another biopsy, but not to ask to have one done. That really confuses me. Have you heard from them since? Either way, I hope you’ve had pizza and beer! I’ve been told I can’t have immediate reconstruction either, and I hate the idea of that, but I want the cancer gone so I’ll have to deal with it I suppose.
Delly — the clips are tiny little titanium (I think) markers that are inserted inside the tumour/inside the area they biopsy. It’s so they can tell exactly where they biopsied if they do them at that point. (I had one put in at the time of biopsy, then they had me back in for another in my big lump later on when they must have realised I wasn’t getting immediate surgery, so they might need to know if the thing is growing… or shrinking.) I think it’s just one marker as a reference point rather than a series of them as a boundary marker. Definitely they didn’t put boundary markers on mine! Thank you for cheering me up though, really appreciate it!
Hi Sparkle, Sandpiper and Pye.
Oh dear - you poor girls. I'm tempted to offer to tell my limited list of Xmas Cracker jokes, try and cheer you all up a bit. They're so bad, they're groaningly laughable at. Everyone else on this forum has heard 'em all before!! What do you call a three legged Donkey?????
Sparkle - Stop talking rubbish about "not having surgery", otherwise we'll all come and sort you out. Won't we girls?!!! What are these "clips" that a couple of you have mentioned. Are they internal, and to mark the boundaries of your tumours, so that shrinkage can be detected and monitored? Ref your monitoring - have you contacted your BCN to find out the monitoring situation?? If not, why don't you give her a quick call. It is what they're there for, lovey, to give you a contact link for advice/help inbetween appointments, rather than wait on info. (Sorry Pye, have just read you'd said more or less the same in a much earlier link. Great minds 'n all that me dear).
Sandpiper - Yeh, I'd read on-line somewhere it takes at least 3 months of Tamox to begin its shrinking action. Good to hear you are okay, bar the tabs. Is the July Mammo for a year's check up?? I can remember having yearly physical check-up appointments (didn't have Mammos because double mast) and them being upsetting, bringing it all back to the fore, but a bit less upsetting each time. Then being signed off after yr 5 exam gave a rush of "relief" and "freedom". Twas celebrated, heehee!!
Pye - That sounds like a very frustrating appointment you had with your consultant. Does he usually ask you to fill him in on the details?? Would be somewhat disconcerting to me, I have to say. Was the previous biopsy you had on your second mass a "needle" biopsy? If so, this second one may be a "Core" biopsy? Or was your first biopsy a "Core" one, where they take a larger piece of tumour tissue using a very thin barrelled gun type gadget that has a trigger, shoots a little gripper out of the end, grabs some tissue and snaps back in again. Sounds like something from the "Alien" horror film, doesn't it.
I hope you both get "shrinkage", on the bits you want to shrink that is!
And the answer is . . . WONKEY of course. Oy, stop booing you lot 😉 I've lost my Emoticon button on here - is it just me? Is there something I've clicked off by mistake??
"I'm" clicking off now. Lotsa love to everyone xxxxxx
Sorry to hear you've not had any news and that you've had a bad spell. Still nothing forthcoming?
I had an appointment at short notice yesterday to get clips put in, didn't end up with any though. Ended up with the consultant radiologist and my surgeon in the room looking at my imaging and discussing the case while i'm laid there half naked and my brain is till in bed. I was completely unprepared for a discussion, just expected a 'practical' session. I'd also only had 2 hours sleep as I'd worked the previous night, and had been kept waiting for an hour and half in my foggy headed state.
My surgeon clearly couldn't remember me or my case as he did the classic 'oh tell me what your understanding of where we are' thing, after saying 'oh have we met?'. I asked about radiotherapy before surgery to help shrink the lump, no. I asked about chemo before surgery to help shrink the lump, no. I asked about letrozole rather than tamoxifen as it's better at shrinking lumps, no. Reiterated again i was aware mastectomy was probably wisest but i found a delayed reconstruction unacceptable. He reiterated they weren't offering that and didn't know when they would be.
After 7 weeks of tamoxifen my lump hasn't shrunk, although the initial technician said it looked a little less dense in the middle, the consultant radiologist just dismissed that.
They'd identified and biopsied a 2nd area at my original appointment, and the results for that were unclear. As such the surgeon suggested we could take a more thorough sample of that area (can't remember the name for it), which seemed sensible, but he needed to discuss that with the MDT before going ahead. So off he goes, no doubt with the theme tune to House playing in his head as he swept out of the room. How he can deny further presurgery treatment such as radiotherapy as he sees fit, but cannot OK an area to have the bigger better biopsy without the blessing of the MDT beggars my **bleep** belief.
After he left the consultant radiologist had another look at me and at my original ultrasounds and declared the 2nd area had actually just been a cyst and was nothing at all to worry about. I'm hoping she actually communicates this to him...
So now i'm waiting for a telephone appointment to discuss next steps, which should have been yay or nay for the fancy biopsy, but what it will be now I have no idea. And I'm so gutted my lump hasn't shown any confirmed signs of shrinkage, I knew I'd pinned my hopes too much on this happening really. I've been exercising like a demon, munching on flax seed like it's the bread of life and not even drinking in the hope of getting a good amount of shrinkage. Think i'll just get a pizza and a gallon of beer this weekend!
Actually feeling OK about it all today, at least I know some options I was hoping for aren't open to me so that's those put to bed. And i'm going to have to accept that unless a miracle happens shrinkage is unlikely. My current opinion (subject to change on a whim of course) is to just stay as I am on the tamoxifen and await the mastectomy with reconstruction being available. That then will bring the previous debate back that I couldn't have immediate reconstruction anyway as I need radiotherapy to the fore, although the NICE guidelines say its fine. A battle for another day there...
On the bright side at least I've had contact and I'm expecting a phone appointment in the next couple of weeks.
No news yet on mammogram appointment - I don't know how far in advance they book them. Can check with breast care nurse. Sorry you're feeling down at the moment - I have days like that too, like yesterday and tonight not sleeping. As your tumour is hormone sensitive I would have thought that was more important than being pre-menopausal though.
I felt better once I had surgery and would have worried if I hadn't gone ahead with it. Lumpectomy was a day case and recovery time not too long and not too painful, usually.
Take care of yourself.
Sorry I’ve been rubbish at replying. I meant to come back but having a few down days lately where I just can’t be bothered and am even wondering if there’s any point in having surgery when it’s offered. (You guessed it, I still have no date for anything.)
Sandpiper — I’m really happy that letrozole worked so well for you. I’ve heard similar stories from others I know, and Google searches are positive about letrozole too. It’s much better at shrinking tumours than tamoxifen is. That’s what causes my worrying if I’m honest — there’s just nothing saying tamoxifen does well at shrinking tumours in pre-menopausal women, whereas there are plenty of reports saying how well things work afterwards. Have you heard about your mammogram yet?
Pyewacket — how are you getting on now?
Delly — don’t worry at all about butting in, you’re not and are very welcome to chip in as much as you want! 🙂 Thank you for the link to the study. Sadly it’s not reassuring me with this bit:
“The researchers also found that a neoadjuvant aromatase inhibitor was more effective than neoadjuvant tamoxifen.”
It’s seeing all those type of statements everywhere that’s bothering me. I’m feeling like I’m in the middle of a trial I’d never have signed up for to see how well tamoxifen does (doesn’t) work right now.
I hope everyone else is doing better than I am!
Hiya Delly, yeah I read the same about Tamoxifen and bipolar, and my reaction makes no sense to me either. Don't get me wrong I'm not in a good place, just in a lot less **bleep** place than I have been for years! I feel like a hideous crash may be awaiting me, but will make hay while the sun shines 😄
Pye - The benefits very recently found from Tamox for BiPolar, are in helping calm, bring down the "Mania" states, presumably because it tends to be a depressant. When I took it following my 2nd BC, 2007 (47), and still premenopausal, I only stood it for about 2 months, as it gave me such major depression. I stopped it, feeling I'd rather have a better quality of life, compared to the possible risks of not taking it. So I'm still not understanding why it should be having such a "feelgood" effect on you? !! Unless you are a very "hyper" person?
Lots of love to everyone xxxxxxx
Woops sorry about my inability to read dates on posts, nevertheless, the hug still stands 🤗
After reading all the horror stories of Tamoxifen I was stunned to feel better that's for sure, though I saw it is used off-label for bipolar and my mental health has been trash for years so maybe I'm benefitting from those effects. Either way not gonna complain and long may it continue!
Thanks for the link re shrinkage, I think I saw that via another link somewhere and it's really positive reading. However I read some of the studies it references and the data there is not as good as I'd have liked, with less than half of tumors responding to Tamoxifen in one of them. However as per my post in the 'ask the nurses' section a lot of studies are in their infancy regarding neoadjuvent Tamoxifen in premenopausal women, and I'm hell feeling lucky... so got my fingers crossed 😋
Sorry, a quick PS, and apologies if someone has already made this comment - I haven't read through all of your posts on this thread.
Pyewacket - Where on earth are you getting hold of your Tamoxifen from???!!! I've never heard ANY one say they've felt BETTER on it. Sounds great. Want some ! 😄
Don't know if any of you have read this link, hope it's of some use. I was just fascinated to hear and read on here, that Tamox is now being used as neo-adjuvant treatment for shrinkage, and can be very successful with some larger tumours.
Firstly, I'm sorry to butt in on your thread Sparkle, but I'm actually chasing Pyewacket from a notification I received in my Inbox, very kindly (or strangely) giving me a "hug" to a post I made on "Progesterone, Other Hormones and Fluffy Cakes", ages ago - 21. 09. 2016 !! I'll pop over to your Radiotherapy thread, Pye.
To all of you - BC is bad enough to cope and deal with isn't it, without all this Corona virus s*** complicating matters and adding to already difficult decisions. So I hope you can all manage to stay "up-beat" and strong till it's over. I'm an "oldie" ref BC, 2006 and 07 (aged 46/47), so I wanted to sympathise with you all whilst here. X
Hope all your treatments and surgery go well and you all recover well and speedily.
Lots of love to everyone
Delly xxxxxxx ❤️
Sandpiper - intersting to hear of your experience thank you, good to know these lumps do actually shrink.
Sparkle - I couldn't agree more, they must have a strategy for monitoring so not sure why they can't share it. E.g. ultrasound or mammogram at 3 months would seem the minimum appropriate and be reassuring for us. They're not instilling confidence in me at all.
I can't stop checking my lump, one minute I'm convinced it's shrinking, the next I'm certain it's grown... so I'm certainly not a reliable monitor that's for sure!
Have you called your breast cancer nurse to ask about monitoring? If not think you should do, see if you can get some info out of them.
Going to call mine before my telephone appointment and ask about getting radiotherapy before surgery. I have a feeling they have these multidisciplinary meetings then the surgeon just calls you and tells you what's been decided rather than you getting any input into the process, so want my wishes to be at least considered when they have these meetings and decide what to do with you.
Pye — glad that you have a phone consultation booked in, that’s a start! Hopefully you’ll be given a surgery date then.
With my hospital while they might not know when they’ll do my surgery still, they could have at least said right at the start that they’d have me in for monitoring the lump after x weeks or months, if I’d not already been booked in for surgery by that point. That’s what bothers me, they haven’t even told me that they’re going to monitor me — or then maybe they’re not going to do any monitoring at all. I’d really like the backup of being monitored after two or three months, because if this thing is still growing I want surgery ASAP and would consider going private in order to get it, whatever it costs.
Being chilled out on Tamoxifen is a good thing, because it beats being stressed out on it! 🙂
Last year I was given Letrozole prior to surgery to shrink the two lumps (IDCs grade 2) I had so I could get away with a lumpectomy and rads rather than an immediate mastectomy. I had lumpectomy six months later and continue on the letrozole for another four years. I was monitored by ultrasound after three months which showed they were shrinking ok but slowly .It takes that amount of time for the effects to begin to be seen. Had second ultrasound shortly before surgery one had almost disappeared and the other was half the original size. They were same type but responded at different rates. My nodes remained clear thankfully, and I managed rads okay. Just wondering now if my mammogram which should be due in July, will be postponed. I did worry all the time through it though, is the treatment working or is it spreading, so I do feel for anyone whose's in the same position.
So hopefully all will be okay for you too.
I think it's just that they can't give realistic time frames at the moment rather than not being straight with you, I imagine things are changing day to day within the NHS at the moment. Since I posted I had a letter through to say I have a telephone appointment with my surgeon on 30th June, so that's a full 3 months after the last time I spoke to him. Works OK for me and my hopes for shrinkage... but still seems a little, well slack really. Sympathise with the phone and waiting for the postie thing, it's a nightmare, at least I can just ignore everything for a couple of months now i suppose!
I've been fine on the Tamoxifen physically, I take mine shortly after I get up. It's made me weirdly chilled out though, for example I just don't care that the house needs cleaning, when it would normally get on my nerves. Can't quite decide if this is a good thing or a bad thing!
My lump is smaller than yours (2cm ish), and they put clips in a couple of weeks ago. I’ve had no contact from the BCN since then though. They’re not answering at all with how or if they’re going to monitor me, nor how long I can expect to wait for surgery, though they’ve said surgery could be within a couple of weeks or two months — they said that well over a month ago of course.
My gut instinct told me them putting the clips in meant it’d be weeks if not months before surgery, because why else would they bother? They’re just not being straight with me. If I knew they’d be having me in after 3 months to monitor the response I’d be able to relax a little. As it is I’m constantly listening out for the phone, waiting for the postie and constantly checking my email in case they get in touch!
With the Tamoxifen I’ve only been getting some slight flushes overnight and early morning. (I take it about 9pm.) I’ve woken up overnight to use the bathroom literally twice and thought I’d had a night sweat — if those are a regular thing for me I’m sleeping right through them all. I did have a little nausea which I’m blaming Tamoxifen for too, but that’s gone away now. I’ve not noticed much of anything else. How are you getting on with it?
Think there are quite a few of us in the same situation, having scanned the Macmillan forum as well as this one. I'm thankful that at least Tamoxifen is an option for me and gives a bit of breathing room (trying to look on the bright side here...).
I'm not eligible for the trial due to a secondary area either, nor am I in the right part of the country. I can only seem to manage a certain amount of 'research' at a time before I stop taking the information in, but am still trying to dig up further detail on tumor shrinkage. Just doesn't seem to be much there especially for premenopausal. The NICE guidelines have a table of studies but most of that is post menopausal.
My team haven't given any sort of schedule for monitoring me. Which I hadn't thought about really until my manager asked last week how often I was seeing them and not to hesitate if I needed time off. They had of course said 'call with any questions' but beyond that have been left to my own devices.
Having said the above I have actually now rung and said I'd like to go ahead with having some clips put in (didn't seem much point when it was initially mentioned as my lump is 55mm, not likely to disappear overnight). So at the moment I'm awaiting an appointment to go for the clips.
Have you had any advice regarding how/when you will be monitored? One of the studies I read suggested the lump should be reviewed around 3 months as shrinkage would be occurring by then if it was going to, so I've got that in my head as a milestone.
How are you getting on with the Tamoxifen? How long have you been taking it? Weirdly I feel the best I have for years!
Thank you so much for replying, it helps to know I’m not the only one in this situation!
Sadly I don’t qualify for the trial you linked to as I have multiple areas with cancer, but it was an interesting read nevertheless.
Have your hospital told you how often they’ll be monitoring whether the Tamoxifen is working and how they monitor it at all?
I'm in the same position, week 5 of Tamoxifen. I asked the question in the nurses section here https://forum.breastcancernow.org/t5/Questions-about-primary-breast/Tamoxifen-and-tumor-shrinkage/m-... as I couldn't find any solid data.
I spoke to my BC nurse and she was very positive about results in other ladies she'd seen taking Tamoxifen who were unable to have surgery for various reasons, but was unable to provide data.
Was interested to see this clinical trial - not eligible but wish I was https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-at-changing-the-....
At the moment I want to give the Tamoxifen at least 3 months to see if it is shrinking my tumor. Current state of play means I need a mastectomy, which I'd be OK with if I could have a reconstruction but that's not going to happen with the Covid19 situation. So ideally it may shrink enough for a lumpectomy to be viable, or at least stay stable to enable me to wait until mastectomy with immediate reconstruction is available once more.
Also considering asking them if I could have radiotherapy prior to surgery as per the aforementioned trial, not sure what they'll say about that!
Has anyone got first hand experience of taking Tamoxifen as their first method of treatment before any surgery or radio/chemo? Pre-menopausal so I can’t take anything else.
I’m wondering if it actually works for shrinking tumours or not, as my hospital won’t do surgery yet due to COVID-19.