Breast Cancer Now Forum

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 ... View more

Hi Mel, Glad to hear your margins are clear, but sorry to hear that chemo may be on the table. Must be a shock to hear the tumor was so much bigger, I know mine was larger on the MRI than the ultrasound, but not by that degree.  Regarding chemo, my completely uneducated laymans suggestion is that when using the Predict tool, the larger the tumor size the higher the additional benefit of chemotherapy on survival rates. So if the benefit of chemo has gone from say 2% to 7% due to the tumor size then it would make sense they are now recommending chemo.  Hope the test results come back saying you don't need it though! All the best, Pye ... View more

Hiya Sparkle, 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. Pye xxx ... View more

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  😄 ... View more

Hey Delly,  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  😋 Pye xxx ... View more

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.  ... View more

Hiya Evie, Thanks for replying, no your story is not too late in these strange times! I've found information regarding the pre prectoral implant you had. That's very interesting, sounds ideal for me especially as it mentions more suitable for women who exercise in the article I read. I'll have to familiarise myself more with the different types, i.e. the tissue reconstruction sounds like it gives very nice natural results, but I don't fancy donating other bits of me! None of them are perfect I guess. Appreciate you taking the time to reply, many thanks, Pye ... View more

Hi Sarah, Thank you for the reply, glad to hear it seems standard advice regarding the radiotherapy and reconstruction despite the NICE guidelines (which of course are just guidelines, every case is unique and all that). You make a good point - radiated silicon doesn't sound clever does it! I'm imagining a microwave meal gone horribly wrong lol.  I think you're spot on about the tissue reconstruction - it will be a nicer result in the long run.  I have another two months on the Tamoxifen before my next telephone consultation, so we'll see what that brings.  Hope you are recovering well from your surgery and that your radiotherapy goes smoothly! Pye ... View more

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!  ... View more

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! ... View more

Hi, 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-p/1330832#M9592 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-order-you-have-treatment-for-breast-cancer-neo-rt. 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!  ... View more

Not sure why, but the one that pisses me off the most is a cheery 'You'll be ok!' Closely followed by anything referring to how strong I am, what a survivor and similar absolute bollocks. Feel better for a bit of a whine, thanks  😄   ... View more

Many thanks for the reply Pawsome, and confirming the sentinel node biopsy will be done at surgery time.    Yes big relief with the sick note, you're quite right i just need to keep on top of the requests for the notes now i've got a 'start'. I've got a reasonable sick pay allowance, but this is going to take a massive chunk so i'm going to have to be aware of it diminishing and plan as you mention. Feel guilty i'm not going in for the next few weeks before surgery really, but mental health needs nursing too so i'll let myself have this one!    I work a very physical job on full time nights so returning during/after treatment isn't going to be easy, although they'll be happy to do a staged return with fewer hours at first etc. Going to have to hit the gym to try and keep my strength and fitness levels up in order to make returning less painful.    But i'm feeling pretty positive tonight all things told!  ... View more

Just an update. I've got a 40mm grade2 ER+ lump....   Need an MRI for them to determine if a lumpectomy or mastectomy is required. Sentinel node biopsy will also be done (am I correct in thinking this i usually done during surgery rather than prior? Got info overload a bit today).    Hospital gave me a 4 week sick note which was a massive relief. Not up to dealing with work even though I'm physically fine.    So I still have many unknowns, but feeling a bit more together than I did before today's appointment.  ... View more

Hiya Jan,   So very grateful to you for taking the time to read my post and reply. Having coped to a reasonable degree the night before my appointment I feel like i'm awaiting sentencing... "to the scaffold with you Pye!" So i'm reassured by your words.   1. Re seeing the surgeon, if I'm up for surgery first I'm pretty happy with that as i have no fear of surgery in itself.  Although losing breast/s is a whole different psychological ball game which I'm potentially about to deal with.    2. Thanks for the comments about work, as mentioned in my reply to Pawsome i'm happy with my local managers, it's the archaic structure above that chills me somewhat. But in the grand scheme of things, if I miss out on a weeks sick pay so be it I suppose.   3. It's not exactly good to know, but being aware your diagnosis and treatment strategies changed so much is a great heads up for me. I need to accept that things will change as my tests and treatment progress, my preference (as i'm sure everyone's would be) is for a nice set agenda I could just be given to plough on through.   Interesting you saying the appt after surgery is the key one, but I can see that makes sense. As of course does avoiding googling - i googled but was defeated completely having no idea what flavour of BC I have as yet. After tomorrow's meeting is going to be the google danger days for me. I will try my best not to...   Your time and kind words are very much appreciated, Pye ... View more

Hello Pawesome,   Thank you so much for taking the time to read and reply, i really appreciate it. I've lurked here since before my diagnosis... knew what was coming really so it's helped me gird my loins somewhat.   I've only my partner available to take with me (no friends or family locally) who is wonderful and supportive... but I'm not sure how objective his listening skills are! I'll certainly take a notepad and pen, maybe a tick list for grade, her2, hormone receptor etc?   My appointment card has a phone number and a list of contacts on it e.g. Macmillan Clinical Nurses, Macmillan CSW, Health Care Assistants, but noone explained who they were or if/when it was appropriate to contact them. I'm sure tomorrow that sort of thing can be addressed.   Good to know about GPs - i'm happy my local managers will be very supportive, but I work for a very large employer and the HR dept is just a remote machine... 'this box isn't ticked? you are not getting paid!' zero flexibility available. I'm fairly hopeful that the request I was able to make via the GP receptionist for a sick note will be actioned, although she confirmed they'd not had anything from the hospital regarding my diagnosis as yet. If need be I'll just have to trot up there on the day my self cert expires with whatever paperwork I have from the hospital and see. I only have so much sick pay to come so would like to work as and when I can through treatment, but now just isn't the time!   Many thanks again, Pye ... View more