How’s the peeling boob hon? Mine sort of resembles an onion skin in the crease now but it’s not sore anymore, thanks to flamigel 
Well done @lottie73 for recommendation. You’re a godsend hon 
. Hope your back pain is easing off and your boob has stopped peeling (jeez, that’s not a sentence I ever thought I’d say to anyone! Lol!)
Anyone heard from Sheelagh? ….
Well, thanks to the magic powers of Flamigel, my poor boob is now feeling much more comfortable, less itchy, minimally flaky and gone from bright red to a lovely pastel shade of pink ! Thanks to you and @lottie73 for suggesting it. It’s definitely been a godsend! Hope everyone is doing well and enjoying the weekend. 
Hiya,
Had a lovely chat with surgeon today and she suggested (and I agreed) to coming off lovely Letrozole for 4 weeks to see if my BP comes down, to test whether it’s more likely to be the drug or just the mountain of 
I’ve been dealing with. She’ll see me again then to discuss next steps but interestingly said “Life is for living” and indicated she’s not averse to me stopping completely if I decide to.
I’ve learnt that all AIs, not just Letrozole, can cause high BP. It’s the AI bit that does it, so switching to another one won’t help my BP if that seems to be the cause.
If my BP doesn’t come down it’ll more likely be due to stress so I will need additional meds to bring it back to safe limits but I’m happy with the trial approach.
She asked what other SEs I’d had. Insomnia was top of the pops 
, followed by hurty hips/back/legs/arms, then the (unusual for me) bout of feeling low coz I got hit with it again last week. She didn’t ask me to do this but I’m going to keep a diary of symptoms for the next 4 weeks because, ironically, with brain fog I’ll never remember them all 
So a bit more progress from me, I’m hoping to feel more like my old self soon, and will take it from there.
Hope everyone is ok but understand that sometimes being away from here is part of the moving forwards. Sending love to all who read this x
Bxx
Hi Bella,
That’s pretty much the conversation I had with my onc about anastrozole. My bp came back down within a week of being off of it, fingers crossed for too 
I’m a few weeks off of it now and my energy levels and mood are much improved now. Aches/pains are getting better but my affected arm is still stiff and tingly.
I’m sleeping about 5/6 hrs a night now and most nights I don’t get up to pee or throw the covers off. And, of late, my hot flushes /night sweats have calmed right down.
I got really low moods and it felt like I was heading back to the days before I started hrt 
but that is much, much better.
Like you, I’m just looking forward to Christmas without the added SE. Tamoxifen is off the table for my because of gynae history so I’ve been asked to consider exemestane. On looking it up, I’ve got to say I’m not holding out much hope for an improvement over & above Anastrozole/letrozole. That one comes with added risk of blood clots/stroke. It’s obviously a serious risk as I’d need to come off of it for dentist etc 
So, I’ll be honest, I’m erring more towards stepping back and just carrying on with yearly mammograms. Thankfully I have good stats and these meds don’t give me that much of an advantage over 5 yrs.
definitely a good idea to keep a diary. It’ll be interesting to see how you get on.
Your onc is right “life is for living”. I may not still be 100% just yet, but I’m so much better now that I was on anastrozole. I don’t think I can face going backwards in the new year.
Not sure where the others have disappeared to, I guess you could be right about the moving on. I’m still here though 
All the best lovie and I hope you feel an improvement very soon. We all need to be able to function hon
Love & hugs 
Hello lovely ladies
I’m still here and love reading everybody’s messages. I will try and be more present 
Pleased that the Flamigel is working and I was able to actually give some useful info for a change! My boob is all healed now though the skin is still dark in places but that’s peeling away slowly and I’ve been told not to pick at it or rub it which is really hard when I’m soaking in the bath
My back has now healed and apart from a few shooting pains in my legs I feel like my old self. I’ve got a full blood test tomorrow so having to fast from 9pm tonight so band goes my “midnight” snack and cheeky vino! Still not started the Letrozole again yet as I’m too scared in case I have another bad reaction 
Think I might start on Saturday but will definitely take blood pressure first and keep an eye on that thanks to the updates from you girlies. Onc on the 3rd Dec so will hopefully get more information from her then. Finally got a date through for the bone scan, 5th Jan, which means I would have been on the tablets for 3.5 months so wouldn’t really have been a very accurate reading 
Hope everyone is doing okay.
Sending lots of love and hugs
C xx 
Hellooo!!! So happy to hear that you are doing much better now. That’s three of us on a break, so far…
Your boob sounds like mine. I’ve got this weird dark skin that is gradually coming away and leaving a pink patch. The flamigel is doing its thing. That was a great recommendation. Thank you 
And, I actually wore an underwired lacy bra the other day (lunch out with a girlfriend) and I managed to not keep “adjusting” like I had a bad infestation for most of the meal
I had a small glass of port after it though & the resulting hot flush was interesting thankfully I had my little bit of surgical gauze underneath to mop up a bit of the steam! 
It’s been a while since I rummaged in the lacy smalls drawer… it was nice to feel feminine. It was also nice to see my girls hitched up to where they should be for a change😜
That said, it was nice to get it off again and grab the gel and my pj’s
Re going back on letrozole: are you going to give yourself another weekend off ( I would 
)? Definitely talk it o er with your onc in Dec. You do need to know your stats too. How is your BP btw?
I can’t believe you haven’t had your bloody dexa scan yet!! It’s supposed to be a ‘base line’ … I quite agree with you, it’s hardly a true reflection of your starting point is it? …
I’ve got another ultrasound on Thursday for my affected arm/shoulder. I’ve got a lump come up on the back of my shoulder. They think it’s a bursa (?) … never had it before… maybe that’s BC related too . It truly is the gift that keeps on giving!
Hay ho, At least we are all free of our critters and still smiling (mostly)
Well, I better get our dinner on (yes, I’m actually cooking again! Albeit the washing up is still hb domaine for a wee bit longer - huzzah!)
Have a good evening boob babes! Lovely to hear from you again
Love a hugs
Hi Charlotte, so glad to hear that your boob has now healed well! Your recommendation re the Flamigel was spot on! My under-boob is very much better now , so thanks so much for passing on the info.
I see that you’ve got an appointment for a bone scan soon and I just wondered how long you’ve had to wait to get it. I was initially told by one of the nurses at the hospital that I didn’t need one but when I saw my GP recently and asked her why, (as I’ve been on Letrozole for about 9 months now), she said she would check with the oncologist and the upshot is she was told that I DO need one! But my GP said it could take 6 months to get an appointment! Maybe that’s an average length of time to wait for a Dexa scan and maybe it depends on what part of the country you’re in but it does seem to be quite a long time to wait for it. Anyway I hope you didn’t have so long to wait and that the results are good when you get them. Take care.
P
Morning! Brrr first frost down here 
Glad to hear the flamigel is working for you too hon. It’s good stuff. Just a shame we can’t all get it on prescription
Re your DEXA scan: you are supposed to have it when you start AI’s (or within a short time after starting). I’m down near Canterbury and had mine in the first month of being on it. I think most of us had it pretty early on, but there does seem to be a bit of a post code lottery for wait times it’s really not helpful, though, if your Onc doesn’t prod others to get this sorted. I don’t think GP’s are really involved in this stuff, it’s down to your MDT to trigger all this to happen. In my case, it was my oncologist. But for others, it’s been the surgeon’s team but they are all part of your own MDT (multi disciplinary team) and are supposed to coordinate your ongoing treatment and share info.
It’s my understanding that everyone (particularly post menopause) needs to have one to get a baseline level and then they carry on monitoring you all the while you are on it. That way, if the Letrozole starts effecting your bone density, they can give you other meds to protect you from osteoporosis.
That said, if, when you do get your first scan, it shows bone loss, they will be ‘on it’ straight away- regardless. So it’s not something to worry about. It’s just annoying that you won’t get a true ‘baseline’ after nearly a year on it
I was on HRT for 3 yrs prior to diagnosis, so my bone scores came back great. My onc said I’ve got the pelvis of a 20yr old .. It was nice to get some good news!
Fingers crossed for yours too lovie.
It’s super easy btw. Just don’t wear anything metal. If you read back 
you’ll find our comments on our own scans
Have a lovely day BBB’s
Morning to you too! Just wet and soggy here! No frost so far though snow is forecast later today 
!
Thanks for explaining about the DEXA scans. When I first went for the results of my biopsies, the consultant told me in a very matter of fact monotone voice that “you have breast cancer and it’s called invasive lobular cancer and you’ll start on Letrozole tomorrow “! I was so shocked and stunned that I couldn’t even ask any questions and just went home in a daze. I had never heard of lobular breast cancer and it’s only on reflection that I feel quite miffed that I was left to find out about it myself through this wonderful forum and Dr Google. I wasn’t told about the side-effects of Letrozole but just that I would be starting it the next day and be on it for at least 5 years. Nothing was mentioned about a DEXA scan and it was only by reading some of the posts on this forum that I decided to ask whether I should be having one and now being told that yes I should after 9 months on the AI! I’m not unduly worried about a scan as I play a lot of racquet sports and think I’ve probably got quite strong bones, but I am a bit p…..d off at the complete lack of information from the consultant in the first place. My BCN has since explained a bit more to me but I’d say most of the info about the type of BC, the AIs, side-effects etc, I’ve learned from reading the posts from all the fab BBBs !
Oh blimey! Your consultant sounds like a bit of a dick
Mine, thankfully, was lovely. But he did sort of tell me and then pass me on to my cancer nurse- who is just wonderful!
I had invasive ductal carcinoma. I completely agree about the “matter of fact” diagnosis. All I heard was “you’ve got cancer” and the word “invasive” Tbh I was convinced, in that first moment, that I was going to pop off at any moment 
Thankfully, the first words out of my lovely nurses mouth, when I was passed over to her, were “ don’t panic, it’s very very treatable- and you are highly likely to live a long and happy life” And then she winked at me, which helped no end … but that word “invasive” is just so bloody scary on day one. Of course, all it really means is that it is a tumour and therefore has the ability to spread - at some point- if you don’t remove it. But we don’t know that on day one do we?
Re the meds: I wasn’t told that I was going on to Anastrozole either, there was no conversation beyond “we’ll discuss your adjuvant therapies after your surgery”.
I googled absolutely everything (as we do ) and was expecting to discuss this with my onc before making any decision. First I knew was a prescription in the post. I went ape! - major meltdown -and Called my BCN and ranted! Apparently the surgeon made the decision for me. Well, I made it clear that I was taking nothing until I had had the opportunity to discuss my concerns, and run my stats, with a qualified oncologist! It went down like a lead balloon. But, I stuck to my guns and got my onc appointment through very quickly after that.
I kept her busy for well over an hour! … poor woman was getting twitchy by the time I’d finished dissecting everything. But, it is really our decision, not theirs. They can give you best advice but it’s really up to you. And, As I said to my own onc “your remit is to keep me breast cancer free for the next 5 years. But MY remit is keep me active and functioning for the rest of my life” …
Obviously, it depends on your own situation and stats, but these meds come with serious side effects and there really isn’t enough emphasis on the side effects and your quality of life. Youre just given theses pills, patted on the head, and sent away to get on with it! And sadly there seems to be quite an array of different opinions and attitudes to them too.
So: advocate for yourself. Do your own due diligence. And don’t be railroaded into anything!! AI’s are definitely good at what they do, but they aren’t exactly gentle. Stripping our bodies of estrogen can cause long term damage to our bones, heart, brain (all the things that hrt guards against for our old age). So, you really need to weigh up the risks for your own particular stats. Your oncologist should be able to run your results through predict and explain what advantage letrozole gives you, over & above your surgery & radiotherapy/chemo
If your chance of recurrence is high without the meds, then at least you know exactly why you need them and then you can focus on that and get help with any side effects, to keep you fighting fit.
In my case, AI’s only give me a 1.2-2% advantage over & above the surgery and radiotherapy. So, thankfully, if I struggle, I have the option to step back. But, of course, we all want to give ourselves the best possible chance to stay cancer free don’t we? … its something we have all had to weigh up because we all get side effects. If you’re lucky, they will be minimal. In my case, they weren’t (I’ve been told to come off of it for 8weeks) And unfortunately these effects kick in after we’ve all been through the wringer already with diagnosis and surgery etc. It’s a lot to process.
Which is why places like this are so important. We all get it
Anyway- sorry about the ‘novel’ I hope you were sitting comfortably and that you don’t get too much snow (well, unless you can stay snug and warm indoors and just enjoy it through the window with a cuppa )
Snow down here on Thursday apparently 
Xx
Hi lovely ladies, hopefully you are all doing well and keeping warm as it’s turned cold. Just checking in and I’ve been reading and chuckling to all your stories, thank you for sharing
I’m 2 weeks on from finishing radiotherapy and have had some of the side effects, nothing too major so far I do feel tired, but to be honest I love snuggling under a blanket mid afternoon with a cup of tea so any excuse to lie down I take! It’s definitely not fatigue, maybe this will hit later? I’m taking melatonin gummies and these have helped with sleeping at night. My skin around the top of my breast, clavicle area, is red and itchy, twinges come and go, and my breast area feels sore. Using lots of epaderm cream 2 x day. So overall I’m feeling OK 
Next Onc review on 11 December and I will push for stats as you’ve all suggested. I can see in my notes (nothing discussed but for future consultation….) extending letrozole for 10 years?… and proposing ribociclib…..? Let’s see how that discussion goes …
Wrap up warm and sending big hugs to you all xxx
Hi @miswoof-88, thank you so much for the brilliant account of your own experience! I totally agree with you regarding the word ‘invasive’. When I was first told it was ‘invasive’ cancer, it put the fear of God in me! I still find that word quite scary!
When I read your post, I realise what little contact I’ve had with the medical team throughout the whole journey. I saw the original consultant (the dick !) twice, a different consultant who did the surgery (very nice guy) who I saw once to give me the results of the surgery and an oncologist once for about 10 minutes to tell me about the radiotherapy. I’ve not seen or spoken to anyone since, apart from a phone call with a BCN. I was never told about oncotype testing so I don’t have any figures on the chance of recurrence. It may be too late for that now as I think it would probably have had to be done post-surgery, but I’m not sure about that.
I know that, 7 months after surgery, I should be getting on with life, and I am as much as I can, but the fact of having had breast cancer, still occupies my mind 24/7! I don’t know if this is normal or for how long it takes to constantly stop thinking about it and wondering how or why did I get this. Was it because I was eating the wrong things, or because I’m a bit overweight or because I wasn’t doing enough exercise. In my head I know it was probably just bad luck but it doesn’t stop my mind from turning things over and over. It’s quite exhausting!! Anyway, I’m hopeful that one day I’ll wake up and not think about it as much or at all and that maybe then I’ll get some peace.
Ever hopeful !
Just as the weather has got so much colder, my heating has gone on the blink 
! Just waiting for a heating engineer to hopefully come and fix it! Inside temp 13 degrees! Brrr!
P
Hope you got your heating back on soon! What a day to loose it … get your thermal knickers on
Re your stats: it’s not too late to run them. It’s based on your tumour type/size stage/grade etc, so it’s not time sensitive. When you see your onc, tell them you want your predict score. Talk it through…
You can actually run it yourself if you have the info from your pathology. Your BCN should be able to send you a copy of the pathology report, if not, your oncologist will be able to. If it helps, a lot of us write down our questions before we speak to our white coat boffins. It does help. I take a notepad with me, to take notes
Anyway, Our initial biopsies rarely change but the actual tumour pathology (after surgery ) tells them more info. And that’s what usually determines your treatment path. Either way lovie, it’s good to know this stuff so keep asking- even if they don’t like it It’s dreadful that no one discussed the letrozole with you. I understand your frustration,
Go get your questions answered lovie,
Good luck / stay warm
Xx
Afternoon naps rock!! Grab em while you can
Hopefully you don’t get any underboob action but, if you do get any peeling/soreness, try and get some flamigel RT (Amazon sell it if you can’t get it on prescription)… see above 
It’s helped me too lovie.
Embrace your inner sloth for a bit longer!
You’ve got a bit of peace until your follow up, make the most of it
Xxx
Evening lovely ladies
Hope you have all had a good weekend. It’s been very cold and wet here but it’s been nice to be able to go out and do things without being in pain! Lily’s hockey coach has been really sweet and always saves me a seat on the sidelines with the team under shelter so I could still go to all her games (a lot of the grounds are standing only).
How are you all getting on with Christmas preparation? I love the cold, bright winter days, they are my favorite time of year along with Christmas. However I really don’t feel in the Christmas mood this year and I don’t know why 
I’m still staying with Lily and Iain and trying hard to get into the swing of things for them but finding it difficult, is it just me being odd here?!?
My niece is due her second bubba tomorrow so maybe a new great niece or nephew will kick my arse into gear
How are you itchy ladies doing? Is the Flamigel still helping? I’m hoping to go out soon and buy some new bras, just need to build up the confidence and hoping to be brave like @bellalasagne1 I know I only had a lumpectomy rather than a mastectomy but the 3 scars are still very obvious and boob is a funny shape. As @misswoof-88 said I’m looking forward to having the girls back up a bit where they belong instead of round the waist like a belt
Keep in touch ladies, it’s always good to read your updates.
Sending lots of love
Hey lovely,
No it’s not unusual to feel odd. I’m stilll very up and down as my new diary is starting to show. I find the slightest negative thought or comment can send me downhill in a totally disproportionate way. I still can’t fully reconcile my emotions so keep telling myself I’m overthinking 
but maybe it is part of either the mild trauma or it’s trying to move forwards. Who knows
Good luck with the bra shopping (you know I hate it!) Try loads of different sizes and styles (not wired tho) and be prepared to feel frustrated and a bit teary, although I really hope that’s just my reaction and you’ll buy the first one you try 
Love to all
B xx
Morning lovely ladies!
I love this time of year too. Especially helpful for the hot flushes … my hb hates the long dark nights but I’m ok with shutting out the world and snuggling up with a cocoa and slippers.
I’m up and down too ladies. Some days I’m ok and feeling like I’ve dodged a bullet (stats good-enjoying a med break until the new year) and other days I’m just feeling this sort fear or grief for the last six months of cancer treatment, and the horror show of hematoma/blisters etc… I think maybe I’m still trying to process everything
When people ask me how I’m doing now, I have a habit of saying “it’s dealt with- it’s gone” … but it’s not really is it? I think we are all still trying to live with and reconcile ourselves to the fact that we had it in the first place.
Don’t get me wrong, I’m doing ok. I’m a naturally positive person (most of the time) but it does sometimes overwhelm me still- this notion that “I’ve had cancer”!!! And yes, Charlotte, I keep looking down at my unmatched pair and wishing it wasn’t still so damn obvious!
Just As an aside: has anyone else got a weird dark ring around their nipple? … it’s kind of like the dark skin underneath (that makes it look a bit like you need a good scrub). But, it’s also sort of raised up and a bit puckered?? … god, this is weird stuff isn’t it?…
I’ve definitely now got an unmatched pair. If they were eyeballs; ones got a lazy eye and a deformed forehead!! 
. Hay ho:woman_shrugging: my topless sunbathing days are long gone anyway…no one wants to oggle my “frankenboob” except for freak show purposes. Which, to be honest, is what I do every day I look in the mirror. I inspect the underboob, blather in my flamigel and and have a prod at my freaky nipple and numb armpit
I think I might treat myself to a pair of silk pj’s for Christmas- I think I’ve earned them…
I could do with new bras too ladies. I don’t think I’m brave enough to do changing rooms yet. I think I’ll order some from bravissimo and try on in my own time at home
I’m out tonight to see the stylistics 
… I’ll have to hoik the girls up in a wired one tonight wish me luck 
I intend to have a boogie tonight - I don’t think my M&S leisure bra is going to do it
Hope you have a good day girlies
Hope you had a fab time at the Stylistics concert! Were you boogieing - or should that be boobying - along to the music?
Had a fab time, thank you 
Booby’ing is a very good description! Lol
“Wave your hand in the air, like you just don’t care” …
& keep your left one on your right boob!
Have a good week boob babes