Well I had to take everything off except my knickers and socks. Looked very glamorous as you can imagine!!!
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Oh wow 
I think it’s no metal, so maybe you had zips/buttons? Well done x
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I had to take everything off minus knickers then gown on. Maybe it depends on the type of machine?
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Knickers on for me Sheelagh 
It’s just as well I was told because I think I just expect to have to get my girls out every time now. I might need to remind myself when I go to the dentist!! 
Re radio/itchy boob: I’m a day behind Charlotte and I’ve got a red itchy boob. I’ve got lots of little pin prick scabby spots and some of them come up as blisters with fluid in them. I had my radio review today and they just said to use some 1% hydrocortisone if it was really itchy. It is bearable at present, but it’s definitely spreading and, like Charlotte, it’s underneath too. Although I don’t have anything as bad as her huge blister. Poor love.
I’m getting my energy back now but it does take time…
Hope you are all doing ok lovely ladies
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These itchy blistering boobs sound awful and my sympathy goes out to you and Charlotte. Never imagined it would take this time before reaction kicked off. My daughter laughed so much about me asking you all the knickers on /off question. I told her we weren’t named the BBB’s for nothing. We may need to now add an extra B for blistered . Sending you healing hugs xxxxx
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Good morning ladies
A little self centred update! Blisters are now starting to heal and still getting them cleaned at the hospital but hopefully that won’t need to go on much longer. I’ve been taken off meds until 8th Nov to give my back time to heal. If it’s no better by this Friday then the nurses will speak to the oncologist about a face to face appointment. It would have been 2.5 weeks by then since I first raised concerns with them about my back. Their advice was, and still is, take paracetamol, go for a walk outside each day, have a nice soak in a warm bath and maybe a swim. However advice from radio is no soaks in baths (just quick in and out), no swimming and no bra (meaning no leaving the house or my boobies are bouncing round my waist which does the blistered area no favours!) Obviously completely contradictory advice, gotta love this little journey we are all on 
Feeling a bit better in myself but a bit teary every now and then cos I feel worse now than I ever did with the cancer or the initial op. I hate feeling so useless and having to rely on everyone but they have all been brilliant. At least I can dress myself again now so that’s a big plus!
Hope you are all doing okay and not too many of you are walking around without any knickers on like the bonkers lot you are 
Have a good week my lovelies 
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Hang in there lovely, it’s ok to feel pants (see what I did there…? ), as you WILL get better. Rotten knock back though. Hope you get the Onc appt and get sorted very soon xx
I had my ‘last’ follow up call with BCN today. Long story short, I’m now being referred to the lymphoedema clinic next week because my arm and behind my shoulder is still swollen post double surgery. Apparently they have some magic machine which will diagnose the problem so of course I’ll report back.
Assuming this can be resolved (BTW it’s one of the possible many sources of my sleeplessness) they can also offer me prosthesis and bra fitting as I said bra and clothes shopping is guaranteed to get me upset due to not being able to find anything that 1) fits and 2) doesn’t look like a surgical support device. Even my crop tops are digging in now as they’ve slowly shrunk a little with each wash. So, I’m also knocking around with one hanging out most of the time - wahey!
Love to all, keep going xxx
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Hi lovelies,
Another one from me as, after my BCN follow up call yesterday, I had a call from my Onc.
You may recall I received a letter from them ‘confirming’ my recurrence probabilities and -crucially - benefits from taking lovely Letrozole (2%) which were much lower than what I was told F2F (9%)?
It turns out I think someone mis-translated ‘half’ in production of the letter as 2% 
meaning if I hadn’t questioned the letter, and taken it as the ‘truth’, I might have stopped taking it due to side effects when my risk is much higher!
I was so cross about this o/n I emailed Onc’s Sec and BCNs this morning to highlight this issue, politely pointing out that ‘half’ is 50% and the risk this type of error might present to other patients.
So BBBs, the moral of this story is to keep asking questions! Also, I also firmly remain in the Letrozole club - woo hoo, rock n roll 
Bxx
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Oh Bella, that’s not good that they have made a mistake like that and I’m so glad that you kept pushing for answers. Sorry to hear that you need to remain in the pill popping club but at least you know you’re doing it for a good reason!
I haven’t been told anything figures about reoccurrence just told that it’s in my best interests to have radio and hormone therapy. Given how bad these have been for me personally I think I might have to ask my onc at my December appointment just what the figures are 
Hope you’re keeping okay and they can do something to get your shoulder sorted quickly 
Lots of love
C xx
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Wow well done you! So many would just accept what’s written and not question.
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I agree Charlotte, like you the medics have said to me, it’s in my best interest… I like facts so want to know the benefit and predict scores. I’ve used the breast cancer v3 website and can enter my own data/results but it would be useful to have someone explain it. I am going to bring this up at my next Onc meeting too. I expect to have the debate of 10 years on letrozole vs the current 5 years…. Hope you are healing and blisters are disappearing. Finished #10 today, 5 more ….
Lots of love x
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Oh BBB’s we all looked forward to our treatment being over but it seems our journeys are on going ! I’m now thinking that the surgery was the easiest part. Contradictions and mis information just add insult to injury. It’s so frustrating. I have my last radio tomorrow. Combined with the good old Letrozole is simply wiping me out. Feel like I’m barely functioning. Let’s hope we all have a better next week
Keep going ladies. Sending you all much love xx
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Hello you lovely BBB’s!
Bella, what a shocker!! That’s one hell of a muck up. Thank goodness you pressed your point for a proper explanation.
Sorry about the different outlook though. It looks like letrozole is on the cards for a wee while longer, for you, do I’d definitely be looking at getting all the help you can. I Hope the swanky lymphadema machine works out. I’m intrigued- do share 
Quite agree about our journey still being a bumpy road ladies. I had to come off of anastrozole. I just couldn’t take any more. Cluster headaches/stiff painful joints/ low mood and just hot flush after hot flush… I got so, so tired that I just wasn’t functioning on it.
I’ve also had a stiffness in my affected arm, ever since I’ve been on it. To the extent that one night, after a really bad night sweat, I couldn’t even push the duvet off of me without crying out in pain.
I stopped over last weekend, just to give myself a break and enjoy a couple of fun nights out. After a couple of days off of it, most of the above had either disappeared or reduced, dramatically.
To say that I was reluctant to get back on it, is an understatement! But, I did. That night I woke up crawling the walls in pain all over my head. My bp went sky high and I had to crack my fingers opens to pick up a glass to drink…
I then stopped and I called my onc’s secretary.
I spoke to my onc yesterday afternoon. And she was surprisingly empathetic, which given our first f2f back in August, I was not expecting her to be so amenable to me being off of it.
Having discussed my own particular stats and my worst symptoms, she was very quick to say “we need to anastrozole off the table, permanently “. Her take was that it was causing me an unacceptable level of toxicity. So, she has advised my to take nothing until January. She wanted me to have a good 6-8weeks to get the anastrozole out of my system before trying anything else.
So, here I am. AI free and hoping for the best. It’s a wee bit nerve wracking, but in my case, I got the most advantage from the radiotherapy.
I, of course, completely understand that not all of us have the same stats. And it IS important to know them. I urge you all to look at your own when making these life changing decisions. I half expected to be getting prescriptions for other meds to counteract the Anastrozole, but I’m rather relieved not to have to take it right now.
I’m still getting nightsweats and flushes, still tired and not sleeping very well, but I’m not in pain like I was. That’s a major win, in my book.
Exemestaine has been put on the table for the new year, but I have been advised against tamoxifen because if a history of gynaecological problems, so that’s 2 off the table for me.
Fingers crossed for the new year I guess. I suppose, it does make sense to give my body a chance to deal with the SE of radio etc. which is an ever changing spotty crusty itchy rash and a darker boob, but I’m moisturising like crazy and it does look to be more confined to underneath now 
Onwards and upwards lovely ladies. I wish you all a boob friendly, pain free weekend. Here’s hoping
Hugs all round!
Xxxx
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Wow @misswoof-88 what extreme reactions you’ve had. Are they subsiding a bit now? I’m glad your onc is responding and you have a plan x
Can’t agree more about understanding your stats. I’d also advise taking someone with you to those Onc appts if you can. My hb confirmed what we’d heard before it landed in letter format which confirmed I wasn’t actually going mad!
How’s your skin @lottie73, any better yet?
So has everyone finished radio now? (Sorry I’m losing track) Feels like we should have a party….for ‘party’ read get in PJs early (no bra) with a glass of something nice, tasty snacks and a good book/film etc 
Can’t quite believe the highlight of my week will be getting my arm/shoulder checked out on Thursday. Rock n roll eh? It aches atm, I don’t think being on a laptop all day is helping. I’m taking breaks and stretching regularly but it doesn’t feel right. Ho hum….onwards my lovelies.
Much love
Bxx
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Hi, I’ve got 2 more radio sessions…. Yippee! I’m doing ok, tired and a bit achy with the odd twinge. Roll on Thursday
Then I’m chilling and hoping side effects don’t kick in. I hope you are all doing well and your symptoms are improving.
Next meeting with Onc in mid December and I will push for stats then. Has anyone had the debate of 10 years vs 5 years on AI therapy yet? I’m not having any major side effects currently but really don’t know what to do. Is it then annual mammograms?
Wishing you all the best x
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Morning lovie,
Nearly there! Good luck this week- roll on Thurs ring that bell!
I’ve got blisters under my old girl now… it’s very odd that it takes so long to emerge 
… I’ve blathering on the cream and going commando again. I’m walking around with a cotton cloth under my boob and flapping about like a white flag!!
I think I might stick the tv remote under the left boob to balance me out … lol!
Yes, I had a long chat with the oncologist at my first meeting about the 5yrs v 10years. I was put on anastrozole which has been proven to still provide protection well beyond taking it for five years. So, it was deemed unnecessary to take it longer (in my case). But it really does all come down to your individual stats and how you tolerate it. As you can see above 
I’ve had a bloody awful time on it, and I’ve been taken off my meds until January to “detox”… And, because I got most of the benefits from surgery & radiotherapy, it’s a judgement call as to wether my reduced quality of life is worth the 1.2-2% gain from five years of medication 
…
That said, it’s still a bit nerve wracking being off of everything… but I do feel better. So I’m just focusing on looking after myself and enjoying Christmas with my lovely hubby, family and friends, and we’ll look at it in January. I will probably try exemestane, I think it would be sensible to give myself every opportunity, but if it doesn’t work out, I thankfully have the luxury of being able to step back.
Of course that isn’t the case for everyone. As with Bella. So, I can’t stress enough how important it is that you know your own stats and understand what they mean for you (over 5 & 10 years). Find out what percentage advantage the meds give you. It’s important information. Also, find out what your baseline bone score is if you are on AI’s. If your bone score is low, to begin with, you will potentially need help to keep your bones healthy throughout the 5/10yrs. To support my own bones, I started taking calcium, vit D and working with a PT on strength training (& my PT has breast cancer too. She is living with metastatic cancer and I am totally in awe of her positive energy! She makes it hard for me to whinge 
, which is probably a good thing)
So, ladies, ask those questions and advocate for yourselves. Because When I first met my oncologist, she was very pushy and insistent on my taking AI’s for 10yrs. I pushed back and said why 10yrs on my stats? She eventually admitted that she gives the same advice to every single post menopausal woman …
My point is/was: we are all different. Our stats are all different and we all have our own lives to live as well.
If my stats were different and I was at higher risk of recurrence, I would be taking a shorter med break and getting back onto another AI as soon as possible- along with all the other support I could grab, to make my journey as easy as possible!
But my particular situation is different. Even so, I’m minded to try another med
I guess we all need to do what is right for ourselves. Get your stats!!
Love to all this week. Keep smiling bonkers boobers!!
FYI: I’m feeling much better now- just got a sore underboob still and I’m still knackered 
… I’ve developed a bit of an early evening hot chocolate/cocoa habit…
I’m not ashamed to admit it either!!
I’ve got a cloth under my right girl, tv remote under my left and a hot mug of deliciousness in my creaky old fingers.
Rock n roll 
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@bellalasagne1 I’m doing good lovie, thanks. It was a bit of a horror show for a while, but my body is calming down now, and my BP is improving.
I’m happy to be shelving the meds until after Christmas, but it is still a bit scary going without. I just keep focusing on that modest 1.2/2% gain.
How are you getting on with emotions? I’ve been weeping all over the place! And it’s so NOT me… I’m hoping that will improve too but it’s still early days off of them.
Hope the arm improves for you, very soon. I sympathise, my affected arm is still sore too but I think it’s muscular rather than lymphadema.
I went for acupuncture last Friday (never tried it before) and I have to say it really helped. If anyone is interested- happy to share
Good luck this week hon.
I better move my butt and get my boob creamed
What a life! 
Woo hoo, you’re nearly there, keep going! X
Weirdly I’ve not been offered 10 yrs on Letrozole and I didn’t ask because I didn’t know it was an option. Maybe it’s because I’ve already done 10 years (less for some crimes ) on Tamoxifen, but I read somewhere that Letrozole stays in your system providing benefit for additional years…?
Ask, ask, ask! And write your questions down to take into the appt with you because if you’re anything like me you’ll go completely blank once called through 
Mammograms are then yearly for 5 years. Mine will be around the anniversary of my surgery so June.
DEXA scans in 2027 and 2030. My bone density was fine so I wasn’t prescribed calcium. I have been taking multi vits and calcium for years because of previous history and I don’t eat much dairy (suspect lactose intolerant but never been tested).
Hope your last zaps are uneventful. Prepping my party PJs in anticipation
Bxx
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Hey honey,
Glad to hear you’re improving. I’d imagine your emotions are due to the rollercoaster you’re on, sounds like a particularly nasty twisty one that’s very slowly coming to an end You’ve been through a huge amount, it’s hardly surprising you’re feeling it in every way. Take it easy lovely and look forward to a lovely Christmas 
I’m feeling ok emotionally thank you. My work situation has improved so that may well have been a part of it.
However, 4 months after FIL’s passing, MIL was rushed to hospital on Sunday. She has dementia as well. As of last night she seemed a bit better but even so hsb had to do the mad dash again to visit her and his brother so it was like Groundhog Day from earlier this year.
The inevitable issue over her future care once she’s discharged will follow but we’ve known for months that would happen sometime.
So, so far we’re ok, but I’m preparing myself for worse to come. This time we won’t have the complexity of my treatment happening simultaneously, so it’ll come into that sad category of “its life”.
Thanks for asking 
It’s been really helpful for me to use this forum to talk about these things and the main reason I like to remain anonymous. 
Lots of love
Bxx
Sorry to hear about your MIL. My hubby and I went through something similar, so I completely get it. It’s not easy. And especially tricky when you were facing surgeries etc. Thankfully we were both healthy when we went through something similar. My MIL was diabetic too, which added another dimension to the 2am mad dashes and then trying to stay awake for work.
We lost both my MIL over 10 yrs ago but I still vividly remember how all consuming it was. My FIL passed a few years before. She lost a lot of confidence after he passed. They were together 60yrs! It was hard to watch the deterioration. But you can only do your best. And, yes, it definitely helps to be able to vent on here. It’s like a safety valve! 
Re Letrozole for 10 yrs: yes, you’re quite right. My onc said the same for anastrozole and they’re very similar meds but Letrozole is stronger, I think? But they work the same way.
Not sure about exemestane.
It does worry me about our bones on this stuff for 10 years, so if 5 yrs is just as efficacious, I’d rather stick with that. I would like to enjoy my old age without snapping like a twig at the slightest knock!
My baseline scores from DEXA were very good, which probably a result of my life long love affair with cheese! !
Hope you have a good week lovie
Love & hugs
Xxx
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