BBBs

[bellalasagne1]

Hey all,

Yes my areola (isn’t that a bus company?) has a bruised tinge to it and I put that down to exactly that, ongoing bruising. Someone said at some point somewhere that we bruise inside out..?

My surgeon examined me 2 weeks ago and didn’t say anything, but there again I didn’t point it out.

I’m 2 weeks into no Letrozole and am feeling better plus BP is down to where it was. I’ve 2 more weeks to decide whether to try again or not. Surgeon made a very good point, she said my risk of stroke could be higher than my risk of a 3rd BC recurrence. Hmmm, lots to think about as my major stresses have also reduced (thank goodness!) so it could’ve been either or stress/lovely Letrozole causing BP hike. I suppose the only way to find out is to give it another go

I hope everyone’s doing ok and looking forward to some festivities? I’m sure it’ll be bittersweet for some but an opportunity to reflect and rest a bit hopefully.

Love to all

Bxx

[misswoof-88]

Hello lovie!

Glad to hear I’m not alone in the “brown ringed” dept. It’s very strange looking, that’s for sure …

It’s so good to hear that your BP is back down again. My shot up as well, but I’m back to normal now too.

I do wonder, in the wee small hours, if the breast units just put everyone on meds- regardless of recurrence risk- simply because there are just sooo many of us being diagnosed? I guess it’s financially sensible for the nhs to put us all on cheap meds, rather than have a small percentage needing further hospital treatment But, for us, our motivation is to both stay cancer free and live a long and HEALTHY life too.

Your surgeon’s comment about your stroke risk certainly resonates. Regardless of what caused your high BP, it’s going to be important for you to mitigate your risk going forward. I don’t know if you’ve had high bp before BC but I know mine came back down when I came off of anastrozole… it has stayed down and I’ve had some stressful stuff going on since- it’s still stable

My onc has suggested trying exemestane (being as it’s the only one left on the table for me, it’s not surprising- I’ve got a prescription here already ) But , I don’t need to decide until the new year.

. I’m still not sure tbh. I’m very wary because I felt so rough before, that I’m not sure I can face going through it again. My recurrence risk is so low and I really worry about my long term health on these. Mostly because I have so much heart trouble in my family (both sides) that I’m paranoid about looking after my own. My late mother had her first heart attack in her 30’s. So the increased risk of blood clots etc is to be taken seriously given my genetics! I’m still mulling it over and I’m not going to rush into anything.

As my onc said I “have the luxury of being able to step away” because of my good stats… Sadly, that isn’t the same for all of us, and I feel deeply for those of us that have to make harder choices to stay cancer free. But we all share the same desire to fight this shit and get on with our lives as best we can.

I wish you all well bonkers boob babes!

Love & hugs to you all

Xxx

[smak]

An anyone see my messages ?

[misswoof-88]

Sheelagh! Where you been?

We’ve missed you! How are you lovie?

[bellalasagne1]

Hey lovely, I’m on the train to work and just listened to this podcast (hopefully link will work ). Apart from this guy having the sexiest voice I found it helpful for my current thinking

Learn About Breast Cancer Recurrence Risk It’s the first podcast of the 2, about 15 mins long.

I’m also finding logging my sleep and mood daily is enlightening alongside any significant events that may be causes as I’m seeing a pattern emerge that isn’t necessarily related to BC but more to do with my weekly routine

Onwards eh. Hb is putting up Christmas decs while I’m out at work today. It’s also our wedding anniversary so a nice evening to look forward to

Love to all, and hey @smak , hope you’re doing well lovely x

Bxx

[bellalasagne1]

Yes! I’ve seen your msg on Anyone so will reply on there x

[lottie73]

Good morning ladies

I’ve got an oncologist appt today to follow up on how it’s going with Letrozole which is easy to answer

I’m gonna ask about risks again to see if I can get some sort of percentage figure as I’ve never been told those and hope that they give me them. I think that will help make the decision about whether to try going back on the Letrozole.

Hope you all have a lovely day

[misswoof-88]

Good luck. I’m just sitting in K&C waiting to be seen… obviously a busy week for us all

Xxxx

[misswoof-88]

Sounds interesting. Thanks lovie. I’ll give that a go later on. Good tip re keeping track

Hope you a have a stress free day today xxx

Love to all xxxx

[misswoof-88]

That was an interesting podcast Bella, thanks. The oncotype test info was very informative. It just proves how crucial it is that we all know as much as possible about our own pathology and risks. Knowledge is power

Absolutely right about the voice … made me want to ‘slip into something a little more comfortable’ lol! He sounds like melted chocolate (the hard stuff!) lol!

Hope Charlotte had a productive appointment today with her onc

Love to all

[lottie73]

Good morning ladies. Hope everything was okay yesterday @misswoof-88

I had a lovely chat with the onc who explained about NHS Predict and how it worked. She showed us a graph and explained what each line meant and whilst they are always hopeful for no reoccurrence, the hormone therapy can be instrumental in increasing the chances of the bugger staying away. If I had just had the lump that I found myself then she would have understood me stopping the Letrozole and she wouldn’t have been happy but she would have gone with it. However as the 2nd lump was an invasive mixed carcinoma which was fast growing she would rather me persevere as that’s the one they want to stop coming back. The second lump was deep and well hidden and only showed up on the mri which I obviously only had due to my little friend that we could feel. She said that they would give me regular appts in person or by phone every few months for the first year to talk about how the tablets were going if that made me feel any better about taking them. I really felt that she was being honest with us and wasn’t just insisting that I take them cos that’s just how it is do I agreed that I would give them another go. My notes now say in capital letters NO AMAROX MUST BE CIPLA so let’s see how they works! I have a box of Accord here unopened from last month that I didn’t take so I’m just weighing up whether to try the brand to see what the SEs are and if they’re any better than the original Cipla as I understand from some online research that can be hard to find

Blood test and X-ray results next Thursday and bone scan on the 5th Jan (Lily’s birthday!) so hopefully that should be hospitals done for a while

Anyway back to work today so fingers crossed they’ve got the heating sorted at the office or ill be back home pretty quickly

Have a good day lovely ladies

[misswoof-88]

Morning lovie,

It sounds like you finally got the answers that you needed, so that’s good. You needed that to understand your own situation, and to make an informed decision on your ongoing treatment. It definitely sounds like you have a need for AI’s. But actually knowing exactly why you need them really helps.

Ok, so it’s not what you wanted, but you can now get your head around it and crack on Your onc sounds good and I’m sure they will now step up and help you to deal with the SE (as they should). I wish you luck lovie. I was thinking of you yesterday.

My appointment was not so productive. It wasn’t BC related. I have psoriasis (it’s in my family). Obviously, given the last 6 months, it’s in the move and pretty bad. I saw the dermatologist yesterday to talk about systemic treatment rather than topical.

Seems the BC is a problem with the med I think would be best. So, it’s back to the drawing board until she can get advice. I’m supposed to go back after Christmas but she said that they are so behind with appointments, that it could be March/April before I get another appointment though . I’m seriously considering getting a private appointment, which I shouldn’t have of course, but at least it would get me sorted quicker. And then I can tick another one off the list!

I’m still battling with my sore shoulder/arm. It’s been a nightmare trying to get a referral. I contacted PALS yesterday, so we will see what comes of that.

Hope they put the heating on for you

Lots of love xxx

[lottie73]

Hi Ali, hope you’re feeling a bit better now and get some answers quickly @misswoof-88

I put something on another forum regarding the brands and a lovely lady replied saying that the ingredients in Amarox and Accord were EXACTLY the same so I decided not to take the Accord just in case. I am now waiting for a new prescription to be filled.

@bellalasagne1 Im fullof cold and feeling really crappy at the mo so not in Christmas mood in any way. However I did summon up the courage to keep my appointment at our local M&S yesterday for a bra fitting and the lady was lovely. She fully understood when I said how I was feeling and said that she thought she could help. She disappeared and came back with a plain bra which I would never normally have chosen as I always wore underwired ones. However the bra fitted perfectly, held the girls nicely in place and gave me back my waist in the mirror! The scarring from the radio was showing quite a bit and she just said keep going cos it’s a hell of a ride but I’ve stayed on it and that’s an amazing accomplishment. I walked out of those changing rooms with my head held high and tears in my eyes. I can’t recommend Chrissy enough, she was amazing. Even Lily cried and said “that’s the first time I’ve seen you properly smile in months mum”. God I must have been a misery

On another happy note, I have a lovely new great niece born on 24th Nov. Maggie has called her Mabel Violet and she looks like a little door. Gotta get myself fit and shot if this cold so I can go and give her squishes

Sending lots of love to all you BBBs

[misswoof-88]

Hiya lovie

Sorry you are full of cold. Phil is as well, I’m hoping i dodge it, but I suppose IF I do get it now, I should get shut of it before Christmas. I hope you feel better soon there’s so much of it circulating… did you get your flu/covid jab? (We are all entitled to the Covid boosters because of the radiotherapy- & we are also entitled to a spring booster too; my pharmacist looked it up for me )

Your bra lady sounds lovely, it makes such a difference. It sounds like you might be wearing the same bras as me

They are plain but they do a great job without rubbing. I’m living in them right now. I spent loads of money on post surgery bras before surgery but, compared to these ones, they are soo uncomfortable and too tricky to get in & out of. I love these M&S ones.

Re my arm: I spoke to BCN today and she is not at all happy that my GP isn’t referring me or taking it seriously because its on my effected side. So, she is going to speak to my surgeon and get him on the case! I think my GP will be getting an angry phonecall … I’d like to be a fly on the wall for that one lol!

In the meantime I am stretching gently, as much as I can, and popping pills to take the edge off. I’m coping but it’s a worry with the risk of lymphadema. Fingers crossed for 15th

Re Amarox - that’s interesting . Yes, I’d definitely give them both a swerve. You don’t want the same tailbone pain back again … my first prescription was Key Pharma and, of the 3, I found that more tolerable than the other 2.

I’m still mulling over exemestane but I’m leaving it until after Xmas. I’ve got my onc follow up early Jan so ill decide then.

congratulations on the new bundle of joy! What a lovely Christmas arrival for you all. I hope you get rid of your bug soon and can get some serious cuddles in very soon… especially with your girls comfortably up where they belong!

Lots of love xxxx

[amafoss65]

Hi lovely ladies! How are you all doing? I’ve just been catching up with all your news and hopefully you are keeping well and staying safe.

I had my follow up oncology appointment today. It went well and was reassuring. Doc says I’m doing well and have had limited side effects from the radiotherapy, so that’s just good to hear. I have to go back in 6 months time for another check up. I won’t need to take Ribociclib (this was being muted previously) now as the benefit is too low. I am being offered bisphosphonates to help with bone treatment and preventing breast cancer recurrence (3% benefit) along with remaining on letrozole for 5 years (6% benefit). She did go through my predict scores once I prompted her…. and it’s just good to be able to discuss this with a specialist and understand them better whatever the future holds. I am definitely feeling more positive with moving on and hope 2026 brings lots of good times for us all! I might even buy a new bra to celebrate (been told no underwire for another 6 months… pff!) and some nice cosy pjs!

Now I’m going to hang up the decs, get the baubles out and fill my glass. I will raise a toast to you all and hope you all have a fantastic festive time with family and friends. Thanks for being such an enormous support throughout the last 6 months, I just want to hug you all for making me smile and providing a daily chuckle. Lots of love, Amanda x

[lottie73]

Hello my lovely ladies

Hope you are all doing well and not too swamped with Christmas stuff.

I’m on the scrounge again for your expertise and opinions! I have now been diagnosed with low vitamin D and very high cholesterol and been given tablets and statins for them. I am really unsure about taking the statins because of the SE but the doctor said I have a huge chance of heart attack or stroke which has scared the living daylights out of me. I tried to say that Letrozole raises cholesterol but he refused to listen and told me to just take the statins without giving any advice or info on side effects and stuff. I wondered if any of you had any experience of statins and what I can expect. The BCN didnt seem too concerned and said the risk wasn’t as high as the doctor was saying so I’m really torn. Any advice would be gratefully received!

At my last onc appt a couple of weeks ago I was told to do some more exercise including weight lifting and get fitter due to the Letrozole SE but doc said exercise and diet wasnt enough Still not back on Letrozole yet cos everyone arguing about brands and who can prescribe what. This journey is just the gift that keeps on giving!

On a more positive note the bras are fitting well and are comfortable so I’m feeling a lot more girly and might even go to my Christmas party ….

Love to all

[misswoof-88]

I join you Amanda in raising a toast to us all for a healthy 2026

Good to hear your progress. It helps to know where you stand with your treatments, that’s for sure.

I now officially have arthritis in my affected shoulder . I’m now awaiting referral to an orthopaedic surgeon.

On the plus side, the acupuncture (or as I call it “stick & twist” is weird but helpful I’m booked in for physio and got a mountain of tramadol … rather hoping I can manage with ibuprofen but, it’s there if it gets bad … scary stuff!

Anyway, after my little tantrum last week, it’s all go now

Gp thinks I’ve had the arthritis a while but the lack of estrogen & two surgeries is exacerbating it.

Also-just for info BBB’s : I started getting a rapid heart beat a week ago. Never had it before but it can also be a side effect of estrogen depletion. I had an ecg and all ok but just got this pounding heart.

Gp said I can have a low dose beta blocker which will also help with night sweats (in the absence of hrt).

Just thought I’d post it on here incase any other lovely ladies are getting something similar.

Love to all

[misswoof-88]

Hay lovie,

Phil is on statins but he’s on it because it’s a family thing… how high was your cholesterol?

He’s been on Lipitor for years and has no side effects on it. But over the years, he has had other statins that gave him muscle cramps etc (usually when they try to put him on something cheaper!) Like yourself, it is on his notes to only have Lipitor. So, it’s going to be another brand merry go round if you have SE.

Yes, letrozole (all AI’s) can up your cholesterol. But unless it’s sky high I would have thought putting you straight on statins was a bit over the top. Can you ask to just be monitored for another few months?…

If you really need them, I guess you have to You don’t want any clots in your arteries in the next 5 yrs. but I would have thought, once you come off the AI, you could probably come off of it and see what happens??

Thankfully mine didn’t go up, but my BP did. It’s stabilised again now that I’m off anastrozole. I still need to make a decision on exemestane but given my arthritis diagnosis, I’m not sure now… I’ll talk it over with my onc in Jan

Re the Vit D- we all are! I’m taking Vit D3 every day. It’s one of those strange coincidences that most of us boob babes are lacking it. You can’t really get it from food- it’s sunshine that you need. But, in the absence of sunshine through the winter, a supplement is sensible.

I read somewhere that it’s a sensible thing for everyone living in the northern hemisphere during winter. Vit D3 is particularly helpful for us BBBs while we are still healing from our zaps.

I think we are all rattling with pills & supplements

The exercise thing: it’s weight bearing exercises that are needed for bone density. I do weights with my PT once a week. Nothing massive (I’m not bulking up for bikini competitions or anything lol!) just small weights and resistance bands. It’ll keep you safe on these things. The oncs go on about bisphosphonates as being the magic bullet, but they don’t keep you flexible and strong. Yes, They bulk up your bones, but they come with their own set of SE too. So, if you can just do a bit of weight bearing exercises each week, you’ll help yourself without, hopefully,the need for further pills. Anything that will get through your letrozole years in tact, is worth it. My legs are in the best shape they’ve been since my 30’s, since I started my weekly PT sessions.

Lots of love xxx

[lottie73]

Hi Ali

It’s 7.3 whatever that means!

Me and Lils are joining a gym and I’m planning on going swimming a couple of times per week to start with whilst she goes to the actual gym. I’m so out of shape that I’m struggling to even lift a full wine glass at the mo

I feel like things are really hard going at the mo and the op and radiotherapy was a complete breeze!!

Charlotte xx

[bellalasagne1]

Hi lovelies,

Flip, it’s all happening isn’t it! I’m so sorry you’re still battling the merry-go-round of SEs but thank goodness we have each other to bounce thoughts off xx

Saw my surgeon today for follow up 1 month after coming off Letrozole to see if it reduced my BP. The quick answer is it came down a bit, I’ve a pre-booked appt with the BP clinic to discuss additional meds, but I am going to try lovely Letrozole again. The real reason isn’t actually to reduce another BC risk, but to give myself maximum protection and reduce the stress also for my hubby.

Long story short I ended up in A&E again yesterday, this time with TGA (I know the cause) which scared him so much. I need to do this for him.

Surgeon will see me again in 2 months to see how I’m getting on, and I’ll continue to monitor my sleep, mood and BP to see how I go and whether I stay on it longer term or not.

So that’s me. I hope, whatever your lead up to Christmas involves, you stay healthy and enjoy it xx

Bxx