BBBs

[misswoof-88]

Hi lovie,

Well, that’s crap! God! It feels like our diagnosis was just the start of a very long winding road. I know all about AFib, my lovely hubby has a history of it (3 cardio versions and 2 ablations - 1 on each side). Thankfully the ablations did the trick and he’s not on any of the delightful meds any more.

I’m so sorry it flipped again for you. It could be your lack of estrogen that contributed. Or just the strain on your body generally. But the main culprit would be your thyroid. Have you had your thyroid levels checked recently?

I’d suggest getting it done because that’s what caused my heart palpitations. Reading up on mine, it’s often a cause of AFib or can make it flip again if you have a history. It might be worth asking for a blood test?

The endocrinologist queried medically induced thyroiditis with me (which could only be the AI’s) but I haven’t gotten to actually do all the tests as of yet. I’m on the anti thyroid medication already because my heart was struggling and I was concerned about long term problems- especially if I’m sitting on a wait list for a year! Fingers crossed it does the trick. It’s early days but my muscles seem more cooperative

I remember Digoxin! That’s serious stuff. It took Phil a little while to get used to it. I hope you settle things soon. Phil had his ablations at St Thomas’s a few years ago and an about 3 yrs apart. And, fingers crossed, nothing since. But, like yourself, we worry when something major happens that it might flip again and we start from scratch As you have a history of it, can you push to go straight to ablation? It would save you being stuck on meds for a long time. I wish you luck lovie.

I think all of us are beginning to realise that the BC lark is bigger than we all thought. Wether or not the little boob critters triggered this things is open to debate, but I think the trauma of facing cancer has long ranging implications for even the toughest of us.

But, on the positive side, we are on on the other side now. Everything we know about ourselves, in this new phase of our life is helping us to stay well. Our journeys might be slightly different but the aim is the same. We all want to be able to enjoy our lives and feel better.

Here’s hoping we get there soon! But I gotta say - “nothing surprises me these days” …

I’m on propranolol to calm my heart down to stop it flipping into AFib. So far, so good. But my last ecg showed abnormalities. Lets hope the carbimozole (anti thyroid) does its thing

I used to hate taking pills. I thought it was a weakness (ah, the folly of youth!)These days I just shout “throw em in the drawer! More the merrier!… sure, I’ll take whatever you’ve got!”

lol!! We’re all rattling aren’t we? But, if we can tolerate the things, and they keep us going… bring it on

Good luck lovie. I hope you get to see the right people soon

Have a lovely weekend lovely ladies

Lots of love.

[misswoof-88]

Doing better Bella, thanks. Hope you are getting on better with your “pills on toast” breakfast thing lol

Knitting is a great brain calmer! Good luck with it.

I too have joined the magnesium trend. My acupuncturist was singing the praises of it too. I’m also doing the vit D3

Every little helps

Sending hugs

[bellalasagne1]

Hey lovelies, it’s quiet on here isn’t it? I hope you’re all ok, SEs settling and hacking your way through January. It’s nearly over and the daffs will be up soon

Just a little update from me, saw my surgeon today for my decision on Letrozole. I’m going to keep on taking it. SEs have subsided enough for me to make it sensible to carry on, for now at least until something else crops up!

So next stop should be annual boob-o-gram. I asked if being wonky, dented etc would cause a false positive (hence alert) but she said no, the radiographers are very adept at distinguishing between scar tissue and critters. Also if I ring the BCNs about a week after they should be able to give me results over the phone which is good

So, onwards!

Loads of love, and a quick tag to @smak to help her find us again!

Bxx

[pmeg14]

@bellalasagne1 - it’s interesting that you’ve decided to continue on the Letrozole, despite having had some previous side-effects. I’ve managed fine on it for the last few months with minimal SEs. However, today I decided to check my blood pressure and was alarmed to see how high it was! It was last checked in October when I gave a week of readings to my GP who was satisfied and told me just to continue on my current BP medication. Today it was so much higher despite me taking it about 6 times in a row to try and bring it down but to no avail ! I’m pretty sure the Letrozole is the reason and I think I’ll have to have a discussion with my doctor as to whether I should keep on taking it or if it would be okay to stop. I’m going to take readings for the rest of this week and pass them to my GP but I did get quite a shock when I saw how high they were today, imagining I was going to have a stroke or heart attack there and then! Just something else to worry about ! Sorry to waffle on but I know that some other BBBs have had the same issue with raised BP.

Hope everyone is keeping well and, like me, will be glad to see the back of depressing January! I saw a few snowdrops in my garden today which lifted my spirits! Roll on Spring!

P xx

[bellalasagne1]

That is exactly what happened to me but 2 months later I’m on the new BP med, BP is back down and minimal SEs for both hence why I’m sticking with it.

I concluded stress caused my BP hike, not Letrozole, so maybe think about coming off it for a month to see (after discussion with your doc of course).

Bxx

[pmeg14]

Thanks Bella. Glad your BP has come down and that you’re tolerating your meds well. I haven’t suffered any undue stress lately so I’m pretty sure the Letrozole is to blame. However, I definitely won’t stop it without speaking to my doctor first.

Pam xx

[smak]

Hi everyone I’m here !!! So frustrating not being able to get on that I gave up in the end. Then voila had an e mail that B had posted and here I am. Brief update…I’m fine. The terrible fatigue after Radiotherapy has eased off and I’m proud to say I can get through most days without falling asleep. Other than joint pain (especially in my hip) I am tolerating the Letrozole well. I am forever checking my boobs. Is anyone else like this ? The scar tissue doesn’t help as it’s hard which is how my initial lump felt. Still better to be safe than sorry. I was due to have the joints in my fingers replaced last Thursday. Arrived at Hosp at 11 and at 3;30 they told me I couldn’t have it because I hadn’t had a CPE swab taken . After apologising they said they would do the swab there and then and I would be sent a new date. In the nurse comes with swab in hand and tells me I have to stick up where the sun don’t shine. My reply was “how far would you like me to stick it up’. !!! All in all life is good. I am going to read through all your messages to see how you are all doing. I’ve missed my BBB’s. Sending love to each and every one of you xxxxxx

[misswoof-88]

Hi lovie,

Still here! . I’m doing ok but now struggling with thyroid problems

Your BP sounds a bit like mine too. It was the anastrozole that affected mine. It was fine, fine, fine then suddenly woh!! Blimey… light headed too, dots infront of my eyes…

A couple of weeks off of anastrozole and it was back within normal range. I’ve got a telephone consult with my onc in the 29th to discuss what I do next. I’ll be honest, I’m undecided. I flip between “never again” and “what if…?”…. I just don’t know.

I’ve just been diagnosed with Graves’ disease (it’s an autoimmune thyroid disorder), so I’m still getting used to the those new meds .

I’m starting to feel better but it’s early days. Not sure I want to add more to an already struggling body. I’ll talk to her and see where we are…

There’s no reason why you can’t have a med brake for a month and see how you get on?? Most of us have and it will help you to know for sure if it’s the letrozole (its the obvious culprit but may not be)

Good look lovie. Get hold of your onc!

Lovely to see @smak hello girlie

[misswoof-88]

Hay Sheelagh! Good to hear from you again, we missed you! Did you get the stick out yet? can’t have been easy with your dodgy fingers!

Sorry to hear about your debacle at the hospital. That would boil my p….

Hope you get a new date soon xx

[amafoss65]

Hi BBB’s, hope you are all feeling well and improving. I’ve just caught up on your news, you’ve all got so much going on… what’s the saying… ‘no peace for the wicked!’ We must be a wild bunch of wicked women, only kidding

Since finishing my radiotherapy in November and as part of my follow up, I was invited onto a psychology program as part of the cancer treatment. I think at the time when I’d completed the assessment of how I was feeling back in August, red flags sent alarm bells as I was so low and really struggling, to be honest, that has continued until I finished radiotherapy and the main or only emotion I have been able to display has been anger about my breast cancer. Maybe some of you can relate to this, I am angry about ‘why me’ which I think everyone feels, but I also got angry about some of the bc journey and how I (again personal) was treated (surgery, RT and poor communication) and how it made me feel. Having the psychotherapy sessions has started to help and hopefully I can move some part of the anger into a positive. If I can change one thing to make it better for future women on this bc journey, then that’s a result

Re my atrial fibrillation, I’m on the good/ heavy heart medication again and it’s helping. Best news is I’m booked in for a cardio version (heart reboot) mid March, so that’s not long! And hopefully it will work and I’ll be back on track… and can start planning some travels with my lovely hubby!

I’ll be honest, I’m dreading the first mammogram anniversary…. Sure you all feel the same xxx

Roll on Spring, any sunshine would be good so I can get outside in the garden. Enjoy yourselves, good luck with the medications and thank you to you all for being such a huge support xxx

[misswoof-88]

Morning lovely ladies!

Just read your post @amafoss65 and it definitely resonates. I think I’ve been pretty angry too. Around the time of my surgeries (in the thick of it all), I had the mother of all melt downs with my sister, who behaved horribly to me, quite honestly (I was accused of lying about my diagnosis to get attention). We’ve always had a difficult relationship tbh. But, I really did expect her to at least pretend to give a shit … nah. Nothing…. I also lost another close friend of many years who just stopped all contact from the moment I told her I had cancer. That hurt like hell too. All those things, combined with just trying to function through this cancer merry go round that we all found ourselves on, I think I just got really angry too. I wasn’t shouting and balling at everyone but I was aware that I could really blow at any damn minute, any damn day. Add in the sleep deprivation and doing the AI dance and I’m surprised non of us ended up being arrested for GBH on a parking attendant or gp receptionist … (“thah she blows!” …)

Blimey…

I signed up for the online “moving forward” course… not sure about it, but I’ll give it a go. It’s two days- how bad can it be. Slightly disgruntled that we already have “homework” … I’m supposed to choose something to do a show & tell?? Humph… no idea … All I can come up with is the rather large early Victorian chaise longue that I restored (down to bare frame) while waiting for biopsy results… kept my brain occupied. But it’s a bit big to take into class!! … back to the drawing board

Anyone else do the same course??

Update on the onc: long conversation on 29th and she has signed me back off to my surgeon now. I can’t go back on to AI’s until I get the thyroid balanced… she said it’s just too much for my system to handle. “Much better to do one thing at a time and the thyroid is higher priority.”

Long story short: I’ve now got until my surgeon follow up in Aug to get my thyroid sorted and feel better before I even think about going back on AI’s. (Which for me is a choice between Exemestane/letrozole). Can’t take tamoxifen because of past gynaecology history and anastrozole has been deemed “toxic”??? So, not sure where to go with that….

I think on it… I may feel so much healthier by Aug (& I am improving now that I am on the thyroid meds- slowly) that I feel up to giving it another try. Who knows.

I am,of course, acutely aware that HAD my own stats been different, I would be having a very different conversation with her. That said, I am very grateful for the opportunity to bend her ear. She listened and didn’t interrupt with “but I still think you should …”. She actually said I made a compelling case and had obviously given it plenty of thought weighing up both sides, sensibly. (Thank you Dr Glendenning)…

So, here we all are ladies. Almost a year later with our follow up anagrams looming large. I don’t know about any of you but it’s starting to bite a bit. I’m not looking forward to even putting my poor old girl in the vice, let alone wait for the results I’m still pretty tender. Ouch!

What a world eh?? Still, at least we all still have our sense of humour! lol! (Just as bloody well, I hear you all shout ha ha ha)

Have a good weekend boob babes

Love to you all

Ali xx

[misswoof-88]

MAMograms - not anagrams!! lol… bloody menopausal fingers! Ha ha ha…

That would be a strange appointment wouldn’t it : “morning professor, I’ve got to wedge my right boob in your ANAGRAM machine” … wtf??

Dear me… hello Mrs maloprop …

[pmeg14]

Hi Ali

I nearly fell off my seat from laughing at your forthcoming ‘anagram’ appointment !! Oh how I’d love my appointment to be solving anagrams instead of boob squashing! My first mammogram since surgery is due in about 6 to 8 weeks and I’m already feeling extremely nervous about it but I’ll tell myself it’s just for an anagram appt and have have a wee laugh every time I think about it!

Incidentally, I also signed up for one of the Moving Forward courses but chickened out after the thought of having to speak in front of 15 or so people was a bit terrifying! I’ll be interested to hear you get on if you go.

As for Letrozole, or whichever AI you were on, did you find having a break from it helped with any of the side-effects you were having, and how long were you off it for? I’m having a problem with raised BP and would like to have a short break from it to see if it reverts back to an acceptable level. Obviously I would need a medic to approve it so yesterday I phoned to make an appt with my GP and was told the first available one would be in 4 weeks’ time! I’m now thinking I might try and speak to my BCN on Monday but she’s often not available and I get put on to one of the other nurses who I don’t know and who doesn’t know me so it’s not very satisfactory!

Anyway, sorry to rant on. I think I’m just feeling a bit p..d off today with it being yet again so gloomy and wet outside! Just need a bit of sunshine to raise my spirits (but maybe a glass of wine will do instead )! I’m going to watch the Scotland v Italy rugby match this aft and will be cheering Scotland on !!

Wishing all BBBs a good weekend. xxx

[misswoof-88]

Happy wet Saturday! Happy to oblige & I’m glad it made you laugh. We could all do with a bit more of it…

Re the course, I’m still not sure about it… even online, we are expected to talk about ourselves… I’ll see how I feel nearer the time.

I was on anastrozole, which is not quite as strong as letrozole but works the same way. I should add that my recurrence risk is low (with or without AI’s) and 5 yrs on AI’s only gives me a 1% advantage over & above the surgery & radiotherapy. In my case the radiotherapy gave me the greatest protection.

I’ve never had high blood pressure, even during the bad days of my perimenopause before HRT. But, three months on anastrozole, and my BP shot through the roof! I also ended up with tendinitis in my affected side arm ( which, as you can imagine really didn’t help). I had spots infront of my eyes, dizzy spells, lethargy but couldn’t sleep. It was pretty horrible.

But on top of all that, my migraines came back (as before HRT). 2/3 days at a time and with very little break between.

my oncologist listened to what my symptoms were and said that I needed to stop immediately. She deemed that an “unacceptable level of toxicity”. Her advice was stay off of it for at least a month.

So, I stopped that day. After a week my migraines disappeared and my joint pain improved. Within two weeks my BP was normal again and it’s stayed there.

I was sent a prescription for exemestane to try in the new year. But between Christmas and new year I found out that my thyroid was overactive. So, I’ve been dealing with that. I never got the prescription filled.

Because I felt unwell with the thyroid, I just concentrated on that. So, when I spoke to her again last week, she was reluctant to ok my going back onto anything else until I get my thyroid back in check.

Some of the symptoms I had on anastrozole may very well have been related to my thyroid flipping out- but- the blood pressure AND the pain/migraines was definitely because if the anastrozole.

The good news is that the thyroid meds are not causing horrible side effects for me (& they can). I am starting to feel better. It’s a slow process though after the breast cancer.

So, here I am. I am not taking any AI’s and won’t be until I feel well enough. But, in my case, IF I decide to not take any endocrin suppression (AI’s) then it’s a calculated risk that is lower for me than it is for others.

As I said to my onc “if my stats were not so low, we would be having a very different conversation” . I’m lucky that I have an open minded oncologist and my cancer was (what she termed) “a piddling little thing” lol!

I appreciate that it’s not the same for all of us…my heart goes out to those of us whose risk is higher.

It is a risk for me to not take AI’s for five years. It may come back… but I worry about my husband too. He’s been through cancer treatment twice in the last 10 years. He had only just finished his treatment last year when I was diagnosed. I sat on my lump until he was over his radiotherapy. So, it was a real slap in the face to get the news that it was now me with cancer.

So, when I was so unwell on the AI’s… the thought I would be struggling on this stuff for FIVE years, with him worrying about me and watching me struggle- every day… in pain. Well, I’m not sure I want to do that to him.

If I get cancer again, I’ll deal with it. It’ll be a mastectomy next time… but having gone through the lumpectomy from hell… I’m not so scared anymore.

It’s important to feel well and be able to function. My life with my husband has been tough this last few years with our individual health struggles. I’m not sure I want to put him through five years of torture watching me struggle on these things when they give ME such little advantage.

That’s why it’s so important to know your recurrence risk. Our boffins want to keep us cancer free for however long we are on these things. But WE want to protect ourselves for the rest of our lives.

I have so much heart disease, osteoporosis and dementia in my family, that I have to look at a bigger picture. It’s a risk though..,

Thank fully I don’t have to make a decision until u see my surgeon again in the summer.

Hope that helps… sorry it’s a long winded one

Enjoy the rugby

Xxx

[pmeg14]

Thanks so much for your comprehensive reply. What a tough time you’ve had and I’m sorry you’re having problems with your thyroid, though it sounds as if the medication you’re on for it is helping. I can see why you would have wanted to stop the AI meds having suffered badly with migraines, and elevated BP etc.

I think I’m like you in that my risk of recurrence is small (lumpectomy, snb, 5 clear nodes and radiotherapy) but I haven’t been able to find out a percentage risk. I applied for my pathology report a few weeks ago but it’s been quite a palaver to get hold of and I’m still waiting! Hopefully, if and when I get it, I may have a better idea and can then have a discussion as to whether I can stop or have a break from the Letrozole.

It’s good that you had such a positive conversation with your oncologist. To my knowledge, I don’t have an oncologist or, if I do, I don’t know who he or she is! It would be helpful to have someone like that to have a discussion with regarding the AIs rather than my GP. I am concerned about my elevated blood pressure and worsening arthritis in my knees, so I’m hoping that I get the green light to have a break from the Letrozole, especially as your BP settled back to normal on stopping your AI medication.

I’m sorry that your hubby has had some serious health issues too and I can understand why you would want to maintain a good quality of life for both your sakes.

Onwards and upwards ! xx

[misswoof-88]

Who did you ask for your pathology results? It shouldn’t be a massive issue, they are your results after all- you are entitled to have a copy. Have you spoken to your breast cancer nurses about it? I got mine from my breast surgeon. The cancer nurses should be able to get you a copy that way.

Your comment about not knowing who your oncologist is, is sadly not unusual. It really does depend on where you live. I’m down in the south east (near Canterbury) and was seen by an oncologist to organise radiotherapy. She then took over my care but has now passed me back to the surgeon for ongoing follow ups. You will have an oncologist as part of your MDT (multidisciplinary team). When you are first diagnosed, your case gets passed to the team and they discuss your treatment plan. It’s the oncologist that decides how much radiotherapy you need.

You sound very much like me. I had invasive ductal both estogen & progesterone responsive. No node involvement. Lumpectomy and SNB last July followed by further surgery in Aug to fix a leaking blood vessel (I ended up with a quite spectacular hematoma) and to clean re close my wound. (BC nurses were amazing throughout). They were able to liaise with surgeon etc and get me seen quickly. GP, on the other hand, was often just a battle to even get an appointment. My BCN told me to forget the gp and go straight to them. I just call the macmillan switchboard and they message my nurse- book me a call back the same day. But it seems there are lots of different experiences, good & bad, and it’s down to your services in your area.

I’d keep badgering to get your pathology. They can email it to you! The breast cancer nurses have access to your surgeon and so can get that to you…

You can run your results through predict yourself. I did. But my oncologist ran it for me too, when I had my radiotherapy prep appointment. It wasn’t offered, I have to say, I asked for it! But you can find the predict platform on Google or MacMillan site. It may even be on here??

Knowledge is power!!

Were I you, I’d forget asking your gp (they will always be reluctant to make decisions on your meds without further advice). So, I would contact your BCN’s and tell them you are struggling on letrozole and your BP is sky high. They will then be best placed to get you to the right people (oncologist etc- your MDT). You will then get the help you need… don’t suffer alone lovie. This journey is tough enough without dealing with reluctant GPs.

Do you have a number (MacMillan) for your nurses? They usually give you a MacMillan business card with a contact number in your “welcome to cancer pack” once you’re diagnosed.

What I can tell you from my oncologist is that it is very normal for us to take month long breaks. The risk is low, regardless, and sometimes it’s necessary to be able to pinpoint it being the culprit. Especially with bp.

She told me she has a patient, with similar pathology to me, who took a year off in order to get pregnant! Then she went back on after the delivery completed the five years, in two halves, a year apart. So, it’s doable. Get hold of your nurses- get your pathology results and tell them about your BP…

They will be best placed able to advise you far better than your GP it’s quicker!

Hope you have a better time ahead. I sympathise with everything you’ve said. I think we all do. I’m very careful to quantify my own reasons on here, I don’t want to come across as some anti vax/conspiracy theorist loony toon. I’m anything but!

We all have cancer but it’s individual to us. Different drafts/stages/stats- different types. For ME it’s an option to step back. For others it is less clear cut. But we all want to get on with our lives and enjoy a healthy old age. How we get there is our own path. I wish you well with yours fellow boob babe!

Xx

[pmeg14]

@miswoof-88

I initially asked my breast care nurse for my pathology report and she said that, due to the Data Protection malarkey, I’d have to fill out a form which she would send to me. This came about 2 weeks later and I filled it out as best I could (there were supposed to be some accompanying notes relating to certain questions, but they were missing!) and sent it back. Another couple of weeks went by then I got a phone call saying the request had to be submitted via the NHS online portal! Most of the online questions were the same as on the original form that I’d sent until I got to a section which asked for two forms of identification to be uploaded ! I’m not the most technically minded but I did eventually manage to take photos and upload them. It did say it could take up to 30 days to receive the report and that was about 3 weeks ago so hopefully I’ll get it soon.

Thanks very much for your helpful advice re taking a break from the Letrozole and it’s reassuring to read the story of the pregnant lady who stopped for a year and continued with it thereafter. I’m going to try and get hold of my BCN in the next day or two (easier said than done sometimes!) and try and sort things out with her. Strangely enough I’ve been taking a note of my BP readings morning and evening over the past couple of weeks and they’ve been consistently high…..and then this morning’s reading was as normal as it’s ever been! However, back to high again tonight!

Don’t you just get tired always having to chase things up? Not just to do with breast cancer. I’ve been trying to get a joiner for weeks now and nobody even bothers to get back to me when I leave a message! Grrr ! I’m becoming such a grumpy old woman these days ! Anyway, that’s my moaning over for the night!

Have a good week.

Pam xx

[misswoof-88]

I’m curious to know how data protection law comes into play when it’s YOUR data that you are accessing?

You are legally entitled to this information and they seem to be deliberately making this difficult for you. Do you know the name of your surgeon? I would go direct to your surgeon’s secretary and ask for him/her to get it sent via email or just tell you over the phone. If you look back through your appointment letters, it will tell you who they are and hopefully a number direct to their office/secretary. Hit the phone and get bolshy!

Waiting 30 days for your own pathology results seems overly obstructive to me. This is current treatment info that your nurses are best places to get you access to. My oncologist gave me my copy, I don’t see why they can’t contact yours and put you in touch with them. They know who that person is

I find that difficult to understand frankly… I would be very annoyed. I am annoyed on your behalf. They are acting as if you are not entitled to this information- your are. And they are legally obligated to get it to you. Making you wait a statutory 30 days is petty and unhelpful, in my opinion.

I hipe you get hold of it very soon. You need that to run your own stats through predict.

I wish you luck.. keep on at them until you get it

I have to say though, if I were you, I would be trying to get hold of either my surgeon or my oncologist (call you breast nurse and find out who that is), to ask them for the info. I certainly wouldn’t be filling in stupid forms and waiting 30 days. Sod that!

Xxx