Now 78 yrs old, HRT 30+ years-stopped, cold turkey Dec 21, early BC diagnosis Sept 21, following routine elective mammo, G1 12mm and 2mm DCIS no lymph nodes, er7 pr8 HER-. On Letrozole since Dec 21. Miserable SE, 12+ kgs weight gain, BP up, Cholesterol up, pain in knees and hips, VA, numb fingertips, v dry skin, thin hair, no eyebrows, hypothyroid. Using Vagirux twice weekly now.
Today after routine followup mammo and scan, looks good, Predict says 0.9% chance of recurrence in 10 yrs. The Dr I saw today gave me links to two reports/surveys of women of similar age, which states taking Exemestane every other day is possible, with no added risk. Has any one similar experience? Quality of life is now more important to me than recurrence-(was told I would prob. die with it rather than from it! -thanks!)
@tappin I’ve asked for continued bio-identical HRT because at least for me the quality of life is so bad without it. It is an age thing, too - at 78, it’s worth living well while you can. Sorry, don’t mean to be too personal! You could go and see a specialist doctor, like Dr Angela Sharma (London) for advice and prescription. She’s lovely, and super well-informed. I’m no expert, but Tamoxifen is supposed to stop oestrogen binding to receptor positive cancer. Maybe something like that could be used? I don’t know where you live - there’s also Dr. Louise Newson. You can look up her lectures on You Tube. I would certainly ask for vaginal oestrogen at the very minimum. Without it, there are some quite nasty risks (see Mariella Frostrup’s book). Good luck
(Dr. Sharma) https://spicedpearhealth.co.uk/about/
Thanks for the reply. I am on Aromasin, but I don’t want to take Tamoxifen as it can cause retinal changes and I already have a problem with my right eye! I had a video call with Louise Newson, and tbh I didn’t think she was particularly helpful! I do have the Vagirex too, which has helped.
I am 69 and was diagnosed with early bc last year. All along I was told that I’d eventually be taking hormone therapy for 5 to 10 years and that’s the bit I dreaded most - I’ve already had one menopause and don’t want another with extra bells and whistles! I wasn’t convinced by the assurances of men and young women that I ‘might not have any symptoms’ or worse ‘most women learn to tolerate them!’
It wasn’t until I saw my oncologist that he actually asked me how I felt about treatments being offered after surgery! He went through the stats and explained how they assess the risks and benefits of treatment. According to my pathology, age etc, I dropped my risk of recurrence from 20% to 4% by having radiotherapy. So I voted for that.
Hormone therapy took my risk down 2%. It didn’t eradicate it, it just took it down to 2%. And he said, yes you will get symptoms. As I have an active life on the farm, have experienced menopause and have seen a friend’s side effects, I decided that it was a no-brainer for me! As he explained - 98% of women with my risk will be taking it for no benefit! (Same with radiotherapy - 80% women in my category won’t benefit - but the risk of being 1 in 5 is bigger and I’m not chancing that one!)
The oncologist wanted me to understand my risk/benefits and come to my own conclusion about therapies, which he supported after thorough discussion. I was so grateful and relieved!
However, it was a bit unsettling after radiotherapy to be handed a wad of info and a prescription for Letrozole! And the nurse questioned whether I’d spoken to THEIR oncologist! I guessed then that most women must take it - which made me temporarily worry about my decision!! But not everyone does decide to take it - Quality of life is important - for younger women it’s different, but in older age, why be crippled by a drug for almost the rest of your life (when age is also trying it’s best to slow you down) for such a small chance of any benefit?
Please correct me someone, if you think I’m wrong, but a 96% chance of being cancer free, as opposed to a 98% chance of it by taking a drug that makes me feel s…t all the time makes me choose the former.
I’m always aware that there’s a small risk of recurrence, and as my checkup looms, I’m still terrified! But I’ve been getting the most out of a hitherto pain free 70th year.
I may be forced to change my mind by circumstances in the future but I’ll make the most of health in the meantime.
I’ve just re-read your post. With only a 0.9% risk of recurrence at 79 - I wouldn’t take a drug that made me ill! Talk to the oncologist again - or another oncologist who really explains the risks!
I’m 58 and my risk of recurrence was 0.8 % over 5 years up to 1.3% over 15 years and the cancer I had was tubular which rarely spreads so I made the decision to stop Anastrozole after 4 and 1/2 months due mainly to joint pains and stiffness but also hair loss and feeling generally about 10 years older.
I’ve become increasingly worried I’ve made a mistake ( even though my Breast Care team think it was a reasonable decision ) but I also had my check mammogram today and have a bad case of scanxiety . The radiographer who I haven’t seen before and wasn’t very impressed with said that as it is now December she was wishing all her patients a Merry Christmas - a perfectly harmless remark really but my reply was " well I think that will depend on the result of this " . Poor girl - I don’t even think I wished her a Merry Christmas back !
I spoke to one of the BCNs at support group last week and she’s sending me an appointment so we can discuss it properly with all the options.
I know how you feel, your mind keeps pulling you back after you’ve made a decision however sure you think you have been! It’s the nature of the beast, and it’s in our natures too, to re-run things when they’re big like BC. My husband doesn’t do the re-run thing so much - when he’s made a careful decision he seems able to come to terms with it and accept it better than me! (He has heart disease to contend with and has to make decisions about side-effects of various drugs) That is a help to me, because he helps me to do the same!
Look at the maths…less than 1% is such a small risk when you have a 99%+ chance of putting your body through a lot more trouble by lacking oestrogen. Have a look at what oestrogen DOES for your body. Muscle strength in the pelvis area can be particularly affected - American cancer sites seem to acknowledge that continence can sometimes be affected. Muscle pain and lack of sleep can stop you exercising properly - and keeping fit is important in so many ways at our ages. I was told there was about a .05% (is that right?) chance of getting another cancer from radiotherapy, but that was dismissed by the medics as tiny and not worth worrying about when the gain it gave was an 18-20% reduction in risk from BC recurrence!
(Even then my oncologist pointed out that out of 100 women with my risk, 80 will be having un-needed treatment) Still, the risk/benefit there made it easy to make that decision to have radiotherapy.
Look carefully into the maths (think of other percentage risks you take every day) and the nature of your cancer with its low risk of recurrence. Weigh it against your risks to your quality of life with the drug. Your quality of life affects your health too!
I have to be out and about on the farm and don’t want any re-run of menopause or aching joints when I’m chasing sheep!! I’ve taken up swimming since BC and feel even fitter. I was told the drugs can’t completely guarantee that my BC won’t recur - I’d still have a 2% chance. So presently I’m happy with my decision still - with foregoing a only a 2% advantage with Letrozole I have a 4% recurrence chance - and yes, I have niggles now and then, we’re only human!
That’s a wonderful post everything you said is bang on . I’m feeling somewhat better now because my mammogram came back as clear ! I was worried because I had been experiencing more discomfort in my breast than I’ve had for some time - however I’ve put it down to having increased my exercise level . I’ve also restarted open water swimming and I’m now up to 3 Yoga classes a week one of which can be quite strong on the upper body . Now that I’ve been doing it all for a few weeks it’s stopped hurting .
I also did radiotherapy - it seemed worthwhile to me as I had my doubts about the anti - oestrogens anyway . My BCN appointment has come through early than expected , it’s next Tuesday and I’ve got a whole load of questions for her but as she has also supported me with stopping them I think I’ll probably stay off the anti - oestrogens . I just need to follow your husband’s example and not look back.
I’m impressed with your exercise regime! Open water - does that mean outside?? I’m a coward and stay in a local pool - very lucky to be able to use the pool at a local hotel! I’ve heard how good yoga is - I haven’t plucked up courage to join a group yet and am not sure of the different types of yoga. Arm strength and fitness is important for us isn’t it?!
I too have been getting more pains and twinges which according to my nurse over the phone recently are probably all ‘treatment related’. The literature tells you you’ll probably get pain, discomfort and fatigue during and just after radiotherapy which gets better over 3 months or so. Well, I got no side effects whatever having the treatment! No tiredness either. I actually worried that they must have been doing something wrong!!
(I have always had what feels like bruising down my side but I think that is from sentinel node surgery when I had the WLE in January). I had radiotherapy in March - wasn’t till around August/September that I got any pains in my breast. Odd stabs and jabs and places that feel like bruises to the touch. Pain behind my nipple that’s enough to wake me up. I seem to be doing things the wrong way round! I find it’s more comfortable now to sleep in the crop top bra that I bought months ago and never needed to use!
I am now coming up due for my 1st post BC annual mammogram - so I am now trying to suppress the panics that it sounds like you got too??
I forgot to ask you if you got the result of your mammogram straight away or did you have to have an awful wait??
Thanks for the good wishes - you too!
Yeah I think we all get scanxiety as someone else put in a post . The result came quicker than I expected and quicker than last time . I can’t find it just now but it said that the Radiologist had reviewed and cleared it but someone else had typed the letter and sent it unsigned to expedite sending out the result - for which I was grateful.
I’ve been doing Yoga for many years and it’s helped me to stay sane over the last few , and it does help with the aches and stiffness as well . I was doing 3 Yoga classes a week before BC and I kept up with 1 of them pretty much throughout everything but as well as having surgery and radiotherapy I got a rotator cuff injury on the other side and it’s taken me quite a while to build up to restarting the other 2 classes both of which in their different ways are stronger on the upper body. If you wanted to start Yoga you can always go for a beginners class and speak to the tutor - there are adaptations for every posture and you can build up. A lot of classes have students with mixed abilities and experience - it’s always a case of doing what you can do and not thinking about what anyone else is doing. At my recent BC support group they said that there was no need for me to be worried about doing Plank pose or Downward Facing Dog - though my risk would be lower than many as I only had 1 SNB . I do use adaptations as there are some things my body is never going to be able to do!
Living on a farm must be a strong exercise regime in itself - lots of upper body strength needed I imagine.
As for the swimming - yes it’s outdoors I get a real buzz out of it .
I also find that I get discomfort in my breast if I don’t wear at least a crop top to sleep in - odd stabs and jabs is exactly right . I get odd twinges at the top of my arm as well. I try to do a quick set of the breast exercises every day - I do have some tightness down the operated side that is definitely treatment related. My friend who is 10 years post - lumpectomy and SNB still gets intermittent discomfort so I think we are probably stuck with that .
I’m sure your result will be fine and I hope you get the results in good time .
Interesting - I have just listened to Dr Michael Moseley’s radio 4 programme where he extolled the health benefits of exercising in the cold - especially outdoor swimming! (Have you heard his Just One Thing programme?) I guess chasing sheep in the winter might count too!? I hope so ‘cause I’m definitely not jumping in the river!!
What BC support group do you go to? I’m not aware of any round here (we’re on the Welsh border so there’s often a confusion between Welsh/English NHS and what’s accessible where I live) and my nurses aren’t much good at practical help - they never suggested I try wearing a crop top at night when I rang them for advice about it waking me at night. I get the impression they think I’m making a fuss after getting reassurance that what I’m experiencing is ‘normal’! They did eventually send me to a physio, (about the tightness of chest muscles) who was helpful. I can now hang off the monkey bars with my grandchildren!
Sorry to keep asking questions!! Hope you don’t mind.
My NY resolution is to seek out the local yoga class - I keep seeing ladies heading through town with yoga mats - I’ll follow them!
You can hang off the monkey bars ? ! Amazing ! I’m glad the Physio was able to help you .
I’m in Yorkshire - my support group is one that the BCN service organizes and it meets 4 times a year though I’ve only been able to go once. I live in a fairly small town and I was surprised how many people I know have turned up there . I know there’s another one but it’s run via Facebook which I’m not in but if you are you could search in there for groups . It’s usually worth me going - one time we had a good talk from the Lymphoedema Nurse this time there was a Q+A with a BCN and a talk from a MacMillan Nurse about fatigue and benefits.
It’s funny isn’t it - mostly the BCNs have been amazing and the 2 I’ve seen at the support group certainly are but after my failed VAE / whilst waiting for results from my check mammogram they weren’t helpful at all.
I haven’t heard Dr. Michael Mosley’s radio programme - I might see if I can get it on catch up. I watched his TV programmes though - I wish I could bring myself to try his Fast 800 but I enjoy my food too much . I do fast for 13 or 14 hours overnight though which he recommends. I was already cold water swimming by the time I saw him do that but I have started eating fermented foods to support my immune system partly because of him and partly because of Tim Spector’s book Food For Life etc. One of my Yoga classes is outdoor - that feels like a really special thing .
I’m quite sure that catching sheep in Winter will count as well - I’m in awe . Forget cold water swimming that’s definitely hardcore Geeps .
Haha! We don’t actually have to catch them until they’re all brought in the yard - when it’s easier because they’re bunched up together! I get my exercise when getting them out of a field - with a dog who isn’t quite up to one-man-and-his-dog standards! Sometimes I think my husband muddles me and the dog up in the field!
He knows it would be sensible to retire - but have you ever heard of a farmer retiring willingly??
Borderlands can be quite confusing for healthcare. Sometimes we’re sent to England, sometimes Wales. My mammogram was in Wales so I got into the Welsh system which was generally excellent. However, lots of good services in Wales are a long way from us and our nearest hospital is in England! Although our home is in Powys, our address has an English post code so the Welsh hospital where I was treated told me it couldn’t access my records! I’m not the only person living on the border - you’d think someone would have worked out a system!?
Nurses have a hard job, and are generally amazing but there’s one I avoid if I can - when I was the last woman left in the waiting room after a long wait for a late appointment, to get my pathology results after surgery (so I was high-level anxious!), she came out to call me and smiled and said, “Juliet, you look absolutely terrified!” I was speechless - I wanted to say “what d’you expect??” It took me a minute or two to guess that must mean good news but there are better ways to impart it - It made me feel like an idiot for worrying!
I will try yoga outside when I learn some - that sounds the BEST!
Thanks Joanne x
I too had a 2% chance of recurrance with he meds and 4% without, and I changed from Letrozole to Exemestane on recommendation from a surgeon who said she’d suggest it to her Mum If needed-i only take it every other day,-I’ll be 79 in February, and so far so good-no side effects at all-well the only issue is it has sent the rest of my readings off kilter-BP, thyroid, cholesterol so they have all be tweaked, so onwards and upwards. Will report back now and then if anything changes. Good luck all.
Happy New Year! And thanks for asking! I am doing ok, but getting upset tummy now and then, but can’t pinpoint source or reason-could be meds, but am re-reading Dr. Avrum Bluming’s “Oestrogen Matters”, and particularly about oestrogen after breast cancer.
I was thinking a while ago, I took HRT for over 30 years and I got the early breast cancer when I was 76! So to my mind it was just bad luck, not the HRT! There was a trial of using exemestane in menopausal women with early BC just twice a week, so I’m doing more investigation into that too. My skin is just so dry-arms and legs so wrinkly since stopping the hrt ! And the rest of my skin too! I’m taking collagen powder as well as other supplements to help and I keep hydrated as much as I can.
Regarding your recent post “the Welsh hospital where I was treated told me it couldn’t access my records!” is rubbish! I went to Norfolk and had to go to A&E there as I had palpitations (new heart med) and I needed the info when I saw the cardio chap here in Oxford, so I just applied filled in a form and they emailed them to me- you have every right to have your records! Don’t take no for an answer! You apply to patient records direct at the hospital concerned. Will keep you informed. Stay positive-in the best way!
Here’s to a happy and healthy 2024 for you too!
I will soon have the results of my first annual mammogram so I’m keeping my fingers crossed, but so far I haven’t regretted shunning the hormone therapy. I picked up a leaflet for one while I was waiting at the hospital last week and reading all the side effects shocked me all over again! I though…just what do they want us to die of??? Clearly not BC - but anything else won’t seem to bother that particular hospital dept!!
Surely, in our 60/70s cholesterol, blood pressure etc etc are more risky to us than oestrogen?? I may be wrong but I do wonder! And creaky joints come with age - I don’t want to exacerbate that!
I read some stuff from an American cancer society (can’t remember which) that incontinence is also a long term risk - pelvic muscles are affected? Heck!
I shall see the consultant as he’s offered an appointment - I think my pains are treatment related but I do want reassurance - I don’t think that’s asking too much - just in case. I really hope I don’t have to take the b…. drugs!!
I haven’t seen the book - I will look it up.
Good luck!
Oh I forgot…I thought it was weird about my medical records - it was when I was being assessed for surgery. They must deal with people from our border town often, but the nurse thought it was in England - perhaps therefore they hadn’t even applied for them?!! Then she said the others’ system wasn’t compatible to theirs. I suppose it wasn’t essential, for I could tell them my history, but I could have missed something! And some people might not manage. A bit strange…!
I’m not the only person living on the border - you’d think someone would have worked out a system!?