I have an intermediate gynaecologist appt on Friday, so I’ll ask again about the hormone therapy and stopping it-I have struggled trying to lose any weight-my BMI is 26, but the extra weight does hamper me, to the extent that formal exercise is hard, but I do run a B&B so am on the go quite a lot with bedmaking and cleaning etc. Talking of compatibility or not in hospitals, in 2021 my sister was here from the States and had been ill before she came, then got sick, was hospitalised in the UK and died-Trying to get her medical records from Tennessee was a nightmare-they only use fax not email and with the time difference we had huge problems! At least our hospitals use email now! I’ll keep you posted as to how I get on!
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A good friend’s daughter moved from Surrey to remote Wales but, just before, one of her horses crushed her hand against a wall and caused huge neurological damage. Getting the medical records from Surrey to her Welsh hospital was interminable due to disparity of systems and really impacted her hand’s partial recovery. It will cost billions to get a modern, integrated system for the whole of the NHS, money that seems to be hard to find. Then we have to be mindful of how that worked out for the Post Office! Might not result in prosecutions but it demonstrates that these complex systems are very hard to get right.
Anyway, Geeps, I am interested in the outcome of your meeting with the oncologist, particularly around your continued preference to decline endocrine treatment. I have given myself a break of two weeks from the dratted stuff as my joints are so bad, not that two weeks will make a difference. I keep doing my Predict score, knowing full well it’s about survival rather than recurrence but the two must be linked surely? The infinitesimal difference that Letrozole makes to my survival, according to Predict, makes my head think “give it up” but then my heart says “you’re playing with fire here”. So do let us know what is said.
So sorry to hear of your problems with the dratted drug. I looked up my records and found that the cancer hospital used the Nottingham Prognostic index in which I came out with a ‘good prognosis group’ verdict. So I understand that it’s been about recurrence rather than just survival…although I sometimes get lost in the semantics. The medical world seem to use language differently to the rest of us! I remember us panicking when my husband’s heart disease was diagnosed as ‘chronic’… they just mean you have it for life - we use the word to mean dire/dreadful/awful!!
I’m seeing the surgeon - who was the one who told me from the start that I’d be taking the therapy - not the nice sympathetic oncologist! I’ll see if he brings them up, but as I’m going to talk about ongoing pains, I won’t be volunteering to talk about the drugs!
Thanks for that, I’d not been aware of the NPI so have just found it online and done my own. I am <3 so am in the ‘Good’ group too. It corroborates what Predict says in that I have a 92% chance of being alive in 5 years and an 81% chance in 10 years. Frankly this is all driving me towards taking my chances although my Allred score of ER+8/8 is giving me pause.
Good luck with the meany old surgeon and probably wise to stay schtum!
Ha! Thank you, yes! I haven’t heard of the Allred score…and I’m thinking now I don’t want to!
If it helps any when I had my Holistic Needs Assessment I mentioned that one thing about stopping the anti - oestrogen that was worrying me was that my tumour was Allred Er 8/8 and PR 7/8 and she said not to get too worried as they were absolutely sure it had been removed / not spread . She said that they would be more worried if it had been a low ER score as then I might not be on the right treatment plan / they might have missed something and that a high ER score just meant that the tumour was behaving as expected .
Today I had a meeting with the Radiologist who performed my failed VAE - I was a bit worried about it and it’s certainly raked up feelings that I thought I’d dealt with BUT it’s also been massively reassuring. Near the start of the procedure she told me that the marker had got lost - my breasts are not dense so when the needle pushed against it it fell away from the tumour . The surgeon told me he had not removed it with the tumour and the other markers and there’s been this worry at the back of my mind but increasing when I thought about not taking the Anastrozole that when it fell it would have taken some of the tumour with it which would be happily growing inside me.
She showed me all films and I could see that as she said , the marker wasn’t really attached to the tumour at all - it was sitting just behind it so there was no way that it could have taken some tumour with it . I was also shown an XRay image of what was removed at surgery which looked complete and not to have any holes in it . I decided to go shopping to celebrate but now I’m home I’m feeling a bit tearful but in a good way 
.
The BCNs set up this meeting for me - I had no idea it was possible and I thought about not going but I’m glad I did now . Apparently mine has been the only procedure that failed 
.
Joanne x
I’m very sorry to hear about your sister - that must have been stressful - added to the sadness.
You’d think that, even though individual medical systems may not work together, a qualified human with telephone and an email could do a pretty good job! It sounds like it worked in your own case anyway! Maybe Wales and England find it harder to communicate full stop. It was certainly the case when we farmed land on both sides of the border - it was an administrative nightmare! The farm was one business/two countries. England blamed Wales for losing info and vice versa!!
Interestingly, I heard on the radio that some people are going back to faxes as they are more secure than emails!?
I’m surprised you were able to take HRT for that long - I was told to stop it after 3 years. But that was a few years ago - maybe a time when they were getting excited about BC risks? I took them again for a few months several years later, but my disruptive symptoms had ceased by then - apart from my having a permanently rather dodgy body ‘thermostat’! (I can’t sleep under a duvet any more - I get far too hot, winter or summer!) But the sudden flushes went. Still, I would have taken HRT for longer if I’d not been discouraged - perhaps my skin would have been better and my hair not gone so thin!
Anyway, you took HRT for 30 years, I took HRT for only 3 to 3 and a half…and we both got BC!
Good luck with the meeting…
How interesting - and reassuring! We do need all this info and reassurance don’t we? It may be everyday stuff for the medics but without having a chance to be shown relevant images and info, our imaginations can go into overdrive!
Thank you for sharing.
A year on, at the mammogram, the old fears reactivated and having to wait a couple of weeks for results in the post seemed hard! However, I have now got an appointment to see the results with the surgeon, and ask about my particular aches and pains and concerns!
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Well, I had a good meeting with the surgeon! Mammogram normal:tada:
so good start. He was sympathetic about the pains I’ve been getting - I can only describe them like bruises that never wear off. He immediately asked how much coffee I drink( 3 cups a day), chocolate (hardly any) and also soya products (some). Somehow they can cause some breast swelling! Not noticeable usually until one breast has radiation. He could immediately feel tell-tale bumps (which I wouldn’t have noticed and still can’t feel with my fingers much) and the upshot is - stop coffee for 4 weeks and the painful ‘bruises’ should be gone! I wish I could remember more of what he said at the time, but I think my brain froze with the thought of giving up my coffees! (This is where it’s good to have someone with you - I only took in half of it!)
He wasn’t keen for me to stop eating soya in my mainly veggie diet - just the coffee!
Explained I’d get a headache as 3 cups a day has quite an effect on your body. Well he’s not wrong there! I’ve had a headache all day today but that won’t last, and I’m amazed and delighted that a problem starting with BC and radiotherapy has such a simple solution!
I have found a Whole Earth coffee alternative which is surprisingly nice!
How are you getting on?
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Excellent news @Geeps. So he turned out to not be such a meany old surgeon after all. I couldn’t give up my morning coffee but it’s rare that I have more than one cup a day anyway. As for chocolate, well, that’s a different story altogether. I am rather partial to it 
. Interesting to know about the impact of these things on a radiated boob. Worth knowing. So I’m very glad that all is well and it was worth the effort to get to see him following the clear mammogram. As for the tablets, or, more to the point, lack of them, I guess that was never mentioned. Thanks for the update.
That’s really interesting about the coffee chocolate and soya . Will file away for future reference . Like @Tigress I’m rather partial to chocolate though I usually have more tea than coffee . I can remember giving up every kind of caffeine caffeine once - I went cold turkey and crashed my moped so take care @Geeps . Are you allowed tea ,?
Xx
D’oh I just noticed you asked how I was getting on. I could tell you a lot but to keep it simple, I reread my histology report last week and noticed the final line was NPI 2.3, which I now, thanks to you, understand. This has given me the courage to have a break from Letrozole as it had begun to affect my mood again, as well as my joints. Not sure I’m brave enough to come off it altogether and, after the last interaction with the oncologist, I’m not keen to engage in that discussion. Also was one of the privileged handful of people who has been told about a very dear relative being treated for TNBC so have been on “support and encouragement “ duty for the past week. Final thought - don’t disappear on us @Geeps now you’re sorted. I’d miss you.
I know crashing your moped is not a laughing matter but I did have a little chuckle at that. As a certain type of person used to say in my youth “oh man, I was totally wired” albeit about substances slightly stronger than caffeine.
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Yes, like Tigress, I had to chuckle about the effects of caffeine withdrawal on your moped skills!
I was told to go cold turkey so that I could then see clearly what was causing my pains. 4 weeks should do it! Then, he said, it’s up to me how I play it. I take it to mean that the pains are not dangerous - I find my own level of tolerance. I feel really stupid how little detail my brain took in from my meeting - ‘Why? How?’ my husband asked me…’Um I’m not entirely sure!’ answers me. I’m kicking myself for not just asking for a recap of the info before I left, but I really think it was down to my astonishment that the solution could be so simple and mundane!! And now I’m even more ‘drug-free’ than even I intended!
The surgeon said no de-caffeinated coffee either because that has some caffeine in, I don’t like tea and while I virtuously said I never buy chocolate biscuits, I forgot how much I enjoy them when my friend offers them!
I’ve still got the headache so far…!
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It’s ok that you had a little chuckle ladies - my moped took the burnt of it . I had to give it up because the back wheel got bent and wouldn’t go round. Nobody else got hurt though I was a bit bruised. It was more embarrassing at the time cos I was made to sit on a chair that someone from a shop had brought out and wait for an ambulance to come and check me over while a crowd of people gathered - mortified . Quite funny in retrospect .
Xx
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Thanks for your kind words Tigress…it’s good to discuss things with people who know what you’re feeling/talking about isn’t it?! I’m so sorry to hear you’re having to support someone with the dreaded TNBC…at least we haven’t had to contend with chemo.
As to AIs, it does concern me how much women are suffering for these drugs. I don’t know what to think. It’s difficult to advise because it’s only up to the individual to decide - when they balance the risks. It’s not only your body but also your relationships they can mess with. Low mood is yet another burden, which is more visible to everyone around you, quite apart from the irritation and frustrations of physically creaky joints! I’m sure I’d be very difficult to live with!!
I suppose you have to look at the myriad risks we deal with every day, to get this recurrence risk into perspective. And then balance the risks associated with side-effects against the risks of recurrence. Some people seem to put up with an awful lot because they won’t contemplate a single risk with BC however small. And yet the drugs don’t eliminate the risk completely. And we take other risks all the time without too much thought. BC has scared us all.
An 80 yr old relative has just completed her 5 years on an AI and said ‘they’re supposed to protect me for the next 10 years - I hope they do!’ I just had to think…what things are more likely to kill us after 80?!?!
Could you go private for a consultation with a different oncologist? I suppose there’s a danger that they stick together professionally? But it might be worth it? I wonder why mine was so happy for me, with my diagnosis, to come to my own decision over a 2% risk whereas yours was so pushy?? This is roughly how it went:
I said I’d already had one menopause and I really was dreading the side-effects of AIs even though the nurses had told me I might not get any, and he said ‘Oh you would get some!’ Then he said ‘I think you might have already answered my next question…’ and he told me about the only 2% benefit they’d give me after radiotherapy. My reaction - ‘It’s a no-brainer then!’ I did check - was I a low risk then? He said yes, and that’s the last that was said on the subject!
Funny that I can remember that meeting almost word for word but I didn’t take much in when I saw the surgeon this week - I do remember thinking as I was lying on the bench ‘I should have worn smarter shoes!?!
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I’ve just taken the dog out and I’ve been thinking😱uninterrupted about all this…my conclusion was…
I’m comfortable with my decision because I reckon my next decade is my last active one and is probably the one where I gradually get to start feeling my age anyway. So I’m determined to enjoy my current mobility and relative fitness without any aches and pains and/or any other negative things that I can possibly avoid, for as long as possible!!! Who knows what’s round the corner anyway - I might not make the end of the decade anyway - my mother didn’t. (I was going to say I could get run over by a bus - but that risk is pretty low as there aren’t any rural buses left round here any more! All the bus stops are now book swaps!) Several friends have been unable to enjoy their looked-forward to retirement because of other horrible things like Parkinson’s and even early dementia. If I’m unlucky and get a BC recurrence I shall blame the 2% risk that I’d have had anyway - there’d be no knowing after all - and I’ll hopefully appreciate, and not regret, having been fit enough to enjoy getting through at least some of my bucket list without being put off by aches and pains. (Won’t stop the annual mammogram anxiety of course!)
The dog, of course, agrees with me entirely…
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I agree with everything your dog says. I gave up work to care for two people, one was quick (7months), the other was my mother who declined slowly over years with dementia, like her mother before her and her older sister. Have to consider I might be heading that way too. The dementia changed me as a person, far more than the cancer diagnosis did. I don’t have children and most of my family and friends are older than me. I dread losing myself as a person and having no-one to make decisions for me so I’d be quite happy to make it to 80ish and then pop off. I currently regularly visit a dear family friend who is 100 and in a care home. I look around me there and think why? Why on earth does everyone want to live as long as possible? Old age is demeaning and depressing for most and often painful. At 68 I’d like another 15 years but that seems quite a long time in which one could get a recurrence, particularly a metastatic recurrence so that’s why I’ve continued with the vile drugs. But, as I think about the conundrum of whether to continue with them on a daily basis, I should really make a decision one way or another as it’s getting quite boring in my head now. I do have co-morbidities as they are unpleasantly called, but nothing at the moment which restrict me too much so might well take my chances.
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I understand how you feel - especially when you’re helping another BC sufferer.
Your peace of mind might outweigh side-effects eventually? They say side-effects can improve over time? (Trouble is, waiting months is a LONG time isn’t it!) Have they suggested changing drugs - or even brands? Even drug brands seem different.
When I asked my BC nurse at the review, what percentage of patients take the hormone therapy she said she thought about 80%. Whether that includes some who try it and then drop it, I don’t know. She said if I’d had a larger tumor (I had 8mm) and/OR any lymph node involvement at all, they have been keener for me to take it. But she didn’t try to persuade me at all.
Keep in touch - feel free to vent frustrations, it’s what we’re all here for I think!
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I could have written this myself. Although my mum is in an excellent care home the other residents are mainly having “end of life” care as they put it.
My mother had a one way trip from the hospital as the geriatric lead there said her dementia is too far gone now for her to receive further hospital care.
I feel a burden already even though I am running myself ragged looking after all and sundry. My husband is having a mental breakdown due to having prostate enlargement surgery in early February and being frightened I am going to leave him.
My brother has been diagnosed with dementia and is being visited by people he doesn’t know who want to take over his life. He hoards stuff and doesn’t keep himself or the house clean and he drinks to extremes.
I have responsibility for mum’s finances and had to sell her house last year. It took nearly 11 months. I still have lots of stuff here that I need to sell or give to charity.
When will anyone help me? Except the support I get here? Gosh that sounds so selfish but why is it I am not allowed to be selfish when so many others in politics and public life are, and seem intent on bullying and in some cases killing anyone who gets in their way?
Sometimes I think cancer is the most positive thing in my life.
Seagulls
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