Hi; got a call today re the MDT meeting on Thursday. Surgeon put his case across about stopping due to low predict etc. but oncologist has said take a break for 6 weeks and maybe try exemestane. I think I’m done, don’t want to try anything else so I will either stop completely or try letrozole again. I think my brain and body needs the break just now.
It’s such an awful dilemma I’m just defeated. X
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Hey
I felt the same as you after stopping - I didn’t want to try anything else as I was sure it would be more of the same . My friend stopped Letrozole after about the same length of time that I was on Anastrozole but nearly 3 years later she’s still taking the Exemestane - just for your information really . Most people I know who are fairly happy on the their hormone therapy therapy seem to be on either Tamoxifen ( sadly not an option for either one of us now ) or Exemestane.
Take your break - don’t worry about it while you are having your break and see how you feel .
There’s no defeat here . I hope you begin to feel better and if you do it might be helpful for you and your team if you keep a diary of what improved first . I felt a definite improvement in general overall stiffness after 48 hours but it took months for my knees to get better and even now I’m not sure they are quite the same. Six weeks should be enough to give you some improvement if your symptoms are related to Letrozole . A lot of us struggle mentally after active treatment finishes and I found the Moving Forwards course helpful others have had counseling so if your mind doesn’t improve please get some help but I’m really hoping that you get some benefit from a break and keep talking to us to let us know how you’re getting on.
If at some point in the future you want to restart the option will probably be there. It was hinted to me last year that I could do just that even though I had been off it for 2 years by then.
Unfortunately some Doctors work a lot more holistically than others and especially if they haven’t done the cancer journey themselves they don’t get how awful it feels when you’ve been undergoing treatment to make yourself better putting your life on hold in the meantime to then be given something that’s supposed to keep you well and to be told you have to take it for years only for it to make you feel worse than ever. They’re playing the long game looking 20 years ahead but when you’ve had cancer your perspective changes. I know I struggle to look that far ahead - always have done actually and prefer to feel good today . That’s not that I’m feeling pessimistic - I’m not and hope to be here for a long time yet .Xx
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Oh Joanne… your words made me cry ( happy tears). Thank you so much for the sage advice. I’m going to try the break for 6 weeks and then maybe re-try letrozole.
I don’t want to try exemestane because of cardiac and anxiety side effects ( which I understand may not happen) plus I just don’t want yet more side effects albeit different ones. If I give letrozole another bash after the break then I know I have certainly tried.
I keep thinking about the % benefit of hormone treatment being 0.2% at 5 years and 0.8% at 15 years. So plan B it is, if this doesn’t work then we will cross that bridge when we come to it.
Love to you all 
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Hi @entropy Thank you for these honest posts. I feel exactly like this about AIs (and menopause etc.), alongside all the sexism and ageism (feel all this is part of the same thing). Society should do better but just because we talk about it more I don’t see any tangible changes (at least not where I work)…
I also have a goldendoodle - although he’s definitely more golden than doodle 
and he is totally gorgeous. Am so glad your furbaby is ok
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Hi @minib goldendoodles are so loving aren’t they? Mine is more golden than poodle in temperament I think - at least when it comes to his urges to roll in fox poo 
. He’s got brown birthmarks on his tongue common to goldens.
Given that 50% of the population go through menopause, every health centre should run clinics related to it. Pretty much like diabetic clinics are the norm. It should have its own medial specialism.
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They are adorable the sweetest and most loving. We also have a tibetan terrier who is a fox poo roller…
And yes, I absolutely agree that there should be specialist clinics for menopause and more funding for women’s health.
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I’m sorry that you’re in this dilemma. My own experience was with Anastrazole, which had a profound impact on me, both physically and mentally.
I took a break, and found that my mind started to clear soon after stopping. That then helped me to think things through, and eventually take an informed decision. I couldn’t think clearly whilst taking Anastrazole.
In the end, I discontinued it, with my Oncologist’s blessing. She understood that, at 71, quality of life is more important to me that increasing my survival chances by around 1%. (On the other hand, my BCN initially didn’t want me to give up, but eventually accepted that it was right for me).
I’m not advocating that anyone takes a particular decision; we are all different. I hope that you find a way to move forward.
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BCN did a live on Hormone therapy side effects posted this week on YouTube
This oncologist acknowledged the side effects and that the option to take a break is a good one.
Can’t remember where I read it recently but there was a study that said that taking hormone therapy for 3 months on and 3 months off appeared to have no difference in outcome. That side effects build up over time and the breaks helped to alleviate them. I’m going to speak to my oncologist about this on my next call. (Will have to find the article again and bookmark). I had a 6 week break from Letrozole and some side effect really dismissed. Now nearly 3 months into Exemestane and some of the morning joint aches are getting troublesome. I try to walk it off with the dog but some days I don’t want to get out of bed, even though being still makes me more stiff. It’s all such a balancing act.
Take care all 
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Youve got an oncologist with a 99% life expectancy at 10 years??!! Mine (according to Predict) is 84% and Ive never seen an oncologist! Only surgeon and then annually underlings. Are you an NHS patient?
I’ve never seen an oncologist and yes I’m an nhs patient - there was an oncologist at the MDT meeting and the outcome was fedback to me. Only ever seen a surgeon.
X
Hello @acantilados and @Margarita
Sadly I think your not having an oncologist is more evidence that cancer treatment across the UK is very much a “postcode lottery”. It’s totally wrong in my mind that your level of treatment should depend on where you live.
I live in a relatively low population area so I do get to see an oncologist once every 2 months for a 20 minute appointment. She says she would like in an ideal world to have at least 40 minutes per patient but even in our lower populated area there simply isn’t the time or resources for this to be achievable. She therefore signposts her patients to where to get additional support and help from charities etc as much as possible.
I know the “postcode lottery” issue is something many people have campaigned about and tried to change. I’m sorry that it seems you are affected by it. I just wonder if you could write to PALS at your hospital and raise it with them and ask them to intervene on your behalf so you do get to see an oncologist as you deserve to.
Sending you a hug. Xx
I really struggled for the first six months on Letrozole and then found a brand I could at least tolerate, fast forward three months and that brands not available and for five months I have whatever brand was available. Back came all the side effects and joint pain was off the scale hence I’ve not been here much as most days I simply wasn’t functioning. My predict score was 0.69%. My GP demanded my oncologist see me and last Tuesday the oncologist agreed Letrozole was causing me more problems than help and asked if I’d like to come off it (it has to be your decision), when I said yes she was then free to say “you’ve made the right choice for you”. In just four days the tiredness and fatigue are gone, the joint pain is still a problem but I am expecting that to take a while to ease. I have not thought at all as to if I’ve made the right decision or will I live to regret coming off it. All I have said is a little prayer each day thankful that I haven’t got to put that poison down my throat. Everybody has to do what is right for them but remember you do have that right, it is your decision.
Wishing you all better days annd easy recoveries and looking forward to being here a bit more now that I am living again and not existing. Love to you all xxx
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I hope @nannabee that from now on you will able to do more of the things you love again and that the residual side effects wear off.
Sending you a big hug x
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I don’t think it comes down to poscode, its pretty standard that you only see an oncologist if you have chemotherapy, otherwise you don’t ( I think you mentioned previously that chemo was part of your treatment jayesse?)
I’m guessing that in @acantilados case, as its been 18 months since her treatment, that her surgeon or BCN just took opportunity to ask an oncologists opinion whenthey next met one, which would of been at an MDT regarding other people - a run it by you sort of thing.
Don’t want people to panic that they are getting sub-standard treatment when its the norm.
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That is correct entropy x
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Ah. I see what you are saying. I think you are probably right re only seeing an oncologist if you are having chemo. (I remember my mum saw an oncologist and she didn’t have chemo but that was nearly 30 years ago and maybe the system was different then).
I do know though that different trusts work in different ways and spend their budgets differently so there is a bit of difference in the way they work. Where I am they don’t do regular screening post double mastectomy but in the next big hospital, which is in another county, they do screen for a certain number of years. So in that respect there is a difference but I get your point totally re seeing oncologist and apologise if I have misled anyone.
Big hug to all. Xx
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Hugs back to you! X
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Its very tricky to know who exactly you are seeing, I’ve found, and what their role is. I had a 10 min appointment with an ‘oncologist’, but only to discuss the radiotherapy plan. Then I had a telephone appointment to discuss my risk against stopping tamoxifen due to side-effects. I wanted to know her thoughts on a situation called ‘cross-talk’, where er+ tumours can divert to using her2 receptors to grow, resulting in hormone only treatment being less effective for her2 +ve tumours. My query was met with silence on the matter and then a change of subject, where she said given my low risk, its not unreasonable and any other options (such as zoladex and AI’s) would have their own long term cardiovascular increased risk, so the alternative is nothing in my case.
Made me wonder if radiological oncology is a separate discipline as I would of thought that a medical oncologist would of been aware of the ins and outs of receptor pathways stimulating growth and would at least been able to give me an opinion? If I ever get to meet a medical oncologist, I’d love to sit down and discuss my case as I had a rare receptor profile on a rare cellular tumour type, so there isn’t any data to compare.
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Actually I saw an Oncologist - so did my friend it was before Radiology and signed our consent forms with them. Mine recommended the change from Tamoxifen to Anastrozole a d went through Predict with me. But it was just one appointment and a follow up phone call after which she discharged me. My friend was at a different Hospital and had at least two face to face appointments - possibly three but she was discharged after those.Neither of us had chemo and were both Grade 1 but I think sometimes there’s just one at the MDT so I think things may be done a little differently depending where you live actually.
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I would guess that MDT’s are often done over zoom or equivalent, especially at my hospital, as I know the oncologists are based elsewhere and only come out to visit at certain times. Your friend may have been at a hospital where the oncologist is based, so you get a more personal approach. I know my oncologist said she makes occasional trips out to cover as she’s based at the specialist cancer hospital a fair distance away.
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