Stopping Anastrozole

[tappin]

I think the most salient point is we are all individual, and each medication for anything can have side effects for one which others never experience. I do think age is a particular factor which has to be considered-the age at which the cancer is detected, the size and stage, as well as statistics.

It does seem to me that the younger the person the more virulent the cancer.  Older women who have gone through meno have less oestrogen in their bodies to start with, so maybe the side effects are experienced sooner or more aggressively than someone with more oestrogen to start with! It's all a learning curve for everyone-including the specialists and they see and consult surveys made by many countries. 

I'm not saying we should all necessarily kowtow to the powers that be, but our stage of life, lifestyle, general health etc all need to be taken into consideration alongside the benefits or otherwise on someones quality of life at the end of the day. Good luck to all, onwards and upwards!!  

[Susanmanchester]

I had joint pain for quite a while but it eased in time . To be clear I haven’t got off Scot free . Have neuropathy get tired and I would struggle if I wasn’t single BUT . My sister stopped taking the meds and died  of secondary breast cancer . More recently I begged a younger woman I know to taker her Tamoxifen meds and she wouldn’t listen . She’s now Stage 4 . I read a lot of posts on here suggesting AIs are optional . For most of us they really are not . They took survival rates over five years from about 50 per cent to 90 per cent . 

[mimimom]

Thanks Susan. I’m 77 & meds just really hard on me. Exercised my whole life but coming off a total hip replacement etc. I’m taking the good advice of watching my weight which isn’t bad but I need to lose a few. I really wish I could tolerate meds better but new info doc next week & well see

[Dolly dreams]

I have come off Anastrazole for 6 weeks after speaking to the BCN

i had DCIS with two tiny bits of invasion, two WLE and start radiotherapy next week. 
my cancer was oestrogen positive. I have huge mental issues about hormones. I have never wanted to mess with them so was devastated to know I need Anastrazole. 
pin the 6 weeks I was on it I felt dreadful. Headache for 6 weeks straight, some days so severe I couldn’t do anything, hut flushes like they were constant all night, little sleep and so depressed. And they were not the bits that worried me … risks of osteoporosis, raised bp, potential links to dementia, heart and liver. 

they suggested a 6 week break and I already feel so much better. I will review in 6 weeks. I like the idea someone suggested of a pill every other day but I like the idea of not taking it even more. My oncologist said it lowers my risk from 5% to 2.5% which seems little for the potential issues. 

[Tigress]

Hi @Ginny338 please don’t censor yourself, you should be able to say what you want on this forum (obviously within the probity guidelines).  There will always be opposing views and it’s for each contributor or reader to decide for themselves how they respond based on their personal experience.  No doubt, if the new guidelines that you mentioned come in, discussions can be had on a case-by-case basis as happens now with all treatment decisions.  I don’t think you were promoting people to give up their AIs as, for most, they will continue to give protection without issue.  Nor is it for anyone who tolerates them well to tell people who have life-changing SE to keep taking them.  Anyway, the new guideline that you were told about by your oncologist is not here yet and we should probably park the discussion until it is.  Just my opinion. 

You maybe interested to hear this interview with Prof Michael Baum, a very decorated breast cancer surgeon, who, along with Prof Avrum Bluming, gives an interesting perspective on what we are all going through.  I have said from the outset that I am more concerned about dementia than BC and he has a view on that too - once again, my own personal viewpoint born of experience.

https://youtu.be/7n5hXe8fJ8g

[Ginny338]

Hi Jean,

No I don’t take a collagen supplement but have been taking Haliborange AB&C since I can’t remember. I’ve just started reading Oestrogen Matters and it is very interesting. I’m always a bit worried about posting stuff here as I don’t want to upset anyone and I’m not advocating anyone does the same as me, I’m just sharing info. I’m 68 this year, weight 7 stone 8 pounds which I think is about 49 kilos. I do my little exercise routine every day and live in a house on a hill so we’ve got two sets of stairs! I hope your next appointment brings good news x

[Susanmanchester]

I have just had my four year check up and been told quite unequivocally by my team that the AIs are absolutely essential to stop recurrence . And I will be taking them for at least another six . There is no protocol U’ve ever heard of which says  not necessary for hormone positive BC and I am under the care of one of the best cancer hospitals in the world . They aren’t an extra and  most of us tolerate them well . But you must also exercise watch your diet because being overweight is a major risk factor and take care of general well-being. . Sorry but you should persevere. I’m 65 BTW so definitely older 

[Hantsgirl]

This is really interesting. 
What is meant by the older patient?

Is it just post menopause? Or in your 60s?

I would love to carry on my life without AIs if possible. 

[Jean the Joker]

Hi there Ginny, 

I'm really glad to hear that news! So I've been taking it for 18 months now ( actually a bit more) and I'll have density test in June. But I don't know if you read the book 'Oestrogen Matters'? - this Dr Bluming has come to that conclusion too.  That in our case ( post menopause, early detection, Oestrogen positive), the AIs may not be of benefit to us, in fact, can make our lives pretty miserable. Good that you take Vit D daily , me too as there is some research out there suggesting very low levels can lead to some cancers. I take a raft of supplements, mainly for thyroid - but the mix I take has a lot of minerals too, and many Vit Bs..very important. It might be worth your while taking more B vits? Do you take any collagen supplement for bone elasticity? I have appt with oncologist hopefully after June and then will ask again if I could now come off the AIs. Anyway, good luck with your journey! 

Best wishes, Jean 

[Ginny338]

Hi Tigress - 'Fraid I'm in the South West region, but hopefully the research that it's based on will be shared across the NHS.

[Tigress]

Hi @Ginny338 May I ask in which region you are?  Fingers, eyes and hot buns all crossed that you say London 😉

[mimimom]

Thank you all for reply’s. This bone and muscle pain has really hit me hard & I even stopped it all 6 weeks ago. Hoping I can get bank to where I was prior to starting. I do have an appointment with a new oncologist shortly for a new perspective on things. She is ordering all new lab work & I will have her check my Vitamin levels. I have been taking  d3 2000 units for quite some time along with Carlson’s fish oil & a B 12 daily. Hope all stays well with you all. 

[Ginny338]

I’m going to start by saying again that we’re all different but - I’ve just had an appointment with my oncologist (she has been really good throughout my experience, very professional and open minded) and she says that within the next 12 months the guidance to clinicians in my region for women like me (older, past menopause, early detection, ER positive) will change and they will stop recommending taking estrogen blockers. I could get angry as these pills have given me joint and movement problems that really worry me but there’s no point. My bones are fine (bone density test results good) and no shortage of vitamin D - I take the supplements and spend a lot of time outdoors. I hope the daily exercise, lymph stroking, weights etc etc etc get me back to something like I was before. 

[Braindoc]

I have to comment on the bone pain after starting estrogen-blocking medications.  I found that I was severely deficient in Vitamin D, causing this pain. Going on Vitamin D3 supplements gradually stopped my bone pain, over about 3 months, and was not an issue with my oncologist.  Make sure you take Vitamin D3, if you need supplements, as D2 did not work for me.  God bless you!

[waveylocks]

That group of drugs all have the same effect ...longterm you end up with zero estrogen in your body. That is the point of them. The idea being that any cancer cell triggered can't latch onto the estrogen. The trouble is they have serious other consequences if taken long termly which until recently was dismissed as being in our heads. They've now realised otherwise. It's all a question of balance.... And having a hot patch surely just goes against the point of taking Anastrole & the like. I chose to stop....took a few months but feel much better now. I dont have hrt. My onc would not allow it. 

[waveylocks]

My Oncologist wouldn't agree. He said the Fish I was off the scale as my estrogen was so high. On the other hand recent research shows that long term blocking of estrogen like Anastrole, examastane does have serious effects for a significant proportion of people. There is now link to high function skills being affected, turning to presenting with altzeimers symptoms....its not currently known if it leads to Altzeimers but there is concern. Our bodies were design to have some estrogen no matter our age. To render out bodies with no estrogenat all for a long period of time therefore is a bit crazy & bound to lead to consequences. 

[tappin]

I am waiting for an appointment with the Oxford team, as I was going to try Tamoxifen, but having read the data sheet, I have changed my mind! The side effects are weight gain-I have put on weight with the Letrozole and cannot shift it trying several diets,  but the main one for me is that it could affect the retina of the eye-I already have this BRVO (branch retail vein occlusion)- and I don't want to run the risk of losing the sight in my right eye! It is a step too far for me as it is a possible serious side effect although my eye Dr says from his point of view it 'should be ok'. So now I am not sure what to do-I am still reading the Oestrogen Matters book, and am leaning towards quality of life over length-I'm now 78, and will be having a bone scan next week because of the pains I've been getting and just dreading the thought it might have spread to the bone tissue!.

The oncologists are all difficult to understand especially wearing masks, so I don't feel I want to sit and listen to the same old, same old dogma!  

[mimimom]

Thank you all for the input  I am 77 and recently completed 30 Radiation, lumpectomy etc. After 3 months on Anastrozole & briefly Tamoxofen, I totally stopped all of it as I could not even pick up a dish, cell phone etc.  Had to take a leave from my work but can't do simple tasks!!  Hoping that it would get out of my system quickly & I could regroup. It has gotten worse weeks later. I have a new Oncologist appt this week and an appt with a rheumatoid specialist. It has gotten that bad. Anyone with experience with stopping this drug & how long until the bone/wrist/ knee/joint pain went away  if ever ( my biggest fear) would be really appreciated. I think the carpel tunnel wrist pain is worst. Chronic pain!! I am very active and had none of this arthritis prior to taking this med even giving my age. It has now affected every aspect of my life. I am not complaining as I know I have it much better than most but just craving info. No other real side effects.  Thanks so much, 

[Susanmanchester]

I think that’s wise . Maybe I am lucky but I have no significant side effects on Letrozole after coming up to four years with another six to go . To stop is to play Russian roulette because as you say early stage breast cancer is just stage 4 waiting to happen . If I end up taking it the rest of my life then so be it . I watched my sister die of SBC in 1999 after she refused chemo and stopped taking Tamoxifen . It really isn’t worth the risk . As for ‘quality of life ‘ I think that is a very dangerous argument. There is much you can do to maximise that with healthy diet staying active AND taking meds 

[Tigress]

This is what Avrum Bluming has been saying for a long time.  I wasn’t offered HRT whilst I was going through the menopause as, I think, it was at a time when it was, wrongly it seems, considered to be a cancer-promoter.  I wish I had been at least offered it but it’s too late for me now at 67.  Except I was given Vagirux, a topical HRT, for vaginal atrophy and changed from Letrozole to Tamoxifen so that I could use it.  I have since been warned off Tamoxifen by another specialist I see due to family history of stroke and dementia (as an aside -  I guess the oncologist doesn’t know about my family history but I think she should have at least asked.  Or is it our job to research SE and say “I probably can’t take that for these reasons”? 🤔).  I think the report you attached has made my mind up, to go back on to an AI and just use Hyalofemme for the VA as topical HRT can have a negative impact on recurrence.  

And as for this early stage classification, the thing that I keep thinking about is, yes I was Stage 1, Grade 1 with no LVI or lymph involvement (lucky me!) BUT there was an IDC and a DCIS in close proximity so it wasn’t a one-off.  What if I hadn’t gone to that screening? What if those two baddies had just been left to grow?  Surely it’s just a matter of luck and timing that makes me “early stage”.  Surely early stage is just late stage waiting to happen?  Does Grade 1 stay Grade 1 or morph into  2 or 3?  I have no idea but not worth the risk.  So, yes, it’s back to the AI I go.

Thanks for posting. 

[Ginny338]

This is a very interesting read for anyone on an AI who had early stage, ER positive with no lymph node spread: https://www.breastcancer.org/research-news/hrt-doesnt-seem-to-raise-risk-of-breast-cancer-recurrence...

[Ginny338]

Hi Tappin, like you I am strongly considering going back on HRT (maybe as a patch or the gel). I did not have any of these joint problems whilst on HRT. Did you get any responses?

NB when I asked my oncologist why I was put on Anastrozole she said that they are told to use Anastrozole or Letrozole first, then Exemestane last - because the former are a lot cheaper. She would not prescribe Tamoxifen as I have a strong family history of heart attacks and strokes.

[Sweetpolly]

Hello to everyone who has been on this journey. I have been on all the estrogen inhibitors and tamoxifen. My journey began with stage 2, and no lymph nodes involved. I had 4 weeks of radiation, followed by  2 year’s of on  and off estrogen inhibitors. The side effects were on bearable! Yes mine lasted for about two years. I was 57 at the time and very active . My onco score was a 5 percent of reoccurrence. I was then put on tamoxifen, oh boy here we go again. The side effects never let up and I only did that drug for my granddaughter who would be born the following year. 2 years on tamoxifen I have decided to take myself off. Everyone must decide for themselves. My quality of life is more important to me now. As I am an active grandmother and caregiver 3 days a week. I did have genetic testing I hope everyone gets to do this. I do not have any cancers that are genetic. That along with talking to my husband and family helped me to come to this decision. 3 1/2 years on medication  that made me feel like I was old, bone pain, sweats, nausea, bad headaches, depression,  stomach pain, and many more. I am 61 and I  will have a mammogram soon. I pray am 5 years clean. Again everyone must decide what is best for you and only you can make that decision. Talk with your oncologist, read and research all the information on the drugs, trails, and the new studies about these drugs. I am send everyone on here hugs prayer’s! 

[Susanmanchester]

Hi you should have had a bone scan I also took ibandronic acid for three years and last scan was normal density check with your team 

[Jean the Joker]

Thanks Susan, 

I appreciate your reply and I'm so sorry that you have to be on them for so long. But I understand that each case is unique. I had a different prognosis- 95% chance of survival in 5 years and 97% with the AIs. As you say, a few aches and pains don't matter- I already have those with arthritis , arthrosis and several herniated discs. But I'm going to be 76 this year and am otherwise fit and active with a good diet. What I'm most concerned about are my mood swings, depression, anxiety and memory loss. I agree that the adverse effects lessen after time - well, the aching joints, muscles, etc but in the last two years I have had no check for bone density, heart function or cholesterol which I understand can all be affected by the AIs. I am also concerned that some of these might be irreversible. I think I really need to talk again with my oncologist. Many many thanks for your post and I wish you all the best with your treatment.

Jean x 

[Jean the Joker]

Thank you Tigress. You are , of course, right- it's up to me and only I can decide. I wrote to a specialist in Barcelona and he kindly replied and his view is that the AI is mandatory - but in 'Ostrogen Matters' the author maintains that although some tumours are  have Oestrogen receptors, it is not those particular  receptors which multiply and cause greater risk. Perhaps I've misunderstood this but he makes a compelling case, pointing out that  if oestrogen is the cause of most female cancers, then as most post-menopausal women have very little oestrogen, we could expect the number of breast cancer cases to be lower among this population. But it isn't? I'm hurting and upset today as I was expecting some advice from the specialist which might concur with my thoughts. He suggests I have a heart to heart with my oncologist. But I had already done that on 24th February ;he changed my AI from Anastrozole to Letrozole and the pains have become much worse and in new places. I'll have to contact him again. I may have 10-15 years left but I really don't want them to be like this. Thanks for your help and support.

Jean 

[Susanmanchester]

5 years isn’t even a benchmark these days for early stage breast cancer it’s a given for most . I was only given the 10 year life expectancy stats in 2019 by leading cancer hospital which treated me - without anything but surgery it was 60 per cent but with chemo ( 8 per cent addition ) and the rest including rads and AIs brought it to 83 per cent  91 per cent discounting the cancer And at 65  I’m on them for 10 years not 5 . Persevere is my advice the side effects do not last . And being alive with a few aches and pains is rather worth it 

[Jean the Joker]

Hello Tappin, 

Dear me , you really have been going through it all! I'm so sorry to hear that. You have probably read this on another post but someone suggested the book - 'Oestrogen Matters' by Dr Avrum Bluming - I bought it online and am about a third of the way through. It certainly is a game changer when considering these AIs to prevent cancer recurrence in hormone positive breast cancers. Unfortunately my tumour was larger - 23mm, and invasive lobular- but it hadn't spread to lymph nodes. I had massive breast reduction, radiotherapy for 4 weeks, and should theoretically be on these pills for 5 years. The pills give me a 97% survival rate instead of 95% so I really am questioning if it's worth it. Letrozole has actually given me more pain than Anastrozole so I am going to change back - but I'm chasing a few leads before I give them up altogether. I might ask my oncologist if it's worth changing to Femara. But what worried me is that maybe the 'damage ' has already been done to the bones, heart, etc.

In the book I found a study carried out by a Dr in Barcelona - and he advocates HRT both for postmenopausal women and breast cancer survivors. I'm in Spain about 450 kilometers away , so I emailed him and am waiting to hear back - I've asked for advice by teleconference or phone. If you can, get hold of that book and I'm sure it'll be en eye-opener. The basic thrust of the book is that HRT as the really bad guy for women, is based on unfounded and biased evidence but always propelled by fear, the medical profession kept on ( and are still today!) pushing this myth to the detriment of quality of life for many many post-menopausal women. I hate to say it, but it seems that  as far as the medics go, and I realise that they have a protocol to follow, post-menopausal women don't matter.  Why should a few aches and pains be such a big deal? Why should it matter if we are forgetful? Why should we expect a decent sex life? At our age, how dare we? So I think we are on the receiving end of not only ageism and sexism but also ignorance. I think if some of the male doctors had to endure these symptoms and risks ( heart, bones, cholesterol, etc), maybe the pace of research would pick up. 

I'm so sorry to hear about your prolapse and all the problems you've had. My oncologist wouldn't prescribe me anything for dryness, not even a topical estrogen. So another thing I'm planning to do is increase the foods already rich in phyto-estrogens - flax seeds, broccoli, etc - but a lot of them I take already! 

Anyway, I wish you well and I hope that you can get some solutions at your next appointment...

Hugs, Jean x

[Tigress]

Oh @Jean the Joker whilst only you can decide how long you trial the new AI, please make sure that, whatever your decision, you decide for your own sake and no-one else’s.  Not for your oncologist, not for your son but for yourself.  Your experience with these drugs is unique unto yourself and cannot be properly understood by anyone else. 

I do hope that you tolerate the drug well but if you don’t and you decide to stop it, no-one else’s viewpoint and no facts and figures matter.  Good luck, let us know how you get on. 

[tappin]

Hi Jean,|I commiserate! I am now 78 and had the same O8/8 P7/8 HER- as you, two tiny tumours 2mm and 12mm in duct, lumpectomy, no lymph node incursion, but I was offered 5 bouts of radiotherapy, but ended up not having it as I asked for a second opinion and missed the 'window of opportunity. Was put on Letrozole, various makes, not too bad then wham-so many aches and pains stiffness, crawling up the stairs one step at a time, so I asked for Femera the proper one and seemed ok, then Vaginal Atrophy, dry skin, teeth problems, and aches with a vengeance. I had a simple ring pessary for a mild prolapse in 2015, and was happy with that, then all of a sudden, 5 weeks ago it dislodged, and was very uncomfy. Finally managed to see someone and had it put back only for it to dislodge again two days later. Anyway managed to remove it-very sore- and then saw an intermediate gynaecologist clinic dr who put a different type in and that became dislodged because of the atrophy and dryness. I broke down on the phone on Monday trying to get an appointment, sooner than 3 weeks as I was in so much pain, and it was a type I couldn't remove. Managed to get a cancellation for yesterday, (with a very understanding secretary's help)' and had it removed but it was sooo painful!  I have been prescribed Vagirox I think it is, topical oestrogen inserted each day to help with the dryness and we'll see-only used it for 10 days and no difference yet.

Then I was prescribed Tamoxifen instead of the Femera because I had taken HRT for 30+ years and had to stop cold turkey after my diagnosis, which sent me into meno with a vengeance! I am not going to take it as the side effects seem worse than the Letrozole! I take a blood thinner and it is a contraindication for Tamoxifen, and I also have a BRVO, and have injections into my eye monthly, and again the Tamoxifen can cause eye problems and possible blindness- and the risk of endometrial cancer is greater although it does help protect against breast recurrence. I am now looking at bio-identical HRT and be done with all the meds, as you say it's quality of life at this stage! I run a B&B usually, and went from a busy energetic septuagenarian to a stiff old crone! 

I have also asked to be seen in Oxford-not far from me- as my risk is low another is a school of thought that older women with low risk may not need the adjacent treatment. I know I don't want to experience my recent weeks again that's for sure!

if anyone has stopped and taken HRT either regular or bio-identical I'd be very interested to know! 

It's just as well we don't know what's around the corner!!

[Jean the Joker]

Hi Momcat, and thank you so much for asking about my appointment last Friday. I am hoping that this AI won't affect me so much emotionally. I am anxious and get bouts of depression ( increased since  my operation and treatment and also on these pills). So my reasoning was that if another one still gives me the aches and pains without the depression and mood swings, then I'll try the trade-off. I also have arthrosis, arthritis, and a lot of herniated discs in back and neck and already do quite a lot of things to help with that  ( apple cider vinegar daily , epsom salts baths 2 or 3 times weekly, yoga stretches daily ) and try keeping myself very active ( walking, swimming, dancing) .  I also find that sugar and alcohol aggravate the symptoms so tend to avoid or greatly reduce  those two. So maybe all that helps with those symptoms. I hope so. 

The oncologist is a young guy and is very helpful. I initially was put on Tamoxifen in 2021 but that lasted only 2 months as I was becoming suicidal. So we started the AIs  about 18 months ago. I did notice the bones, joints starting to hurt me but I felt stronger emotionally. But recently, last few months - it's all got worse, especially the mood swings and my memory. So I asked him about the Allred test and the Oncotype and he explained it all clearly. It seems I have 8/8 and 7/8 and HER - negative which he said was all good- I assume receptivity to the meds. He's brought forward my Bone density test and mammogram to June ( was December) and suggested some cream for dryness. He also said I have 95% chance of survival in 5 years without meds but 97% with. This is similar ratio over 10 years  and protection from AI increases to 4% in 15 years. I discussed this with my son, who is here visiting and he thinks I should stay on meds. I'll try it for another while and see how it goes. If I can manage the pains, and bone density isn;t affected and I don't get so down, then maybe I can stick it. It's early days though - not even a week yet! 

Anyway, I feel a bit more positive and hopeful...have to try it and see. 

Thank you so much for your support , wishing you all the best!

Jean x

[mimimom]

Thanks Jean. Hoping for some answers at my survivorship appt on Thursday

[mimimom]

Momcat... Thank you so much for your reply. I should know the exact score of the onco test ( think around 18) but low enough that they passed me on chemo. I am pretty trusting and never sick until this so also pretty trusting. Just do what doc says. Learned my lesson on this medecine.  I am on a break from all meds until I can regain use of my hands, shoulders, wrists and knees and pain control ( been almost 4 weeks off)  I have a big meeting with post treatment people Thursday and I will address it all then and get back on track. I have new oncologist appt also. I was ok/doable on anastrozole for a good three months but then it got bad quickly. When I talked to oncologist she said to just stop taking and put me on Tamoxifen. After a week on that I was worse. That's  when I went off totally. Just suprised that it is still working and in my system after almost a month. Part good news I guess. 

[Momcat]

Wondering how your oncologist responded to your questions about Anastrozole and if your tumor was saved somewhere  so it could have the Oncotype DX test to get some percentage scores. Word of caution- Letrozole was equally poison to me- same killer side effects. Hang in there!  =^..^=

[Jean the Joker]

Hi there Mimimom, 

Thank for your post. Re your question how long does it take for side effects to go, I honestly don't know. But I know that for some it's not long and for others longer. It's the same as when I started the medication, I immediately felt side effects which took a few weeks to subside. The nurse said it can do that. Then I had a period of relatively few side effects and about three months ago different side effects appeared. We are all individual and react differently to these chemicals. I saw the oncologist on Friday and he's now changed my medication from Anastozole to Letrozole.  They do the same job, but I think also the 'make up' of the pills could be different - I mean it could be something else that's put in the pill ( not the AI)  that's causing discomfort. But I know that Estrogen is essential for the bones but I understood that our levels return to 'post- menopausal normal' after treatment stops. I've been advised to try these for one month and if symptoms are no better, then I might have to try yet another or go back to Anastrozole.

Sorry I can't help more. But persever - Tamoxifen was a no no for me too! AI is much better although not great. 

Good luck! 

Best wishes, Jean

[mimimom]

I relate to your input. Horrible bone/joint pain after 3 months on Anastrozole. At 77 quality of life important. However, stopped almost 4 weeks ago & joint/bone pain worse as ever. Does it take long time to reverse the effects?  Appears so

[mimimom]

Thank you. Just joined this post tonight & first person I can seriously get behind & relate to. I just turned 77- up til several months ago a very active productive 77!!!  Now I feel like 100!!!!!!  Lol. I had lumpectomy 30 radiation treatments & seemed to get through as we all do but was not prepared for the effects of the meds. Never gave it a second thought. However after several months on anastrozole & week on tamoxifen which made it worst-  I had to stop due to just serious reaction. Been off for four weeks & still experiencing same  if not worse bone/joint pain. May be me & my age but any input as to how long joint pain lasted after STOPPING meds would be soo appreciated. Not complaining but just looking for insight. Seeing new oncologist next week

[Jean the Joker]

Well done Momcat! 

I can understand that decision completely! But I guess it all depends on many factors in each individual case. I'll be bashing the poor oncologist's ear on Friday for all the information I can get to make an informed decision. Fingers crossed!

I agree 100% - I'm 75 and quality winds over quantity every time, for me at any rate !

Enjoy life! 

Thanks for your contribution! Jean 

[Momcat]

Glad you stopped the A poison & are feeling better. My blood pressure went way up to. You can only try and try to deal with the drugs for so long. After much research & thought, I just simply stopped also.  Best decision ever. At 71, quality of life is the priority,  especially if you were normally an active person. My oncologist & radiologist agreed with me, my surgeon did not. My life, my decision.  Come alive again & stay well.

[Jean the Joker]

Hi Tigress, 

Good morning and thank you so much for being so helpful. I'm so sorry to hear about your mother and I can fully understand the trauma that would cause. During the pandemic my EX was diagnosed with dementia and ended up on a park bench 12 miles from home, in London. I live in Spain, so trying to get him help at that time was very stressful and upsetting. Fortunately, he's now in a home, after a spell in hospital and at last , is being looked after. I myself have had an awful lot of trauma in my life, even in childhood. In fact, sometimes, I think it's a miracle I'm still alive. I do believe that trauma plays a part in Cancer diagnosis, especially among women. There is ample literature showing the connection between ACEs ( Adverse Childhood Experiences) and illness or chronic pain in later life. All that stuff has wreaked havoc on my nervous system and fortunately I'm now able to get some support in the form of counselling therapy online. And that's been helping. 

Thanks for the Allred info- another one for me to flag up! He's going to LOVE me!! 

Many best wishes and good luck on your journey! 

Jean 

[Tigress]

Hi Jean, 

The Allred test measures the amount of endocrine receptors in your tumour.  It measures out of 8.  So my score was ER+ 8/8 (ie 100%) PR+ 6/8 and HER2 -.  So as I am highly positive in the two main female hormones, oestrogen and progesterone, I would be very responsive to endocrine treatment  - if it wasn’t for the horrible SE. 

I see a neurologist regarding an ongoing neurological condition and she did a couple of tests and a questionnaire which includes family history and has declared me high risk.  In April I am seeing her regarding my neurological condition and am likely to have a brain scan which will show if there is an infarction (or multiple) in the brain.  Many strokes and TIAs and dementia in my family.  So I don’t think it’s something you can generally get without seeing a specialist.  


I gave up work to become my Mother’s carer as she lived with dementia and the experience has left a deep and lasting trauma, far worse than my cancer diagnosis but that may be because I was lucky to get away (so far) with a luminal A diagnosis.  Anyway I don’t want my mother’s experience for myself.  If it was just the threat of BC obviously I would go for the treatment but it isn’t. 

You’re doing the right thing in asking all of these questions but I’m not trying to encourage you to go against your oncologist’s advice for the sake of it.  Just quiz him or her to make yourself as sure as you can be that your treatment plan is the right one for you in the round. 

[Jean the Joker]

Sorry Tigress- I thought you were Pips ! Thanks for all the info! 

What is the Allred test? 

Many thanks, Jean 

[Jean the Joker]

Thanks Pips and no problem re long post. I keep seeing this 7/8 thing and have no idea what this is about? 

As we said before, each of us is an individual. I also had surgery - lumpectomy and massive reduction in both breasts ( wide margins), followed by  4 weeks radiotherapy.  But my tumour was ILC - invasive lobular carcinoma - grade 2, also slow growing and 'early detected'. I have noticed the cognitive decline  too - it's very fast and very worrying. I do wonder if increasing my chances by 2% is worth it for the risk

of dementia. 

By the way, how can you calculate your risk for that? I guess that's a neurology test? What is VA when describing your symptoms? 

Well, I've certainly got lots of questions for the doctor on Friday! 

Many thanks, 

Jean 

[Jean the Joker]

Hi there Pips, 

I just looked at it and it seems it's not as good news as I was expecting. So now I am more concerned than before. But it also says that this tool should be looked at in consultation with the doctor, and also for women over 70 the table may not have high degree of accuracy . So I'm seeing the oncologist next Friday so will ask about it then. Also, as I expected, the hormone treatment doesn't actually increase my chances it seems by more than about 2%. So glad I've got this to discuss with him on Friday. Thank you so much.

Best wishes, Jean 

[Tigress]

https://breast.predict.nhs.uk/tool

@Jean the Joker this is the link to Predict if you haven’t found it.

How much the oncologists use it, I don’t know.  How much value it has I don’t know either but it’s an NHS tool so it must have some.  Everyone says that statistics are meaningless as an individual will never know on which side of the line she will be until it’s potentially too late to do anything about it but I think getting as much intel as possible to help you take decisions about your treatment (and life) as long as it is done in conjunction with your medical team, the better.  

I was diagnosed with, what used to be called, luminal A breast cancer - small, grade 1, slow growing - at the age of 66. I have been repeatedly told by my oncologist that I am very low risk but as my tumour was 8/8 ER+, who really knows? 

I had surgery and rads, both of which were fine apart from terrible fatigue (ongoing) then given Letrozole.  My side effects were VA but mainly cognitive, both immediate.  My oncologist has moved me on to Tamoxifen to help with the VA.  However both AIs and Tam break through the blood/brain barrier which is what causes the cognitive problems - lack of concentration, brain fog, poor reasoning, low mood - and as I am high risk for dementia and the cognitive impact was immediate, I am seriously considering binning all endocrine treatment.  I will make my decision once I have seen my neurologist in April.  I have said before, I’d rather die of BC than live with dementia and I am resolute in that stance.  

I did the Predict test and it gives me a high chance of being alive in 5, 10 and 15 years with less than a 1% increase in survival with endocrine treatment.  It doesn’t yet have the facility to put in your Allred score so that may make a difference.  So I have a 70% chance of being alive in 15 years but obviously there’s no indication of what state I’d been in.  If I’m living with dementia, I am not interested.  Depending on the outcome of the neurology tests, this is what I will say to the oncologist.  You never know, she may be ok about it as I am low risk 🤷‍♀️

Don’t be afraid to get all the data and use it to discuss your concerns and preferences with your oncologist.  Oncologists role is to aim for cancer elimination but, often, at any cost, hence the initial “one size fits all” approach.  Our priorities change as we get older so challenge it if you believe there is an viable alternative more acceptable to you.  If you still decide to go with the original plan, all well and good. 

Apologies for the long post. 

[Jean the Joker]

Thank you Pips, 

No I haven't done that - is it an online thing? Many thanks - I'll check it out.

Best wishes, Jean

[pips88]

@Jean the Joker 

Have you looked at predict breast cancer? You can input specifics related to your diagnosis and it will give you a more tailored set of statistics. It's helped me make some choices. 

Pips x

[Jean the Joker]

Thank you Tappin for your response. And I do agree that everyone's experience and prospects are all very individual. So much depends on geno-type, stage at diagnosis, hormone receptivity, age, life-style, ec. And even two people roughly same age and with similar prognosis, can have different experiences on the medication. 

I'm curious as to how you are finding the 'Estrogen Matters' book? I thought it was mostly about HRT for younger women. I'm trying to find out as much as I can about the blocking of Estrogen in post menopausal women. I know we do need it and I know we lose it naturally after menopause - but my question is this: Is the additional blocking of estrogen ( Anastrozole)  for the purposes of avoiding cancer recurrence( in someone with low risk) , just a step too far? I'm trying to find out my risk with and without this medication. If anyone out there knows , please post. Thank you! I'm now 18 months after operation, radiation and have been on meds this long. I have oncology appointment this coming week- 24th. Last time it was a perfunctory check - no blood tests, no bone tests, and naturally I'm concerned that something could be going on but it's not being picked up by the doctors. I'm 75 but very active for my age, healthy mediterranean diet and regular exercise: swim, hike, dance, garden..etc. But no medical professional asked ever asked my about my life-style - only if I smoke or not! I guess one size fits all! No! 

Thanks for posting, 

Jean 

[tappin]

Because although I am now (just) 78 I took HRT since my early 40's right up until after my lumpectomy and discovered the grade 1  2mm and 12mm tumour DCIS were oe 7/8 +. I went Into menopause like a drop down a liftshaft! As you say the tamoxifen only affects the breast tissue, not other areas of the body, so I'm hoping it will allow my bod to recover from the onslaught of Letrozole. I am reading the Oestrogen Matters book at the moment and it makes interesting reading-most trials that came up positively in favour of oestrogen were suppressed and most of the trials which did the opposite were lauded-I think there was a lot of media pressure by the drug companies to promote their wares. Everyone's journey is different, different outcome predictions, so many young women suffering, the more we read about others experience the better informed we will be and able to make our own judgements.

[Momcat]

AGLAS          I kept telling myself side effects will improve or at least settle into a tolerable means. That didn't happen. I totally understand your barely being able to get out of bed., no energy at all, terrible joint pain constantly, can't sleep but when I did fall asleep, it would be for 10 hours& that's totally not me.  Food didn't taste good anymore & I wasn't even hungry.  Ive always had long, thick hair but it was getting so thin, i was almost afraid to brush it. All that made major depression.  I had to regain my life, so i quit all the poison & its amazing how you start to feel better again.  I think the doctors go by the one size fits all book--take the pill for 5 years, or take it for ten years.  Ask about the Oncotype DX Breast Recurrence Score testing. It gave me piece of mind & I made the decision that was right for me- no more poison drugs. Best of luck to you.