Hello All
I have been taking letrazole since mid December which I have been told I will be taking for five years.
Now my treatment team want me to have zometa/zoledronic acid infusions every 6 months. They have told me that this is to strengthen my bones to a) reduce risk of osteoporosis and b) make my bones harder for my HER2 cancer cells to attach to. They say this is a preventative measure following Chemo, double mastectomy and radiotherapy. Surgery was successful with good margins but 1 lymph node out of the 6 taken showed cancerous cells hence the radiotherapy.
I am really reluctant to have the zolendronic acid infusions due to the possible side effects. I also feel that Iāve not been given enough information to be able to weigh up the pros and cons e.g. percentage of people who get osteoporosis with/without it and recurrence rates with/without it. Also, they have not done a bone density scan to see how my bones are now.
Iād be really grateful for any advice, insight, experience you can offer.
Just to add, I have had a really bad dip in my mental health of late and thatās another reason I donāt feel I can cope with another treatment that could create side effects and the anxiety that this causes.
Thank you
Hi Jayesse
Iām in the same position; Iāve been on letrozole for only a few weeks but my oncologist wants me to go on zoledronic acid to prevent osteoporosis -Iāll probably be on letrozole for 10 years. When she mentioned the biophosphonates a few weeks ago I hadnāt even started radiotherapy so I just didnāt really think about it.
Iāve thought about it since though, and currently I am leaning towards declining it. Like you, I havenāt been given any information as to statistics of women who go on to develop osteo. How can we make an informed decision without that information? A 5% or 50% risk would lead me to very different decisions. Studies etc online give various outcomes and information on risk to premenopausal women is very sketchy. I have a bone scan scheduled in a couple of weeks which will give a baselineā¦Iām inclined to suggest that we monitor my bones and if there is a clear deterioration we can revisit the biophosphonates at a later date. Taking them right now when we donāt know if Iām going to be one of the people who have bone issues just seems a bit like taking more meds for potentially no reason.
Sorry I know this doesnāt really offer you any help, I just thought Iād share how I am approaching it! Just another minefield to wade through eh 
Iām in exactly the same position as both of you. Premenopausal before chemotherapy, I have severe anxiety about teeth and gums and poor teeth generally so really cannot handle the thought of adding potential issues there. Very scared to raise with my oncologist next week but I donāt think I can face taking this. One study I read showed very little difference between those who did and didnāt take it, not enough to make me think it will severely impact my future. But feel guilty at the thought of not taking everything thatās available to meā¦itās so hard isnāt it? X
Oh the dentist issue - sympathise so much. My teeth arenāt great due to other health conditions and a very healthy dentist phobia, so Iām also worried for this reason too. I am going to the dentist on Friday to see what treatment is needed in case my onc convinces me to have the zoledronic, but I am dreading it so much - I was due there last week but it got cancelled so itās just been hanging over my head even longer 
Thank you for your replies. I have dental issues too which is another reason I donāt want to have the zolendronic acid. My consultant said that they wonāt start the zolendronic acid without me getting anything my dentist says is necessary treatment first. I asked if this included seeing hygienist for periodontal gum problems and he wasnāt sure about whether this fell into the 'necessary treatment ā category or would be considered āroutine maintenanceā as far as cancer team are concerned. I asked what would happen if I didnāt want to have dental treatment and he said they wouldnāt be able to give me the zolendronic if I didnāt get dental work done. But then he told me they donāt need to know who my dentist is or have anything in writing, which makes me wonder if people just lie about having seen the dentist at all. I pointed out that I am really reluctant to see the dentist as a) I canāt afford it b) we live in an area where there are only 2 dentists within 20 miles and neither are very good and c) the last time I went I picked up an infection.
I am very much like you - trying to find the balance between living longer/living well and the effect everything is having on my mental health (which the hospital simply ignore). I am 62, post menopausal and I donāt have children and my husband completely understands why I am at the point of saying I donāt want any more treatment that is invasive and has potentially awful side effects, and certainly not without having a bone scan first to see how my bones are looking now.
My relationship has been put under terrible strain through all this too.
I feel like Iām trapped in a revolving door at the moment.
I had a telephone consultation this morning with an oncologist. I finished radiotherapy in January. Before that I had surgery and chemotherapy. I was given letrozole for 5 years. The reason for the call was to discuss zoledronic acid! He is sending me literature about it and I will get an appointment in about 4 weeks to sign consent forms. I did actually see my dentist this week and mentioned this to him as I had an idea this was round the corner. He said the only problem is if you have to have teeth extracted, because the healing can be effected. Fortunately my dentist told me I have really good teeth. My late mother had osteoporosis for which she had 6 monthly injections. It certainly seems to be a treatment that they are keen for us to have. My cancer was HER2 positive and I am post menopausal.
Thank you for your reply. Are you currently thinking you will have the zolendronic acid?
@jayesse ā¦probably will do. I like to think it will be of benefit, particularly given my mum had bone issues. I did break my ankle 3 years ago and all I did was go over on it!
Hi all
I attempted to take Anastrozole for 10 months but eventually gave them up re side effects / poor quality of life. During that time I had 2 zoledronic acid infusions. Didnāt notice much effect after the first one, but the second one 6 months later coincided with worsening AI side effects and it seemed to then compound those significantly. Once Iād decided to swim without AIs, I had no further bisphosphonate treatment. However, it does continue to alter the way bone regeneration happens for years after, so dental work (which Iām undergoing at the moment) carries additional risk of serious bone infection if it gets a hold.
Just one more of the joys ā¦
Thank you for replying.
Is it the zolendronic acid that continues to cause bone degeneration after stopping or the zolendronic acid? I am getting some side effects from the letrazole but both my oncologist and my GP say stick with it as they will calm downā¦I donāt know if I want to but am also scared not to take them as Iāve been told they are needed to suppress the oestrogen that feed one of my cancersā¦
Did you ever have a bone density scan?
Iāve had 7 infusions so far with no negative side effects but a definite increase in bone density. It is scary when you read the possible negative effects but they are very rare. Hope all goes well for you.
jayesse
An oncologist (loosely) explained to me that the zoledronic acid changed (interfered with?) the blood supply to the bones once it was changing the way the bone cells were being renewed. One of the things to watch out for is pain in the femur (thigh) bone in particular. Worse case scenario is that fractures can occur.
It seems illogical to prescribe a drug which counteracts the general osteoporosis effects of the hormone-blocking drug but in doing so poses a risk of fracture to the largest weight-bearing bone ! This has led to a few people - and no, I donāt have the statistics to quantify this - having both thighs pinned. I did start to get this thigh pain (to the extent that it kept me awake, even when I avoided lying on that side) so I was glad to stop the infusions as soon as the Anastrozole was dropped.
Iām unclear about whether it is the āchange in the way bones renewā which continues long term after stopping these bisphosphonates, or whether it is the bone material that was renewed during that period that you live with for a long time, until a completely new āun-interfered-withā cycle of renewed bone has taken place.
By the way, I was never offered a bone density scan. This is a seemingly randomly-offered baseline check. Luck of the draw?
It is this chain effect - of taking one drug to counteract another, and then the next drug to counteract the effects of the second and so on - that makes me averse to drugs in general. Before you know it your body is being managed artificially and you become physically and psychologically dependent on medication anyway.
I would never try to persuade anyone against their own judgement; just giving my own take on this whole business.
I have taken the chance to live without oestrogen suppression because:
The mere lack of oestrogen - whichever type or brand of AI you use - is what causes the (in my case, life-inhibiting) side effects. My side effects increased significantly after the initial 6 months. (The worst of which I recovered from over a few months after stopping hormone suppression; some of which I never did recover from - less sound sleep, significant hair thinning and dry skin.)
Aromatase inhibitors only improved my chances against risk of death from breast cancer by a small percentage (each case is individual), even with my cancers both being highly hormone responsive.
They do not guarantee that cancer will not recur or metastasize.
The difference between the choices that people in the same circumstances make depends on the type of person you are. Put bluntly, there are those who fear theyāll regret they didnāt do something that could have saved them from dying of cancer, and there are those who fear theyāll regret that they did do something (took a drug) that caused a different problem - a different type of cancer, or a fatal cardiovascular event, or loss of sight - when it may not have actually saved them anyway from a recurrence or death from the original type of cancer.
Sorry about all the philosophising. Hope I havenāt muddied the waters for you.
It is all largely down to luck. As a control freak, thatās quite a hard philosophy to which to adapt 
How we all wish for a crystal ball, eh?
Hoping for the best for you 
You and I have exactly the same philosophy in that like you I donāt want to continue on the roundabout of taking one drug to counteract the effects of another but having new side effects instead. I am also very fearful of osteonecrosis of the jaw given I am a prime candidate for it (according to what I have read).
I had 3 types of breast cancer including HER2 positive and they found cancerous cells in one lymph node but they havenāt told me what type of cancer it was.
I feel that there is a need to weigh up the balance between living longer and living well and my feelings is that I would rather live well and get off the drugs roundabout if I canāt do that while taking them. I have already opted to stay on phesgo , which has manageable side effects, than swap to Kadcyla which would be another leap into the dark. One oncology nurse was really off with me when she read my notes and told me I was ālucky to have been offered such an expensive drugā in a really abrupt tone: to which I replied that I was glad that I had therefore saved the NHS some money by refusing it.
I am preparing a list of questions and will ask them for my personal stats re risk of death from breast cancer with/without the letrazole .
Can I ask when did you have all your treatment and do you now feel you are āliving wellā as much as possible. Please donāt answer if you would rather not. Xx
Iām still having mine, three āboostā radio sessions to go! Iāve been on letrozole for almost 4 weeks and have had one zoladex. Iāve got a bone scan next week and then Iām meeting my oncologist on 11 March to discuss biophosphonates, which she has said I will be starting as soon as Iāve had any dental treatment. At this point Iām still thinking Iām going to refuse, but will be interested to see what my bone scan shows up. If thereās already thinning I think I may well end up taking it 
Iāve not heard of boost radio sessions.
I definitely want to know what state my bones are in before having the infusions (if I do) and to know my prediction of dying from breast cancer with/without the letrazole and zolendronic acid. I have prepared a list of questions.
I think the hospital hate me because I ask questions but I want to make my own decisions.
Xx
Hi again.
(I assume the drugs you name are chemo/Her2, as I didnāt come across them and wasnāt recommended chemo.)
I like the retort you gave that arrogant onco nurse. The resistence in medical circles to any criticism or rejection of the drugs verges on the pathological. They seem blinded by the light of āwonder drugsā. Iāve found a total unwillingness to discuss thoroughly the positives of choosing to go without. We are being made to feel ungrateful. I hope they will afford you the courtesy of answering your questions to your satisfaction. (I would be interested to know what your %age increase in surviving breast cancer would be afforded by taking the AI.)
My principal cancer was invasive lobular cancer. A very small proportion of research funding goes into understanding the biology of this specific strain which accounts for about 15% of breast cancers, the 2nd most common, yet behaves very differently to ductal, spreading in a flat linear web rather than an obvious lump which ductal tends to produce. Lobular is, therefore, commonly missed on mammograms and ultrasounds, so tends to be diagnosed later and thus with poorer outcomes. My point being, since current drugs are based mostly on ductal breast cancer data, and since lobular is so different ā¦ without any drug specifically developed for it or targeted at it ā¦ there is even more reason to suspect that, not being designed for lobular cancer, current drugs may not have any influence my own cancerās recurrence risk or my survival statistic.
The side effects from 10 months of aromatase inhibitor (which, after over a year since stopping it, seem to be a permanent legacy) are very thin hair, dry skin, and Iāve never got back to the instant, deep, long, restorative sleep I used to enjoy. What I did manage to rescue was my mobility and flexibility of joints. I can once again go for a walk without it hurting every step of the way, and climb the stairs without pulling myself up by the bannisters, and grip a dinner plate !! I started Pilates last week.
Diagnosed June 2022, DMX July 2022, axillary clearance - my choice (left armpit, following one affected node harvested during DMX) was in August 2022; radiotherapy to left chest wall delayed by a few months due to post-Covid backlog was in December 2022; I started Anastrozole in January 2023 (after fear had prevented me from starting since the previous July); I stopped taking the tablets at end of October 2023, no treatment at all since then.
Hope this helps in pulling together information and experiences you need to make your own choice, and welcome to the club of ānuisanceā difficult patients 
Best of luck, jayesse.
Awww thank you.
I was found to have invasive ductal on the left and invasive lobular on the right. On the left side one lesion was HER2 negative and the other was HER2 positive.
The biopsies post mastectomy showed the ductal cancer on the left was grade 1.
The invasive lobular cancer was grade 2 but HER2 negative.
Absolutely agree with everything you say re the whole process. Today a friend reminded me that hospitals are a business now and often they get government bonuses for using certain drugs, especially in cancer care. Another reason they donāt like us questiining their methods.
What really annoys me is when they deny a side effect can possibly be related to your drugs,/treatment. I now download the research and show them. It pisses them off immensely but it makes my day!
Best wishes to you xx
Hi, Iāve just had my first Zometa infusion a couple of weeks ago with thankfully no side-effects. I was very sceptical about having this but have decided to go along with recommendations for my treatment (Anastrozole 10 years and six monthly infusions for 3 years) unless side-effects affect my quality of life. At 78 time is too precious. Iām a bit annoyed that they wonāt give me a bone scan as Iām having the infusions but if I had declined I would get one !
Excellent. All power to your elbow!
NM bone scan (to check there are no bone mets) undertaken today. Results awaited. 
Let us know how it goes.
Xx