Choosing cancer risk over medication risks

[MistyK]

Sorry, JoanneN, can’t help you there. It never even cropped up in any of the conversations I had.

Why were you given a Dexa scan anyway? I was not proactively monitored in the 10 months I was on Anastrozole and bisphosphonates. Only at my insistence to check a worryingly painful rib was I granted a CT scan and a bone scan with contrast, but refused 2 requests for an MRI of the specific area. Do you think I should ask for a Dexa scan? Or at least ask why I wasn’t offered one?

Ocular damage or sight loss was one of my greatest fears around AIs. Having three (apparently) PVDs (Posterior Vitreous Detachments) has been frightening enough, although luckily without retinal damage.

[MistyK]

I think you may be overreacting again.

Let me be clear - I would NEVER encourage people to go against their own instincts. It is vital each person is comfortable with their own particular choice. What I do encourage people to do is look deeper into the issues so that they have balanced information, which is not always forthcoming from oncologists, in my experience.

Hormone blockers CAN save some lives. Hormone blockers sometimes CAN’T save a person. Some people would not get a recurrence or metastasis even if they didn’t take AIs. Some people choose quality of life over extra years of what can be seriously debilitating side effects, for a slightly reduced risk of recurrence.

Our own experiences of relatives’ and friends’ tragedies are bound to feed into our outlook.

[JoanneN]

When you’re on AI they are usually offered routinely . Some people seem to have had one prior to starting them to assess bone function then everyone is usually offered one 3 months plus after starting though some people were having problems getting them . Then you get one in two years time providing everything was ok with the first one. I would have thought that you would have been on it long enough to be offered one though perhaps the bone scan with contrast did the same job ? I doubt either of us would be offered another one routinely now we have discontinued treatment.

[MistyK]

Thanks for your reply, JoanneN.

I still have a few loose ends to tie up (radiotherapy tattooed dot is more of a visible blob in centre of chest and I want to pursue removal; itchy bump along scarline which could be an undissolved ‘dissolving’ stitch - it frequently irritates; an MRI scan of tender rib to rule out bc mets or confirm radiotherapy damage; try to get agreement to a routine of blood tests for tumour markers) and unanswered questions about my recurrence risk, taking into account my personal treatment ‘journey’ … but I eventually ran out of steam. Still think I will push for better closure this year.

I tripped over a couple of weeks ago and am still carrying a few minor injuries from that. Luckily, no broken bones, so perhaps they’re not in too bad a shape!

[Kay0987]

Hi Guys! You mentioned something, Misty, but I do think we need to be careful with it. I don’t encourage people necessarily to go against their own instincts but when their instincts are not based on science then I think it can help greatly to point that out. Especially when lives are on the line. Yes, AI’s and tamoxifen can have terrible side effects. In my life I know many people who have had breast cancer. None of them have had those terrible side effects as of yet. Forums such as this can give wrong impressions of how many people suffer from them because those who do naturally come on-line to find others like them. As they should! It’s where info and ideas can be exchanged. But those of us who do not suffer just go about living our lives. And yes, all studies at this point show that the majority of us do fine. Period. Now the minority who don’t is not a small number so IMO they need to come up with something better than the current treatments. But in the meantime we don’t need to gloss over the fact that AI’s and tamoxifen without a doubt has been game changers in breast cancer treatment. To not use them after diagnosis with a hormone positive cancer is a risk. Sure it may be a risk someone is comfortable taking and for them I say fine. But they have quite definitively saved millions of lives and it would be bad medicine for doctors not to push them as part of treatment.

And on another note, my oncologist like the good oncologist she is, did push them. I questioned her and was quite fearful because of forums like these but she told me that yes many suffer severe side effects but the trend was the more active you were, the better you ate, then the better you did on them. And I went on them knowing I was taking a huge risk if I didn’t and hoped for the best. And for me, the best happened. Personally I think every women with a hormone positive tumor should at least try endocrine therapy. If you have issues then you can discuss what to do then with medical professionals. But you may be okay and then can know you have done everything possible to avoid a recurrence. Because if you recur at stage 4, there is no such thing as easy treatment there. And it will last for the rest of your life and there will be side effects.

[TDG]

@JoanneN, @MistyK I just wanted to add what I know about when a bone density scan is offered in the UK after various conversations I’ve had with medics over the last 18 months. I expect that there will be other instances I’m unaware as well.

• A GP can offer a DEXA if there are risk factors (a lot are listed in this FRAX tool which my GP used with me when I raised various questions) and also symptoms such as non-impact based fractures (being a women who has been through the menopause is also one).
• If you are starting an AI, in some instances the oncologist will offer it, and in other instances the oncologist will ask your GP to request it. As Joanne says, the the baseline sometimes happens before starting the AI, and in other a few months into starting it. I had mine done following the latter path, initiated by my GP on request by my Oncologist done 3 months after starting my AI.
• I have heard of some instances where an oncologist doesn’t request a DEXA where a patient has had Chemotherapy as part of primary treatment, based on the reasoning that they would be offered Zoledronic acid bone hardening infusions as standard due to the after effects of Chemo on their bones +/- reducing the higher risk of distance recurrence in the bones. The reasoning appeared to be that given the treatment path they didn’t need to check the baseline DEXA (I don’t particularly agree with that rationale, however expect there is a cost element with some of these decisions).

Regarding the point you mention about a bone scan with contrast, I wanted to clarify that this would not do the same job as a DEXA. The only scan currently available in the UK for measuring bone density is a DEXA. The purpose of other bone scans would be different and expect that there are many available, which I’m unaware of. E.g. I had an MRI of my spine because of back pain, requested via a rheumatologist after he ruled out osteopenia being the reason for it. My rheumatologist has written to my GP to request a repeat DEXA after I’ve been on Tamoxifen for a year to understand what if any effect it has had on my bone density (according to the rheumatologist tamoxifen does offer bone protection to some menopausal women, but not all according to his experience)

On a personal note my AI treatment break which was initially meant to be 6 weeks, got extended to approximately 4 months due to various family emergencies and a family recent bereavement. I have only just started Tamoxifen today. All the side effects I had from letrozole appear to have cleared with the exception of stiffness in my finger joints - particularly my right hand, no idea why. Watching this space and hopeful that I will do better on Tamoxifen than I did on Letrazole.

[MistyK]

Hi TDG

Thank you for this full narrative on the DEXA scan. Perhaps because I was scheduled for 3 years of zoledronic acid infusions to counteract the AI bone weakening effect, it was considered unnecessary to check for something that was already being protected against.
The bone scan with contrast was checking for bone mets to see if there was a strong take-up of the contrast anywhere.
I’m sorry to hear you’ve had such a tough family life lately on top of cancer. I hope you are entering a period of calm whilst you get back on the hormone therapy horse.

[MistyK]

Hi Kay0987

Yes, the Anastrozole gave me most of the usual debilitating SEs which were increasing in severity as time went on. These (such as the sleep disturbance, painful joints - including useless hands eventually, hair loss, low mood or irritability, hot flushes, dry skin, brittle nails, chronic fatigue which leaves one unable to engage with life properly … whilst also trying to get on top of lymphoedema and Diabetes Type 2), and everything else associated with oestrogen starvation (which many people may escape, although I don’t understand how because no doctor has ever afforded me the time to explain much) are not to be confused, however, with my deeper dread of the following:
(NB I did read the Cancer Research UK ‘advice and information on Letrozole’ - designed to be reassuring. Thank you, but it’s not a scientific trial report as such, with backed-up statistics illustrating the degrees of severity across the whole sample group.)

I hadn’t wanted to make what I’d read for myself to be too confronting on this forum but the point I have been trying to make all along is that these were not the only reason for stopping hormone therapy. It was when I looked further into the rare or very rare SEs that I decided I did not want to risk losing my sight, getting uterine cancer, neutropenia (compromised immune system), atypical femoral fractures due to the interference of bisphosphonates with normal bone metabolism (I was beginning to get aching in my thighs - a warning sign) or more commonly, high cholesterol (already raised, and in turn carries risk of stroke / heart attack).

I was offered Tamoxifen instead but its potential damage seemed even worse, including thromboembolism. Even its common / very common SEs lists cerebral ischemia which could result in death, retinopathy (I am already at risk due to Diabetes Type 2), hepatic disorders, benign or malignant tumours… and that’s before moving into the uncommon and rare ones.

So … several risks of death, of which recurring breast cancer is but one.

I am not scaremongering - the information is readily available (on the NICE website, for example) to anyone curious/anxious enough to look for it.

Balancing the chance of any or all of these assaults on the body against a 2% reduction of
‘bc recurrence risk’ seemed like a no-brainer to me, personally.

You mention Stage 4, ie metastatic, cancer. Correct me if I’m wrong, but isn’t metastasis a different issue from trying to prevent a new primary breast cancer from reoccurring using oestrogen suppression? This is the sort of analysis I was unable to get three oncologists to engage in.

Instinct is what compelled me to quickly refer myself regarding a small lump that felt just like all the other cysts before. I ‘knew’ this was going to be the one (and in the course of investigations, another tumour of a different, more serious type, which remained hidden on subsequent mammos and ultrasound, was eventually found in the other breast).
Instinct saved me that time. I’m sticking with it.

I think earlier diagnosis and breast self awareness has to take credit for more lives actually being saved, along with its resultant surgery, radiotherapy and chemo (about which knowledge and methods are improving all the time). Aren’t AIs aimed more at protection and prevention, which you could argue results in less people developing another cancer? I suppose you could class that as ‘saved’ in a way? But equally (or most likely, statistically), they would not have got another breast cancer without the drugs anyway. That’s what I’m hanging my hopes on.

Ultimately, if someone suffers no SEs, or only to a degree that they can manage to live with, and if they do not fear any of the other very serious potential conditions which endocrine therapy can cause, then of course they should keep taking the tablets. They are just not a riskless guarantee.

[MistyK]

Hi again, pneuma.

How did you get on at the oncologist appointment? Been thinking about you.

I’ve just finished a ridiculously long post to Kay0987 (23rd May) in which I debate the whole dilemma of AIs or not AIs. It might be a bit too heavy and theoretical at this stage whilst you’re getting professional guidance, information and a treatment plan off the ground. But it may be of interest to you when you feel up to it.

It’s still very early days for you; a lot to take on board. Hold your nerve. Check in with your new friends here when you get the wobbles.

[Kay0987]

Some of your listed adverse effects for AI’s are associated more with tamoxifen (uterine cancer for example), some I’ve never read about and have some doubt that they substantially exist but either way they are definitely not without risks. For the vast majority of people the risks of getting something adverse from AI’s or tamoxifen though are less than the risks of getting a recurrence in breast cancer whether local or distant. Also, AI’s and tamoxifen do not just protect against a local recurrence. If so then there wouldn’t be so much emphasis on complying with endocrine therapy because local recurrences don’t kill you. Secondaries, however, do and AI’s and tamoxifen protect against those, too. How they do that is to deny hormone positive tumors the hormones they need to grow. That kills them. For some people it only puts them to sleep and then they have a recurrence after they get off the endocrine therapy, but for most people it kills them instead. Now why would you need endocrine therapy if there’s no sign of spread outside the breast? Well because we know now that breast cancer can spread through blood vessels before there are any symptoms. Quite early in fact while they are quite small. These rogue cells can travel and then set up camp in organs and bones developing years later (or months) into a metastasis. Because of this particularly harsh temperament of breast cancer cells those of us with hormone positive breast cancer can never know for sure whether we’re cured. It can come back for up to 30 years after diagnosis. However, taking endocrine therapy substantially reduces that risk and the longer you take it the better your risk reduction (in the first five years they only reduced my risk of developing a future breast cancer by 3%. By 15 years I had a 10% risk reduction) For people who have less of risk reduction maybe the decision isn’t so cut and dry. But they are vital piece of the puzzle in fighting secondaries both before they appear and after regardless.

Now why do some of us seem to do okay with estrogen starvation? Beats me. But we’re out there and thriving. Here’s another article talking about common side effects and the prevalence of them - https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/020726s027lbl.pdf

[MistyK]

Yes, Kay0987, I know there is a case for AIs (obviously, otherwise they wouldn’t be prescribed) and I’m already aware of all the points you make (including that it’s Tamoxifen, which I was subsequently offered, that carries the uterine cancer risk). Also, we won’t all unearth the same buried info. That’s why this forum is so helpful.

Are you working on the assumption that, say, a 5% risk of bc recurrence is worse than a 1% risk of fatal heart attack, stroke or blindness? For some people, that may not be their outlook.
And I don’t consider a reduction in risk of 1/2/3 % as ‘substantial’.

Doesn’t the 10% reduction after 15 years factor in that if bc was going to recur, it would be less likely to do so after a long time clear anyway, so not entirely down to the AIs?
Do you know if the NHS Predict tool includes incidences of secondary bc? I thought it just predicts new primaries that ultimately result in death.

I would suggest that your argument is too easy for someone lucky enough not to have experienced the life-changing impact of debilitating side effects. If you walked in the shoes of those who did for a few months, you might have a more equitable approach.

Again, I thank you for the link to the Femara v. Tamoxifen info. At first glance, some of the side effect occurance %ages do look quite high, but I will take a deeper dive some time.

[Kay0987]

The risk of recurrence for hormone positive breast cancer does go down after five years. But it remains pretty steady at that rate until about year 20. And NHS predicts recurrences but it doesn’t differentiate between primary and secondary or local and metastatic. And as far as an argument goes, I’m not giving you one. I’m giving you facts. You and anyone else of course can do with them what you’d like as we all do because of course quality of life matters. I’m lucky enough that my quality of life is great with AI’s right now. If it wasn’t then of course I might make different decisions based on risk versus reward. But that wouldn’t change the facts I stated which is that endocrine therapy is a vital treatment and to skip it is risky. For some people very much so and others not so much. But there is risk regardless and it’s up to the individual patient to decide whether they are willing to take it or not.

[MistyK]

When I use the word ‘argument’, I mean your side of the debate, perspective, not a row.

[hc1973]

Hello everyone I’m new to this group and to be honest Im now slightly scared having read all these posts! I was diagnosed late December with Invasive Lobular Breast cancer at the time it seemed fairly straight forward as it was hormonal and Her2- . Several biopsies later and they found another lump which was mixed ductual and also that it had spread to my lymph nodes. I had a lumpectomy in February and full node clearance. I then had a Pro Signa genomic test done which showed my risk of it coming back in the high category. Chemo was recommended, followed by radiotherapy and hormone therapy. If currently on my 3rd round of chemo and have 10 more to go. I find it really frightening that despite all these treatments so many people seem to get it again years later. However I’m determined to beat this and I’m also Prepared to do everything it takes! Im 50 years old, I haven’t gone through the menopause yet and I have to say reading some of the above is interesting but very scary. At the moment it’s one’s step at a time. Are there any things that I should particularly look out for or ask about when I do get to this stage? Thanks Helen x

[marie911]

I think that in forums or patient groups we have a tendency to talk more about side effects of drugs and negative experiences in general and we hear less about positive experiences. I was diagnosed last year at 49 with locally advanced BC and my risk of recurrence is very high. It was no brainer for me to accept chemo, radiotherapy and hormonotherapy. I do think the benefits are higher than the risks. All went/is going well. I have monthly injections of lucrin bc I was not menopaused yet and I take letrozole daily. I do have some side effects but they are manageable. My oncologist did tell me at the time that there are other AI she could prescribe if I had issues with letrozole. There are options. I’m also taking Abemaciclib bc of my high risk of recurrence. The risks of serious side effects with Abemaciclib are even higher than with hormonotherapy but I have blood check every 3 weeks and regular discussions with my Oncologist. What I think, is that we need to inform ourselves and this is why I like this forum. I make questions based on everything I read and I go back to my medical team and I ask about. At the end the decision is still mine. It’s good to read both sides, good and bad experiences. Good luck with everything.

[JoanneN]

I think that @marie911 is correct in that the negative experiences are discussed more than the positive - I’m guilty of that because to me this is the place to vent / find out if your experience is common . People do post to say they have had good experiences but often it’s just one post and not part of a thread and again with the recurrence the people who don’t have a recurrence will eventually forget about this forum and just go about their lives . As far as I understand it there’s a 70% chance of a permanent cure . All the best for your treatment and good health going forward xx

[nannabee]

I’m 78, had WLE and SLNB January 31st followed by 5 sessions of RT last month, have to say it all went smoothly and was so easy. I’m now on letrozole for five years and unfortunately it’s increased some of the SE I already have with Lupus - fatigue, joint pain, hair loss - and added a few more just for the fun of it NOT! Yes some days it’s a struggle but then some days are with lupus, I’ve seriously thought about stopping the Letrozole and have juggled around with the best time to take it. I’ve read this entire thread and another long one of the subject and am totally confused as all I know is I had a 6mm IDC with no lymph node involvement and er positive, no numbers no outlooks. Perhaps I was given them and they just went over the top of my head.

Initially I decided to give letrozole a three month trial but have now decided on six months. We all have to make our own decisions on this and please anyone that has read this and is even more concerned please don’t be. It’s entirely your decision and I promise you there are lots and lots of people out there that have sailed through all of this without any problems whatsoever, unfortunately only a few of them then come to forums like this and give the positive side. I am extremely grateful for those that do post on here.

My only advice is gather what information you want, some need lots some need none, don’t panic about the unknown, do what you want to do it’s got to be right for you. Don’t rush your decision.

Stay well all my forum buddies, have an easy and relaxing weekend and remember there’s always somebody here to listen.

Love to you all xxx

[hc1973]

Thanks for your message! Interestingly the oncologist has put Abemaciclib on my plan but I had no idea what it’s for. To be fair I just thought I will deal with one bit at a time and chemo is quite rough at the moment! It’s good to hear that you are getting on well. Helen x

[Kay0987]

I’m so sorry, HC. You are at the beginning stages of treatment and it’s so tough to wrap your head around what breast cancer means. If it’s any consolation you do eventually and although the recurrence fears are always there they don’t take center stage anymore the longer from diagnosis you get. As far as everything you’ve written it reads like you have excellent care. You’re doing it all and as a result you have the best chance of a great prognosis. So my only advice is to follow medical recommendations. If there is an issue talk with your doctor and find acceptable alternatives. And know that the vast majority of breast cancer patients, do get a cure. We don’t know who they are but statistically speaking we know the odds are well in our favor.

[nannabee]

@Kay0987 what a lovely response and something so many of us need to remember, I guess we’ll always worry - who can blame us - but we do need to remember the odds are good that we’ll beat this. Thank you and bless you for making me remember xx