Rejecting hormone therapy
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I went back and forth myself on the pros and cons of hormone therapy. My side effects have been numerous and, and times, debilitating. But the elephant in the room for me is the Grade 3 factor. That is what is driving all of my treatment. Without the AI, there's a 17% chance of distant recurrence in my case. I'm not willing to roll the dice with this, so I'm doing what I can, whatever the MO tells me to do. Right now I say a few swear words at the bottle of Letrozole every night, and then take it. Then get up the next day and walk, stretch, cook a healthy meal and so on.
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PrincessButtercup, so funny when you say a few swear words at the bottle of Letrozole. Someone else said I thank the letrozole pill since it is keeping me alive. I too tried a positive attitude to thank the little pill but I can't make myself
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PrincessB, where did you get your statistics on the risk of recurrance with or without the AI Letrozole? Did your oncologist tell you that? I would like to see an online calculator where we could plug in our information , grade, path, etc. and come up with statistics although I know that nothing is for certain.
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LillyIsHere - Funny about trying to appreciate the Letrozole pill. I call it my "poison pill" because of it's toxicity and side effects. I think ten times over before finally taking it and I too do something like say a few swear words, as PrincessB does. I saw where someone on here says she thinks of it as her "little friend" because it helps her stay alive. What I want to know is how are these people who "like" their pill so sure it is keeping them alive? Many recur on this drug, and at best, it appears to buy us time, while putting us at risk for things like heart disease, along with having to endure the usual side effects. I just don't see how anyone can think that this pill is necessarily a lifesaver and such a grand thing. I too try to look at it from a more positive perspective, but just can't get there. None the less, so far, I continue to hang in there with it.
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Racheldog, there are two on-line calculators that do exactly what you want. Important to note that both project survival/mortality rates, meaning that they consider distant recurrence only. AIs/Tamox also reduce the risk of local recurrence, but generally local recurrences are treatable so those are not considered in these models.
https://breast.predict.nhs.uk/tool Note that the input on tumor size is mm not cm. Results can be viewed for 5 years, 10 years or 15 years. My MO actually quoted my PREDICT results to me, so he considers it to be relatively trustworthy. The results can be a bit confusing because they include death from all causes and then separate out breast cancer deaths. Because of this confusion, I find that the results are easiest to interpret if you use ICONs for viewing.
http://www.lifemath.net/cancer/breastcancer/therapy/index.php Here the input on tumor size is in cm. Only 15 year mortality results are provided and no charts are available for viewing so you need to be able to understand the stats. But this model provides only breast cancer related mortality results so that's easier to understand. I find that last line of the results summary is helpful; it says how much the treatment added to survival rates, as in "32% fewer cancer deaths after 15 years" - that's an example from my inputs which means for me, that's the relative risk reduction benefit that I'm getting from the AI.
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My experience so far: The 1st week noticed a runny nose and stiffness in my knees. It was explained to me to at least try the hormone therapy and if SEs were not manageable we could try another. I kept going, walked and moved more, drank a ton of water. Do at least 1 exercise class per week. My exercise is mainly just walking. Get out of the cubical every hour or so and take a lap around the building. My baseline DEXA is osteoporosis in left hip, osteopenia in my spine. My 1st MO was able to get 1 Prolia injection approved through my insurance, and I have not had one since. My 2nd DEXA was worse than the 1st, still denied coverage. My 3rd DEXA is due this December so this is a very interesting topic for me now that I'm 3+ yrs taking the AI. Should my bones be getting worse and insurance won't cover me for the shots, then that's a conversation I will have with the MO on possibly quitting.
I had the hair thinning as well. Still happening. Daily! I don't color my hair either, just using the thickening shampoo/conditioners.
Edited to add, I take Glucosamine (liquid form now that I have a swallowing issue) and that is what works for me and the pain.
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ThreeTree,
I don't call my AI, currently Exemestane, my little friend but I'm fairly certain it's keeping me alive. I have been on AI's only for 10 years. I am stage IV and have had no progression. Can I say with 100% certainty that this is the thing that has kept me alive? No, but given I've never had any other tx, save for rads to the bone met, I would say they've played a major role. Clearly at stage IV my position is very different from those at earlier stages and my long term survival is quite the motivator to continue taking them. I do have joint pain which I manage fairly well but that's about it as far as se's go.
I am certainly not saying that some don't have serious side effects. What does bother me a bit is references to these drugs as poison and toxic when for me and probably others, they have been lifesavers. I also don't understand assuming that one will have se's, especially bad se's, before they've even taken the drug! Again, I understand that for some the se's can be debilitating and even for me the joint pain is something I could do without but I can cope.
We are all free to accept or decline any tx our doctors prescribe. These drugs are not perfect and they never guaranteed one would remain recurrence free. So, after ten years at stage IV with no other drugs, I'll go out on a limb and say it's keeping me alive. Again, my position is very different than early stagers but these drugs do have their place and se's are not debilitating for everyone. Let’s not do a wholesale denigration of something that has clearly been helpful to many even if not for everyone.
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exbrnxgrl - I totally understand everything you are saying. I've notice your unique situation now for some time and I am amazed by it. I think you have done amazingly well. I have an old childhood friend who has been surviving with stage 4 pancreatic cancer now for 15 years. She has and does things that she is absolutely convinced have helped her stay alive (primarily Avemar), along with all of the traditional treatments. She tells her doctors about some of these things, and while they can't really comment on the complementary things she does, they always just tell her, "Keep doing whatever you're doing!" because it seems to be working and that she is an amazing exception to the rule.
I would say that to you too, exbrnxgrl - Just keep doing whatever you're doing, because whatever it all is, it is truly working for you.
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Beesie - The moderators ought to just post those calculators in some permanent place here. You note them for so many people so often, that it seems they should be a regular feature of the board. A lot of people find the info those calculators provide very helpful.
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Thank you three tree! That is amazing about your friend. I am not very knowledgeable about pancreatic cancer but I know it is very serious. I am doing nothing other than conventional tx. No supplements, protocols or diets. So swallowing an AI every night is it! Yes, I have come to discover that my situation is somewhat unique. I have always been a weird one 😂
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Hi Beesie, I have done both of those calculators and I will look again but I wanted to see a calculator that showed the exact (or predicted) percentage of risk by not doing hormone therapy. As I recall those calculators incorporated that information but maybe did not have enough input of each woman's path results. I will look again though.
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I looked again and neither of those calculators incorporate whole breast radiation. Wish there was one that had the "whole potato" of information we could input. I thought I had found a different one on the net but now I cannot find it. Yes, I agree the moderators should have a place where all these calculators can be accessed easily.
I am not trying to be against medical advice for these AI drugs but with SO many women bailing out on them that is worrisome and not just being gunshy. I will try them but I already know of a couple friends who just could not tolerate them, period. I am older and for what is left of my years I want to be able to function. These drugs really have some horrific side effects on the body. Already with my journey of the chemo/rads/herceptin , etc. that was rough. Just slowly coming around to feeling like myself again but not 100% yet.
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exbrnxgrl - You're quite welcome!
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@ ctmbsikia
My baseline DEXA before starting AI showed mild osteopenia that got worse two years later (my MO orders DEXA every other year.) I was put on Prolia and stayed on it for four years (8 injections). Last DEXA showed NORMAL bone density, I.e. better than when I started AI. I had no issues getting approved for Prolia by my insurance company. I was under the impression major insurers changed their rules over the last few years and now routinely approve women with history of breast cancer and on AI treatment if the provider demonstrates worsening of bone density while on AI. Please work with your MO office to understand why you were denied.
I didn’t even go to the medical office for injections. They would send me a prefiilled syringe for self- administration every six months. It was very easy and cost effective.
All the best
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Racheldog, it's important to be aware that for the most part, people who are on the AIs without problems are not posting here.
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Racheldog: The other calculator is the Tuft's one: https://www.tuftsmedicalcenter.org/ibtr/ This tool is for radiation and hormone therapy, with and without either. It is a recurrence calculator, not a mortality one.
Another interesting site regarding long term recurrence is: 20-Year Risks of Breast-Cancer Recurrence after Stopping Endocrine Therapy at 5 Years
It is apparent that SE's are affecting compliance and, therefore, recurrence. It is always a question of benefit vs risk dependent on one's own situation. I too am facing choices regarding anti-estrogen therapy and am considering risk and options.
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Racheldog,
The two calculators only estimate survival/mortality, i.e. distant/metastatic recurrence, therefore there is no need for them to incorporate radiation, which is a localized treatment.
You'll notice that neither calculator incorporates any element of localized treatment - they don't ask if the patient has had a MX or lumpectomy - and that obviously should be the first question before asking about radiation. Instead, both calculators logically assume that patients have had the appropriate localized treatment, which usually is either a lumpectomy+rads or a MX (usually without rads but sometimes with rads). Generally speaking, for similar diagnoses, survival will be equal whether the patient has a lumpectomy+rads or a MX. That's what's most important to these calculators because they present results based on averages. So if the average mortality rate is the same for lumpectomy+rads as it is for MX, then this factor doesn't need to be included in the model.
The fact that you had whole breast radiation impacts your local recurrence risk, but as I mentioned in my earlier post, that is not measured by these models. The Tuft's IBTRcalculator linked by Pam provides an estimate of local recurrence risk (or in their words, "10-year ipsilateral breast tumor recurrence risk") but this model does not estimate distant recurrence risk.
While I agree that it would be wonderful to have a model that incorporates everything, it's important to remember that localized recurrence and distant recurrence are two completely separate risks that should never be added together - they are not cumulative and each type of recurrence comes with very different implications. So PREDICT and CancerMath provide an estimate of distant recurrence risk and separately, the IBTR calculator provides an estimate of localized recurrence risk. Totally different.
Edited to add:
With both PREDICT and CancerMath, it's really easy to find out what your estimated metastatic recurrence risk is without an AI/Tamox and with an AI/Tamox, and to see the amount of risk reduction you get from taking an AI/Tamox. While that info is provided within the results, the easiest way to get this info is to run the model twice. The first time, don't check off the AI/Tamox box; look at and record the survival/mortality results. Then go back into the model and check off the AI/Tamox box; look at and record the new results. The difference in the results is the metastatic risk reduction benefit you get from an AI/Tamox.
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Wouldn't the likelihood of distant recurrence be affected by a local recurrence in which some cells broke of (from the local recurrence area) and then spread to somewhere like bones or brain? It seems to me that if you had a local recurrence your odds of getting a distant recurrence could possibly go up, depending.
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ThreeTree, yes, but those cases where a localized recurrence end up resulting in a metastatic recurrence are already captured in the survival/mortality stats. The survival/mortality rates don't specify if the metastatic recurrence happened in one step or two.
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Beesie - Thanks very much for the explanation. Makes sense.
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I am considering Prolia by other doctor suggestion(not my oncologist), but she mentioned that the issue with Prolia-you can not stop it ever. Because after you stop you bone density is rapidly gets worth.
I will discuss it with my oncologist. But please let me know what you know about this issue?
thank you
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marinochka,
Prolia is denosumab , which is the same as Xgeva. I know that there are members who have stopped Xgeva and I stopped an older bisphosphonate, Aredia, after 3 years. My bone density did not get worse and taking it indefinitely was never part of the discussion. I am not saying your doctor is incorrect but I have not heard of this before. Clearly, I have some reading to do.
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Here’s a quick explanation of the Prolia issue. Live and learn!
https://nwhn.org/is-it-dangerous-to-stop-prolia/
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PamEP, yes....that is the calculator I had been looking for but I now see that is mainly for ipsilateral recurrence. Appears once you have a radiated breast and get another local recurrance in same breast , no more radiation. Plan would be mastectomy.
Beesie: a lot of great information, thank you. I did question, like Three Tree , for a small resected early tumor the possibility that some cells slipped away and micrometastasis happens. It is all quite scary. Thus, getting the risk of recurrance out of our brains is so difficult. Working on that too!
Gonna throw this out there: did anyone add DIM to your daily supplement regimen, maybe in addition to your AI?
So unfortunate that DIM has not had any scientific studies to compare if it really does anything as an anti estrogen or aromatase inhibitor-like supplement?
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thank you, exbrnxgrl
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I was on Xgeva (yes, same drug as Prolia but higher dose). I was on for approximately 2 years and now off a little less than two years. No fractures yet and I have bone mets including spine mets.
I see that the article says there is a risk in discontinuing. I should get a DEXA scan, the oncologists never refer me because I’m Stage IV.
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@ Marinochka
Prolia is not given forever. They recommend a dose of Reclast six months after the last Prolia injections as some recent studies suggested this makes the transition smoother. I am less than two years since stopping and haven’t gotten another DEXA yet.
I gladly agreed to Prolia also because there’s some reduction in bone mets risk in women on Prolia, that was a major selling point for me, not just bone density maintenance.
So far, it has been an amazing drug for me that I tolerated well without any side effects.
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thank you, muska, good to know!
So glad to hear that it can be amazing drug without SE, for some of us at least!
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racheldog,
Yes, this is all scary. The unfortunate reality is that there is nothing, absolutely nothing, we can do to potentially remove or destroy every bc cell that may be floating around your body. Teen tiny cells, too small to be detected through any form of screening, can move through the lymphatic system or bloodstream undetected. They may remain dormant for extended periods of time and then decide that your bone, brain liver or lungs would make a good home and bam, you’ve got mets! I apologize if my presentation sounds harsh but this is the scary part that some doctors never mention. People are often stunned when they develop mets as they were told they were “cured”. There is, sadly, no cure but the majority of early stage patients go on to live happy lives with no mets. I am not saying that doctors should dwell on this fact , i.e. possibility of mets, but it needs to be part of the discussion as one finishes treatment. Again, most , the majority, of early stagers will not develop mets.
Even though I’ve been living with mbc for a decade and have reached a place of calm about it (most but not all of the time) I still recognize the scary parts.This disease is not fluffy and pink!
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