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Is There a Deadline to Start Anti-Estrogen Therapy?

macdebbie
macdebbie Member Posts: 65

I saw my MO on Monday, and we VERY briefly discussed the options for my anti-estrogen therapy, and I decided to try Tamoxifen since I have osteoporosis and don't want to be on a bisphosphonate too.

I tried to go over the serious side effects with him, but like with the other MOs he kind of skimmed over things and minimized their likelihood. Seems common with MOs, the last one I saw did the same thing - actually wouldn't even discuss them with me, just wanted to prescribe one. Dr. Susan Love said this is common with oncologists, even though anti-estrogen therapy can be as toxic as chemo, the side effects are often glossed over, probably because no one would take them if they knew.

In any case I looked at the drug contraindications today for Tamoxifen and other than the handful of drugs where the contraindication was additive for liver damage or kidney damage, the majority of the drugs noted the possibility of Long QT syndrome. In reading the Professional version of the rationale, it seems there are many, many drugs (over 300) which include some very common OTC drugs - Pepcid, Immodium, colonoscopy prep, propofol (which was used during my lumpectomy and is also used during colonoscopy) and some very common antibiotics, etc. that have this potential to exacerbate the Long QT Prolongation cause by Tamoxifen.

Long QT Syndrome can cause Ventricular Arrhythmia, which is quickly fatal in the great majority of cases. Non-pharacologic additive risk factors are age (older), being female, and having bradycardia or slow heart rate, which I have (it's most often right at 50).

https://pubmed.ncbi.nlm.nih.gov/29720397/

Given this, I don't feel comfortable taking this until I can talk to my cardiologist about this. Unfortunately he doesn't do virtual visits, and he's very hard to get in to see. I also can talk to the pharmacist, but she of course doesn't know my cardiac history. So I either just take it and risk something serious and potentially fatal, wait until I can get an appt with my cardiologist, or call my MO and ask to be put on an AI instead. I know AIs also have their share of potential heart issues, but I am not versed in what they are. It would be nice if an MO sat down and went over complete medical history, and prescribed based on the option with the least amount of toxicity.

I didn't know if there was a "deadline" by which I need to start these meds. I finished my radiation the day after Thanksgiving so I am already a month out (my MO is very hard to get into and this past Monday was the first available appt. I could get.

Not sure what to do...

Comments

  • alicebastable
    alicebastable Member Posts: 1,926
    edited December 2021

    The thing is, EVERYTHING has side effects. Look at the enclosure sheets with Tylenol, Motrin, and aspirin. But the equally important thing is, those side effects are what has happened to just a few people for each scary SE listed. It certainly doesn't mean they are common or WILL happen. But if even one person gets an oddball reaction to a drug, it has to be listed. That's why your MO doesn't go into SE details, because the chance of having a bad SE is tiny, but the chance of the drug preventing future cancer is huge. Plus, some people get psychosomatic symptoms when they hear or read about them.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited December 2021

    There's no deadline. It just depends how long you are comfortable with not treating any possible cancer cells still lurking about. And the side effects lists always look way scarier than they really are. They have to list every possible side effect no matter how rare. Cancer is more likely to recur than for you to have a rare side effect.

    Edit: didn't mean to repeat everything you said, Alice! Your post wasn't there when I started and then wandered away. :)

  • jhl
    jhl Member Posts: 173
    edited December 2021

    Hi Debbie,

    Long QT syndrome is a rare phenomenon. Most people with long QT syndrome who may develop the more serious torsades de pointes are either inherited or linked to genetic mutations. A few, as you have seen, can be linked to drugs. Those of us who deal with hospitalized patients and their drugs are very familiar with the drugs that can cause this phenomenon and they are often given intravenously. However, we rarely, if at all, will discontinue a drug that potentially will cause this. Rather, we watch the continuous EKG for any changes & in the very rare circumstance that it can happen, we then will make a change. In the outpatient setting, there are only a few hallmark interactions that may cause concern. Those are when a patient may be taking amiodarone or sotalol (antiarrhythmics) and may need an antibiotic or a drug to treat nausea. Long QT in otherwise non-affected genetic individuals is also exacerbated by hypokalemia. The incidence is 1 in 7000 patients or 0.014%. The absolute risk is increased if you've had a previous cardiac arrest however you would have be counseled on this if that had occurred.

    Debbie, I wish I could take away the severe anxiety you have of medical procedures. When I first started my career several decades ago, we were living in an era in which patients were not encouraged to educate themselves. In fact, most physicians really didn't want patients to ask questions. I recall feeling that patients really needed to be involved because they were their own best advocates. However, now information is readily available to everyone which I applaud. However, for patients like you, there is very little information on risk stratification so these rare side effects seem as common as aches and joint pain. But, they are not.

    With all that, I would encourage you to think about your risk as you look at these side effects. As ParakeetsRule mentions, not taking tamoxifen carries the risk of cancer reoccurring. That puts you in an entirely different approach to breast cancer. There is no time limit on when to take the tamoxifen. I will also share that when considering a drug induced QT prolongation, we think about the amount of drug presented to the body (hence increased frequency with intravenous medications). So, you could start the tamoxifen & at your next cardiologist appointment in a few months, ask for an EKG. There are variations in the length of the prolongation. The QT interval is easily measured and recognized.

    I wish you the very best as you go into 2022.

    Jane

  • macdebbie
    macdebbie Member Posts: 65
    edited December 2021

    Jane, thank you for that explanation. I am trying to be cautious is all, and choose the lesser of the evils (Tamoxifen or AIs). As I mentioned I have had one too many doctors who were cavalier when prescribing meds - either not looking at my medical history or blatantly disregarding it that caused me to end up in the ER. Call it anxiety or PTSD. It is what it is. One bitten twice shy. Three and four times bitten, even more shy. I never had this problem in MA. But I have had more things go wrong that should never have gone wrong here in SC it's astounding.

    If docs spent time going over a patients medical history (not just from the records at their facility, but an actual sit down conversation with the patient about medical problems they have that might preclude taking one drug or cause the doc to lean toward prescribing a different med), made sure of their current meds and then made a recommendation based on that criteria it would relieve a lot of that "anxiety" but they appear to be too busy to do that.

    Instead it seems they tend to prescribe the flavor of the day and don't want to entertain any questions as to why drug X would be better rather than drug Y, as we are of course not all the same. I asked the MO prior to this one why he chose the drug he did and he told me "because it's the cheapest". Sorry, but I expect a doctor to base his medication recommendation on ME and my medical problems and other medications, not because it's the cheapest.

    And so it falls on the patient's shoulders to try and figure out the thing with the least amount of risk for THEM. It shouldn't be that way, but it is.

    I was a financial consultant for over 22 years and spent one hour long meeting with clients learning about their their current financial picture - what they currently had for investments, where the money was invested - taxable accounts, IRAs, 401(k), how they felt about how it was invested, what their goals and needs were, what their risk tolerance was, their age, their past history and experiences with investing before ANY recommendations were ever even discussed.

    The second hour long meeting I provided at least 2, sometimes 3 options to them, educated them about what the options were, how they worked, the differences, the risks, told them which I recommended out of all the options I had presented and why, and entertained any questions that they had.

    I wanted them to feel comfortable with their decision. My "due diligence" came from a point of personal integrity, but I also had an ethical and legal duty to discover, analyze, educate and recommend in this manner due to "suitability" requirements. My recommendation(s) had to meet very strict suitability guidelines, and I had to be prepared to explain to the clients, my boss, regulators, the court system if necessary, why I chose the investments I did for that client based on all of their personal criteria.

    I wish it were the same in the medical industry.

  • harley07
    harley07 Member Posts: 224
    edited December 2021

    @ macdebbie: I've found this forum to be a great source of information and support as I've dealt with BC. However there is a tendency (especially recently) from many members to always support healthcare workers when one of us complains about poor communication or treatment from a doctor or staff. There is a belief that HCW are rarely or never wrong.

    I've spent my entire career working in the technology sector. Many of my current customers are medical equipment manufacturers and like you, I've spent many hours over many months working through options, risks and solutions with my customers. Business is a very different environment from healthcare. HCW staff are burned out from the pandemic, under intense pressure from administrators and insurance companies to see higher numbers of patients to increase revenue and god forbid, do not ever admit a mistake was made due to fear of legal action. The past 18 months has been very insightful as I've experienced several sloppy healthcare practices due to overburdened staff. If I had spoken to a customer in the same manner I have been spoken to by a HCW, I would be out of a job. Customer service in healthcare is non-existent.

    I doubt I'll ever fully understand how the U.S. healthcare system works. It is up tothe patient to advocate for themselves. Keep asking questions.

  • macdebbie
    macdebbie Member Posts: 65
    edited January 2022

    Harley07 - thank you for making me feel normal ;)

  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2022

    Macdebbie - a different perspective on timelines for starting anti hormonal therapy- my MO pushed for me to begin by week 6. I was going on a vacation post surgery and was asking her if I could start when I returned. She didn't give stats or a detailed rationale, she just stated it in a way that made me understand she wanted me up and running on the medicine. She did say that it took a few weeks to get the body up to a therapeutic dosing level so that I feel factored into her thought process. As another poster said, starting is good, do it as soon as you have decided what works for you.

  • threetree
    threetree Member Posts: 1,024
    edited January 2022

    Harley07 - Just wanted to say that I found your post above very refreshing and honest. What you had to say rings a strong bell with certainly some of us.

  • salamandra
    salamandra Member Posts: 703
    edited January 2022

    I tried some meds that had a risk for the QT interval. My psychiatrist (prescribing the meds) scheduled me for EKGs as a baseline and follow-ups. He emphasized that the risk was very remote and he was just being cautious. I ended up not staying on the meds but if I had, I think I would've had yearly or twice yearly EKGs. That would've been fine for me.

    Hormone therapy is always helpful - that's why it's sometimes prescribed prophylactically. So it would still be worth doing even if you started after break. I think research is also showing that going back on hormones after a break can be just as effective as staying on them consistently and helpful for women dealing with side effects. Whether there is some extra benefit from starting on them right away after other treatment is another question. I don't think I've seen any studies about that. It seems plausible that perhaps whatever remaining cancer cells could be more vulnerable immediately after the other treatment but I have no idea.

    I do know that it is very typical to wait until after radiation/chemo to start the hormone meds.

    Some things I think I'd consider in your place:

    Ask your oncologist to do a baseline EKG and a follow up after a short time on the meds; or getting in with a different cardiologist even if it's not your own; or writing a letter to your cardiologist's office and asking for expedited advice; ask your oncologist to consult with a cardiologist of their choosing (my oncologist has consulted with other doctors within her treatment center to help coordinate my treatment); seek a second opinion oncologist who has experience working with patients with comorbid heart issues;

    An AI is also an option - but I'm assuming that you're premenopausal and that's why tamoxifen is the first line of treatment? If so and you would need ovarian suppression to start an AI, that would also add a delay anyway. If not then it might even be preferable as a first line.

    Good luck!