Aromatase Inhibitors: Did you decide to go on them or not?

They use titanium to mark the margins of where the breast tumor was removed to give margin locations for breast radiation therapy.

Report your symptoms to
one of your radiation doctors plus your Internist and cardiologist also if you have one.

Did you have daily arrhythmias during radiation therapy such as during the procedure or directly after? They should be told this.

Hi jjoyce1:

Sorry, I had to re-read your initial postings. I am not a medical dr. or have any medical background
You said that you are having daily arrhythmias since the titanium insert, which is your breast surgery.
I do not know if you had arrhythmias before your breast surgery or if they were intermittent ( Only for less than 7 days and then gone )or constantly.Or if they were constant but not noticeable to you.

1) Let your doctors know, Oncology and Primary, Cardiologist if you have one.
They need to address this.

2) You mentioned you have had this since the surgery.

Breast cancer surgery is stress for BC patients. It is a trauma experience.
Stress causes arrhythmias.
I was in a lot of stress from the beginning of this journey.
If I knew what I know now, I would have gotten counseling, meds, and ant-stress meds from the beginning and practiced breathing stress relief exercises and some form of yoga or other exercises and joined in person and online groups.

3) You are debating 5 days or 3 weeks of radiation. I got through 21 days and the aloe cream really helped and I just had a slight sunburn. Every person is different. I do have very fair skin.
You need to discuss this with the Radiation Oncologist and also have the doctor who deals with your mast cell difficulties in on this to make a plan of action and have Radiation Oncologist keep adaily track of you during radiation therapy. and have a couple of different plans or avenues to use and switch if necessary. They need to work as a team on this and share.
4) Ask the Radiation Oncologist if there is such a thing as starting the radiation plan too late.

Ask me more if I have not covered all your concerns.

I finished radiation therapy March 1st and will be 75 soon.

It's been eighteen months since I had a lumpectomy and declined aromatase inhibitors and I'm comfortable with that decision. If there were better, less toxic drugs for osteoporosis, which is possibly looming as I have osteopenia, I might have taken the AI despite nasty side effects.

But I looked at the effects of lack of estrogen on bones and cardio system, and was concerned about them. It helped that I had a low OncotypeDX risk of recurrence and other mitigating factors.

I also pondered an article in the New England Journal of Medicine in which an oncologist (the author of the article) declared that women aren't being sufficiently educated about the risks of aromatase inhibitors and stated that "we're giving 49 women these drugs for no good reason than that they might prevent 1 of the 49 suffering a recurrence." He argued that the toxicity of the drugs is being downplayed and patients are not being informed about the actual statistical likelihood of them helping.

It's a very personal decision that each person must make after considering all of the factors that apply. One path is to try them and, absent any debilitating side effects, consider staying on them if the other variables aren't limitating factors. At least one can discontinue them so the decision is not irrevocable (as are radiation and chemo choices).

It caught my eye that you had pain in your feet. Four months after I started anastrozole, I had severe pain in my feet which was initially diagnosed as plantar fasciitis but became more severe and now is diagnosed as tarpal tunnel syndrome which is the same type of inflammation but in the tendons of the feet. Are you still having foot pain? What did your onc say about it? Have you gone to a foot doctor yet?

@callalloo I believe you had DCIS (invasive). And low risk of recurrence. I just want to say that those with invasive ductal or lobular cancer and/or higher Oncotypes, may substantially lower risk of recurrence- by half- by taking aromatase inhibitors.

Did the NEJM article recommend against taking them? Would you mind sharing a link?

I don't have a link for that article but will post it if I come upon it again. I never did find an explanation for why he cited the predicted benefit of aromatase inhibitors at such a low number. But it really depends on the composition of the statistical universe that he was looking at.

As I noted, I had a low OncotypeDX score so already had, again if the OncotypeDX is a valid and powerful model, a single digit risk of recurrence anyway. That's why being well informed about exactly what one is dealing with is so important because the decisions sometimes need to be made on essentially very short notice. But at least with aromatase inhibitors one can at least try them. I contrast that with chemo and radiation decisions which can have permanent consequences and sometimes have to be made before one understands really what they entail. I continue to hope that everyone dealing with the wily cancer foe gets at least second opinions every step of the way.

Agree, and I would add that my uneducated guess is that the side affects of AI's, Tamoxifen would mimic menopause and mine was absolute hell. If you had a rough time with that like me then this therapy would be almost just like it or maybe worse. I chose to turn them down no matter what. I also turned down the Oncotype test as well, simply because I knew I would not take them, making the test a moot point. Had they found cancer in my lymph node(s) I knew I was a 100% I wanted chemo. That was my plan and I was sticking with it. Thankfully they did not and my pathology turned out great. Based on the algorithms my benefit of AI"s was in the 0.4 to 1.4 range over 10 years. My belief is that a lot of woman take them because they are told to and I don't think they are doing themselves any favors by not finding out exactly benefit vs toxicities and quality of life.

You are a very helpful friend of this platform. I thank you! Sharing a recent possible alternative that might prove valuable. I am hopeful that the medical experts will eventually find it appropriate to share these with us who are contemplating the value of side effects. ❤️
https://www.nature.com/articles/s41416-019-0435-4

@frogjumper I understand your fears of a repeat menopause experience! I took letrozole for 5 years and that was not what happened for me. I had some hot flashes at first, but I pretty much still had them anyway (and still do at 72). I am sensitive to meds and had to take brand name, which solved the problem of fillers.

I just want to mention some misunderstandings about the Oncotype, if only for others reading posts on this forum. The Oncotype is used now not only in addition to pathology but, I guess you could say, instead of. By that I mean, a grade one cancer may have a high Oncotype, and 30% of grade 3's (including mine) have low Oncotypes (and don't benefit from chemo). Some patients with 1-3 positive lymph nodes have an Oncotype that says no chemo.

In other words, the genomic testing of the Oncotype (and other tests like Mammaprint) give information that you cannot get any other way.

I do think that if your ER and PR were highly positive, and HER2- (and ki67% low) you could speculate that you are at low risk (your doc can confirm_, but an Oncotype can confirm that with more assurance.
(We can have one at any time, using surgical pathology specimens.)

I do not just do what docs tell me to do. My case was complicated with a lot of contradictory tests, and I already had severe osteoporosis- not osteopenia. I got 4 opinions. I trust the stats from Oncotype that my risk was cut in half with meds and nothing would stop me from taking them. That was my choice and sure there were side effects (some that eased) and probably health effects, but I wanted to do anything I could to avoid a recurrence and was so grateful to take AI's and not have chemo.

I have done bone meds for 18 months (after finishing letrozole) and my bone density is now better than before the aromatase inhibitor, so that has been addressed.

At the 5 year mark, I did a Breast Cancer Index, another genomic test that tells whether extending hormonal therapy is of benefit, and what our risk is. I got a "no" to more meds. If I had gotten a "yes' I would have done two more years, not five.

I am glad your risk is considered low and wish you and everyone reading this the best in these difficult decisions.

@ginip very interesting about improvements in quality of life in the first year or two with 3 month breaks in therapy. I wondered, since my side effects were the worst when I first started, and my bone loss was worse in the first year than the other 4 years, whether intermittent therapy would somehow pose worse effects, particularly on bones. I would love to see this study after 5 years rather than two!

Overall this could be an encouraging option if adopted in practice and the guidelines. Thanks for sharing.