Skipping Hormone Therapy

KHD5459

Hi there,

I have been concerned about me having to be off of the hormone therapy for awhile. I have had a high cholesterol problem with chest pains and my onco said to "hold" the medicine until I get checked out. So...I had some heart tests done and I appear to have a blockage to where a part of my heart isn't getting enough blood supply. Also, I have irregular heartbeats in both my upper and lower chambers of my heart. I will find out tomorrow about the procedures they have planned. However, I'm concerned as I have been off of the anastrazole for around 2 months altogether. My onco score was a 16, early stage, no lymph node involvement. No radiation or chemo. Had a double mastectomy. Are all hormone blockers the same? I did try letrozole and my entire chest hurt. Any suggestions? Concerned about my recurrence rate?

Salamandra

Hey KHD,

The hormone therapy is effective medicine, and it stays in your system for a while even after you stop. It makes sense that you're concerned, but it sounds like your doc thinks that the heart issues should take precedence for now. If you are not feeling confident in your doc, could you seek a second opinion? Or else, if you do like your doc, ask them or their nurse for a follow up conversation where they reassure you about the impact of temporarily stopping.

All the hormone blockers are not exactly the same, especially if you add tamoxifen as an option, but they all have side effect profiles and risks. There are definitely women who are told to temporarily or permanently come off of them (or never go on) because of co-morbidities. Including planned pregnancy, which increases breast cancer risk all on its own. There is always a bigger picture, and it's good when doctors can see it.

I hope you get good news on the heart front! That must be scary in its own right.

dtad

Hi there. So sorry you are dealing with cardiac issues as well as BC. You don't have your stats made public so its a little hard to answer your question accurately. However from you said IMO its much more important to deal with your cardiac issues at this point. It sounds like you won't be off anti hormone therapy much longer. Good luck and keep us posted.

bluepearl

Your irregular heartbeats could be premature beats and really nothing to worry about but still need to be checked. The blockage to your heart...is it about blood supply or electrical conduction? The AIs tend to have more effects on the heart than tamoxifen does. I have had atrial fibrillation and tamoxifen hasn't caused any for 8 years and if it had an effect on the heart, I think it would have. You need to be taking an anti cholesterol med asap. and probably a blood thinner (not aspirin,,,it doesn't work so well on women). If you go on tamoxifen the blood thinner will also alleviate the side effect of blood clots as well. Recurrence rates are somewhat higher in HR+ breast cancers from 6-10 years so it would be optimal to be taking the hormone blockers for as long as possible and by the looks of it, give tamoxifen a try if your doctor recommends any. I had no side effects worth mentioning either. AIs gave me terrible pain. That said, my friend had breast cancer in 2006 and had only surgery (wouldn't recommend that) and is still doing well13 years later. If you are overweight, try to lose that. My challenge right now.

kod

Hi all,

Struggling here about whether to go back on aromatase inhibitors. I have been off for 3 weeks and have an appointment on Monday to discuss this decision with my oncologist. I started on Letrozole in February, 2018. Tolerated it well for about 7 month)s until numbness in fingers woke me every night. Had testing and, sure enough, I had carpal tunnel syndrome. Had the surgery and that problem went away. Meanwhile the joint aches got worse. In the mornings when I got out of bed, I felt like I was 90 years old! (I'm an active tennis-playing 66 yo!) By April I was miserable and the PA switched me to Exemestane. Five weeks later, I felt no difference. So I took myself off to see what I was left with. Joint-wise, I think I am back where I was before the AI's. I just don't think I can go back on them. Going into BC, I already had osteoarthritis in both knees, but that was all manageable with occasional Alleve or Motrin. On the AI's, it felt like I needed two knee replacements! Off of it I don't feel like that. My argument for staying off of it is 'quality of life' and I was Stage 1A, no nodes, Tumor Grade 1 and I am on twice a year Zometa infusions for osteopenia which also has some properties that help with reoccurrence. Any ideas on the subject would be welcome!

edwards750

kod - tough call. QOL is important. I took Tamoxifen for 5 years and had joint pain and at times lack of concentration. Both manageable. I know women like you who have suffered debilitating side effects and have just stopped taking them. One in particular tried them all and every one caused excruciating side effects so she stopped taking them too. She is a RN at St. Jude and is 10+ years out. She also had a double MX.

Doctors don’t have to deal with constant pain from these drugs so they can’t possibly relate to what women are experiencing. It’s a crap shoot but one that should ultimately decided by the patient. Doctors can advise as they should but it’s not their bodies or their lives at stake.

Good luck!

Diane

Meow13

I was shocked to find out my risk reduction taking AI was 1% possibly 2%. If I could go back I think I would skip it.

I was already exercising 1hr treadmill daily and every other day swimming a mile in 45 minutes. I understand that with a proper diet, no alcohol was already reducing my risk more than that. Although I was doing that when I was diagnosed so pyschologically I felt the need for further risk reduction.

Blame the victims, you must have done some wrong philosophy. Need to get past that.