Scaredy cat re: hormone blockers??

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Trying2staypositive
Trying2staypositive Member Posts: 119
edited July 2019 in Hormonal Therapy - Before, During, and After

I have ILC and waiting for bmx-looks like no spread to nodes on mri but cant be sure till surgery of course. On biopsy my Er and pr + in the mid to high 90s. . And ok I know this is irrational-but I am afraid of hormone blockers. Truly. My grandmother w bc died of a stroke taking them and I have a family history of blood clots. A personal one too but there was a cause. So Tamoxifen scares me. (Im premenopausal). I have a non blood related aunt on it with no issues. I just get alot of rare side effects on drugs so am terrified. My mom took aromasin for years and struggled on it. Lack of estrogen really took its toll on her. I am worried when all is said and done I will be more afraid of the treatment not the cancer. Am I crazy for saying this? Not like I can opt out I have a son, but if I didnt I am not so sure....

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  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited July 2019

    You are not crazy at all, I totally get where you are coming from! I have posted about my fear of hormone blockers before, because I have other health issues going on that are affected by them. I strongly considered refusing them, but have decided to give them a try. Before coming to that decision I went back and forth over and over again, until I just couldn't think about it anymore! Finally gave in to the opinion of my MO. I am postmenopausal as of last month, so am taking anastrozole. I was afraid of the Tamoxifen because of a strong family history of heart issues, but I'm afraid of the anastrozole too because of the bone loss issue. Unfortunately, we don't really have good options. Time will tell, but I am prepared to go off of the anastrozole if the cost proves too high. So far, I seem to be adjusting ok.

    All I can say is, wait until you get all of your information. If you end up being low recurrence risk (as many of us with ILC are), you might find that the health risks of taking a hormone blockers are not worth the reduction in recurrence risk that they offer. There are plenty of women who opt out. There are also plenty of women who take hormone blockers with little to no problems.

    Wishing you the best possible outcome. You are not alone in your feelings.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2019

    Talk to your oncologist and find out the benefit and weigh the potential risks. The treatment is your choice.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2019
    You might also ask your doctor about taking a baby aspirin to help prevent clots along with the Tamoxifen.
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  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited July 2019

    Good advice from all you ladies. Good point Meow-I feel sort of pressured to do alot of treatment I guess because I do have a young son and we are very close. It kinda sucks to feel like maybe I need to go more extreme.

    Perigrenela-Maybe a blood thinner would be enough if I wanted to try tamoxifen? Good point! I do have heart issues but mine are arrhythmia (svt) and high bp.

    Whatjusthappened-dont recurrence rates assume use of hormone blockers? Just wondering....?

    My mom had bc and she said aromatase inhibitors are very expensive. Yikes. She took aromasin and just went off after 12 yrs. (She never took tamoxifen.)

    I about fainted when I saw my out of network insurance deductible for my plastic surgeon. I dont think I am ready for no reconstruction (Im a DDD so would be quite different). But wow, this cancer is going to bankrupt me looks like. Never mind it can cause death. Ugh. I swear I am trying to be positive but ugh 1,000 times....I know its only money but we have other educational expenses for my son that are unavoidable due to severe adhd.Sigh.....

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2019

    I have a history of clots. Was on Arimidex for 4 years, tamoxifen for about 7 months. Was on Coumadin prior to, during, and still am on it. No problems with clots.

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  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited July 2019

    Recurrence risk does indeed assume use of anti-hormonals, but you can kinda-sorta extrapolate your risk without them and talk to your oncologist about it. This link was shared with me when I had a similar question.

    https://community.breastcancer.org/forum/78/topics...


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  • SimoneRC
    SimoneRC Member Posts: 419
    edited July 2019

    Hi Trying2staypositive!

    Sorry you have found yourself here. But, the people on this sight are super nice, helpful and supportive! At least there's that:-)

    My generic Anastrozole costs me $3.00 per month. Would probably be even less if I filled a 90 day supply. Perhaps prices have come down with generics since your Mom took AI's.

    If you are near a major academic cancer center that is in network, you may find a really great reconstructive plastic surgeon there. Something to think about. My PS is at a major academic NCI hospital and literally travels the world teaching other plastic surgeons, Private and academic, how to perform pre pectoral reconstruction. Out of pocket certainly stinks but it stinks less if you can stay in network!

    Good luck and keep us posted

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  • WC3
    WC3 Member Posts: 1,540
    edited July 2019

    I've been on Tamoxifen for about 8 months. There is a clotting disorder in my family but I was tested for it and don't have it. Initially I had some emotional lability when I first started the Tamoxifen, and cramping. I'm back to myself much more now but I have hot flashes and it's summer. My uterine lining is also thickened but the doctor says it's normal on the Tamoxifen and not a concern unless I start bleeding. My bones are too thin to do AIs without something like Prolia.

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