No Hormonal Therapy - Roll Call

VR wrote, "I think you pretty much have your mind made up."

Well, the topic of this thread is "No Hormonal Therapy-Roll Call" and I'm here! LOL. That said my script for Tamoxifen is sitting on my desk, not is the trash (and I'm not a hoarder) so I'd say sitting on the fence is still apt.

I had to have emergency surgery last Saturday (abscess on my lumpy breast probably due to RADS) and until that is healed I'm making no decisions. One step at a time is all I can do and OC did not even want my to start on hormonal therapy until the RADS were done-now done, but hardly recovered.

farmer...have you calmed down? I hope you get a second opinion. I wish you well too. I wish making health care decisions was easier for all if us.

VR - I talked to my brother the gynonc and he said if the issues are proven benign with a d&c there is no reason for hyster. So now I guess I'll talk to my gyn about a d&c and hopefully an ooph and then move on to an AI. As always your advice is spot on and well researched. Thanks!

Just checking in to see how everyone is doing.  I was 100% ER/PR+ and did not take Tamoxifen or an AI.  I tried, but couldn't stick with it.  The good news is that in about 3 weeks I'll be 8 years out from my diagnosis.  I was really worried that I wouldn't even make the five-year mark because I didn't take the medications ... so I thought it was pretty cool that I'm an 8-year survivor.

hugs,

Bren

Bren-2007

Congratulations!! The way I look at this is you've already gained 8 years of life. I'm working on making it to the 5 year mark with my hormones in tact. 3.5 down and 1.5 to go. According to my first MO I should have recurred or (DEAD) by now. What a crap shoot. I am willing to bet on myself and my gut instinct Even if I'm a looser.

Bren-2007, Live a good life and many many more good years to come!! For all of us.

xoxMaureen

Dont know if anyone is still following this thread but I have been on Arimidex for almost a year now and although I am not doing cartwheels and I have put on 6 kgs, I dont feel too bad.

It's not as bad as some make out. It doesnt kill sex drive totally and with an anti depressant to take the edge off, I live a normal existence. I am 57 and this is my 4 th go around with BC.

Best wishes.

Hi BayouBabe,

I'm like you, I did not make the decision to quit taking the medications lightly.  I actually agonized over what to do and did volumes of research.  I don't feel guilty about my decision either.  It was the best one for me. 

hugs,

Bren

I already had insommia before bc, had already tried just about everything rx and non rx and tamoxifen totally destroyed my sleep. Doc tried me on Effexor and I felt so ill. I just can't handle anti depressants so I never went back on tamox. Also I have a cateract which currently does not cause issues but my father was blind from cateracts. I started on AI but joint pain started and I am osteopeonic. That along with fatigue, weight gain, low oncotype, age and desire for qol made me decide no more. My MO is understanding. She still sees me for 6 month check up and we will revisit should I get a recurrence. That said it is jist a personal decision and my advice would be to give the hormonals a try as everyone is different

I'm not taking any AIs though I was 100% ER and PR positive. I have done some things to reduce estrogen in my body, including having my ovaries removed and losing weight. Earlier this month marked a year since diagnosis for me. I sure do miss my estrogen--even though I'm not taking AIs, I have had lots of changes post-ovaries that I don't like one bit.

So happy to find this thread! I've been on tamox since May 2014. Just went off it a couple of weeks ago due to horrible cramps. All day, every day. I had a TVUS that showed an enlarged uterus and the beginnings of endometrialosis. I just can't help but feel that it's going to do horrible things to my lady parts if I stay on it. The cramps have gotten worse-how can that not be doing damage?!?

I have an appointment in September with my onc. Want to see how I'm feeling by then and get her opinion. I have a friend, my age and same stats, with the same onc who gave her her blessing to not take tamox. She is doing the fasting thing and clean eating. I started fasting as well and am going to fight to lose more weight...

Hate to even have to make this decision. Hey! Maybe some of my hair will grow back!

Karmenn

I had to stop Tamoxifen after 1.5 years due to developing abnormal bleeding from thickened endometrial lining, which required two d&c's. I had extensive "huge" endometrial polyps. I did not have a history of this prior to Tamoxifen. My oncologist acknowledged it most likely was due to the Tamoxifen. I decided to stop Tamox at that time as my fear of developing endometrial cancer was higher than my fear of bc recurrence. However, if I had had a large bc tumor or positive nodes I may not have made that decision. Each case needs to be examined on an individual basis.

Thanks Kayb, I'm concerned about any of the poisons I may have to put in my body I see oncologist Mo

Hi ladies, I have stopped also. I first was put on femara then exemestane and arimidix. I was also 100%positive estrogen and progestrine. I tried so hard. I am not totally comfortable with my decision but for now it is best for me.

I just got a 10 week reprieve from this decision. Today is my last chemo and the MO was finishing up with ... and I want you to start taking Tamoxifen. I said I'd had two brain aneurysms, I didn't want to be thrown into menopause, and I didn't want to mess around with my hormones. (to start!!!!!) I have an IUD because of LCIS DX, but he was trying to tell me I was already menopausal because I'm 47. Maybe, but at the time I had the IUD put in, I'd never missed a period. In my life. So he agreed that I'd have blood work done to check estrogen levels.

My gut says no to it, to lose finish losing the cancer weight and try natural hormone balancing. I'm worried about my sex life.