TRIPLE POSITIVE GROUP

Since we are talking about Aromotase inhibitors, I am due to begin my switch from Arimidex (5 years) to Tamoxifen. Of course, I read the literature on Tamoxifen and my gynecologist mentioned it too, which shows a side effect can be uterine cancer which scares me a bit since I just had a scare with thickening of my uterine. The biopsy was negative but it's scary. Seeing my oncologist next week to discuss again.

Congrats to those who have finished their 5 years.

Great news, Tresjoli!

hi ladies

I had a question for all you triple positives on tamox vs an AI - I'm done my five of tamox and I know I need to do another 5 of some sort of hormone therapy. I'm back on Ovarian suppression because my periods came back after a 2 year hiatus (yes they are stubborn) -

if feel like everyone who is high risk has moved to an AI - (high risk being defined as needing chemo) I tried 2 types and both were horrible

my question is 1) is your doc comfortable leaving you on tamox if you are pre-menopausal with or without ovarian suppression 2) have you been advised to start OS + AI 2) what was your experience with SE if you moved from tam to an AI 3) ArleneA you said your MO said it was better to do 5 of one 5 of the other - I am wondering if the order matters?

I'm so confused - if I need to switch to and AI I will remove my ovaries at this point since I am obviously no where near menopause even at almost 48 -

Is it ever ok to have these puppies functioning again? even at levels that are not high enough for a period? does it work that way?

rozem I am on OS and tamoxifen. It's only been a year for me...so I can't answer the five year question, but my doc thought tamoxifen was working so why mess with an AI.

My Onc wanted to do OS for 10 years and I was not okay with that. It sounds drastic but I opted for a total hysterectomy. Good thing because I need to be on Paxil (tried Effexor with Tamox and that ended poorly), so I start my AI tomorrow. Overall my risk of recurrence is very low now and no worries about ovarian or uterine or cervical cancer. I'll try for the 10 years--go as long as I can

quick update...I went to see my onc yesterday, she is encouraging me to remove my ovaries since it is her opinion that having too much estrogen is never a good idea for us ER positive ladies...sigh

I am going to get a second opinion

For the woman 5 years out or longer when do you stop seeing your oncology doctor ? I just stopped on my own and had my family doctor do my blood work once a year and breast exam once a year and calls for my once a year mammogram now. I found out that my family doctor does blood work every year and looks for the same thing as my Oncology doctor did. And finding out it's costing me much less then going through the Oncology doc.

I plan to see my onc as long as he will have me. Not because I think I need to but it just feels like a safety net

Heathet - your MO probably wants to wait until after chemo as it may push you in to menopause and therefore removal or shut down is not necessary

SOFT does show about 4% survival difference between Tam + OS vs AI +OS (this being more effective)

my issue is that these studies followed women in their first 5 years after treatment - I'm 5 years out and not sure how these stats apply to me but my MO said it will never be a good idea for me to have estrogen circulating

thanks Mommato. With your family history you absolutely made the right decision!!!

4% is a big deal -the reason I tried an AI but they were horrible. I am going to try again because I know that it's better to be on one plus I would like to finish my next five years on an AI not 10 years in tam

My doc said he younger patients have the most difficult time with this... No kidding!!!!

fightergirl - I would suspect that rads is the culprit...lots of damage/scar tissue messes with the shoulder. The key is to keep breaking down the scar tissue

I tried Femara as well and it totally kicked my butt!!!! I hope that my SE are better second time around

FIVE years ago today, my family physician and long-time friend called and told me I had breast cancer.  It was also a Monday and Columbus Day that year! 

I am so grateful to be alive and thriving.  Was only able to have THREE months of Herceptin because of heart damage, but I am here.

I stand amazed and thankful for all of you that supported me through the years!

Denise-G

Congratulations on your milestone! Now let's Keep them coming year after year.

Me too this week is 5 years for me too:)

Question: anyone do the Reclast infusions (zoledronic acid..bisphosphonates) for bone loss. Just had my 5 year bone density and I now have osteoporosis.My new MO was in a big rush( not pleased) so I don't really understand how bad it is but 2 years ago I was osteopenic and holding my own from the start of treatments.

Risk of jaw necrosis?

Advice?

ElaineThere

I'm older than you so the whole bone density issue has been a big topic with my friends even without the added risk posed by Breast cancer treatments.

By the time it may be an issue for you the protocols will likely be different but the thinking and research suggests that breaking a hip can be a very deadly foreshadowing . I've seen it personally in my family. It's almost inevitably the start of a downhill spiral.

Ashla--Check the AI drugs thread. There is one there Bone Loss--maybe "Anastrole and Bone Loss" or something. I am in my late fifties, and only started treatment last winter, but was found to be osteopenic so zoledronic acid is the plan from the get go, for three years. I am still researching it and have many concerns, both because of the dangers of osteosporosis and because of the dangers of the side effects, which are very rare 1-2% usually is the number, but obviously severe. And given that I seem to get the most rare of rare side effects so far with cancer drugs, antibiotics, etc. I am worried. I hope this helps. As a plus, it is known to help prevent bone mets especially for HER2+ folks, so there is that.