Has anyone out there stage 1 and opted out of taking hormone therapy

CypressCynthia

Balentine said:

Wow
So it sure does run in your family. I am so sorry. Thank you for sharing though about taking and not taking these hormone therapies. It still makes me wonder what happens after you stop taking the tamoxifen or femara? Also did they make sure your sisters were post-menopausal before taking the femara or arimidex? How do you really know? It just seems that the chances of recurrence are still high even if you take these drugs. Did you all have any side effects from the medications?
Lorrie

Hormone therapies
I strongly believe that tamoxifen and arimidex have kept me going. In 1987, when I was first diagnosed, I had a 75% chance of NOT surviving (large tumor, 4 nodes) if I did the usual therapies (if you read the literature in 1987). The new therapy that was added was tamoxifen.

I am not saying that the chemo, radiation and mastectomy didn't help, but I doubt I would have made it this far out without tamoxifen. I was only 33 at the time and took tamoxifen for 7 years because no one knew how long you should take it then.

Fast forward 22 years to 2009 and we learned I had bone mets of the ribs. I was given radiation and prescribed arimidex (I am definitely post-meonpausal) and IV zometa.

Thus far, I am doing great. The arimidex seems to have put me back in remission and I hope to go at least 22 more years!

As far as side effects, tamoxifen killed my sex drive while I was on it. Sometimes it made me a little tired. I did gain some weight but lost it within a year of stopping (maybe 10-15 lbs over 7 years). On the plus side, I felt calmer.

The arimidex hasn't really caused any big problems. I was tired on it at first, but switched to taking it in the evening and now I'm fine. 2 things to really watch on arimidex (femara and aromasin too): 1) decreased bone density can be a problem so I have regular bone density screenings (so far so good) and 2)achiness which can be helped a lot by maintaining normal vitamin d levels. So have your vitamin d level checked. Mine was quite low and I am now on 5000 IU vit D per day (per endocrinologist). My levels have normalized and I feel great!

cathyp

jk1952 said:

Lorrie, no my doctor hasn't
Lorrie, no my doctor hasn't prescribed anything else: most of the other meds have a possibility of blood clots also. And no to the removal of the ovaries. BTW, my recurrence was in 2009, not 2001, so it was nine years before I had another problem which was caught very early.

Joyce

symptoms?
Joyce,
how was your recurrence caught early? with testing or symptoms and then testing?

jk1952

cathyp said:

symptoms?
Joyce,
how was your recurrence caught early? with testing or symptoms and then testing?

Sally,
The blood clots were

Sally,

The blood clots were discovered when I thought I had an infected insect bite on my leg: it was extremely painful, and I could hardly walk on it. I know that they aren't always as painful as mine were, but some symptoms are pain, redness, warmth, or swelling in a leg. I was very fortunate that mine were in the peripheral veins and not the deep veins, so they were less dangerous: more of a sign that I could have bigger problems if I wasn't careful. I know now that I have Factor V Leiden, which greatly increases your chances of clots. I was only on medication for six months, and have been fine since.

I posted something about the importance of gynecological care while on Tamoxifen. It's similar to another posting I did last year. Hope it helps you.

Joyce

jk1952

cathyp said:

symptoms?
Joyce,
how was your recurrence caught early? with testing or symptoms and then testing?

Cathy,
My recurrence was
Cathy,

My recurrence was caught by a very diligent breast surgeon who had been following me for years. She reviewed a mammogram and said that she wasn't happy with the clarity (even though the radiologist had said it was fine) because of my dense breasts and recommended an MRI. The MRI pointed out the suspicious area. She (not my oncologist) was the one that ordered my mammograms and followed up with other testing when necessary. The recurrence was DCIS, so it wasn't invasive, but it ended up being in more than one area of the breast where I had had invasive cancer nine years earlier.

This surgeon went out on disabilty soon after she found the recurrence and then retired, so I will miss her and her care. But, the person that was hired as a replacement seems to have the same wonderful traits.

Joyce

cathyp

jk1952 said:

Cathy,
My recurrence was
Cathy,

My recurrence was caught by a very diligent breast surgeon who had been following me for years. She reviewed a mammogram and said that she wasn't happy with the clarity (even though the radiologist had said it was fine) because of my dense breasts and recommended an MRI. The MRI pointed out the suspicious area. She (not my oncologist) was the one that ordered my mammograms and followed up with other testing when necessary. The recurrence was DCIS, so it wasn't invasive, but it ended up being in more than one area of the breast where I had had invasive cancer nine years earlier.

This surgeon went out on disabilty soon after she found the recurrence and then retired, so I will miss her and her care. But, the person that was hired as a replacement seems to have the same wonderful traits.

Joyce

Thanks Joyce!
How wonderful that she was so dilgent for you.
I had a bilat mastectomy so I'm always trying to gather possible symptoms of a recurrence since I have no followup testing done.

jk1952

cathyp said:

Thanks Joyce!
How wonderful that she was so dilgent for you.
I had a bilat mastectomy so I'm always trying to gather possible symptoms of a recurrence since I have no followup testing done.

Cathy, although I'm not fond

Cathy, although I'm not fond of my oncologist, I do feel that I need her to make sure that I'm checked regularly for a possible recurrence.

My feeling is that the important thing is to have a doctor that you trust following you and requesting the tests they feel are necessary. I have always relied on my breast surgeon to be the first line of defense and the one that ordered my mammograms. Now that I've had a bilateral and DIEP reconstruction, it's been recommended that I have breast MRI's once a year, and I did have my first one, post-surgery, in March. I'm comfortable with this course since the first time the cancer was found from a mammogram and the second time an MRI. I really don't like MRI's, but I feel that they are a necessity.

Joyce

DebbyM

I was stage 1 and clean
I was stage 1 and clean nodes Lorrie, and, I haven't taken any hormone therapy yet. My oncologist recommended tamoxifen, but, I still am not for sure that it is the right thing to do. I also had a lumpectomy with rads.

Hugs, Debby

Balentine

DebbyM said:

I was stage 1 and clean
I was stage 1 and clean nodes Lorrie, and, I haven't taken any hormone therapy yet. My oncologist recommended tamoxifen, but, I still am not for sure that it is the right thing to do. I also had a lumpectomy with rads.

Hugs, Debby

I am glad I am not alone in my thinking
Debby, when was your dx, surgery and chemo and when did you finish rads?
Lorrie

MaryKaye

Opt out of hormone therapy

I'm wondering how you ladies made out; Balentine, DebbyM, JK1952, CathyP, Sally5.....???

I am ER/PR positive, HER2 negative, lumpectomoy .9mm, no node, radiation and Femara is making me sick.  After reading possible side effects, I'm concerned about proceeding.  Grandmother died of Uterin Cancer (Tamoxifen side effect).  Mother, 2 Uncle and Father all had cardiovascular disease (issues of Femara & Armidex).  I have HBP which occured during menopause.  Not over-weight, I eat right and exercise.

I found this post and I wonder how you are doing?

thanks

MaryKaye