No Hormonal Therapy - Roll Call

Hi: I'm glad I found this thread. 

I started taking tamoxifen in 2008 and just finished in 2013. For most of that time, I cut the pill in half because of the many side effects of the drug: hot flashes, major mood swings, and headaches/ migraines. I did not tell my MO. I was post-menopausal in 2008 and tried the AI's but they were worse., tamoxifen I could barely tolerate. 

12/2013-bc recurrence in the same breast., estrogen positive. But as you can see above, I made it to my five year mark. 

I started taking Femara about 7 weeks ago., and I'm already on a break from the pill. My MO and I will discuss it more when I see her in-person in May. But these are some figures my surgical oncologist gave me when I broke from the Femara:

#1: They caught my cancer very early., stage 1. I had a simple mastectomy (right breast).

#2: So my surgeon said that the cancer is unlikely to recur in the same breast although NOT 0%. A risk of cancer in the opposite breast is 0.5% or less per year. We figured out the numbers and I have a 5% recurrence rate for 10 years., and 10% recurrence for 20 years.

I'm focusing more on getting my body at a healthy weight by healthier eating and walking for exercise. Thanks for listening.

Raebae, So glad to hear that you are at peace with your decision.  

I'm 64. I finished chemo 7/13, had surgery 8/13 (lumpectomy w/ no involvement, hysterectomy). The oncol started me on Tamoxifen after I recovered. I was blasted by hot flashes; tried to hang in there but had a life to live so quit. Then I stared on Arimidex. I didn't have bone aches but what I did have, which no seems to have mentioned, is a mental disorientation that happened while driving, to a dangerous point. I was taking it at night and would wake up feeling weird. The drive to work was short but terrifying. I changed to taking it in the morning which seemed to take care of that problem. But on top of it was real depression that ebbed and flowed and a mental fog. After moving thru the mud of depression for 2 months, I have now stopped the med and feel alive again. My thoughts are clear and I can focus when I drive. 

My doctor is no help. His only answer is that I should take it, w/o any suggestions on mediating the SE. Having the cancer appear in two places, as it did, is considered stage 4. But it's really not medically clear that it was a met, whichever came first, whatever that is worth. 

Again, I have a life to live. Very frustrating. Any ideas?

Olivia I had something similar to what Bren described happen when I took Femara --  not disorientation, but such severe nausea that came on as I was driving.  I was able to get to my destination (a nearby post office, since it was impossible to pull over sooner), but the nausea and overwhelming vertigo actually caused me to pass out as I was standing in line.  The experience was horrible and left me afraid to try another A/I or, following my onc's PA's suggestion (he was out of town when I had the problem) of briefly stopping and restarting the Femara along with an anti-anxiety drug -- a suggestion I found highly insulting -- as if my anxiety was the problem, not the Femara -- so I refused. 

Unfortunately, I don't have an answer for you, but just wanted to share that you are not alone in your severe reaction to an A/I.  What's interesting to me is that now, 5 years after my passing out episode, I am taking Anastrazole (generic Armidex) for bone mets without any issues beyond overly dry skin.   So perhaps one of the other A/I's would work better for you and might be worth a try -- maybe even a half dose to start, and building up if you feel it's safe?    (((Hugs)))  Deanna

I'm 53 and just recently treated for DCIS with a lumpectomy. My risk of recurrence is about 10 to 15 percent, and I'm comfortable with that, so no hormonals for me. The potential gain of a couple of percentage points was not worth the risk of all the potential side effects.  My MO was not pleased but also didn't try to browbeat me into taking them, and I really appreciated that. I agree with other posters that it's a very personal decision and not one that any of us make lightly, but this was the right decision for me.

Ej ... sure hope your biopsy comes back benign.  Keeping everything crossed for you.

hugs,

Bren

Just checked back in after months of not being on any of the threads. How is everyone doing?

labelle...do you know what your mother's tumor's profile was? What was her Stage and Grade? Until we all die from something else, no one can be sure whether or not early diagnosis or perhaps treatment saved their life. And like your mom, no one is immune from dying from cancer despite aggressive therapy.

That said, I sincerely believe there are so many sisters like myself who lived very healthy lifestyles before being diagnosed, so I often wonder what benefit having an even healthier lifestyle post diagnosis adds to our lives. My sister is morbidly obese and has a frightening lifestyle and guess who got breast cancer. She weighs 100 lbs more than me! Imagine how much estrogen is circulating in her body....

I think you come to this journey extremely bewildered because of your mom's experience. I hope you find peace with whatever decision you make. No easy answers here....but please try to keep in mind while making your decision that there are many of us who have included endocrine therapy on our journeys and are doing well.....I wish you well....

All that said - I feel it is worth trying it and if you get warning signs you can stop. I hope that I gained some benefit from the 1.5 years I was on it!

VR, I'm really not bewildered by my mother's experience, but because of it I am a very much aware that what modern medicine has to offer us is somewhat limited with no guarantees. There are some people who seem to think if they just do what the doctor says, all will be well. My mother's diagnosis and death, certainly showed me that is so not true.

There are plenty of people who survive BC without hormone therapy and plenty who die of BC despite hormone therapy. A lot of us were probably cured by our surgeries alone (especially those diagnosed early and w small non-aggressive tumors) but there is no way to tell who surgery alone cured, so we get all the extras, rads and hormones, as added insurance, but they do come with a price (those side effects). For me, personally with my stats/profile, it's a tough call to make. An 85 to 90% chance it will never come back even w/o hormone therapy or 92-95% chance with won't come back if I do hormone therapy. Add in the possible SE and I get a big fat "?"

I do not know all of the specifics of my mother's diagnosis, not sure I was ever told the stage initially, but she had a very large tumor, 5-6 cm, at the time of diagnosis (shrunk by chemo prior to surgery) 4 nodes involved at the time of surgery, ER+ but was told she had a good prognosis initially. Her cancer spread to her bones and liver within 3 years of diagnosis, despite being on tamoxifen. She died within a year of being diagnosed with stage IV. Her death was the result of her liver failing probably not due to the cancer in her liver (small) but to being poisoned by the drugs she was taking and her compromised liver not being able to process the overload.

As for your sister, there are people who smoke and never get lung cancer either. Go figure! But I don't think either of us believe smoking or gaining 100 lbs would be a good idea. Statistically, it would suck, despite the fact some people do seem to get away with it!

In my case, I have not always eaten healthy or exercised regularly, my vitamin D levels were in the toilet for lord knows how long (now fine w supplements), my thyroid was screwed up (now fine w meds) and I had no progesterone when tested a couple months after BC diagnosis, so I think these are changes that can help me in the treatment of and preventing a reccurance of BC.

dance...I've been on an AI now for three years and have had 3 D & Cs in the last year...November 2013, March 2014 and late November 2014. I'm now in a holding pattern...should know in a month or two if they are slowing down. Next procedure will be an ablation if I need it...and then possibly hysterectomy.....

Labelle, without knowing your mom's tumor's profile, I think it would be hard for you or anyone else to say exactly what her prognosis was with treatment. Perhaps her prognosis wasn't as good as what was relayed to her or perhaps what was relayed by her to you and ultimately perceived by you.

I think you pretty much have your mind made up. As I said earlier no one knows who benefits from treatment until we die from something else. I began this journey having almost dying from two previous lifesaving emergency surgeries. Having always lived a healthy lifestyle and having my body betray me too many times, I think I'm less amenable to the idea that I have so much power over my body. If you think you can have more power over your body than what your team of physicians have to offer, then so be it! I wish you well! You have great prognostics and it gives you more choices. Good luck!

I thought my SE with Tamoxifen were bad, but it seems like maybe they were mild compared to what some of you ladies have dealt with? Seriously considering stopping--but this thread has included some great information/food for thought. Going to pray/reflect/discuss with doctor and family...

VR - I'm having the bleeding again (two months so far). I haven't had a d&c but in the two years I've been on T I've had 3 tvu, biopsies, hysteroscopy, doc said next stop is d&c. Talked to nurse yesterday and she said it is out patient with general anesthesia. I'm wondering why I wouldn't move onto full hyster. Don't want to be back here in a year. What is your reasoning for keeping things intact?

farmer...hysterectomy is among the most performed surgeries and in far too many cases, it is over performed. It is a major surgery that comes with greater risks than a D & C. There is also some evidence that women who undergo hysterectomies have slightly shorter lifespans. With all that being said, there are many women who undergo hysterectomies and are pleased that they have had the surgery. Recall, I have undergone two lifesaving emergency operations and numerous other orthopedic procedures in addition to my D & Cs. Having surgery is no picnic and IMHO should be medically necessary. While my quality of life has certainly been diminished from all of my procedures, I would still prefer to keep as many body parts as possible than have to worry about possible side effects of a hysterectomy farther down the road. I worry about abdominal scarring and urine incontinence.

I have the same feelings as VR about hysterectomy. I also have concerns about possible sexual dysfunction. Again, this doesn't happen to everyone, but I don't want to risk it if not truly medically necessary.