Topic: Anyone decline hormonal therapy?

Nov 9, 2011 03:46 PM GAnne49 wrote:

Hi there,

I've been following (and posting) on the Arimidex SE thread for some time - at least one familiar name on here.  Anyway, I'm glad I stumbled upon this group.

I had a lumpectomy in April 2010, declined all lymph node surgery, chemo and radiation, took Arimidex for 6 months.  After about 3 months I told my oncdoc I was not very happy with the meds but agreed to keep taking it. After about 5 months I told him I was quitting as soon as I had used the last of the prescription I had on hand.  I took the last pill January 1st 2011 and have been off it now for about 10 months.  I passed my mammo in January and my 18 month (since diagnosis) in August.  I go for my 21 month checkup next week.

On my first visit to the oncdoc, he told me based on the pathology I had a 60% or better chance that I was cured with the surgery.  Never the less, it's scary.  Then I started to read about chemo and radiation, and that was even scarier, especially the chemo, so I agreed to the hormone therapy, partly because the doc said I'd get more benefit from that than the chemo and partly because it seemed the lesser of the three evils.

I too live on my own, cut my grass and blow my snow (a fair bit of it here) and just couldn't see how I was going to manage between the pain, insomnia, dry eyes and short temper.  I decided it wasn't worth it to try to prevent something that might never happen, and might happen anyway even if I took/did everything they offered.

So, after 6 months on and 10 months off, I still have some increased pain over the pre-Arimidex period, but it's tolerable.  I'm taking vitamins C, E, and lots of D and Aspirin.  I'm also trying to distance myself from stress that I can't control - mostly other people I care about but who are screwing up their lives (in my humble opinion anyway).  Overall I feel pretty good, and pretty good about my decisions, but it's still a bit scary.  So far so good.

Nov 9, 2011 08:30 PM cycle-path wrote:

"I am not worried about the ones that might be tolerated. I am worried about the ones that will kill me."

I'm not on Tamox and my MO is ok with that but she'd also be ok with me taking it. However, that was my precise opinion -- I was more worried about the SEs that were either permanent or life-threatening.

When I told this to my MO she said that while stroke, blood clots, cataracts, etc are definite SEs of Tamox, they are Very, Very rare ones. I forget the numbers she gave me but it was something like one in 1/4 million women.

My other issue is this: I had only DCIS and of course DCIS itself isn't life-threatening. I'm not terribly concerned about a recurrance because to me DCIS is more of a nuisance than it is frightening in and of itself.

I suggest you go to this page: community.breastcancer.org/for...page=1#idx_12 and read the rather long post by Beesie. It explains a lot of pros and cons of Tamoxifen.

Nov 10, 2011 12:25 AM gentianviolet wrote:

I, too, struggled with whether or not to take hormonals.  They started me on Arimidex and by the time six months rolled around I had to give it up.  Pain in my hips and knees and a tendinitis in my right ankle that stopped me from playing tennis, which I love.  Next was Tamoxifen and I was willing (or should I say, too afraid to not try it), at 20 mg/day.  Well, that didn't work either........still had the hip and knee pain as well as the tendinitis.  So I cut it in half to 10 mg/day after reading about low dose tamoxifen studies on the web.  I am not advocating that anyone else do this however in the back of my mind is the experience I had with the estrogen patch.  Thirty years ago I asked for the lowest dose available and the GYN kept telling me that it was not going to do any good (hot flashes) and I should be taking a higher dose. By the way, it certainly did help with the hot flashes.   So now years later they are telling everyone that the doses were way too high and the dose I took is now most acceptable.  I wonder if this could also be possible with the hormonals?  As I said before, I am not advocating anyone else try taking a reduced dose.......but my onc did say, "Well, half a dose is better than none."  It is such a crap shoot, good luck to us all.

Nov 10, 2011 08:38 AM painterly wrote:

Just found this thread....those of you who are taking only 1/2 pill of tamox......do you have se's from half a dose?

Nov 10, 2011 08:23 PM painterly wrote:

Barbara,

I was on Arimidex for a little over 6 months, then aromasin for one day. Onc took me off due to dangerous se's. That ended about 1 1/2 years ago. I had my visit last week and my kind onc. wants me to try tamox for one month and to feel free to go off it if I have problems. Trouble is, I am heading in a day or two to Fla. for 6 months where I will for sure have those horrible hot flashes; and those crappy hot flashes and Florida just don't go together if you know what I mean. The other thing is I don't have a doc. down there, if anything goes wrong. And finally, he said I am supposed to have a uterine scan or something, but it wasn't clear if I get it before I start on tammy or later. So all this is at the last minute which is hard to deal with. I just had my mammo and all is super duper in that area.

I tried grape seed extract a year ago and stopped and I couldn't remember why I stopped. I still have some in the cupboard, so after my onc. visit I started popping those. By day 5, I remembered why I stopped.!!!! OMG the pain down my leg was horrendous. I have a 24 hour drive to Fla from Montreal here, and I don't look forward to the drive now, with this pain which although has subsided considerably is still lingering. Anyway, now I remember why I stopped.

Anyway, 6 months can't hurt. I am 67 so no spring chicken!! The last few months I have been feeling really good, so much so, that I am planning to extend my garden when I come back in the spring, and previously could only yawn whenever I looked at the garden due to no energy for that kind of work. So I hate to give my new found energy up for tammy. Another thing, I paint and plan to go plein air painting around the beaches in Sarasota and haven't been able to do that since treatment as I was too tired for such a contemplation. (I paint standing up and treatments took away my ability to stand for any period of time).

Anyway, (another anyway) I see some of you take 1/2 a dose of tamox, so that is good news espec. hearing that a smaller dose is now available.

Thanks ladies.

Nov 10, 2011 08:53 PM Kaara wrote:

painterly:  Conventional prescription medicines are mass produced...one size fits all.  Ideally a person's meds should be targeted to their needs.  I got this when I went to a private physician last year for bioidentical hormones.  The pharmacy compounds them exactly to my needs, and they seem to work so much better for me.

I also took HRT, but it was the synthetic estrogen only which was supposedly not as dangerous as the one containing estrogen and progestrone.  I had a complete hysterectomy and my doctor said since I had no ovaries I had no need for progestrone.  I took birth control pills for twenty years before that, so I'm probably lucky that it took this long for something to show up.  I'm almost 72.

This is  why I don't just accept a doctor's explanation for what kind of medication I should be taking...I do my own research and if I don't feel comfortable, I won't take it.  You have to trust your intuition and you body on some of these things.  Doctors aren't God. 

Nov 11, 2011 12:28 AM, edited Nov 11, 2011 12:29 AM by cycle-path

CLC, how old are you? There was a study that came out recently that said that Tamox didn't do a whole lot for women over 60. I'm 59.

Someone was telling me that her MO didn't push Tamox, though the BS thought she should take it. She asked the MO why his opinion was different, and he said that the BS didn't have to deal with the complaints of patients taking it! 

Nov 11, 2011 06:44 AM, edited Nov 11, 2011 06:53 AM by CLC

I am only 44. 

But, I am not sure the issue changes a whole lot anyway.  It is my understanding that the studies show that tx has only limited effectiveness in reducing bc risk after the first 5-10 years.

I really think the key here is that 60% reduction isn't the same for everyone.  I am starting with a 28% lifetime risk.  Cutting that 60% brings it down to 11.2% lifetime risk.  While that is a significant drop, it still leaves me watching very carefully and living with significant risk.  I am not sure that change is enough to warrant risking all the dangerous se's. 

Whenever I think this, I also want to add that the people really making the argument that the se's are worth it are the same people who stand to make a whole lot of money off of my taking it, and none off of my declining.  That really doesn't increase my confidence in the drug.

I want to tip my hat to all of you posting here who have cut your dose in half.  That is a really smart thing and also really strong...to go against doctor's orders or to persuade doctors to change their orders.  Never an easy path.

Tatina...I am so sorry for your sister's troubles with the tx. 

Nov 11, 2011 02:30 PM wenweb wrote:

Even the 20mg Tamoxifen that has scoring didn't break evenly.  

Nov 11, 2011 03:15 PM painterly wrote:

It's called a "pill cutter" or so I believe, but I couldn't find one. I had no trouble cutting arimidex but aromasin shattered slightly when I cut that one. With arimidex I used a sharp knife and made a swift chop and I didn't waste any. My onc. didn't mind me cutting them and said what one gal said above "half is better than none" for him anyway at the time, until my health declined. 

Nov 16, 2011 04:44 AM, edited Nov 16, 2011 04:47 AM by Miles2Go

Me ~ no anti-hormonal therapy post surgery.

Thanks to everyone who posted.

I just stumbled across this thread as I was diagnosed late September. 

Stopped HRT the day my oncologist looked at me (after x-ray & ultrasound that am) and said quite deliberately "I think you have an 89% chance of Stage 1 breast cancer."

I stayed on HRT for so long, because I looked good w/great bones; however, I didn't know the correlation between HRT/Age & breast cancer.  A new internist at UCH questioned my HRT the week before my annual breast x-ray~first time an internist questioned.  Went to UCH because 5 internists have left practice (I fired one) for one reason or another since I moved to Denver in 1997.

Biopsy the next day, lumpectomy followed ~ right along with hot flashes for the first time in my life the following couple of weeks, then completely abated.

Sore joints! for the first time in my life.  I practically creak!   Ginko & Glusomine-Chrondrotin here I come. 

Skipping adjuvant therapy, radiation included.  Looking 60-something at 72, employed with a very active life, I'm choosing quality of life over side effects, known and unknown.  My choice.

Hugs to everyone, Colorado Morning Glory

Nov 16, 2011 05:41 PM VJSL8 wrote:

I was on Arimidex for 1 year before the side effects became too much for me and I stopped using it. You might want to try it and hopefully you are one of the lucky ones that doesn't develop some of the severe side effects. You can always discontinue it. 

Nov 16, 2011 11:44 PM oliviafinnegan wrote:

I ruled out Tomox immediately when offered the option. In my case I'm sure it is overkill and I am careful about taking anything that affects my entire body. Doctors have to present you with all possible options but I don't think that means all of them are particularly applicable to an individual's situation. 

Nov 19, 2011 06:00 PM wenweb wrote:

Mar 25, 2012 07:32 PM DFarro wrote:

Feerless One -  I am wondering the same thing.  I had bilateral masectomy and my ovaries removed - I am 46 small and thin - 100lbs....How much estrogen can I possible be making at this point???  I don't know that there is a study out there of Arimidex on women without ovaries.  How much better can it be than Tamoxifen.  Is it worth the bone loss??  That's where I am.  I had my bone scan.  It showed osteopina.  My onc still says do the Arimidex and then she wants to give me shots of Prolia for the bone loss bkz she said I will have osteoperosis in 5 years on the Arimidex.  But Prolia has side effects too.  I can't see taking a drug that is going to give me osteoperosis.  For now I'm staying on Tamoxifen.

It is good to hear others having some of the same thoughts.