Anyone NOT elect to do Hormone Therapy?

I am post-menopausal, and 100% ER & PR+. My MO gave me the option of taking Tamoxifen or not (she said that would be the most effective RX for my situation so no other meds were discussed). I decided to give it a try-I do not want to repeat these last 4 months. I want as much ammunition in my arsenal as I can have. I'm on week 6 and no SE so far.

I was not offered chemo, Arimidex for 4,5 years, now just started Tamoxifen, no side effects as yet taken it for 10 days

Side effects from Arimidex were difficult, hoping Tamoxifen will be easier, giving it my best shot.....

"I hope that each of us ladies makes the right choices so that we never have to deal with this again."

Amen

Cancer sucks! I am sick of thinking about it and living with

I had my third Lupron injection this month and like clock work the side effects are kicking my ass.

(Not joking here)

I went through three surgeries hardly missing a beat, shit I flew through dense dose chemo dancing with the red devil and kicked her ass all with a smile on my face. I hardly missed work, didn't get down, was pretty up beat and smily even when my head was buried in the toilet.

But this "preventative treatment" is kicking my ass. Sick omg! Let the roller coaster begin. Here's a little taste of the side effects: week one- flu/cold symptoms, dry eyes, swollen fingers and belly (like stretch pants needed so swollen), coughing a dry hacking cough that keeps me up and just about cracks my ribs, Week two- hip and teeth pain, I've never had a cavity but holy crap the pain is unreal! I feel like every tooth in my head is throbbing. The hot flashes, for the love of God! I am a sweaty smelly gross wet mess, hot cold hot cold. Lovely insomnia (hello 4am). The mood swings- rage anger, sniffly sadness, and finally a deep depression settles in, it's a deep dark, lonely, scary place, for about one week. Then by the middle of week three.... Poof all SE fade and for one week I get a glimmer of the old Rain.

Oh and My flipping hair is falling out again! How's that for a cherry on top.

Ahhhhhh!!!!

So this the aftermath of cancer. Some people breeze thru treatment only to get beat down in the preventative treatment. Maybe I am just a whiner, but I am pretty sure I've got some tuff skin here, but enough is enough.

There is no rhyme or reason why some people have a harder time then others the hormone inhibitors?

I am tired flat out worn out i don't want to burden my friends and family with talking about cancer yet again (I can hear myself as the teacher from peanuts "wah wah wah wah")

So is the trade off of these drugs worth it? The Dr assures me as my body adjusts to the hormone blockers things will get better.

But,I don't think I will continue with the treatment, I am leaning towards a final surgery to get my ovaries removed vs being on drugs.

Well till then I am riding the crazy train.

Woot woot.

raindeer, there is a thread you might want to take a look at. It's called Why was I stronger DURING treatment than I a now? There are many supportive ladies on that thread that have been exactly where you are. Unfortunately the whole cancer thing is a progression until we get to the last stages of treatment. I think there are many factors, but it seems that for some of us who are younger, being thrown into menopause with meds or chemo or surgery is just one step too much. Menopause is suppose to be a long drawn out thing where we get some little hot flashes and then perhaps some poor sleep, etc. After cancer, no one tells us that the abrupt menopause will possibly take us down.

Your stats hint toward you being younger (under 50) and your body and mind have said enough.

What a great thread!  I have to admit, after stewing for 2 weeks, waiting for the oncotype score to come back and envisioning chemo and worrying about everything that went along with that - that day I was sitting in the MO's office on my birthday in November and he told me oncotype 17 and no chemo, I would have swallowed my shoe if he asked me to.  He prescribed tamoxifen and quite frankly, I was ecstatic!  I didn't even want to know what the potential SEs were.  So, I've been taking it for 3 months.  At first, nothing except for nuclear melt-down hot flashes, but those I can deal with.  The past month or so, I developed something along the lines of a yeast infection that was horrible and would not go away!  I rode it out for a few weeks and under the advice of a BC friend, starting eating yogurt every day (which I hate) and stopped using soap in the nether regions.  I bought some feminine wash and that's all I use and frankly, things have gotten much better.  I never once considered not taking the tamoxifen.  Probably because I didn't have chemo, I felt like tamox was my friend in battle and I would deal with the SEs if they came up.  Well, they are there but I'm trying to live with them.  I do worry about cysts, and uterine lining and all of that and need to follow up with those questions...like, who's monitoring that?  Just like everything else with BC, it's one crappy choice, followed by another crappy choice and we don't know which are the right ones.  I don't think we need to defend our decisions to anyone, but ourselves.  These are not easy choices to make and of course we all want to live long, happy lives.  I hope you all can find peace in whatever path you take.

Raindeer: Ok I am fairly new to all of this stuff but wouldn't taking your ovaries out possibly have the same effect as the blockers? You are way further along than I am so just ignore that question if I am completely off base here.

Another thing I don't know is how many of these hormone blocker options are out there. Is there maybe another drug that might be easier to handle? Have you considered another opinion from another doctor. Again, I am just starting all of this so I don't know if these questions are even worth asking.

But I do know that about 10 people recommended I go to a doctor here locally and I went to him and didn't really agree with his approach and got a second opinion that made him look a little like an idiot, quite honestly.

Anyway, I wish you the best.

After going through 6 harsh rounds of chemo, a year of herceptin plus a bmx I felt like I fired all the "big guns" at this cancer and hormone therapy was just a little pea-shooter for some added protection. But I'm learning I was wrong,  a little pill can play a much more significant roll in staying cancer free. 

If you scan the stage lV threads you will see that many women with metastatic disease are being stabilized or even having their tumors shrink away with hormone therapy alone.

For the HER2+ gals like me, yes herceptin and perjeta are amazing drugs, but if you read the stories of women doing neo-adjunctive chemo, many who are ER+ do not get a complete response, some of the tumor still remains, the ER part.  So while we endured chemo to try to rid our bodies of those nasty HER2 cells lurking around, we need to throw something at the ER+ too.

So I now consider hormone therapy another "big gun" in my arsenal of weapons against cancer's return. 

Luckily there are choices, so while one form of hormone  therapy may not suit your body, hopefully another will. Just like with chemo, for some, the side effects may outweigh the benefits and therapy may need to be discontinued and that is understandable. But many tolerate it well, so don't brush it off without considering it's power and importance.

I will throw in my info.

Premeno, happily married, dx at age 51 with HER2+++, ER+/PR+, 1.9 cm IDC in 2002 (back when AI's were still only given to those with mets and adjuvant tamoxifen was for all HR+).

Did chemo followed by rads, and got back to enjoying life in all aspects. Started tamoxifen and 2 weeks later my gender disappeared permanently, along with becoming postmenopausal. Took tamo at full dose for 1 year, then at half-dose for 3/4 year, then quit it.

My guess is that I may be one of those for whom tamoxifen is highly effective. My mammo after chemo and rads continued to show very dense breasts, but at 3 months after starting tamoxifen my mammo showed all breast density had disappeared. It has stayed that way. My guess is that continuing to take it longer would have been superfluous for me, along with adding the usual tamoxifen hazards and any SEs during that extended time.

Having had a HR+ tumor and now being 14 years out from tx with no recurrence, I am considered to be at high risk for late recurrence. I use organic diet, weight management, and balancing omega-3's and 6's for recurrence prevention, along with annual MRI recommended by my BS alternating with annual mammo for early detection.

I suggest you google "Karolinska Institute" (a reputable research entity), "tamoxifen" and "breast density" to learn about their study regarding breast density and tamoxifen, which provides a possible way to gauge whether tamoxifen is having useful effects or is a waste of putting up with SE's (for those who just happen not to get benefit from tamoxifen).

Mine is just one added anecdote. Best wishes to you all.

Also from 2013:

http://breast-cancer-research.com/content/15/5/R93

Of course, other factors might also be involved. It is just one effort in trying to narrow down on what persons stand to benefit from taking the drug, based on changes in breast density.

Oncotype test is simply to determine if chemo will reduce your chances of recurrence when combined with anti-hormone therapy. Many women take the test, especially younger women, to know if chemo is worth it. If the Oncotype test is a low number, then sometimes it's best not to put your body through such harsh treatment. Yes, it is done after surgery when the final pathology report is in. When a tumor's stats point toward chemo, the test can be helpful in decision making.

The information on the Oncotype score assumes the person is ON hormone therapy. Looking at the graphs, they do not give information WITHOUT tamoxifen. Rather the decision is for tamoxifen alone vs. tamoxifen+chemo. (At least that's what I've got). So, the score assumes you're doing hormone therapy...

Right now, in my third bottle of tamoxifen, I am having trouble separating tam se's from the se's of age. I was complaining yesterday about weight gain and lack of energy but I was doing that before I was ever diagnosed.

Allicat--My Oncotype test was ordered 3 weeks after surgery, when I saw an MO, which still would have given me plenty of time to start hormonal therapy if I had been interested in it. The hospital lab just forwards your frozen tissue that they keep in their "freezer files" for subsequent study if needed. The MO knew that I was really opposed to starting hormonal therapy and said she would order the Oncotype test (a) to verify that I wouldn't need chemo (she was really sure I wouldn't) and (b) to give me a better idea of my recurrence odds. So you do want to ask the MO to order the test.

Professor50, and Allicat--The Oncotype test results do predict recurrence odds based on using tamoxifen, true. But according to my MO, they can also be used to predict recurrence without it. The rule of thumb for recurrence prediction if not on tamoxifen, the MO said, is to about double the percentage, which for instance elevated my 8% chance of recurrence with it to about 15-16% without it,

As I read a lot about BC and I have read a lot on here, it seems to me that there are quite a few doctors who put aside quality of life issues with these treatments. I guess one can only decide for themselves what therapies to try. But Bratscher, I don't think you should feel like a bad kid.

Bratscher, I did decline tamoxifen after my original dx back in 2000. After all the reading I did I was not comfortable with being thrown into immediate menopause and all the other SE's. I was 41 at the time with 2 teenagers. Even though I did have a recurrence, all the MO's that looked at my case said it would not have made a difference if I would have taken the tamoxifen. The ladies on here are right, it is your choice. The best we can do is make the most informed decision we can weighing all the risks and benefits. I think the key is to not look back and second guess your decision. Quality of life is a biggie, and one of the reasons I chose to quit the AI's after 15 months. The depression and anxiety were too much for me. After a month off the drugs, I was back to my normal self and able to enjoy life again.