Planning to forgo tamoxifen?

Apple2020

Hi Tasothi and All,

I will be taking my 10 taxol/herception treatment this coming Tuesday. I was diagnosed early June, left breast, neg sentinel node, stage 1 ER,PR and her+. at the age of 63. I have been down this road 13 years ago involving my right breast with no her+. The treatment then was more difficult than what I'm going through now, however I do agree that the hormone therapy was the worst for me, I felt it really ruined my quality of life. I also, after all the treatment, have osteoporosis, and I feel it took me at least 5 years to get back to feeling normal, sexually, I only took tamoxifen for 4 years.

First, I must mention that I am grateful that my old breast cancer has nothing to do with the new cancer, so in that respect I'm good. However this time around I'm doing a lot more research regarding options. I read new studies that there is no difference in taking Herception 6 months vs 1 year. My doctor told me that if I show signs of neuropathy then I can probably stop the taxol at 10 times vs the 12. If that's the case why go to 12? How long does it take for a confirmed new study to be adopted by cancer authorities? I realize that everything is so individual and of course everyone has to wait for the authorities to say yes or no. Could that be tomorrow or 1 - 2 months from now? Or do we have to wait 10 years.

I think this time around I will be making some of my own choices. I do want to live of course and love my life, but I want more options and information.

Also, how much of this is related to the expense of these drugs...just saying

I think also, I would like to learn more about homeopathic solutions especially for the hormone therapy. If anyone has any information or sites to go to regarding homeopathic literature I'm interested.

One more note, I do realize that I'm not a doctor and I do have a great respect for most of them. However, I realize that they are not able to suggest less treatments, other than what their group supports at the moment. I like my doctor and the nurses have been amazing and I know I will beat this thing.

Thanks for listening to my thoughts, and wishing everyone the best! Stay positive!

App

tasothi

Thanks everyone. Sorry to get grumpy but Ive heard more than once the "why assume" when I have actual medical reasons for my specific concerns about vaginal symptoms. None of my concerns stem from reading posts on forums either, another assumption that really got annoying to keep being told. I am far from new to medical forums unfortunately, and so Im very discerning in how I go about sorting through information and making decisions.

When you read actual articles about the abysmal state of what medicine has come up with to deal with teh entire rang of sexual side effects, you will sadly find the establishment considers these acceptable side affects and patients are routinely discouraged from talking to doctors about this problem. Its an underreported issue and its an under addressed issue. PEOPLE DONT TALK ABOUT IN ON FORUMS EITHER. Its a real problem.

Sexuality is often treated like its some kind of bonus you should be willing to give up in exchange for staying alive. Ive actually had people say "your sex life is the last thing you should be worried about Im serious. Would anyone say "Blindness is the last thing you should be worried about". Probably not. What if I a visual artist? Is being able to see more of a necessity for me than anyone else? No. But you see what I mean? None of these are choices.

Finally, i would be best to stop assuming that all side effects go away with stopping these drugs. Its simply not true- SADLY. Vaginal atrophy can be irreversible.

Well you're not gonna believe what kinda foolishness just happened to me. So here I am just went through the bmx with flying colors, my mood is good, meds are finally working and this morning I wake up to my cat swatting at my tubing that had somehow come hanging out from my huge zippered hoodie despite being clippeclips AND velcro AND pouched AND yes he actually put a tiny hole in one tube with his germy cat tooth.

So I call my "medical assistant" at the plastic surgeons office and I swear I am not making this up she says "we can probably fit you in later this week". IM like, that doesnt seem smart since this a cat tooth we are talking about and the tube as lost suction. She puts me on hold and asks the other doctor who agrees its "probably" a good idea to come in today. Mean while I call my surgeon on his cell and he right away calls back and says he will see about patching it and putting it on a different antibiotic.

These are top doctors in DC and their medical assistant lacks common sense that a CAT BITING A DRAIN TUBE that now has lost suctions means you DONT WAIT TILL LATERIN THE WEEK.

Thank you for listening to my rant.

Should we start a new thread just devoted to "stupid crazy crap that happened to my drains"? Maybe a competition is in order? I think I could reasonably expect an honorable mention.

<bonks head on desk bonk bonk bonk><

VL22

tasothi - I’m glad you’re getting this resolved and yes, idiots can be found in every profession, even at the best places.

I had to give a little smile at your story (sorry!) because cats are just such savages, but I love them!

I am reluctantly on tamoxifen and my biggest fear is also my sex live and the general well being of my vagina. I actually stopped taking after 3 months due to SEs (severe hot flashes, tingling and numb face and more) but restarted after a month break.

My biggest rant is that I think doctors downplay side effects.

I will say that my sex life is the same. I use this stuff called Vmagic every day on my lady parts - it’s a natural moisturizer and I love it. If I forget a day however, it does feel dry.

tasothi

Hey its totally ok to laugh at the cat thing. It ended up being quickly resolved. The cut and patched the tube and changed my antibiotics. It was just waking up to this "thwock thwock thwock" sound of him batting at the side of the couch I then looking down and realizing he is playing with my tubing. Like "There is something I didnt think of"!

From his point of view its stationary blood filled wormsnakes just waiting to be thwocked. Why WOULDNT be do that? I was too tired to do anything but tuck them back under my shirt and blanket. THen when I woke up I had to check for holes and , well, there it was.

All's well that ends well. Nice to have an amusing story mixed in there. All in all, I cant complain. Things are going well.

Jadedjo

I'm also someone who is thinking of not doing tamoxifen. My quality of life already sucks if it gets any worse I would rather be dead. It's also why I'm thinking of going only the surgery route. With my luck I'm probably going to be one of the cursed ones where everything goes wrong I don't want to deal with chemo and side effects from medications on top of it.

Whatever your choice may be,good luck with it.

diannemc1957

All I can say is I wish I had never taken Anastrozole..after just 2 weeks it caused so much anxiety..then the crying started and then the worst depression...I stopped it after 1 1/2 months and am not taking anymore...my body felt horrible on it and could not tolerate it.....I am on zoloft now trying to get back to normal.. I have changed my eating habits and losing weight and exercise...looking for good vitamins to take....

renaedarlene

I atrophied on Tamoxifen. I stopped taking it four years ago and have not been able to have sex since without enormous pain. That would be one reason to consider not trying it.