Testimony: overcome BC without tamoxifen

MedeaOz17

Hello everybody,

I am very bad time, I`m really struggling to get this right because it is so important in my life. I need help. I am no able to decide if take or no take tamoxifen. I am 45 years old, and I didn't need chemotherapy, just surgery and radiation. But thinking in taking tamoxifen for 5 years is killing me. I will be grateful for testimony of someone who despite being advised to take tamoxifen didn't do. I would like to know if you don't take tamoxifen you don't have any chance to be free of BC. Someone of you do have overcome a BC (low risk, 12mm) without taking tamoxifen?

Please, and looking for testimonies of person who didn't take tamoxifen, not for opinions about this topic, because I have a lot information about this drogue and i so confused.

Somebody can help me explaining her experience?

Thank you everybody in advance

Medea

mauigirl62

Medea

I am struggling with the same thing. I am 55 stage 1 DCSI Invasive. I am starting radiation in 3 weeks. My Dr. put me on Tamoxifen now until I start radiation because of a mess up with my surgery.( I had to have 2 surgeries because they did not get the cancer the first time.) I really am not sure if Tamoxifen is causing all my anxiety. For me I do not like Tamoxifen. Every day I feel different. Some days I feel great some days I feel sick, weak, anxiety, sad. I sure hope the positive out way the negative on radiation and Tamoxifen.

Looking forward to some input!

Lisa

MedeaOz17

Hi Lisa,

I was supposed to take tamoxifen 2 month ago, but i am terrified about SE and then I am thinking in not to take, but this option also scare me.

It is very hard decision and just I can think in other natural options from tamoxifen, but I am not sure if I am taking the right way.

As you, looking forward to some positive input.

Medea

Bosombuddy101

Well, the first thing you have to do is have a discussion with your doctor about the risk of recurrence in your particular case without the drug and how taking tamoxifen will reduce this risk of recurrence. Depending on the characteristics of your tumor, you may be surprised how very little impact taking the drug affects your overall survival. Have you requested the Oncotype Dx score? Some women also have their ovaries removed in order to stop the estrogen that feeds the tumors--- if your tumor is hormone positive. Anyway, good luck navigating your treatment. I'm fairly new at this myself, but this is something I intend to discuss with my doctor once my surgeries are done.

Jackster51

Medea, I would suggest trying it, as some women do not get bad side effects. Some of course do. You can always stop it after you start.

Lisey

I was scared to take Tamoxifen, but I just jumped in and tried it. 1 year later, I have no side effects and feel great. At the very least you should try it for a month or two.

ChiSandy

Hate to say it, but getting your ovaries removed will not stop your body from making estrogen. Even without ovaries, our fat cells (not the fat inside them) and adrenal glands secrete an androgen, which the enzyme aromatase, secreted by the liver, helps convert into estrogen. But because aromatase inhibitors (AIs: Arimidex, Femara, or Aromasin) are more effective than Tamoxifen in preventing recurrence in post-menopausal women, many oncologists recommend starting on Tamoxifen while still pre-menopausal, then as menopause approaches, suppressing the ovaries with another drug (or removing them) and switching to an aromatase inhibitor.

I take it you are not in the USA? Is the OncotypeDX test available in your country and do you have coverage for it? If your score is low enough, you might not see enough of an advantage from adding anti-hormone therapy to surgery & radiation.

Medea, there is NO “natural” alternative. Despite what you may read on certain “alternative medicine” websites (or the “alternative medicine” thread on this site), refusing conventional drug therapy in favor of “natural” stuff like herbs & certain foods almost always has tragic results.

MedeaOz17

Thanks everybody for your answers.

I am hormone positive. I'm not from USA but in my country people test her risk by Oncotype or PAM50t. My PAM50t say my recurrence risk is 4% over 10 years (but this number is doing endocrine therapy 5 years tamoxifen, I think). It seems low, but my doctor say I must take tamoxifen in order to decrease this risk.

Somebody is a similar condition have avoid tamoxifen and can explain me her experience?

obsolete

Medea, welcome, and I'm sorry you have reasons to join BCO. My oncologist had clearly stated that there is NO 100% guarantee that Tamoxifen or the Aromatase Inhibitor chemical drugs would "prevent" a BC recurrence or new primary BC. Although Tamoxifen is an anti-viral drug, it's antagonist features are not without tragic risks, such as DVT (blood clotting). Not all patients effectively metabolize Tamoxifen. Patients' BC can recur while on Tamoxifen, as you know.

While on Tamoxifen, I had suffered DVT (blood clots in legs) without any advance symptoms or warnings. Following an auto accident, I had suffered dangerous pulmonary embolisms (blood clots in lungs). My doctors immediately took me off Tamoxifen, as a result.

Medea, you are wise to do your research. Best wishes.

obsolete

Any remarks made against healthy lifestyles & such, should be accompanied by links to peer-reviewed studies, articles, etc., if not cited as personal experience..

Blind statements, which include exaggerations, such as "almost always has tragic results", without providing any legitimate sources or links, is merely conjecture which can mistakenly mislead readers. My apologies for feeling the need to point out any such perceived errors in judgement. Wishing you the best.

MedeaOz17

Thanks Obsolte,

I am very sad after know what have you suffered. I hope you are much better now.

Also I wish the best for you.

ChiSandy

A visit to the informational areas of BCO will confirm that alternative medicine (as opposed to complementary therapies—natural stuff along with conventional therapy) has a much poorer prognosis than conventional for cancer. Clinical Oncology, MPR Daily Dose and Consultant 360 (e-mail newsletters for MDs & medical professionals to which my husband—a cardiologist & gerontologist—subscribes) published articles over the past week to that effect. (If he hasn't deleted the e-mails, I will post links). Not saying that skipping anti-hormonals will always cause an earlier death, especially if you are worried about side effects that could increase risks of dying from other diseases. But just “going natural" on principle for the duration of your disease almost never ends well. (The websites that say otherwise have been debunked by Quackwatch, ScienceBasedMedicine and other watchdogs).

We have a woman in our bc support group who took one neoadjuvant Taxol treatment and decided to do nothing but herbs, mushrooms and food-based remedies. She even refused any surgery and likes to observe how her tumor “waxes & wanes." WTH??? Anything any of the rest of us say, and she's off on a rant about Big Pharma pushing “patented drugs" and sitting on research results (e.g., that many ulcers are caused by h. pylori) until their drugs' patents expire. There is no reasoning with her: Drugs bad. MDs bad. Naturopaths & chiropractors are saints & geniuses.

And sorry, but the only place we're not allowed to “dis" alternative therapies is the Alternative forum—and the moderators posted a sticky saying that the presence of that forum is NOT an endorsement of alternative & natural remedies instead of conventional medicine, but rather a safe space where like-minded patients can post without judgment. But if you post advocating natural treatments instead of scientific medicine anywhere else, your posts are fair game.

MTwoman

I agree with ChiSandy, and would add the following correction:

" Although Tamoxifen is an anti-viral drug"

It isn't. Anti-viral drugs are medications used to treat viral infections, like antibiotics are used to treat bacterial infections. Tamox is an estrogen agonist/antagonist.

Wanted to clear that up for anyone reading this thread in the future.

MedeaOz17

Hi ChiSandy,

thanks for nothing.

Are you a testimony who overcame BC without tamoxifen, not, you aren't. Then why you answer my question? Could be because you have a lot of free time to write 7. 128 post? It is not enough reason to answer to me. As I can see, despite having written these posts you are not able yet to understant thats mine. Could be this help you in order to undertand :

"Please, and looking for testimonies of person who didn't take tamoxifen, not for opinions about this topic, because I have a lot information about this drogue and i so confused."

And you don't have to say to me where put my questions, first of all because you have not understood. And my english is not the best, but very understandable. And another question FYI, I am a doctor in biology, I work in an hospital. Could be for this reason I am so confused.

Thanks in advance for you empathy.

Medea

NancyHB

Medea - it's hard to answer your question, as there is no guarantee that taking Tamoxifen will keep you from a recurrence, nor that not taking it will cause a recurrence. Our experience will not be yours, but as you asked for our experiences, I'll share mine.

I had ER+ BC five years ago with a very high Oncotype score (42); my chance of recurrence after chemo AND Tamoxifen was still 18%. I tried Tamoxifen for a few months and had bad side effects so I switched to Aromasin; that was worse so I went back to Tamoxifen. After nine months I stopped. Four years later I had a local recurrence (same spot/same breast) but this time the cancer was triple negative - no option to take Tamoxifen. Six months after completing chemo, I was diagnosed with mets to my bones and am now Stage IV. So, sorry - I didn't overcome BC without Tamoxifen, even with an original ER+ BC that was 13 mm.

When I chose to stop taking Tamoxifen I knew my risks of recurrence. I made peace with myself that I wouldn't ever blame myself should I recur. While the side effects can be difficult, you won't know if you're going to have any until you try it, so I encourage you to do so. You can always stop if it's too much - but you can't "take it back" if you don't and wind up with metastatic disease. All I know is that when someone has a metastatic recurrence and is ER+, one of the first treatments often given is Tamoxifen. My oncologist was adamant that Tamoxifen was just as powerful, if not more so, than chemotherapy in treating our disease

All we have is our experiences, which include our emotions and opinions of this disease and treatments. It's hard to give you one without the other.

I hope you find the answers you're looking for.

MedeaOz17

Hi Nancy,

Thanks for share your experience. I Know that each experience will be different depending of the person, but in some moments one need to know other experiences. I am really sorry about your diagnostic, but never nobody will know what had happened if you had taken tamoxifen over 5 years. Also I surprise that you recur was hormone negative, then this means that tamoxifen couldn't have done effect? Sorry for my questions, but you didn't think that the first even could the same negative, did you?

I wish the best for you and thanks again for your testimony.

Medea

MedeaOz17

Hi Nancy,

Thanks for share your experience. I Know that each experience will be different depending of the person, but in some moments one need to know other experiences. I am really sorry about your diagnostic, but never nobody will know what had happened if you had taken tamoxifen over 5 years. Also I surprise that you recur was hormone negative, then this means that tamoxifen couldn't have done effect? Sorry for my questions, but you didn't think that the first even could the same negative, did you?

I wish the best for you and thanks again for your testimony.

Medea

NancyHB

Now that I've already posted, I had another thought Medea - what is your definition or expectation of "overcoming" breast cancer without Tamoxifen? Is it never having a recurrence and living a long happy life, eventually dying of something else? If that's your hope, then my answer to you is yes, it's possible that's happened for some of us. You may not find them here though because they're off living their lives, and also because they're still waiting to get to that "old age without recurrence" point. As a doctor of biology you must know that breast cancer had the possibility of recurrence years after diagnosis, so it can take time to see real "success" in that manner.

If you're looking for an alternative to Tamoxifen with no side effects that guarantees no recurrence - I don't know that you'll find that. It doesn't exist - if it did we'd all be taking it. There are lots of ways to reduce the chances of recurrence through diet, exercise, potentially some supplements.

You say that the thought of taking Tamoxifen is "killing you" - can you share more about your concerns and fears? Im so sorry you feel this way but do remember having fear myself at the thought of Tamoxifen. Maybe if we understood where you're coming from, we could help more.

Peacetoallcuzweneedit

Hi Madea -

I was diagnosed in May, but my experience is not what I am sharing. I would take Tamox if recommended for me. I will share my downstair's neighbor story. She came upstairs, when I diagnosed and offered an ear. She told me she was a 10yr survivor. She is 49-50yo now. She and I had similar diagnoses - see below - even had the same breast surgeon (weird coincidence- considering she just moved in the spring, and she and I never really knew each before breast cancer, besides the occasional "hello") However she had multi micro-invasions and it was recommended by one tumor board to take Tamox and the other tumor board had a 50/50 opinion. She decided against it, which the docs at the time were pretty taken aback that she did not proceed from her report. She did not have radiation, only bilateral MX and clear nodes. She is still NED and is fine and does not post on this site. She said, "it is not her thing." This is HER story and I am sharing a snippet....

I think women can make their own decisions, but I also believe one has to make sure the risks are understood. I think, what may seem logical and correct for one, may not be the right choice for others. Again, risks have to be understood and the reality of being diagnosed with cancer or any disease is that it comes with it's own mental journey. Up ahead, we may make different decisions. Fear, anxiety, etc can impact today...or vice versa

dtad

Hi everyone...we all have to make our own informed decisions about our treatment plans. One thing we know for sure is that there are no guarantees whether we decide to take anti hormones or not. Every case is different and every circumstance is different. W just need to respect and support all individual decisions made without judgment. Good luck to all navigating this complicated disease.

Wildplaces

http://www.thelancet.com/pdfs/journals/lancet/PIIS...(11)60993-8.pdf

The last paragraph states the improvement with Tamoxifen at 5 years was seen regardless of age, size, grade and nodal status.

I am trying to understand why the fear to try Tamoxifen...

MelissaDallas

I see lots of posts where women have apparently read posts here regarding AIs and assume the side effects of Tamoxifen are the same, and they are not. Very different drugs with completely different mechanism of action