Quitting my treatment

I just sent my oncologist a message that I am declining the tamoxifen. I know it is dangerous, but the price is too high. I need my brain, and the chemo drugs have impaired my thinking so much I feel like Dorry the fish. The anti estrogen treatments arimidex and tamoxifen leaves you with declining cognitive abilities. I can deal with the chemo brain till it wears off, hopefully, but not 10 years of chemo brain. I will be over 70 when I get my brain back, I can't deal with that. I live alone and need to be able to think clearly.

I'm really interested in this topic because I'm supposed to go on it after my surgery.

Now I'm scared.

What about the people on the forum who've done estrogen supression through natural means?

Also, are there no drug alternatives to Tamoxifen?

What about clinical trials for new drugs?

swg....I know its a hard decision. My advice would be to do your research before making any decisions. Everyone has different experiences on anti hormone treatment so you cannot generalized. Good luck to all.

Your life, your choice. Hope you will be ok.

I've been on Tamoxifen for 6 months now. It has been tolerable. I have had a few hot flashes, some worse than others but nothing I couldn't deal with. I do often wake up with a low grade headache that a dose of Advil or Tylenol can fix. I was early stage but Grade 2 so I want to try and stick it out. I am premenopausal. No real signs of any changes. It this drug causes symptoms that make my everyday life not enjoyable, I will be done

I've been on Tamoxifen for over two years. I've had some side effects, mostly hot flashes and joint pain. These were worse in the beginning, and now are manageable. I consider every day on Tamoxifen to be a day where I actively lower my recurrence risk. When I take the pill, I think or say, "Thank you, Tamoxifen" so that I will have it in my head that it is a positive force in my life, not something to be feared.

It seems that the issue is not the drug, but the lack of estrogen and its effect on the verbal response as well as speed of processing and memory. (cognitive decline)

https://www.medscape.org/viewarticle/736541

Just want to remind everyone that there is a thread on this forum titled doing well on anti hormones, or something like that!

I started out with Arimidex but when I was DX with borderline osteoporosis my MO switched me to Tamoxifen. I took it for 4 years. I am 6 years out last August. My Oncotype score was 11 with an 8% chance of recurrence. No guarantees of course.

I had joint pain, hot flashes and difficulty concentrating plus a bit of weight gain. All manageable. My MO said I could discontinue taking it after I hit the 5 year milestone. I had early stage IDC, Stage 1b, Grade 1. She didn’t see the need for me to continue plus the risk of blood clots, etc.

I never considered not taking it. To me it was an added insurance policy to prevent a recurrence.

To be fair there are ladies who had and have debilitating SEs from the drug so to me it comes down to quality of life. Fortunately I didn’t have to make that decision.

I have read many posts from women who went one way or the other with no consequences as a result and the reverse. It’s truly a crap shoot regardless of what the medical community says.

Bottom line it is a personal issue. No right or wrong answers because it’s your life. Just don’t second guess yourself or look back and wonder what if...

Diane

Just adding my two cents to underscore what has already been stated - that everyone responds differently to treatments and usually if someone is doing well they don't post about it.  Posts are more often than not from those who are experience negative side effects.  I was on Tamoxifen for 18 months and I found it to be a walk in the park.  I had an excellent quality of life while on it.  

So for those of you who have not tried Tamoxifen yet I would recommend you try it first and if you can't tolerate or don't want to tolerate the side effects that you experience then you can always stop taking the drug.  It is very important to base your decision on your needs and experiences.  You have to do what is right for you and your family.  

No one is shunning you. They are just pointing out the reasons they are staying on the drugs and how to cope. I will add that I don't feel the same either and it is disconcerting. I cry at the drop of a hat and I very often forget the last word of the sentence I am saying. Just the last word, so bizarre. I now get bursitis when I never had it before, joint pain, foot pain, etc. For me, I decided I would do whatever it takes because this is my main treatment and my BCI came back high risk for late recurrence. These boards have helped immensely because so many women share how they deal with side effects and I learn something new every day. If you decide that the side effects are unbearable, that is your choice and no one thinks less of you. Side effects suck and they are the unseen aftermath of ER positive BC that Joe Public doesn't understand. That is why we come here to commiserate, not judge.

Most people do NOT have debilitating side effects from Tamoxifen. That's a fact.

More people diagnosed with breast cancer are alive because of taking Tamoxifen. That's another fact.

The oncologist wanted me to take tamoxifen for five years. I chose not to take it because of a family history of stroke risk. I was not offered anything else.

Nine years later - another breast cancer.

I do not regret not taking tamoxifen. Maybe it would have kept the new cancer away. Maybe not. I don't know.

Everyone's situation is different. I would not interpret my experience as meaning that one should or should not take tamoxifen. I'm just reporting what happened to me.

This time, I was offered anastrozole and am taking it.

What a joy ride. (joke)

You are right, it is no fun. I never realized there would be so many decisions to be made regarding treatment. Silly me-it's been a learning experience for sure! It's like a conflict between your mind and body sometimes. Maybe a different perspective with a second opinion is a good idea, if you are unsure. I quit my Tam last yr and informed my MO after the fact. We discussed it and she basically said that she knew I had done my due diligence and did not discourage me in any way. I think some Dr's are too quick to follow "standard practice" and are not always open to their patients' input. I'm not saying that is the case with anyone, but it is your body. I'm happy with my Dr's and my decisions. To me, peace of mind is an important part of my future and QOL also. Find what works for you and do it!:)

For thoseof usthat didn’tchoose chemo..

(Medical Xpress)—A team of researchers working at the Albert Einstein College of Medicine in the U.S. has found evidence that suggests administering chemotherapy to breast cancer patients prior to surgery can put them at increased risk for metastasis. In their paper published in the journal Science Translational Medicine, the group describes how they followed the treatment of 20 cancer patients and tested them for structures in the blood that indicate a higher risk for cancer spreading and what they found.

One of the most common ways to treat breast cancer is to administer chemotherapy and then to perform surgery to remove the tumor. It is believed that in addition to reducing tumor size, the chemotherapy drugs reduce the chance of the cancer spreading to other parts of the body. But now, it appears that that the latter assumption may not only be wrong, but the opposite of what actually occurs.

In this new effort, the researchers began by noting that some recent studies have suggested that instead of reducing the spread of cancer, some chemotherapy drugs might actually be making it easier for cancer cells to migrate to other body parts. To find out if that might be true, the team measured levels of tumor microenvironment of metastasis (TMEMs) in 20 breast cancer patients throughout their treatment. TMEMs are structures shown to be an indicator of metastasis. The researchers report that they found elevated levels of TMEMs in all of the patients that had received chemotherapy prior to having surgery.

The researchers also conducted research a breast cancer mouse model—they report that they found an increase in TMEM sites in mice that had received chemotherapy compared to those that did not.

Chemotherapies can induce changes within the breast tumor microenvironment that serve as sites to promote cancer spreading (indicated with arrow) Credit: G.S. Karagiannis et al., Science Translational Medicine (2017)

The researchers also found that one such chemotherapy drug in particular, paclitaxel, caused bone marrow cells with TIE2 receptors to move to tumors, which resulted in TMEM formation. When they blocked the TIE2 with drugs, the number of TMEM sites in chemotherapy-treated mice did not increase.

The researchers suggest that more research needs to be done to better ascertain if chemotherapy drugs are causing cancers to spread and that in the meantime, some doctors may consider performing surgery first, then prescribing chemotherapy for breast cancer patients.

Chemotherapies can induce changes within the breast tumor microenvironment that serve as sites to promote cancer spreading (indicated with arrow) Credit: G.S. Karagiannis et al., Science Translational Medicine (2017)

Explore further: Identification of a chemotherapy resistance factor in breast cancer patients

More information: Neoadjuvant chemotherapy induces breast cancer metastasis through a TMEM-mediated mechanism, Science Translational Medicine 05 Jul 2017: Vol. 9, Issue 397, eaan0026 , DOI: 10.1126/scitranslmed.aan0026 , http://stm.sciencemag.org/content/9/397/eaan0026

Abstract
Breast cancer cells disseminate through TIE2/MENACalc/MENAINV-dependent cancer cell intravasation sites, called tumor microenvironment of metastasis (TMEM), which are clinically validated as prognostic markers of metastasis in breast cancer patients. Using fixed tissue and intravital imaging of a PyMT murine model and patient-derived xenografts, we show that chemotherapy increases the density and activity of TMEM sites and Mena expression and promotes distant metastasis. Moreover, in the residual breast cancers of patients treated with neoadjuvant paclitaxel after doxorubicin plus cyclophosphamide, TMEM score and its mechanistically connected MENAINV isoform expression pattern were both increased, suggesting that chemotherapy, despite decreasing tumor size, increases the risk of metastatic dissemination. Chemotherapy-induced TMEM activity and cancer cell dissemination were reversed by either administration of the TIE2 inhibitor rebastinib or knockdown of the MENA gene. Our results indicate that TMEM score increases and MENA isoform expression pattern changes with chemotherapy and can be used in predicting prometastatic changes in response to chemotherapy. Furthermore, inhibitors of TMEM function may improve clinical benefits of chemotherapy in the neoadjuvant setting or in metastatic disease.

Journal reference: Science Translational Medicine