tamoxifen

surving2015

Started tamoxifen 20mg Aug 2015 following 36 radiation treatments for DCIS 0.5cm. Dec 2016

blood test by PCP showed elevated liver enzymes, recheck in Mar. 2017 the numbers increased.

scheduled for liver ultrasound next week. Side effects for tamoxifen indicate elevations may occur,

also I have shared with PCP intermittent memory loss and confusion. These side effects are listed

on med information sheet, however do I have to make a choice between less protection for cancer

reoccurrence by changing meds or walking around in a fog, with a damaged liver. Based on liver

ultrasound results an earlier visit to ONC may be in order. Whew, that felt better to talk it out.

Be Blessed

Wingsofglass

Hi there, I was diagnosed with DCIS in Situ in October 2016. I am great full it was a cluster contained in the milk duct. I was given the choice or masectomy or lumpectomy. I chose lumpectomy. Followed by 20 radiation treatments. I completed those in Feb. Now I am at a crossroads and very apprehensive of taking the Tamoxifen 20mg my oncologist has prescribed for me to take overthe next 5 yrs. I filled the prescription but can't bring myself to start taking it. I am worried that this medicine will cause cancer of another form to appear. I tried to talk to the oncologist but was dismissed with his dry humor.

Has anyone chose to have surgery or lumpectomy, done radiation, the not taken the Taxoxifen? Am I being a baby or worry wart?

Moderators

Hi Surviving2015 and Wingsofglass-

Welcome to BCO! We hope you both find this community to be a place of support when you need it most. You may want to try your questions in our Tamoxifen thread, it's really extensive and full of lots of great info: https://community.breastcancer.org/forum/78/topics...

Hope you find the answers you're looking for!

The Mods

Annette47

While some people such as the OP do have complications from Tamoxifen that are bad enough to be concerning, the vast majority of people tolerate it just fine or have only minor side effects. I’ve been on it almost 4 years and have had some hot flashes and other minor issues, but nothing to the point that would make me want to stop taking it.

Just remember that people are more likely to post if they have something to talk about - those of us tolerating it well don’t usually have a reason to bring it up.

Dandorfer

Hi there I was diagnosed in stage 2 years ago at age 47, hadnt spread to lymph nodes so had a right masectomy. I did four rounds of chemo since two siblings had cancer young, one died of lung cancer at 49. I do not have any of the genes, did both BRACs. My Dr. Put me on tamoxifin which I took for a few months and couldnt tolerate. I had my ovaries out and thought that would be the end but was perscribed another estrogen blocker. Havent taken it. I am focused on changing my lifestyle. Dr.'s arent giving us information on how diet and excersise keep your estrogen levels down. I would recommend a book called AntiCancer a New Way of life by dr. david servan schreiber. I am 2 years cancer free but worry about it coming back. Be sure your vitamin d level is normal and get on a probiotic. I am also taking CBD oil. Also got informed on my lymphatic system to be sure toxins are getting flushed from my body through massage and deep breathing/yoga. Goodluck...i know how you feel I hope this was helpful.

dtad

Annette47...Hi there. To start I happy you are doing well on Tamoxifen and I fully support your decision to take it. However your statement that the vast majority of us tolerate it fine is just not true. The fact remains that only 50 percent complete the 5 recommended years due to SEs. My concern is that those of us that are not doing well on it are not validated. Also would love to see some research on better treatment options.

Dandorfer...I completely agree that diet and exercise to reduce estrogen levels is underestimated. I also see a contradiction that anti hormone treatment make it difficult for most to both lose weight and exercise. Good luck to all navigating this difficult disease

Bdagal

Hi wingsofglass - I met with our oncologist on Tuesday. I had 2 suspected incidences of mini-stroke about 8 years ago - we were never able to find a definitive diagnosis but I had on 2 separate occasions very slurred speech (minus the benefits of alcohol, lol!). My GP immediately took me off of the pill and something in my bloodwork indicated elevated risk of clotting. As one of the possible side effects of the Tamoxifen is clotting / stroke our oncologist said that he would not recommend that I take the tamoxifen. He said that if I were to go through menopause - either naturally or induced - there is another med that he would consider at that time as it does not have those same risks.

Wingsofglass

Thank you for your replies. The more I have read about Tamoxifen the more scared I become. I discussed fear with onocologist he blew me off. I filled prescription but didnt start taking. I am suppose to see him next month. Meantime, i had appt. With my radiologist and explainneed my concerns. He urged me to take it and said it actually gives you a 51% advantage to no return. I had understood followingsurgury, if i did the radiation treatments I decreased my chance of reoccurrence by 15%, and by taking Tamoxifen for 5 yrs. I could decrease it returning by another 15%. All combined reducing 30%. FYI- I take medication for anxiety & depression,I am overweight , have high blood pressure, type diabetes, high bad cholesterol, low good cholesterol.I am concerned about strokes and clotting and damage to my other organs. I feel pressured to take Tamoxifen but I really don't think the doctors are considering what is best for MY overall health. I feel I should research diet, exercise etc and take a holistic approach to avoid reoccurrence.

dtad

Wingofglass...So sorry you are having difficulty with your decision. IMO if docs would take the time to discuss possible SEs of anti hormone treatment it would be easier to make informed decisions. Just blowing you off does not help! Maybe you should consider seeing a different MO. The SEs you speak of are very serious and they should not take it lightly! There are ways to lower your estrogen naturally but Im not saying thats what you should do. Just research as much as possible. Ultimately we are responsible for our own health even when docs don't make that easy. Good luck and keep us posted.

Professor50

After my first 6 months of tamoxifen I found myself unable to concentrate and feeling like I was definitely living in a fog. I found this unacceptable and was able to cajole my MO into switching me to an AI with a Lupron shot. I did that for a couple of months. The experience was devastating to my joints. My hands were so swollen I could barely type. My knees and feet joints were so messed up. So, I quit that and took a couple of weeks and made a decision to go back on tamoxifen. I am on it now and have been ever since--18 months I guess. I have to say that this second time I have had a better experience. I still can feel the impinging fog sometimes. What I have done is upped my activity level considerably. I used to run 1-2 miles a day. Now I am doing 3-4 (with a couple days off a week). I am eating less (I have never been a person who eats "bad food." I don't even like sweets). I have also upped my coffee in the morning, using caffeine to fight the energy blah that has sometimes come with the tamoxifen. I take a baby aspirin and CoQ10 and am holding steady. What I am trying to say is that I stopped constantly thinking about the side effects and started to just own my experience and to do anything I could to stay on this drug. I know that it comes with risks but I want to do everything I can to avoid a recurrence. I know I am a strong person and I have dedicated myself to putting all my strength toward living my life and living it well while also taking this medication. I am comforted to know that tamoxifen is likely one of the reasons I have been able to increase my running distance because it is good for my bones. I also think about the fact that it is decreasing the risk of cancer in my unaffected breast. It is hard mental work to keep this up but I am committed to it. (I have also lost about 10 lbs of my tamoxifen weight and hope to lose more but that is not my focus. My focus is on staying well and happy while also preventing a recurrence).

I would also mention that in my experience (for whatever reason), ROs are much more open to talking about side effects of tamoxifen and helping to come up with strategies to combat these. My MOs just seem to look past me when I have talked about it. My ROs are more likely to engage in a conversation, validate my experience, and listen. In fact, when I have mentioned that "maybe this isn't tamoxifen maybe it is just menopause" my RO is the one who said, "It's probably the tamoxifen. You are not alone. Is there anything we can do to help?" Just getting the validation and support (and honestly, some praise for trying my best to stay on it) has been tremendously helpful.

I used to think of tamoxifen as a reminder that I had cancer. I felt like if only I could stop taking it I could stop feeling like a person who had cancer.

Now, I look at my life and all the things I love about it and I see that difficult little pill as helping me keep all those things as long as I can. I see it much more as my friend than my enemy. But it has taken time and energy.

dtad

Professor...I happy for you that your RO is open and able to discuss more with you than your MO. Unfortunately we all don't have ROs. It is the role of the prescribing doc to do it! I think its so sad. We deserve better and need to speak up!

Icantri

I should have read this thread before starting a new topic on being tired on Tamoxifen. It is validating to see I am not alone. Like Professor, I try to ignore and push through the tiredness and d what I gotta do to be the best I can be, but some days....