Anyone else elect to NOT take Tamoxifen?

There are many women who choose to not take Tamoxifen after a lumpectomy for DCIS, but each case is unique and needs to be assessed on it's own merits.

The reason to take Tamoxifen is that it can reduce recurrence risk by almost 50%.  That's a big deal if your recurrence risk is 20%, since it means that Tamoxifen can cut your risk down to 10%.  But that's not such a big deal if your recurrence risk is 4%, meaning that Tamoxifen can cut it to 2%. 

So the question is, what is your recurrence risk after surgery and rads?  Some of the key factors that influence recurrence risk are:  

- the size of the area of DCIS

- whether there was a single focus of DCIS or whether it was multi-focal

- the grade of the DCIS and whether there was any comedonecrosis present

- the size of the surgical margins

- the age of the patient.

Has your oncologist talked to you about what your recurrence risk is?

Although often recommended, taking tamoxifen is controversial. I opted not to take it in 2007 after consulting with Dr. Michael Lagios, a DCIS expert and pathologist with a consulting service that anyone can use. 

On his website, Dr. Lagios states: “The clinical benefit of tamoxifen
intervention based on the randomized trials is meager at best. There
appears to be no benefit, at least in the UK/ANZ trial for tamoxifen
amongst irradiated patients, and the benefits when claimed are very
small.”

Although tamoxifen purportedly can reduce the risk of recurrence by up to 50 percent or more in some studies, in reality these are relative, not absolute risk reduction numbers. For instance, if tamoxifen reduces the risk of recurrence from 10 to 5 percent, it is a 50 percent relative risk reduction, but the absolute risk reduction is only actually 5 percent (10 percent minus 5 percent). 

If you would like to read more about the risks vs the benefits of tamoxifen feel free to check out our new website:

http://dcisredefined.org/choices/tamoxifen/

This is an excerpt from our page on tamoxifen:

"According to Dr. Susan Love:
“Tamoxifen is not a mandatory treatment. It is a choice. To decide
whether it is right for you, you need to weigh the risks versus the
benefits.” To do this, a study’s relative risk numbers must always be
compared to its absolute risk numbers. For instance, when a 2005 study known as P-1
reported that tamoxifen reduced invasive breast cancer recurrence by
42%, the absolute risk reduction merely went from 4.25% to 2.48%, an
actual reduction of only 1.77%. Again in 1998, although the Breast Cancer Prevention Trial
found that tamoxifen reduced the incidence of breast cancer in women
with atypia by 86 percent, when broken down to absolute risk reduction,
this number was less than 1%."

Tamoxifen is the only choice for ER+ in pre-menopausal women. The aromatase inhibitors only work for those who are post-menopausal.  My RO has discussed switching my ER+ treatment over once I become menopausal and sees a slight improvement in reducing recurrence over Tamoxifen. 

because kjdds says she is 43 I am making an assumption she is not in menopause?

Yes, Kidds, I elected not to take tamoxifen. Quite similarly, I was also diagnosed at 43, had a lumpectomy and six weeks of rads. But thankfully my onc. did not give me a hard sell on taking tamoxifen. She gave me my statistics and answered all of my questions; she respected me when I told her that I did not feel that the benefits outweighed the costs (for my personal medical situation/stats) but that I did want to have her write me the prescription just in case I changed my mind. 

That was 4 years ago, never changed my mind, take no medications at all except an over-the-counter daily baby aspirin because I'm comfortable with the costs/benefits, and fortunately all has been well. I am still pre-menopausal.

It is very important to make the right decisions for you so that you have good inner peace. No regrets, regardless of what the future may or may not bring. 

I researched Tamoxifen and the possible side effects were not acceptable to me so I decided not to take it. I get a little tired of the doctors saying "just try it". You just try it doctor! It is my body. I decide what happens to it. If Tamoxifen causes potential blood clots and uterine sarcoma, then it is not for me,

Me. I chose not to. My MO is very supportive. He told me he could not in all good conscience tell me Tamoxifen was a better option for me because I would just be taking it for prevention. (Remember, everyone is different He said as long as I agreed to mammograms, self breast exam, clinical breast exam, and periodic MRI's he would see me every 6 months. Any hint of trouble and he would order an MRI right away. He said if it get a new cancer in the opposite breast we will catch it early and he won't let me die. Some people think that sounded arrogant. I didn't take it that way. I understand what he was trying to say  

Well; it's not Tamoxifem for me, but Arimidex.  Just met with my great MO. She always advises hormonal therapy, as it cuts your reccurance chance in half.  I didn't want it, as so many women here felt it turned them, with joint issues, into "an old woman".  She had to say that she has to recommend it as it is" "advisable", but concurred that the the side effects can be awful, so, as  my recurrance chance is 5%, not much value.  I was glad to have the pass.

i have tried arimidex for 6 months. horrible.debilitating. took about a month break,started tamoxifen for 5 months. horrible. debilitating. am just finishing up almost a month break, and pains are better, by no means gone. everyday i am taking opiates for pain, just to be able to function. and have ever since surgury. i was in excellent shape before all this, 6 or so years past meno, and felt great. worked in construction, made art for fun. and one thing i have noticed, 12 days into tamox break, i could feel my creative juices begin to just barely come alive. and felt like i could do something. and i felt just a tiny little moisture, down there, and a little twinge of my libido! i really dont know what to do. i am 53, and i dont want to feel that bad again. and it would be nice to stop taking pills of any kind.

After being dx two years ago, having a lumpectomy and removal of sentinel node, scoring a 13 on my onc test, I refused radiation, and as a compromise agreed to take tamoxifen (I've had a complete hysterectomy).  Rather than take the full dose, I split the pill in half, and other than some mild hot flashes, I've had no SE's.

I elected to change my diet and use supplements to help prevent a recurrence.  So far so good.