Tamoxifen - Do or Don't?

I had absolutely no side effects from Tamoxifen. Some do have side effects and stop. It's worth trying to see you you react. I don't know where you got your research from, but Osteoporosis is not a side effect of Tamoxifen. I switched to Arimidex about a year ago now that I am post menopausal. Bone loss is a side effect of that and my onc is monitoring my bone density. I have several SEs from Arimidex including joint pain. They're bearable for me, but I am thinking of switching back to Tamoxifen even though It offers less protection.

My point is, everyone reacts differently, give it a try before ruling it out. You can always stop

I think tamoxifen actually improves your bone density, am I right? I don't know, after being on tamoxifen for about a year now, it's not all that evil. I know I've read of women who've had a rough time, but I do believe that's the exception, not the rule. There are soooo many of us out there that do fine on it. If you look at the side effect list on any drug, you will see completely scary things. It's a risk any time you take any pharmaceutical, including Tylenol. There is risk in anything you do. However, it's a personal choice whether or not to take the treatment that's recommended. I chose it because I'd rather wade through side effects (which have not been all that bad) rather than have my cancer come back. My MO said if it comes back it will most likely be stage 4 because there's a higher risk of that than of local recurrence. So being vigilant about mammograms, etc, while great and necessary won't prevent the worst (stage 4) from happening. And as I've shared on other threads, I'm watching a close family member suffer from stage 4 many many many years after her original diagnosis. My current life goal right now it to not have that happen to me. So, ---for me--- I'm extremely grateful that tamoxifen exists and gives me something to fight that with daily.

I don't know if because you have DCIS if the risk levels are different? I honestly don't know much about it. I know with my IDC and the fact that I was 100% estrogen receptor positive, tamoxifen was a no-brainer. It never occurred to me to not take it.

So...what it's been doing---I get hot flashes in the middle of my weird 7 week menstrual cycle. They go away the rest of the time. I've had some dry mouth to contend with--but I kind of already had that, so it's a little more pronounced. I try to drink more water and use Biotene. And some "burning" right before my period---that's kind of new. Other than that...I've also lost weight due to a decreased appetite. None of this is a deal breaker to me. It will be interesting to see if more side effects build over time. I will figure it out as it comes. :-)

I don't know if this is helpful to you at all. I just know it's easy to look at a list of side effects and expect the worst, when most of the time that stuff doesn't happen.

I'm with you KellsO, I'm couple weeks out from my reconstruction surgery and my oncologist wanted me to start it when I'm feeling the best I've felt in months. I decided no, not now. Maybe take a closer look after I'm healing well and feeling good. I agree, all I've heard is horror stories from women that have taken it. I'm already on Herceptin every three weeks and technically I'm "cancer free" as of Nov 2017 since I have a biLat mastectomy. I want to be proactive in fighting recurrences but how much is enough? My oncologist keeps say its a make of "should do" vs. "could do". To be honest I'm not sure what perspective I should have right now. All I can think of is surgery, recovery and then the next surgery...other treatments are secondary at this point. Ugh!

Tamoxifen can cause uterine issues (rare but increases risk) but it actually prevents osteoporosis and acts like estrogen in the bone.

40% recurrence rate? You know that without a family history, you had only a 12% chance of developing BC in your lifetime, right? 12% already hit square between the eyes. 40% is MUCH higher risk, is it one you really want to take? Is it a risk you really want to take jus because of a list of possible side effects that not everyone gets and you haven't even tried it to see if you get any SEs? When it recurs, it's usually much worse the second time around. Often recurs elsewhere in the body (liver, bones, lungs, etc). This means you move to Stage IV overnight. It also means more intense chemo, perhaps chemo for the rest of your life to keep the tumors small, surgery (that lumpectomy you had now is often a mastectomy recommendation), and rads may not even be an option on the table anymore. Is Tamoxifen or any of the AIs going to guarantee no recurrence? No, but it gives you far greater odds than not taking them. Far greater odds of being here and able bodied to be able to take care of those that need you. These are the things I remind myself of when I take my AI every night. Yes, I have side effects but upping my odds against recurrence far outweighs the joint pain and hot flashes. Just my $0.02.

Hello

I was that 1% that got a blood clot after two months on tamoxifen. Clots can happen. I had 5 clots in my lungs. Thankfully, I made it to the ER in time.

KellsO, I am sorry you are facing these hard decisions. I am a little confused why you have a 40% chance of recurrence with DCIS. Did I understand that right? When I had DCIS I was told my recurrence risk was 5%. I was told treatment would reduce my risk 50% but that was relative risk and was really equal to just 2.5% absolute reduction in risk. Stated differently with surgery only I had a 95% chance of no recurrence and with additional treatment that chance increased 2.5% to 97.5%.

Anyway I wanted to tell you my experience. I had a 1 mm lesion in my left side in 2000 when I was 55. The lesion was so small it could not be biopsied so the surgeon just did a lumpectomy not knowing if it was cancer or not. She got good margins. Pathology came back DCIS grade 2. Could not be tested for hormone reception because of the small size. Tumor board recommended radiation and tamoxifen. I refused both. Its been 18 years now and I have not had a recurrence locally or as mets. No one has kept up with my history and so I am not included in the statistics. I think there must be a lot of women who have refused radiation and/or tamox but have not been part of the record. I believe but cannot prove that my cancer was caused by 10 years of hormone therapy which ended when I was diagnosed.

I am on this board in 2018 because I developed IDC on my right side which was diagnosed last Spring. It is Stage IIA. This is not considered a recurrence or related to the earlier DCIS. I have had genetic testing which came back that I have no genetic risk. ( I guess you could argue that the 5 yrs of Tamox starting in 2000 would have prevented this second cancer but I am dubious of that and do not regret refusing tamox). This go round I have had a lumpectomy and chemo but have declined radiation as it would not increase survival odds (only help maybe to reduce local recurrence risk.) My MO is comfortable with this decision. On the other hand, this time I will take a hormone inhibitor beginning this week. It will be an AL not tamoxifen. I am hoping for minimal side effects and will continue unless the AL significantly decreases my quality of life. I am older than you and don't have many productive years left no matter how long I live so I am going to weigh that factor against continuing with the AL if my side effects are bad. On reason I am taking the AL is that I have had 2 medical oncologist and both have said that, because my IDC is highly ER/PR receptive, a hormone inhibitor is more important to my survival that either the chemo I underwent or the radiation I declined.

These decisions are so difficult and very personal. Do what you think is best and don't look back. Best wishes to you.