Is Tamoxifen Worth It?

Dustien

Thanks, NotSoBrave, for sharing your experience.  So was it any problem just quitting?  How long before the SE's subsided?  Hope your other therapy's knocked it out and you never have to worry about giving up the Tamox.

Thanks again!

NotVeryBrave

The only problem with quitting was that my MO wasn't happy about it. But I know his job is to eradicate cancer and he has to recommend what's available. I'm not very interested in the AI's since I already have some joint pains and have osteopenia by DEXA scan. Chemo put me into menopause, but I haven't had hormone levels checked to see if it's permanent yet.

The SE's took a surprisingly long time to go away - about 6-8 weeks or so. Once I feel like I'm completely normal (whatever that is), I may try again. I'm planning to see another MO for a second opinion about future follow up care and I'll see what they have to say about my risks.

Dustien

I hate hearing that the side effects too so long to disappear.  My biggest fear is the depression that could arise.  I am a very positive type person and I'm afraid depression would affect my decision making dramatically.  I've know a few in our family who have depression, and they just don't know they are depressed.  They think that what they are feeling, doing, and how they are reacting to things are their normal, not remembering how they used to be at all so not trying to take an active role in fighting it. 

A friends 14 yr old daughter committed suicide because one of her medications took her deep into depression and before they were able to get her medicines adjusted, she was dead.

Lula73

Dustien- I totally get where you’re coming from on the potential for depression. Here’s what I can tell you, I actually stopped my antidepressant when I went on tamoxifen (drug to drug interaction). I was actually feeling more positive and upbeat for quite some time. Had to stop tamoxifen 2.5 months in and continued just fine without restarting antidepressant for about 9 more months. DH noticed I was getting a little snappy and short in my responses when he’d ask me any question. That was my first sign way back when I started the antidepressant, so I went back on. GYN added 1/2 dose of Zoloft to try and help with hot flashes post oophorectomy. That turned out to be too much. Thoughts became more negative and I was contemplating decisions that would have s negative impact on my life (quitting my job that I live, sell everything and move, etc) these were things I very rarely if ever contemplate and I just felt very down and heavy and tired - oh so tired. I stopped the Zoloft and was just on my regular antidepressant and all those thoughts went away, I’m positive again and I feel lighter and the fatigue went away. I guess what I’m trying to say is be vigilant of how you’re feeling and your thoughts. Compare them to before and whether you’d usually think That way before. Ask someone you interact with often to be vigilant with you and to let you know immediately if you seem short tempered, down, negative more than usual etc. yes these things can sneak up on you as in the example given above, however if you the patient plus another 1 or 2 are vigilant, you’re much more likely to catch it early and start on a compatible antidepressant. Hope this helps!

NotVeryBrave

Yes - depression and trouble concentrating were some of my possible SE's. I say possible because I was also having some relationship difficulties with my mother at the time as well as feeling pretty overwhelmed with my one year cancerversary.

It's hard to know sometimes just what causes what, especially with all the stuff we take and do to get rid of the cancer!

swg

You will see that this board is mostly full of pro-meds people. I think that reflects our society in general. We've been socialized and conditioned to take meds for everything..

There are a select few of us who have decided to forego meds.

For me, I made this decision based on my STATS--it's a uniquely personal decision that you need to make based on your type of tumor, and your risk of recurrence. Don't let anyone tell you, that you SHOULD or SHOULDN'T take meds, and for goodness sake, don't make a fear-based decision.

There's a great book I recommend called "What Your Doctor May NOT Tell You About Breast Cancer." It's the most thorough book I've found about what causes breast cancer, and it cites tons of research. Fact is, Tamoxifen DOES have tons of side effects and while it MAY reduce your risk of BC recurrence, it also increases your risk of uterine cancer and deep vein thrombosis.

When I looked at my risk of recurrence..it was 8 pct w/out Tamoxifen. 4 pct WITH it.

I can live with an 8 pct risk of recurrence. I am not jazzed about taking a drug that will give me tons of side effects and risk uterine cancer and stroke.

For me, my solution is to change my diet. I've done tons of research on all nutrition-based studies on BC. I found a study showing that patients who ate at least 5 veggies and fruits per day, and got 30 minutes of exercise per week, reduced their risk of recurrence SIGNIFICANTLY. And this was independent of their amount of body fat. In other words, obesity doesn't increase your risk, so long as you do those things. It's crucial you stick to it, though, and not deviate.

I've honestly never felt better in my life, and I'm not dealing with the side effects of a drug. I'm living a high quality of life.

Should I get a recurrence, or a metastasis--quite honestly, I'd rather have a short, but higher quality of life than spend the rest of my days injecting toxic medication.

Then again, I have no kids. However I do have a boyfriend and friends to stay alive for, but I'd rather be able to enjoy my time with them, even if it's short.

But that's just me.

Best regards.

Lula73

the average woman without genetic risk factors has a 12% risk of developing BC in her lifetime. This is regardless of how she ate and physical activity level. (Have you noticed how many women On here were eating clean, led active lifestyle and kept stress to a minimum and still got BC?) That means the average woman has an 88% chance of not developing BC. If you've been diagnosed, that 12% risk already hit you right between the eyes and the 88% did nothing for you. Do you really want to roll the dice again without a proven level of some protection? Everything we put in our bodies has potential for and often causes undesirable side effects (even foods & “all natural” products/herbs/supplements). Clean eating and regular physical activity do make the body feel good, no doubt. However there are no well controlled studies testing these theories (that in all honesty make logical sense)that are published in credible peer reviewed publications that show a statistically significant reduction in recurrence, mets and/or second primaries the way tamoxifen & AIs have. Yes it’s a personal decision, but all the facts should be taken into consideration before making it.

gb2115

Statistics drive me nuts. So I was diagnosed at age 38...my risk of developing BC at that point was mind-numbingly low (I can't remember the % but is extraordinarily low). But it happened anyway. And everyone pooh poohed my risk of developing lymphedema because I <<only>> had 3 lymph nodes removed (I was told the % risk was very low--RO even said "it won't happen"), and now I'm getting edema in my chest a year later. So it happened anyway. And I have a close family member who for all intents and purposes (statistically) shouldn't have developed a stage 4 recurrence 17 years after original diagnosis, but it happened anyway.

Anyway, I laugh in the face of statistics. I guess being on the wrong side of statistics so many times will do that for you...make you expect the worst and wish to prevent it.

Dustien

Good advice on asking friends (and fortunately I have some good ones) to watch for mood changes and let me know if they fear depression is setting in.  Husband will watch too, but I wouldn't exactly call him reliable as he is too close to the situation.  If things before this didn't go the way he liked, he'd use the excuse...you're getting worse as you get older (whether it be dealing with cleaning house, losing my keys, not putting things up where they belong...which I've always done, being late (also always), letting dishes pile up in the dish drainer, etc, etc...  He's the organized one, I'm the opposite...in otherwards my being myself will have him telling me I'm getting worse.  My friends, on the other hand, will be my helpmates there.

Also good advice on eating better... fruits and veggies every day.  Sure can't hurt and it's very doable.

I'm not against medications, but am also an opponent of less can be more.  I won't hesitate to get off the Tamox if I see my quality life being adversely affected.  I, too, would rather live a shorter good quality of life, then suffer simply so I can live longer.  We are all going to die, some sooner then later, but if we can't enjoy our lives while we live, what good is living later?  Of course, I'm 63 yrs old.  I would, most likely, feel totally different if I were a younger woman.  At my age I feel blessed that I'm still alive to enjoy life, as I know more then one whom I've called friends who have passed on at younger ages.  I do want to keep enjoying life, and if the Tamox helps me to do that, then great.  If Tamox makes life harder to live, then I'll stop using it and hope I go back to enjoying life for as long as I can.  

Thanks all, for being so open and honest about how you feel!  Now I'm going to go eat an Apple! ;-)

BarredOwl

DustieN:

At 63 years old, you are almost certainly post-menopausal. As such, formally speaking at least, another available option (instead of Tamoxifen) would be to take an Aromatase Inhibitor ("AI"; Letrozole (FEMARA); Anastrozole (ARIMIDEX); or Exemestane (AROMASIN)).

Again, you will be better positioned to weigh risk/benefit, and consider whether you'd like to try therapy after surgery, when you have more information. Hoping for the best possible pathology results for you.

BarredOwl

Lula73

“If things before this didn't go the way he liked, he'd use the excuse...you're getting worse as you get older (whether it be dealing with cleaning house, losing my keys, not putting things up where they belong...which I've always done, being late (also always), letting dishes pile up in the dish drainer, etc, etc... He's the organized one, I'm the opposite...“

So funny Dustien, you sound like me! You’d just have to ask your DH to give you the heads up if you start acting unlike your normal totally opposite than him self! I’m 44 with a 13 year old at home so not taking something is not an option for me in my opinion. Thankfully, as Barred Owl pointed out, there are multiple options if you’re post menopausal either naturally or surgically.

BarredOwl

Hi swg:

On the previous page, I had explained that the question of endocrine therapy entails a case-specific risk/benefit analysis, in which the potential absolute benefit of treatment is weighed against the risks of treatment, in light of one's personal risk tolerance (see Steps (a) through (d)):

https://community.breastcancer.org/forum/5/topics/862397?page=1#post_5146673

Your post provides a nice illustration of aspects of this process, in light of your personal risk tolerance.

Like you, many others are kindly sharing their personal experience, and illustrating the types of considerations and thought processes that were important to them, given their diagnosis, values and varying life circumstances.

As for being one of a select few, I'm not sure what statistics show about the proportion of eligible patients with invasive disease who decline to initiate endocrine therapy. Anecdotally, there are at least three on this thread (for various reasons personal to them). Of course, as you point out, it is one's own diagnosis, risk/benefit profile, and personal risk tolerance that should direct individual decisions.

Re "You will see that this board is mostly full of pro-meds people" etcetera. Such forces are real. Nevertheless, I believe it is possible for one to make an informed decision to choose endocrine therapy, without being or rendering oneself a brainwashed "pro-med" person socialized and/or conditioned by a monolithic industrial/medical complex to mindlessly down medications. (That being the very industrial/medical complex that has provided us with the main tools used for informed decision-making.)

Best,

BarredOwl

Dustien

Thanks Barred Owl ... Love your name and wanted to share a story.  One of your kin flew into my windshield around about 9PM last spring.  So sorry I hit the poor guy, but he just came out of nowhere. He hit hard and I thought I'd killed him for sure.  Just to be sure, though, I stopped the car and got out to check and there he was, standing in the middle of the road...a young barred owl with peach fuzz still pointing out through the feathers of his head.  I caught him up in a blanket, took him home and put him in a dog carrier for the night and the next day took him to a raptor rehabilitation place about 30 miles away.  Their vet set a broken wing and he was eventually released back into the wild.  

Thanks too, for the advice.  I am certainly pot mentapausal.  I had read about ace inhibitors, but they have some pretty serious side effects listed to.  Guess I'm just going to have to try one, then maybe the other if that doesn't work..then maybe nothing if side effects are too great.  Damn...just wish this hadn't happened.  Finally getting a breast MRI tomorrow (Insurance pre approval was the hold up) so now we can maybe get this show on the road!

Lula73..like the advice "You’d just have to ask your DH to give you the heads up if you start acting unlike your normal totally opposite than him self!"  LOL..that just might work.  And I agree with you..at 44 you have to shave off every % of risk you can.  Many and Much to live for at that age for sure.  Plus to many years ahead of you that a reoccurrence or a new cancer could rear it's ugly head in.  I'd not even be asking the question if I were 44!  I'd just be taking the darned medicine!

BarredOwl

🦉🦉🦉🦉🦉🦉

BarredOwl

Dustien

hahaha...read my "pot mentapausal" as "post menopausal".  Bad spelling AND slip of the tongue that one.  I was NOT referring to medical mary jane (though that's a whole new thread if you ask me).  Heading out now for the MRI....something to totally relax me might be cool right now!

Dustien

Back from MRI...no surprises, thank goodness.  Still just pesky 7mm IDC, Class 1.  I've decided on Breast Conserving Surgery with Brachytherapy and hopefully it will happen next week!  I just want to get back to LBC (Life Before Cancer) ASAP so this seems the best way to do that with no more risk then any other option.

Peregrinelady

Hi Dustien, I am glad there were no surprises on your MRI. I am curious about your doctor’s recommendations. I have a coworker close to your age whose tumor was 7 mm. She had a mastectomy, no radiation or chemo. She had two opinions that said no antihormonals. She didn’t say whether she had the Oncotype. Did your dr. give you a choice on whether or not to take the antihormonals?

ksusan

Congratulations on no surprises.

Dustien

Peregrinelady, I've not yet talked to my Dr. since I had the MRI only yesterday.  The first time we talked, when he first explained my cancer, he explained that my cancer had these little receptors (like gaping mouths) that loved to lap up Estrogen and Progesterone.  To starve any cancer cells that may be hiding from us, or that may be trying to form in the future, I'd need to take a daily pill for the next five years that would block those receptors.  I'm pretty sure he's not changed his mind about his wanting me to take Tamoxifen but I'll certainly be asking him after surgery and radiation is over.

I, too, had the choice of a Mastectomy with no radiation or a Lumpectomy with Radiation.  I chose the later since I felt it would be the choice that would get me back on my feet quicker and was told, and read, that both offer the same results health wise.

Peregrinelady

That’s why I am surprised that with a 7 mm tumor that she is not even considering the antihormonals. Have you been offered the Oncotype test?

Georgia1

Hi Dustien and I bet you feel better about making that decision. I was similarly diagnosed and did lumpectomy + three weeks of radiation + Tamoxifen. It was a grueling, stressful few months but I feel fine now and consider myself relatively lucky. Wishing you all the best, and the Lumpectomy Lounge thread may be helpful as you prepare for and recover from surgery.

BarredOwl

DustieN has not had surgery yet, and does not need an OncotypeDX ("21-gene") test at this point in time.

This test is designed to inform the question of whether to add chemotherapy to endocrine therapy in certain patients with hormone receptor-positive, HER2-negative invasive disease (endocrine therapy alone OR chemotherapy plus endocrine therapy). The results can inform understanding of recurrence risk profile (with Tamoxifen treatment alone), and in some cases, provides some insight into the potential benefit of adding chemotherapy.

In the large majority of cases, when the OncotypeDX test for invasive disease is recommended, the test is performed after surgery on sample(s) of tumor tissue obtained from surgical treatment. This is because the results from surgical pathology may affect eligibility for the test.

However, she should take up the question of an Oncotype test (or suitable prognostic test) with her Medical Oncologist after her surgical pathology results are available. This will include consideration of:

(1) the formal eligibility requirements of the commercial test provider (Genomic Health); and

(2) the more stringent recommendations regarding the test under applicable clinical consensus guidelines from NCCN and ASCO.

BarredOwl

Dustien

Thanks Barred Owl.  I didn't know about all that and it helps a lot to know what's coming.  I'll know what the oncologist is talking about now when he brings these things up after surgery.  ;-)  I surely hope I don't need chemo though.  I'm prepared to have to try the Tamoxifen but would be terrified of the chemo and Tamox.

Thanks, Georgia1, for the tip on the Lumpectomy Lounge.  I'm  heading over there now!  ;-)

Dustie

ButterflyLily

Hi Ladies,

I am new here and wanted to say hi and introduce myself. I just finished chemo and am starting Tamoxifen this week. My MO said she may let me stop it after 2 years to try to do an embryo transfer and have a baby (I did IVF right before I found out the BC). After that she wants me to go back on Tamoxifen. Just wondering if anyone knows of women who have taken a break from Tamox to have a baby and are OK now?

Thank you and hope everyone is having a nice weekend.

MelissaDallas

Butterflylily, here is a big thread on the subject

https://community.breastcancer.org/forum/27/topics...

msphil

hello I was on Tamoxifen for 5yrs and I am a 24yr Survivor this yr Praise God. idc stage2 0/3 nodes 3mo chemo (adriamycin cytoxin) before and after surgery Lmast got married I was planning our 2nd marriage. 7wks of rads. msphil

ButterflyLily

Thank you, Melissa! I checked the thread you posted and it's wonderful!

Have a question - how long do people normally wait to start tamox after finishing chemo? My MO said I can start whenever I want. Anyone know when a good time is to start?

Thanks ladies!

msphil

hello sweetie I am Praise God a 24 yr Survivor this yr Tamoxifen is well worth it to me I had some side effects But they out weighed me still here. Diagnosed at 42 while making wedding plans I found lump in shower and had 3 mo chemo before n after Lmast got married then 7wks with rads then 5yrs on Tamoxifen. I'm still here. Ms Phil God Bless Us All here.