Please Help! Tamoxifen or not??

gindugirl

I meet with my Onc next thursday and she wants my answer on whether I'm starting Tamoxifen or not.  I have declined it so far, but everyday I'm torn because all I keep reading is it decreases risk of recurrence by 50%.  I am a natural girl in all ways - meaning I don't like any kind of drug or artificial substances in my body.  I even birthed all my 3 kids, incl. my mono-di twins totally med/epidural free and baby b was breech. (That's how much I don't like drugs).  I exercise heavily 4 times a week and eat pretty clean (no refined sugar, juice 3-4 times a week, turmeric, 10,000 mg of Vit C a day, multi-vit, melatonin, brown seaweed extract, very low -to no alcohol, vegetarian, only organic).  But I'm only 41 and I have 3 children 5 and under, so I feel the pressure to make sure I do EVERYTHING I can do.  What scares me is I've been this healthy most of my life and I still got breast cancer; so then, will this lifestyle help prevent a recurrence?? I ask myself this everyday. 

My Onc says she mostly worries about my age…a lot of years left to develop a recurrence.  But my Oncotype came back at 16 (10% risk with Tamoxifen, 20% without).  My mammoprint was lower (10% without hormonal therapy). You can see in my sig I have a very early stage bc, so because of the low numbers, my Onc ultimately will support me declining Tamoxifen, but she would rather me at least try it.  I don't know what to do!  I feel very torn over this.  I REALLY don't want to take Tamoxifen, but is that stupid??  Please ladies, I would love your insight and opinions on this.  Pro and con, I really would love to hear it all.  Thanks!  

SelenaWolf

I - like you - was very active all my life, ate well, kept my weight down and preferred not taking pills, but I still developed breast cancer at 50.  I've come to think of it like this: while living a healthy lifestyle may not have prevented breast cancer (or prevent a recurrence in the future), it IS good for you overall to stay as healthy as you possibly can.  That means continuing to follow a good diet and getting enough exercise moving forward, so that you can be the best you can be.

Only you can make the decision as to whether- or not tamoxifen is right for you.  If you're worried about the side effects, not every women suffers debilitating side effects from this drug (I am one who is doing fine on it) and it may be worth trying to see if you are one of them.

My situation is slightly different from yours (I was Stage 2 with one positive node), so - for me - tamoxifen was a no-brainer.  My biggest risk of recurrence will not be local, but metastatic and - with tamoxifen - I can lower that risk.  Your decision (whichever way you chose) will be based on factors that are important to your situation, as well as whether or not the benefits of taking it (reduced recurrence) are worth the risks (side effects).

lisa137

I never liked taking drugs, even for headaches, either. And my situation is also very different from yours in that I was stage IIIc, so NOT taking *something* would be playing with fire and scare me to death.

That said, obviously you are a little afraid NOT to take the tamoxifen, or you wouldn't be posting asking for input. I can't tell you what to do, but in your situation what *I* would do is try the tamoxifen and see how I felt. If I felt less afraid, less apprehensive, and did not have debilitating side effects, I'd keep taking the tamoxifen. If I didn't feel less afraid or apprehensive after trying it, and/or if my side effects were bad, I'd quit. Just because you try it for a little while doesn't mean you have to keep taking it. Stopping is an option.

I was only on tamoxifen for 2 or 3 months before I had my hysterectomy and switched to Femara, but during that time I had no side effects at all. (None so far on the Femara either, knock on wood.)

gindugirl

Thank you lisa and selena for your stories.  It is good to hear from ladies who have not experienced side effects; SE's are obviously a big worry for me.  I was thinking of at least trying it, but then I came across an article (which I have to find again to reference) that talked about immediate and irreversible changes to your uterine lining the minute you take Tam.  It was an article which referenced a study, but honestly I'm not too sure where the study came from and exactly how dependable.  I've been searching scientific journals trying to find an actual long term study of women who took tamox, for even a short period of time and any possible long term health effects.  The only thing I've found are the studies we've all heard about, where they show 50% decrease in recurrence after 5 years.  The studies for 10 years are just finishinig now (which is why some onc's are now saying you should stay on it for 10 years, b/c once you stop taking you're no longer "covered").  But I couldn't find any long term studies where they followed women 10, 15, 20 and 30 years after completing drug and what the health implications were.  These studies don't seem to exist and that is what I'm concerned about even more than side effects.  I don't want to take something, even for a week, that could potentially create future issues (way down the line) for 10% more reduction in recurrence (b/c of my onc score).  Does that make sense?  I'm trying to weigh the risks/benefit of the drug, but without long term studies, how can I do this.  Hence my dilemma

If anyone has any links to studies they've found helpful, I'd really appreciate it!  

BrooksideVT

Grindugirl, I'd look at it sort of as a reverse bird in the hand vs. bird in the bush.  The breast cancer we all know we have.  The risk reduction taking tamoxofen or an aromatase inhibitor is exhaustively and scientifically proven.  The very small future risk of uterine issues is also well proven.  The cancer is (was?) personally real and present.  The small risk of uterine issues is not only way, way in the future, but statistically highly unlikely.  The opportunity to reduce your/our risk of recurrence is right here, right now, and very, very present.  And somewhat time sensitive, it seems.

Like you, I had natural births (well, two of three), ate a very very healthy diet, and avoided every possibly avoidable toxic substance.  Maybe this slowed the development of my cancer, but it sure did not prevent it.  Nor did it do so for any of the other super healthy  people who post on these boards. My feeling is that if all the highly hyped, and all the practically secret, natural remedies did not prevent cancer, they sure as heck are not going to cure it.  I'm totally invested in my anti-hormonal.

Ridley

gindugirl -- If you decide to try it, you may want to try 10 mg first and then move up to 20 mg.  Also, I switched to taking 10 mg twice a day vs. 20 mg once a day, and (knocking on wood), I think my side effects are reduced.

Are you worried about impacts on the uterine lining because you would like to have more children (there is a thread for women that come off tamox to have children, so that might have some info for you) or because of the risk of uterine cancer?  If the latter, my understanding if that the increased risk is quite low (having said that I just had an endo biopsy last week).

I had a low oncotype (so no chemo), but lots of low grade cancer, so I feel even with the side effects I'm dealing with, I really need to take this drug because of the risk reduction benefits.

As someone else mentioned, you can always stop taking it.

Good luck with your decision.

gindugirl

Ridley and Brookside - good points all around.  I'm pretty sure I don't want anymore children, but my husband and I have had a hard enough time getting our sex life back after our 3 children. Additionally, my hormones have been pretty crazy from the twins and breastfeeding them both for so long  -was bfing when I found the lump .  So I guess I'm also worried about the menopausal symptoms, dryness, etc.  But maybe I'll be one of the lucky ones and not have SE's.  I will bring up the idea of splitting the dose.  I didn't know you could do that.

Oh and 98% of my cancers cells are ER+.  That's pretty high, which means they'd respond more to Tamoxifen correct?

abigail48

& vermont. did you also breast feed your young?  in my personal data bank most of the women who got the cancer had children, but then most women do.  did they breast feed, don't know for most anyway.  

Ridley

gindugirl - when I researched splitting the dose, I found out that is how they used to prescribe tamox and moved to 20 mg once a day as a more convenient way to take the drug. NIH did a bio equivalence study that confirmed you can take it either way - just some info in case your onc raises any issues,

gindugirl

Ridley - thx for that info!  I'm def going to bring it up to her.  You have such a low oncotype so TAM 'halfs' your percentage by how many??  I know you said you feel pretty strong about the risk reduction, but you also mentioned an endo biopsy (I hope that turned out ok btw).  Are you ever on the fence about Tamoxifen?  And if not, how long do you plan on taking it?

Anyone else out there want to weigh in??  I haven't heard from anyone who is totally declining it.  Are you out there??  Please chime in.  

Thx!!

gindugirl

Abigail - Supposedly breastfeeding does reduce your risk of getting cancer, but only if you breastfeed before 30 years old, I believe is the number. It's that or 35, I can't remember the exact age where you get the benefit.  I didn't have my first child until 36 yrs old, then natural identical twins at 38.  I exclusively breastfed all my children until 20 months. But my Onc believes my slow growing cancer has been sitting in my breasts long before getting pregnant.  It was prob the twin pregnancy that made that estrogen rage and turned my DCIS into IDC, because there was def no lump until after twins were born.  Also, I was working long hours, had a high risk pregnancy (where I had to eat massive amounts of food to support a mono -di twin preg), and a toddler at home... so my stress levels were seriously high.  Those are all the factors I think turned my DCIS into IDC.  But that's just my theory and my gut feeling…no proof.    

gindugirl

Sorry for so many posts, but I just found this while researching:

"Research shows that pregnancy before age 30 is the most protective against breast cancer. Two-thirds of breast cancers are estrogen-positive, meaning they grow during pregnancy, so the older you are during pregnancy, the more chance there is that there are cancer cells present that could respond to the gestational estrogen flood. “When you’re pregnant there’s a strong cocktail of hormones happening,” says Weiss. “Breast cancer cells can marinate in that cocktail and have accelerated growth because they’re so hormonally sensitive.”

Breasts don’t actually finish growing until a woman has completed a full-term pregnancy — the cells mature during gestation. “A full-term pregnancy causes breast cells to get ready to breastfeed,” Weiss explains. “And it’s breastfeeding that makes the cells finish maturing.” The good news is that breastfeeding is protective against breast cancer for every woman, no matter how old she is when she has a child.

Another risk factor for older first-time moms, Weiss notes, is “the preciousness” of the pregnancy. “If it took forever for an older mom to get pregnant, she may not want to give up the pregnancy since she’s worked so hard to bring new life,” she says. But the mom’s life may be threatened by cancer that’s growing faster because of the hormones involved in gestation."- Dr. Marisa Weiss

Ridley

Gindugirl - the issue for me is that I had so many areas of cancer - 8 invasive lesions counted by one hospital's pathologist and 11 by another's ( there is some judgment as to whether they count them separately if they are close together.). There is not a lot of research on multi-focal cancer. My onc believes my recurrence odds are higher than someone with one lesion and an onco of 8, but by how much is unclear. So for me, so far it has never been a question of if, just one of how to best deal with any pesky side effects.

I don't have the results of the endo biopsy yet - hoping that is B9!

My onc says I will be on something for 10 years. I'm not going to worry about that yet because who knows what research will have discovered by then. 10 years ago, they weren't doing oncotypes,

kimag

hi Gindugirl, I feel your pain.. i have 3 kids as well and would love to do all I can to see them grow but I am scared to take Tamo, and so far have refused it. My MO did not feel strong about me taking it and said benefits and risks equals in my case however I got confused now, I have finally registered to adjuvanonline calculator to see what the docs see in calculating and it does not match what I heard from MO ... he said my 5 years risk is 3% and it covers relaps and mets... but adjuvant shows 18%... my tumor was small 2.5mm and adjuvant does not account for that and I am now frustrated as I would not see MO any more - unless unlucky relaps or mets.. he said there is no need.

Still reading about tamoxifen this is what I have found - and this article is from 2014 so not old one:

http://www.jcancer.org/v05p0151.htm

To be clear I am not set in the opinion that Tamo is all devil and should be avoided by all cost - NO it for sure works for many and helps, keeps stable stage IV patients and so on but it comes with serious SE it is not vitamin C so I just want to make sure I understand risk/benefit % in my particular case. According to info from MO, my risk is 3% , Tamo benefit max 1.5% lower risk (50%), risk for endo cancer is around 1% per year (I could not find 5 years stats to match bc stats ) as well as strokes, thrombosis etc. So if my onco is right with my risk he quoted i get 1-1.5% benefit from Tamo it looks for me like it is equal exchange for lowering BC risk I get same % risk for uterus cancer or other crap.... I am still spending sleepless nights thinking what is the best choice that I would not regret... and I understand your hesitation to try and see - I too am afraid of long term SE which are rarely followed up. I may tolerate Tamo well when taking it and then end up with some serious issues later... for example I have tolerated chemo years back well enough, radiation too now I am facing potential heart failure problems and I am 37! ANd I know we are not stats and math there is more to it.

Cee67

Hi Gindugirl,

I have Stage 4 cancer and I have declined Tamoxifen. I read all the threads with the women who take it and get back abnormal pap results and have to get uterine biopsies and then wait in fear that those will come back positive. It's just so much added stress on top of a crappy disease.

Some are going through this frequently. And when I was told that those biopsies are really painful (and I know my ins would never pay to put me out), I was too afraid to try it.

Tamox also messes with eyesight - I can't seem to find cancer treatments that don't - and I have a severe visual impairment already that I needed to consider.

I only read this ONCE - I think it was here in a thread about Tamox, that a woman claimed that it caused (permanent) vaginal atrophy.

I was going to try it, but some women don't get the SE's right away - sometimes it takes years. Some women who take it with no issue, then get SE's that are just as brutal when they want to go off it. All in all, it sounds like pain and weight gain in a bottle.

Please don't let your MD rush you. If you need more time to think it over you should have that. I filled my bottle of Tamox, just to have it in case I changed my mind. Maybe you could say you want it and then think about it some more.

If only BZA (Bazedoxifene) would be approved here. I've heard it doesn't come with a lot of SE's.

tgtg

Gindugirl--I am almost at the two-year mark following my diagnosis and lumpectomy/radiation, and I absolutely declined to take Tamoxifen or an AI. After doing a lot of research in med journals and conferring with doctor and researcher friends, I decided that the risks of taking either drug are not worth the gain in my case (grade1,stage1,0 nodes, Oncotype #12, and 71 at diagnosis/treatment). The long-term co-morbidity risks of tamoxifen (stroke, clots, etc.) are a greater threat to me than those of a BC recurrence. Besides it seems from the research that hormonal therapy is protective basically while it is being taken--hence the increase from 5 to 10 years of therapy?--and recurrence, if it happens, is just happening later.

So I opted to lose weight (had put on 12lbs in the year before a mammo detected my tumor) and keep my BMI under 25, eat even more healthily than before, keep up and intensify my already dedicated exercise schedule, relax and laugh more (had been under much stress in the year before diagnosis too), and get plenty of vitamin D the old-fashioned way, from sunshine. (My dermatologist wholeheartedly approves, by the way, since I do no more than 15 minutes of unprotected sun a day, and not between 11 and 3.) And I am committed to being vigilant and faithful re check-ups and mammos. So far so good--including my two-year post-surgery mammo.

What is really needed is a study of those of us who decline hormonal therapy. But who would sponsor such research? Certainly not the drug companies who pay for the research and development and the clinical trials of their drugs! Until such a study is done, those of us who are skeptical about hormonal interference must follow our hearts and minds and buck the pressure from too many in the medical establishment, especially the drug companies who conveniently (for them) offer more drugs to counteract the transient side effects of tamoxifen and the AI's.

Good luck with your decision. Of course each woman's case is different, so each decision is different. But being exposed to the variety of reasons for others' decisions should help put yours in perspective for you. TG

Shira

I declined Tamoxifen but it was just what felt right to me at the time. I was very overweight, and eating lots of junk food, so in my case it felt like those were big factors, and changing them (which I did!) would help a lot and be most important.  If I'd been eating healthy and in good shape, then I'm not sure I would have felt comfortable making the same decision (NOT saying that healthier people should take it, just that being unhealthy felt like the biggest cause of my cancer, true or not).

Other things that swayed me away from it was that they said I'd need to take it for 10 years, so it seemed like it really didn't work if it was needed for so long (again, just my thought process). Some people also gain weight from it, and I didn't feel I could take that chance. I'd also read that it is more effective for some people and maybe not as effective for others (fast metabolizers and slow it might have been called?), but the Oncologist said there wasn't proof that tests could determine that, and/or that it was true, but it still factored in to my decision.

Side note for context, I also declined radiation, but have completely changed how I eat, and see a Naturopath.  And I had lots of pressure to go the route that I did (had pressure the other way as well, but less intense). I'm also only a year past my diagnosis and surgeries.

annika12

Im 45 , 43 at diagnosis !! Always been healthy and all natural !! 3 kids before 30 and breastfed all 3 ( had them at home) . My first IV was at my MRI..... hadn't seen my doctor for 17 years other then regular check ups. Healthy people get cancer The cancer I had (refuse to call it my cancer) tested neg for hormones but 3 docs told me to take tamox. So I agreed to try, I feel better then before, no SE been on it for 10 months and told my doctor we will re evaluate every year....not in 10 years !!! YOU have to be comfortable with your decision either way good or bad. I believe for ME it makes sense to keep hormones at bay to make it as hard as possible for BC cells to grow in my breasts !!

kimag

Shira, Tgtg - i like the way you try to define sources of cancer as a first step of decision what next. .. I wondered about that too, if , again if as we cannot know for sure what exactly caused it in the first place, but in my case it seems and MO thinks that too my cancer was radiation induced - so I wonder since I had mastectomy and only few breast cells left (as they cannot scrap the skin to 0) then how much Tamo would benefit me... I had some + kg as I never quite regain my pre pregnancy weigth from the 1st child, and then all together 3 pregnancies in each time extra kg's but now I am again 52 kg as long long time ago , I try to eat better, much more veggies, much less meat, especially red and just have to work on exercises part... so I wonder how much estrogen was an issue in my BC, after all i had 2 breasts.... only one got sick, and almost entire breast in DCIS with 2 focal small invasion of IDC.... so for me it is radiation induced with er positive , maybe I am wrong but that make more sense, and i did hear about different people metabolizing tamo differently too... but as always some dark side is still wishperig in my ear what if reoccurence happens what if mets would I blame myself? With young kids I feel responsible to do my best and ii is so hard to know for sure what it that best way

gindugirl

Thanks for such great replies ladies! I'm sorry I haven't been back to the boards in so long. I've had a very stressful two months and I really need to get that under control b/c I feel this is all a moot point if I can't remove the stress.

So I saw my onc and got the Tam prescription filled 'just in case.' But I haven't filled it and at this point I don't think I will. I'm following my inner voice on this one, for I feel like it's been leading me the best thus far. Each day or so I kind of check in with myself and my 'higher self' - sorry if that sounds whacky to some people, it's just how I explain my spirituality. And so far I get a pretty strong NO on Tam. But I'm also open to changing if suddenly I hear a resounding 'YES,' or more research comes out

kimag- it sounds like your risk/benefit equation is answering this one for you pretty well. I agree, a 1.5% lowered risk doesn't seem worth it. But I'm interested in this website you were talking about. What is that? I've never heard of.

The other update is I found some weird swelling/lump on the front of my throat. My internist didn't really know what it was, but felt it could be a cyst, but suggested I get an MRI just to be safe. Now I'm finding myself freaked out and paranoid that this is actually a metastasis. That seems crazy to show up on my neck, but getting cancer in the first place seem like the furthest from possibilities. So nothing is out of the question it seems. I hope it's nothing.