to take or not to take Femara beyond 10 years

ohilly

Well, I have an appointment to see my oncologist on June 24.  I had Stage I early stage bc, and am BRCA I.  I had a double mastectomy (one side for cancer, the other a preventive mastectomy).  On July 15 it will be 5 years that I am cancer free and taking Femara.  No one seems to know how long you should take Femara, but some recent research showed that Tamoxifen has a better survival benefit if you take it for 10 years.  The last I heard they are thinking this may also be true of Femara - which also gets rid of Estrogen but works in a different manner - but I believe no one knows for sure.

 

I am trying to determine whether or not to continue Femara.  Has anyone out there been in a similar situation, and what decision did you make and why?  The only really bad side effect I have had from the Femara is depression.  I have to be on anti-depressants all the time, which mostly - but not completely - control the depression.

 

I would appreciate any advice,

 

Ohilly

 

 

 

RozHopkins

Hi

Yes, 10 years is being suggested for the taking of Tamoxifen.   My mum took Tamoxifen for five years and it came back, seems to happen too often.  I have just changed from Tam to Arimadex and will take this to the ten year mark if suggested as it will take me beyond any lurking high level estrogen years, I HOPE.  I am Estrogen positive.  Oncol appointment is next week so will ask if this just applies only to Tam. And get things a little clearer.

Josie21

Hi Ohilly

Congratulations on being NED for 5 years!!  I am 5 years out in December.  I did tamoxifen for 2 and a half years and then aromasin.  My oncologist told me in April that there are no studies yet that suggest we should take AI's longer than 5 years.  Tamoxifen is definitely ten years now, but no word yet on AI's.  She did say that don't be surprised if her answer changes by December.  I really am scared to go off aromasin.  I have side effects from it, but I can deal with those.  I don't want cancer back.  I did have a hysterectomy 2 years back, but aromasin makes me feel safe.  I was wondering if I could go back on tamoxifen after 5 years.  Who knows.  It's all a mystery.  

I hope your oncologist gives you a definitive answer on the 24th, but I bet she says it's your choice whether you want to continue with Femara or not.  I've noticed that whenever doctors are not sure, they put the decision in our hands.  Boy do I hate that!  

Well, congrats again!!  Please let us know what your oncologist suggests.  

Hugs,

Ginny

Double Whammy

Josie21 said:

Hi Ohilly

Congratulations on being NED for 5 years!!  I am 5 years out in December.  I did tamoxifen for 2 and a half years and then aromasin.  My oncologist told me in April that there are no studies yet that suggest we should take AI's longer than 5 years.  Tamoxifen is definitely ten years now, but no word yet on AI's.  She did say that don't be surprised if her answer changes by December.  I really am scared to go off aromasin.  I have side effects from it, but I can deal with those.  I don't want cancer back.  I did have a hysterectomy 2 years back, but aromasin makes me feel safe.  I was wondering if I could go back on tamoxifen after 5 years.  Who knows.  It's all a mystery.  

I hope your oncologist gives you a definitive answer on the 24th, but I bet she says it's your choice whether you want to continue with Femara or not.  I've noticed that whenever doctors are not sure, they put the decision in our hands.  Boy do I hate that!  

Well, congrats again!!  Please let us know what your oncologist suggests.  

Hugs,

Ginny

Who the heck knows, anyway?

  I really choose to believe I don't have any more cancer cells to keep estrogen away from, but there is no way to know for sure.  Of course, I could develop a new cancer and that's a different story I guess.  I'm backwards from just about  everyone else because I switched from Arimidex to Tamoxifen in January. I didnt have any side effects from Arimidex, but I do notice I no longer have joint pain which I attribtued to getting older, not Arimidex.  Oncologist said Tamoxifen would be good for my bones since I really don't want to take a bisphosphonate.  So back to the recommendation of taking Tamoxifen for 10 years - my onc said that was the recommendation but she doubted many patients would want to do it.  She said the jury was still out on the aromotase inhibitors.  How's that for a non answer?

So Ohilly, you get to be our test case and let us know what is recommended for you and what you decide.  Whatever they tell you, it will probably change in 2 1/2 years when I hit the 5-year mark.  And what about the people who reached their 5 year mark a couple of years ago?  Should they start again?  

Congratulations on 5 years!  Something is working.  Sorry I can't be more helpful on your question, I'm not at 5 years yet and it's still a new recommendation. 

Suzanne

Rague

I  was told over  a year ago

I  was told over  a year ago that I'd be on letrozole/Femara forever because being IBC, I'm high risk.  

SEs are not an issue for me.

Winyan - The Power Within

Susan

Double Whammy

Rague said:

I  was told over  a year ago

I  was told over  a year ago that I'd be on letrozole/Femara forever because being IBC, I'm high risk.  

SEs are not an issue for me.

Winyan - The Power Within

Susan

That makes sense to me, Susan

From what I understand, the study that deemed 10 years on Tamoxifen important incorporated patients with all stages of breast cancer at diagnosis, and all types of estrogen receptor positive breast cancers and it did not distinguish stages, types, grades, etc.  As Susan said, having a high risk for recurrence does make our docs think and treat us more aggressively and that seems to make some sense. 

Ohilly, I do have a suggestion.   Ask your oncologist to explain to you what "statistically significant" means in this study.  I attended a lecture a while back and what I came away with was that their definition may have been what researchers call statistifically significant, but in my mind it wasn't all that much.  Some patients did recur within the second 5-year period, just not as many as those who stopped at 5 years and that difference between the group that stopped at 5 and recurred and the group that continued for 10 and recurred is what they are referring to.  So did Tamoxifen protect them during the first 5 years, or were their cells just lazy?   Afterall, there was some recurrence in the first 5 years in spite of Tamoxifen as well as some recurrence during that second 5-year block.  And those that didn't - what about them?  They did not recur in the first 5-year period nor in the second 5-year period.  Still NED at 10 years.  Was it the Tamoxifen? 

I just wish this was a more exact science.  I honestly do not know what I'll do at that 5 year mark.  Maybe take it one year at a time?   I am committed to doing this for 5 years.  Beyond that, I'm just not sure, but will cross that bridge when I get to it. 

Suzanne 

lynn1950

To Arimidex, or not to Arimidex

Ah, that is the question.  Ohilly, it is good to hear from you. My five years will be up in October and I have been told the same thing as you by my oncologist.  My greatest side effect, like you, is depression, which has been a very rough ride.  I have never tried switching AI's.  Have you?  I was really looking forward to getting off of the little white pill, but not at the risk of recurrence.  xoxoxo Lynn

Lynn Smith

So 10 years now

So 10 years now for Tamoxfin.I remember reading that.So looks like 6 more years  for me.It will be 4 years taking tamox this Dec for me.I don't take many pills Thank Goodness but always like to take less.   

My friend took tamox 5 years then another drug for 5 years.Now she says there's nothing but wishes there was because she would want it.AND she's like me,Hates taking pills.She's a 19 year survivor.Stage 3 cancer and had a lumpectomy.Her doctor said no difference in lumpectomy than masectomy.Another friends doctor said the same thing and she was Stage 3 with a fast growing breast cancer. I was Stage 0.My doctors said lumpectomy and what was my choice. 

If my doctors say another 5 years I will go for it.I'm 66 but want to live to be in my 90's. I have aunts who have lived that long and one is 96.She's living by herself in a retirement village.  She looks good too for her age.

I'll take tamox  for another 5 years.Don't want years from now to say "I wish I had" Do what your doctor recommends

Lynn Smith

Lynne P

Rague said:

I  was told over  a year ago

I  was told over  a year ago that I'd be on letrozole/Femara forever because being IBC, I'm high risk.  

SEs are not an issue for me.

Winyan - The Power Within

Susan

Congrats on the 5 years!

Congrats on the 5 years!

CypressCynthia

These are hard decisions.  My

These are hard decisions.  My younger sister has been on femara for about 10 years now.  She and her onc decided that it was reasonable for her to stay on it.  I am fighting lung, bone and liver mets. Sister has had local recurrence, but is doing well.  My older sister had Stage 1 IDC and had bilateral mastectomies, but no other treatment.

We have a terrible history and everyone has to decide for themselves.

I do wish the option of 10 years of tamoxifen had been around when I was on it.  I took it for 7 years and had a recurrence 18 years after initial diagnosis (1987). 

Can't help but wonder that if I had stayed on some type of hormone therapy, maybe my cancer would not have reared its ugly head again. 

ohilly

lynn1950 said:

To Arimidex, or not to Arimidex

Ah, that is the question.  Ohilly, it is good to hear from you. My five years will be up in October and I have been told the same thing as you by my oncologist.  My greatest side effect, like you, is depression, which has been a very rough ride.  I have never tried switching AI's.  Have you?  I was really looking forward to getting off of the little white pill, but not at the risk of recurrence.  xoxoxo Lynn

depression/Femara

Nice to hear from you, too, Lynn.  An update on my depression:  I took Lexapro for a long time, but after awhile it didn't seem to be doing anything, so I got off.  I was fine for about 6-8 months, but then the depression came back and I had to get back on the Lexapro again.  Now I am 'mostly' okay, but even on the Lexapro still have bouts of depression.  Depression runs in my family, so it is probably not all due to the AI, but I do think the AI makes it worse?  What about you?  Do you find the AIs are making your depression worse?  My psychiatrist said I could add Abilify, Seroquel, or Buspar to the Lexapro, but each one seemed to have terrible side effects.  Are you taking something for your depression?

 

The thought of being on the AI for another 5 years also makes me depressed, but I will probably do it because my fear of recurrence is greater than my having to deal with depression.  Seems like there is no good choice.

 

Ohilly

ohilly

lynn1950 said:

To Arimidex, or not to Arimidex

Ah, that is the question.  Ohilly, it is good to hear from you. My five years will be up in October and I have been told the same thing as you by my oncologist.  My greatest side effect, like you, is depression, which has been a very rough ride.  I have never tried switching AI's.  Have you?  I was really looking forward to getting off of the little white pill, but not at the risk of recurrence.  xoxoxo Lynn

your question

Lynn, I realize I didn't answer your question.  No, I never tried switching AIs.  I am too afraid to, for fear the side effects would be even worse.  The devil you know...

 

Ohilly

lynn1950

ohilly said:

depression/Femara

Nice to hear from you, too, Lynn.  An update on my depression:  I took Lexapro for a long time, but after awhile it didn't seem to be doing anything, so I got off.  I was fine for about 6-8 months, but then the depression came back and I had to get back on the Lexapro again.  Now I am 'mostly' okay, but even on the Lexapro still have bouts of depression.  Depression runs in my family, so it is probably not all due to the AI, but I do think the AI makes it worse?  What about you?  Do you find the AIs are making your depression worse?  My psychiatrist said I could add Abilify, Seroquel, or Buspar to the Lexapro, but each one seemed to have terrible side effects.  Are you taking something for your depression?

 

The thought of being on the AI for another 5 years also makes me depressed, but I will probably do it because my fear of recurrence is greater than my having to deal with depression.  Seems like there is no good choice.

 

Ohilly

Depression

I have tried different anti-depressants; Zoloft with a kicker of Viibryd and  Abilify is what I take now.  Depression doesn't run in my family and I didn't really experience major depression until I started taking Arimidex.  I'm not sure if the BC sent me into the spiral and the Arimidex contributes to it, or if the Arimidex is the main cause.  I haven't read of too many people claiming depression as a side effect of taking Arimidex.  It is so hard to know.  I was really looking forward to getting off of the Arimidex, but I know I'll keep taking it as long as it is effective in keeping the breast cancer at bay.

 

DebbyM

ohilly said:

depression/Femara

Nice to hear from you, too, Lynn.  An update on my depression:  I took Lexapro for a long time, but after awhile it didn't seem to be doing anything, so I got off.  I was fine for about 6-8 months, but then the depression came back and I had to get back on the Lexapro again.  Now I am 'mostly' okay, but even on the Lexapro still have bouts of depression.  Depression runs in my family, so it is probably not all due to the AI, but I do think the AI makes it worse?  What about you?  Do you find the AIs are making your depression worse?  My psychiatrist said I could add Abilify, Seroquel, or Buspar to the Lexapro, but each one seemed to have terrible side effects.  Are you taking something for your depression?

 

The thought of being on the AI for another 5 years also makes me depressed, but I will probably do it because my fear of recurrence is greater than my having to deal with depression.  Seems like there is no good choice.

 

Ohilly

I've never taken any hormone

I've never taken any hormone therapy or antidepressants.  I do want to offer a big congratulations on the 5 years!  That's the best!

Hugs, Debby

SIROD

My Vote is Not to Risk A Recurrence!

My vote would be to stay on.  I used hormonal drug therapies for 18 years.  I have widespread lung, pleural and rib mets.  I am now out of option on hormonal as the cancer cells have figured them out.

Why risk a recurrence.  Nothing fun, nice about it, in fact it's pure hell.

Good luck making your choice.

Doris

Kylez

SIROD said:

My Vote is Not to Risk A Recurrence!

My vote would be to stay on.  I used hormonal drug therapies for 18 years.  I have widespread lung, pleural and rib mets.  I am now out of option on hormonal as the cancer cells have figured them out.

Why risk a recurrence.  Nothing fun, nice about it, in fact it's pure hell.

Good luck making your choice.

Doris

I wish you all the luck with

I wish you all the luck with your decision.  I know it isn't an easy one. 

Keep us informed of what you do.

Hugs, Kylez