slow growing indolent cancer

bae5670

Anyone have a recurrance of this type of HR positive cancer slow growing cancer that is hard to trace?

CypressCynthia

I was originally diagnosed

I was originally diagnosed with ER+, PR+ Stage 3 back in 1987.  I was in remission until 2009, when I was diagnosed with mets to the ribs.  I am currently back in remission in doing well.  I am not sure what you mean by "difficult to trace" but there are a few of us here with a "chronic" type of breast cancer.  This February is 26 years since my first diagnosis!

bae5670

CypressCynthia said:

I was originally diagnosed

I was originally diagnosed with ER+, PR+ Stage 3 back in 1987.  I was in remission until 2009, when I was diagnosed with mets to the ribs.  I am currently back in remission in doing well.  I am not sure what you mean by "difficult to trace" but there are a few of us here with a "chronic" type of breast cancer.  This February is 26 years since my first diagnosis!

Thank You

Hi and thanks your your response.  Nothing ever showed up in blood work or tumor marker tests. CT scan showed a few area's of concern so we did f/u with pet/ct scan.  The ct/pet scan showed a very tiny area that the ct scan didn't in my sacrum with a very mild SUV of 1.6.  I just had another ct scan and everything shows stable.  Dr. said we are going to be in wait and see mode since nothing is big enough for a biopsy and tumor marker tests not working. We shut down my ovaries and i have started hormone therapy since the cancer is 100% hormonal.  I go back in three months and he will order another round of scans. He said my cancer is very slow and sluggish, quiescent.  I feel like I'm sitting around waiting for the water to boil!.

CypressCynthia

bae5670 said:

Thank You

Hi and thanks your your response.  Nothing ever showed up in blood work or tumor marker tests. CT scan showed a few area's of concern so we did f/u with pet/ct scan.  The ct/pet scan showed a very tiny area that the ct scan didn't in my sacrum with a very mild SUV of 1.6.  I just had another ct scan and everything shows stable.  Dr. said we are going to be in wait and see mode since nothing is big enough for a biopsy and tumor marker tests not working. We shut down my ovaries and i have started hormone therapy since the cancer is 100% hormonal.  I go back in three months and he will order another round of scans. He said my cancer is very slow and sluggish, quiescent.  I feel like I'm sitting around waiting for the water to boil!.

Just FYI, tumor marker tests

Just FYI, tumor marker tests are not considered a good diagnostic tool.  Many oncologists still use them (mine does) because they can be helpful in determining a diagnosis or a response to treatment.   My markers were not initially elevated with my mets, but 3 years later, they were.

I would say, in my own experience, there is not a test that is absolute.  Serial testing is often very helpful because changes can really begin to be seen.  Biopsy is usually the most helpful, but if you don't have enough for a biopsy or if the lesion is in a difficult to reach place, you have to continue waiting and watching.  And stable with cancer is a wonderful thing!

bae5670

CypressCynthia said:

Just FYI, tumor marker tests

Just FYI, tumor marker tests are not considered a good diagnostic tool.  Many oncologists still use them (mine does) because they can be helpful in determining a diagnosis or a response to treatment.   My markers were not initially elevated with my mets, but 3 years later, they were.

I would say, in my own experience, there is not a test that is absolute.  Serial testing is often very helpful because changes can really begin to be seen.  Biopsy is usually the most helpful, but if you don't have enough for a biopsy or if the lesion is in a difficult to reach place, you have to continue waiting and watching.  And stable with cancer is a wonderful thing!

Thanks again.  Yes, I agree

Thanks again.  Yes, I agree that stable with cancer is good and now that I have started anti-estrogen meds. and shut down my ovaries I hope that it continues to stay stable.  Do you have any idea how long AI's take to work?  Also, I noticed you changed your meds. Did you become resistant to the first round?  I know resistance is an issue that eventually shows up. Do you how long resistance to a med usually takes or is it different with everyone? My guess is it's different for everyone.  Anyway, thanks for sharing your story with me.  It really did give me hope.

bae5670

CypressCynthia said:

Just FYI, tumor marker tests

Just FYI, tumor marker tests are not considered a good diagnostic tool.  Many oncologists still use them (mine does) because they can be helpful in determining a diagnosis or a response to treatment.   My markers were not initially elevated with my mets, but 3 years later, they were.

I would say, in my own experience, there is not a test that is absolute.  Serial testing is often very helpful because changes can really begin to be seen.  Biopsy is usually the most helpful, but if you don't have enough for a biopsy or if the lesion is in a difficult to reach place, you have to continue waiting and watching.  And stable with cancer is a wonderful thing!

Thanks again.  Yes, I agree

Thanks again.  Yes, I agree that stable with cancer is good and now that I have started anti-estrogen meds. and shut down my ovaries I hope that it continues to stay stable.  Do you have any idea how long AI's take to work?  Also, I noticed you changed your meds. Did you become resistant to the first round?  I know resistance is an issue that eventually shows up. Do you how long resistance to a med usually takes or is it different with everyone? My guess is it's different for everyone.  Anyway, thanks for sharing your story with me.  It really did give me hope.

bae5670

CypressCynthia said:

Just FYI, tumor marker tests

Just FYI, tumor marker tests are not considered a good diagnostic tool.  Many oncologists still use them (mine does) because they can be helpful in determining a diagnosis or a response to treatment.   My markers were not initially elevated with my mets, but 3 years later, they were.

I would say, in my own experience, there is not a test that is absolute.  Serial testing is often very helpful because changes can really begin to be seen.  Biopsy is usually the most helpful, but if you don't have enough for a biopsy or if the lesion is in a difficult to reach place, you have to continue waiting and watching.  And stable with cancer is a wonderful thing!

Thanks again.  Yes, I agree

Thanks again.  Yes, I agree that stable with cancer is good and now that I have started anti-estrogen meds. and shut down my ovaries I hope that it continues to stay stable.  Do you have any idea how long AI's take to work?  Also, I noticed you changed your meds. Did you become resistant to the first round?  I know resistance is an issue that eventually shows up. Do you how long resistance to a med usually takes or is it different with everyone? My guess is it's different for everyone.  Anyway, thanks for sharing your story with me.  It really did give me hope.

CypressCynthia

bae5670 said:

Thanks again.  Yes, I agree

Thanks again.  Yes, I agree that stable with cancer is good and now that I have started anti-estrogen meds. and shut down my ovaries I hope that it continues to stay stable.  Do you have any idea how long AI's take to work?  Also, I noticed you changed your meds. Did you become resistant to the first round?  I know resistance is an issue that eventually shows up. Do you how long resistance to a med usually takes or is it different with everyone? My guess is it's different for everyone.  Anyway, thanks for sharing your story with me.  It really did give me hope.

Initially, 26 years ago, I

Initially, 26 years ago, I was on tamoxifen, then a lengthy remission.  After the recurrence, I was placed on arimidex, but my oncologist didn't like the way my markers were continuing to go up on the arimidex.  My scans were stable, but still showing some activity.  He decided to have me try faslodex (works a little differently than arimidex) and, voila, I am in remission with my markers going down and no sign of activity at all on my last PET. 

I am sometimes not as convinced that I have a slow growing tumor as one that is amazingly responsive to hormone therapy.  I say this because my family is riddled with ER+ breast cancer and the untreated (before hormone therapy)  died rather quickly within a couple of years.  Of course those relatives were not tested for estrogen receptor status, so I don't know for sure, but myself and my two sisters are ER+ and all have had lengthy remissions (>10 years).   All of us have been very compliant with our therapy because we all know first-hand what happens if you don't take the drugs!

SIROD

bae5670 said:

Thank You

Hi and thanks your your response.  Nothing ever showed up in blood work or tumor marker tests. CT scan showed a few area's of concern so we did f/u with pet/ct scan.  The ct/pet scan showed a very tiny area that the ct scan didn't in my sacrum with a very mild SUV of 1.6.  I just had another ct scan and everything shows stable.  Dr. said we are going to be in wait and see mode since nothing is big enough for a biopsy and tumor marker tests not working. We shut down my ovaries and i have started hormone therapy since the cancer is 100% hormonal.  I go back in three months and he will order another round of scans. He said my cancer is very slow and sluggish, quiescent.  I feel like I'm sitting around waiting for the water to boil!.

Indolent Cancers

I have a slow growing indolent kind of cancer.  Diagnose in 1994, ER+  PR-  HER2 was not on the radar at the time.  I have mets since 2000 and have used only hormonal therapies since 1995.  

 

Hormonal drugs are slower to show if there working or not, compared to chemotherapy.  It takes about 3 months, maybe longer.  mBlood tests with markers never worked on me and are never used.  I found that the best judge whether something is working are your symptoms and how you are feeling.  My ct scan results will show usually what I already know.  Rarely,  am I surprised.

 

I've always been in treatment and would say my type is chronic and indolent.  I am now on the 2nd time around with Faslodex, doing only 250 mg shot the first time.  Faslodex is now 500 mg with 2 shots.  I have used Tamoxifen, Arimidex, Femara, Faslodex.  I did try to reboot Femara without success.  I plan on recycling the hormonal drugs.  

 

I've had so many scans that now since my last 2 were stable, I have decided that the symptoms need to warrant one.  Why spend precious time searching for cancer, it will let you know when one is needed.

 

My take on it.

 

Wishing you the best,

 

Doris

 

CypressCynthia

SIROD said:

Indolent Cancers

I have a slow growing indolent kind of cancer.  Diagnose in 1994, ER+  PR-  HER2 was not on the radar at the time.  I have mets since 2000 and have used only hormonal therapies since 1995.  

 

Hormonal drugs are slower to show if there working or not, compared to chemotherapy.  It takes about 3 months, maybe longer.  mBlood tests with markers never worked on me and are never used.  I found that the best judge whether something is working are your symptoms and how you are feeling.  My ct scan results will show usually what I already know.  Rarely,  am I surprised.

 

I've always been in treatment and would say my type is chronic and indolent.  I am now on the 2nd time around with Faslodex, doing only 250 mg shot the first time.  Faslodex is now 500 mg with 2 shots.  I have used Tamoxifen, Arimidex, Femara, Faslodex.  I did try to reboot Femara without success.  I plan on recycling the hormonal drugs.  

 

I've had so many scans that now since my last 2 were stable, I have decided that the symptoms need to warrant one.  Why spend precious time searching for cancer, it will let you know when one is needed.

 

My take on it.

 

Wishing you the best,

 

Doris

 

I found one article

I found one article "Therapeutic Strategies Using the Aromatase Inhibitor Letrozole and Tamoxifen in a Breast Cancer Model" that mentions changing to another therapy if your aromatase inhibitor is not effective after 34 weeks (~8 months).  It takes a long time as Doris pointed out.  Hope this helps!

http://jnci.oxfordjournals.org/content/96/6/456.long