Puzzled... I think >:

aysemari

I am not sure what to make of this. My new oncologist is telling me
that my cancer was Estrogen and Progesterone positive. And he's
suggesting that I take Tamoxifen for 5 years. 5 YEARS... in my head
I was just screaming silently " NOOOOOO but I am DONE!!".

I saw 2 oncologists in AZ and both of them said I was only Her2 positive.
Frustrated is how I feel... I would have taken a different approach,
different chemo.. How could that be?

The new oncologist ordered the slides from Pathology report and
will get back to me after he has reviewed them. He actually scolded
me and asked me to take it easier. Exercise but short intervals,build
up slowly he said. He thought the feeling tired is very common with
my chemo regime and a year of herceptin. He wants to do a PET scan
end of August thanks to a lovely angry bee sting, I have a red hot
pancake sized inflammation on my hip. He said that would light up
if we did it now.

I just don't know what to make of it all. I think I will contact my Onc
in AZ and wait and see what the new one says after he gets the slides.

I am SOOOOOOOO over cancer! I think I will go to the garden center
and plant some flowers, Traci's post really inspired me. What's good to plant
this late in the year, any suggestion for this amateur wanna be gardener?

Love,
Ayse

Lighthouse_7

First of all it's so good to
First of all it's so good to see you posting. I've been thinking a lot about you lately. I've been excited for you with all the new things in NYC, I've always loved that city
I hate to see you down about this and I know it will work out because you are always so optimistic.
I can't explain why the doctors would see everything so different, but I pray that it's just a miscommunication and you'll soon know what to do.
Keep up the beautiful attitude for life my friend!
I have to live precariously through you
Hugs,
Wanda

TraciInLA

Possible explanation
Ayse,

It used to be that we were categorized as either ER+/PR+ or ER-/PR-, black or white. Doctors are now more and more recognizing that women who are "negative" may still be a little bit positive, and that little bit of positiveness can benefit from hormone therapy like Tamoxifen.

I'm thinking this could be the case with you. Do you have the pathology report(s) from your initial biopsy(ies)? The one you were diagnosed from? That report will show a percentage of ER and PR -- in my case, the percentages are around 75-80%, in your case, perhaps they're only 10 or 20%? That's the first question you need to have answered.

As someone who still has 3 1/2 years of Tamoxifen to go, I SO understand the whole "Am I done YET?!?" feeling. But...if your doctor thinks there's more you can do to keep the cancer monster away -- I say at least think about it!

I hope that's helpful -- especially because I can't be of any help to you at all about gardening! Southern California's planting seasons are literally the complete opposite of East Coast planting seasons -- we even have our own gardening books and guides.

Big hug to you,

Traci

missrenee

TraciInLA said:

Possible explanation
Ayse,

It used to be that we were categorized as either ER+/PR+ or ER-/PR-, black or white. Doctors are now more and more recognizing that women who are "negative" may still be a little bit positive, and that little bit of positiveness can benefit from hormone therapy like Tamoxifen.

I'm thinking this could be the case with you. Do you have the pathology report(s) from your initial biopsy(ies)? The one you were diagnosed from? That report will show a percentage of ER and PR -- in my case, the percentages are around 75-80%, in your case, perhaps they're only 10 or 20%? That's the first question you need to have answered.

As someone who still has 3 1/2 years of Tamoxifen to go, I SO understand the whole "Am I done YET?!?" feeling. But...if your doctor thinks there's more you can do to keep the cancer monster away -- I say at least think about it!

I hope that's helpful -- especially because I can't be of any help to you at all about gardening! Southern California's planting seasons are literally the complete opposite of East Coast planting seasons -- we even have our own gardening books and guides.

Big hug to you,

Traci

Hi, Ayse
Boy Oh Boy! I guess we'll never be totally done--with my lymphedema I feel that way a lot. What Traci said makes sense to me. They told me I was 98% ER/PR positive so that was a no-brainer. However, my HER2 was very equivocal, but leaning more toward negative so they said no herceptin. I waited for a month for them to test that and re-test that and it still came out iffy.

And, remember, dear Ayse, taking Tamox. for 5 years will be okay--especially if it keeps you safe and healthy.

Gardening and me--forget about it! However, I do have to say I am still managing to keep the plants you gave me alive and doing well. I have re-potted two of them and I think they're happy.

Keep posting, girlfriend--we miss you if you don't.

Hugs, Renee

phoenixrising

Oh geesh, I can see why
Oh geesh, I can see why you'd be confused. One thing that might help you understand is getting your pathology report. I got copies of all my tests and reports and devoured them to understand everything I could about my case. This may help you.

Not sure what plants to choose for this time of year in your area but may I suggest anything that lightens the heart and puts a sparkle in your eye......

hugs
jan

cinnamonsmile

I find that marigolds are
I find that marigolds are very hardy plants, hard to kill and are very pretty. Petunias aren't bad either. Jester marigolds are going to be taller than other types. I love flowers and gardening. Watching your creations grow can really make you feel good.

sea60

Ayse,
love that pic of you and your sweetie!

When they told me I had to go on Tamoxifen, I refused. I didn't want any more drugs in my body. But my oncologist, so sweet and understanding said that she will recommend anything that will give me the BEST survival rate and by taking this medication, it would. I'm slated to get off it in October. I ask her what I would be taking then and she just looked at me with a big smile and said "Nothing!". Wow! Cold turkey?!?!?

Just do what you feel is best for you. And remember, at least Tamoxifen isn't as bad as Chemo.

Hugs,

Sylvia

natly15

Ayse I think Traci explained
Ayse I think Traci explained things quite well. I was only 13% ER+ and was given Femara, not Tamoxifin because I'm post menopause. Gals with the high ER percentages have an even better chance of responding to either Tamoxifin (for pre-menopausal women) and either Femara or Arimidex for those (post menopause). My Onc felt it important for me to take the Femara even tho my percentage was so low. Every little bit helps.

Now girl I know about being tired and have to remind myself to take it easy because my body has been thru major shock. When I overdue it I usually get sick, and what I call overdoing now, is nothing compared to what I used to do. You are much younger than me, BUT your body has also been thru the same major shock so be easy on it, but have fun while doing so.

Get all your pathology reports and find out whats going on.

VickiSam

cinnamonsmile said:

I find that marigolds are
I find that marigolds are very hardy plants, hard to kill and are very pretty. Petunias aren't bad either. Jester marigolds are going to be taller than other types. I love flowers and gardening. Watching your creations grow can really make you feel good.

I am not going to 'scold' YOU, just want to give you a big
hug! Exercise and getting back to normal takes time -- I hate to agreed with your new Oncologist -- I've been there, done that and it sucks big time. You are in LOVE, all is well with your universe -- flowers in bloom, concerts in the park -- a new world awaits you .. So difficult to hold yourself back from living life. Baby steps - Ayse, I know you hate to hear this -- but your body is telling you to sloooooooow down.

Estrogen and Progesterone positive -- from negative -- WHAT the He&&? Confused, bewildered and frustrated, I bet! Just went we think it's almost over, and safe to get back into the water --- another tusunami to re-arrange your life! So sorry ..Right track with getting block / slides, and Pathology report. Similar experience myself when I switch hospitals and doctors after my lumpectomy -- when DCIS, and Her2 showed up.

Keep your chin up, enjoy your new life -- . All this negative vs positive will get ironed out ..

Strength, Courage and Hope.

Vicki Sam

fauxma

natly15 said:

Ayse I think Traci explained
Ayse I think Traci explained things quite well. I was only 13% ER+ and was given Femara, not Tamoxifin because I'm post menopause. Gals with the high ER percentages have an even better chance of responding to either Tamoxifin (for pre-menopausal women) and either Femara or Arimidex for those (post menopause). My Onc felt it important for me to take the Femara even tho my percentage was so low. Every little bit helps.

Now girl I know about being tired and have to remind myself to take it easy because my body has been thru major shock. When I overdue it I usually get sick, and what I call overdoing now, is nothing compared to what I used to do. You are much younger than me, BUT your body has also been thru the same major shock so be easy on it, but have fun while doing so.

Get all your pathology reports and find out whats going on.

Ayse,
I am so sorry that
Ayse,
I am so sorry that this is being thrown at you but I think Traci said it best. And you still want to do all you can and use anything at your disposal. Frustrating as it is, you will do what you need to do so you can do what you want to do.
Stef

cahjah75

Ayse
sometimes it feels like we take a step forward and 2 backwards. It would be awful if it turns out that your ER/PR and HER2 were backwards. Hoping your new onc can get it all straightened out. Take it easy
{{hugs}} Char

aysemari

TraciInLA said:

Possible explanation
Ayse,

It used to be that we were categorized as either ER+/PR+ or ER-/PR-, black or white. Doctors are now more and more recognizing that women who are "negative" may still be a little bit positive, and that little bit of positiveness can benefit from hormone therapy like Tamoxifen.

I'm thinking this could be the case with you. Do you have the pathology report(s) from your initial biopsy(ies)? The one you were diagnosed from? That report will show a percentage of ER and PR -- in my case, the percentages are around 75-80%, in your case, perhaps they're only 10 or 20%? That's the first question you need to have answered.

As someone who still has 3 1/2 years of Tamoxifen to go, I SO understand the whole "Am I done YET?!?" feeling. But...if your doctor thinks there's more you can do to keep the cancer monster away -- I say at least think about it!

I hope that's helpful -- especially because I can't be of any help to you at all about gardening! Southern California's planting seasons are literally the complete opposite of East Coast planting seasons -- we even have our own gardening books and guides.

Big hug to you,

Traci

Traci - it is more like
Estrogen 90%
Progesterone 70%

And I just can't believe this... I even asked my oncologist about Soy and
was told since I have no problems with estrogen and progesterone it would
not be an issue for me. I dug out my pathology report... and I am just in awe
that no one touched on this topic with me. I had 2 different oncologists in AZ.
I didn't know how to interpret the report and I took their word for it - WRONG move!

Now I have to make some tough decisons...

Thanks for taking the time to explain.

Love,
Ayse

aysemari

cinnamonsmile said:

I find that marigolds are
I find that marigolds are very hardy plants, hard to kill and are very pretty. Petunias aren't bad either. Jester marigolds are going to be taller than other types. I love flowers and gardening. Watching your creations grow can really make you feel good.

cinnamonsmile
I had to look up Marigolds and yes they do look nice! Yesterday
I ended up buying potted herbs. I got basil, thyme and rosemary.
Aaaah they smell heavenly. I have to make a home for them in the
garden. I have so many things to do with my house closing and all
but I really can't wait to get dirty and plant things!

Hugs,
Ayse

Kylez

aysemari said:

Traci - it is more like
Estrogen 90%
Progesterone 70%

And I just can't believe this... I even asked my oncologist about Soy and
was told since I have no problems with estrogen and progesterone it would
not be an issue for me. I dug out my pathology report... and I am just in awe
that no one touched on this topic with me. I had 2 different oncologists in AZ.
I didn't know how to interpret the report and I took their word for it - WRONG move!

Now I have to make some tough decisons...

Thanks for taking the time to explain.

Love,
Ayse

Sorry your 2 oncologists
Sorry your 2 oncologists were wrong Ayse. It doesn't make sense, as, ER + and PR+ is important to know. Praying you will get the right treatment now.


Hugs!

aysemari

missrenee said:

Hi, Ayse
Boy Oh Boy! I guess we'll never be totally done--with my lymphedema I feel that way a lot. What Traci said makes sense to me. They told me I was 98% ER/PR positive so that was a no-brainer. However, my HER2 was very equivocal, but leaning more toward negative so they said no herceptin. I waited for a month for them to test that and re-test that and it still came out iffy.

And, remember, dear Ayse, taking Tamox. for 5 years will be okay--especially if it keeps you safe and healthy.

Gardening and me--forget about it! However, I do have to say I am still managing to keep the plants you gave me alive and doing well. I have re-potted two of them and I think they're happy.

Keep posting, girlfriend--we miss you if you don't.

Hugs, Renee

Hi Renee
I know, I know... but I have to tell you, though I never thought about it
before... with this guy I thought of the possibility of having a child maybe
down the road... I guess I can kiss that fantasy good bye. And I have to
break him this news. GREAT, can't wait - NOT!

I am glad you are keeping my plants alive, I knew they'd be in good hands
with you. I sure miss having you around the corner (:

Hugs,
Ayse