PET/CT Scan jitters
Here I go again. 4 months into my diagnosis and still doing the test mambo! I had a CT Scan 2 weeks ago that show lung nodules. Went to a thoracic surgeon because the radiology report said "concern for pulmonary mets". The surgeon said the nodules are small (less than 7mm) but one of the nodules was semi solid. He spoke to my med onc who said that her course of treatment would not change even if this is cancer. Meaning, rads and HT. My cancer is ER+. Anyway, I saw the rad onc last Thursday and asked him if I could take Arimidex while doing radiation. He said NO. So I explained why my med onc said to go ahead and start taking it. He then decided to talk to my med onc and they both came to the conclusion that a PET/CT Scan is in order.
I've had panic attacks and can't sleep or eat. I so scared. My med onc did TRY to say Stage IV a couple of times and I kept interrupting her. I DID NOT WANT TO HEAR THAT.
Is Stage IV curable? I can't believe I am asking this question. I have asked God to help me cope because I honestly believe the scan will light up like a Christmas tree. I have pain in my ribs that have me doubling over.
Please send the pink bus and some prayers. OH ... and the biggest box of tissues you can find.
xoxoxo
Scared PINKLESS
Comments
-
Different Drs have different ideas
I started rads 1 week after last chemo and started Femara 1 week after starting rads. Both Chemo and Rads Drs wanted me on it ASAP being IBC.
I'm Stage 3 IBC so haven't dealt with mets but there are several here who have quite a long history. I know you want to believe that what you've been through and go through will "cure" you BUT in today's world there is no CURE for cancer - the best we get is No Evidence of Disease (NED) which may last til you die at 110 or get gored running the bulls at Pamploma (sp?).
Have pain in an area does not mean the worst. I've recently had some pain along my upper arm bone and there is a 'knot' and I convinced myself that it was a met. Saw my PA and it is a small muscle tear at the attachment site. We do let our minds play games with us sometimes.
We all hear things we don't WANT to - that's why it is important to take someone with you in many cases.0 -
Hi MsGebby
From what I understand stage IV is not curable. I am stage IV. Mine is in all my bones, some skin lesions, I have a couple of nodules in my lung and I now have a lesion in my liver. But this being said... stage IV does not mean instant death. I could be stage IV for years.
I was diagnosed stage IV 9/2010 and was not given a good prognosis, but I have gone almost a year longer than the initial thoughts and I am still driving, doing a lot of the things that I use to, I just get tired easier.
I am having chemo every Wednesday, and have been on chemo since January 2011 and will continue as long as it is working. It is not easy but for the most part, I am doing pretty well. On days when I don't feel well, I just sleep more. Then wake up and pretend it is a new day.
Don't let the diagnosis get you down. I have learned to live each day by how I feel, not by the doctors prognosis. If I listened to the doctors I would have been gone almost a year ago. My feeling is that it is up to God, the doctors are just tools, and if they can keep me around long enough, maybe there will be something that comes up that will turn it into a chronic condition like AIDS.
Just don't give up, there are so many different combinations of drugs, and they are doable. I set goals and as I reach each one, I set another. Right now my goal is to be here and feeling good in June to go to my niece's wedding in San Diego, the next immediate goal is to feel well when a good friend comes for a week in January, then my boys are going to London and Amsterdam in March so I have to feel good enough to take care of the dogs while they are gone.
My heart goes out to you and your family, but the treatments are doable but not easy. Give yourself some time to get use to what you are fighting, because it is a fight, and if possible take some time to get away from it all. I personally like Disneyland and Nevada because I can get lost in my surroundings and for a time completely forget that I have cancer.
PM if you need anything or just want to talk. There are many of us on this board who are stave IV, and we are doing it!
With love and prayers,
Carol0 -
Carol .. Bless you, Bless you for reaching outcamul said:Hi MsGebby
From what I understand stage IV is not curable. I am stage IV. Mine is in all my bones, some skin lesions, I have a couple of nodules in my lung and I now have a lesion in my liver. But this being said... stage IV does not mean instant death. I could be stage IV for years.
I was diagnosed stage IV 9/2010 and was not given a good prognosis, but I have gone almost a year longer than the initial thoughts and I am still driving, doing a lot of the things that I use to, I just get tired easier.
I am having chemo every Wednesday, and have been on chemo since January 2011 and will continue as long as it is working. It is not easy but for the most part, I am doing pretty well. On days when I don't feel well, I just sleep more. Then wake up and pretend it is a new day.
Don't let the diagnosis get you down. I have learned to live each day by how I feel, not by the doctors prognosis. If I listened to the doctors I would have been gone almost a year ago. My feeling is that it is up to God, the doctors are just tools, and if they can keep me around long enough, maybe there will be something that comes up that will turn it into a chronic condition like AIDS.
Just don't give up, there are so many different combinations of drugs, and they are doable. I set goals and as I reach each one, I set another. Right now my goal is to be here and feeling good in June to go to my niece's wedding in San Diego, the next immediate goal is to feel well when a good friend comes for a week in January, then my boys are going to London and Amsterdam in March so I have to feel good enough to take care of the dogs while they are gone.
My heart goes out to you and your family, but the treatments are doable but not easy. Give yourself some time to get use to what you are fighting, because it is a fight, and if possible take some time to get away from it all. I personally like Disneyland and Nevada because I can get lost in my surroundings and for a time completely forget that I have cancer.
PM if you need anything or just want to talk. There are many of us on this board who are stave IV, and we are doing it!
With love and prayers,
Carol
to MsGebby and explaining the circumstances surrounding your diagnosis at Stage IV. It helps to have someone who cares, been there, and able to help you maneuver thru this most difficult journey.
Like Miss Carol stated .. .. my heart and soul goes out to you -- all I can do, which is most difficult for many of us WARRIORS .. is pray, hope and send out positive thoughts.
May you find peace, strength and courage to continue the fight.
Gentle hugs, and prayers for health.
Vicki Sam0 -
I don't believe, in myRague said:Different Drs have different ideas
I started rads 1 week after last chemo and started Femara 1 week after starting rads. Both Chemo and Rads Drs wanted me on it ASAP being IBC.
I'm Stage 3 IBC so haven't dealt with mets but there are several here who have quite a long history. I know you want to believe that what you've been through and go through will "cure" you BUT in today's world there is no CURE for cancer - the best we get is No Evidence of Disease (NED) which may last til you die at 110 or get gored running the bulls at Pamploma (sp?).
Have pain in an area does not mean the worst. I've recently had some pain along my upper arm bone and there is a 'knot' and I convinced myself that it was a met. Saw my PA and it is a small muscle tear at the attachment site. We do let our minds play games with us sometimes.
We all hear things we don't WANT to - that's why it is important to take someone with you in many cases.
I don't believe, in my opinion, that any of us are ever cured. I do believe we are in remission which is good enough for me. Or at least, that is what my oncologist says.
I know many women, on and off this board, that are Stage IV, and, are living life to the fullest. There is one woman in the cancer support group that has been Stage IV for over 20 years. She is amazing and is no longer in treatment and is doing great.
I am sending you prayers and please let us know if there is anything else we can do.
Hugs, Jan0 -
I always hate when one ofVickiSam said:Carol .. Bless you, Bless you for reaching out
to MsGebby and explaining the circumstances surrounding your diagnosis at Stage IV. It helps to have someone who cares, been there, and able to help you maneuver thru this most difficult journey.
Like Miss Carol stated .. .. my heart and soul goes out to you -- all I can do, which is most difficult for many of us WARRIORS .. is pray, hope and send out positive thoughts.
May you find peace, strength and courage to continue the fight.
Gentle hugs, and prayers for health.
Vicki Sam
I always hate when one of the pink sisters is this upset and so afraid. I wish it were possible to reach thru this computer to hug you to comfort you in some way.
Just know that each and every one of us is praying for you.
Hugs, Lex0 -
I'm stage IV...Alexis F said:I always hate when one of
I always hate when one of the pink sisters is this upset and so afraid. I wish it were possible to reach thru this computer to hug you to comfort you in some way.
Just know that each and every one of us is praying for you.
Hugs, Lex
Had my recurrence diagnosed this past June...been through the wringer but I'm still standing and going about my business! My oncologist says
stage IV is just a number.....that I will be treated for this just like any other chronic disease, i.e., heart disease,
Diabetes, etc....meaning I will have cancer from here on but there is treatment available....and as Carol said and my oncologist said the same thing...there is no cure for cancer...we can go into remission, meaning there is no evidence of disease (NED) but a cure doesn't exist...but stage IV is not an automatic death sentence either! Many women and men (we can't forget this strikes men,also) as Carol stated can remain stage IV for years...I plan on being one of those!
Your fear is understandable...doesn't matter what stage... we are faced, at times with crippling fear. My heart goes out to you..my way of coping with this, is acceptance...it is what it is...we can't change it...we can't turn back the clock...I couldn't control getting BC the first time and I had no control over it's return......this has given me such peace...I will not allow, like I did when I went through this the first time, to let my mind go to that "dark" place....When I got my first diagnoses, I truly thought I would lose my mind and that was early stage II a..no lymph node involvement..and lo and behold it came back in my lymph nodes......as I said, I just do now, what I have to do to keep "it" at bay...
Please keep us posted,we truly care...the women on this board saved my sanity in 2009....we'll help you get through this...and know that prayers are being said for you...
My very best to you..
Hugs, Nancy0 -
Coping
Hi Mary,
That is interesting that the rad oncologist said no to doing this hormone therapy during radiation. I really would like to know why. Did you ask him?I began Arimidex during my radiation treatments with no ill effects. Since radiation is a local treatment and Arimidex is a systemic one, I don’t understand his reasoning. Arimidex isn’t toxic, it just blocks estrogen.
Mary, Stage IV or metastasis to a major organ (lungs, liver, bones, brain) does not have a cure. There are many, many new treatments in the works including the new vaccine that is still in trial but looks immensely hopeful.
Years ago on my first forum, a lady joined who had bones, liver and lung metastasis, stage IV at diagnose. She live 10+ years with this disease. She worked right up to the last few years when treatment finally began taking there toll. She travelled and lived life to the hilt. When they found lung, lining mets in 2008, I began going through my old forums archives. Looking up anyone who had the same diagnose, especially those with ER+. I found Jane, but her post sort of just ended, I figured she had died. Then I went to forums for those who have mets and lo and behold there was Jane posting. I followed her for about 1 1/2 years without contacting her. Then she posted that she was tired of this never ended disease. I sent her a private email to let her know just how uplifting it was for me to find her doing so well. We wrote for quite a while and eventually lost her battle. The point is she lived with all three areas of involvement for 10+ years.
Am very happy to read that they are finally giving you a PET/CT and stop the guessing game.
No one knows when their number is up. We all learn to cope with the disease in our own unique way. We do all we can to give us the best odds. You will find a way to deal with it Mary.
Wishing you the best in hopes that it will be something else.
Best,
Doris0 -
Praying for you and will beSIROD said:Coping
Hi Mary,
That is interesting that the rad oncologist said no to doing this hormone therapy during radiation. I really would like to know why. Did you ask him?I began Arimidex during my radiation treatments with no ill effects. Since radiation is a local treatment and Arimidex is a systemic one, I don’t understand his reasoning. Arimidex isn’t toxic, it just blocks estrogen.
Mary, Stage IV or metastasis to a major organ (lungs, liver, bones, brain) does not have a cure. There are many, many new treatments in the works including the new vaccine that is still in trial but looks immensely hopeful.
Years ago on my first forum, a lady joined who had bones, liver and lung metastasis, stage IV at diagnose. She live 10+ years with this disease. She worked right up to the last few years when treatment finally began taking there toll. She travelled and lived life to the hilt. When they found lung, lining mets in 2008, I began going through my old forums archives. Looking up anyone who had the same diagnose, especially those with ER+. I found Jane, but her post sort of just ended, I figured she had died. Then I went to forums for those who have mets and lo and behold there was Jane posting. I followed her for about 1 1/2 years without contacting her. Then she posted that she was tired of this never ended disease. I sent her a private email to let her know just how uplifting it was for me to find her doing so well. We wrote for quite a while and eventually lost her battle. The point is she lived with all three areas of involvement for 10+ years.
Am very happy to read that they are finally giving you a PET/CT and stop the guessing game.
No one knows when their number is up. We all learn to cope with the disease in our own unique way. We do all we can to give us the best odds. You will find a way to deal with it Mary.
Wishing you the best in hopes that it will be something else.
Best,
Doris
Praying for you and will be on that bus when you need us.
So sorry you are having to go through this.
Love, Teresa0 -
Prayers for yougami43 said:Praying for you and will be
Praying for you and will be on that bus when you need us.
So sorry you are having to go through this.
Love, Teresa
I will be on the bus & I will be praying for you.
Hugs & God Bless,
Dawne0 -
I'm praying for you and ISIROD said:Coping
Hi Mary,
That is interesting that the rad oncologist said no to doing this hormone therapy during radiation. I really would like to know why. Did you ask him?I began Arimidex during my radiation treatments with no ill effects. Since radiation is a local treatment and Arimidex is a systemic one, I don’t understand his reasoning. Arimidex isn’t toxic, it just blocks estrogen.
Mary, Stage IV or metastasis to a major organ (lungs, liver, bones, brain) does not have a cure. There are many, many new treatments in the works including the new vaccine that is still in trial but looks immensely hopeful.
Years ago on my first forum, a lady joined who had bones, liver and lung metastasis, stage IV at diagnose. She live 10+ years with this disease. She worked right up to the last few years when treatment finally began taking there toll. She travelled and lived life to the hilt. When they found lung, lining mets in 2008, I began going through my old forums archives. Looking up anyone who had the same diagnose, especially those with ER+. I found Jane, but her post sort of just ended, I figured she had died. Then I went to forums for those who have mets and lo and behold there was Jane posting. I followed her for about 1 1/2 years without contacting her. Then she posted that she was tired of this never ended disease. I sent her a private email to let her know just how uplifting it was for me to find her doing so well. We wrote for quite a while and eventually lost her battle. The point is she lived with all three areas of involvement for 10+ years.
Am very happy to read that they are finally giving you a PET/CT and stop the guessing game.
No one knows when their number is up. We all learn to cope with the disease in our own unique way. We do all we can to give us the best odds. You will find a way to deal with it Mary.
Wishing you the best in hopes that it will be something else.
Best,
Doris
I'm praying for you and I will be ready for the pink bus when you're ready to go.
Hugs, Kylez0 -
THANKS for making me laughRague said:Different Drs have different ideas
I started rads 1 week after last chemo and started Femara 1 week after starting rads. Both Chemo and Rads Drs wanted me on it ASAP being IBC.
I'm Stage 3 IBC so haven't dealt with mets but there are several here who have quite a long history. I know you want to believe that what you've been through and go through will "cure" you BUT in today's world there is no CURE for cancer - the best we get is No Evidence of Disease (NED) which may last til you die at 110 or get gored running the bulls at Pamploma (sp?).
Have pain in an area does not mean the worst. I've recently had some pain along my upper arm bone and there is a 'knot' and I convinced myself that it was a met. Saw my PA and it is a small muscle tear at the attachment site. We do let our minds play games with us sometimes.
We all hear things we don't WANT to - that's why it is important to take someone with you in many cases.
THANKS for making me laugh Rague(get gored by running bulls?) Priceless!!! LOL I have a hard time with "Let's wait and see". Hubby "seems" to not worry. He has a practical point of view ... even with cancer. He is one of those tough love kind of characters. Right now, I need to be coddled and swathed in warmth of love and light. Is that so wrong?
Anyway, I had the scan yesterday. Froze my azz off! I was told the results would be available at night, which means the doc will/should have them today. I don't think I will hear anything until after Christmas IF the news is not good. Oh well ... trying to keep my chin up and have myself a Merry Little Christmas NOW.
Love to you and yours
Merry Christmas0 -
Thanks for brightening mysurvivorbc09 said:I don't believe, in my
I don't believe, in my opinion, that any of us are ever cured. I do believe we are in remission which is good enough for me. Or at least, that is what my oncologist says.
I know many women, on and off this board, that are Stage IV, and, are living life to the fullest. There is one woman in the cancer support group that has been Stage IV for over 20 years. She is amazing and is no longer in treatment and is doing great.
I am sending you prayers and please let us know if there is anything else we can do.
Hugs, Jan
Thanks for brightening my day!
Hugs to you, Jan0 -
((((Doris))))SIROD said:Coping
Hi Mary,
That is interesting that the rad oncologist said no to doing this hormone therapy during radiation. I really would like to know why. Did you ask him?I began Arimidex during my radiation treatments with no ill effects. Since radiation is a local treatment and Arimidex is a systemic one, I don’t understand his reasoning. Arimidex isn’t toxic, it just blocks estrogen.
Mary, Stage IV or metastasis to a major organ (lungs, liver, bones, brain) does not have a cure. There are many, many new treatments in the works including the new vaccine that is still in trial but looks immensely hopeful.
Years ago on my first forum, a lady joined who had bones, liver and lung metastasis, stage IV at diagnose. She live 10+ years with this disease. She worked right up to the last few years when treatment finally began taking there toll. She travelled and lived life to the hilt. When they found lung, lining mets in 2008, I began going through my old forums archives. Looking up anyone who had the same diagnose, especially those with ER+. I found Jane, but her post sort of just ended, I figured she had died. Then I went to forums for those who have mets and lo and behold there was Jane posting. I followed her for about 1 1/2 years without contacting her. Then she posted that she was tired of this never ended disease. I sent her a private email to let her know just how uplifting it was for me to find her doing so well. We wrote for quite a while and eventually lost her battle. The point is she lived with all three areas of involvement for 10+ years.
Am very happy to read that they are finally giving you a PET/CT and stop the guessing game.
No one knows when their number is up. We all learn to cope with the disease in our own unique way. We do all we can to give us the best odds. You will find a way to deal with it Mary.
Wishing you the best in hopes that it will be something else.
Best,
Doris
Hey lady...
The answer to your question ~~~That is interesting that the rad oncologist said no to doing this hormone therapy during radiation. I really would like to know why. Did you ask him? ~~~ He said that with both of these treatments there are similar symptoms. He says if I had problems with, say, pain, he wouldn't know if it was the rads or the drugs. Of course, NOW that he is aware of the potential for mets, he probably won't have a choice.
The scan was uneventful. Just too long to be sitting around and, dayum, it was cold!!!
You know, sometimes I just feel so inferior to others who are and have gone through this. It's like, I can't get cancer right! I am not saying this to anyone on this board. It's the people around me. I've basically stopped updating my family. They seem too busy to even call and ask "how are you?" Can you imagine telling them this could be Stage IV? I don't want the heartache of hearing phoney baloney coming from their mouths. ACTING like they care. I am sure they do, but they don't know how to show it "like a girl". I think that's where most of my fear comes from. Family is so very important to me. And by family I mean 7 brothers, 1 sister, my dad, 5 sis in laws, 1 bro in law and 23 nieces and nephews.
I have been strong since the day I was born. This is most definitely the hardest curve ball thrown at me so far. But I know once I have all the information to fight, I will do just that. How can I fail? I have an even larger family now. The Pink Ladies and the magical bus!
It's still unimaginable to me that this all started just 4 months ago. I feel like I am caught in the vortex of a cyclone. It's just sucking the air out of me and won't let go. I pray every night to my Lord that He give me strength to cope. That's all. I am not asking for a miracle. Although, I would gratefully accept one if He chose to send one my way. 8*)
Learning from you and ALL of my pink friends that this may not be a death sentence has truly made my day brighter. I can do this. I can do this. I can do this. Kinda like the little train "that could".
I sent you an email but am so happy you checked into the forum.
Blessings sent to you this Holiday Season.
xoxo
Mary0 -
Thank YOU from the bottom of
Thank YOU from the bottom of my heart. You have all inspired me. It's so amazing to be part of something that was built from such a horrible disease. That something is FRIENDSHIP.
I feel blessed to have been HUGGED by such a large group of people whom I call "sisters". Meaning >>>>The feeling of kinship with and closeness to a group of women or all women<<<<
I will be OK because of YOU YOU YOU YOU and YOU! ALL OF YOU.
with love and peace in my heart,
Merry Christmas
Mary0 -
My rads oncologist did NOTMsGebby said:((((Doris))))
Hey lady...
The answer to your question ~~~That is interesting that the rad oncologist said no to doing this hormone therapy during radiation. I really would like to know why. Did you ask him? ~~~ He said that with both of these treatments there are similar symptoms. He says if I had problems with, say, pain, he wouldn't know if it was the rads or the drugs. Of course, NOW that he is aware of the potential for mets, he probably won't have a choice.
The scan was uneventful. Just too long to be sitting around and, dayum, it was cold!!!
You know, sometimes I just feel so inferior to others who are and have gone through this. It's like, I can't get cancer right! I am not saying this to anyone on this board. It's the people around me. I've basically stopped updating my family. They seem too busy to even call and ask "how are you?" Can you imagine telling them this could be Stage IV? I don't want the heartache of hearing phoney baloney coming from their mouths. ACTING like they care. I am sure they do, but they don't know how to show it "like a girl". I think that's where most of my fear comes from. Family is so very important to me. And by family I mean 7 brothers, 1 sister, my dad, 5 sis in laws, 1 bro in law and 23 nieces and nephews.
I have been strong since the day I was born. This is most definitely the hardest curve ball thrown at me so far. But I know once I have all the information to fight, I will do just that. How can I fail? I have an even larger family now. The Pink Ladies and the magical bus!
It's still unimaginable to me that this all started just 4 months ago. I feel like I am caught in the vortex of a cyclone. It's just sucking the air out of me and won't let go. I pray every night to my Lord that He give me strength to cope. That's all. I am not asking for a miracle. Although, I would gratefully accept one if He chose to send one my way. 8*)
Learning from you and ALL of my pink friends that this may not be a death sentence has truly made my day brighter. I can do this. I can do this. I can do this. Kinda like the little train "that could".
I sent you an email but am so happy you checked into the forum.
Blessings sent to you this Holiday Season.
xoxo
Mary
My rads oncologist did NOT want me on tamoxifen or any vitamins during rads. The vitamins was because he didn't want my good cells and any cancer cells getting healthy and being strong. You want them weak. And, no to tamox because he explained like Ritzy did on here before, the tamox is like pac man chasing around in there looking for estrogen, but, while it does that, it chases and moves the cancer cells and you want them to stay where they are so the rads will zap them.0 -
I'm sending prayers your wayMsGebby said:THANKS for making me laugh
THANKS for making me laugh Rague(get gored by running bulls?) Priceless!!! LOL I have a hard time with "Let's wait and see". Hubby "seems" to not worry. He has a practical point of view ... even with cancer. He is one of those tough love kind of characters. Right now, I need to be coddled and swathed in warmth of love and light. Is that so wrong?
Anyway, I had the scan yesterday. Froze my azz off! I was told the results would be available at night, which means the doc will/should have them today. I don't think I will hear anything until after Christmas IF the news is not good. Oh well ... trying to keep my chin up and have myself a Merry Little Christmas NOW.
Love to you and yours
Merry Christmas
I'm sending prayers your way Ms Gebby!0 -
Waiting sux!
Had this damned scan on the 22nd. I was told the results would be ready that night. I figured I wouldn't hear anything until after Christmas. Well, I called my MO today and got a message: The Office is closed today! Holy Hell! Even @ the RO's office there was NO ANSWER. Freaking out just seems to be my norm.
This so totally sucks!
Until tomorrow I guess *sigh*
You can call this "Pink" Lady one BLUE Lady today
0
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