14 year survivor - bad PET scan rsults

kmikola2
kmikola2 Member Posts: 29
in Breast Cancer #1
Unfortunately, results from PET scan aren't good. There are multiple spots on my bones...mets. I am soooo sad. Dr wants to do a bone biopsy to see if this is the original BC, or another type. He said it is very rare for it to come back like this after almost 15 years, but obviously it can happen.

The "good" news, is that it doesn't appear to be in any of my organs and my bloodwork is perfect. He says that if the cancer is ER+, I would take an oral medication and a monthly shot...God willing, I could go on like that for years.

If it isn't ER+, they would do chemo. Does all this sound consistent with your experience?

Kay :(
«134

Comments

  • Tux
    Tux Member Posts: 544
    #2
    PET scan news
    Sorry to hear that your scan was not good. I have not had any experience in this area of BC, so I cannot offer any further info. However, I want you to know that I am thinking of you and hope that you get the best medical care possible. (((Hugs)))
  • carkris
    carkris Member Posts: 4,553 Member
    #3
    Tux said:

    PET scan news
    Sorry to hear that your scan was not good. I have not had any experience in this area of BC, so I cannot offer any further info. However, I want you to know that I am thinking of you and hope that you get the best medical care possible. (((Hugs)))

    sorry the pet wasnt good.
    sorry the pet wasnt good. glad it is not in any organs. Cypress cynthia had hers recur in the bones after a long time as well. You might ask her what she is on as it is working well. HUgs!
  • mom62
    mom62 Member Posts: 604 Member
    #4
    Mets
    Hi,

    I have mets too. I do hormone therapy too. Arimidex and every three months Lupron shot. Mine is original from BC. I had recurrance and had most of sternum and 3 ribs removed as it had grown into the bones. I did chemo after surgery and am now on the hormone therapy for mets that grew while I was given chemo so I don't think chemo helped me at all.

    Terry
  • SIROD
    SIROD Member Posts: 2,194 Member
    #5
    Very Consistent
    Hi Kay,

    Sorry that it's back. I had a number of years between 2nd and 3rd recurrence, so I had a PET scan after tumors and effusion was found on the CT scan (2008) and then a biopsy (VATS, as it returned in the lungs and lining). I went on hormonal therapy as I am very ER+ and mine has been the same since it began back in 1994.

    There is no need to do chemo as hormonal therapies for those who are ER+ or PR+ is the same.

    Wishing you well on this new phase of the journey,

    Best,

    Doris
  • pinkkari09
    pinkkari09 Member Posts: 877
    #6
    Hi Kay, I'm so sorry for
    Hi Kay, I'm so sorry for your bad scan, it's not what we want to hear but when we do, we have this wonderful place to go and get an enormous amount of support from thousands of caring wonderful people. I have triple negative cancer, I was diagnosed stage IIIC in 2009, after multiple chemos, surgeries, and radiation, I put it into remission for 7 months, then it returned in my bones. I'm currently battling it as it is covering my entire spine, hips, femurs, shoulders, lymph nodes, etc...after failing three chemos, we have found one that has stabilized my progression. I'm content with stable beings it was growing through all the other meds. I pray you'll come here and get the support you'll so want and need. In addition, I pray the doctors find a good regimen to put this ugly beast in remission for you one more time. Big cyber hugs,
    Kari
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #7
    Tux said:

    PET scan news
    Sorry to hear that your scan was not good. I have not had any experience in this area of BC, so I cannot offer any further info. However, I want you to know that I am thinking of you and hope that you get the best medical care possible. (((Hugs)))

    I am so sorry Kay to read
    I am so sorry Kay to read the results of your PET scan. I am sending you positive thoughts and hugs.
  • missrenee
    missrenee Member Posts: 2,136 Member
    #8
    pinkkari09 said:

    Hi Kay, I'm so sorry for
    Hi Kay, I'm so sorry for your bad scan, it's not what we want to hear but when we do, we have this wonderful place to go and get an enormous amount of support from thousands of caring wonderful people. I have triple negative cancer, I was diagnosed stage IIIC in 2009, after multiple chemos, surgeries, and radiation, I put it into remission for 7 months, then it returned in my bones. I'm currently battling it as it is covering my entire spine, hips, femurs, shoulders, lymph nodes, etc...after failing three chemos, we have found one that has stabilized my progression. I'm content with stable beings it was growing through all the other meds. I pray you'll come here and get the support you'll so want and need. In addition, I pray the doctors find a good regimen to put this ugly beast in remission for you one more time. Big cyber hugs,
    Kari

    Oh, Kay, I so understand your feelings
    I was just given the news (about 6 weeks ago) that my cancer has spread into my bones. I had Stage 3C ER, PR+ and HER2- diagnosed in Dec. '09. I had lumpectomy, 6 rounds of TAC and 33 rads. I had been on Arimidex for almost 18 months when the cancer returned in my bones. I couldn't believe it. I had pain in one vertebra. I had a bone scan, CT, MRI and PET done. The MRI showed diffuse mets in the spine, pelvis. The PET only showed the mets in T-12 of my spine. They then did a bone biopsy of T-12--the vertebra that hurt and it came back same as the breast cancer.

    I have just started Faslodex injections (right now every other week and then once a month) which are supposed to suppress the hormones, and a monthly infusion of Zometa for bone strengthening. This really threw me for a loop. Everything has changed.

    Please PM me if you'd like to talk more. I'm in the same boat as you, just a little sooner.

    Also, don't worry about the bone biopsy. It sounded really awful to me, but I was asleep and recovery was really uneventful with almost no pain.

    Hugs, Renee
  • kmikola2
    kmikola2 Member Posts: 29
    #9
    missrenee said:

    Oh, Kay, I so understand your feelings
    I was just given the news (about 6 weeks ago) that my cancer has spread into my bones. I had Stage 3C ER, PR+ and HER2- diagnosed in Dec. '09. I had lumpectomy, 6 rounds of TAC and 33 rads. I had been on Arimidex for almost 18 months when the cancer returned in my bones. I couldn't believe it. I had pain in one vertebra. I had a bone scan, CT, MRI and PET done. The MRI showed diffuse mets in the spine, pelvis. The PET only showed the mets in T-12 of my spine. They then did a bone biopsy of T-12--the vertebra that hurt and it came back same as the breast cancer.

    I have just started Faslodex injections (right now every other week and then once a month) which are supposed to suppress the hormones, and a monthly infusion of Zometa for bone strengthening. This really threw me for a loop. Everything has changed.

    Please PM me if you'd like to talk more. I'm in the same boat as you, just a little sooner.

    Also, don't worry about the bone biopsy. It sounded really awful to me, but I was asleep and recovery was really uneventful with almost no pain.

    Hugs, Renee

    If my bone biopsy shows up
    If my bone biopsy shows up as ER+, my doctor is suggesting Aromasin and monthly XGEVA shots. He says he's had women on this regemine for 10+ years. But this just doesn't sound like enough. Isn't there more aggressive treatment?

    If its ER-, he says chemo. Because I only had AC 14 years ago, He says there are lots that we can try.

    I had a friend whose sister did some sort of bone marrow procedure after bone mets 18 years ago, and is still here. Is this a possibility? I'm thinking of asking for a second opinion.

    I know I am getting way ahead of myself, but I'm trying to gather information.

    Thanks for any input,

    Kay
  • squantum
    squantum Member Posts: 5
    #10
    kmikola2 said:

    If my bone biopsy shows up
    If my bone biopsy shows up as ER+, my doctor is suggesting Aromasin and monthly XGEVA shots. He says he's had women on this regemine for 10+ years. But this just doesn't sound like enough. Isn't there more aggressive treatment?

    If its ER-, he says chemo. Because I only had AC 14 years ago, He says there are lots that we can try.

    I had a friend whose sister did some sort of bone marrow procedure after bone mets 18 years ago, and is still here. Is this a possibility? I'm thinking of asking for a second opinion.

    I know I am getting way ahead of myself, but I'm trying to gather information.

    Thanks for any input,

    Kay

    Hi Kay,
    So sorry to hear
    Hi Kay,

    So sorry to hear your bad news. I too was just diagnosed with metastatic bone cancer. It is such a shock to hear this news after being cancer free for so long. My original BC (ER+) was 11/03-chemo(ACT),radiation, and Tamoxifen for 5 years; 2nd BC was 11/11 and bone metastatic cancer in 12/11. My bone cancer is throughout my skeleton (skull, ribs, spine, all areas of the hips, & femur). Please check with your doctor to see if you will be getting an IV drip for the bone biopsy. Not all patients receive this. I had to almost cancel the appointment because they were only going to give me an anesthetic shot for this. I insisted and they finally gave in. Not sure if it is because of insurance or not, but you should be insistent on an IV drip so that you are comfortable. There is no need for any kind of pain these days, you just need to ask.

    I am receiving Zometa every 4 weeks and Arimidix daily. My doctor tells me that this is the only treatment for me. There are no clinic trials at the moment for this type of cancer. I did seek another opinion but they suggested the same treatment. Although, they will radiate a specific area to reduce pain if needed. I'm going for another CT scan in April to see whether or not the meds are working.

    I wish you the best and try to stay positive...
    Karen
  • Texasgirl10
    Texasgirl10 Member Posts: 668
    #11
    squantum said:

    Hi Kay,
    So sorry to hear
    Hi Kay,

    So sorry to hear your bad news. I too was just diagnosed with metastatic bone cancer. It is such a shock to hear this news after being cancer free for so long. My original BC (ER+) was 11/03-chemo(ACT),radiation, and Tamoxifen for 5 years; 2nd BC was 11/11 and bone metastatic cancer in 12/11. My bone cancer is throughout my skeleton (skull, ribs, spine, all areas of the hips, & femur). Please check with your doctor to see if you will be getting an IV drip for the bone biopsy. Not all patients receive this. I had to almost cancel the appointment because they were only going to give me an anesthetic shot for this. I insisted and they finally gave in. Not sure if it is because of insurance or not, but you should be insistent on an IV drip so that you are comfortable. There is no need for any kind of pain these days, you just need to ask.

    I am receiving Zometa every 4 weeks and Arimidix daily. My doctor tells me that this is the only treatment for me. There are no clinic trials at the moment for this type of cancer. I did seek another opinion but they suggested the same treatment. Although, they will radiate a specific area to reduce pain if needed. I'm going for another CT scan in April to see whether or not the meds are working.

    I wish you the best and try to stay positive...
    Karen

    Praying for you
    Im so sorry to hear that your pet scan results are bad. I will be praying for you.

    Hugs,

    Dawne
  • kmikola2
    kmikola2 Member Posts: 29
    #12
    squantum said:

    Hi Kay,
    So sorry to hear
    Hi Kay,

    So sorry to hear your bad news. I too was just diagnosed with metastatic bone cancer. It is such a shock to hear this news after being cancer free for so long. My original BC (ER+) was 11/03-chemo(ACT),radiation, and Tamoxifen for 5 years; 2nd BC was 11/11 and bone metastatic cancer in 12/11. My bone cancer is throughout my skeleton (skull, ribs, spine, all areas of the hips, & femur). Please check with your doctor to see if you will be getting an IV drip for the bone biopsy. Not all patients receive this. I had to almost cancel the appointment because they were only going to give me an anesthetic shot for this. I insisted and they finally gave in. Not sure if it is because of insurance or not, but you should be insistent on an IV drip so that you are comfortable. There is no need for any kind of pain these days, you just need to ask.

    I am receiving Zometa every 4 weeks and Arimidix daily. My doctor tells me that this is the only treatment for me. There are no clinic trials at the moment for this type of cancer. I did seek another opinion but they suggested the same treatment. Although, they will radiate a specific area to reduce pain if needed. I'm going for another CT scan in April to see whether or not the meds are working.

    I wish you the best and try to stay positive...
    Karen

    Karen,
    Thanks for the
    Karen,

    Thanks for the information. Yes, it is a shock to say the least...I truly thought I was done with this. My onc said he did too, and it is very rare for this to happen. I just think getting a second opinion is probably just a smart thing to do.

    The nurse from the hospital where I'm having the bone biopsy has called and said I would be getting an IV.

    I am trying to stay positive, but just in shock. I hope things go well for your scan and the meds are working.

    Thanks for everything.

    Kay
  • kmikola2
    kmikola2 Member Posts: 29
    #13
    squantum said:

    Hi Kay,
    So sorry to hear
    Hi Kay,

    So sorry to hear your bad news. I too was just diagnosed with metastatic bone cancer. It is such a shock to hear this news after being cancer free for so long. My original BC (ER+) was 11/03-chemo(ACT),radiation, and Tamoxifen for 5 years; 2nd BC was 11/11 and bone metastatic cancer in 12/11. My bone cancer is throughout my skeleton (skull, ribs, spine, all areas of the hips, & femur). Please check with your doctor to see if you will be getting an IV drip for the bone biopsy. Not all patients receive this. I had to almost cancel the appointment because they were only going to give me an anesthetic shot for this. I insisted and they finally gave in. Not sure if it is because of insurance or not, but you should be insistent on an IV drip so that you are comfortable. There is no need for any kind of pain these days, you just need to ask.

    I am receiving Zometa every 4 weeks and Arimidix daily. My doctor tells me that this is the only treatment for me. There are no clinic trials at the moment for this type of cancer. I did seek another opinion but they suggested the same treatment. Although, they will radiate a specific area to reduce pain if needed. I'm going for another CT scan in April to see whether or not the meds are working.

    I wish you the best and try to stay positive...
    Karen

    Karen,
    Thanks for the
    Karen,

    Thanks for the information. Yes, it is a shock to say the least...I truly thought I was done with this. My onc said he did too, and it is very rare for this to happen. I just think getting a second opinion is probably just a smart thing to do.

    The nurse from the hospital where I'm having the bone biopsy has called and said I would be getting an IV.

    I am trying to stay positive, but just in shock. I hope things go well for your scan and the meds are working.

    Thanks for everything.

    Kay
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #14
    I am so very sorry and
    I am so very sorry and saddened to hear your news. I had been 22 years when I finally got my mets diagnosis, so it is indeed possible for the blasted disease to hide out that long.

    My breast surgeon, who is also a family friend, told me that, for some people, breast cancer is much like a chronic disease that is incurable, but treatable. He told me that it is quite possible that I could die from something other than breast cancer. I am planning on it!

    If your tumor is ER+, you will probably be on an oral aromatase inhibitor (either femara, arimidex or aromasin). You will also be on a bisphosphonate (xgeva or zometa). Both drugs are very important in fighting bone mets.

    I know much less about other types of cancer because mine has remained ER+. Let us know what your biopsy shows.

    I will be praying for you Kay. Big (((hugs))). And feel free to pm me if you want to!
  • Alexis F
    Alexis F Member Posts: 3,598
    #15
    Texasgirl10 said:

    Praying for you
    Im so sorry to hear that your pet scan results are bad. I will be praying for you.

    Hugs,

    Dawne

    I'm very sorry that your PET
    I'm very sorry that your PET scan results were not good. You're in my prayers.


    Hugs,

    Lex
  • Kylez
    Kylez Member Posts: 3,761 Member
    #16
    kmikola2 said:

    Karen,
    Thanks for the
    Karen,

    Thanks for the information. Yes, it is a shock to say the least...I truly thought I was done with this. My onc said he did too, and it is very rare for this to happen. I just think getting a second opinion is probably just a smart thing to do.

    The nurse from the hospital where I'm having the bone biopsy has called and said I would be getting an IV.

    I am trying to stay positive, but just in shock. I hope things go well for your scan and the meds are working.

    Thanks for everything.

    Kay

    Please stay positive Kay and
    Please stay positive Kay and know that we are here supporting you.


    Praying,

    Kylez
  • jnl
    jnl Member Posts: 3,869 Member
    #17
    kmikola2 said:

    Karen,
    Thanks for the
    Karen,

    Thanks for the information. Yes, it is a shock to say the least...I truly thought I was done with this. My onc said he did too, and it is very rare for this to happen. I just think getting a second opinion is probably just a smart thing to do.

    The nurse from the hospital where I'm having the bone biopsy has called and said I would be getting an IV.

    I am trying to stay positive, but just in shock. I hope things go well for your scan and the meds are working.

    Thanks for everything.

    Kay

    Kay, sending lots of hope,
    Kay, sending lots of hope, support, encouragement and some really big hugs!


    Leeza
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #18
    CypressCynthia said:

    I am so very sorry and
    I am so very sorry and saddened to hear your news. I had been 22 years when I finally got my mets diagnosis, so it is indeed possible for the blasted disease to hide out that long.

    My breast surgeon, who is also a family friend, told me that, for some people, breast cancer is much like a chronic disease that is incurable, but treatable. He told me that it is quite possible that I could die from something other than breast cancer. I am planning on it!

    If your tumor is ER+, you will probably be on an oral aromatase inhibitor (either femara, arimidex or aromasin). You will also be on a bisphosphonate (xgeva or zometa). Both drugs are very important in fighting bone mets.

    I know much less about other types of cancer because mine has remained ER+. Let us know what your biopsy shows.

    I will be praying for you Kay. Big (((hugs))). And feel free to pm me if you want to!

    Kay, Gentle hugs and prayers for you ..
    good information from our Sisters in PINK -- living with a recurrence, or as some
    stated a "chronic disease", also known as breast cancer.

    Please keep us posted -- as we are a family, united by the will to Survivor the
    beast.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #19
    kmikola2 said:

    If my bone biopsy shows up
    If my bone biopsy shows up as ER+, my doctor is suggesting Aromasin and monthly XGEVA shots. He says he's had women on this regemine for 10+ years. But this just doesn't sound like enough. Isn't there more aggressive treatment?

    If its ER-, he says chemo. Because I only had AC 14 years ago, He says there are lots that we can try.

    I had a friend whose sister did some sort of bone marrow procedure after bone mets 18 years ago, and is still here. Is this a possibility? I'm thinking of asking for a second opinion.

    I know I am getting way ahead of myself, but I'm trying to gather information.

    Thanks for any input,

    Kay

    Oh Kay, I am very sorry
    Oh Kay, I am very sorry about your results. I will be praying for you.


    Lots of hugs,


    Debby
  • Noel
    Noel Member Posts: 3,095 Member
    #20
    SIROD said:

    Very Consistent
    Hi Kay,

    Sorry that it's back. I had a number of years between 2nd and 3rd recurrence, so I had a PET scan after tumors and effusion was found on the CT scan (2008) and then a biopsy (VATS, as it returned in the lungs and lining). I went on hormonal therapy as I am very ER+ and mine has been the same since it began back in 1994.

    There is no need to do chemo as hormonal therapies for those who are ER+ or PR+ is the same.

    Wishing you well on this new phase of the journey,

    Best,

    Doris

    I'm so sorry Kay about your
    I'm so sorry Kay about your test results. I will be praying for you and I'm sending you a big hug today!
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #21
    missrenee said:

    Oh, Kay, I so understand your feelings
    I was just given the news (about 6 weeks ago) that my cancer has spread into my bones. I had Stage 3C ER, PR+ and HER2- diagnosed in Dec. '09. I had lumpectomy, 6 rounds of TAC and 33 rads. I had been on Arimidex for almost 18 months when the cancer returned in my bones. I couldn't believe it. I had pain in one vertebra. I had a bone scan, CT, MRI and PET done. The MRI showed diffuse mets in the spine, pelvis. The PET only showed the mets in T-12 of my spine. They then did a bone biopsy of T-12--the vertebra that hurt and it came back same as the breast cancer.

    I have just started Faslodex injections (right now every other week and then once a month) which are supposed to suppress the hormones, and a monthly infusion of Zometa for bone strengthening. This really threw me for a loop. Everything has changed.

    Please PM me if you'd like to talk more. I'm in the same boat as you, just a little sooner.

    Also, don't worry about the bone biopsy. It sounded really awful to me, but I was asleep and recovery was really uneventful with almost no pain.

    Hugs, Renee

    Like the rest of the pink
    Like the rest of the pink sisters Kay, I am so sorry about your results. This board is amazing and I hope that it can help you to handle this in some way, even if it is just to vent. We're always here for you Kay!


    Sue :{

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