PET Scans and Medicare

nancygt
nancygt Member Posts: 86
edited March 2014 in Uterine/Endometrial Cancer #1
From reading the board lately, this topic appears to affect many of us. I too am on diability and while I am very happy with my current insurance, I will have to go on Medicare mid 2012 and my other insurance will become secondary.As many of you have discovered, if Medicre deciles secondary and supplemental coverage will noy apply.
Medicare only approved PET scans less than 2 years ago and it is still for deisntaed cancers-Ovarian is there but not Uterine. They recently added thyroid so there is hope further changes will be forthcoming although we all know that higher survival rates for uterine overall make USPC and other rarer forms overlooked - the American Cancer brochure even says that while these cancers only make up 5% of cases, they account for the majority of deaths.
A couple of thoughts-is this issue a good one for us survivors to tackle, perhaps with the help of the more organized Breast Cancer or Ovarian Cancer groups? Does anyone have contacts at a national level where we might explore this.
I asked my oncologist (hematological) yesterday and he said I should discuss with my radiation oncologist as he is probably more experienced to navigate those waters. I intend to do so.
I had my first reccurrence just over a year from initial diagnosis and only 5 months from end of chemo and radiation. CT scan was done a month earlier than the 6 months as I was having some symptoms. It showed a suspicious area in para-aortic lymph nodes and they followed up with PET scan which lit up in that spot and we did needle biopsy (fun experience as I could not have any drugs due to deep position between liver and aorta). Decision was made to start IMRT "tomotherapy" immediately. Radiation oncologist did another PET scan at his facility to treatment plan and said he would eat the cost if insurer refused to pay for it. I am glad we did because the metabolic rate of the tumors had doubled in 3 weeks and 2 more small ones had appeared.I had 6 weeks of IMRT and it was successful. They did wait over 2.5 months to do follow up PET and it was clean. My doctors have agreed that we should do PET scans every 6 months since it catches tumors much smaller than CT and would have to be done as follow up anyway if suspicious areas-they want to do teat at this frequency but do not want to put me through two tests.
I am concerned when I go on medicare because a regular diagnostic PET that shows activity will probably require planning PET and then follow up PET after teatment.I am hoping that USPC combined with early recuurence and successful Tomotherapy will carry the day when I do on Medicare and I have a great pro-active doc. But I still find myself thinking about cancelling a trip planned for next April to the Galapagos isalnds in case I have to pay for several PET scans in the year. I really hate that any of us are put in that position - fulfilling dreams with shortened life span versus paying for necessary tests that should be covered.
Any other thoughts or experiences on this would be helpful. I do not post very often but read regularly and have learned a lot from the website- even my first hints of this issue and know that this community can shre expereinces with various docs and hospitals.

I am adding a blurb on a website for radiation oncology that seems to address this issue.
National Oncologic PET Registry (NOPR)
The National Oncologic PET Registry (NOPR) was developed in response to the Centers for Medicare and Medicaid Services (CMS) proposal to expand coverage for FDG PET to include cancers and indications not presently eligible for Medicare reimbursement. Medicare reimbursement for these cancers is available if the patient's referring physician and the imaging provider submit data to a clinical registry to assess the impact of PET on cancer patient management. The NOPR implements this registry for CMS.

The NOPR is sponsored by the Academy of Molecular Imaging (AMI) and is managed by the American College of Radiology (ACR) through the American College of Radiology Imaging Network (ACRIN).

The NOPR is endorsed by the American College of Radiology (ACR), the American Society for Clinical Oncology (ASCO), and the Society for Nuclear Medicine (SNM).

Learn more about the National Oncologic PET Registry (NOPR) by visiting the web site: www.cancerpetregistry.org.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    Important post for those considering Social Security Disability.
    I recently applied for SS Disability, but I am not sure I will accept it if approved. What would stop me from taking it is that after 2 years of collecting SSD, you are automatically enrolled with Medicare as your primary health insurance. I have been getting CT/PET scans every 3 months since my recurrence, fully covered by my current very expensive private insurance, and I would hate to lose that important diagnostic tool. I hate to think of myself as 'disabled and unable to work' when I have been such a productive hard worker since I was a teenager. But with my business (www.procopiofundraising.com) I have to be able to type almost nonstop 8 to 10 hours a day, and now that I am on Doxil, I know my hands can't take that. On January 1st I am giving the final share of my company to my 2 sons, and will just collect "sick leave pay" from my company until my disability comes in, if it gets approved. I have been training and reassigning and hiring in anticiaption of me not being able to work, ever since my cancer diagnosis 2 years ago. I am glad i have been able to give them my business while I am still alive to give advice if they have trouble with anything, and to gradually transition our oldest clients seamlessly to the new corporate structure.

    But how lovely to be worrying about something that won't occur for 2 full years?! How I love to think that I will be alive still 2 years from now! Those of you with recurrence know what I'm saying here.
  • upsofloating
    upsofloating Member Posts: 466 Member
    #3
    lindaprocopio said:

    Important post for those considering Social Security Disability.
    I recently applied for SS Disability, but I am not sure I will accept it if approved. What would stop me from taking it is that after 2 years of collecting SSD, you are automatically enrolled with Medicare as your primary health insurance. I have been getting CT/PET scans every 3 months since my recurrence, fully covered by my current very expensive private insurance, and I would hate to lose that important diagnostic tool. I hate to think of myself as 'disabled and unable to work' when I have been such a productive hard worker since I was a teenager. But with my business (www.procopiofundraising.com) I have to be able to type almost nonstop 8 to 10 hours a day, and now that I am on Doxil, I know my hands can't take that. On January 1st I am giving the final share of my company to my 2 sons, and will just collect "sick leave pay" from my company until my disability comes in, if it gets approved. I have been training and reassigning and hiring in anticiaption of me not being able to work, ever since my cancer diagnosis 2 years ago. I am glad i have been able to give them my business while I am still alive to give advice if they have trouble with anything, and to gradually transition our oldest clients seamlessly to the new corporate structure.

    But how lovely to be worrying about something that won't occur for 2 full years?! How I love to think that I will be alive still 2 years from now! Those of you with recurrence know what I'm saying here.

    Linda,
    Although enrolment in
    Linda,
    Although enrolment in Medicare is automatic at. 2 yr point, you do not have to accept it. One can choose to decline and pick it up at a later date. There is a penalty that makes premiums higher the longer one delays. But if you prefer your own ins, you can go that route.
    Annie
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #4
    upsofloating said:

    Linda,
    Although enrolment in
    Linda,
    Although enrolment in Medicare is automatic at. 2 yr point, you do not have to accept it. One can choose to decline and pick it up at a later date. There is a penalty that makes premiums higher the longer one delays. But if you prefer your own ins, you can go that route.
    Annie

    Good Info, Annie and Nancy
    Hi Annie and Nancy,

    I wasn't aware that you could decline Medicare if on disability. Good to know. If I am approved for disability (applied a month ago) then two years would bring me to almost my 64th birthday. My retirement insurance is exactly the same as I am covered with now. Guess I will put the pencil to paper when the time comes, presuming I am approved. Thanks for the info.

    I also wasn't aware of the PET scan restriction when on Medicare. Thanks, Nancy for that info.

    As if we don't have enough to deal with...

    Peace and hope,

    JJ
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #5
    Always Hopeful said:

    Good Info, Annie and Nancy
    Hi Annie and Nancy,

    I wasn't aware that you could decline Medicare if on disability. Good to know. If I am approved for disability (applied a month ago) then two years would bring me to almost my 64th birthday. My retirement insurance is exactly the same as I am covered with now. Guess I will put the pencil to paper when the time comes, presuming I am approved. Thanks for the info.

    I also wasn't aware of the PET scan restriction when on Medicare. Thanks, Nancy for that info.

    As if we don't have enough to deal with...

    Peace and hope,

    JJ

    thanks for the info
    Well, I am in the same boat - just applied for SSDi yesterday online. This PET scan issue is troublesome. I thought the NOPR helped approve PETs for those on medicare? Guess I had that one wrong. Isn't there an appeal process or special consideration if you have had recurrence like my insurance - which used to not approve PET but now they allow because we are dealing with recurrence.

    I think we should advocate for PETs AND that UPSC be lumped in with ovarian (me being selfish on that one since i have UPSC)

    Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #6
    daisy366 said:

    thanks for the info
    Well, I am in the same boat - just applied for SSDi yesterday online. This PET scan issue is troublesome. I thought the NOPR helped approve PETs for those on medicare? Guess I had that one wrong. Isn't there an appeal process or special consideration if you have had recurrence like my insurance - which used to not approve PET but now they allow because we are dealing with recurrence.

    I think we should advocate for PETs AND that UPSC be lumped in with ovarian (me being selfish on that one since i have UPSC)

    Mary Ann

    pet scan approval

    i have medicare (for age, not disability) and am automatically covered for part a, hospitalization. my other primary insurance is through my partner and is blue shield. blue shield has consistently denied my doctor's request for a pet scan. she appealed, and finally won, so now i can have a pet scan before the end of this year. that's it, then if i should want/need another, we have to go through a similar process. because i only have medicare part a, it's not involved in scans, etc.

    fyi, my medicare is based on age, not retirement status. i work and can make as much as i can without any medicare deductions. of course, if i had known i'd get cancer, might have taken the social security earlier, but was betting on living a long life and working a long time. who knows, maybe that will still happen........

    at this point, i have no idea whether my slightly enlarged para aortic node is malignant or not. my health providers are evenly divided about it. i'm thinking now that even if it lights up with the pet scan, if it hasn't changed in size/shape, i'm leaving it alone. i'll know more towards the end of november when i have my ca 125 and ct/pet scans. i have to say this year without treatment has been wonderful.

    i agree with mary ann, that because ovarian and upsc are so similar, they should be lumped together. in fact, none of our treatments should be insurance-driven. it's just crazy how it is.

    good luck to everyone who has applied for ssdi; you all deserve it, and shouldn't have to wait so bloody long to get it!

    sisterhood, magggie
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #7
    maggie_wilson said:

    pet scan approval

    i have medicare (for age, not disability) and am automatically covered for part a, hospitalization. my other primary insurance is through my partner and is blue shield. blue shield has consistently denied my doctor's request for a pet scan. she appealed, and finally won, so now i can have a pet scan before the end of this year. that's it, then if i should want/need another, we have to go through a similar process. because i only have medicare part a, it's not involved in scans, etc.

    fyi, my medicare is based on age, not retirement status. i work and can make as much as i can without any medicare deductions. of course, if i had known i'd get cancer, might have taken the social security earlier, but was betting on living a long life and working a long time. who knows, maybe that will still happen........

    at this point, i have no idea whether my slightly enlarged para aortic node is malignant or not. my health providers are evenly divided about it. i'm thinking now that even if it lights up with the pet scan, if it hasn't changed in size/shape, i'm leaving it alone. i'll know more towards the end of november when i have my ca 125 and ct/pet scans. i have to say this year without treatment has been wonderful.

    i agree with mary ann, that because ovarian and upsc are so similar, they should be lumped together. in fact, none of our treatments should be insurance-driven. it's just crazy how it is.

    good luck to everyone who has applied for ssdi; you all deserve it, and shouldn't have to wait so bloody long to get it!

    sisterhood, magggie

    So let me understand
    Hi Ladies:

    Let me understand this. Are we saying that ovarian's get permitted to have different testings approved than upsc?

    If that is the case, then now I see how my treatment came about. Although I was diagnosed with endometrial, they always said they treated me as ovarian. This was probably so they could get the approval of certain testings that they wanted done. What do you think?

    Also, if that is the case, it shouldn't be. All gyne should have all treatment available across the board.

    Kathy
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #8
    Kaleena said:

    So let me understand
    Hi Ladies:

    Let me understand this. Are we saying that ovarian's get permitted to have different testings approved than upsc?

    If that is the case, then now I see how my treatment came about. Although I was diagnosed with endometrial, they always said they treated me as ovarian. This was probably so they could get the approval of certain testings that they wanted done. What do you think?

    Also, if that is the case, it shouldn't be. All gyne should have all treatment available across the board.

    Kathy

    kathy

    it's not clear if they treated you for ovarian or endometrial. i have upsc, and they called it ovarian, and when i'd correct them, they'd basically say it was the same--i'm quite sure the treatment in the bay area is the same for both, though i've heard of other treatments for ovarian. in any case, when it comes to requesting scans, tests, etc., i'm quite sure they have to name whatever you have correctly, since there is really a difference in how the insurance companies treat different cancers. strange, wrong, but true. which, is why, as i've posted, my doctor had to fight to get a pet scan for me--and just this once in a two month window!

    hope you're doing well.

    sisterhood,
    maggie
  • nancygt
    nancygt Member Posts: 86
    #9
    lindaprocopio said:

    Important post for those considering Social Security Disability.
    I recently applied for SS Disability, but I am not sure I will accept it if approved. What would stop me from taking it is that after 2 years of collecting SSD, you are automatically enrolled with Medicare as your primary health insurance. I have been getting CT/PET scans every 3 months since my recurrence, fully covered by my current very expensive private insurance, and I would hate to lose that important diagnostic tool. I hate to think of myself as 'disabled and unable to work' when I have been such a productive hard worker since I was a teenager. But with my business (www.procopiofundraising.com) I have to be able to type almost nonstop 8 to 10 hours a day, and now that I am on Doxil, I know my hands can't take that. On January 1st I am giving the final share of my company to my 2 sons, and will just collect "sick leave pay" from my company until my disability comes in, if it gets approved. I have been training and reassigning and hiring in anticiaption of me not being able to work, ever since my cancer diagnosis 2 years ago. I am glad i have been able to give them my business while I am still alive to give advice if they have trouble with anything, and to gradually transition our oldest clients seamlessly to the new corporate structure.

    But how lovely to be worrying about something that won't occur for 2 full years?! How I love to think that I will be alive still 2 years from now! Those of you with recurrence know what I'm saying here.

    PET Scans and Medicare
    Just to add to Linda's comments on being automatically enrolled in Medicare and for some of you that would like to decline or reject Medicare, check with your insurer-my friend who had lung cancer and Blue Cross through Cobra with former employer was told she could not reject. Many of us receive summaries of our medical insurance plans rather than the full policy and terms -especially with group or employer insurance. I went online and printed the full plan(voluminous!) and lo and behold, I am required to sign up for Medicare, whether age or disability driven and they become secondary or I lose coverage.So check your plans.
    And for those of you that have had doctors tell you that we essentially are same as Ovarian, that is true and my doctors tell me the same. But in cancers where PET scans are not requiring special approval for Medicare, Ovarian is on the Medicare list and Uterine is not. I am reluctant to trust the bureaucracy wihout someone lighting a fire under them.
    And while Obamacare may help some things (for example inability to refuse clinical trials coverage as cited in earlier postings), I have no idea if changes are made concerning PET scans. And not to sound cynical, I hope to be alive when I face Medicare in 6 months but since Obamcare provisions have few changes until 2014, I am more realistic about 4 years from now - especially since my CA 125 has been fairly reliable indicator for me and I just found out this a.m. it doubled from 50 to 100 just 5 months out from tomotherapy for first recurrence.
  • VanessaN
    VanessaN Member Posts: 8
    #10
    PET and medicare
    I have somewhat of the same problem. I am on medicaid and my good it it hard to find drs that take it mainly the specialist are hard to find, Im getting a PET/CT done next week and I have to travel 2 hours to get it done its crazy. Im mean I am glad to have some type of insurance but its hard to find specialist.
    I wish you all the best!
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #11
    VanessaN said:

    PET and medicare
    I have somewhat of the same problem. I am on medicaid and my good it it hard to find drs that take it mainly the specialist are hard to find, Im getting a PET/CT done next week and I have to travel 2 hours to get it done its crazy. Im mean I am glad to have some type of insurance but its hard to find specialist.
    I wish you all the best!

    Nancy and Kaleena
    Correct regarding the PET being approved for ovarian and not uterine - at least by Aetna my insurer. I got the protocol bulletin when I was appealing and there it was. It's a fight!! Some "genius" made these decisions which is resulting in more money being spent - I had to get CT scans before PET would be approved so the CTs were a waste of money and more toxic exposure for my sick cancerous body to deal with.

    They are paying now but my doc sometimes still has to fight for it via a "peer to peer" consult. The system is broken in this area anyway. The insurance companies are playing doctor.

    Mary Ann
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #12
    daisy366 said:

    Nancy and Kaleena
    Correct regarding the PET being approved for ovarian and not uterine - at least by Aetna my insurer. I got the protocol bulletin when I was appealing and there it was. It's a fight!! Some "genius" made these decisions which is resulting in more money being spent - I had to get CT scans before PET would be approved so the CTs were a waste of money and more toxic exposure for my sick cancerous body to deal with.

    They are paying now but my doc sometimes still has to fight for it via a "peer to peer" consult. The system is broken in this area anyway. The insurance companies are playing doctor.

    Mary Ann

    CT/Pet Scans
    I've only had one PET but it was preceded by a CT scan. Basically, both were done at one time. Is that not the way they are done?

    Peace and hope, JJ
  • upsofloating
    upsofloating Member Posts: 466 Member
    #13
    Always Hopeful said:

    CT/Pet Scans
    I've only had one PET but it was preceded by a CT scan. Basically, both were done at one time. Is that not the way they are done?

    Peace and hope, JJ

    PET scans can be done with a
    PET scans can be done with a CT at facilities that do both or can be done as PET only. I've had them done both ways. My last PET was since I started Medicare coverage and was denied. The facility where I had it done was able to find a research project that was being done to determine efficacy of PET scans for other cancers. Required some paperwork, etc., but I just had to sign the papers. I'm treated at a University Medical Center. It was definitely a help in planning treatment as CT was clean but CA125 had started to creep up after returning to normal range for 2 months prior.

    My initial gyn-onc listed my diagnosis as Ovarian CA but new one just describes it as generic Uterine CA. My original diagnosis was equivocal due to no specific point of origin, but because of a prior D&C (2 yrs before for heavy bleeding), it was felt diagnosis was missed at that time and assumed to be UPSC. As much as I'd like to believe they have a good handle on all this, I think it's quite a "crap shoot" and we just go with what seems to work.
    Annie
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #14
    upsofloating said:

    PET scans can be done with a
    PET scans can be done with a CT at facilities that do both or can be done as PET only. I've had them done both ways. My last PET was since I started Medicare coverage and was denied. The facility where I had it done was able to find a research project that was being done to determine efficacy of PET scans for other cancers. Required some paperwork, etc., but I just had to sign the papers. I'm treated at a University Medical Center. It was definitely a help in planning treatment as CT was clean but CA125 had started to creep up after returning to normal range for 2 months prior.

    My initial gyn-onc listed my diagnosis as Ovarian CA but new one just describes it as generic Uterine CA. My original diagnosis was equivocal due to no specific point of origin, but because of a prior D&C (2 yrs before for heavy bleeding), it was felt diagnosis was missed at that time and assumed to be UPSC. As much as I'd like to believe they have a good handle on all this, I think it's quite a "crap shoot" and we just go with what seems to work.
    Annie

    How much does a PET scan cost?
    I'm 63 1/2. Medicare is looming soon. My current insurance will become secondary. Does anyone know how much a PET scan costs (if I need one and it's denied)?

    Suzanne
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #15
    Double Whammy said:

    How much does a PET scan cost?
    I'm 63 1/2. Medicare is looming soon. My current insurance will become secondary. Does anyone know how much a PET scan costs (if I need one and it's denied)?

    Suzanne

    My PET Scans were I believe
    My PET Scans were I believe $14,000. I am getting one done on Tuesday. I will see if it changed. Some PETs are with a CT too. My last one was just a PET scan, but all of my previous ones with PET/CT scans. I just had one in June and will probably get another one in six months after Tuesday's PET.

    Kathy
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #16
    Kaleena said:

    My PET Scans were I believe
    My PET Scans were I believe $14,000. I am getting one done on Tuesday. I will see if it changed. Some PETs are with a CT too. My last one was just a PET scan, but all of my previous ones with PET/CT scans. I just had one in June and will probably get another one in six months after Tuesday's PET.

    Kathy

    Looking forward to good news
    Good luck on Tuesday, Kathy. Praying that all will be well!

    Peace and hope,

    JJ
  • nancygt
    nancygt Member Posts: 86
    #17
    Double Whammy said:

    How much does a PET scan cost?
    I'm 63 1/2. Medicare is looming soon. My current insurance will become secondary. Does anyone know how much a PET scan costs (if I need one and it's denied)?

    Suzanne

    PET Scan cost
    I looked back at the one I had earlier this year and it was billed at $5850 and paid at 5650-I feel that this must be close because I have United Healthcare on a Preferred Provider Network and there are many charges where they cut the gross billing by as much as 70% - for example-first surgery was billed at close to $100,000 for all providers and they patd $30,000. While there may be regional and facility differences, they should charge the same to cash patients that they charge providers-California actually passed a law along those lines.Since Medicare pays reasonable and customary, secondary insurance is typically using a similar amount - I will check with my best friend who has lung cancer to see what Medicare is paying on her scans as that would be interesting to compare - she has lung cancer and just had brain surgery.Also she goes to Emory and they have in the last couple of years been much higher than my facilities here in Tallahassee.
    Also I am going to yalk to my radiologist about the success he has had in getting denials appealed. He is great and even told me when he felt he had to do second PET in 4 weeks to plan my treatment that he would eat the cost if my insurer denied and sure enough he did.So any practical info we can shae with each other here is good and I will continue to post as I get information.
    For now, I am somewhat focused on potential second recuurrence as my CA 125 has been very reliable indicator (jumped from 9.5 to 179 at first reccurrence) and it had rocked along for 2 tests at 50 but now doubled to 100 - and of course as luck would have it, my doc is out til Wed and probably hasn't sen it. So include me in your rayers as 2nd recurrence before making it 24 months from diagnosis is scary prospect.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #18
    nancygt said:

    PET Scan cost
    I looked back at the one I had earlier this year and it was billed at $5850 and paid at 5650-I feel that this must be close because I have United Healthcare on a Preferred Provider Network and there are many charges where they cut the gross billing by as much as 70% - for example-first surgery was billed at close to $100,000 for all providers and they patd $30,000. While there may be regional and facility differences, they should charge the same to cash patients that they charge providers-California actually passed a law along those lines.Since Medicare pays reasonable and customary, secondary insurance is typically using a similar amount - I will check with my best friend who has lung cancer to see what Medicare is paying on her scans as that would be interesting to compare - she has lung cancer and just had brain surgery.Also she goes to Emory and they have in the last couple of years been much higher than my facilities here in Tallahassee.
    Also I am going to yalk to my radiologist about the success he has had in getting denials appealed. He is great and even told me when he felt he had to do second PET in 4 weeks to plan my treatment that he would eat the cost if my insurer denied and sure enough he did.So any practical info we can shae with each other here is good and I will continue to post as I get information.
    For now, I am somewhat focused on potential second recuurrence as my CA 125 has been very reliable indicator (jumped from 9.5 to 179 at first reccurrence) and it had rocked along for 2 tests at 50 but now doubled to 100 - and of course as luck would have it, my doc is out til Wed and probably hasn't sen it. So include me in your rayers as 2nd recurrence before making it 24 months from diagnosis is scary prospect.

    Nancy: I also had 2 recurrences within 2 years of diagnosis.
    Nancy, I have had 2 recurrences within 2 years of my initial surgery date, and share your concerns for what that means to my prognosis. With me, the 2nd recurrence was that same lymph nodes lighting up again. (They lit up on a PET in November 2009, diaappeared on the next PET after 10 rounds of weekly taxol, then lit up again on the next PET after another spike in CA125.) I don't know if I can take any comfort in that the cancer returned to exactly the same places as before and think of this as the SAME recurrence as the 1st one, and not another new recurrence. What scares me more than 2 recurrences within 2 years is the fact that my CA125 continues to rise this time, even though I am currently getting chemo. Now THAT's scary. No one wants to takew chemo and all the damage it does to you and find out it didn't work at all!

    But there's nothing I can do but play out this hand, take one more infusion of Doxil (3rd infusion scheduled for November 11th), and then do another CT/PET and see what's up. I try not to think about it because then I think every twinge I feel is cancer progression. It's a beautiful fall day and I will do all I can to enjoy it and not 'borrow trouble' by worrying about tomorrow. Please try to do the same. ((((Nancy))))
  • nancygt
    nancygt Member Posts: 86
    #19
    lindaprocopio said:

    Nancy: I also had 2 recurrences within 2 years of diagnosis.
    Nancy, I have had 2 recurrences within 2 years of my initial surgery date, and share your concerns for what that means to my prognosis. With me, the 2nd recurrence was that same lymph nodes lighting up again. (They lit up on a PET in November 2009, diaappeared on the next PET after 10 rounds of weekly taxol, then lit up again on the next PET after another spike in CA125.) I don't know if I can take any comfort in that the cancer returned to exactly the same places as before and think of this as the SAME recurrence as the 1st one, and not another new recurrence. What scares me more than 2 recurrences within 2 years is the fact that my CA125 continues to rise this time, even though I am currently getting chemo. Now THAT's scary. No one wants to takew chemo and all the damage it does to you and find out it didn't work at all!

    But there's nothing I can do but play out this hand, take one more infusion of Doxil (3rd infusion scheduled for November 11th), and then do another CT/PET and see what's up. I try not to think about it because then I think every twinge I feel is cancer progression. It's a beautiful fall day and I will do all I can to enjoy it and not 'borrow trouble' by worrying about tomorrow. Please try to do the same. ((((Nancy))))

    enjoy your responses
    I always enoy your responses as you seem to study and do your homework and then go out and enjoy life.After radiation (IMRT) to paraaortic lymph nodes ending May 1, I had normal PET in July.CA 125 held around 50 for 2 tests and now jumped to 100-since it has been reliable indicator for me and did double, I have PET scheduled for next Tuesday. I believe my doc suspects similar circumstance to your-recurrence in that same area of lymph nodes.They may not be able to do radiation again so soon in same area and if it is a recurrence, I will probably face Chemo-he has mentioned Cisplatin. I am curious if you have had anyone suggest tissue assay where they test tumor tissue for response to various chemo agents in a lab and tell you if certain ones are more or less likely to have efficacy . I have a friend with Stage 4 lung who is pursuing this after multiple chemos with Platinum, taxol and Gemzar. She has survived 5 years with Stage 4 (Squamous cell) probably because she is a non smoker but all the treatments have taken their toll on her body and I believe they want to be selective. Just curious and I may post that query later. Also I go over to the Ovarian web site to read since our cancer is much closer to tha and I get inspiratin there as there are women who have fought multiple recuurences successfully, albeit with the highs and lows of livng with chronic cancer and chronic treatment.
    But each time I get more patient - I am visiting my niece (more like my daughter ) in Idaho for over a week afer the PET and have decided to enjoy that trip wthout pressing for results as I have an early a.m. appointment with my doc on the Mon after Thanksgiving. Not my ususal nature but I do pray regularly for patience. For now I am gong to go out because it is a glorious 80 degree day wih high blue sky and enjoy the moment - it will be in my little two seater convertible I bought in July afer my clean PET. I may not be so extravagant next time but I found just what I wanted in a seven year old car with only 50M miles and I absloutely love it and you only go around once (or maybe 3/4 of a time for many of us -ha,ha, cancer joke).
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #20
    nancygt said:

    enjoy your responses
    I always enoy your responses as you seem to study and do your homework and then go out and enjoy life.After radiation (IMRT) to paraaortic lymph nodes ending May 1, I had normal PET in July.CA 125 held around 50 for 2 tests and now jumped to 100-since it has been reliable indicator for me and did double, I have PET scheduled for next Tuesday. I believe my doc suspects similar circumstance to your-recurrence in that same area of lymph nodes.They may not be able to do radiation again so soon in same area and if it is a recurrence, I will probably face Chemo-he has mentioned Cisplatin. I am curious if you have had anyone suggest tissue assay where they test tumor tissue for response to various chemo agents in a lab and tell you if certain ones are more or less likely to have efficacy . I have a friend with Stage 4 lung who is pursuing this after multiple chemos with Platinum, taxol and Gemzar. She has survived 5 years with Stage 4 (Squamous cell) probably because she is a non smoker but all the treatments have taken their toll on her body and I believe they want to be selective. Just curious and I may post that query later. Also I go over to the Ovarian web site to read since our cancer is much closer to tha and I get inspiratin there as there are women who have fought multiple recuurences successfully, albeit with the highs and lows of livng with chronic cancer and chronic treatment.
    But each time I get more patient - I am visiting my niece (more like my daughter ) in Idaho for over a week afer the PET and have decided to enjoy that trip wthout pressing for results as I have an early a.m. appointment with my doc on the Mon after Thanksgiving. Not my ususal nature but I do pray regularly for patience. For now I am gong to go out because it is a glorious 80 degree day wih high blue sky and enjoy the moment - it will be in my little two seater convertible I bought in July afer my clean PET. I may not be so extravagant next time but I found just what I wanted in a seven year old car with only 50M miles and I absloutely love it and you only go around once (or maybe 3/4 of a time for many of us -ha,ha, cancer joke).

    Nancy
    Hi,

    I think you have a wonderful attitude - live in the moment, enjoy life, treat yourself (awesome car and seems not too extravagant to me).

    I hope your tests are negative. I am dealing with UPSC recurrence also and finishing RT and CT to treat supraclavicular lymph node involvement after over a year NED. But we do what we have to do, like you said.

    Re: assay. DEFINITELY. This should be done at original surgery and I would hope any subsequent. I requested when my node was biopsied in May but was told not enough tissue to test. I just finished 7 rounds of carboplatin in conjunction with 35 tomo RT. Pretty grueling regime. Praying it kills Chester (my name for the beast) and any friends he has!!!

    Many blessings to you. Mary Ann

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