CT After Chemo

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  • california_artist
    california_artist Member Posts: 816 Member
    Fayard said:

    I am glad everything worked
    I am glad everything worked out well for you.
    My uterus was the only one infected with the cancer, which also invaded the myometrium 9mm of 14 mm. They took out 58 lymph nodes, and fortunately none was infected.
    My doctor also wanted me to have treatment to prevent recurrence by killing any possible cell that might to have escaped.

    I am still wondering this:
    Fayard has said they took out 58 lympn nodes, and furtunately none was infected.

    My question is still, WHY take out those lymph nodes if you intent on using the same treatment whether they contain cancer or not.

    I don't get it. Anyone know the reasoning behind this.

    When I go to a doctor and they want to do any test, my first question is, "and what will you do with that information? How will it effect my treatment?" They say how, and then ask-- and then what will you do. I keep on asking til we get to the end of the scenerio, and if I know I will not approve of the end action, I don't approve the test.

    Some times they'll want to do tests just to see if it's what they think and then you find out there is not treatment. No treatment.. No test.

    I'm pretty sure they look at the uterus while you are in surgery so they would have known how far the cancer had invaded and would have decided on treatment, simply based on that info.

    Sorry Fayard to be discussing your care, but we have been talking about this situation for a bit now and still wondering.

    The treatment you got is the standard for prevneting recurrnece, I just was wondering about the lymph node removal.
  • Rewriter
    Rewriter Member Posts: 493

    I am still wondering this:
    Fayard has said they took out 58 lympn nodes, and furtunately none was infected.

    My question is still, WHY take out those lymph nodes if you intent on using the same treatment whether they contain cancer or not.

    I don't get it. Anyone know the reasoning behind this.

    When I go to a doctor and they want to do any test, my first question is, "and what will you do with that information? How will it effect my treatment?" They say how, and then ask-- and then what will you do. I keep on asking til we get to the end of the scenerio, and if I know I will not approve of the end action, I don't approve the test.

    Some times they'll want to do tests just to see if it's what they think and then you find out there is not treatment. No treatment.. No test.

    I'm pretty sure they look at the uterus while you are in surgery so they would have known how far the cancer had invaded and would have decided on treatment, simply based on that info.

    Sorry Fayard to be discussing your care, but we have been talking about this situation for a bit now and still wondering.

    The treatment you got is the standard for prevneting recurrnece, I just was wondering about the lymph node removal.

    lymph node removal and staging
    I remember reading--almost three years ago, and my memory ain't what it used to be--that lymph node removal in the diagnosis of UPSC helped determine staging, treatment, and follow-up monitoring. Prior to the use of lymphadenectomy, doctors did not really know with accuracy the correct stage of the disease. This is a big reason why statistics (lies, damn lies, etc.) prior to the 2005 adoption of the Yale treatment protocol, which included lymph node removal in determining accurate stage, were so grim; and what was called Stage 1a, for example, was NOT what we call Stage 1a now.


    Thus, with the accuracy in staging that comes with lymph node removal, women with USPC are given a great deal more hope, their treatment is more targeted, and the medical community has more information about who might recur and who might not. Also, some women are spared certain treatments that may be determined unnecessary.

    Nevertheless, Claudia, it seems that the entity that gains the greatest benefit from the practice of lymph node removal is the medical community, and not the women with the disease. I completely agree with you that it seems as if too many lymph nodes are being removed, thus impairing the body's ability to fight further infection. The important thing, I guess, is to keep asking our doctors HOW they are going to use the information and HOW the information will affect our treatment.

    I don't have the time right now to think this all through, so there may be lots of flaws in what I am saying. Claudia, I'm looking forward to having you point them out (seriously).

    Love,

    Jill
  • Kaleena
    Kaleena Member Posts: 2,064 Member

    I am still wondering this:
    Fayard has said they took out 58 lympn nodes, and furtunately none was infected.

    My question is still, WHY take out those lymph nodes if you intent on using the same treatment whether they contain cancer or not.

    I don't get it. Anyone know the reasoning behind this.

    When I go to a doctor and they want to do any test, my first question is, "and what will you do with that information? How will it effect my treatment?" They say how, and then ask-- and then what will you do. I keep on asking til we get to the end of the scenerio, and if I know I will not approve of the end action, I don't approve the test.

    Some times they'll want to do tests just to see if it's what they think and then you find out there is not treatment. No treatment.. No test.

    I'm pretty sure they look at the uterus while you are in surgery so they would have known how far the cancer had invaded and would have decided on treatment, simply based on that info.

    Sorry Fayard to be discussing your care, but we have been talking about this situation for a bit now and still wondering.

    The treatment you got is the standard for prevneting recurrnece, I just was wondering about the lymph node removal.

    Claudia,
    When I had my

    Claudia,

    When I had my hysterectomy done, my gyn had a gyn/onc assist him (not that I had cancer), only because he was his friend and that he was good at repairing in case they nipped a bowel or bladder (by the way they did nic my bladder). Both doctors did not see any cancer at that time and were both surprised when the pathology came back. (I guess they always check stuff they removed).

    It was then that I had the staging surgery at which time they removed lymph nodes, appendix, mementum??. All washings were clear and everything else was negative.

    My husband still believes that there was never any cancer and somewhere the pathology report was in error. Although I did ask for my slides when I went to a doctor out of state, how can one be sure that the specimen was actually mine if there was a mistake right at the beginning?

    And if everything was clear and negative, why did I have to get a port when I was just getting preventative treatment anyway? And why did they keep putting me off to have it removed? Then another doctor (seeing I was getting near my 5 yr mark) finally takes more than 5 minutes with me and says that he sees something on my CT scan. (which had been there since the beginning). All questions I should have asked but was too new and too scared at the time.

    But when in 2009 I refused to get chemo for that spot (after I was told I would get chemo, surgery and would be wearing a permanent colostomy), he writes on the chart that I was seeking help elsewhere. By the way, I did have that spot removed. It was negative. I did not have chemo and I do not have a colostomy.

    I ask so many questions now and you basically have to look after yourself. I do schedule or request scans and prior would ask for blood tests prior to my doctor visit so that the reports would be there when I saw him for a check-up. Instead of going for a check-up then getting tests done and then waiting for results. This way, if you have questions, you can ask the doctor then and there.

    With regard to lymph node removal, during my last surgery in 2010, they did remove a lymph nodes in the area in and around the tumor since I did have a positive biopsy prior to surgery. Only one lymph node had microscopic cells but since it was removed no real treatment was required. I just had two PET scans since then and am supposed to get one now but ( new insurance denied it).
  • california_artist
    california_artist Member Posts: 816 Member
    Kaleena said:

    Claudia,
    When I had my

    Claudia,

    When I had my hysterectomy done, my gyn had a gyn/onc assist him (not that I had cancer), only because he was his friend and that he was good at repairing in case they nipped a bowel or bladder (by the way they did nic my bladder). Both doctors did not see any cancer at that time and were both surprised when the pathology came back. (I guess they always check stuff they removed).

    It was then that I had the staging surgery at which time they removed lymph nodes, appendix, mementum??. All washings were clear and everything else was negative.

    My husband still believes that there was never any cancer and somewhere the pathology report was in error. Although I did ask for my slides when I went to a doctor out of state, how can one be sure that the specimen was actually mine if there was a mistake right at the beginning?

    And if everything was clear and negative, why did I have to get a port when I was just getting preventative treatment anyway? And why did they keep putting me off to have it removed? Then another doctor (seeing I was getting near my 5 yr mark) finally takes more than 5 minutes with me and says that he sees something on my CT scan. (which had been there since the beginning). All questions I should have asked but was too new and too scared at the time.

    But when in 2009 I refused to get chemo for that spot (after I was told I would get chemo, surgery and would be wearing a permanent colostomy), he writes on the chart that I was seeking help elsewhere. By the way, I did have that spot removed. It was negative. I did not have chemo and I do not have a colostomy.

    I ask so many questions now and you basically have to look after yourself. I do schedule or request scans and prior would ask for blood tests prior to my doctor visit so that the reports would be there when I saw him for a check-up. Instead of going for a check-up then getting tests done and then waiting for results. This way, if you have questions, you can ask the doctor then and there.

    With regard to lymph node removal, during my last surgery in 2010, they did remove a lymph nodes in the area in and around the tumor since I did have a positive biopsy prior to surgery. Only one lymph node had microscopic cells but since it was removed no real treatment was required. I just had two PET scans since then and am supposed to get one now but ( new insurance denied it).

    Fayard
    Hey, I hope you didn't feel like I was suggesting you should have done more, I wasn't at all. I was just wondering why the practice continued. And I so agree about looking at things prior to the doctor's appointment so that you can know the questions you want answers to.

    When I went to the local oncologist to review my reports after refusing treatment from the original oncologist who refused to order a PET/CT scan, he came into the room and had me wait while he read the report for the first time. He said everything looked alright. I asked about the lymph nodes that were enlarged. He said there was only one and we could get a CT in a month and then continue with CT's everytwo months. Well, first of all I had read the report and there were two lymph nodes that were growing, not one, so I corrected him again. He still said there was only one. Ya know, at that point, what can one say. If the doctor not only doesn't even bother to look at the report before coming in the room and then can't even read the report, what's really the point? He didn't want to do an exam. Nothing. He just wanted me to come in every two months and get exposed to a heap of radiation. He got paid for every CT he ordered come to find out. Haven't ever been back to him. Have had my reg gyno order labs and PET/Ct's yearly.
  • Fayard
    Fayard Member Posts: 438

    Fayard
    Hey, I hope you didn't feel like I was suggesting you should have done more, I wasn't at all. I was just wondering why the practice continued. And I so agree about looking at things prior to the doctor's appointment so that you can know the questions you want answers to.

    When I went to the local oncologist to review my reports after refusing treatment from the original oncologist who refused to order a PET/CT scan, he came into the room and had me wait while he read the report for the first time. He said everything looked alright. I asked about the lymph nodes that were enlarged. He said there was only one and we could get a CT in a month and then continue with CT's everytwo months. Well, first of all I had read the report and there were two lymph nodes that were growing, not one, so I corrected him again. He still said there was only one. Ya know, at that point, what can one say. If the doctor not only doesn't even bother to look at the report before coming in the room and then can't even read the report, what's really the point? He didn't want to do an exam. Nothing. He just wanted me to come in every two months and get exposed to a heap of radiation. He got paid for every CT he ordered come to find out. Haven't ever been back to him. Have had my reg gyno order labs and PET/Ct's yearly.

    I greatly appreciate
    I greatly appreciate everyone's input.
    They removed 58 lymph nodes because the tumor developed in an unusual place: narrow part of the uterus. It was very closed to the walls and invaded the myometrium touching the cervix.

    The doctor removed all lymph nodes near the area affected and potentially affected by the tumor. The areas where he removed the most were left and right of the pelvis, 13 and 14.

    When my doctor first found the tumor, which I had to suggest an ultrasound of the pelvis, she did a biopsy and determined cancer with well differentiated cells. That was partially false, since the final biopsy, after surgery, reflected clear cell poorly differentiated. The tumor was growing fast.
    I do not remember asking any questions, since I was shocked with the diagnosis.
  • california_artist
    california_artist Member Posts: 816 Member
    Rewriter said:

    lymph node removal and staging
    I remember reading--almost three years ago, and my memory ain't what it used to be--that lymph node removal in the diagnosis of UPSC helped determine staging, treatment, and follow-up monitoring. Prior to the use of lymphadenectomy, doctors did not really know with accuracy the correct stage of the disease. This is a big reason why statistics (lies, damn lies, etc.) prior to the 2005 adoption of the Yale treatment protocol, which included lymph node removal in determining accurate stage, were so grim; and what was called Stage 1a, for example, was NOT what we call Stage 1a now.


    Thus, with the accuracy in staging that comes with lymph node removal, women with USPC are given a great deal more hope, their treatment is more targeted, and the medical community has more information about who might recur and who might not. Also, some women are spared certain treatments that may be determined unnecessary.

    Nevertheless, Claudia, it seems that the entity that gains the greatest benefit from the practice of lymph node removal is the medical community, and not the women with the disease. I completely agree with you that it seems as if too many lymph nodes are being removed, thus impairing the body's ability to fight further infection. The important thing, I guess, is to keep asking our doctors HOW they are going to use the information and HOW the information will affect our treatment.

    I don't have the time right now to think this all through, so there may be lots of flaws in what I am saying. Claudia, I'm looking forward to having you point them out (seriously).

    Love,

    Jill

    Hi, Jill
    What I was noticing was that even if there was no sign of cancer in any nodes as in Fayards and other's cases, they were still given treatement as though it was a stage 3C.

    Has anyone here, who was staged with nodes removed and had it determined that their nodes were clear, and there was no sign of cancer anywhere else in the body, been told they could go home???? Or were they offered something just incase a cell got loose somewhere????

    would appreciate your input on this one.

    And in Fayard's case since the cancer was a Stage ll and clear cell, she was going to be offered chemo and radiation anyway. Clear cell responds to taxol better than UPSC from what I've read. It may have positive estrogen receptors. I honestly forget why is responded better.

    We really need a convention or a committee or something.
  • culka
    culka Member Posts: 149 Member

    Hi, Jill
    What I was noticing was that even if there was no sign of cancer in any nodes as in Fayards and other's cases, they were still given treatement as though it was a stage 3C.

    Has anyone here, who was staged with nodes removed and had it determined that their nodes were clear, and there was no sign of cancer anywhere else in the body, been told they could go home???? Or were they offered something just incase a cell got loose somewhere????

    would appreciate your input on this one.

    And in Fayard's case since the cancer was a Stage ll and clear cell, she was going to be offered chemo and radiation anyway. Clear cell responds to taxol better than UPSC from what I've read. It may have positive estrogen receptors. I honestly forget why is responded better.

    We really need a convention or a committee or something.

    I was like that
    12 negative nodes, clear uterus, only residue of tumor in cervix, so she sent me to radiology.
    Before surgery UPSC, clear cell and endometroid
    After surgery clear cell and endometroid
    After radiation endometroid

    Did I loose it on my way?
  • Fayard
    Fayard Member Posts: 438

    Hi, Jill
    What I was noticing was that even if there was no sign of cancer in any nodes as in Fayards and other's cases, they were still given treatement as though it was a stage 3C.

    Has anyone here, who was staged with nodes removed and had it determined that their nodes were clear, and there was no sign of cancer anywhere else in the body, been told they could go home???? Or were they offered something just incase a cell got loose somewhere????

    would appreciate your input on this one.

    And in Fayard's case since the cancer was a Stage ll and clear cell, she was going to be offered chemo and radiation anyway. Clear cell responds to taxol better than UPSC from what I've read. It may have positive estrogen receptors. I honestly forget why is responded better.

    We really need a convention or a committee or something.

    Difference
    I think the difference between Stage 2 and 3 treatments is radiation. Apparently, I do not need it because the lymph nodes were clean and the tumor confined to the uterus (even though it invaded the myometrium more that 50%, which is why it was stage 2.)
  • culka
    culka Member Posts: 149 Member
    Fayard said:

    Difference
    I think the difference between Stage 2 and 3 treatments is radiation. Apparently, I do not need it because the lymph nodes were clean and the tumor confined to the uterus (even though it invaded the myometrium more that 50%, which is why it was stage 2.)

    I guess
    the difference is doctor or cancer hospital. I was same stage 2 as you, babe.

    Thank God I was excused from chemo and till today can't understand why I signed the radiation paper.
  • nancygt
    nancygt Member Posts: 86
    JoAnnDK said:

    let's not forget.......
    ........that not only do men have this new prostate cancer drug, but they also have Viagra. Yet there is no "cure" for morning sickness (or neuropathy for that matter). GRRRR I realize that neither of these conditions are fatal, but neither is erectile dysfunction!

    Cynical about Male and Female Cancer testing/treatment
    It is not just treatment but you can go all the way back to testing, The PSA test has a much higher false positive rate than CA 125 and there have even been panels calling for deletion of PSA testing from coverage as majority of men with prostate cancer will not die of the cancer as it is slow growing. But don't hold your breath.
    And now that CA 125 can be combined with HER 4 testing, it is a much more reliable test. But I have a business associate with BCBS that tells me not to hold my breath on any recommendations re: CA 125 testing and that it not the cost of the test itself but the follow procedures-ultrasound, biopsy,etc- that are costly. Sounds a lot like the govt panel that wanted to change mammogram coverage to annual only at age 50, rather than age 40. It was easy to put a cost on the redcued number of mammograms that would be done and the 600,000 women a year that would be diagnosed much later were deemed to be expendable.It was really nice to hear that panle was made up of "public health" doctors and did not contain a single oncologist. Fortunately public uproar and the power of the bereat cancer lobby squashed that debacle.
    Sorry if I sound cynical but I have had a personal experience that was quite upsetting. When my second recurrence of USPC within 15 months of orginal diagnosis (and 4 months of end of treatment for first recurrence)called for aggressive chemo, I had my local doctor,and my docs at M.D.Anderson and Moffett Fla. agree that most efficacy would be to be treated with Cisplatin and Adriamycin. I had to wait 2 months to be treated due to severe chemotherapy drug shortages. I contacted my insurer, United Healthcare, largest insurance company in U.S. and neither they nor my doctors could not help obtain the drugs sooner. So my tumors near my lung increased from 8 to 20 and their growth rate doubled (SUV 8 to 16 on PET scan)while I waited on the drugs. I agree that we have not harnessed power to effect change-but when I posted about proposed legislation before congress to consider greater power for FDA when critical chemotherapy drugs were in dire shortage, I did not get a single response to the posting.Where is our energy to effect change ? Maybe some of our energy spent arguing about alternative treatments and all but attacking each other needs to be directed to getting PET scans approved for high grade uterine cancers for medicare (and insurers who follow medicare guidelines), whether CA 125 testing now more accurate when combined with HER 4 be recommended by gynecologists to patients over a certain age, whether the FDA can do anything to alleviate critical shortages of proven chemo drugs that have been around for 50 years or more rather than paying $100,000 for drugs of questionable value ?
    Yes I am cynical and I probably won't live to see any of these changes made but maybe these changes could help the next generation of those diagnosed or the ones that could be diagnosed earlier.