Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Overall Survival Research

I have been doing some reading on Uterine CA and in particular, recurrences.

There does not seem to be much research available regarding radiation / chemotherapy vs no treatment. Does anyone have any suggestions where I can find information that would shoe comparisons of patients who did nothing vs patients who proceeded with radiation and/or chemotherapy?

I see some studies regarding external / internal radiation vs just external - and even those all seem to have no real difference in the overall survival rate.

I am not trying to suggest that it is pointless - I would just like to see some stats that indicate that survival rate is higher if I have treatment vs if I just enjoy what's left.

Thanks for listening

Jan

Comments

  • JoAnnDK
    JoAnnDK Member Posts: 275
    stats are old
    Jan, most of the stats for UPSC are so old and outdated, and little research has been done for this type of uterine cancer.

    As for uterine cancer in general....I do not know where you would find this info.

    Were you offered chemo after your initial diagnosis? Or does Canadian health care not recommend this?

    A friend of mine who lives in France just told me that anyone over 65 there cannot get chemo. Shocking. N

    JoAnn
  • LizGrrr
    LizGrrr Member Posts: 124
    Canadian study
    http://www.isrn.com/journals/obgyn/2011/146264/

    Here's a recent study from Canada. Sample sizes are small, but it seems to indicate that Stage IA recurrence with observation is 12.5%, and 0-7% with chemo or chemo/radiation

    Liz in Dallas
  • fanniemay
    fanniemay Member Posts: 53
    LizGrrr said:

    Canadian study
    http://www.isrn.com/journals/obgyn/2011/146264/

    Here's a recent study from Canada. Sample sizes are small, but it seems to indicate that Stage IA recurrence with observation is 12.5%, and 0-7% with chemo or chemo/radiation

    Liz in Dallas

    The first thing I asked my oncologist/surgeon who is one of the best in Wisconsin. He is a researcher and educator doing both laproscopic and robotic surgery. I asked him if there is research or evidence to support doing chemo/radiation for 1A papillary serous and he said "definitely" so I am taking his advice and doing 4 chemos followed by 3 internal radiations. From the few studies I have seen(including the one Liz posted)there is about a 10 to 20% better rate of survival for those who have the chemo/radiation treatments than those that don't do anything(just have the surgery) Tomorrow I go for my 2nd chemo. It is not an easy thing to go through, but worth it for me. I had bad bowel issues following chemo, along with muscle and bone weakness but that all went away about 2 weeks after.
  • RoseyR
    RoseyR Member Posts: 471
    JoAnnDK said:

    stats are old
    Jan, most of the stats for UPSC are so old and outdated, and little research has been done for this type of uterine cancer.

    As for uterine cancer in general....I do not know where you would find this info.

    Were you offered chemo after your initial diagnosis? Or does Canadian health care not recommend this?

    A friend of mine who lives in France just told me that anyone over 65 there cannot get chemo. Shocking. N

    JoAnn

    No chemo after age of sixty-five

    Agree that on the surface it seems shocking that France won't alow chemo after 65, but maybe it makes sense. OUr immune systems are known to gradually deteriorate with age and as chemo inflicts an assault on the immune system (needed to sustain the battle against cancer), it makes total sense to me to proscribe it after a certain age unless individual indicators suggest one's immune system is in great condition.

    Dr. Russell Blaylock, who has long treated brain cancer, wonder what the results would be if patients had just surgery followed by really good proactive diet and supplements that bolster the immune system. He conjectures that the results would be as good as those from chemo without the toxiicity. But of COURSE our National Cancer Associations would never fund such studies, antagonistic to the profits of Big Pharma.

    So we are left in the dark and here in the U.S. with one option: take their chemo with all its toxicity and dubious results or else. They still don't teach anything about nutrition or supplements in most US medical schools, which is why my own doctor left the U.S. to go study elsewhere. When Reagan had cancer he went right to Germany, not America. For good reason: methods are calcified and archaic here; "the book" hasn't changed in thirty years. Cut, burn, and poison. And serve, in the meantime, hospital food known to increase metastasis--white bread, jello, canned soup, junk.
  • I Will Survive
    I Will Survive Member Posts: 27
    fanniemay said:

    The first thing I asked my oncologist/surgeon who is one of the best in Wisconsin. He is a researcher and educator doing both laproscopic and robotic surgery. I asked him if there is research or evidence to support doing chemo/radiation for 1A papillary serous and he said "definitely" so I am taking his advice and doing 4 chemos followed by 3 internal radiations. From the few studies I have seen(including the one Liz posted)there is about a 10 to 20% better rate of survival for those who have the chemo/radiation treatments than those that don't do anything(just have the surgery) Tomorrow I go for my 2nd chemo. It is not an easy thing to go through, but worth it for me. I had bad bowel issues following chemo, along with muscle and bone weakness but that all went away about 2 weeks after.

    wondering
    Dr. Blaylock can wonder all he wants about not having/doing treatments, but he is not the one whose life is on the line.

    I, for one, refuse to believe in this "conspiracy" between doctors and big pharma. I have read too many thrillers in my day, both fiction and non-fiction, to believe that a conspiracy this vast could be formulated and not be detected with REAL evidence, not just supposition. I am not saying, however, that individual doctors or hospitals have not struck "deals" with pharmaceutical companies.

    I do think that research would proceed faster if we put all the researchers together, out in the desert with no outside contacts, and told them they had a year to find an answer!

    Re: France and chemo - next thing you will know, senilicide will be a sanctioned way of dealing with those over 65.

    Hannah
  • LizGrrr
    LizGrrr Member Posts: 124
    fanniemay said:

    The first thing I asked my oncologist/surgeon who is one of the best in Wisconsin. He is a researcher and educator doing both laproscopic and robotic surgery. I asked him if there is research or evidence to support doing chemo/radiation for 1A papillary serous and he said "definitely" so I am taking his advice and doing 4 chemos followed by 3 internal radiations. From the few studies I have seen(including the one Liz posted)there is about a 10 to 20% better rate of survival for those who have the chemo/radiation treatments than those that don't do anything(just have the surgery) Tomorrow I go for my 2nd chemo. It is not an easy thing to go through, but worth it for me. I had bad bowel issues following chemo, along with muscle and bone weakness but that all went away about 2 weeks after.

    Chemo aftereffects, etc
    One thing I've learned from these boards is that there is no 'set' treatment for UPSC Stage IA - many seem to be getting 6 chemos with sandwich radiation but my onc recommended just 3 chemos and I'll learn more about radiation recos in a couple of weeks.

    Hooray - yesterday I finished my 3rd and final chemo! I do get constipated so I'm religious about drinking 8-10 glasses of water a day and taking stool softeners morning and night, as well as eating a lot of protein and fiber. I also get horrid bone pain that lasts 7-10 days and alas the onc won't prescribe anything stronger than hydrocodone which doesn't really work and gives me insomnia.

    So for this last go-'round we're trying skipping the Neulasta shot and doing some extra bloodwork to monitor my WBC. So far I feel super!

    Liz in Dallas
  • Rewriter
    Rewriter Member Posts: 493
    LizGrrr said:

    Chemo aftereffects, etc
    One thing I've learned from these boards is that there is no 'set' treatment for UPSC Stage IA - many seem to be getting 6 chemos with sandwich radiation but my onc recommended just 3 chemos and I'll learn more about radiation recos in a couple of weeks.

    Hooray - yesterday I finished my 3rd and final chemo! I do get constipated so I'm religious about drinking 8-10 glasses of water a day and taking stool softeners morning and night, as well as eating a lot of protein and fiber. I also get horrid bone pain that lasts 7-10 days and alas the onc won't prescribe anything stronger than hydrocodone which doesn't really work and gives me insomnia.

    So for this last go-'round we're trying skipping the Neulasta shot and doing some extra bloodwork to monitor my WBC. So far I feel super!

    Liz in Dallas

    Congratulations, Liz!
    on completing your treatment. I, too, had Stage 1a UPSC and in November '08 completed my treatment of six rounds of carbo/taxol followed by five vaginal brachytherapy sessions. I've been NED ever since.

    I, too, had bowel problems during treatment and found that one tablespoon of unsweetened psyllium twice a day helped tremendously. You might consider also adding a good probiotic tablet to your diet; I use PB-8 (available at Trader Joe's and Whole Foods).

    The bone pain gets better... I hope that each day you feel better.

    Jill
  • imackie48
    imackie48 Member Posts: 96
    LizGrrr said:

    Chemo aftereffects, etc
    One thing I've learned from these boards is that there is no 'set' treatment for UPSC Stage IA - many seem to be getting 6 chemos with sandwich radiation but my onc recommended just 3 chemos and I'll learn more about radiation recos in a couple of weeks.

    Hooray - yesterday I finished my 3rd and final chemo! I do get constipated so I'm religious about drinking 8-10 glasses of water a day and taking stool softeners morning and night, as well as eating a lot of protein and fiber. I also get horrid bone pain that lasts 7-10 days and alas the onc won't prescribe anything stronger than hydrocodone which doesn't really work and gives me insomnia.

    So for this last go-'round we're trying skipping the Neulasta shot and doing some extra bloodwork to monitor my WBC. So far I feel super!

    Liz in Dallas

    New
    Liz, did you have any side effects from Neulasta, since I was taking Leukine, with so many side effects, it did bring my white count up .
    Irene
  • daisy366
    daisy366 Member Posts: 1,458
    imackie48 said:

    New
    Liz, did you have any side effects from Neulasta, since I was taking Leukine, with so many side effects, it did bring my white count up .
    Irene

    Some doctors think outside the box
    There is understandably set protocols. My observation from being on this board for 3 years is that most docs seem to recommend both chemo and radiation no matter what the stage.

    My doc did not recommend abdominal and pelvic radiation for me staged at 3a UPSC. So far I think this was a wise recommendation for me. In the end we all make our decisions and then live with them. These are hard decisions.

    Rosey mentioned being stuck with "their chemo". I wonder how many doctors would decide against chemo if it was themselves or their loved ones involved??
  • cheerful
    cheerful Member Posts: 261
    LizGrrr said:

    Chemo aftereffects, etc
    One thing I've learned from these boards is that there is no 'set' treatment for UPSC Stage IA - many seem to be getting 6 chemos with sandwich radiation but my onc recommended just 3 chemos and I'll learn more about radiation recos in a couple of weeks.

    Hooray - yesterday I finished my 3rd and final chemo! I do get constipated so I'm religious about drinking 8-10 glasses of water a day and taking stool softeners morning and night, as well as eating a lot of protein and fiber. I also get horrid bone pain that lasts 7-10 days and alas the onc won't prescribe anything stronger than hydrocodone which doesn't really work and gives me insomnia.

    So for this last go-'round we're trying skipping the Neulasta shot and doing some extra bloodwork to monitor my WBC. So far I feel super!

    Liz in Dallas

    Hi Liz:

    I too, was diagnosed with Stage 1 UPSC (mine was a large polyp) in February of 2011 and I also completed chemo treatments (6) of them at the end of August 2011. I also had 3 radiation treatments and completed them in mid October. I made out fairly well with chemo although I did have to have a blood transfusion and a Neulasta shot in August and I did feel a lot better after I received that particular treatment and it really helped me. My white blood cell count was low as well as my platelets. It took a little while for everything to get better. By November everything was pretty much back to normal for me. Although your immune system can be down for a long time so just be sure to stay away from hospitals or around a lot of people.

    My radiologist mentioned to me last summer that I have an 80 to 90% chance of survival which I feel is very good.

    I do hope that you feel better and again Congratulations on completing your chemo treatments.

    I live in Delaware County, PA and you can contact me via e-mail under Cheerful on this board. I joined the UPSC cancer group in April of last year.

    Cheerful
  • Pat51
    Pat51 Member Posts: 130
    fanniemay said:

    The first thing I asked my oncologist/surgeon who is one of the best in Wisconsin. He is a researcher and educator doing both laproscopic and robotic surgery. I asked him if there is research or evidence to support doing chemo/radiation for 1A papillary serous and he said "definitely" so I am taking his advice and doing 4 chemos followed by 3 internal radiations. From the few studies I have seen(including the one Liz posted)there is about a 10 to 20% better rate of survival for those who have the chemo/radiation treatments than those that don't do anything(just have the surgery) Tomorrow I go for my 2nd chemo. It is not an easy thing to go through, but worth it for me. I had bad bowel issues following chemo, along with muscle and bone weakness but that all went away about 2 weeks after.

    Dr. in Wisconsin
    Fanniemay,

    May I ask what doctor you see in Wisconsin? I have UPSC, I live in Wisconsin and I am looking for someone who knows a little more about UPSC. The oncologist that I go to has not seen many cases of UPSC. Good luck with your treatments.

    Pat
  • JoAnnDK
    JoAnnDK Member Posts: 275
    Pat51 said:

    Dr. in Wisconsin
    Fanniemay,

    May I ask what doctor you see in Wisconsin? I have UPSC, I live in Wisconsin and I am looking for someone who knows a little more about UPSC. The oncologist that I go to has not seen many cases of UPSC. Good luck with your treatments.

    Pat

    numbers
    My doctor at Hopkins, which has a highly regarded gyn onc department (they have 3 pathologists who only deal with gyn cancer) said they have only 7 patients there with UPSC. (But the regular oncology dept. has hundreds with breast cancer). So a few cases of UPSC may be all that any doctors see. My local/secondary gyn onc only has 4 cases.

    I have a cousin who is a retired tumor/cancer registrar in Boston. I just e-mailed her to see if she can find out how many cases were reported last year. Just out of curiosity.

    JoAnn
  • LizGrrr
    LizGrrr Member Posts: 124
    imackie48 said:

    New
    Liz, did you have any side effects from Neulasta, since I was taking Leukine, with so many side effects, it did bring my white count up .
    Irene

    Neulasta
    I had excruciating leg pain after my first two chemos, so this last time around the onc said we'd skip the Neulasta and so far I've had 36 hours of pain-free legs and less neuropathy! Hoping this continues :)

    Liz in Dallas
  • LizGrrr
    LizGrrr Member Posts: 124
    JoAnnDK said:

    numbers
    My doctor at Hopkins, which has a highly regarded gyn onc department (they have 3 pathologists who only deal with gyn cancer) said they have only 7 patients there with UPSC. (But the regular oncology dept. has hundreds with breast cancer). So a few cases of UPSC may be all that any doctors see. My local/secondary gyn onc only has 4 cases.

    I have a cousin who is a retired tumor/cancer registrar in Boston. I just e-mailed her to see if she can find out how many cases were reported last year. Just out of curiosity.

    JoAnn

    UPSC sightings
    When I received my diagnosis from my gyno in October 2011, she said this is only the 2nd UPSC case she's seen in 20 years of interning and practicing.

    I'm so special :)

    Liz in Dallas
  • daisy366
    daisy366 Member Posts: 1,458
    LizGrrr said:

    UPSC sightings
    When I received my diagnosis from my gyno in October 2011, she said this is only the 2nd UPSC case she's seen in 20 years of interning and practicing.

    I'm so special :)

    Liz in Dallas

    Special all right!!
    Liz, special for sure. This is a heck of a group to be in!! My doctor's practice is only gyn-onc and 3 years ago I was told that for the 3 docs there, they have about 12 patients at any given time with UPSC.

    I'm feeling pretty special too. Mary Ann
  • Gloria C
    Gloria C Member Posts: 23
    LizGrrr said:

    UPSC sightings
    When I received my diagnosis from my gyno in October 2011, she said this is only the 2nd UPSC case she's seen in 20 years of interning and practicing.

    I'm so special :)

    Liz in Dallas

    "special"
    Yes, I am "special" as well.....only I am Stage 4A....and its in the lymphnodes (I was 48 when diagnosed and am now 52). Chemo left me with severe bone pain and neuropathy....I decided AGAINST full body radiation which was the recommended protocal. Well, here I am....still alive over 2 yrs later.....figured I would take my chances with the cancer killing me rather than the radiation. For me, it's paid off. But, since I have NO markers, who knows about the gamble. However, I do know the radiation would have killed off my organs and ,so far, all organs are functioning properly. Chemo and its after effects are he##, but still better than pushing daisies. Who knows what our 'new normal' will be. My oncologists are amazed that Im still alive and offer no hope. Proved them wrong so far (they gave me 3 mos).
  • daisy366
    daisy366 Member Posts: 1,458
    Gloria C said:

    "special"
    Yes, I am "special" as well.....only I am Stage 4A....and its in the lymphnodes (I was 48 when diagnosed and am now 52). Chemo left me with severe bone pain and neuropathy....I decided AGAINST full body radiation which was the recommended protocal. Well, here I am....still alive over 2 yrs later.....figured I would take my chances with the cancer killing me rather than the radiation. For me, it's paid off. But, since I have NO markers, who knows about the gamble. However, I do know the radiation would have killed off my organs and ,so far, all organs are functioning properly. Chemo and its after effects are he##, but still better than pushing daisies. Who knows what our 'new normal' will be. My oncologists are amazed that Im still alive and offer no hope. Proved them wrong so far (they gave me 3 mos).

    Go Gloria!!
    My brother in law with stomach cancer was given 3 months 18 years ago. He has good quality of life even with no stomach. He has even run the Marine Corps Marathon, enjoyed the marriage of his daughter, and plays with multiple grandchildren.

    You are not done yet, Gloria. I will continue to live on and prosper with you.

    Another UPSC sister, Mary Ann
  • RoseyR
    RoseyR Member Posts: 471

    wondering
    Dr. Blaylock can wonder all he wants about not having/doing treatments, but he is not the one whose life is on the line.

    I, for one, refuse to believe in this "conspiracy" between doctors and big pharma. I have read too many thrillers in my day, both fiction and non-fiction, to believe that a conspiracy this vast could be formulated and not be detected with REAL evidence, not just supposition. I am not saying, however, that individual doctors or hospitals have not struck "deals" with pharmaceutical companies.

    I do think that research would proceed faster if we put all the researchers together, out in the desert with no outside contacts, and told them they had a year to find an answer!

    Re: France and chemo - next thing you will know, senilicide will be a sanctioned way of dealing with those over 65.

    Hannah

    Not conspiracy, but myopia

    To suggest that chemo and radiation are limited ways to address cancer isn't to suggest a "conspiracy" between doctors and Big Pharma; I myself opted for chemo and radiation.

    It is merely to suggest the stranglehold that tradition can impose upon any profession.
    By its very nature medicine is a necessarily conservative discipline, resistant to change. In some ways that protects us from spurious treatments, untested prescriptions--although researchers such as Ralph Moss claim that many chemotherapeutic agents such as Avastin were never adequately tested before being sanctioned, just as hormone therapy was never adequately tested before being presribed for menopausal complaints.

    It is moreoever to suggest what should be obvious: that traditional disciplines governed by political structures such as the AMA tend to keep promulgating the same therapies, the same orthodoxies, decade after decade, so that even new med students at the "best" U.S. schools rarely, if ever, receive training in additioal ways to enhance treatment, mitigate side effects of chemo, or bolster the immune system, helping us to withstand the effects of traditional treatment.

    So to question American oncologists' resistance to change, their insistence on hundreds of randomized studies to prove the benefit of a supplement but more casual standards for testing new pharmaceuticals, and, most indictingly, their shocking lack of knowledge about basic nutrition, is not to claim a conspiracy; it is merely to show the limitations of medical orthodoxy.

    The bottom line: When a prominent oncologist has never heard that low levels of Vitamin B-12 before one starts chemo predisposes one to suffer worse neuropathy ("I don't remember hearing that in med school," one of my oncs sighed), he or she betrays, at best, a lack of intellectual curiosity, refusal to think outside the box, and a degree of laziness that would be indicted in any other profession.

    How many of our oncologists HAD our Vitamin B-12 levels checked before we started chemo?

    How many of your oncologists tested our ferritin levels AFTER treatment to be sure our iron levels weren't too high? How many of us who had transfusions were warned beforehand that more than one might cause a high ferritin level that can pose a threat to cancer patients?

    How many, in short, have shown even the most primitive knowledge of how our prior vitamin
    and mineral status could affect our treatment?

    And how many hospitals where we had our hysterectomies CONTINUE to serve canned soup, jello, custard, and other sugar-laden "foods" as we recuperate from surgery and stock their snack areas with canned soda? All of them.

    A conspiracy with Pepsi? No. But a lazy tradition that typifies not merely the trays of alleged food we find on their plates, but a limited approach to many facets of our treatment.
  • soromer
    soromer Member Posts: 130
    RoseyR said:

    Not conspiracy, but myopia

    To suggest that chemo and radiation are limited ways to address cancer isn't to suggest a "conspiracy" between doctors and Big Pharma; I myself opted for chemo and radiation.

    It is merely to suggest the stranglehold that tradition can impose upon any profession.
    By its very nature medicine is a necessarily conservative discipline, resistant to change. In some ways that protects us from spurious treatments, untested prescriptions--although researchers such as Ralph Moss claim that many chemotherapeutic agents such as Avastin were never adequately tested before being sanctioned, just as hormone therapy was never adequately tested before being presribed for menopausal complaints.

    It is moreoever to suggest what should be obvious: that traditional disciplines governed by political structures such as the AMA tend to keep promulgating the same therapies, the same orthodoxies, decade after decade, so that even new med students at the "best" U.S. schools rarely, if ever, receive training in additioal ways to enhance treatment, mitigate side effects of chemo, or bolster the immune system, helping us to withstand the effects of traditional treatment.

    So to question American oncologists' resistance to change, their insistence on hundreds of randomized studies to prove the benefit of a supplement but more casual standards for testing new pharmaceuticals, and, most indictingly, their shocking lack of knowledge about basic nutrition, is not to claim a conspiracy; it is merely to show the limitations of medical orthodoxy.

    The bottom line: When a prominent oncologist has never heard that low levels of Vitamin B-12 before one starts chemo predisposes one to suffer worse neuropathy ("I don't remember hearing that in med school," one of my oncs sighed), he or she betrays, at best, a lack of intellectual curiosity, refusal to think outside the box, and a degree of laziness that would be indicted in any other profession.

    How many of our oncologists HAD our Vitamin B-12 levels checked before we started chemo?

    How many of your oncologists tested our ferritin levels AFTER treatment to be sure our iron levels weren't too high? How many of us who had transfusions were warned beforehand that more than one might cause a high ferritin level that can pose a threat to cancer patients?

    How many, in short, have shown even the most primitive knowledge of how our prior vitamin
    and mineral status could affect our treatment?

    And how many hospitals where we had our hysterectomies CONTINUE to serve canned soup, jello, custard, and other sugar-laden "foods" as we recuperate from surgery and stock their snack areas with canned soda? All of them.

    A conspiracy with Pepsi? No. But a lazy tradition that typifies not merely the trays of alleged food we find on their plates, but a limited approach to many facets of our treatment.

    Great comment, Rosey!
    I agree with your thoughtful analysis 100%.
    I so wish it weren't an accurate assessment of the general degree of myopia within the oncology specialties, at least in terms of what I have encountered (through direct patient care and via peer-reviewed journal articles).
  • Rewriter
    Rewriter Member Posts: 493
    soromer said:

    Great comment, Rosey!
    I agree with your thoughtful analysis 100%.
    I so wish it weren't an accurate assessment of the general degree of myopia within the oncology specialties, at least in terms of what I have encountered (through direct patient care and via peer-reviewed journal articles).

    Brilliant
    Rosey...just brilliant.