UPSC: applicable findings from ovarian cancer research
Since UPSC is far rarer than ovarian cancer, comparatively, there is not enough research or active clinical work that seems to focus on UPSC, while in the ovarian cancer community, a lot of activities are taking place such as large scale clinical trials and well published research findings. Most of these, I believe, are applicable to UPSC. My gyn oncologist's sub specialty happens to be ovarian cancer. So, armed with all the latest stuff in the ovarian side, he put me on a protocol based on latest research findings and clinical study results. Since I thought going in this was also ovarian cancer, and because I spent a few weeks of intense research on ovarian cancer myself, I was familiar with what he was talking about: in fact, if he did not offer this treatment modality, I would have pressed him for it.
Based on what little I saw on this board, I am a bit surprised that there seems to be little discussion and awareness of all the development on the ovarian cancer side, though a lot of it should be applicable to UPSC. I have the feeling that the "label" (uterine) is creating a perceptual block: having it categorized as uterine cancer is creating a mental block for patients AND THEIR DOCTORS ALIKE so that useful findings from ovarian cancer side are not easily ported to managing UPSC.
I would like to make a recommendation to the UPSC sisters here that perhaps they should educate themselves more about what is being done at the ovarian cancer community and discuss this with their doctors and make sure that they doctors are not putting a blinder on, subconsciously, of course - after all, doctors are people too, they are NOT infallible.
If I got this entirely wrong (as in, you and your doctors are all aware of the latest happenings in the ovarian side), I apologize for being presumptuous.
Comments
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optimist
I appreciate this information and your recommendation to connect with the ovarian board which I intend to do. However, since you have the benefit of spending time there, can you give some more information in this regard - what specifically are you referring to, etc? Are there any particular threads we would benefit most from? Do you think we should scrap this site or add the other and stay connected here too?
I do think my doc is well informed about UPSC but maybe I am missing something. He did mention avastin as a strategy we would pursue if needed for recurrence. Is this the type of thing you are referring to?
Mary Ann0 -
THE WARRIORS ON THE UTERINE BOARD
are exceptionally well educated and aware of the complexity of all gynecologic cancers. We struggle with this complexity everyday.
The GOG: Gynecologic Oncology Group has several current clinical trials for uterine cancers. GOG-0249, 0258, 0250.
In addition to bevacizumab, ifosfamide, cisplatin, gemcitabine and temsirolimus are also highly active in the treatment of uterine cancers.
I am confident that the many brilliant, dedicated gynecologic oncologists in the United States are aware of the current research.
I wish all Warriors the very best.
Starfish0 -
My doctor is very aware that UPSC is like ovarian cancer
My doctor is a gyn/ono at a Moffitt Cancer Center. He told me many times that UPSC acts like ovarian, but insurance companies will not approve the same drugs/ tests for UPSC that are used for ovarian. He said he get frustrated because he would like to use drugs that are approved for ovarian cancer, but his hands are tied due to not being able to get insurance approval for those drugs.
I think because you had ovarian in your diagnosis you are able to get your drug protocol. I do hope that it works for you, and you do well with the chemo. In peace and caring.0 -
Mary Ann, Yes, the kind ofdaisy366 said:optimist
I appreciate this information and your recommendation to connect with the ovarian board which I intend to do. However, since you have the benefit of spending time there, can you give some more information in this regard - what specifically are you referring to, etc? Are there any particular threads we would benefit most from? Do you think we should scrap this site or add the other and stay connected here too?
I do think my doc is well informed about UPSC but maybe I am missing something. He did mention avastin as a strategy we would pursue if needed for recurrence. Is this the type of thing you are referring to?
Mary Ann
Mary Ann,
Yes, the kind of things you are mentioning are what I was referring to. As I mentioned in my earlier post, uterine cancers are divided into type I and type II: type I is much more common. UPSC is part of type II type. Type II has poorer prognosis. Among type II, UPSC really behaves like ovarian cancer.
What struck me when I started to read many posts on this board was that there was hardly any discussion on the newest dose dense regimen that is getting a lot of attention in the ovarian community (well, that's because it was primarily an ovarian cancer clinical trial, no surprise here). One of the preeminent gyn oncologists was quoted with something like "this is the most exciting finding in all fields of gyn oncology field from last year - the most significant breaththrough in recent history" For something that significant, which should be applicable to UPSC, not to get a significant mind share on this board was a bit of a surprise to me. Again, it could be that there were a lot of discussions among the UPSC patients here but I did not do enough "archeological digging" to notice. But I got enough responses from other members sharing their puzzlement at why I am on a non-standard protocol, so I must assume that this is not a widely shared knowledge. Among members of the ovarian board in another site, the dose dense protocol is a common knowledge.
There are simply more ovarian cancer research than UPSC and unfortunately very few UPSC specific research (I am not including generic uterine cancer research here for a reason that should be obvious by now from my perspective). For instance, there were research findings that discussed the effectiveness of second line chemo based on rising CA125 alone vs. waiting for the real symptoms to show up, etc. The list goes on. Hence, my sentiment that UPSC patients and their doctors should stay on top of the ovarian research much more vigilantly.
Another poster provided the list of clinical trials for uterine cancer. I checked a few of them. They are uterine cancer (more generic) trials. They did NOT specify UPSC per se. It is my understanding that in all likelihood, unless there is a specific focus on UPSC, most uterine cancer research is likely to involve mostly type I cancer, and as such the findings may not be as applicable to UPSC. AND, based on everything I read, from a patient's perspective, UPSC is much more like ovarian cancer than type I uterine cancer.
There was no doubt in my mind and obviously in the mind of my doctor that I should be on the dose dense regimen based on the outcome of the Japanese study. Both of us were coming to UPSC via ovarian route, and this was the first thing that entered into our minds. I am simply pointing out the fact that there is such a thing as a perceptual mental block because of the name and categorization, and we as patients should be our foremost advocate, in case our doctor suffers from such a block. Nobody said doctors are infallible.
Again, I mean no disrespect for members on this board and their doctors. I am sure most of the UPSC members on this board and our doctors are on top of things.....0 -
My gyn- onc is head of
My gyn- onc is head of gyn-onc dept at a university med ctr which is one of the nih designated comprehensive cancer centers and he is well aware of treating my upsc cancer with ovarian ca protocols but must deal with issues of limitations of ins approvals based on diagnosis code. And like others here I routinely follow ovca board as well as keep up with research in that area. It is unfortunate that our treatments are based on a bureaucratic coding system which I fear will only get worse as regulation increases to control healthcare costs. We all want access to the best available treatments but there are many gatekeepers limiting this. Another issue I have is that tax dollars are also invested into research yet govt controlled payer systems limite who can benefit. A very complex issue, no easy answers, and we must each take a proactive stance in our treatments.
Btw, my differential diagnosis post-surgery was upsc 4b vs ovarian 3c. They are essentially the same disease based on cell histology, differing only in where they seem to get there start.0 -
yes... mine was the sameupsofloating said:My gyn- onc is head of
My gyn- onc is head of gyn-onc dept at a university med ctr which is one of the nih designated comprehensive cancer centers and he is well aware of treating my upsc cancer with ovarian ca protocols but must deal with issues of limitations of ins approvals based on diagnosis code. And like others here I routinely follow ovca board as well as keep up with research in that area. It is unfortunate that our treatments are based on a bureaucratic coding system which I fear will only get worse as regulation increases to control healthcare costs. We all want access to the best available treatments but there are many gatekeepers limiting this. Another issue I have is that tax dollars are also invested into research yet govt controlled payer systems limite who can benefit. A very complex issue, no easy answers, and we must each take a proactive stance in our treatments.
Btw, my differential diagnosis post-surgery was upsc 4b vs ovarian 3c. They are essentially the same disease based on cell histology, differing only in where they seem to get there start.
yes... mine was the same case: upsc 4b (my doctor) vs. ovarian 3c (hospital pathologist). The second opinion (from a Mt Sinai pathologist) concurs with my doctor's. But in my case, it seems like I am benefiting from this ambiguity. I think my doc is turning this difference in opinion to my advantage.
the staging of 4B is quite scary: nobody wants to believe that they got the most advanced stage cancer. However, as I am doing more research, I am learning that unless it's really an early stage, for both upsc and ovarian cancer with cell grade 3 (most aggressive type), the real factor for good prognosis is how chemo sensitive your disease is, rather than whether it's stage 2, 3, or even 4. If you are a "responder" (that is, chemo is very effective), your odds are very good even if you are at an advanced stage. If you are not, stage 2 can turn into something much more serious very soon. But then again, they can explore whether other types of chemo cocktail works. Cell death assay analysis can help in this process to pin point the best combination of chemo that may work miracles for a specific patient. I understand that 20% of the patients who don't respond to the standard treatment can benefit greatly from a different combo. In case I recur, and in case I get resistant to front line chemo, this will be the option for me down the road if necessary.
I have a very good friend a gyn in Manhattan who works with doctors in Mt Sinai extensively, and she also gave me a long lecture when I got a very advanced staging. She also mentioned that as scary as it may sound, it's the ultra aggressive cancer (mine was: from clean check up in April to stage 4B in early december last year) that responds best to chemo.
Lo and behold. I think she is right. My debulking surgery was not optimal AT ALL. They left clusters of cancer nodules around the bowels. I used to have all sorts of odd abdominal sensations, especially around the colon area, even after the debulking surgery - I attributed them to cancer. Within a few days of the first chemo, I sensed these sensations were abating. It's been a little over 3 weeks from my first chemo, and these sensations altogether disappeared. Does not mean that cancer nodules are all gone, but the cancer clusters must have shrunken quite a bit for me not to have any sensation. I already knew chemo was working. So, I was not surprised when the CA125 came down significantly after the first round of 3 weeks of chemo was completed.
I have a good feeling that I will reach remission after the first line chemo. What I am already doing a lot research on is, how to prevent recurrence and if it does happen, how I can monitor it as actively as possible to catch it early. I understand that upsc 4b or ovarian 3c is not a "curable" disease - and that's OK - I will live with this as a chronic disease. there are much worse chronic diseases that completely wrack havoc with daily life unrelentingly. Hey, in between recurrences, you can travel, hike, go to the weddings, and celebrate birthdays!!! I believe cancer, even the recurring variety, is far kinder to normal life than many other medical conditions.... If your life expectancy is shortened a bit - well how is it different from people who do all sorts of things to shorten their life expectancies - like letting themselves become obese, smoking, drinking and not exercising at all....0 -
There's a SEARCH mechanism on this Discussion Board.evertheoptimist said:yes... mine was the same
yes... mine was the same case: upsc 4b (my doctor) vs. ovarian 3c (hospital pathologist). The second opinion (from a Mt Sinai pathologist) concurs with my doctor's. But in my case, it seems like I am benefiting from this ambiguity. I think my doc is turning this difference in opinion to my advantage.
the staging of 4B is quite scary: nobody wants to believe that they got the most advanced stage cancer. However, as I am doing more research, I am learning that unless it's really an early stage, for both upsc and ovarian cancer with cell grade 3 (most aggressive type), the real factor for good prognosis is how chemo sensitive your disease is, rather than whether it's stage 2, 3, or even 4. If you are a "responder" (that is, chemo is very effective), your odds are very good even if you are at an advanced stage. If you are not, stage 2 can turn into something much more serious very soon. But then again, they can explore whether other types of chemo cocktail works. Cell death assay analysis can help in this process to pin point the best combination of chemo that may work miracles for a specific patient. I understand that 20% of the patients who don't respond to the standard treatment can benefit greatly from a different combo. In case I recur, and in case I get resistant to front line chemo, this will be the option for me down the road if necessary.
I have a very good friend a gyn in Manhattan who works with doctors in Mt Sinai extensively, and she also gave me a long lecture when I got a very advanced staging. She also mentioned that as scary as it may sound, it's the ultra aggressive cancer (mine was: from clean check up in April to stage 4B in early december last year) that responds best to chemo.
Lo and behold. I think she is right. My debulking surgery was not optimal AT ALL. They left clusters of cancer nodules around the bowels. I used to have all sorts of odd abdominal sensations, especially around the colon area, even after the debulking surgery - I attributed them to cancer. Within a few days of the first chemo, I sensed these sensations were abating. It's been a little over 3 weeks from my first chemo, and these sensations altogether disappeared. Does not mean that cancer nodules are all gone, but the cancer clusters must have shrunken quite a bit for me not to have any sensation. I already knew chemo was working. So, I was not surprised when the CA125 came down significantly after the first round of 3 weeks of chemo was completed.
I have a good feeling that I will reach remission after the first line chemo. What I am already doing a lot research on is, how to prevent recurrence and if it does happen, how I can monitor it as actively as possible to catch it early. I understand that upsc 4b or ovarian 3c is not a "curable" disease - and that's OK - I will live with this as a chronic disease. there are much worse chronic diseases that completely wrack havoc with daily life unrelentingly. Hey, in between recurrences, you can travel, hike, go to the weddings, and celebrate birthdays!!! I believe cancer, even the recurring variety, is far kinder to normal life than many other medical conditions.... If your life expectancy is shortened a bit - well how is it different from people who do all sorts of things to shorten their life expectancies - like letting themselves become obese, smoking, drinking and not exercising at all....
I think if you put in the word "RESEARCH" in the SEARCH box on this discussion board, and also on the OVARIAN Discussion Board of this same website, you'll see hundreds of posts of new research posted by women with UPSC on BOTH boards. We have tried very hard to make this Discussion Board be the 'go to' place for anyone with UPSC, for support and for the latest research results. Several of the women that have posted here are getting the weekly dense dose chemo as their initial protocol, just as that new strategy is slowly being implemented by some of those newer posters on the Ovarian cancer Board.
I registered myself as an oncologist (bad girl; I know!) on OncologyStat over a year ago, and feel I'm actually able to understand most of what I read now after so much focused personal research. I try hard to post anything I think might be relevant to anyone here or on the Ovarian Board of this website.
(((Hugs))). You remind me of myself, eager to know EVERYTHING so that I can make the most informed decisions. Don't change!0 -
Education on USPC
Like Linda, I have done a lot of research on USPC and don't hesitate to plow through some of the more technical websites -in addition to National cancer Institute,ACS and others, I have found excellent articles on the SOG Society of Oncological Gynocology. I cannot join or print but I want to share an article that is their "State of the Union" for USPC authored by Dr. David Boruta atMass General and others(see link at bottom). It is recent (2009), gives history and overview and is an an interesting group to me as they advocate for having USPC split out from EEC(Endometrial)as so far only uterine carcinosarcoma has been.They also bemoan the lack of prospective(many have been retrospective review of data) trials for USPC-we are nothing like EEC yet are not offered many Ovarian trials.As the ACS and other articles say, we are only 10% of EC cases but USPC counts for nearly 40% of the deaths.And that number may be "understated" because recent studies hypothesize that even 10% papiallry serous cells make the cancer behave like USPC yet the mandate for histology is 50% or more USPC before it is classified. Also hidden into the lumped statistics is the fact that the incidence of USPC is growing.
At some point, I am thinking about an article and perhaps a discussion here on how we are the redheaded stepchild of gynological cancer. While the new ACS statistic reflect how scary Ovarian is (projected 22M cases and projected 14M deaths), the improving scenario in breast and prostate (20% death to new case ratio), EEC (uterus corpus as it is called shows 43M new cases and 8M deaths. At 10% of cases, that makes us just over 4M cases but 3200 deaths (40%). And split survival rates tell the same tale for stages 2,34 the rates are 80,60,30% for EEC but 50,20,5-10 for USPC. And yet while many drugs are approved for ovarian, they are likely to be "off label" for us which gives certain insurers an opportunity to deny. Did you know that under medicare, they include PET scans for Ovarian yet we have to pursue an exception. I go on medicare 7-1 (have to because two years disability and my current insurer mandates it that they become secondary)So I will have to pursue an exception thru the National Oncologic PET Registry in a few months and hope that works out.
I must admit I feel a certain sense of militancy that these gyrations are required for such a serious cancer and may start some postings along those lines here (I mostly read and learn on the Ovarian board here and I also visit Inspire-another one you may want to check out is the National Ovarian Cancer Coalition as their postings are quite interesting.
The link for the SOG article follows:
www.sgo.org/.../AA0E178A-8533-4BCE-A64D-54000F01A21B.pdf0 -
nancy, excellent post. As anancygt said:Education on USPC
Like Linda, I have done a lot of research on USPC and don't hesitate to plow through some of the more technical websites -in addition to National cancer Institute,ACS and others, I have found excellent articles on the SOG Society of Oncological Gynocology. I cannot join or print but I want to share an article that is their "State of the Union" for USPC authored by Dr. David Boruta atMass General and others(see link at bottom). It is recent (2009), gives history and overview and is an an interesting group to me as they advocate for having USPC split out from EEC(Endometrial)as so far only uterine carcinosarcoma has been.They also bemoan the lack of prospective(many have been retrospective review of data) trials for USPC-we are nothing like EEC yet are not offered many Ovarian trials.As the ACS and other articles say, we are only 10% of EC cases but USPC counts for nearly 40% of the deaths.And that number may be "understated" because recent studies hypothesize that even 10% papiallry serous cells make the cancer behave like USPC yet the mandate for histology is 50% or more USPC before it is classified. Also hidden into the lumped statistics is the fact that the incidence of USPC is growing.
At some point, I am thinking about an article and perhaps a discussion here on how we are the redheaded stepchild of gynological cancer. While the new ACS statistic reflect how scary Ovarian is (projected 22M cases and projected 14M deaths), the improving scenario in breast and prostate (20% death to new case ratio), EEC (uterus corpus as it is called shows 43M new cases and 8M deaths. At 10% of cases, that makes us just over 4M cases but 3200 deaths (40%). And split survival rates tell the same tale for stages 2,34 the rates are 80,60,30% for EEC but 50,20,5-10 for USPC. And yet while many drugs are approved for ovarian, they are likely to be "off label" for us which gives certain insurers an opportunity to deny. Did you know that under medicare, they include PET scans for Ovarian yet we have to pursue an exception. I go on medicare 7-1 (have to because two years disability and my current insurer mandates it that they become secondary)So I will have to pursue an exception thru the National Oncologic PET Registry in a few months and hope that works out.
I must admit I feel a certain sense of militancy that these gyrations are required for such a serious cancer and may start some postings along those lines here (I mostly read and learn on the Ovarian board here and I also visit Inspire-another one you may want to check out is the National Ovarian Cancer Coalition as their postings are quite interesting.
The link for the SOG article follows:
www.sgo.org/.../AA0E178A-8533-4BCE-A64D-54000F01A21B.pdf
nancy,
excellent post. As a statistician, I wonder how much of the difference in survival statistics between the garden variety uterine cancer and UPSC is due to the nature of the disease itself and how much of that is attributable to the fact that not all the treatment options are approved, available or administered to the UPSC patients.
For instance, ovarian cancer stage 4 survival rate is currently at 18% - in between usual uterine cancer and UPSC. Though I am not a medical expert, I have the sense that if we control for the lack of access to the latest and most effective ovarian cancer treatment regimen and options for UPSC patient due to the labeling and categorization, and probably the lack of awareness and expertise on the part of some of the doctors, the actual survival statistics for UPSC and ovarian cancer are about the same. UPSC is a very rare kind of cancer, and I think it's possible that some oncologists in very sparsely populated areas may have never seen this condition. Don't forget the fact that gyn oncologists are special breed to begin with and in small communities, some women may be treated by generic oncologists. I heard enough stories of gynecologists who have completely disregarded the patients' symptoms of ovarian cancer (attributing to weight gain, menopausal symptoms, etc) and thus failed to referred them to oncologists in time while the disease was at an early stage. AND, comparatively speaking, ovarian cancer is far more prevalent than UPSC. So, it won't surprise me if some oncologist with less experience are not completely on top of this disease.
My doctor (whose sub specialty is ovarian, and who I greatly trust in terms of expertise and insight) is of the same opinion (survival stats). He said, regardless of which one of the diagnostics (his diagnosis of UPSC 4B or the hospital pathologist's ovarian 3c)is correct or not, his assessment for my prognosis and treatment modality are about the same.
What it boils down to is, UPSC patients need to be far stronger advocates for themselves. Those who suspect that their doctors are not 100% on top of this rare disease may want to seek second and third opinion. You can send all of your medical paperwork to major research centers and get the second opinion that way. In my case, through my friend, who is a gynecologist in Manhattan, I was connected with doctors in Mt Sinai. I sent all the slides, surgery report, pathology reports, treatment plan etc and got consultation over the phone. Turns out, they all agreed with my doctor's approach. Though nothing changed, it was good to have the peace of mind of knowing this.0 -
Question for Everevertheoptimist said:nancy, excellent post. As a
nancy,
excellent post. As a statistician, I wonder how much of the difference in survival statistics between the garden variety uterine cancer and UPSC is due to the nature of the disease itself and how much of that is attributable to the fact that not all the treatment options are approved, available or administered to the UPSC patients.
For instance, ovarian cancer stage 4 survival rate is currently at 18% - in between usual uterine cancer and UPSC. Though I am not a medical expert, I have the sense that if we control for the lack of access to the latest and most effective ovarian cancer treatment regimen and options for UPSC patient due to the labeling and categorization, and probably the lack of awareness and expertise on the part of some of the doctors, the actual survival statistics for UPSC and ovarian cancer are about the same. UPSC is a very rare kind of cancer, and I think it's possible that some oncologists in very sparsely populated areas may have never seen this condition. Don't forget the fact that gyn oncologists are special breed to begin with and in small communities, some women may be treated by generic oncologists. I heard enough stories of gynecologists who have completely disregarded the patients' symptoms of ovarian cancer (attributing to weight gain, menopausal symptoms, etc) and thus failed to referred them to oncologists in time while the disease was at an early stage. AND, comparatively speaking, ovarian cancer is far more prevalent than UPSC. So, it won't surprise me if some oncologist with less experience are not completely on top of this disease.
My doctor (whose sub specialty is ovarian, and who I greatly trust in terms of expertise and insight) is of the same opinion (survival stats). He said, regardless of which one of the diagnostics (his diagnosis of UPSC 4B or the hospital pathologist's ovarian 3c)is correct or not, his assessment for my prognosis and treatment modality are about the same.
What it boils down to is, UPSC patients need to be far stronger advocates for themselves. Those who suspect that their doctors are not 100% on top of this rare disease may want to seek second and third opinion. You can send all of your medical paperwork to major research centers and get the second opinion that way. In my case, through my friend, who is a gynecologist in Manhattan, I was connected with doctors in Mt Sinai. I sent all the slides, surgery report, pathology reports, treatment plan etc and got consultation over the phone. Turns out, they all agreed with my doctor's approach. Though nothing changed, it was good to have the peace of mind of knowing this.
Hi,
Where are you being treated? My gyne-onc is at Mt. Sinai.
Thanks for sharing such good information. I think many of us here are dedicated researchers and often go as far as Linda did (posing as an oncologist--you GO, Linda) to access the latest data.
Best of luck on your cancer journey.
Jill0 -
I am being treated in NJ. IRewriter said:Question for Ever
Hi,
Where are you being treated? My gyne-onc is at Mt. Sinai.
Thanks for sharing such good information. I think many of us here are dedicated researchers and often go as far as Linda did (posing as an oncologist--you GO, Linda) to access the latest data.
Best of luck on your cancer journey.
Jill
I am being treated in NJ. I did not want to commute to NYC for the treatment unless there is a reason to believe that I am not getting the best care I could near where I live.
I am very satisfied with my care.
good luck.
(are you seeing Dr. RamaXXX, forget his spelling. Soundsedlike an Indian name. He provided second opinion. I only talked to him over the phone).0 -
One thing I must stress: I
One thing I must stress: I am sure that you all know, but anyway.........
The whole statistical number issue: remember that the survival rates are calculated based on the longitudinal observation. As such, you can safely guess that in all likelihood the actual odds of those of us who are posting here (unless you are a long term survivor, in which case you already beat the odds!) are better, perhaps even much better, given the development of new protocol, new treatment modalities, and new drugs, etc. The stats you see are based on women whose initial diagnosis was done, say, close to 10 years ago if not more, when understanding of UPSC and treatment options ten years ago were much more limited than they are now.
Lately, I read about some incredibly interesting development in handling gyn cancers. They will take somre years before they can be deployed for actual treatment. So, even if they say that UPSC late stage cancer cannot be "cured" or that the recurrence rate is high, we don't need to take that at a face value. You don't need to be "permanently cured". You need to survive each recurrence until the medical science develops and catches up. We all have actually much more time to "work with" this disease than what the stark stats tell you now.
Furthermore, those of us who are posting here, researching the options, and possessing emotional, financial, intellectual, and other logistical resources to be active advocates for our own treatment and care are already on the right side of the statistical curve (meaning, way above the mean/median survival odds). Remember that the over all stats include those who started the journey in very overall health, much older than we, lacking resources, spirit, and YES, a biggie, access to the best experts (directly or through cyber research).
When I got the diagnosis, the first thing I did was the google search on survival stats. They all came out really depressing. However, it took all 5 minutes to come to the conclusion that these stats don't apply to me. I reached this conclusion rationally, not out of delusion. I like to believe that I am a rational, logical person. I believe that rationally grounded optimism coupled with proactive approach and self advocacy create a virtuous cycle, and in the end allows us to beat the "published" odds by wide margin. After all, there are enough research findings that actually demonstrate that the attitude of a patient is a huge variable.
When I broke the news to my kids (age 19 and 17), I told them all about this and said "this is why your mom is not going anywhere any time soon". These are very bright kids. They will do their own research. When they do that, they will completely freak out seeing the dismal numbers. I needed to proactively debrief them on this - rationally, scientifically, and based on facts.0 -
Thank you so muchevertheoptimist said:One thing I must stress: I
One thing I must stress: I am sure that you all know, but anyway.........
The whole statistical number issue: remember that the survival rates are calculated based on the longitudinal observation. As such, you can safely guess that in all likelihood the actual odds of those of us who are posting here (unless you are a long term survivor, in which case you already beat the odds!) are better, perhaps even much better, given the development of new protocol, new treatment modalities, and new drugs, etc. The stats you see are based on women whose initial diagnosis was done, say, close to 10 years ago if not more, when understanding of UPSC and treatment options ten years ago were much more limited than they are now.
Lately, I read about some incredibly interesting development in handling gyn cancers. They will take somre years before they can be deployed for actual treatment. So, even if they say that UPSC late stage cancer cannot be "cured" or that the recurrence rate is high, we don't need to take that at a face value. You don't need to be "permanently cured". You need to survive each recurrence until the medical science develops and catches up. We all have actually much more time to "work with" this disease than what the stark stats tell you now.
Furthermore, those of us who are posting here, researching the options, and possessing emotional, financial, intellectual, and other logistical resources to be active advocates for our own treatment and care are already on the right side of the statistical curve (meaning, way above the mean/median survival odds). Remember that the over all stats include those who started the journey in very overall health, much older than we, lacking resources, spirit, and YES, a biggie, access to the best experts (directly or through cyber research).
When I got the diagnosis, the first thing I did was the google search on survival stats. They all came out really depressing. However, it took all 5 minutes to come to the conclusion that these stats don't apply to me. I reached this conclusion rationally, not out of delusion. I like to believe that I am a rational, logical person. I believe that rationally grounded optimism coupled with proactive approach and self advocacy create a virtuous cycle, and in the end allows us to beat the "published" odds by wide margin. After all, there are enough research findings that actually demonstrate that the attitude of a patient is a huge variable.
When I broke the news to my kids (age 19 and 17), I told them all about this and said "this is why your mom is not going anywhere any time soon". These are very bright kids. They will do their own research. When they do that, they will completely freak out seeing the dismal numbers. I needed to proactively debrief them on this - rationally, scientifically, and based on facts.
I want to tell you all that I think we are a totally awesome group of women. I am privileged to know you and so far I have personally met 2 of our upsc sisters. I feel like a special bond and sisterhood exists with us and I am VERY impressed with the eloquence, passion, determination, and intelligence we have. Go girls. Nice to have researchers, statisticians, medical and mental health professionals, nutritional experts, and yes, even an oncologist among our ranks!!!!
You have echoed many sentiments that I have/had. The reality of the unfairness to us about the medical tests denied our particular cancer. The importance for us to work with the gyn-onc medical specialists and for us to be fearless advocates. If we need to go political, I'm on board!!
Continuing blessings to us all. Mary Ann0 -
carbo/taxol- different treatment regimensparis11 said:THE WARRIORS ON THE UTERINE BOARD
are exceptionally well educated and aware of the complexity of all gynecologic cancers. We struggle with this complexity everyday.
The GOG: Gynecologic Oncology Group has several current clinical trials for uterine cancers. GOG-0249, 0258, 0250.
In addition to bevacizumab, ifosfamide, cisplatin, gemcitabine and temsirolimus are also highly active in the treatment of uterine cancers.
I am confident that the many brilliant, dedicated gynecologic oncologists in the United States are aware of the current research.
I wish all Warriors the very best.
Starfish
Hi,
I am new to this board, having just been diagnosed a few weeks ago with Stage 1b papillary serous uterine cancer. My oncologist is recommending 6 rounds of carbo/taxol chemo followed by 5 weeks of brachytherapy. He wants to administer the taxol weekly and the carboplatin every three weeks.
The Dr. I saw for a second opinion in NY indicated that weekly administration of taxol has only been approved thus far for ovarian cancer treatment, not uterine. She indicated that the only studies relating to the effectiveness of weekly taxol vs. every three weeks are some Japanese studies that were done with ovarian cancer patients. My oncologist says that women who have taxol weekly vs every three weeks tolerate it better. Has anyone here had experiences with either regimen that they can share with me? I am trying to make a decision.
Thank you,
Jane0 -
carbo/taxol- different treatment regimensparis11 said:THE WARRIORS ON THE UTERINE BOARD
are exceptionally well educated and aware of the complexity of all gynecologic cancers. We struggle with this complexity everyday.
The GOG: Gynecologic Oncology Group has several current clinical trials for uterine cancers. GOG-0249, 0258, 0250.
In addition to bevacizumab, ifosfamide, cisplatin, gemcitabine and temsirolimus are also highly active in the treatment of uterine cancers.
I am confident that the many brilliant, dedicated gynecologic oncologists in the United States are aware of the current research.
I wish all Warriors the very best.
Starfish
Hi,
I am new to this board, having just been diagnosed a few weeks ago with Stage 1b papillary serous uterine cancer. My oncologist is recommending 6 rounds of carbo/taxol chemo followed by 5 weeks of brachytherapy. He wants to administer the taxol weekly and the carboplatin every three weeks.
The Dr. I saw for a second opinion in NY indicated that weekly administration of taxol has only been approved thus far for ovarian cancer treatment, not uterine. She indicated that the only studies relating to the effectiveness of weekly taxol vs. every three weeks are some Japanese studies that were done with ovarian cancer patients. My oncologist says that women who have taxol weekly vs every three weeks tolerate it better. Has anyone here had experiences with either regimen that they can share with me? I am trying to make a decision.
Thank you,
Jane0 -
carbo/taxol- different treatment regimensparis11 said:THE WARRIORS ON THE UTERINE BOARD
are exceptionally well educated and aware of the complexity of all gynecologic cancers. We struggle with this complexity everyday.
The GOG: Gynecologic Oncology Group has several current clinical trials for uterine cancers. GOG-0249, 0258, 0250.
In addition to bevacizumab, ifosfamide, cisplatin, gemcitabine and temsirolimus are also highly active in the treatment of uterine cancers.
I am confident that the many brilliant, dedicated gynecologic oncologists in the United States are aware of the current research.
I wish all Warriors the very best.
Starfish
Hi,
I am new to this board, having just been diagnosed a few weeks ago with Stage 1b papillary serous uterine cancer. My oncologist is recommending 6 rounds of carbo/taxol chemo followed by 5 weeks of brachytherapy. He wants to administer the taxol weekly and the carboplatin every three weeks.
The Dr. I saw for a second opinion in NY indicated that weekly administration of taxol has only been approved thus far for ovarian cancer treatment, not uterine. She indicated that the only studies relating to the effectiveness of weekly taxol vs. every three weeks are some Japanese studies that were done with ovarian cancer patients. My oncologist says that women who have taxol weekly vs every three weeks tolerate it better. Has anyone here had experiences with either regimen that they can share with me? I am trying to make a decision.
Thank you,
Jane0 -
carbo/taxol- different treatment regimensparis11 said:THE WARRIORS ON THE UTERINE BOARD
are exceptionally well educated and aware of the complexity of all gynecologic cancers. We struggle with this complexity everyday.
The GOG: Gynecologic Oncology Group has several current clinical trials for uterine cancers. GOG-0249, 0258, 0250.
In addition to bevacizumab, ifosfamide, cisplatin, gemcitabine and temsirolimus are also highly active in the treatment of uterine cancers.
I am confident that the many brilliant, dedicated gynecologic oncologists in the United States are aware of the current research.
I wish all Warriors the very best.
Starfish
Hi,
I am new to this board, having just been diagnosed a few weeks ago with Stage 1b papillary serous uterine cancer. My oncologist is recommending 6 rounds of carbo/taxol chemo followed by 5 weeks of brachytherapy. He wants to administer the taxol weekly and the carboplatin every three weeks.
The Dr. I saw for a second opinion in NY indicated that weekly administration of taxol has only been approved thus far for ovarian cancer treatment, not uterine. She indicated that the only studies relating to the effectiveness of weekly taxol vs. every three weeks are some Japanese studies that were done with ovarian cancer patients. My oncologist says that women who have taxol weekly vs every three weeks tolerate it better. Has anyone here had experiences with either regimen that they can share with me? I am trying to make a decision.
Thank you,
Jane0 -
carbo/taxol- different treatment regimensparis11 said:THE WARRIORS ON THE UTERINE BOARD
are exceptionally well educated and aware of the complexity of all gynecologic cancers. We struggle with this complexity everyday.
The GOG: Gynecologic Oncology Group has several current clinical trials for uterine cancers. GOG-0249, 0258, 0250.
In addition to bevacizumab, ifosfamide, cisplatin, gemcitabine and temsirolimus are also highly active in the treatment of uterine cancers.
I am confident that the many brilliant, dedicated gynecologic oncologists in the United States are aware of the current research.
I wish all Warriors the very best.
Starfish
Hi,
I am new to this board, having just been diagnosed a few weeks ago with Stage 1b papillary serous uterine cancer. My oncologist is recommending 6 rounds of carbo/taxol chemo followed by 5 weeks of brachytherapy. He wants to administer the taxol weekly and the carboplatin every three weeks.
The Dr. I saw for a second opinion in NY indicated that weekly administration of taxol has only been approved thus far for ovarian cancer treatment, not uterine. She indicated that the only studies relating to the effectiveness of weekly taxol vs. every three weeks are some Japanese studies that were done with ovarian cancer patients. My oncologist says that women who have taxol weekly vs every three weeks tolerate it better. Has anyone here had experiences with either regimen that they can share with me? I am trying to make a decision.
Thank you,
Jane0 -
Hi Jane,Whippet said:carbo/taxol- different treatment regimens
Hi,
I am new to this board, having just been diagnosed a few weeks ago with Stage 1b papillary serous uterine cancer. My oncologist is recommending 6 rounds of carbo/taxol chemo followed by 5 weeks of brachytherapy. He wants to administer the taxol weekly and the carboplatin every three weeks.
The Dr. I saw for a second opinion in NY indicated that weekly administration of taxol has only been approved thus far for ovarian cancer treatment, not uterine. She indicated that the only studies relating to the effectiveness of weekly taxol vs. every three weeks are some Japanese studies that were done with ovarian cancer patients. My oncologist says that women who have taxol weekly vs every three weeks tolerate it better. Has anyone here had experiences with either regimen that they can share with me? I am trying to make a decision.
Thank you,
Jane
I have had both protocols (carbo/taxol weekly for 18 weeks vs. every three weeks). I much prefer weekly treatment. It is easier on the body. Also, you will receive more chemo (dose dense) and the chemo will be more active and therefore more effective as cancer cells divide. My physician is active in GOG and clinical trials.
Treatment decisions are extremely difficult.
Best of luck,
Starfish0 -
JaneWhippet said:carbo/taxol- different treatment regimens
Hi,
I am new to this board, having just been diagnosed a few weeks ago with Stage 1b papillary serous uterine cancer. My oncologist is recommending 6 rounds of carbo/taxol chemo followed by 5 weeks of brachytherapy. He wants to administer the taxol weekly and the carboplatin every three weeks.
The Dr. I saw for a second opinion in NY indicated that weekly administration of taxol has only been approved thus far for ovarian cancer treatment, not uterine. She indicated that the only studies relating to the effectiveness of weekly taxol vs. every three weeks are some Japanese studies that were done with ovarian cancer patients. My oncologist says that women who have taxol weekly vs every three weeks tolerate it better. Has anyone here had experiences with either regimen that they can share with me? I am trying to make a decision.
Thank you,
Jane
I am on a dose dense
Jane
I am on a dose dense regimen (carbo every three weeks, taxol every week - this is the protocol your doctor is recommending). I am also on Avastin - the anti agneogenesis drug. Dose dense regimen has been demonstrated to be extremely effective in the Japanese study. The difference in progression free survival during the 36 month observation period was 11 months!!! This is extremely significant. I bet if the observation period was much longer, the difference would have been even starker. This study was very well conducted with a large sample size, and hailed as a major breakthrough (one specialist's statement: the best clinical study results in 10 years). It's not just "some Japanese study" (sounds very dismissive, isn't it? the doctor who said is not following the field very closely, it appears).
Given that UPSC is just like Ovarian cancer, NOT the type I uterine cancer, most of the research findings done for ovarian cancer should apply to UPSC, while studies and research done for the generic uterine cancer (type I) are not very helpful in managing UPSC.
Your doctor is being proactive by suggesting the dose dense regimen, and I think you would be wiser to follow his suggestion.0
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