Hi, on behalf of a worried friend – what are the major and minor symptoms of ovarian cancer?
Thanks in advance.
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Ovarian cancer often is difficult to diagnose because the symptoms are vague lower abdominal discomfort or back pain. Many people don’t even have symptoms! There are so many other causes for these symptoms that the best your friend can do is get a good pelvic exam by a competent, board-certified doctor. Ovarian cancer is relatively uncommon, so most people with these symptoms don’t have it. Even our sophisticated ultrasounds and blood tests (the ca-125 in particular), are very POOR tests for screening or detection of ovarian cancer even in patients we already know are at high risk because of family history. Late symptoms of ovarian cancer include progressive swelling of the abdomen with fluid (not gas!), but this is also seen in a variety of other diseases.H2
My Mother was diagnosed with stage III Ovarian Cancer last summer. She had a high CA 125 preceding surgery but the doctors still thought that it was unlikely that it was cancerous. It was not until surgery that she was diagosed. I know that these tests give a high rate of false positives but I would still encourage anyone who gets a results to take it very seriusly. After all, if it is not cancer, what is the harm in being careful and if it is–the earlier the better!
Also, I wonder if Jan or anybody else knows anything about the data on the birth control pill and the risks of Ovarian Cancer. Since my mom was diagnosed, I have looked into this and found that test results (sorry, I don’t have any of the references at the moment-I can’t seem to find them) really seem to show a lowering of risks after two -five years on the pill. I think that a lot of the tests are fairly preliminary but it may be in a family like Jan’s that this is something to look into. Anyhow, if anyone has info I would be interested.
I have just finished six sessions of chemo for ovarian cancer and am currently in remission.
I have a twin sister who died of ovarian cancer because it is so hard to detect (Level 3 when they found it). She died in 1986.
At my last visit to my OB/GYN I requested a CA125 test. I was having some female problems – frequent urination, some bloatedness (but, at 52 I thought it was more menopause than anything). The exam found a large tumor so we scheduled surgery. Ultrasound indicated the tumor was fluid.
More about the CA125. Surgery was scheduled – try to do it vaginally. The CA125 came back a 70. Anything over a 30/35 is suspect. Well, I had major surgery, the fluid tumor was benign, but I had seven areas that biopsied cancerous. (Level 2 ovarian cancer). I was treated with Taxol and Cystoplatinum chemos.
After my second chemo, my CA125 was 55. After my 4th chemo, it was 10. (pretty exciting – I’m now a 10). After my 5th and 6th chemo it was a 7.
I did have a CAT scan and laproscopic surgery as follow up and no cancer cells or tumors were found. Two months after my last chemo I had a followup CA125 and it was 12. We will use the CA125 only as a gauge. I have two other younger sisters and both of their doctors say the CA125 is hard to use to diagnose ovarian cancer, but is helpful for followup after cancer has been diagnosed. The doctors did not do the CA125 on my sisters. (Ages 42 and 34)
If there is any ovarian cancer in your family, talk to your doctor about this test. I actually requested the test before seeing the dr. – when the nurse was doing the workup. Thank goodness.
My last chemo was the end of May this year. I feel good, back to walking at least five days a week – and hopeful about the remission.
Yes, taking the birth control pill does significantly lower the risk of ovarian cancer. However, we do not know if this holds true in high-risk individuals to make it worthwhile. Getting back to Ca-125, it is not a good test for screening. Too many people will suffer worry and more importantly, complications of laparoscopy if every elevation is agressively pursued…H2
In article <3vudai$jc…@mhadg.production.compuserve.com>, Howard Homler <76212…@CompuServe.COM> wrote:
>Ovarian cancer often is difficult to diagnose because the >symptoms are vague lower abdominal discomfort or back pain. Many >people don’t even have symptoms! There are so many other causes >for these symptoms that the best your friend can do is get a >good pelvic exam by a competent, board-certified doctor. Ovarian >cancer is relatively uncommon,
Out of curiousity, does anyone know if polycystic ovarian disease is closely associated with ovarian cancer?
– —- Windows 95 and NT: IBM’s OS choices for IBM hardware, x86 and PowerPC —- "That’s not our primary target. There are people out there who love [OS/2 Warp] on the desktop, but our focus is on large enterprise customers." — chief executive officer Louis Gerstner (IBM) (July, 1995)
Not only does CA125 give false positive results leading to unnecessary laparoscopies, but even potentially more serious is the fact that there are also many false negatives. Mucinous tumors, for instance, are nearly always if not always negative. I know from personal experience.
Jan, My name is Beth Kupper-Herr. I, too, am an ovarian cancer survivor — I’m 44 yrs old, was first diagnosed 6-1/2 years ago, had 6 courses of chemo then, a recurrence 2-/1/2 yrs later followed by 6 more chemos, have been cancer-free (knock on wood) for 3 yrs. I’m glad to learn that you got through your treatment well, and am very sorry about your sister. The "female problems" you described are CLASSIC symptoms of ovarian cancer. Be on the lookout, in the future, for any PERSISTENT bloating, frequent urination, lower back pain, bowel problems. I found my recurrence thru a slight weight gain and very slight bloating (skirts were getting tight in the waist). As you probably know, even without ovaries, this disease can still recur.
[Running out of space -- continued in another message.]
This is Beth Kupper-Herr, with part 2 of my reply to Jan:
I strongly disagree with your doctors’ opinion on CA-125 for your sisters. With two first-degree relatives diagnosed with the disease, they have a strong family history and should be tested regularly (once-twice/year). There is a good deal of controversy in the medical community about CA-125 because it’s not a great test –but it’s the best there is now. A good marker should be both sensitive (quick to change in the presence of disease) and specific (only go up for one cause, e.g. ovarian cancer). Unfortunately, CA-125 is sensitive but not specific — it can be elevated not only for ovarian cancer but also for other things, such as pregnancy, infection, etc. In addition to the CA-125, your sisters should also get regular pelvic exams and transvaginal ultrasound. A good resource for you and them would be the Gilda Radner Familial Ovarian Cancer Registry (Dr. M. Steven Piver, Director), Roswell Park Cancer Institute, Elm & Carlton Sts., Buffalo, NY 14263 (716) 845-3110 or 1-800-OVARIAN.
If you are interested in more info on ovarian cancer or want to receive a newsletter for women fighting it, send me a reply and I’ll give you the address. Good health to you and your sisters!!
In <40khms$fn…@mhadf.production.compuserve.com> Stephen Herr
- Hide quoted text — Show quoted text -
<73073.3…@CompuServe.COM> writes:
>This is Beth Kupper-Herr, with part 2 of my reply to Jan:
>I strongly disagree with your doctors’ opinion on CA-125 for your >sisters. With two first-degree relatives diagnosed with the >disease, they have a strong family history and should be tested >regularly (once-twice/year). There is a good deal of controversy >in the medical community about CA-125 because it’s not a great >test –but it’s the best there is now. A good marker should be >both sensitive (quick to change in the presence of disease) and >specific (only go up for one cause, e.g. ovarian cancer). >Unfortunately, CA-125 is sensitive but not specific — it can be >elevated not only for ovarian cancer but also for other things, >such as pregnancy, infection, etc. In addition to the CA-125, >your sisters should also get regular pelvic exams and >transvaginal ultrasound.
Thanks for your message re the CA-125 test. I’ve been trying to find out more about this test because, although I don’t have any family members with ovarian cancer, I have many family members with breast cancer, and I know that often there is a connection. I was suprised to hear you say that the CA-125 test is so sensitive … my understanding was that it often didn’t give positive results until the cancer was fairly advanced. Is this not the case? Personally, I’d rather put up with a few false alarms so long as I knew it WOULD catch the cancer at an early stage if and when it occured!
> In <40khms$fn…@mhadf.production.compuserve.com> Stephen Herr > <73073.3…@CompuServe.COM> writes:
> >This is Beth Kupper-Herr, with part 2 of my reply to Jan:
> >I strongly disagree with your doctors’ opinion on CA-125 for your > >sisters. With two first-degree relatives diagnosed with the > >disease, they have a strong family history and should be tested > >regularly (once-twice/year). There is a good deal of controversy > >in the medical community about CA-125 because it’s not a great > >test –but it’s the best there is now. A good marker should be > >both sensitive (quick to change in the presence of disease) and > >specific (only go up for one cause, e.g. ovarian cancer). > >Unfortunately, CA-125 is sensitive but not specific — it can be > >elevated not only for ovarian cancer but also for other things, > >such as pregnancy, infection, etc. In addition to the CA-125, > >your sisters should also get regular pelvic exams and > >transvaginal ultrasound.
> Thanks for your message re the CA-125 test. I’ve been trying to find > out more about this test because, although I don’t have any family > members with ovarian cancer, I have many family members with breast > cancer, and I know that often there is a connection. I was suprised to > hear you say that the CA-125 test is so sensitive … my understanding > was that it often didn’t give positive results until the cancer was > fairly advanced. Is this not the case? Personally, I’d rather put up > with a few false alarms so long as I knew it WOULD catch the cancer at > an early stage if and when it occured!
> Elizabeth
The Ca-125 test is a very poor test to use to look for cancer. forget about the sensitivity and specificity the important parameters are the positive predictive value and the negative predictive value. These mean: if the test is positive what is the probability that the cancer is present, or if negative that there is no cancer. These values depend on the prevalence of cancer in the population being tested, Bayes theorem. The positve predictive value is less than 2% in a population such as you would be involved with. That means that for every 100 positive test only 2 would have cancer. What happens to the other 98 who have a positive test but no cancer>? Which are which? There are many reasons for an elevated Ca-125 that have nothing to do with cancer. Even in women with proven cancer half will have a negative test. Be very careful about Ca-125 being of any value. It is a good test if you already have cancer ,then it can be used to follow the course of treatment.
Ovarian cancer often is difficult to diagnose because the
symptoms are vague lower abdominal discomfort or back pain. Many
people don’t even have symptoms! There are so many other causes
for these symptoms that the best your friend can do is get a
good pelvic exam by a competent, board-certified doctor. Ovarian
cancer is relatively uncommon, so most people with these symptoms
don’t have it. Even our sophisticated ultrasounds and blood tests
(the ca-125 in particular), are very POOR tests for screening or
detection of ovarian cancer even in patients we already know are
at high risk because of family history. Late symptoms of ovarian
cancer include progressive swelling of the abdomen with fluid
(not gas!), but this is also seen in a variety of other
diseases.H2
–
H2
My Mother was diagnosed with stage III Ovarian Cancer last summer. She
had a high CA 125 preceding surgery but the doctors still thought that it
was unlikely that it was cancerous. It was not until surgery that she was
diagosed. I know that these tests give a high rate of false positives but
I would still encourage anyone who gets a results to take it very
seriusly. After all, if it is not cancer, what is the harm in being
careful and if it is–the earlier the better!
Also, I wonder if Jan or anybody else knows anything about the data on the
birth control pill and the risks of Ovarian Cancer. Since my mom was
diagnosed, I have looked into this and found that test results (sorry, I
don’t have any of the references at the moment-I can’t seem to find them)
really seem to show a lowering of risks after two -five years on the
pill. I think that a lot of the tests are fairly preliminary but it may
be in a family like Jan’s that this is something to look into. Anyhow, if
anyone has info I would be interested.
Alison
I have just finished six sessions of chemo for ovarian cancer and am
currently in remission.
I have a twin sister who died of ovarian cancer because it is so hard to
detect (Level 3 when they found it). She died in 1986.
At my last visit
to my OB/GYN I requested a CA125 test. I was
having some female problems – frequent urination, some bloatedness (but,
at 52 I thought it was more menopause than anything). The exam found a
large tumor so we scheduled surgery. Ultrasound indicated the tumor was
fluid.
More about the CA125. Surgery was scheduled – try to do it vaginally.
The CA125 came back a 70. Anything over a 30/35 is suspect. Well, I had
major surgery, the fluid tumor was benign, but I had seven areas that
biopsied cancerous. (Level 2 ovarian cancer). I was treated with Taxol
and Cystoplatinum chemos.
After my second chemo, my CA125 was 55. After my 4th chemo, it was 10.
(pretty exciting – I’m now a 10). After my 5th and 6th chemo it was a 7.
I did have a CAT scan and laproscopic surgery as follow up and no cancer
cells or tumors were found. Two months
after my last chemo I had a followup CA125 and it was 12. We will use
the CA125 only as a gauge. I have two other younger sisters and both of
their doctors say the CA125 is hard to use to diagnose ovarian cancer,
but is helpful for followup after cancer has been diagnosed. The doctors
did not do the CA125 on my sisters. (Ages 42 and 34)
If there is any ovarian cancer in your family, talk to your doctor about
this test. I actually requested the test before seeing the dr. – when
the nurse was doing the workup. Thank goodness.
My last chemo was the end of May this year. I feel good, back to walking
at least five days a week – and hopeful about the remission.
jan
Yes, taking the birth control pill does significantly lower the
risk of ovarian cancer. However, we do not know if this holds
true in high-risk individuals to make it worthwhile.
Getting back to Ca-125, it is not a good test for screening. Too
many people will suffer worry and more importantly, complications
of laparoscopy if every elevation is agressively pursued…H2
–
H2
In article <3vudai$jc…@mhadg.production.compuserve.com>,
Howard Homler <76212…@CompuServe.COM> wrote:
>Ovarian cancer often is difficult to diagnose because the
>symptoms are vague lower abdominal discomfort or back pain. Many
>people don’t even have symptoms! There are so many other causes
>for these symptoms that the best your friend can do is get a
>good pelvic exam by a competent, board-certified doctor. Ovarian
>cancer is relatively uncommon,
Out of curiousity, does anyone know if polycystic ovarian disease is
closely associated with ovarian cancer?
–
—- Windows 95 and NT: IBM’s OS choices for IBM hardware, x86 and PowerPC —-
"That’s not our primary target. There are people out there who love
[OS/2 Warp] on the desktop, but our focus is on large enterprise customers."
— chief executive officer Louis Gerstner (IBM) (July, 1995)
Not only does CA125 give false positive results leading to unnecessary
laparoscopies, but even potentially more serious is the fact that there
are also many false negatives. Mucinous tumors, for instance, are nearly
always if not always negative. I know from personal experience.
Jan,
My name is Beth Kupper-Herr. I, too, am an ovarian
cancer survivor — I’m 44 yrs old, was first diagnosed 6-1/2
years ago, had 6 courses of chemo then, a recurrence 2-/1/2 yrs
later followed by 6 more chemos, have been cancer-free (knock on
wood) for 3 yrs. I’m glad to learn that you got through your
treatment well, and am very sorry about your sister. The
"female problems" you described are CLASSIC symptoms of ovarian
cancer. Be on the lookout, in the future, for any
PERSISTENT bloating, frequent urination, lower back pain, bowel
problems. I found my recurrence thru a slight weight gain and
very slight bloating (skirts were getting tight in the waist).
As you probably know, even without ovaries, this disease can
still recur.
[Running out of space -- continued in another message.]
This is Beth Kupper-Herr, with part 2 of my reply to Jan:
I strongly disagree with your doctors’ opinion on CA-125 for your
sisters. With two first-degree relatives diagnosed with the
disease, they have a strong family history and should be tested
regularly (once-twice/year). There is a good deal of controversy
in the medical community about CA-125 because it’s not a great
test –but it’s the best there is now. A good marker should be
both sensitive (quick to change in the presence of disease) and
specific (only go up for one cause, e.g. ovarian cancer).
Unfortunately, CA-125 is sensitive but not specific — it can be
elevated not only for ovarian cancer but also for other things,
such as pregnancy, infection, etc. In addition to the CA-125,
your sisters should also get regular pelvic exams and
transvaginal ultrasound. A good resource for you and them would
be the Gilda Radner Familial Ovarian Cancer Registry (Dr. M.
Steven Piver, Director), Roswell Park Cancer Institute, Elm &
Carlton Sts., Buffalo, NY 14263 (716) 845-3110 or 1-800-OVARIAN.
If you are interested in more info on ovarian cancer or want to
receive a newsletter for women fighting it, send me a reply and
I’ll give you the address.
Good health to you and your sisters!!
In <40khms$fn…@mhadf.production.compuserve.com> Stephen Herr
- Hide quoted text — Show quoted text -
<73073.3…@CompuServe.COM> writes:
>This is Beth Kupper-Herr, with part 2 of my reply to Jan:
>I strongly disagree with your doctors’ opinion on CA-125 for your
>sisters. With two first-degree relatives diagnosed with the
>disease, they have a strong family history and should be tested
>regularly (once-twice/year). There is a good deal of controversy
>in the medical community about CA-125 because it’s not a great
>test –but it’s the best there is now. A good marker should be
>both sensitive (quick to change in the presence of disease) and
>specific (only go up for one cause, e.g. ovarian cancer).
>Unfortunately, CA-125 is sensitive but not specific — it can be
>elevated not only for ovarian cancer but also for other things,
>such as pregnancy, infection, etc. In addition to the CA-125,
>your sisters should also get regular pelvic exams and
>transvaginal ultrasound.
Thanks for your message re the CA-125 test. I’ve been trying to find
out more about this test because, although I don’t have any family
members with ovarian cancer, I have many family members with breast
cancer, and I know that often there is a connection. I was suprised to
hear you say that the CA-125 test is so sensitive … my understanding
was that it often didn’t give positive results until the cancer was
fairly advanced. Is this not the case? Personally, I’d rather put up
with a few false alarms so long as I knew it WOULD catch the cancer at
an early stage if and when it occured!
Elizabeth
eb…@ix.netcom.com (Elizabeth M. Baum ) wrote:
- Hide quoted text — Show quoted text -
> In <40khms$fn…@mhadf.production.compuserve.com> Stephen Herr
> <73073.3…@CompuServe.COM> writes:
> >This is Beth Kupper-Herr, with part 2 of my reply to Jan:
> >I strongly disagree with your doctors’ opinion on CA-125 for your
> >sisters. With two first-degree relatives diagnosed with the
> >disease, they have a strong family history and should be tested
> >regularly (once-twice/year). There is a good deal of controversy
> >in the medical community about CA-125 because it’s not a great
> >test –but it’s the best there is now. A good marker should be
> >both sensitive (quick to change in the presence of disease) and
> >specific (only go up for one cause, e.g. ovarian cancer).
> >Unfortunately, CA-125 is sensitive but not specific — it can be
> >elevated not only for ovarian cancer but also for other things,
> >such as pregnancy, infection, etc. In addition to the CA-125,
> >your sisters should also get regular pelvic exams and
> >transvaginal ultrasound.
> Thanks for your message re the CA-125 test. I’ve been trying to find
> out more about this test because, although I don’t have any family
> members with ovarian cancer, I have many family members with breast
> cancer, and I know that often there is a connection. I was suprised to
> hear you say that the CA-125 test is so sensitive … my understanding
> was that it often didn’t give positive results until the cancer was
> fairly advanced. Is this not the case? Personally, I’d rather put up
> with a few false alarms so long as I knew it WOULD catch the cancer at
> an early stage if and when it occured!
> Elizabeth
The Ca-125 test is a very poor test to use to look for cancer. forget
about the sensitivity and specificity the important parameters are
the positive predictive value and the negative predictive value.
These mean: if the test is positive what is the probability that the
cancer is present, or if negative that there is no cancer. These
values depend on the prevalence of cancer in the population being
tested, Bayes theorem. The positve predictive value is less than 2%
in a population such as you would be involved with. That means that
for every 100 positive test only 2 would have cancer. What happens
to the other 98 who have a positive test but no cancer>? Which
are which? There are many reasons for an elevated Ca-125 that
have nothing to do with cancer. Even in women with proven cancer
half will have a negative test. Be very careful about Ca-125 being
of any value. It is a good test if you already have cancer ,then it
can be used to follow the course of treatment.
Bill