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Is it possible to have Ovarina Cancer with a "normal" CA125 result?
Hi. I am a 32 yr old with diagnosed PCOS for over 7 years now. I have been seeing the same GYN since my initial diagnosis and although I'm comfortable with him, I don't feel that my condition is truly getting the attention it should get. With multiple surgeries to remove cysts I now have lots of scar tissue and am no longer a good candidate for surgery per my GYN. I also had a post op sepsis infection (pseudomonas and staph) that lead to kidney failure and open abdominal surgery. My mother is a breast Cancer survivor having had her first lump at the age of 31. My Maternal grandfather has Prostate Cancer. In the last six months, I have developed another complex cyst (and some smaller simple cysts) that is now the size of a grapefruit with septations that appear to range from "thin" to "mid-thickness" according to what my GYN stated. I continue to have the following symptoms: Severe Ab Pain, Abnormal Bleeding (sometimes bleeding for 6-8 weeks at a time and saturating a sanitary pad at a rate of 1 every 45 min to an hour), Feeling full quickly/difficulty eating, I always have to Urinate but not a lot comes out, Ab. Bloating, Pain during intercourse, lower back pain, fatigue, and chronic Intestinal issues i.e diarrhea no matter my diet (I've seen a Gastro doc and had both upper and lower GI series done and no conclusion that I have IBS), yet my GYN brushes me off as having IBS. I insisted on a CA125 and the results came back "ok" according to the secretary. I don't know what the CA125 number was. Since then I have had one Ultrasound about every 3 weeks. The cyst has "...engulfed the Left Ovary completely" according to one Ultrasound report. I have gone to a second opinion but she is focusing on the bleeding only. I guess my question is the following: Considering my history, and my list of symptoms, how do I press on? Is it possible to have Ovarian Cancer with a "normal" CA 125 test result? Should I go to a third opinion? Thank you. - Scared of a Silent Killer
Please do yourself a favor & ask for copies of everything you have done...including your blood-work.
I am rather disappointed with Dr. Goodman's response to you in that there was no mention of the genetic mutation referred to as BRCA 1 and/or 2 nor did she emphasize the normal range for CA125 is 0-35 & although it is not a
RE: BRCA
Each year, more than 192,000 American women learn they have breast cancer. Approximately 5 to 10 percent of these women have a hereditary form of the disease. Changes, called alterations or mutations, in certain genes make some women more susceptible to developing breast and other types of cancer. Inherited alterations in the genes called BRCA1 and BRCA2 (short for breast cancer 1 and breast cancer 2) are involved in many cases of hereditary breast and ovarian cancer. Researchers are searching for other genes that may also increase a woman's cancer risk.
The likelihood that breast and/or ovarian cancer is associated with BRCA1 or BRCA2 is highest in families with a history of multiple cases of breast cancer, cases of both breast and ovarian cancer, one or more family members with two primary cancers (original tumors at different sites), or an Ashkenazi (Eastern European) Jewish background. However, not every woman in such families carries an alteration in BRCA1 or BRCA2, and not every cancer in such families is linked to alterations in these genes.
CA125
CA 125 is a protein that is a so-called tumor marker or biomarker, which is a substance that is found in greater concentration in tumor cells than in other cells of the body. In particular, CA 125 is present in greater concentration in ovarian cancer cells than in other cells. Its function is not currently understood. CA stands for cancer antigen.
CA 125 is usually measured from a blood sample. It can also be measured in fluid from the chest or abdominal cavity. The tests currently in use are all based upon the use of an antibody that is directed against the CA 125 protein (monoclonal antibody technique).
An improved version of the test was introduced and is sometimes denoted as CA 125 - II. The numerical figure of the second generation test results may be higher or lower than a first generation test. When comparing multiple test results over time, it can be important to know which method was used.
The normal values for CA 125 may vary slightly among individual laboratories. In most laboratories, the normal value is less than 35 U /ml.
It is not possible to interpret the meaning of an abnormally high CA 125 without additional information about the particular patient being evaluated. The reason is that this protein can be increased in many different benign and malignant conditions. The two most frequent situations in which CA 125 is used is to monitor patients with a known cancer (malignancy) or as one of several tests in the workup of a patient suspected of having a tumor.
The most common use of the test is the monitoring of women with known cancer of the ovary (ovarian cancer). In the patient who is known to have a malignancy, such as ovarian cancer, the CA 125 level can be monitored periodically. A decreasing level generally indicates that therapy, including chemotherapy, has been effective, while an increasing level indicates tumor recurrence. Because of test variation, small changes are usually not considered significant. A doubling or halving of the previous value would be important.
In the patient who is being evaluated for a pelvic mass, a CA 125 level greater than 65 is associated with malignancy in approximately 90% of cases. However, without a demonstrable mass, the association is much weaker.
A number of benign conditions can cause elevations of the CA 125 level, including pregnancy, endometriosis, uterine fibroids (benign tumors), pancreatitis, normal menstruation, pelvic inflammatory disease, and liver disease. Benign tumors of the ovaries can also cause an abnormal test result. Increases can also be seen in cancers other than ovarian cancer, including malignancies of the uterine tubes, endometrium, lung, breast, and gastrointestinal tract.
I have ovarian cancer, stage 3, my gyno kept insisting it was a dermoid cyst, & had I not insisted on a vertical cut for surgery they wouldn't have found that I had cancer in both ovaries. How about that for an oops? My oncologist/surgeon (after surgery) came in saying to me, "I'm glad we listened to you, you were right to vertically cut you because you had cancer in both ovaries".
I've been to many many support groups with women complaining about stomach problems...standard doctor's response "oh, it's Irriable Bowel Syndrone"....one poor lady had gone to a stomach specialist for over a yr. when her doctor's light finally went off & the patient was told "oh, maybe you need to see a gynocologist".
It so saddens me that there are so many women that wholeheartedly heed whatever their doctor says instead of doing their own homework. Doctors are only "body" mechanics...it's guest work. Yes, they are awesome when you find an awesome one, but unfortunately with the HMO problems, & Doctor reward systems, etc. you have got to be your own advocate. Do yourself a favor & do your own research. Come up with a list of questions for your doctor (after you've learned all that you need to learn). It is your body & your body alone; lastly, building a closer relationship with Jesus would be the priority with all that you're going through.
PS
I also have breast cancer & am BRCA1+ have had 2 sisters pass away of breast cancer, one at 30 & one at 51...I think it's my turn? God bless you & hope I was of some help.
I am rather disappointed with Dr. Goodman's response to you in that there was no mention of the genetic mutation referred to as BRCA 1 and/or 2 nor did she emphasize the normal range for CA125 is 0-35 & although it is not a
RE: BRCA
Each year, more than 192,000 American women learn they have breast cancer. Approximately 5 to 10 percent of these women have a hereditary form of the disease. Changes, called alterations or mutations, in certain genes make some women more susceptible to developing breast and other types of cancer. Inherited alterations in the genes called BRCA1 and BRCA2 (short for breast cancer 1 and breast cancer 2) are involved in many cases of hereditary breast and ovarian cancer. Researchers are searching for other genes that may also increase a woman's cancer risk.
The likelihood that breast and/or ovarian cancer is associated with BRCA1 or BRCA2 is highest in families with a history of multiple cases of breast cancer, cases of both breast and ovarian cancer, one or more family members with two primary cancers (original tumors at different sites), or an Ashkenazi (Eastern European) Jewish background. However, not every woman in such families carries an alteration in BRCA1 or BRCA2, and not every cancer in such families is linked to alterations in these genes.
CA125
CA 125 is a protein that is a so-called tumor marker or biomarker, which is a substance that is found in greater concentration in tumor cells than in other cells of the body. In particular, CA 125 is present in greater concentration in ovarian cancer cells than in other cells. Its function is not currently understood. CA stands for cancer antigen.
CA 125 is usually measured from a blood sample. It can also be measured in fluid from the chest or abdominal cavity. The tests currently in use are all based upon the use of an antibody that is directed against the CA 125 protein (monoclonal antibody technique).
An improved version of the test was introduced and is sometimes denoted as CA 125 - II. The numerical figure of the second generation test results may be higher or lower than a first generation test. When comparing multiple test results over time, it can be important to know which method was used.
The normal values for CA 125 may vary slightly among individual laboratories. In most laboratories, the normal value is less than 35 U /ml.
It is not possible to interpret the meaning of an abnormally high CA 125 without additional information about the particular patient being evaluated. The reason is that this protein can be increased in many different benign and malignant conditions. The two most frequent situations in which CA 125 is used is to monitor patients with a known cancer (malignancy) or as one of several tests in the workup of a patient suspected of having a tumor.
The most common use of the test is the monitoring of women with known cancer of the ovary (ovarian cancer). In the patient who is known to have a malignancy, such as ovarian cancer, the CA 125 level can be monitored periodically. A decreasing level generally indicates that therapy, including chemotherapy, has been effective, while an increasing level indicates tumor recurrence. Because of test variation, small changes are usually not considered significant. A doubling or halving of the previous value would be important.
In the patient who is being evaluated for a pelvic mass, a CA 125 level greater than 65 is associated with malignancy in approximately 90% of cases. However, without a demonstrable mass, the association is much weaker.
A number of benign conditions can cause elevations of the CA 125 level, including pregnancy, endometriosis, uterine fibroids (benign tumors), pancreatitis, normal menstruation, pelvic inflammatory disease, and liver disease. Benign tumors of the ovaries can also cause an abnormal test result. Increases can also be seen in cancers other than ovarian cancer, including malignancies of the uterine tubes, endometrium, lung, breast, and gastrointestinal tract.
I have ovarian cancer, stage 3, my gyno kept insisting it was a dermoid cyst, & had I not insisted on a vertical cut for surgery they wouldn't have found that I had cancer in both ovaries. How about that for an oops? My oncologist/surgeon (after surgery) came in saying to me, "I'm glad we listened to you, you were right to vertically cut you because you had cancer in both ovaries".
I've been to many many support groups with women complaining about stomach problems...standard doctor's response "oh, it's Irriable Bowel Syndrone"....one poor lady had gone to a stomach specialist for over a yr. when her doctor's light finally went off & the patient was told "oh, maybe you need to see a gynocologist".
It so saddens me that there are so many women that wholeheartedly heed whatever their doctor says instead of doing their own homework. Doctors are only "body" mechanics...it's guest work. Yes, they are awesome when you find an awesome one, but unfortunately with the HMO problems, & Doctor reward systems, etc. you have got to be your own advocate. Do yourself a favor & do your own research. Come up with a list of questions for your doctor (after you've learned all that you need to learn). It is your body & your body alone; lastly, building a closer relationship with Jesus would be the priority with all that you're going through.
PS
I also have breast cancer & am BRCA1+ have had 2 sisters pass away of breast cancer, one at 30 & one at 51...I think it's my turn? God bless you & hope I was of some help.
Thank you SEM and chopps for your wonderful feedback and advice... Since my last post I had one of my ovaries removed and the pathology came back with atypia. I am currently awaiting the "final" results to see what "atypia" it is and hoping for the results to be benign.... :)
Will keep you up to date and thank you again for all of your support!
Will keep you up to date and thank you again for all of your support!
Hi sem1956
You said you have stage 3 ovarinan cancer. What treatment are you doing and what did you do after surgery.
My last post was to sem1956. I said jojo but that was wrong. sem1956 please see last post that was addressed to jojo.
You said you have stage 3 ovarinan cancer. What treatment are you doing and what did you do after surgery.
My last post was to sem1956. I said jojo but that was wrong. sem1956 please see last post that was addressed to jojo.
Hi Jojo,
Thank you so much for your wonderfully written and educational post. You will help many women. I strongly feel as you do about being your own advocate.
My mother was diagnosed with stage IIIC primary peritoneal cancer last week and has surgery tomorrow, Thursday September 25th. They are debulking and removing basically everything including part of her intestine and bowel which have some cancer on the outside of it.
They plan for chemo. She is still deciding whether Interperitoneal Chemo is better or the regular chemo. They are doing a horizontal cut. This is the first time I've heard of the vertical cut.
Please, any advice info you can give me I would really appreciate. I have tried to do so much research and have never been in a chat room or forum. Your post was so intuitive and well written I'd appreciate your input.
She had symptoms for over a year an a half and was being aggressive. Tests did not show anything - CA 125, vaginal ultrasound and ct scan (2 years ago). She had clear symptoms of this disease: pain in abdomen, bad constipation and extended abdomen. The doctor kept sending her to the gastro... More doctors do need to know and understand these symtoms. She told them 1 year ago she thought she had cancer and insisted on tests. Unfortunately, it's tough to diagnose in early stages.
She is a vibrant alive woman.
Jojo, I will keep you in my thoughts and prayers. Hang in there and know there are those of us that care and appreciate you sharing your knowledge and experience.
Thank you so much for your wonderfully written and educational post. You will help many women. I strongly feel as you do about being your own advocate.
My mother was diagnosed with stage IIIC primary peritoneal cancer last week and has surgery tomorrow, Thursday September 25th. They are debulking and removing basically everything including part of her intestine and bowel which have some cancer on the outside of it.
They plan for chemo. She is still deciding whether Interperitoneal Chemo is better or the regular chemo. They are doing a horizontal cut. This is the first time I've heard of the vertical cut.
Please, any advice info you can give me I would really appreciate. I have tried to do so much research and have never been in a chat room or forum. Your post was so intuitive and well written I'd appreciate your input.
She had symptoms for over a year an a half and was being aggressive. Tests did not show anything - CA 125, vaginal ultrasound and ct scan (2 years ago). She had clear symptoms of this disease: pain in abdomen, bad constipation and extended abdomen. The doctor kept sending her to the gastro... More doctors do need to know and understand these symtoms. She told them 1 year ago she thought she had cancer and insisted on tests. Unfortunately, it's tough to diagnose in early stages.
She is a vibrant alive woman.
Jojo, I will keep you in my thoughts and prayers. Hang in there and know there are those of us that care and appreciate you sharing your knowledge and experience.
Thank you so much for your insight and response. I saw my Second GYN today and she mentioned the lupron shots but due to the size of the complex cyst and amount of septations and internal debris and coupled with the increasing amount of pain, it appears that I will undergo surgery to have it removed very soon.
Thank you again for the feedback and I look forward to providing you with a status!
Have a wonderful day!
Thank you again for the feedback and I look forward to providing you with a status!
Have a wonderful day!
MEDICAL PROFESSIONAL
Hi There,
it is not common for a 32 year old to develop ovarian cancer. It is not impossible, just very rare. Cysts are common and are usually benign. For you with your history, your cysts may be adhesions and fluid collections from your previous surgeries. One way to sort that out is to suppress the ovaries with lupron shots. This puts you into artificial menopause. If the cysts resolve, then they are related to active ovarin function. If they donot, then they may be related to adhesions.
Ask your doctor about the use of lupron to shrink the cysts.
CA 125 is a protein produced by tumor cells, fibroids, endometriosis, inflammation. It is not a screening test for ovarian cancer.
best wishes
it is not common for a 32 year old to develop ovarian cancer. It is not impossible, just very rare. Cysts are common and are usually benign. For you with your history, your cysts may be adhesions and fluid collections from your previous surgeries. One way to sort that out is to suppress the ovaries with lupron shots. This puts you into artificial menopause. If the cysts resolve, then they are related to active ovarin function. If they donot, then they may be related to adhesions.
Ask your doctor about the use of lupron to shrink the cysts.
CA 125 is a protein produced by tumor cells, fibroids, endometriosis, inflammation. It is not a screening test for ovarian cancer.
best wishes
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