Ask the Expert
Members of the Johns Hopkins Ovarian Cancer Center team periodically will answer general questions on a variety of ovarian cancer topics, some of which are listed below. Questions will be solicited on a monthly basis -- check back here to learn when the next Ask the Expert Forum will be open. Answers to select questions will be posted at the end of the forum and archived on this page.
**Please do not submit questions asking for medical advice concerning specific medical care or treatment. Responses to questions posted on this website are not to be used as medical advice or construed as a second opinion.
The Ask the Expert Forum is now open for general questions. Submit your question to firstname.lastname@example.org. We will post answers periodically and inform you when they are posted.
I have a BRCA1 mutation. What are the current recommendations to assist in early conservative prophylaxis for my daughter?
Current recommendations would be for close surveillance as well as consideration of oral contraceptives (OCs). Studies have consistently shown that using OCs reduces the risk of ovarian cancer in the general population. In a 1992 analysis of 20 studies of OC use and ovarian cancer, researchers from Harvard Medical School found that the risk of ovarian cancer decreased with increasing duration of OC use. Results showed a 10 to 12 percent decrease in risk after 1 year of use, and approximately a 50 percent decrease after 5 years of use. More recent studies have demonstrated that the risk is also decreased in BRCA carriers as well.
I have provided a link to you so you can review the literature.
Facts and myths about ovarian cancer
Will the CA125 test be able to predict if I have ovarian cancer?
The CA125 test: It is NOT a screening tool. CA125 is a non-specific blood test that can be abnormal in patients with ovarian cancer as well as many non-cancerous conditions including inflammation of the peritoneal surface. For women who previously have not been diagnosed with ovarian cancer, elevated CA125 could be anything from endometriosis or a bladder infection to presence of menstrual period. It is approved by the FDA as a means of monitoring ovarian cancer, but should not be used as a screening test for the disease, particularly in pre-menopausal women. Currently, the morphologic or anatomical characteristics of the ovary, as seen by ultrasound or computed tomography, are the most accurate means for evaluating a suspected ovarian cancer.
Ovarian Cancer Chemotherapy and Other Non-Surgical Approaches
What information is available regarding the protocols, effectiveness, and side effects of continuing treatment (following successful first line treatment for Stage IIIC) and is treatment superior to "watch and wait" after successful first line treatment?
This topic has been, and continues to be, widely debated, primarily because the risk of disease recurrence after successful front-line treatment of Stage IIIC ovarian cancer may be as high as 40% to 50%. Many different investigators have tried to reduce this risk even further by administering additional (consolidation) treatment to complete responders (no evidence of disease after completing the initial six cycles of platinum and paclitaxel based chemotherapy). Different consolidation or maintenance treatments have been attempted, such as whole abdomen radiotherapy, intraperitoneal chromic phosphate, radioimmunotherapy, intraperitoneal chemotherapy, high-dose chemotherapy with haematopoietic support, prolonged administration of the first-line regimen, second-line single-agent chemotherapy, and biological agents. Clinical studies have given conflicting and often inconclusive results. Recently, Markman et al. reporting for the Gynecologic Oncology Group published results of a randomized trial comparing 3 or 12 cycles of single-agent paclitaxel following standard front-line therapy for advanced-stage ovarian cancer (J Clin Oncol. 2003 Jul 1;21(13):2460-5). Patients who received 12 cycles had a median progression-free survival time of 28 months, compared to 21 months for patients in the 3 cycle treatment arm. There was no difference in overall survival time, however, between the two groups, indicating this program of consolidation therapy can delay the timing of recurrence but does not appear to impact long-term survival outcome. Other investigators have delivered additional chemotherapy treatments (after front-line therapy) via the intraperitoneal route. In 1998, Barakat et al. (Gynecol Oncol. 1998 Apr;69(1):17-22) reported that 3 cycles of consolidation intraperitoneal chemotherapy with cisplatin and etoposide resulted in a significant extension in median disease-free survival time. These and other studies of consolidation treatment have yet to conclusively demonstrate a significant advantage in overall survival time. Ultimately, the decision to administer consolidation therapy should be based on the initial response to treatment, the patient’s willingness to undergo further treatment and experience side effects, and the patient’s long-term goals and objectives and only after a thorough discussion of these issues with her treating oncologist. For a comprehensive review of this topic see the article by Gadducci et al (Consolidation and maintenance treatments for patients with advanced epithelial ovarian cancer in complete response after first-line chemotherapy: A review of the literature. Crit Rev Oncol Hematol. 2005 Aug;55(2):153-66).
Ovarian Cancer Detection and Diagnosis
How may CA125 levels reveal ovarian cancer recurrence?
Typical CA125 levels in women are less than 35U/ml. For ovarian cancer patients, we consider an adequate response to therapy as achieving a baseline CA125 level of 20U/ml or less. Once the CA125 levels have normalized in ovarian cancer patients, we cannot necessarily rely on standard laboratory values to determine what is “normal.” We interpret laboratory results from each patient on an individual basis, relying on the history of their specific disease and prior CA125 levels. For example, a patient whose CA125 value normally is at 8U/ml could be lulled into thinking she has plenty of leeway before her value reaches the standard limit of 35. If her CA125 level doubles to 16U/ml, we believe this may be evidence for a recurrence of cancer. At this point, radiologic exams would be warranted to try and locate the recurrence. Still, a combined PET/CT evaluation can detect cancer as small as 8 – 10 millimeters.
If no cancer can be located, CA125 levels and radiologic tests will be used monitor whether a recurrent cancer appears. Since there are many reasons other than cancer to explain why CA125 levels may slightly increase, beginning a chemotherapy regimen without radiologic evidence of disease would be a risky option. Another option is to perform a diagnostic surgery, using laparoscopy as a minimally invasive way to look inside the body cavity for recurrent cancer. It is controversial whether early detection of recurrent ovarian cancer has a significant impact on long-term survival. Our feeling is that, at least in theory, a proactive approach to early detection facilitates identifying recurrent disease while it is hopefully still small and more amenable to surgical intervention followed by chemotherapy.
Is there a role for laparoscopy in the diagnosis of an ovarian mass?
The benefits of laparoscopy are:
- it is a minimally invasive approach with a shorter recovery time.
The risk of laparoscopy, if ovarian cancer is present, is:
- the ovarian cyst may rupture during removal. This can result in a higher stage of disease being assigned and the possible need for chemotherapy (whereas chemotherapy might have been avoided had the cyst not been ruptured during surgery).
If ovarian cancer is discovered at the time of laparoscopy:
- you should have a complete and informed discussion with your surgeon about the possible options in this situation. In general, most surgeons recommend proceeding directly to a complete ovarian cancer staging operation, with possible removal of the other ovary and the uterus. It is important to determine beforehand whether this procedure will be done at the same time as removal of the ovarian mass and whether it can be accomplished laparoscopically or via the standard open laparotomy approach. Most surgeons will recommend the laparotomy approach if ovarian cancer is discovered, as this is the community standard of care and presents the best opportunity for tumor debulking should there be any tumor spread outside of the ovary.
I have symptoms common to ovarian cancer (ie. bloating, constipation), cysts on my ovaries and low CA125 -- is watchful waiting okay or are there other proactive steps I should take?
Unfortunately, the symptoms of early-stage ovarian cancer are very non-specific. This means that there are many non-ovarian cancer conditions that can produce similar symptoms and be confused with ovarian cancer. This is one of the main reasons why ovarian cancer is so difficult to detect at an early stage. The CA125 is not necessarily a reliable means of excluding the presence of an ovarian cancer. In fact, we know that of women with Stage I and II ovarian cancer, about 50% will have a normal CA125 level at the time of diagnosis. The decision to continue with close observation (serial pelvic sonograms) or proceed with surgical intervention (for diagnosis and treatment if necessary) should be primarily based on the appearance of the ovarian cysts over time and the associated symptoms. If the cysts are increasing in size or complexity (that is, there are ‘septations’ or solid areas) or symptoms are worsening, then surgery should be considered. If the cysts decrease in size or remain stable and symptoms resolve, then continued observation is usually the preferred management.
Though I had my ovaries and uterus removed many years ago, my doctors now tell me I have a fluid-filled ovarian cyst, but they don't know if it's cancerous until it is removed and biopsied. How can ovarian cancer appear even if my ovaries were removed?
The most likely scenario is that you have what is called a ‘peritoneal inclusion cyst’, which form as a result of benign fluid becoming trapped beneath adhesions or scar tissue created from previous surgery. Often times, these can be observed over time, without surgery, as long as they remain stable and do not cause symptoms. Although less likely, it is also possible that a very small portion of one of the ovaries was inadvertently not removed at the time of hysterectomy; this is called ovarian remnant symdrome. In this case, it is possible that the ovarian remnant is forming cysts. Even more uncommon is a condition called primary peritoneal carcinoma. This disease looks and acts like ovarian cancer but in fact arises from the peritoneal cells lining the abdominal cavity (incidentally, these are the same cells from the surface of the ovary that give rise to most cases of ovarian cancer). Unfortunately, it is very difficult to tell the difference between these conditions based on imaging studies alone, and definitive diagnosis does usually require some type of surgery to find out what it is. The decision about conservative observation or surgical intervention should only be made after a thorough discussion with your treating clinician.
Ovarian Cancer Surgery
Should a specialist perform surgery for an ovarian cyst?
Women, in conjunction with their surgeon, should make this decision based on the degree of probability that an ovarian cancer is present. In general, if there is a moderate to high level of suspicion that ovarian cancer is present, a gynecologic oncologist is the best choice to do the surgery or at least be available to assist in the surgery in the event that ovarian cancer is found. In addition, the surgery should be completed at a center that performs many ovarian cancer surgeries. Population-based outcome studies have shown that when women with ovarian cancer undergo surgery at a “high-volume” center, they survive longer than if the surgery is performed at a center with limited ovarian cancer experience. (More information in new release and journal club review.) Diagnostic algorithms in published medical literature compute the percentage risk of ovarian cancer based on parameters such as the patient’s age, menopausal status, degree of abnormality of CA125, and certain characteristics of the ovaries as seen on ultrasound. These diagnostic algorithms can be used to decide whether a surgery should be performed by experts in ovarian cancer surgery or your general gynecologist.
Can surgery cause ovarian cancer to spread?
This myth may have originated because some patients may not have received a CT scan after being diagnosed with an ovarian mass, and even if a CT scan is performed, it may not be sensitive enough to reveal very small metastases. When surgery to remove the mass reveals metastatic ovarian cancer unbeknownst to the patient, their family and the physician, the perception is that some element of the surgery caused the cancer to spread. In reality, the surgery may be a more sensitive diagnostic tool to detect the spread than other tools that had been used in these cases.
How likely is the risk of colostomy (an external bag to hold stool) as a result of ovarian cancer surgery?
It is extremely uncommon that patients will need a colostomy bag during initial ovarian cancer debulking surgery. Only about three percent of patients need such an intervention. In most cases, if the colon needs to be removed, surgeons can reattach it.
Is there a way to diagnose ovarian cancer without surgery? Can a biopsy of the ovary be performed?
Non-surgical techniques to definitively diagnose ovarian cancer currently are not available. Biopsies of ovarian cysts are not recommended. The limitations of attempting to diagnose ovarian cancer with biopsy techniques guided by ultrasound or CT are:
- rupture of the cystic mass when a biopsy needle is inserted with possible spread of the tumor to other sites.
- missing cancerous cells since some parts of the cyst may not contain cancer
Johns Hopkins scientists currently are studying innovative methods to detect ovarian cancer by identifying markers specific to the disease present in the blood. More information can be found in the Research section of this web site in a variety of news releases on several ovarian cancer blood test research projects.
How important is it to schedule surgery for ovarian cancer right after diagnosis? Is there a safe window of time? Should I wait for the specialized surgeon I want or settle for a surgeon with less experience in ovarian cancer?
It is our opinion that, in general, surgery for suspected ovarian cancer should be scheduled as soon as the patient can be medically cleared for surgery and undergo pre-operative preparation. That said, it is preferable to wait a short period of time (e.g. a week or so) to make sure that all important circumstances are optimized (operating room time, availability of intensive care unit bed etc). As far as the surgeon, this is probably the most important determinant of a successful surgical outcome (complete staging operation, optimal tumor debulking etc). It is far more important to have an experienced surgeon with the right philosophical approach to ovarian cancer surgery than to have the surgery performed more expediently by a less experienced operator.
Small Cell Ovarian Cancer in children - where should parents seek help and information on treatments and clinical trials?
Small cell carcinoma of the ovary is an extremely rare tumor. Because it is so uncommon, there is limited availability of clinical trials devoted to this tumor type specifically. The most comprehensive source for clinical trial information, that may not be specific to small cell carcinoma of the ovary but that the patient might still be eligible for, is the National Cancer Institute website (www.cancer.gov). Small cell carcinoma of the ovary tends to occur in younger individuals and may be associated with para-neoplastic syndromes (e.g. hypercalcemia). Unfortunately, the prognosis is quite guarded. Nevertheless, there have been several reports in the literature of long-term survival with a multi-modality approach (surgery and chemotherapy) to treatment. In 1997, Tewari et al (Gynecol Oncol. 1997 Sep;66(3):531-4) reported a case of small cell carcinoma of the ovary diagnosed during pregnancy that was treated with cytoreductive surgery and multi-agent chemotherapy (vinblastine, cisplatin, cyclophosphamide, bleomycin, doxorubicin, and etoposide). In this report, the patient was alive and without evidence of disease 5(1/2) years after diagnosis. Rana et al. (Obstet Gynecol. 2004 May;103(5 Pt 2):1120-3) recently reported a similar case of advanced-stage (Stage IIIC) small cell carcinoma of the ovary in a 19-year old patient who was treated with conservative surgery and multi-agent chemotherapy consisting of vinblastine, cisplatin, cyclophosphamide, bleomycin, doxorubicin, and etoposide. Finally, Sholler et al. (J Pediatr Hematol Oncol. 2005 Mar;27(3):169-72) also recently described a case of small cell carcinoma of the ovary in an 11-year old patient that achieved long-term survival.
Types and stages of ovarian cancer