Fallopian Tube Cancer: Dealing With a Rare Disease

Fallopian Tube Cancer

by Laura Dolson

What if your cancer is so rare your doctor has never seen it before? Cancer of the fallopian tube (tubal cancer) is very rare, making up less than 1% of female reproductive cancers, which, in turn, make up about a sixth of the total number of cancers women get annually. To put this into perspective, in a city the size of New York, we would expect to find only about one case of tubal cancer per year. Understandably, it becomes more difficult to find information about a cancer this uncommon, which in itself can be frightening. Here is the most up-to-date information available about tubal cancer.

Risk Factors - Tubal cancer occurs most often in women over 50, but age is the only factor strongly associated with tubal cancer. Recently, there has been some evidence linking tubal cancer with the BRCA1 and BRCA2 gene mutations, which are implicated in breast and ovarian cancer. Until more studies are completed, however, this association is considered extremely tenuous. There may also be a very weak association with infertility. No other risk factors have been found for tubal cancer.
Diagnosis: The very first challenge in rare conditions such as tubal cancer is often not so much in making the diagnosis as in even suspecting that the problem exists. Sometimes, tubal cancer does have definite symptoms: pelvic pain or pressure and/or a clear or bloody vaginal discharge. But these symptoms are also present in other more common conditions, which will naturally be suspected first. As a result, tubal cancer is most often not diagnosed from symptoms at all. Rather, it is usually discovered during surgery (or, occasionally, ultrasound) being performed for other reasons. Additionally, cancer in the fallopian tubal is usually not of the fallopian tube - most often, it is ovarian cancer which has spread. This would not be labeled tubal cancer, although it takes careful examination for the physician to be able to tell the difference.
Prognosis: Tubal cancer is so rare that it is advisable to eye all statistics, particularly prognostic ones, with skepticism. Only about 1500 cases of tubal cancer have been reported in the scientific literature during the last century. As a result, most of the reported outcome information is based on outdated treatments and procedures, so it's difficult to draw conclusions that relate to today. An example of this is the change in prognostic statistics for tubal cancer that is confined to the fallopian tubes (stage I cancer). Reports as recent as the late 1980's give 5-year survival rates of around 60%, whereas data based on more recent staging and treatment protocols are showing rates of 85-90%, and even higher, for comparable cancer. Survival rates for cancer that has gone beyond the fallopian tube are even more variable depending on diagnostic procedures and treatments used in the individual cases, to the point where there simply are no stable statistics available at this time.
Treatment: Because tubal cancer spreads first and most easily to the uterus and ovary, the treatment for tubal cancer almost always begins with a total hysterectomy, which includes removal of the uterus, ovaries, and fallopian tubes. Ideally, a procedure called surgical staging is done at the same time, and, if further cancer is found, another procedure, called cytoreductive surgery should be added. If the cancer is found to be confined to the fallopian tube, there is some debate about whether chemotherapy should be used as an adjunct to the surgery. In all other cases, however, there is no doubt that chemotherapy, often a combination including cisplatin (or a similar drug) and paxlitaxel (Taxol) should be used. In addition, radiation therapy to the pelvis and abdomen have been shown to further reduce the chances of recurrence in cases where the cancer has spread outside the fallopian tube, and where surgery and chemotherapy have been able to reduce the size of the tumors to a point where radiation can be helpful.
Finding Medical Help: Obviously, the rarer the disease, the more difficult it is to find an experienced medical professional. Women who have been diagnosed with tubal cancer, should try to find a gynecologic oncologist who is experienced with this type of cancer. Realistically, this may not always be possible, but luckily, tubal cancer has a lot of similarities to the most common type of ovarian cancer. Therefore, finding a gynecologic oncologist experienced in treating ovarian cancer can be almost as good, particularly if he or she is experienced at performing the procedures of surgical staging and cytoreductive surgery. Also, although any given physician may not be acquainted with the latest treatments for tubal cancer, many health care professionals are becoming more comfortable with receiving information from patients. If it's possible to work with your doctor as a partner, one way to go is to print out information, such as this recent review of the literature about the treatment of tubal cancer. (Sorry, that link is no longer available. I'm currently looking for an alternative. LD)
Support groups: Many cancer patients find it helpful to talk to other people who are going through similar things, and support groups have been shown to be helpful in many ways. Unfortunately, women with tubal cancer can be difficult to find, even on the Internet. Happily, though, gynecological cancer and ovarian cancer groups, either face-to-face or online, should be welcoming to women with tubal cancer, and most of the issues are extremely similar. This site contains many options for connecting with others, including our Forum.

For more information and support, check out:

IntelliHealth brings you the basic facts about Fallopian Tube Cancer.

The Eyes on the Prize site has an email support list.

GO TO

Gyn Cancer Resource Page

HPV/Dysplasia Resource Page

Laura's Gyn Cancer Home

The material on this page and Web site is for informational and educational purposes only, and should not substitute for medical advice. Anyone having questions about the application of information appearing here to a specific person or situation should obtain advice from a qualified physician.