Many GYN oncologists seem to be in denial about long-term and late effects of radiation and chemotherapy. I understand that physicians do not want to emphasize these possible life-altering effects when they feel they need to get a patient into therapy as soon as possible.
I know that survivor rates are going-up, that new statistics are only relatively recently available for following-up on such effects, especially in relation to GYN cancers. Today, many women still fear the stigma of admitting to having abnormal PAP smears, much less being diagnosed with GYN cancer.
Moreover, this seems to be an issue with which the medical and health care professions, in general, have difficulty admitting that there can be very real and very painful or uncomfortable long-term and late effects of treatment.
I sometimes wonder if this is a subtle form of sex discrimination in that all the patients are women, so these effects are seen as more emotional than physical (as are many women's health issues).
While depression is, understandably, an almost unavoidable concomitant of cancer diagnoses, it seems to me that I hear and read more complaints from women who survive reproductive cancers to the effect that they are loosing their mind, becoming hypochondriacs, or are in constant unexplained pain that is treated lightly by their physicians.
I am not a physician. I am a two-time survivor of GYN cancers. In 1986, at 32 years of age, I was diagnosed with cervical cancer. I underwent several months of daily external radiation and two treatments of internal radiation. I did not undergo a hysterectomy (radiation without surgery was recommended by most GYN oncologists at the time).
I was placed on long-term hormone replacement therapy and took both estrogen and progesterone for a number of years, although it took me a long time to convince doctors that "standard" dosage for post-menopausal women was not "standard" in terms of its effects on my body. I had monthly cramps (I seldom had cramps when I was menstruating). My breasts were exquisitely tender, more so than during my one pregnancy and breast-feeding. Finally, one female doctor listened and lessened my dosage. However, I still had mood swings I did not have before hormone replacement. Finally, in my mid-forties, I simply stopped taking the replacements, with the advise and consent of my physician.
In 2002, at age 48, I was diagnosed with vaginal, uretheral, and vulvar cancer. These cancers were aggressive, and had spread to inguinal lymph nodes on the right side. I had a "biopsy" of the lymph nodes, during which they were actually removed. I then had several months of external radiation and chemotherapy. I was told by one doctor that unless I underwent pelvic exteneration (a radical surgical treatment that removes all organs from the pelvic cavity), I would die within two years. I had no intention of undergoing such radical surgery. I consulted other doctors. What they all agreed upon was the fact that, statistically, given my previous levels of radiation, I could not be given what is typically a "curative" dose of radiation for the current cancer. One doctor, the one who ultimately became my GYN oncologist, did recommend chemotherapy with cisplatin along with my radiation.
Since it is now 2010, I obviously outlived the prognosis. However, I do have vulvar ulceration accompanying radiation necrosis and more recent problems with neuropathy in my lower spine and right leg.
This past summer, I underwent 55 hyperbaric oxygen chamber treatments. This has reduced my vulvar ulceration and, with my determined wound care, the ulceration almost begins to heal. However, one recent consultation revealed that I may have the beginning of a vaginal fistula (communicating cavity unknown).
It is very difficult to locate physicians who understand long-term and late effects of radiation and chemotherapy, especially as related to treatments for GYN cancers. If you are like many cancer patients and have exhausted your fiscal and emotional resources, it is a most daunting task, verging on the impossible.
Aside from my cancers, most people would agree I've had a difficult life. I understand when doctors, and even friends and family members, wish to attribute my ongoing health problems to post-traumatic stress disorder from "everything you've been through." I understand, but lately I've come to realize that I do not have to like or accept those conclusions.
To all women everywhere who have had their health problems attributed to their "weaker sex", who feel crazy, marginalized, and dismissed--but especially to those who have undergone treatments for GYN cancers--I tell you that you are as sane as the next person (which may not be saying much). Take heart, other women know what you have been through and are going through. We know you are uncomfortable and in pain, just as we are.
Do not accept the first dismissal of your pain or suffering as the emotional side of the "weaker sex". It is difficult, but persevere and try to locate that doctor who understands the long-term and late effects of radiation, chemotherapy, and other invasive cancer treatments and diagnostic procedures.
I am still trying to locate such a physician. I may never find that doctor, but I continue to try.
May you all be well, regardless of your health problems.