HealthScouter Ovarian Cancer Patient Advocate
Equity Press - HealthScouter.com
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Riverside, California 92507
www.healthscouter.com
Purchasing this book entitles you to free updates at www.healthscouter.com/OvarianCancer
Edited By: Katrina Robinson
Includes Ovarian Cancer from Wikipedia http://en.wikipedia.org/wiki/Ovarian_cancer
HealthScouter Ovarian Cancer Patient Advocate: Ovarian Cancer Symptoms and Signs of Ovarian Cancer (HealthScouter Ovarian Cancer)
ISBN: 978-1-60332-262-1
Smashwords Edition
Edited Components are Copyright (c) 2009 Equity Press
Permission is granted to copy, distribute and/or modify this document under the terms of the GNU Free Documentation License, Version 1.2 or any later version published by the Free Software Foundation; with no Invariant Sections, no Front-Cover Texts, and no Back-Cover Texts. A copy of the license is included in the section entitled "GNU Free Documentation License".
HealthScouter and Equity Press do not provide medical advice. The contents of this book are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis or treatment. Always seek advice from a qualified physician or health care professional about any medical concern, and do not disregard professional medical advice because of anything you may read in this book or on a HealthScouter web site. The views of individuals quoted in this book are not necessarily those of HealthScouter or Equity Press.
Equity Press does not endorse any company or product, and listing on the HealthScouter web site is not linked to corporate sponsorship. We do not make a claim to being comprehensive or up to date. If you would like to recommend information to include in this book, please contact us – we would be very happy to hear from you.
Introduction to Ovarian Cancer
Ovarian Cancer Symptoms Consensus Statement
Desmoplastic Small Round Cell Tumor
Surface Epithelial - Stromal Tumors
Sex Cord- Gonadal Stromal Tumor
Tumor types in order of prevalence
GNU Free Documentation License
References: Desmoplastic Small Round Cell Tumor
References: Surface Epithelial Stromal Tumor
References: Sex Cord Gonadal Stromal Tumor
References: Follicular Cyst of Ovary
References: Primary Peritoneal Cancer
Dear Reader,
I like to think of myself as a polite, well-reasoned person. I rarely speak out or complain. When a waitress spills something on me, or if my meal is cold—or if I’m overcharged—I generally try to be as polite as possible. I don’t like to make very many waves. I often secretly hope that the manager will hear about my predicament and come out and offer me a free meal, or something similar. I generally hope that my polite and respectful demeanor pays off. And it does happen from time to time. You know, I think many people are brought up to believe that this is just good manners. It’s how you’re supposed to behave. And if you knew me personally, I think you’d agree that I’m generally pretty reserved. Of course my wife may raise an objection or two (!), but I really believe that it’s important to treat others as you would like to be treated. We’re talking about the golden rule here—it works well and it applies to almost every life circumstance.
But I have to admit that when it comes to my health, or the health of someone I care about—all bets are off. I want to know what’s going on—when, why, where, and how. And I make these feelings known. I tend to get downright assertive. It’s just something I feel very strongly about. And I feel that when you are in a hospital, or if you’re brushing up against the healthcare system, that you should feel the same way. It’s unfamiliar turf, and the professionals who work in this system often take advantage of their positions. They may use some jargon to hide the whole truth— or they may say something without checking to make sure you understand completely. They may present the options that are best for them, perhaps the most profitable or convenient. Now I’m not saying this goes on everywhere. There are many professionals in the business of health who go out of their way to make sure you have the best care. And I’m not suggesting that you should become a bully, or purposefully annoying—absolutely not. But I am suggesting that I think it’s OK for you to step outside of your typical comfort zone, and put on your patient advocate hat. Because you, the patient or patient advocate, care the most about your care—not the medical system or healthcare providers.
HealthScouter was created to help patients become better advocates for their own medical care. Because when it comes to your healthcare, the stakes are high. There are none higher. And healthcare is one area where consumers (us, the sick people) are notoriously unaware of their options. And that’s why I’m publishing these books. To help you understand your options, and to help you get the best care possible. I want to help you become a better advocate for yourself and for your loved ones.
It’s my sincere hope that you can take this book with you to the hospital, to be read in the waiting room or by the bedside—and when you see a relevant patient comment you can use this book to ask questions of your health care providers. My advice: Ask lots of questions! Providers are busy people who generally go about their business with little questioning, delivering care as they see fit—making quick decisions—and again, nobody is going to care as much about your health as you. So now, more than ever, you need tools at your disposal to get the best care possible. One of the tools at your disposal is this HealthScouter book and the material within. You need to be armed with questions, and you need to ask questions all of the time. And so the difficult part is now to understand the right questions to ask.
That brings me to an explanation of how these books are structured. HealthScouter books include a number of what we call patient comments. These patient comments are summaries of what people have experienced. They’re first hand accounts of what you may expect. These experiences effectively help you “catch up,” and understand what outcomes are possible. They expose you to the treatments are available, and provide insight as to potential outcomes. They help you understand what other people are doing. So if you find yourself stuck feeling like you’re receiving substandard medical care—or if you need a push to broach the subject, you can take this book to your provider and say, “Hey, I read here that another patient had this treatment—is that an option for me? If not, Why?” I believe that other peoples’ experience is the most valuable way for you to formulate and build a list of good questions for your healthcare providers.
That notion is at the core of the HealthScouter philosophy.
So HealthScouter, by providing patient comments about a particular medical condition, will help expose you to what other people have experienced about a particular medical problem. If you know what other people have experienced, you can better understand what your options are. You’ll be better informed and you’ll have some questions to ask—it’ll be like you’ve had access to dozens of other people who have gone through the same thing you’re going through. And so armed, maybe you’ll be able to move through your condition and get back on the road to health, and maybe you’ll be able to do this with more grace than I have. And that is my sincere wish.
It’s also my wish that perhaps when a doctor or nurse sees this little book, that they’ll think twice about the care they’re about to provide—knowing that the owner is a little bit better prepared, a little bit better armed—and yes, maybe even downright assertive.
I hope this book helps.
Yours truly,
Jim Stewart
San Diego, California
The purpose of HealthScouter is to help you understand your medical condition as quickly and easily as possible. We believe this can best be accomplished by reading about other people and their experiences negotiating their health and care. We try to leave out complicated medical jargon. And we’ve spent a considerable amount of time structuring this book so that it’s easy to use. It’s important to know that this is not the sort of book you read from beginning to end. Of course you may do so, but this book is more meaningful if you flip through quickly and scan for applicable material. Again, it’s all about the patient commentary: The darkly shaded comments indicate one patient initiating a new discussion, and the light or clear comments are other comments associated with that same condition. So you should begin by looking for information from other patients who are experiencing the same aspect of the same medical condition that you studying. You can do this quickly by scanning through the book, focusing on the dark shaded comment boxes.
By scanning the patient comments you’ll find information about various aspects of a condition, all grouped together, in an easy-to-read format. In this way you can immediately begin reading about other patients and their experiences with your particular medical condition – and you can benefit immediately from their experiences.
Introduction to Ovarian Cancer
Ovarian cancer is a cancerous growth arising from different parts of the ovary.
The most common form of ovarian cancer (≥80%) arises from the outer lining (epithelium) of the ovary.[1] Other forms arise from the egg cells (germ cell tumor).
In 2004, 25,580 new cases were diagnosed and 16,090 women died of ovarian cancer. The risk increases with age and decreases with pregnancy. Lifetime risk is about 1.6%, but women with affected first-degree relatives have a 5% risk. Women with a mutated BRCA1 or BRCA2 gene have a 25% risk.[2] Ovarian cancer is the fifth leading cause of death from cancer in women and the leading cause of death from gynecological cancer.[3]
10-year relative survival ranges from 84.1% in stage IA to 10.4% in stage IIIC.[4]
Ovarian cancer causes non-specific symptoms, which contribute to diagnostic delay, resulting in a late stage and a poor prognosis.[5] Most women with ovarian cancer report one or more symptoms such as abdominal pain or discomfort, an abdominal mass, bloating, back pain, urinary urgency, constipation, tiredness and a range of other non-specific symptoms, as well as more specific symptoms such as pelvic pain, abnormal vaginal bleeding or involuntary weight loss.[6][7][8] There can be a build-up of fluid in the abdominal cavity (this is called ascites).
An abnormal physical examination (including a pelvic examination), a blood test (for CA-125, more specifically) or medical imaging studies can provide evidence leading to an ovarian cancer diagnosis. The diagnosis can be confirmed with a surgical procedure (open or keyhole surgery) to inspect the abdominal cavity, take biopsies (tissue samples for microscopic analysis) and look for cancer cells in the abdominal fluid. Treatment usually involves chemotherapy and surgery, and sometimes radiotherapy.[9]
In most cases, the cause of ovarian cancer remains unknown. Older women, and in those who have a first or second degree relative with the disease, have an increased risk. Hereditary forms of ovarian cancer can be caused by mutations in specific genes (most notably BRCA1 and BRCA2, but also in genes for hereditary nonpolyposis colorectal cancer). Infertile women and those with a condition called endometriosis, those who have never been pregnant and those who use postmenopausal estrogen replacement therapy are at increased risk. Use of oral contraceptive pills is a protective factor. The risk is also lower in women who have had their uterine tubes blocked surgically (tubal ligation).[10][11]
Patient 1:
I went to my gynecologist for my annual exam Thursday. All has been going well with me EXCEPT there has been two occasions where I have had a full bloated feeling. Keep in mind this has only happened twice in almost two years so I contributed this to just something going on with my gastrointestinal tract and it clears up in about five days. My only other problem has been some pain in the ovary area a few times. Again this may only happen once or twice a year and has occurred over a period of years. I happened to mention it to my doctor since it has recently happened on my left side and normally it is always on my right. I am 59 and post menopausal. He has scheduled me for a transvaginal ultrasound (or sonogram) to just “make sure” that all is okay. I am adopted so there is no medical history and he says that ovarian cancer has a tendency to be genetic. Any words of wisdom?
Patient 2:
If your symptoms have been going on for two years and haven't increased in severity or frequency, there's probably little to worry about. Ovarian cancer usually advances very quickly.
Patient 3:
As far as I know, the bloated feeling doesn't go away when you have ovarian cancer and the cancer advances quickly. A friend of mine, sadly, has ovarian cancer and her belly got bigger and bigger. As far as the pain in the ovaries, I've had that off and on for a long time. I have ovarian cysts which are painful.
The exact cause is usually unknown. The disease is more common in industrialized nations, with the exception of Japan. In the United States, females have a 1.4% to 2.5% (1 out of 40-60 women) lifetime chance of developing ovarian cancer. Older women are at highest risk. More than half of the deaths from ovarian cancer occur in women between 55 and 74 years of age and approximately one quarter of ovarian cancer deaths occur in women between 35 and 54 years of age.
The risk of developing ovarian cancer appears to be affected by several factors. The more children a woman has, the lower her risk of ovarian cancer. Early age at first pregnancy, older age of final pregnancy and the use of low dose hormonal contraception have also been shown to have a protective effect. Ovarian cancer is reduced in women after tubal ligation.
The relationship between use of oral contraceptives and ovarian cancer was shown in a summary of results of 45 case-control and prospective studies. Cumulatively these studies show a protective effect for ovarian cancers. Women who used oral contraceptives for 10 years had about a 60% reduction in risk of ovarian cancer (risk ratio .42 with statistical significant confidence intervals given the large study size, not unexpected). This means that if 250 women took oral contraceptives for 10 years, one ovarian cancer would be prevented. This is by far the largest epidemiological study to date on this subject (45 studies, over 20,000 women with ovarian cancer and about 80,000 controls).[12]
The link to the use of fertility medication, such as Clomiphene citrate, has been controversial. An analysis in 1991 raised the possibility that use of drugs may increase the risk of ovarian cancer. Several cohort studies and case-control studies have been conducted since then without demonstrating conclusive evidence for such a link. [13] It will remain a complex topic to study as the infertile population differs in parity from the "normal" population.
There is good evidence that in some women genetic factors are important. Carriers of certain mutations of the BRCA1 or the BRCA2 gene are notably at risk. The BRCA1 and BRCA2 genes account for 5%-13% of ovarian cancers[14] and certain populations (e.g. Ashkenazi Jewish women) are at a higher risk of both breast cancer and ovarian cancer, often at an earlier age than the general population. Patients with a personal history of breast cancer or a family history of breast and/or ovarian cancer, especially if diagnosed at a young age, may have an elevated risk.
A strong family history of uterine cancer, colon cancer, or other gastrointestinal cancers may indicate the presence of a syndrome known as hereditary nonpolyposis colorectal cancer (HNPCC, also known as Lynch II syndrome), which confers a higher risk for developing ovarian cancer. Patients with strong genetic risk for ovarian cancer may consider the use of prophylactic, i.e. preventative, oophorectomy after completion of childbearing.
A Swedish study, which followed more than 61,000 women for 13 years, has found a significant link between milk consumption and ovarian cancer. According to the BBC, "[Researchers] found that milk had the strongest link with ovarian cancer—those women who drank two or more glasses a day were at double the risk of those who did not consume it at all, or only in small amounts." [15] Recent studies have shown that women in sunnier countries have a lower rate of ovarian cancer, which may have some kind of connection with exposure to Vitamin D.
Other factors that have been investigated, such as talc use, asbestos exposure, high dietary fat content, and childhood mumps infection, are controversial and have not been definitively proven.
Patient 1:
I have been having pain and bloating in my abdomen. I am also having constipation and gas. I have had a hysterectomy and both ovaries have been removed. I didn't think cancer was possible but an email told me it was. So if anyone knows the symptoms for either ovarian or peritoneal cancer or a reason for symptoms I am having please let me know. I have had breast cancer in the past and hope that these symptoms are just irritable bowel syndrome.
Patient 2:
The symptoms you're having may have nothing to do with cancer. First place I would start is with a good gastroenterologist. They'd probably want to do either a GI series or a colonoscopy. Gas and bloating can be caused by diverticulosis, which are pockets in the intestines. They trap gas and some of the food you eat, so the food stays around longer for the intestinal bacteria to work on. Sometimes a change in diet can help. Also, diverticulosis is not in itself a problem, but if the pockets get infected (which is then called diverticulitis), it's very dangerous.
It's also possible you could have Irritable Bowel Syndrome, Infectious Bowel Disease, or other bowel problems.
Patient 3:
I had all those symptoms for years and I just recently got diagnosed with stage 3 ovarian cancer. I had a complete hysterectomy and a part of my bowel removed. I don't want to scare you but you need to have a ca-125 blood test and an ultrasound.
A pooled analysis of ten prospective cohort studies conducted in a number of countries and including 529,638 women found that neither total alcohol consumption nor alcohol from drinking beer, wine or spirits was associated with ovarian cancer risk."[16] The results of a case-control study in the region of Milan, Italy, "suggests that relatively elevated alcohol intake (of the order of 40 g per day or more) may cause a modest increase of epithelial ovarian cancer risk"[17]. "Associations were also found between alcohol consumption and cancers of the ovary and prostate, but only for 50 g and 100 g a day."[18] "Statistically significant increases in risk also existed for cancers of the stomach, colon, rectum, liver, female breast, and ovaries."[19]
Ovarian cancer is classified according to the histology of the tumor, obtained in a pathology report. Histology dictates many aspects of clinical treatment, management, and prognosis.
Surface epithelial-stromal tumor, also known as ovarian epithelial carcinoma, is the most common type of ovarian cancer. It includes serous tumor, endometrioid tumor and mucinous cystadenocarcinoma.
Sex cord-stromal tumor, including estrogen-producing granulosa cell tumor and virilizing Sertoli-Leydig cell tumor or arrhenoblastoma, accounts for 8% of ovarian cancers.
Germ cell tumor accounts for approximately 30% of ovarian tumors but only 5% of ovarian cancers, because most germ cell tumors are teratomas and most teratomas are benign. Germ cell tumor tends to occur in young women and girls. The prognosis depends on the specific histology of germ cell tumor, but overall is favorable.
Mixed tumors, containing elements of more than one of the above classes of tumor histology.
Ovarian cancer can also be a secondary cancer, the result of metastasis from a primary cancer elsewhere in the body. Common primary cancers are breast cancer and gastrointestinal cancer (in which case the ovarian cancer is a Krukenberg cancer). Surface epithelial-stromal tumor can originate in the peritoneum (the lining of the abdominal cavity), in which case the ovarian cancer is secondary to primary peritoneal cancer, but treatment is basically the same as for primary surface epithelial-stromal tumor involving the peritoneum.
Patient 1:
A few months ago I was diagnosed with polycystic ovary disease. They sent me for an ultrasound and it turns out I have a 14cm cyst with, apparently, something about the echo readings that required further testing. So I had an abdominal CT scan done, and then a pelvic exam by my gynecologist. I just got the results back from the CT scan and they said the “pelvic mass” required further evaluation, so they've scheduled me for an MRI. I'm supposed to have a laparatomy next month.
I'm getting a little nervous about all of this...to have gone from one month thinking everything was fine in the world to learning I have polycystic ovary disease and could potentially have all kinds of problems, to finding out I have this enormous cyst, then to have all these tests, including all kinds of blood tests. I'm just wondering what all these tests could mean...if anyone has any ideas? Why would they need an ultrasound and a CT and an MRI?
Patient 2:
Have they also ordered a blood test called the CA-125 ? This is a test that looks for a specific cancer antigen that is usually present in high numbers when ovarian cancer is present. 35 and under is normal. Unfortunately, pre-menopausal women have a greater chance of having either a false positive (where you score high and there is no cancer) or a false negative (where you score normal and there is stage 1 ovarian cancer) than post menopausal women. However, this can nevertheless be a source of additional information and I am rather surprised that your doctors have not requested this test.
Usually the ultrasound is the gold standard for ovarian cysts and the only reason I can think of to do the MRI would be to check out the rest of that area and be sure there is nothing that the ultrasound may have missed. I am not sure why they would call for both a CT scan AND an MRI, so perhaps you should ask your doctor about this.
If cancer is at all suspected, you absolutely NEED to have this surgery done by a gynecological oncologist. These gynecologists are specially trained in this field and should cancer be present, they can take the proper precautions during the surgery.
Even very large cysts such as yours are quite common, even in younger women. The likelihood that it is something dangerous is extremely small.
Two case-control studies, both subject to results being inflated by spectrum bias, have been reported. The first found that women with ovarian cancer had symptoms of increased abdominal size, bloating, urge to pass urine and pelvic pain.[8] The smaller, second study found that women with ovarian cancer had pelvic/abdominal pain, increased abdominal size/bloating, and difficulty eating/feeling full.[21] The latter study created a symptom index that was considered positive if any of the six symptoms "occurred under 12 times per month but were present for over one year". They reported a sensitivity of 57% for early-stage disease and specificity 87% to 90%.
Patient 1:
I'm a 57-year-old woman who has had an adnexal cyst for as long as I can remember. For the past 10 years I have had the cyst monitored by ultrasound every six months. It has always shown to be fluid filled around 2.5 cm. My last ultrasound was last month, and I was shocked to find that things have changed for the worse. It is now slightly larger at 3 cm but also now has a solid component protruding into the cyst with 4 mm echogenic focus. Unfortunately, the technologist did not access for Doppler vascularity. Given my age and the results, I am fully prepared for the finding to be ovarian cancer. My doctor has referred me to a gynecologist. It's been three weeks since the referral and I'm way down on the waiting list and still do not know when my initial appointment will be. My concern is that I read on the internet that ovarian cancer is very fast growing and can go from stage 1 to stage 4 within a year. Is this true?
Patient 2:
I was in exactly your situation over the past years. In 2007 they discovered an ovarian simple cyst which was about 7 cm. At that time, all the doctors said that it was a normal follicular cyst but at my follow up ultrasound it had grown just slightly to around 7.5 cm. Like you, I had follow-up ultrasounds every six months and it grew in increments of .3 to .5 cm at a time. Then at one point my cyst developed a very small solid part of a few mms and this made me extremely nervous. My gynecologist at that time told me that a few mm was nothing to worry about and the radiologist said that this sometimes happens with cysts that have been there for a long time. Finally, this past February I went for an ultrasound and the cyst was almost 9 cm. The radiologist compared this result to all of my previous results and said that although the cyst did not look dangerous, it was taking up space and he left it up to the treating physician to decide whether or not to remove it. My gynecologist told me that perhaps it was time, since I did not want to have a more complicated surgery to remove it later on. I had surgery this past April 28th and as suspected, it was a benign serous cyst.
Having been in your shoes, here is what I would recommend to you:
1. Get a copy of the radiology report and read it.
2. Contact your general practitioner and see if he or she can send you for a CA-125 test. This is a simple blood test that checks for a cancer antigen that is normally present in high numbers when ovarian cancer is present
3. Ask your friends and family for gynecologist recommendations and start phoning around to see if anyone can take you sooner.
Ovarian Cancer Symptoms Consensus Statement
In 2007, the Gynecologic Cancer Foundation, Society of Gynecologic Oncologists and American Cancer Society originated the following consensus statement regarding the symptoms of ovarian cancer.[22]
Ovarian cancer is called a “silent killer” because symptoms were not thought to develop until the disease had advanced and the chance of cure or remission poor. However, the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:
Bloating
Pelvic or abdominal pain
Pain in the back or legs
Diarrhea, gas, nausea, constipation, indigestion
Difficulty eating or feeling full quickly
Urinary symptoms (urgency or frequency)
Pain during sex
Abnormal vaginal bleeding
Trouble breathing
Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms. Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.
Several other symptoms have been commonly reported by women with ovarian cancer. These symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities. However, these other symptoms are not as useful in identifying ovarian cancer because they are also found in equal frequency in women in the general population who do not have ovarian cancer.