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SpiderLady
SpiderLady Member Posts: 3
edited January 2018 in Ovarian Cancer #1

Hello everyone. I have been suffering over the past year-and-a-half. I have a family history of ovarian cancer. On my mom's side out of five girls all but my mom and one aunt has passed away from uterine or ovarian cancer. The aunt that didn't pass away from a female cancer passed away from lung cancer. I am 42 years old. I have been having problems with nausea and vomiting pain in my lower and upper abdomen irregular periods prolonged periods and all of the other symptoms that go along with ovarian cancer. I just had a CT scan of my abdomen and pelvis which revealed a 4.2 cm Mass on my right ovary. The only testing I have had done for these problems is a AFP tumor marker test and the CT scan. They have also tested me for menopause which my hormones were normal. But I have been diagnosed with menopause and irritable bowel syndrome. My question is how do you get a doctor to treat you like you're not losing your mind. And what tests should be done? Since late last night the pain in my lower abdomen has become intense and is throbbing. I was awake most of the night. I have an appointment with my obgyn tomorrow. I just stopped taking the HRT because my menstrual cycle lasted 3 weeks and then I was off for 3 days and then back on for another 4 days until I stop the medication. I really just need to know what tests he should be doing? This has been a nightmare. I live in a very small town in the middle of nowhere. I can't seem to get a second opinion because all of the other doctors are not taking new patients. Unless that new patient has very good insurance. I haven't been able to work because of being sick what feels like all of the time. I'm sorry for going on and on I'm just extremely frustrated and worried. Nothing I have tried has helped with my symptoms. I am hoping he will do more tests. But I don't really have much faith in him at this point. Thank you for any advice you're able to give I greatly appreciate it. Things just seem to be getting worse and worse everyday .

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    edited January 2018 #2
    Ok, going to your ob/gyn is

    Ok, going to your ob/gyn is good.  With your family history it should put them on alert that this is your concerns - and they are real.  A CA125 blood test (0 -30 is normal) is a good test for ovarian and is kind of hit or miss for uterine.  Push the doctor -- you really have to be your own advocate here.  I know you are in the middle of nowhere - but it might be worth the trip to find a better doctor.

    I hope someone chimes in for you to see before you go to the doctor tomorrow.  PLEASE PUSH FOR ANSWERS.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited January 2018 #3
    SpiderLady~Here R 2 exhustive links that R things U need 2 know!

    Good morning “Spider Lady” Kiss

    You say you’re 42 and you live in a small town.  There are advantages and disadvantages for people living in small towns.  Being born in 1939 in a small town called Bassett, VA with a population of less than 3,000 was a “plus” when I was young.  Everyone knew everyone and also most people knew about everyone else and what they were doing, whether it be good or bad.  (Largely attributable to most of us being too poor to afford a “private” telephone line, but rates were cheaper if you had a “party” line.  You can only imagine the phone conversations folks “listened in on!”) Surprised  But in the “disadvantage” column was the fact that there was usually “one of a kind” professions—one doctor—one hotel—one high school—a couple of grocery stores—one small newspaper—only a couple of churches--one funeral home--one movie theatre (but admission was only a “dime”)—one big employer in the town.  Back then it was the Bassett Furniture Factory when furniture was made with “real wood”—not sawdust and glue!

                Nowadays things have changed.  The factory has closed and the furniture is coming in from China.  Knitting mills in nearby Martinsville, VA have closed and things are pretty “quiet”, even though when I return to town, I get a feeling of “being back home.”  The place carries special memories of childhood days.  But when you say you live in a small town and other doctors that you might wish to see are NOT taking any new patients, that doesn’t give you many choices.  Moreover, if I understand correctly, you seem to be without insurance right now because you are not gainfully employed because you are sick so much of the time. 

    Needless to say we women understand all too well the anxiety that accompanies “unexplained pains that continue off and on.”   And it is doubly frustrating when your efforts to find answers seem elusive.  Let’s hope that you can convince your ob/gyn doc, whom you will visit today, to listen to your pleas for more testing.  I’ve sometimes jokingly said, “When I get to Heaven, the first thing I’m going to do is hunt down “Eve” and give her a piece of my mind, and maybe a punch in the face.”  Oh well, there’ll be no “cat fights” in Heaven, so I’ll just have to enjoy that encounter only in my mind.  “Just joking.”  Eve had a good thing going, and made the decision to disobey God, and we women are paying the price with pain in childbirth and all kinds of gynecological cancers.  Oh well, I’ll stop short of the sermon today except to say that I’ve done things in my own lifetime for which I’ve had to ask God’s forgiveness, and He has forgiven me, so I’ll have to forgive Eve.  Can’t go to Heaven carrying a grudge! Innocent

    Now, I’ve found two good sources of information for you, and I’m going to put them in entirety here for you.  Moreover, I’m going to put them on a separate topic so that in the future others who are attempting to go through this “mine field” called gynecological cancers, will have a good source of information.  We can’t diagnose your case, we can only hope that you will learn what tests can be conducted to determine the source of your pain.  But I fear that your lack of insurance will limit the extent of exhaustive testing.  Given your family’s history of cancer, you have every right to be concerned.

    Armed with knowledge doctors will pay more attention to your complaints.  You can’t go to the doctors and diagnose your condition, but if you impress upon them that you know these are “likely symptoms” of Ovarian cancer, etc., they will pay more attention to your pleas. 

    So I’m hoping that this information will be something that you can use to help establish a reason for your pain, and ultimately to find a doctor who has a “compassionate ear” and will order as many tests as are necessary to find the source of your problem.  Any time we’ve been told that we have a 4.2 centimeter mass on one of our ovaries, 4.2 centimeters is equal to 1.653543 inches, it’s cause for deep concern.  Naturally, we would hope that proper testing can be done, as outlined in the articles below, and that the mass would be found to be benign.  That does happen you know. 

    Sincerely,

    Loretta

    _____________________________________________________________ 

    1.      https://www.cdc.gov/cancer/knowledge/pdf/cdc_gyn_comprehensive_brochure.pdf

    “ABOUT THIS BOOKLET -  This booklet was developed in support of the Centers for Disease Control and Prevention’s (CDC) Inside Knowledge: Get the Facts About Gynecologic Cancer campaign.

    The campaign helps women get the facts about gynecologic cancer by providing important “inside knowledge” about their bodies and health.   As you read this booklet, you will learn about the different types of gynecologic cancer. These are cancers that affect the female reproductive organs.

    They include cervical, ovarian, uterine, vaginal, and vulvar cancers.

    You will find information on:

    • Signs, symptoms, and risk factors related to each gynecologic cancer.

    • What you can do to help prevent gynecologic cancer.

    • What to do if you have symptoms.

    • What to do if you think you may be at increased risk for developing a gynecologic cancer.

     • Questions to ask your doctor.

    Each year, about 89,000 women in the United States are diagnosed with a gynecologic cancer. While all women are at risk for developing gynecologic cancers, few will ever develop one. Still, it is important to know the signs because there is no way to know for sure who will get a gynecologic cancer.

    The information included in this booklet will help you recognize warning signs so you can ask your health care provider about them. These signs and symptoms often are related to something other than gynecologic cancer. But it is important for your overall health to know what is causing them. Important words to know appear in italics and are defined in the glossary at the back of the booklet…

    TABLE OF CONTENTS

    3 Gynecologic cancer overview

    5 Gynecologic cancer symptoms

    6 Questions to ask your doctor

    7 Cervical cancer

    10 Ovarian cancer

    14 Uterine cancer

    16 Vaginal cancer

    18 Vulvar cancer

    19 Gynecologic cancer diagnosis

    20 Glossary

     21 Resources…”

    ___________________________________________ 

    2.      https://medlineplus.gov/ovariancancer.html

    [My note:  Just decided to copy the page because it seems every topic is covered.  Place your cursor on any topic and that link will come up and provide more info.  The “basics” are a good place to begin.  Loretta]

    “Ovarian Cancer

         

    On this page - Basics

    §  Summary

    §  Start Here

    §  Symptoms

    §  Diagnosis and Tests

    §  Prevention and Risk Factors

    §  Treatments and Therapies

    Learn More

    §  Living With

    §  Related Issues

    §  Specifics

    §  Genetics

    See, Play and Learn

    §  Images

    §  Videos and Tutorials

    Research

    §  Statistics and Research

    §  Clinical Trials

    §  Journal Articles

    Resources

    §  Reference Desk

    §  Find an Expert

    For You

    §  Patient Handouts

    Summary

    The ovaries are part of the female reproductive system. They produce a woman's eggs and female hormones. Each ovary is about the size and shape of an almond.

    Cancer of the ovary is not common, but it causes more deaths than other female reproductive cancers. The sooner ovarian cancer is found and treated, the better your chance for recovery. But ovarian cancer is hard to detect early. Women with ovarian cancer may have no symptoms or just mild symptoms until the disease is in an advanced stage. Then it is hard to treat. Symptoms may include

    • A heavy feeling in the pelvis
    • Pain in the lower abdomen
    • Bleeding from the vagina
    • Weight gain or loss
    • Abnormal periods
    • Unexplained back pain that gets worse
    • Gas, nausea, vomiting, or loss of appetite

    To diagnose ovarian cancer, doctors do one or more tests. They include a physical exam, a pelvic exam, lab tests, ultrasound, or a biopsy. Treatment is usually surgery followed by chemotherapy.

    NIH: National Cancer Institute

    Start Here

    Symptoms

    Diagnosis and Tests

    Prevention and Risk Factors

    Treatments and Therapies

    Living With

    Related Issues

    Specifics

    Genetics

    Images

    Videos and Tutorials

    Statistics and Research

    Clinical Trials

    Journal ArticlesReferences and abstracts from MEDLINE/PubMed (National Library of Medicine)

    Reference Desk

    Find an Expert

    Patient Handouts

    _____________________________End of references______________________

  • SpiderLady
    SpiderLady Member Posts: 3
    #4
    Thank you very much.

    Thank you so much for the information. I am scheduled for an ultrasound on the 20th. But my obgyn doesn't think it's that serious or important. I am sure he will change his mind after he gets my results. He keeps saying that I am to young. All of my Aunt's were diagnosed with cancer were younger than I am now. I have been pushing him to do something to help me. But I have just been met with things like you're depressed. Well yes I am I guess. But only because I have been extremely ill and nothing I have been able to do has helped. That and the doctor's don't take any of my concern seriously. I am very sure that I am seen as a hypochondriac. I have been so nauseous over the last year that at times has become unbearable. If anyone has a natural solution for nausea to get me through in the meantime it would be greatly appreciated. My insurance doesn't pay for very much Zofran a month. At this point I am sick and tired of being sick and tired. I almost don't care what the ultrasound finds. As long as they tell me something. You can't fight something if you don't know for sure what you are fighting. I really do appreciate all of the good information. I have a lot of reading to do. I will let everyone know how things turn out with the ultrasound. The ultrasound is the only test he is willing to do at this point. I have always gotten my yearly check-ups because of my family history. But it doesn't seem to have been any help at all. Even with telling them my family history. Also yes I am with you when it comes to punching Eve the face haha. I have thought about that a time or two myself.

  • SpiderLady
    SpiderLady Member Posts: 3
    #5
    The mass

    Now that I have gotten an ultrasound. It shows that the mass is on the back side of my uterus and not on my ovary thank God. The report says more testing is needed to determined what it is. I was also just diagnosed with systemic lupus erythematosus. I need to get a second opinion on the mass. My rheumatologist put me on medication to treat the lupus. She requested that my OB look at the results of the ultrasound before I start the medication. He told me my ultrasound came back negative and it's fine to start the medication. But I can read. The ultrasound report said I need a saline infusion sonohysterography to look at the mass better. So I am waiting on a referral to a different OBGYN. That's where I am as of right now. I know that the outcome is better for cancer of the uterus versus ovarian cancer. I have had both types of cancer in my family. Thanks for all of your help. 

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #6
    OK Spiderlady~a mini-tutorial 4U re sonohysterography :)

    Hello again “Spiderlady” 

    Just wondering—how did you come to call yourself “spider lady”?  I detest spiders and first shriek in horror when I see one, Surprised and then run for some kind of spray that will kill them, if I can’t “stomp” on it immediately. 

    Now on to the important subject of my reply.  Of course, I had never heard the term “sonohysterogram” or “sonohysterography” so I had to do some homework.  Now I’ve learned something else new.  Even though you have a history of both Uterine and Ovarian cancer in your family, please try not to “go there yet!”  We surely hope it is something “less” than cancer.   Uterine cancer is only one of several possibilities.  I’ve found several reputable references that explain in detail what will take place, and I am happy to share them with you.  Thanks for keeping us updated. You'll know everything you need to know by reading the info below.  Smile

    Loretta

    ____________________________________________________ 

    1.     https://www.radiologyinfo.org/en/info.cfm?pg=hysterosono

    “Sonohysterography

    Hysterosonography, also called sonohysterography, uses sound waves to produce pictures of the inside of a woman’s uterus and help diagnose unexplained vaginal bleeding. Hysterosonography is performed very much like a gynecologic exam and involves the insertion of the transducer into the vagina after you empty your bladder. Using a small tube inserted into the vagina, your doctor will inject a small amount of sterile saline into the cavity of the uterus and study the lining of the uterus using the ultrasound transducer. Ultrasound does not use ionizing radiation, has no known harmful effects, and provides a clear picture of soft tissues that don’t show up well on x-ray images.

    It is best to perform hysterosonography one week after menstruation to avoid the risk of infection. Little or no special preparation is required for this procedure. Inform your doctor if there’s a possibility you are pregnant. Leave jewelry at home and wear loose, comfortable clothing. You may be asked to wear a gown.

    2.     What is Sonohysterography (Ultrasound of the Uterus)?

     3.     What are some common uses of the procedure?

     4.     How should I prepare?

     5.     What does the equipment look like?

     6.     How does the procedure work?

    7.     How is the procedure performed?

     8.     What will I experience during and after the procedure?

     9.     Who interprets the results and how do I get them?

     10.                       What are the benefits vs. risks?

     11.                        What are the limitations of Sonohysterography?...”

    What is Sonohysterography (Ultrasound of the Uterus)?

    Ultrasound is safe and painless, and produces pictures of the inside of the body using sound waves. Ultrasound imaging, also called ultrasound scanning or sonography, involves the use of a small transducer (probe) and ultrasound gel placed directly on the skin. High-frequency sound waves are transmitted from the probe through the gel into the body. The transducer collects the sounds that bounce back and a computer then uses those sound waves to create an image. Ultrasound examinations do not use ionizing radiation (as used in x-rays), thus there is no radiation exposure to the patient. Because ultrasound images are captured in real-time, they can show the structure and movement of the body's internal organs, as well as blood flowing through blood vessels.

    Ultrasound imaging is a noninvasive medical test that helps physicians diagnose and treat medical conditions.

    Sonohysterography, also known as saline infusion sonography, is a special, minimally invasive ultrasound technique. It provides pictures of the inside of a woman's uterus.

    A Doppler ultrasound study may be part of a sonohysterography examination.

    Doppler ultrasound is a special ultrasound technique that evaluates blood as it flows through a blood vessel...”

    ________________________________________________________

    2.     https://www.acog.org/-/media/For-Patients/faq175.pdf?dmc=1&ts=20170907T1741208771

    This is an explanation of what takes place when a sonohysterography is performed.  It is from “The American College of Obstetricians and Gynecologists”

    “…WHAT IS SONOHYSTEROGRAPHY? 

    Sonohysterography is a special kind of ultrasound exam.  Fluid is put into the uterus through the cervix using a thin plastic tube.  Sound waves are then used to create images of the lining of the uterus.  The fluid helps show more detail than when ultrasound is used alone.  This test can be done in your obstetrician-gynecologist’s (ob-gyn) office, a hospital, or a clinic.  It usually takes less than 30 minute.

    FOR WHAT REASONS IS A SONOHYSTEROGRAPHY PERFORMED?

    Sonohysterography can find the underlying cause of many problems, including abnormal uterine bleeding, infertility, and repeated miscarriage.  It is able to detect the following:

    • Abnormal growths inside the uterus, such as fibroids or polyps, and information about their size and depth
    • Scar tissue inside the uterus
    • Abnormal uterine shape
    • Problems with the lining of the uterus
    • Whether the fallopian tubes are open or blocked…”

    ________________________________________________________ 

    3.   https://www.hopkinsmedicine.org/healthlibrary/test_procedures/gynecology/sonohysterography_135,371

    Sonohysterography

    “What is sonohysterography?

    Sonohysterography is a procedure to look at the inside of the uterus. It’s a safe, painless test that uses sound waves and a computer to create images. It does not use radiation.

    The uterus (womb) is the organ where a baby grows during pregnancy. The bottom of the uterus is called the cervix. This is the opening into the uterus. The cervix sits at the top of the vagina.

    During sonohysterography, you’ll be awake and lying down with your knees bent. A slim wand called an ultrasound transducer is placed in your vagina. This wand is covered with a disposable sheath and coated with a special gel.

    Your healthcare provider will then insert a thin, flexible tube (catheter) into your cervix. A salty fluid called saline is sent through the catheter into your uterus. At the same time, the transducer sends high-frequency sound waves through the gel and into your body. The echoes from these sound waves can create a real-time image of the inside of your uterus. This can show the structure of your uterus. The saline fluid helps the ultrasound form an image with sharper detail. Your healthcare provider can use this information to diagnose a number of different health conditions.

    In some cases, the procedure may be done without saline. For example, it wouldn’t be used during pregnancy.

    Doppler ultrasound may be used at the same time, with the same transducer. This can give information about how blood is flowing through the vessels in your uterus.

    Why might I need sonohysterography?

    Healthcare providers use sonohysterography to help diagnose a number of medical conditions, including:

    • Uterine fibroids
    • Uterine polyps
    • Scarring inside your uterus
    • Abnormal shape of the uterus
    • Uterine cancer

    Your healthcare provider might advise this test if you have symptoms that suggest a problem with your uterus, such as:

    • Abnormal menstrual bleeding
    • Infertility
    • Repeated miscarriages
    • An abnormal pelvic exam

    You might need this test if a standard ultrasound test doesn’t show enough information to diagnose a problem.

    Sonohysterography has some benefits over other tests used to get information about the uterus. Other tests include:

    • Hysterosalpingography. This is a type of X-ray that uses radiation.
    • Hysteroscopy. This is a surgical procedure that needs to be done with anesthesia.
    • MRI. This is an imaging test done with large magnets and a computer. An MRI may not give as clear a picture of the inside of the uterus…”
    • _____________________________________________________________ 

     4.    https://www.youtube.com/watch?v=7uSHwuk1VLE

    Sonohysterography Usual and Unusual Findings

     This is a professional lecture series by Dr. Oksana H. Baltarowich, M.D. and is 41 minutes in length.  It will probably be everything you need to know before you ever schedule this procedure. 

    _______________End of references______________ 

     

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