May have ovarian cancer, amazed by the wonderful women here

KatieAK
KatieAK Member Posts: 3
edited March 2014 in Ovarian Cancer #1
Hi my name is Katie and I recently had a CT scan that found what the doctor called a "suspicious mass," an enlarged uterus, and swollen inguinal lymph nodes. He is concerned that it is ovarian cancer. I have also had persistent lower abdominal pain, bloating, weight loss, and a variety of other symptoms over the past year, including constant exhaustion. I have a couple of questions that I hope are not too redundant. I am 25 years old and I have no health insurance or primary care doctor. I am wondering what I should have done to know for sure whether or not I have ovarian cancer. Also, has anyone here experienced these symptoms, or know anything about what it means to have an enlarged uterus and a "suspicious mass"?

In an effort to find some answers I have read through many of the posts on this site. In addition to feeling reassured that there are others who have been through this, I found myself in tears in response to the amazing strength, courage and hope of the women here. Regardless of what I may be diagnosed with in the future, I just wanted say that I will be thinking of all of you and praying for the best.

Your strength and kindness is admirable and inspiring. Thank you all so much!
Katie

Comments

  • jtotten1
    jtotten1 Member Posts: 21
    #2
    Don't Join Our Club!
    Katie - I sincerely hope that you never get to be a member of our club, but if you ever do, know that there is an unfortunately large group of women here who whare your fears and concerns.

    Ask your Doctor for a CA-125 blood test. It should run about $35 if you have to pay out of pocket. This is not the world's best blood test, as there are many false negatives and false positives, but it is used to measure an anitbody that is present in Ovarian Cancer. Your doctor should be able to take care of this for you.

    In the meantime, try not to be too freaked out. You're awfully young to have ovarian cancer, and when caught early enough, it is treatable and curable.

    Keep us posted on your findings!
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    I hope you fail to have this diagnosis
    Dear Katie, I was diagnosed with Stage IV after having the same symtoms with a CT scan. The scan showed numerous 2.5 cm tumors, including three in my liver all over the abdomen. They then ordered a CA-125 which was 2999 (normal being under 35). I had faithfully seen my gynocologist every year for exam and PAP smear and was due for my annual when diagnosed by a gastroenterologist with the CT. For me the CT scan was the diagnosing tool. I did not have an enlarged uterus or one suspicious mass. I did have bloating, abdominal pain, weight loss, and lots of gas. You should have a gynocologist/oncologist read the CT scan as they are experienced in reading them for ovarian cancer, as well as uterine, etc. Should you be scheduled for surgery, the best outcome would come from a gyn/onc surgeon at a large teaching hospital. Statistics show this. What does the doctor that called this a "suspicious mass" say to do next?
    Saundra
  • KatieAK
    KatieAK Member Posts: 3
    #4
    saundra said:

    I hope you fail to have this diagnosis
    Dear Katie, I was diagnosed with Stage IV after having the same symtoms with a CT scan. The scan showed numerous 2.5 cm tumors, including three in my liver all over the abdomen. They then ordered a CA-125 which was 2999 (normal being under 35). I had faithfully seen my gynocologist every year for exam and PAP smear and was due for my annual when diagnosed by a gastroenterologist with the CT. For me the CT scan was the diagnosing tool. I did not have an enlarged uterus or one suspicious mass. I did have bloating, abdominal pain, weight loss, and lots of gas. You should have a gynocologist/oncologist read the CT scan as they are experienced in reading them for ovarian cancer, as well as uterine, etc. Should you be scheduled for surgery, the best outcome would come from a gyn/onc surgeon at a large teaching hospital. Statistics show this. What does the doctor that called this a "suspicious mass" say to do next?
    Saundra

    Thank you for your thoughtful replies!
    The doctor who ordered it referred me to a gynocologist, but for some reason I haven't heard anything back yet. He thought I should have biopsies. It seems to me though that if it's what's causing the pain I should have it out whether it's cancer or not. Unfortunately, there's no gyn/oncologist in my area, though there are several within 2 hours drive. I'm trying to see if I can get some emergency health coverage from the state. I have tried to get insurance several times in the last year, but have been told I wouldn't be covered due to a pre-existing condition (funny that they consider symptoms with no diagnosis to be an exclusionary "condition"). I am a graduate student and even the student health insurance wont do any good. Thus far the burden has fallen on my mom and extra student loans. I don't want to put anymore strain on her if I can help it. It's unfortunate that people get cut off from their parents insurance at 24 even if they're still in school. I've been experiencing symptoms for the last year, so it's already been a long journey to get this far, and I had to beg for the CT scan. I've been tested for many possible conditions and everything has been negative, so it seems that surgery will be required for diagnosis.

    I think the weight loss was the strangest thing. I thought I had gained weight because my belly has been so bloated, but when I checked I had lost 9lbs in about 3 weeks with no change in diet or exercise. It was really surprising, especially since my weight has only varied by one or two lbs over the last 10 years.

    I wish I had known to get more specifics about this "suspicious mass" while at the doctor, who knows what that means. I had a TVU 9 months ago that showed a cyst on the same ovary. The doctor I saw then never even suggested that I have it checked, so I wonder if it's the same thing that has grown or changed. I think the CA 125 test is a good idea, even if it will just possibly point in one direction or another. I also have felt generally unwell, and I've had a feeling for months that there is something seriously wrong. I hadn't even thought of ovarian cancer as a possibility since I had been told it primarily affected women out of my age group. It seems that that is not always the case. I wonder how often early diagnosis is missed on the basis of that assumption.

    I am doing my best not to worry. It seems rather unproductive, and I am definitely experiencing more than enough fear to stay motivated to find the problem.

    Thank you again! Coming to this site and your thoughtful replies has made me feel better about whatever the future may hold. Talking with my family about the possibility has not been productive as it just seems to scare them more than it does me.

    Best wishes and much love,
    Katie
  • steferis
    steferis Member Posts: 3
    #5
    KatieAK said:

    Thank you for your thoughtful replies!
    The doctor who ordered it referred me to a gynocologist, but for some reason I haven't heard anything back yet. He thought I should have biopsies. It seems to me though that if it's what's causing the pain I should have it out whether it's cancer or not. Unfortunately, there's no gyn/oncologist in my area, though there are several within 2 hours drive. I'm trying to see if I can get some emergency health coverage from the state. I have tried to get insurance several times in the last year, but have been told I wouldn't be covered due to a pre-existing condition (funny that they consider symptoms with no diagnosis to be an exclusionary "condition"). I am a graduate student and even the student health insurance wont do any good. Thus far the burden has fallen on my mom and extra student loans. I don't want to put anymore strain on her if I can help it. It's unfortunate that people get cut off from their parents insurance at 24 even if they're still in school. I've been experiencing symptoms for the last year, so it's already been a long journey to get this far, and I had to beg for the CT scan. I've been tested for many possible conditions and everything has been negative, so it seems that surgery will be required for diagnosis.

    I think the weight loss was the strangest thing. I thought I had gained weight because my belly has been so bloated, but when I checked I had lost 9lbs in about 3 weeks with no change in diet or exercise. It was really surprising, especially since my weight has only varied by one or two lbs over the last 10 years.

    I wish I had known to get more specifics about this "suspicious mass" while at the doctor, who knows what that means. I had a TVU 9 months ago that showed a cyst on the same ovary. The doctor I saw then never even suggested that I have it checked, so I wonder if it's the same thing that has grown or changed. I think the CA 125 test is a good idea, even if it will just possibly point in one direction or another. I also have felt generally unwell, and I've had a feeling for months that there is something seriously wrong. I hadn't even thought of ovarian cancer as a possibility since I had been told it primarily affected women out of my age group. It seems that that is not always the case. I wonder how often early diagnosis is missed on the basis of that assumption.

    I am doing my best not to worry. It seems rather unproductive, and I am definitely experiencing more than enough fear to stay motivated to find the problem.

    Thank you again! Coming to this site and your thoughtful replies has made me feel better about whatever the future may hold. Talking with my family about the possibility has not been productive as it just seems to scare them more than it does me.

    Best wishes and much love,
    Katie

    I was misdiagnosed 3 times
    I was misdiagnosed 3 times and my tumor finally ruptured. It probably saved my life. The CA125 does not work for everyone. Mine was 117 when the tumor ruptured. A transvaginal utlrasound is what you need now.
  • saundra
    saundra Member Posts: 1,370 Member
    #6
    steferis said:

    I was misdiagnosed 3 times
    I was misdiagnosed 3 times and my tumor finally ruptured. It probably saved my life. The CA125 does not work for everyone. Mine was 117 when the tumor ruptured. A transvaginal utlrasound is what you need now.

    Maybe not
    My ultrasound showed nothing because of the fluid in my abdomen, although the CT with contrast dye lit up like a Christmas Tree. So if she has had a CT, the ultra sound may not show any more. Saundra
  • KatieAK
    KatieAK Member Posts: 3
    #7
    saundra said:

    Maybe not
    My ultrasound showed nothing because of the fluid in my abdomen, although the CT with contrast dye lit up like a Christmas Tree. So if she has had a CT, the ultra sound may not show any more. Saundra

    Frustration
    Hi, thanks again for all of your help.

    I had a very frustrating experience this morning. The ob/gyn I was referred to is booked through January, so I saw her nurse practitioner this morning. I tried to ask about the CT report, but she already had it figured out that since I don't have insurance it must IBS, endometriosis, or interstitial cystitis. I couldn't get a word in about anything, and her possible diagnoses seemed to be entirely based upon my financial situation, though she had no problem charging me $100 to tell me this. This is exactly where I was with this a year ago, and I've tried all sorts of home remedies for the above conditions to no avail. I left the office in tears, as I feel like I've gotten nowhere, and none of my anxiety has been relieved.

    Has anyone else had an experience like this? Maybe I'm just venting. I looked at the CT report myself and it says "3cm complex cyst." Am I overly concerned about a "complex cyst"? Or should I push to have it checked out?

    Thank you so much! I'm sorry, I feel so whiny and annoying when all of you have so much to contend with!
    Katie
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    KatieAK said:

    Frustration
    Hi, thanks again for all of your help.

    I had a very frustrating experience this morning. The ob/gyn I was referred to is booked through January, so I saw her nurse practitioner this morning. I tried to ask about the CT report, but she already had it figured out that since I don't have insurance it must IBS, endometriosis, or interstitial cystitis. I couldn't get a word in about anything, and her possible diagnoses seemed to be entirely based upon my financial situation, though she had no problem charging me $100 to tell me this. This is exactly where I was with this a year ago, and I've tried all sorts of home remedies for the above conditions to no avail. I left the office in tears, as I feel like I've gotten nowhere, and none of my anxiety has been relieved.

    Has anyone else had an experience like this? Maybe I'm just venting. I looked at the CT report myself and it says "3cm complex cyst." Am I overly concerned about a "complex cyst"? Or should I push to have it checked out?

    Thank you so much! I'm sorry, I feel so whiny and annoying when all of you have so much to contend with!
    Katie

    Complex cyst
    Cysts on the ovary - of any type - are rarely malignant, according to everything I have read. (Carcinoma only present in 15 of 100,000 women according to wiki). Your age also makes ovarian cancer doubtful, though not impossible. However, doctors tend to take complex cysts more seriously than other types, and I completely understand why you are frustrated and concerned.

    In most states there are clinics that will treat low-income patients who do not have insurance. Would you fall in that catagory, or not? Secondly, has anyone done a CA125 test? They cost about $50.00 and though not completely conclusive, it would certainly be worth it, in my opinion.

    Considering your age and other data, if I were you, I would find someone to do the CA125 and if it's normal, I would breathe a lot easier.
  • Unknown
    Unknown
    #9
    KatieAK said:

    Thank you for your thoughtful replies!
    The doctor who ordered it referred me to a gynocologist, but for some reason I haven't heard anything back yet. He thought I should have biopsies. It seems to me though that if it's what's causing the pain I should have it out whether it's cancer or not. Unfortunately, there's no gyn/oncologist in my area, though there are several within 2 hours drive. I'm trying to see if I can get some emergency health coverage from the state. I have tried to get insurance several times in the last year, but have been told I wouldn't be covered due to a pre-existing condition (funny that they consider symptoms with no diagnosis to be an exclusionary "condition"). I am a graduate student and even the student health insurance wont do any good. Thus far the burden has fallen on my mom and extra student loans. I don't want to put anymore strain on her if I can help it. It's unfortunate that people get cut off from their parents insurance at 24 even if they're still in school. I've been experiencing symptoms for the last year, so it's already been a long journey to get this far, and I had to beg for the CT scan. I've been tested for many possible conditions and everything has been negative, so it seems that surgery will be required for diagnosis.

    I think the weight loss was the strangest thing. I thought I had gained weight because my belly has been so bloated, but when I checked I had lost 9lbs in about 3 weeks with no change in diet or exercise. It was really surprising, especially since my weight has only varied by one or two lbs over the last 10 years.

    I wish I had known to get more specifics about this "suspicious mass" while at the doctor, who knows what that means. I had a TVU 9 months ago that showed a cyst on the same ovary. The doctor I saw then never even suggested that I have it checked, so I wonder if it's the same thing that has grown or changed. I think the CA 125 test is a good idea, even if it will just possibly point in one direction or another. I also have felt generally unwell, and I've had a feeling for months that there is something seriously wrong. I hadn't even thought of ovarian cancer as a possibility since I had been told it primarily affected women out of my age group. It seems that that is not always the case. I wonder how often early diagnosis is missed on the basis of that assumption.

    I am doing my best not to worry. It seems rather unproductive, and I am definitely experiencing more than enough fear to stay motivated to find the problem.

    Thank you again! Coming to this site and your thoughtful replies has made me feel better about whatever the future may hold. Talking with my family about the possibility has not been productive as it just seems to scare them more than it does me.

    Best wishes and much love,
    Katie

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