Scared of Future Diagnosis and Test Results

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Karen82
Karen82 Member Posts: 41
in Ovarian Cancer #1

I have not posted on here since my mother died of ovarian cancer.  I never thought to ask her if she wanted genetically tested for it since she had ovarian cancer.  I have had a total hysterectomy and kept both ovaries because of my age.  I really let the doctor decide, but I was not thinking that my GYN forgot that my mom died of ovarian cancer. On one of my post op check-ups (surgery recently done), I asked him if I could be genetically tested for ovarian cancer by BRCA1 and BRCA2.  He agreed that would be a good idea.  I think he may have been annoyed considering I was not screened before the surgery. On another forum, someone said that it is not a true negative unless my mother was tested and her's came back negative. While this may be true, I still have genes on my dad's side that may indicate a positive or a negative.  My mother also has a twin sister but they are not identical. Would her test take place over my mother's for me to get a true negative?

I found out later on that if I had the test done before the surgery and if the genetic test came back positive, then my GYN would have taken my ovaries even though I am in my early 30's. I don't like taking pills and rarely finish my medicine off when prescribed. I was told that I can't be without hormones for another health issue I have, but I was reading that estrogen can increase your chances of ovarian cancer as well. 

My GYN's office did not have me to fill out the paper for the yearly pap smear that would have screened me for cancer because I went in sometimes every week, two weeks, or every four weeks.  Very seldom did my visits get any more stretched out than that.  I did not even know when my yearly was to ask for the paper to screen me.  I also need to ask to see if I need to start a mammogram because of my family history.  I kept ovarian cysts before my surgery.  I have had 1 or 2 to rupture that missed every major blood supply to my body.  Most of the time my ovarian cysts would get 6cm to 8cm and go away with time by themselves. I never had more than one at a time. There were other medical reasons why I had the hysterectomy.  I had a close scare with cervical cancer, but that result was negative. 

On My Mother's side:  Mom died of ovarian cancer, her dad (my grandpa) died of liver cancer, my 1st cousin has had liver issues and got colon cancer, 1st cousin had scare with breast cancer, my mom's cousin died of ovarian cancer also, and breast cancer runs in one of my ancestorial lines.

On My Father's Side:  My great aunt had breast cancer first and survived then colon cancer twice and did not survive, her brother (my great uncle) died of colon cancer. 

I will never know if my dad would have gotten any cancer because he died back in 1988.  Any other close relation is yet to remain seen.  I know that ovarian, breast, and colon cancer seem to be grouped together. 

These are just the people in my family that I know of for a fact.  After watching what my mother went through and being there for her every step of the way, ovarian cancer scares the living daylights out of me. I always took comfort since my doctor kept a close eye on me all the time. Now that I had a total hysterectomy, I will not go to him like I did anymore. I am scared what the genetic test results will show and scared that I will suffer like my mom with ovarian cancer.  I also know enough that there are no accurate test to diagnose ovarian cancer and I won't know till it is too late. My mom did not have not even one risk factor for ovarian cancer.  In fact, her risk was lowered so she had no chance to get it, but it still got her.  I guess I am just scared of the unknown, but with very good reason.  I wish I could put this fear of mine at ease.  Thanks.

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  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
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    Karen:So sorry you are

    Karen:

    So sorry you are feeling scared and I can see why.    Also, you ask for what you want to be done.   Don't think you offend a physician because you asked.  If he/she is offended, then find another physician.

    Further, originally I didn't get genetically tested when I had my hysterectomy.   They didn't know I had cancer until after the pathology came back.   That was in 2005.   I have had several physicians after due to retirement, leaving, and I wasn't happy with them.   My new physician asked if I was ever genetically tested because I had endometrial adenocarcinoma at age 45, which is unusual.  Since my grandfather (on my mother's side) had colon cancer, I was genetically tested for Lynch syndrom.    This is sort of a marker for colon and other types of cancers.   I don't know how they did it but this was 2014 and they got my slides from my original hospital from my original diagnosis back in 2005 to have it tested.   

    You will need to see a genetic counsellor.   They will authorize the tests probably both Lynch and BRCA testing and others that they feel necessary.  In the meantime, make a family history list.  They will ask for this.   List all of your immediate family and list any diseases and/or illnesses that they have or had.   I think it follows Parents, Siblings, Aunts, Uncles, Grandparents.  And because you have a history of breast cancer, I am sure that they will authorize several genetic testings.   However, look at your insurance company and see what they will allow.

    With regard to PAP smears, my one doctor took one every time I went to him - like every 4-6 months.   My new doctor doesn't do any.   I felt uncomfortable so he did one.   He didn't get mad because I asked.  But given your history, you probably should.   Please note that it usually takes at least 10 years for sometime to develope for cervical cancer.   

    Have they done a CA-125 blood test?   This is usually done for cervical cancer.   However, for some this is not a  marker.   My CA-125 was always within normal limits.  Go to your PCP and ask to have your blood work done and ask for this test as well as for Vitamin D.   

    My best to you.

    Kathy

  • Karen82
    Karen82 Member Posts: 41
    #3
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    Kaleena said:

    Karen:So sorry you are

    Karen:

    So sorry you are feeling scared and I can see why.    Also, you ask for what you want to be done.   Don't think you offend a physician because you asked.  If he/she is offended, then find another physician.

    Further, originally I didn't get genetically tested when I had my hysterectomy.   They didn't know I had cancer until after the pathology came back.   That was in 2005.   I have had several physicians after due to retirement, leaving, and I wasn't happy with them.   My new physician asked if I was ever genetically tested because I had endometrial adenocarcinoma at age 45, which is unusual.  Since my grandfather (on my mother's side) had colon cancer, I was genetically tested for Lynch syndrom.    This is sort of a marker for colon and other types of cancers.   I don't know how they did it but this was 2014 and they got my slides from my original hospital from my original diagnosis back in 2005 to have it tested.   

    You will need to see a genetic counsellor.   They will authorize the tests probably both Lynch and BRCA testing and others that they feel necessary.  In the meantime, make a family history list.  They will ask for this.   List all of your immediate family and list any diseases and/or illnesses that they have or had.   I think it follows Parents, Siblings, Aunts, Uncles, Grandparents.  And because you have a history of breast cancer, I am sure that they will authorize several genetic testings.   However, look at your insurance company and see what they will allow.

    With regard to PAP smears, my one doctor took one every time I went to him - like every 4-6 months.   My new doctor doesn't do any.   I felt uncomfortable so he did one.   He didn't get mad because I asked.  But given your history, you probably should.   Please note that it usually takes at least 10 years for sometime to develope for cervical cancer.   

    Have they done a CA-125 blood test?   This is usually done for cervical cancer.   However, for some this is not a  marker.   My CA-125 was always within normal limits.  Go to your PCP and ask to have your blood work done and ask for this test as well as for Vitamin D.   

    My best to you.

    Kathy

    Feeling Better
    Thanks, Kathy.  I have way too much time on my hands. LOL.  I don't think my GYN was aggravated at me personally, but more of a disbelief that somehow this detail was completely left out before he had done my hysterectomy that could possibly lead to another surgery or to ovarian cancer because he just wanted to make me better completely with no more worries than the average public.  I no longer have my tubes, uterus, or my cervix.  The only parts that I have left is my ovaries and vagina.  That is another reason why I am scared I will get the diagnosis of ovarian cancer when it is too late to do something about it and how am I going to catch it if there is no reason to go to a GYN for me now.  I am waiting to get my results back for the BRCA 1 and BRCA 2.  I know that only 10% of ovarian cancer is genetically inherited.  My calcium, vitamin D, and hormone levels will always be checked due to my rare genetic condition that I was born with.  I have a doctor in Baltimore, MD who will stay on top of that as long as he remains my doctor.  I don't really have a PCP at this time.  I am trying to get re-established, but I think I would better benefit from a doctor than a nurse practitioner.  Not saying a nurse practitioner is not good, but I have something you just see in a textbook and not in real life.  Doctors do not know that much about it, let alone a nurse practitioner. When I do go to my PCP to get re-established, I can ask her if she can refer me to a genetic counselor.  I never had a CA-125 blood test.  I do know my mother's oncologist checked her's all the time.  I just wish there was a way to accurately diagnose it and the symptoms was not so vague.  My mom is the strongest woman I know for all of her battles and she managed to keep her head held high. Take care.

     

    Karen Smile

     

    PS.  I have had some medical training, so I have to be one of the worst patients to deal with because I come up with more things to ask then 100 people do.  I am too curious about things that doctors will not explain to me because either they think I don't understand or not enough time to explain it to me. LOL.

     

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #4
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    Karen82 said:

    Feeling Better

    Thanks, Kathy.  I have way too much time on my hands. LOL.  I don't think my GYN was aggravated at me personally, but more of a disbelief that somehow this detail was completely left out before he had done my hysterectomy that could possibly lead to another surgery or to ovarian cancer because he just wanted to make me better completely with no more worries than the average public.  I no longer have my tubes, uterus, or my cervix.  The only parts that I have left is my ovaries and vagina.  That is another reason why I am scared I will get the diagnosis of ovarian cancer when it is too late to do something about it and how am I going to catch it if there is no reason to go to a GYN for me now.  I am waiting to get my results back for the BRCA 1 and BRCA 2.  I know that only 10% of ovarian cancer is genetically inherited.  My calcium, vitamin D, and hormone levels will always be checked due to my rare genetic condition that I was born with.  I have a doctor in Baltimore, MD who will stay on top of that as long as he remains my doctor.  I don't really have a PCP at this time.  I am trying to get re-established, but I think I would better benefit from a doctor than a nurse practitioner.  Not saying a nurse practitioner is not good, but I have something you just see in a textbook and not in real life.  Doctors do not know that much about it, let alone a nurse practitioner. When I do go to my PCP to get re-established, I can ask her if she can refer me to a genetic counselor.  I never had a CA-125 blood test.  I do know my mother's oncologist checked her's all the time.  I just wish there was a way to accurately diagnose it and the symptoms was not so vague.  My mom is the strongest woman I know for all of her battles and she managed to keep her head held high. Take care.

     

    Karen Smile

     

    PS.  I have had some medical training, so I have to be one of the worst patients to deal with because I come up with more things to ask then 100 people do.  I am too curious about things that doctors will not explain to me because either they think I don't understand or not enough time to explain it to me. LOL.

     

    why do you think you don't

    why do you think you don't need a gyn?   I had my uterus, cervic, tubes, ovaries, appendix, omentum taken out and I still get checked.  Of course it is with my gyne/onc but if I didn't need them I still would have with my gyne.   And I still got PAP smears.   You should be able to ask your gyn too for a referral to a genetisis.  

    I know what you mean about nurse practitioners.  Most of the time they are fine.  But when I was having symptoms, all she said to me is that what I was experiencing was not a symptom of a recurrence.   What?    Finally when I had my doctors appointment he said if I ever had that symptom again to go to ER and get an x-ray (I thought I was having partial bowel obstruction).

    Othertimes, they just shrug off symptoms.  I tell them all the time I am not the "normal" symptom person.   The opposite.  They tell me they are sure I don't have something, but I do.

    Hang in there!

    Kathy

  • Karen82
    Karen82 Member Posts: 41
    #5
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    Kaleena said:

    why do you think you don't

    why do you think you don't need a gyn?   I had my uterus, cervic, tubes, ovaries, appendix, omentum taken out and I still get checked.  Of course it is with my gyne/onc but if I didn't need them I still would have with my gyne.   And I still got PAP smears.   You should be able to ask your gyn too for a referral to a genetisis.  

    I know what you mean about nurse practitioners.  Most of the time they are fine.  But when I was having symptoms, all she said to me is that what I was experiencing was not a symptom of a recurrence.   What?    Finally when I had my doctors appointment he said if I ever had that symptom again to go to ER and get an x-ray (I thought I was having partial bowel obstruction).

    Othertimes, they just shrug off symptoms.  I tell them all the time I am not the "normal" symptom person.   The opposite.  They tell me they are sure I don't have something, but I do.

    Hang in there!

    Kathy

    I phrased that wrong.  I will

    I phrased that wrong.  I will not get checked as often with GYN as I used to.  I do not have a GYN/ONC as I have never been diagnosed with cancer to my knowledge unless the fibroid tumor I had was cancer and they never told me. Right now, I am trying to avoid the need for an oncologist.  I thought the pap smears are if you have a cervix which I don't.  I guess I stand corrected on the subject.  If the nurse pratitioner does not listen to me, I do have a way around her to get what I do need when it is concerning menopause when I go through it and my rare condition.  On that I see a doctor in Baltimore, MD for that who from what I hear is the best in the country. I just really need someone to send my medical records to and treat me for something like colds and I am good as long as I keep my other two doctors.  Other than that, I really don't need a PCP.  I will try to hang in there.  You do the same.  Thanks again. 

     

    Karen

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