If you knew 20 years ago???

AHelstrup
AHelstrup Member Posts: 22
in Ovarian Cancer #1

My gram was diagnosed with multiple cancers.  One being ovarian.  Which from what I understand that cancer is very dangerous and has the highest death rate due to how quickly it grows and the lack of accurate testing.  With that my mom is most likely going to have her ovaries, tubes and uterus removed now as she is already post-menopausal and does not need them.  We shared the same OBGYN for many years.   OB said that it is very different decision for me as I am in my early 30’s. I still need my ovaries for hormones otherwise I will be on HRT for a long time. Which I am sure is a whole nother problem.  But watching my gram decline and eventually die is devastating.  I could not imagine my family going through that.  And I guess Ovarian cancers can pop up at any point.  Unlike other cancers (ie breast) they say start to do testing 5-10 years before it showed up in the family.   

With all that I am trying to decided if I should do the surgery now and deal with what goes along with it knowing that my chances are greatly lower.  I have 1 child and my husband had a vasectomy so there are not any children in our future.

What would you do?

Comments

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #2
    Hard choice

    I would do the same. This cancer is very cruel and has no symptoms..But first....get a blood test called Ca-125. And maybe genetic testing first. I wish you the best of luck.    Val

     

  • AHelstrup
    AHelstrup Member Posts: 22
    #3
    poopergirl14052 said:

    Hard choice

    I would do the same. This cancer is very cruel and has no symptoms..But first....get a blood test called Ca-125. And maybe genetic testing first. I wish you the best of luck.    Val

     

    We will.  However OB said

    We will.  However OB said that often woemen will get the CA test and come back negative and then 6 months later they are in stage 4!  Said itis a bad bad bad cancer...

  • JoanC
    JoanC Member Posts: 231
    #4
    20 yrs ago

    I would have everything removed if I knew about this 20 yrs ago. I would take any precautions to avoid having ovrian cancer. It is an ugly cruel diease.

  • Alexandra
    Alexandra Member Posts: 1,308
    #5
    My 2 cents

    Very sorry about your grandmother and everything your family is going through. It is scary and heartbreaking to see a loved one suffer and decline. 

    Yes, ovarian cancer has no screening test, it is largely discovered in stages 3C and 4, after it had metastasized and it is a terminal disease with low survival rate and poor prognosis (I apologize to everyone on this board who does not want to hear that).

    But... it is a rare disease. Both you and your mom need to take a step back and think about it rationally.

    Prophylactic removal of a healthy female reproductive system is a big deal whether you're of child-bearing age or not; it only makes sense if ovarian or breast cancer in your family is hereditary. Only 10% of OVCA is hereditary. Doing it simply out of fear makes as much sense as male castration to prevent testicular cancer.

    If at all possible contact genetic counsellor and get your grandma genetic testing for BRCA1/2. I realize that she is in bad shape, but it's a simple blood test and I think she would be happy to do it for you. If her test comes back positive, get your mom tested. Even IF your grandma is BRCA positive (which is a big question mark) your mom has 50% and you have 25% risk of being BRCA positive. For example: I am BRCA1 positive, I have a gene mutation responsible for my ovarian cancer. My daughter is BRCA1 negative because she inherited this gene from her father and she has the same risk as general population which is very low.

    You mentioned that your grandma was also diagnosed with anal and esophageal cancers. Some anal cancers are caused by HPV virus. Gardasil vaccination prevents HPV.

    Good luck and best wishes

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #6
    Different perspective

    I have learned so much about this disease and about what causes it that my view may be a bit different.  My naturopath has taught me about the malfunctions in the body that lead to cancer.  Many of these are a result of lifestyle choices.  Diet is a huge factor as to whether someone, even someone who is predisposed to cancer, will develop the disease, or not.  Exercise and stress management are also issues.  I've also learned how critical it is to properly care for my body in order to prevent various issues.  It's my understanding that by removing your ovaries, you may avoid ovarian cancer, but you may end up with peritoneal cancer instead.  The long and the short of it, from what I have learned, is to take a holistic approach and take care of your whole body.  Cancer cannot grow in a healthy body.

  • AHelstrup
    AHelstrup Member Posts: 22
    #7
    Alexandra said:

    My 2 cents

    Very sorry about your grandmother and everything your family is going through. It is scary and heartbreaking to see a loved one suffer and decline. 

    Yes, ovarian cancer has no screening test, it is largely discovered in stages 3C and 4, after it had metastasized and it is a terminal disease with low survival rate and poor prognosis (I apologize to everyone on this board who does not want to hear that).

    But... it is a rare disease. Both you and your mom need to take a step back and think about it rationally.

    Prophylactic removal of a healthy female reproductive system is a big deal whether you're of child-bearing age or not; it only makes sense if ovarian or breast cancer in your family is hereditary. Only 10% of OVCA is hereditary. Doing it simply out of fear makes as much sense as male castration to prevent testicular cancer.

    If at all possible contact genetic counsellor and get your grandma genetic testing for BRCA1/2. I realize that she is in bad shape, but it's a simple blood test and I think she would be happy to do it for you. If her test comes back positive, get your mom tested. Even IF your grandma is BRCA positive (which is a big question mark) your mom has 50% and you have 25% risk of being BRCA positive. For example: I am BRCA1 positive, I have a gene mutation responsible for my ovarian cancer. My daughter is BRCA1 negative because she inherited this gene from her father and she has the same risk as general population which is very low.

    You mentioned that your grandma was also diagnosed with anal and esophageal cancers. Some anal cancers are caused by HPV virus. Gardasil vaccination prevents HPV.

    Good luck and best wishes

    Thank you.  Yes we are at the

    Thank you.  Yes we are at the beginning stages of all this. Research, tests, counceling will all happen.  Just seeing what others that are going thorugh it would do if they knew they had a chance.  Would they rather remove the chance or take the chance (even if small).  Just looking at everything.  It is a lot to wrap our arms arond. 

    The HPV virus can cause cancer however the vaccine only protects against 2-3 types of cancer and those types are very very very rare.  It is about 1 in 100,000 that can get that cancer.  And, personally, I would never ever get the Gardasil vaccine. The damage it has done to so many.  It is a horrible vaccine that has been fast tracked to people and now so many lives have been effected by the vaccine that does not help protect people from cancer. 

  • AHelstrup
    AHelstrup Member Posts: 22
    #8
    Tethys41 said:

    Different perspective

    I have learned so much about this disease and about what causes it that my view may be a bit different.  My naturopath has taught me about the malfunctions in the body that lead to cancer.  Many of these are a result of lifestyle choices.  Diet is a huge factor as to whether someone, even someone who is predisposed to cancer, will develop the disease, or not.  Exercise and stress management are also issues.  I've also learned how critical it is to properly care for my body in order to prevent various issues.  It's my understanding that by removing your ovaries, you may avoid ovarian cancer, but you may end up with peritoneal cancer instead.  The long and the short of it, from what I have learned, is to take a holistic approach and take care of your whole body.  Cancer cannot grow in a healthy body.

    I agree.  A healthy body is

    I agree.  A healthy body is important. 

     

    Never heard of Peritoneal caner.  Need to look that up now also! 

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