• An answer to another question about me.

    Asked by Nonnie917 on Tuesday, May 21, 2013

    An answer to another question about me.

    Nomadicme asked in answer to a questionI had, what risks I have. I don't know what risks I have. The gyn suggested a complete hysterectomy to prevent any further cancer because once you have had breast cancer your chances of ovarian cancer are 67% higher. So she is sending me to a genetic counselor to see if he/she can get Group Health to pay for the BARBA 1 &b 2 test to see where I stand with the breast cancer gene. If I have it then its a complete hysterectomy. I would rather be safe than sorry I guess. One bout of this stuff is enough, but to have another bout is scary. I have already had a BL mastectomy because an MRI showed 2 clusters in the left breast that the mammo didn't pick up. They were not cancerous I found out which was good. Doctor said I made the right decision in having a BL mastectomy and I had the stomach fat used to make new breasts which wasn't enough to make complete breasts so I am having implants put in. My last surgery will be 6-24. I am excited.

    15 Answers from the Community

    15 answers
    • SueRae1's Avatar
      SueRae1

      I think it is great that you are going for genetic counseling and hopefully getting tested for BRCA1 & BRCA2. As far as I know, only if you have these mutations are you at greater risk for getting ovarian cancer, otherwise breast cancer does not increase the risk of ovarian or other cancers.

      over 4 years ago
    • SueRae1's Avatar
      SueRae1

      One last thing, get a 2nd opinion about the hysterectomy from a breast and/or ovarian cancer specialist. As i said before the statistic you gyn quoted just doesn't sound right. Once you have the results of the BRCA test you can make a more informed decision. What does your Breast surgeon say?

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      Congratulations on getting nice breasts put in. I had the BRCA testing done out of fear for breast/ovarian. A low percentage of the population is positive for that gene, meaning the cause for most breast cancer is not known.

      I wasn't aware of any higher chance of getting ANY type of cancer because you've had breast cancer. Where did you get that information? I believe we have the same chances of getting ovarian cancer as the rest of the population (unless you have other risk factors, and I'm not aware that having breast cancer is one of them).

      over 4 years ago
    • SandiD's Avatar
      SandiD

      Take a look at www.breastcancer.org. It is my go to site. You really need to educate yourself to make the best decisions for yourself! Good luck to you.

      over 4 years ago
    • paulasbabo's Avatar
      paulasbabo

      I had the genetic and my insurance paid, it's the way it's worded, as long as it's deemed medically necessary insurance will pay. I actually receive a letter saying they would not pay and about two weeks later my doctor called me and said I was positive for the BRCA 1 gene. I had a hysterectomy almost immediately, within months. I waited almost two years to have the mastectomies and ended up having breast cancer. It is important to be tested and to have the surgery. We need programs that will test all women and pay for the necessary surgeries.

      over 4 years ago
    • jad's Avatar
      jad

      My insurance covered the genetic testing for the BRCA1 and BRCA2 genes because I was diagnosed with cancer. Previous to the diagnosis they did not cover.

      Should you test positive for those genes, it is important that your children be tested. In my case my childrens' insurance would cover because of my diagnosis.

      Don't leave your SONS out of this. They, too, can transmit those genes and are at risk. Your grandchildren, too.

      over 4 years ago
    • Nonnie917's Avatar
      Nonnie917

      I found out about the 67% higher risk when I was doing research on the internet when I found out I had cancer. She just confirmed that the chances are higher. I got that information from the ACS website. I do plan on talking to my oncologist about this. Our little town doesn't have specialists in that field. In fact, our little town no longer has a plastic surgeon for breast implants. He went back to his practice in Everett and to the Providence Hospital where I will be getting my surgery. Our hospital wouldn't pay him his price. Small town living, what can I say? :-)

      over 4 years ago
    • Nonnie917's Avatar
      Nonnie917

      Like I told SueRae, I found this information doing research on the internet and I believe it was from the ACS site. Our family has a history of colon cancer so I am at risk there too, if I carry the gene. So I plan on talking to my oncologist to get everything cleared up. I live in a small town and we don't have the specialists that big cities do. In fact, my plastic surgeon left to go back to his practice in Everett and Providence Hospital. Our hospital wouldn't pay him his price so now we don't even have a PS. I have to go to Everett for my implants and it's a 45 min drive with good traffic.

      over 4 years ago
    • Nonnie917's Avatar
      Nonnie917

      Thank you Paulasbabo, Sandi D, and jad. All your answers were good and helpful. Thank you for the website that I can go do some more research on. I appreciate all the help I have received from all of you. It gives me hope especially about the BARCA test.

      over 4 years ago
    • virginiab's Avatar
      virginiab (Best Answer!)

      It can be extremely useful in looking at statistical likelihood of some outcome (such as ovarian cancer) to find the actual percentage of people who get the cancer, with and without having breast cancer. If you are 67% more likely to get it, that does not mean that you have 67 out of 100 chances to get it. It just means that you are a bit more likely to get it than others are. So if (and I'm just making up a number here) 3 out of a thousand women might get ovarian cancer in their lifetimes, that 67% would mean that your risk would be 5 out of a thousand instead of 3.

      So the real question is: 67% higher than WHAT?

      over 4 years ago
    • Nonnie917's Avatar
      Nonnie917

      If I can get the BARCA test I know it will help my daughter and granddaughters. They are already watching one of my daughter's breast because of calcium deposit. That is how mine started out. So she is being sent for genetic counseling as well. Hopefully they will do the BARCA test on her. I am afraid for her for so many reasons so I pray. They are back to monitoring it once a year which I think is too risky and should be checked at least twice a year. But she is a military spouse and military medical care isn't the best. So I pray.

      over 4 years ago
    • Blepta's Avatar
      Blepta

      Another wonderful resource for genetic cancer information is www.facingourrisk.org. I have the BRCA1 mutation and I chose to have surgery to reduce my risk of cancer. We had a very strong family history, with many female relatives diagnosed with breast and/or ovarian cancer in their 30s 40s and 50s, as well as men with pancreatic cancer. If you have a difficult time getting your insurance to pay for it, and you have a strong family history, I encourage you to be persistent for the sake of your younger relatives. It will make their journey much less of a struggle.

      over 4 years ago
    • Nonnie917's Avatar
      Nonnie917

      SueRae1. Maybe I should make an appointment with my oncologist and ask her what my chances are of getting ovarian cancer. It's scary to even think that it could happen, but if I am able to get the BARCA testing done and found out I am positive I will probably go ahead with the hysterectomy anyway. I think I would feel safer that way. I don't want to find out when it's too late to do anything about it. So the oncologist is the answer.

      over 4 years ago
    • Nonnie917's Avatar
      Nonnie917

      paulasbabo I agree with you 100%. There needs to be more done for women's health care. These insurance companies would rather you die than pay out the money necessary to help you stay healthy. It seems to me that paying out $3000 for BARCA testing vs. having to pay for cancer treatments and surgery would be a lot cheaper for the insurance companies. But they don't want to pay anything out if they can help it. I have to get pre approval before I can have anything done and my GP doctor has to make the referral request. I mean what a waste of time and money to have to see your GP just to get a request put through for some special treatment or testing. But insurance companies (I believe) control this country by lining the pockets of the lobbyists who line the pockets of the politicians. Big money talks when it comes to our government passing anything that will help the people who voted them into office. As long as they can have their great medical care and full retirement benefits and full pay at retirement they don't care about us poor peons. Okay, I'll get off my soap box now.

      over 4 years ago
    • Nonnie917's Avatar
      Nonnie917

      Well my insurance company denied my BARCA testing just as I thought they would. Guess they figure if I die from cancer then they have one less person they have to pay medical bills on. Makes me so angry. I have had cancer and they denied me. A bunch of uncaring idiots at Group Health and to think I have to keep them as my insurance coverage. Makes me angry. Doctor is going to try one more way to get the testing done and if that is denied then I have to go through the entire appeal process which could take months because they are so slow in responding. I think they do it on purpose in the hopes that you will give up the fight. Not me. They are going to have a fight on their hands with me. I don't give up that easily. Has anyone else had that problem with their insurance company denying them for any cancer related testing?

      over 4 years ago

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