New OC NON-Screening Guidelines abandon women

http://www.cnn.com/2012/04/13/health/ovarian-cancer-test-brawley/index.html

I have been thinking about the results of the Ovarian Cancer Screening guidelines for several days.  Today I am finally going to share my gut feelings about this.  Although I respect the medical community and their research, I believe that at the end of the day, this is a total abandonment of women and will kill many.

The truth is that the only reliable way to detect the early stages of ovarian cancer is via an expensive PET scan or other equally complex scanning.  A CT scan is not reliable.  A blood test is not reliable. A transvaginal ultrasound is not reliable.  A bi-manual pelvic exam is not reliable.  BUT...any screening is better than no screening!

How do I know that PET scan is reliable?  My brilliant amazing gyn-oncologist spotted a suspicious situation with a tumor on my liver via a CT scan and ordered a PET scan.  The PET scan ironically revealed that the liver tumor was not active, but there were THREE other active tumors, breathing, living, ready to mature into larger tumors at some point in the future.  It is a miracle that my recurrence was caught in the early stages.

My CA125 was only 15.  I had no unusual symptoms other than increased fatigue.  My constant abdominal pain is not anymore a symptom because it is constant.

My stand is this:  Either we allow all women, and I mean ALL women, the opportunity to receive a PET scan if there are any subtle signs of ovarian cancer, (not just the big 4, but weird abdominal pain, low back pain, unusual bleeding, increased fatigue)  and make it affordable............

OR

We declare that all ovarian cancer is a chronic condition so that we can apply for benefits to live what is left of our lives in dignity.

We can only apply for a limited number of benefits while in active treatment (corrected comment).  When we are declared NED, we cannot apply for new benefits, but we can keep benefits we have.  The problem is that this disease does make us less able to work full time and the medical expenses are ridiculous.

I am so grateful to have this time now, even in a recurrence and being on chemo.  BUT, I am not really living the life that I'd like.  I also want to add that I am not saying that I have no control over my future or anything like that, but it is very difficult to be a cancer patient, find work and keep it.  So, yes we do need to reach inside and find our entrepreneurial spirit.........and I am on a mission of raising awareness.  But if this is really true, that the recommendation is that there be no real active screening, than it is almost a certainty that all ovarian cancer diagnosis will be advanced.

There is this false belief that people with cancer somehow find a way to live their last years checking off the items on their bucket list.  Well that is great, but it takes money.

I had to go back to work before I could do some of the travelling that I wanted to do.  Now all I can do is just do all I can to keep my little part time job so that I can keep my apartment and car and do little things.  I am not starving, and am getting by, thank God!  But, really?  Is this it?  The rest of my life is going to be spent paying bills to get chemo to live to pay bills to get chemo to live to pay bills.

The extra money (like thousands of dollars and free time) to travel, just be next to a dolphin once, take a month and travel, see a broadway show, take my mom on a short cruise, yada yada yada.....well I'll pry have to write my novel and make the money to do that because what I'm doing now won't cut it.

My point is that if the CA125 had been given to me at the time the oncologist in California denied it, I could have been detected at an earlier stage.  Thusly I would have not had as complicated of a surgery and maybe not needed chemo.  That would in turn have created a body that would be better able to work a higher paying job that could have created a better lifestyle with more flexibility.  I didn't even get a CT scan of my pelvis when I had glaring symptoms!

At the end of the day, the new guidelines say not to screen for ovarian cancer. The result is that insurance companies can now deny payment for legitimate screening tests and women will only be diagnosed with advanced ovarian cancer.

I am not being negative, I am saying we need to fight for what we know works!  It will be decades before a blood test is proven reliable.

A PET scan does work and we need them to be readily available and affordable.  That's it, that's the only solution we have that will work until scientists come up with a blood test or something less complex.

PET scans do have some risks, but really it's minor compared to death.

That's where I stand.