Why won't anyone TELL ME!!!

[MagneticDave]

My mom was diagnosed with stage 3 ovarian cancer almost 4 years ago.  After numerous chemo treatments that were keeping it under control, she is becoming less responsive.  Her CA-125 count is now more than 61,000, having been 14,000 about 2 months ago.

I KNOW there MUST be studies charting CA-125 levels verses survival time, but I can't find any on my web searches, or on the major cancer sites.  WHY WON'T ANYONE TELL ME?  Her life expectancy at this point CAN NOT be "long term remission".  I am trying to prepare for what to expect, but how can I do that when no one seems willing to address what are her chances.  

I am not looking for what WILL happen, but I think I deserve to know what the PROBABILITY of her living for the next few months or year.

Why is this information so hard to find???

[Annekathryn Goodman, M.D.]

Dear Dave,
I think my wise friends have answered your questions as best as anyone can.

It sounds like you are in tremendous pain. You express what everyone feels: the agony over the uncertainty and yet the absolute knowledge that your mother will die from her cancer. You ask when?
Maybe this year or next year.

It may be helpful for you to meet with someone who can help you cope with this awful , horrifying loss that you are facing.
I am keeping you in my heart

[nyc lady]

What numbers are you looking for,  I volunteer for a natioanl Ovarian Cancer awareness organization and a slide within our presentation    shows the "stage distribution and survival" rates as follows:

Stage 1  24 percent   > 90 percent survival

Stage 2  6 percent       70 to 80 percent survival

Stage 3  55 percent     20 to 30 percent survival

Stage 4  15 percent    < 5 percent

Like SimplyStar says concentrate on survival rates....at all stages of this disease there are women that have beat it...there is a woman in our group that is over 20 years stage 3B....another woman stage 3C stable for 7 years and a couple of other stage 3C reaching the 5 year mark.  

There is no test or doctor that can predict the furture and put a timeline on anyone's life.  There are many different chemos out there and they work, even if it is to keep the disease stable for an extended period of time.  On the other hand, we also know how horrible this disease is....when do you know that it is time to put quality in front of quantity....that's a persoanl choice and a no one knows when and if they will make that choice.  

Everyone's CA125's react differently.....a number that constantly rises would suggest that chemo isn't working....so it does make sense that a high number would be related to death, but,  for some women, a high number might be in the 100s and for someone else it is in the 10,000s and others  CA125s that are never effected.

It's not easy right now, and I can understand your anger.  The wonderful Dr Goodman can explain this all to you medically....if you want some help and sport from those going thru this, other friends and family, please visit the patient to patient forum

[SimplyStar]

Why don't you try to focus on survival rates rather then death rates.  Try also to think about quaility of life rahter than quanity. None of know when we are going to die and to ask someone to figure out a graph for you to look at is impossible. The ladies on this forum are fighting to live , not waiting to die. If you were my son  I would be very upset that you are " prepareing for me to die". If she is losing this battle, then make those times with her  amount for something.  No Mother ever wants her child to hurt,  so get over this and make both of your days brighter , by being a positive person around her. Don't say "poor me" all the time, it is her that needs your kind and caring support.

[Casey06]

Hello David,

I can understand your frustation and it shows how much you truly care for your mother.
Vent all you want, that is what the forum is for.

I think the reality is that the CA-125 does not always correlate to the amount of disease and response to treatment, despite many studies. There are some statistics, but not of enough confidence value to be truly predictive.

I am sure you have googled til you are blue in the face about it and have already read these links:

http://holtzreport.com/SHNCA125.html
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1525-1438.1993.03050285.x
http://www.baymoon.com/~gyncancer/library/blqa18ca125.htm
http://ovariancancer.jhmi.edu/prognosis.cfm#ca125

You are right about OC not getting enough funding, but that is probably because of the numbers involved (25,000 new diagnosis a year, compared to 185,000 for breast cancer and colon cancer).

It doesn't make it right, especially since the survival rate is so low.
More awareness is needed and less acceptance of the status quo.

Keep fighting for your mom and asking these questions.

[MagneticDave]

Thank you for your comments.  I appreciate your information, but I am still not buying it.

My mom's initial diagnosis was stage 3 Ovarian cancer.  They removed numerous cysts (all cancerous) and over 2 litters of fluid.  Since then, she has had chemo 4 times, with less and less remission time in between.  The 3rd chemo produced only minor drop in her CA 125 level, the 4th actually had NO effect and her CA 125 went up.

Her current chemo (5th) has just started as she had to have radiation therapy to treat a brain tumor.  She will have her follow up scan for that in a couple of weeks.

This is such a prevalent disease, I KNOW there MUST be statistics that plot the relative survival chances of Ovarian Cancer patients.  WHY is this information SO hard to find?  

I hear people touched by Ovarian Cancer talk about how little attention this disease gets, in comparison to say, breast cancer, which has a very high survival rate.

IT IS NO WONDER THIS IS THE CASE!  No one seems to want to talk about how much, how often, or how quickly this disease kills its victems.  It is time to STOP "keeping a positive attitude and a stiff upper lip" and REALLY bring this information to the public.  This disease will NEVER get the funding or attention it deserves until the people involved, and especially the professionals, start being open and honest with the public.

I AM FRUSTRATED TO THE POINT OF WANTING TO SCREAM

Thank you for letting me vent.
  - - -  David

[rootietootie]

I think that noone may say anything, because the simple truth is that they don't know.  No one knows for sure.  Many women live a very long time with high CA 125 levels.   Some women die with their levels low.  They simply don't say because they don't know.  The CA 125 in itself is not an indicator of "time left"

[ginahmk]

I understand your frustration with this.  Like ajay777 , her life expectancy may depend on what organs are involved...lung, liver, etc and if their function is or is expected to be compromised.  The CA125 level alone may not be enough,.  I have also heard that some chemo regimens can actually increase the CA125 when they start taking effect.  Corner her doctors, you have a right to know what is going on with mom.

[ajay777]

what was her initial diagnosis , organs affected can you please give some details abt her initial diagnosis?