Aa
Freshair
How was the Ovarian ca conference at NYU? I read the brochure and would have liked to be able to go.
about this brca thing
Like you I have a family tree with breast cancer sufferers on every branch so to speak. Our BRCA test shows a variation of uncertain significance - our family has it but they haven't seen it before (they were quite excited for a day or two that they had found it in another BC sufferer but she was my second cousin so they calmed down again). We were retested two years ago just in case something else had come to light. Basically due to not knowing the significance there is no interest in taking it any further. One thing that was stressed though was that they don't know of all the BRCA variations yet and there will be more that the two that they have identified.
It is really frustrating isn't it knowing that there has to be something there that is genetic but not being able to figure out what.
Like you I have a family tree with breast cancer sufferers on every branch so to speak. Our BRCA test shows a variation of uncertain significance - our family has it but they haven't seen it before (they were quite excited for a day or two that they had found it in another BC sufferer but she was my second cousin so they calmed down again). We were retested two years ago just in case something else had come to light. Basically due to not knowing the significance there is no interest in taking it any further. One thing that was stressed though was that they don't know of all the BRCA variations yet and there will be more that the two that they have identified.
It is really frustrating isn't it knowing that there has to be something there that is genetic but not being able to figure out what.
I am sure it is not routine. A study found this. I told my gyn/onc and he said yes when they see some inflammation they know that is a reason of your white blood cells attacking. He said this was probably a small study and that there are too many variables that go into survival. But we of course have to keep up our immune systems the best we can. It's difficult when you are doing the opposite taking chemo. So yes supplement with reishi, maitake, Vit C, etc and don't forget that exercise raises the immune system and reduces fatigue.
Man I hate this new format, accidentally hit the wrong key and poof my blank comment gets posted!!!!
Interesting about the white cells too...I look at my blood test results every 2 weeks and follow my white bloods cells closely, especially after reading about the natural interferon and your post on natural health products that inhibit angiogenesis
Interesting about the white cells too...I look at my blood test results every 2 weeks and follow my white bloods cells closely, especially after reading about the natural interferon and your post on natural health products that inhibit angiogenesis
That's awful that you got yourself in shape and then was diagnosed with this. Although I have heard that this cancer develops over many years. I don't think it is routinely tested as far as the white blood cells in the tumor. (After the tumor is removed)
I would guess they would do a white count on a needle biopsy from the actual tumor?? Or do they do them on the tumor when it is removed during surgery??? Interesting.
Interesting info especially on the exercise, I am going to look for the study. The year before I was diagnosed I started eating low fat and low calorie, lost 70 lbs and started walking 5 miles a day. I felt great, then came cancer and I kept it up, moving from outdoors to indoors. It really did make me feel better. I find that exercise has helped me lower my stress, that and during chemo, being too tired to care. Wonder how you know you have more white cells in your tumor - do they test routinely for it?
Thanks for the report, glad I stayed here in upstate NY
Thanks for the report, glad I stayed here in upstate NY
The conference was good. A lot I know of what is in the works is in clinical trials.
They started out with the history of ovarian cancer and the progress they've made with the platin drugs. Barbara Goff from Seattle spoke on screening. Dr. Cohen made an great statement that we should use with women on this forum. He said to say this to your doctor when having symptoms and pain and worried about ovarian cancer "Prove to me that I don't have ovarian cancer" He said that will get them thinking.
Someone from MD Anderson spoke on clinical trials. Then a doctor on quality of life with recurrent ovarian--exercise plays a big part along with eating well. QOL is better with moderate exercise. That reinforced me to get out walking more miles. And keep stress under control. Greater levels of distress were associated with higher circulating vascular endothelial growth factor (VEGF). Lower levels of VEGF with higher levels of social well-being. Having less stress has scientific data on a better immune system. So if you have stress, try to get a handle on it.
Also women with more immune system white blood cells in the tumor versus circulating outside did better. (a study)
We weren't allowed to ask questions but to write them down on index cards and then they were randomly answered during a panel discussion. Also learned the CA125 test is made with mouse antibody.
Then Dr. Cass spoke of genetics. I wanted my question answered but it wasn't. With my mother, grandmother and two sisters-- they all have/had breast cancer and I had the BRACA test and it came out negative. Then it was in the newspapers about false negatives that were coming out so I want to know if I should have the test again. I will ask my oncologist. Thinking about my daughter. Also there's a better prognosis (on ovarian) if you are BRACA positive-.
Overall it was a good day but I don't think worth flying in to attend.
They started out with the history of ovarian cancer and the progress they've made with the platin drugs. Barbara Goff from Seattle spoke on screening. Dr. Cohen made an great statement that we should use with women on this forum. He said to say this to your doctor when having symptoms and pain and worried about ovarian cancer "Prove to me that I don't have ovarian cancer" He said that will get them thinking.
Someone from MD Anderson spoke on clinical trials. Then a doctor on quality of life with recurrent ovarian--exercise plays a big part along with eating well. QOL is better with moderate exercise. That reinforced me to get out walking more miles. And keep stress under control. Greater levels of distress were associated with higher circulating vascular endothelial growth factor (VEGF). Lower levels of VEGF with higher levels of social well-being. Having less stress has scientific data on a better immune system. So if you have stress, try to get a handle on it.
Also women with more immune system white blood cells in the tumor versus circulating outside did better. (a study)
We weren't allowed to ask questions but to write them down on index cards and then they were randomly answered during a panel discussion. Also learned the CA125 test is made with mouse antibody.
Then Dr. Cass spoke of genetics. I wanted my question answered but it wasn't. With my mother, grandmother and two sisters-- they all have/had breast cancer and I had the BRACA test and it came out negative. Then it was in the newspapers about false negatives that were coming out so I want to know if I should have the test again. I will ask my oncologist. Thinking about my daughter. Also there's a better prognosis (on ovarian) if you are BRACA positive-.
Overall it was a good day but I don't think worth flying in to attend.
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