Mother has possible ovca

[TLC3299]

My mom has been having pelvic pain and weight loss since Aug. just recently had a ct scan and there is a mass on ovary. She has a CA125 of over 4000! It took them over 2 weeks to get her an appt with oncologist. She is going Friday @ 9.
What can she expect and does the high CA125 mean the cancer is worse?
Very worried as she is in FL & I'm in CT.
Thank you

[TLC3299]

Mom saw oncologist today. They are doing hysterectomy and exploratory surgery on Thursday. Dr said the tumor is small and they just need to see how far it has spread but is concerned with fluid she saw in lungs. :( also said something about removing peritoneum (sp)??? Mom wasn't sure what it was. I'm hoping to fly down for surgery.
Thoughts?

[HVAC]

Any questions I can answer let me know. You can Private Message me to if you need to, as well. This stuff is scary when you are new to it. I had a friend who had Cancer and was a nurse who helped me. I was a mess and there is a whole new vocabulary. If someone can go with her and take notes it helps. My friend the nurse did that for me. I did not have anyone go to the first meeting with the Oncologist. That was a big mistake. I was expecting what he said but was floored when they said I had to have surgery. I left his office and sat in the hospital and was in shock.

Alex

[TLC3299]

You sound like you have an amazing attitude! Her Drs in FL are very laid back & she just wants answers. I'm hoping to get her to come to Boston for a 2nd opinion. I want her to get the best care she can. I'm hoping for the best, but hard when she's so far away and no one to support her down in FL. My father is 70 & not in the best health himself. Thank you for all your help! I really appreciate all the info & will pass it on to her.

[HVAC]

The not knowing and waiting is the hardest part. The recovery from the surgery was not as bad as I thought. The gas pain was the worst part of the surgery.The key is to wlak it out. It takes hours of walking.

The chemo was harder on me because I stopped eating all together and got too thin. If I had understood that I needed to eat no matter what it would have been better. I am getting through my second chemo better because I am eating.

Ovarian Cancer is now considered a chronic illness. The treatment used to be worse and it was more deadly. They have made great advancements in the last 5 years. There are all kinds of scary stuff to read about Ovarian Cancer. Most of it has not happened to me.

People are not statistics. The statistics on this cancer are out dated. I have a deadly form and I am not only alive but pretty well. I can still walk my 85 pound dog.

If she is in pain make sure she gets good pain management. Cancer doctors usually are not good at symptom management. Oncologist kill cancer and that is about it. I have a good pain specialist.

Likewise with nutrition I had to go to a nutritionist. My Cancer Hospital did have a good one. The first Cancer Hospital I went to let me starve to death. I got thinner and thinner and sicker and sicker and they just did not care.

If at anytime you feel she is not getting the care you want you can change. If I had it to do over I would have gotten a second opinion at another hospital at the begining. I like my second hospital so much better. My first hospital did things differently. You never saw a doctor and Nurse Practioner handled everything. That would have been okay accept I was dying and she told me I was fine. I needed nutritional support, blood, and fluids. I got all three immediately at the second hospital.

I also hated the chemo facilities at the first hospital. The second hospital has chemo suites so you have privacy at the first hospital we were all in a small room with no privacy. Some people would like that I felt clausterphobic and I did not like having to talk to other patients while I have chemo.

I now know what all three local hospitals treatment set ups are like. I am at the one I like the best. The drawback to where I am is you wait a lot but its a beautiful Cancer Center with cafeteria and coffee shop. The people treating me are really great. I have a nurse who I can call anytime with a concern. I see the doctor every visit.

I wish I did not have cancer but it is not as bad as I thought it would be.

Alex

[TLC3299]

Great to hear! She is very scared and hates the waiting and not knowing. Glad you are doing so well!

[HVAC]

I know you are scared. A high CA 125 does not mean anything in regards to the cancer being worse. It is individual to each woman.I know this is hard but you have to see what the doctor says. I could make guesses but I might be wrong. I had advanced Cancer so I had surgery and then chemo. It was not fun but I got through it step by step. I am doing well two years out.

Alex