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A new info source?

seatown's picture
seatown
Posts: 242
Joined: Sep 2012

This week I happened across what I thought was a valuable reference: NCCN Guidelines for Patients/Ovarian Cancer. The National Comprehensive Cancer Network is comprised of leading cancer research & clinical hospitals in the US: MD Anderson in Houston, Fred Hutchinson in Seattle, City of Hope in LA, Dana-Farber in Boston, Memorial Sloan-Kettering in NYC, & 16 more. They publish patient guidelines for many types of cancer. Tho this one is titled "Ovarian Cancer," they include frequent references to PPC & explain how the treatment for it is basically the same as for ovarian cancer. The 92-page PDF doc is very detailed & seems to answer almost any question I've had. Lots of info about different drugs, different treatment protocols, etc. Here it is:

http://www.nccn.com/files/cancer-guidelines/ovarian/index.html

If this doesn't work for you, go to NCCN.com, click on "ovarian cancer," then click on "patient guidelines"

But: if everybody but me already knew about this guide--never mind.

In my own world: got the CA 125 number for the blood drawn last week. It's down again, down to 100.6 from 149 in October. I hope when I go back for my next-to-last chemo in early Dec., the blood drawn today will show my CA 125 number is down to 2 digits. A big change from the 2,700+ upon diagnosis in July!

More of my own story at www.CaringBridge.org/visit/CaroleSeaton/journal

Nflinchum
Posts: 74
Joined: Jun 2012

Thank you so much for the info and the website. I went to MD Anderson for my second opinion. Awesome cancer center.
Great to hear your CA 125 numbers are down. I hope that continues for you.
I will read your story. My story is on CaringBridge as well under Nadine Flinchum.

seatown's picture
seatown
Posts: 242
Joined: Sep 2012

Thanks for your comments. I was interested to read your story on Caring Bridge & to see your photos. I didn't think anyone's stomach could be more swollen from ascites than mine -- but yours was! Luckily for me, the ascites really declined as soon as I got started on chemotherapy.

I was especially interested to read about your 2nd opinion from MD Anderson. I know that many cancer patients & others with serious illnesses seek a 2nd opinion. I never did with my PPC diagnosis, which sort of gradually emerged after a week or 2 of almost daily ever-expanding reports from several doctors. Then when the initial diagnosis was confirmed, the oncologist said he thought I should start chemo ASAP. I knew from past general cancer discussions with doctor friends that speedy treatment was generally advised. But if you don't mind my asking -- did you feel a 2nd opinion was necessary? I assume that now you're glad you did it. I've often wondered if anything would be different for me if I had sought a 2nd opinion. But since my treatment seems to be going so well, producing good results, & I've had minimal side effects, it's just sort of a passing thought. I'm just interested in another patient's opinion.

Hoping for constant improvement for you! And thanks again.

Nflinchum
Posts: 74
Joined: Jun 2012

Hi Seatown I haven't had a chance to read your story yet. I hope to do so this weekend. My reason for second opinion was because first my pathology report in the hospital diagnosed me as having ovarian cancer. Then when I went for my 1 week check up to get staples out the full pathology was saying that it orginated in the uterus so then the diagnose was uterine cancer. My doctor was a firm believe in clinical trials. My sister and my boss plus another one of my co-workers really wanted me to go for second opinion. One of my co-workers had cancer and he went to MD Anderson. Spoke very highly of it. I was skeptical for my Dr. wanted me to start Chemo right away also as in 3 weeks after my surgery. I didn't like the idea of postponing it for it took me a couple of weeks to get everything worked to go to MD Anderson. Good thing I did for my Dr. was shocked that it was PPC and ordered my tissue to be sent off for testing to find out for sure. It came back as high PPC.I am glad I did so for my Dr. wanted to treat me with Chemo and radiation and MD Anderson didn't recommend radiation at all.
Praying for you. Thanks for responding.

seatown's picture
seatown
Posts: 242
Joined: Sep 2012

Thanks so much for explaining about how you came to seek a 2nd opinion. Every patient has such an interesting, different story, it seems. Ovarian cancer was originally mentioned in my diagnosis last summer too, based on what the radiologist saw on the CT scan & passed along to other docs. When I reminded them all that I didn't have ovaries--they were removed in a hysterectomy 4 yrs ago--they said, "Oh, yeah, OK, what now?" Anyway, that's all behind me & my treatment seems to be working. Best wishes to you.

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