PRIMARY PERITONEAL CANCER

blondecat said:

cancer cancer...
Gerris surgery lasted an hour longer than predicted. Even though she had a clean colonoscopy last month, cancer was detected on the outside of her colon. 12 inches of her small intestine and 6 inches of her large intestine were removed and stitched back together. Her remaining left ovary was cancer coated and removed. Her omentum was removed as was 2.5 liters of fluid. The tumor was also removed. Doctors said they removed all large masses of cancer. Pattysoo, what do you mean by ate carefully? Did you altar your diet in any way? Did your cancer metastisize to other organs? Colon? Has anybody else had part of their colon removed? Thanks for any answers..

blondecat said:

cancer cancer...
Gerris surgery lasted an hour longer than predicted. Even though she had a clean colonoscopy last month, cancer was detected on the outside of her colon. 12 inches of her small intestine and 6 inches of her large intestine were removed and stitched back together. Her remaining left ovary was cancer coated and removed. Her omentum was removed as was 2.5 liters of fluid. The tumor was also removed. Doctors said they removed all large masses of cancer. Pattysoo, what do you mean by ate carefully? Did you altar your diet in any way? Did your cancer metastisize to other organs? Colon? Has anybody else had part of their colon removed? Thanks for any answers..

Daniel76 said:

Peritoneal Cancer
Hello,

I am from Germany so please forgive me for mistakes in language and terminology.
My mom got diagnosed with Peritoneal Cancer that originated in Ovarian Cancer.
The ovaries were taken out, as well as the bigger knots of the cancer but it spread everywhere so there is no way to remove it all. We have looked into the HIPEC therapy but were told that she doesn't qualify for it because part of her small intestines had been effected. She has done systemic chemotherapy which she reacted to well. The cancer disappeared but everyone knew it was going to come back. She had a laparoscopy done that confirmed that the cancer cells - though too small to be spotted on an ultra-sound - were still there and indeed growing back.
We are told this will take approximately 9 months, then they'll try systemic chemotherapy again. This loop is to be repeated until the chemotherapy doesn't work anymore, at which point my mother will die.

We have talked to a couple of specialists in Germany that all told us this was all that could be done.
Reading entries on this forum I am reading about different medications patients in similar situations are taking in the US. My mom hasn't been prescribed nor been educated on any medication. So I thought I'd check in what ways Peritoneal Cancer is handled differently in the US from how it is approached in Germany.
Does anybody have a list on which medication is commonly prescribed for that kind of cancer over here? What specifics of her condition should I found out about and get translated (e.g. stages - I wouldn't know what 'stage' her cancer is in)? What research should I do? Is there a way for me to talk to a US doctor on behalf of my mother (I live in Los Angeles but I don't have health insurance)?

Any help would be really, really appreciated!

Thank you very much for your time!

Daniel

rhondanna said:

primary peritoneal cancer
I had a good experience getting a second opinion at Mayo Clinic a few years ago, but recommend M.D. Anderson in Houston - they confirmed my doctor's treatment of me with Tamoxifen and said that 10% of women are "low-grade" meaning the tumors are slower growing, that traditional chemo does not work, that if you have estrogen receptors in your tissues hormonal agents seem to be working. I have been stable on Tamoxifen for a year. If that stops working there are other hormonal agents. I was diagnosed Stage 4 in January 2006.

Tina Brown said:

Yes me
I have PPC stage 4 that has mets to the lining of my lungs. I live in the UK and surgery is not an option for me because my cancer cells are too tiny to even consider any kind of surgery. I was diagnosed Nov 09 and had chemotherapy only. Carboplatin / taxol. 6 infusions every 3 weeks. My CA125 was 1119 and came right down to 34 while I was on this chemo. I had 7 months remission before it unfortunately reared its ugly head. But my oncologist has put me back on carb/taxol as we know it works for me. I have resigned myself to live my life on chemo as it is my hope of keeping this disease stable.

I have had both lungs drained of the fluid accululation which gives me a good quality of life. I too am aware of the "text book" prognosis but we are not TEXT BOOKS ............... we are people who will defy the odds and will out live the TEXT book odds.

Chemo is a good way of keeping our disease stable and as long as you can tolerate it grab it with both hands and enjoy your life.

Much love Tina xx

EllaSofia said:

primary peritoneal carcinoma
I was diagnosed with primary peritoneal carcinoma, stage IIIC in Oct 2009. Finally diagnosed after seeing three doctors. Transvaginal ultrasound didn't pick it up, only an abdominal CT and CA-215. Debulking surgery and 6 rounds of taxol and carboplatin followeed by 1 year of maintenance on taxol. First CT after completing maintenance showed new places not seen on earlier CTs. Because the new places were near the liver I was referred to a different surgeon and he said he didn't see tumor and said I could wait 2-3 months and re-scan or if I was really worried he would do surgery then. I decided to wait b/c I wanted some time without chemo or surgery to do things, get healthy and visit with family. I re-scanned recently and the area had grown. I am seeing surgeon tomorrow and will schedule more surgery. I would be interested in any information on any trials for this particular type of cancer.

Best Friend said:

There are people here.
Hi- Everyone here has helped me very much. They do mark my mom's Stage 4 PPC as ovarian. I never heard of it before. She had ultrasounds, cat scans, colonoscopies. They found it very late after going in after they couldn't get through on her colonoscopy or barium enema. I am furios that they sent her for soooo many tests. By the time they found it over a year later, u wonder if they could have caught it a little earlier, it would be more promising. She didn't have her debulking first. She's supposed to have her three chemos, than surgery.
All i want to say is, I looked on the internet on this type of cancer until i couldn't bring myself to do it any longer. I think i have become so educated i could be the oncologist's nurse. But, until I came here I thought she was definitely going to die. I know this cancer is very fatal. But so many woman have come on here and showed me that all the statistics i have studied are not going to help my mom get into remission. Yes, she may get it back shortly after, but coming here i know not only that she can keep going but all of these women have taught me that it IS possible. When i am sad, crying,watching my mom get smaller, and weaker with no hair, i want to cry but i come here and read and hope to help someone else feel a little bit better.
Good Luck to you. I think going through this makes us realize how important the little things are that you do from day to day.

dooder0420 said:

Your diagnosis
Hi Lyla,
I just found this page when I was searching for recurrent primary peritoneal on google. I hope you have seen the GYN/ONC by this time. I am a 3+year survivor, dx with stage 3C PPC when I was 46. I was optimally debulked and then completed 2 rounds of carbo/taxol IV then 8 rounds of taxol/cisplatin IP(intra peritoneal)chemo. I have the best GYN/ONC down here in San Antonio that use the IP treatment on me when other docs were pooh poohing it. There are several of my other chemo buddies that were also treated with the same protocal and they are still in remission also. There is certain criteria for getting IP treatment and several things have changed with treatments since I was diagnosed. Please make sure that you are proactive in your search for information about this disease, not just from the doctor but get second opinions and a third if needed. I did so just to make sure I was receiving the best treatment. Please let us know how you are doing. Take care, Dee