Looking for as much information as possible on Primary Peritoneal Cancer.
Hello, my husband has been diagnosed with retroperitoneal liposarcoma. This is a rare sarcoma that develops in the fatty tissue in the peritoneal area. (so they say)
At first, they thought it was a type of kidney cancer, they removed his kidney, and low and behold, pathology was confused. After 3 weeks of studies they determined it to be a liposarcoma.
We were referred to Sloan Kettering to meet with a sarcoma specialist there. Unfortunatly, they never got clear margins at his original surgery, so for the past 2 yrs the doctor at Sloan has been watching and observing this leftover part (another thing I cant understand) and we have just found out that it started to make its move. My husband will have surgery again on the 16th.
We have been told that this particular cancer has a high recurrence rate, and surgery is the only recourse as chemo does not have an effect on it. Radiation, too, is too dangerous to the vital organs in the area so that is out.
Information I obtained on my own by searching the internet is not very promising. Seems like its just "luck of the draw" as to who can overcome the circumstances. Needless to say, the more it comes back, the more surgeries, and the more damage to the body, etc. Not good.
Main thing is the best prognosis is to get it all the first time, which , unfortunately, was not the case with my husband. Therefore, outlook is disheartening.
I would like to hear more abour your experience so far, and what your doctors have told you.
Hi there... I'm seeking info. too, and will happily share what I've learned, as well as what our story is...I say our b/c it's my mom who has the diagnosis, but I'm the research hound in the family.
She's 68, never had children - I'm adopted. For about a month prior to Christmas 2009, she was feeling more and more bloated, and les hungry, more nauseated when she ate, and experiencing incontinence. Her regular doc didn't see how the incontinence was anything related to anything, but sent her for a cat scan the next day when she mentioned the other symptoms. That was Dec. 23. He immediately called an oncologist, who saw her on Dec. 24 2009 and confirmed an initial diagnosis of ovarian cancer, with ascites, and a tumor wrapped partially around her colon. As a result of the tumor wrapping around her colon, her onc. suggested 3 rounds of a carbo/taxol combo...systemic IV chemo (as opposed to intraperitoneal...where they put the drip right into your belly - I was pushing for this..). She had the ascites removed in early January, but there was only 3 oz. of fluid, and she looked 6-7 months pregnant...very uncharacteristic....so I suspecte that there was a lot of tumor there. Her ca-125 numbers went like this: 6000 (yes, 6 thousand!!!) at her initial diagnosis. 8,000 after her first round of chemo (1-21-2010) , 1054 after her second round of chemo (21 days later), 140 after round 3 (another 21 days later). Then, March 30, 2010, she had surgery, where she had a hysterectomy, discovering a double uterus...cause of her not getting pregnant. They also removed all of the cancer, which had shrunk, and did not require them to take any of her colon, or appendix...though they might have taken her spleen...and they did take large sections of omentum. This is where things start to get interesting. Though, on a very positive note, she is feeling terrific, and her ca-125 was just at 9.
In early April 2010...just recently, she got the pathology reports from her surgery, which stated that the:
"Adenocarcenoma endometriod type with widespread involvement of omental tissue...and pelvic wall, ovaries and fallopian tubes, surface of the uterus is high grade is high grade appears to have risen from old foci of endometriosis....greatest tumor burden in omentum and pelvic cavity, favoring primary peritoneal origin of the tumor." Several of her immunostains were positive, but I don't have those numbers yet.
Her onc. didn't make any large distinctions between primary peritoneal cancer and ovarian cancer, and didn't tell her she doesn't have ovarian cancer. In fact, she said, of the types of ovarian cancer, this is the one to have (whatever!), but has a nasty habit of coming back (uh..yeah....). I'm a little concerned, because I don't think my parents currently understand the full implication of the origin of the cancer being peritoneal and not ovarian....though they look almost the same.
I'd be interested in any info. you can find.
Again, the good news, is that she appears to be cancer-free - for the moment. She'll have 4-6 more chemo treatments. She has also felt quite good through the treatments...they've given her medication to offset the side-effects, so she's been tired, and has low immunity, so I haven't visited (I have 3 small children and all their germs!). She has lost her hair, but has a lovely wig.
Outside of the medical stuff, which is of course of great interest and concern, I can say that her journey thus far has been much easier than some I've read. If anything, there have been tremendous blessings for her in this:
-My family and I don't usually get to visit at Christmas, since I am in church work and usually have to work Christmas Eve....2009 I did not, and we made the trip to be with my folks....so we were all together for her diagnosis.
-Since being diagnosed, she has received letters, cards, emails and phone calls from family and friends literally around the globe and there are thousands of people that have prayed for her...again, around the globe. Talk about feeling loved?
-She has had greater connection with many of the people around her whose lives have been touched by cancer, and even though there's often a grim prognosis with ovarian or PPC, we are all grateful for the gift of time, to be able to cherish and make the most of....whether things continue to look positive and we have many years, or this thing rears it's ugly head as I've read it could, and we only have a couple.
I think sharing the info. and sharing the stories...sharing what docs are saying, lab tests, and increasing our own understanding can help us help one another. My prayers are with you on this journey, and I look forward to hearing more from you, and anyone else who has info. or experience to share.
Every day truly is a gift.
I have PPC & was diagnosed Nov 4th 2009. This is a rare cancer as you may well realise so trying to find info is not easy. You are right when you say it is in-curable but all of your mum's CA 125 results are really encouraging. I am so pleased they manged to remove the tumour/s in surgery.
My cancer is made up of small cancer cells all around the lining of my abdomen, so surgery was never an option. Also it had spread to the outer lining of my lungs so I am stage 4. The fluid build up around my lungs was bad for me, but I also has asistes in my stomach.
I have just finished 6 rounds of carbo/taxol infusions and my CA 125 has come down from 1119 to 65. I too lost all of my hair but am hoping it will come back now. So I have finished my chemo and I am waiting for a CT scan next month to see what's going on inside and I will have another CA 125 in June. The aim is for my CA 125 to remain stable and they will monitor me every 3 months. The word my oncologist used was "dormant" he would hope the cells remain dormant. If they don't then more chemo for me.
Take care and I hope your mum continues to improve.