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PRIMARY PERITONEAL CANCER

chicagocx
Posts: 1
Joined: Aug 2009

Hi,

I am 33 years old and was recently diagnosed with stage 4 primary peritoneal cancer. I am looking for others who are in the same boat. I am BRCA1+. I do not mind talking to women who have or had ovarian cancer, however, there is a difference between the 2. It is discouraging to come on this website and not even see a drop down box with Primary Peritoneal on it. It's rare, it's treated like ovarian, but it would still be nice to raise awareness.

I did EVERYTHING right - I get tested with the CA125 blood draw every 6 months along with a transvaginal ultrasound & pelvic ultrasound. The only thing that picked it up was an elevated CA125.

Hope to hear from some of you soon. I am in a study and I'm on cisplatin and taxol.

take care,
chicagocx

DGreer
Posts: 1
Joined: Dec 2010

Hello everyone,

I am new to this site and I have stage 3 Paratinel Cancer. I am so scared and is everyone els. I have doing Chemo for 8 months and my CA-125 is at 49. I started out at 3113. I was suppose to go to a maintance program but I am still to high. The doctor is saying I have 2 to 3 years. I am a Mother of two boys and Five Grandchildren.

blondecat
Posts: 13
Joined: Nov 2010

I started posting a different thread on our friend, Gerri. She was recently diagnosed with stage 4 PPC. She has seen four gynecological oncologists. Three of the four say chemo, surgery, more chemo. One doctor thinks that because the lung is the area that lights up the pet scan, she should have a lung biopsy before starting chemo. She has signs and symptoms that point to PPC. Gerri is accepting of the chemo, but is rejecting the surgical treatment. She is asking me to find out if others have been treated successfully with chemo only. She is aware her prognosis, per the books, is approx 3 years with all treatment. Would her prognosis be the same without surgery? She is willing to fly anywhere for additional opinions. I am fearing she is seeking an answer that doesn't exist. I know if it were me, I'd be anxious to have the surgery and have them get out as much of the cancer as they can. I am checking out MD Anderson in Houston, Bringham and Women's in Boston, Sloan Nettering in New York and Mayo Clinic in Rochester. Again, she has seen a couple of the best so far, going to Rush in Chicago and Dr. Doran in Park Ridge. Please, any comments, direction is so appreciated and needed. Thanks.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

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

blondecat
Posts: 13
Joined: Nov 2010

Thanks, Tina. Like you, Gerri's tumors are undetectable via pet or cat scans. The doctors describe her tumors as "sand like". With that said, what do you think is "too tiny" for a surgery? I'm wondering if medical practice is different in the UK? This is all so confusing as you seem to have great initial results from chemo only. The surgery is a serious one, with surgeons telling Gerri it would be a 6-8 week recovery period. Carbo and taxol are the drugs recommended for Gerri as well. There are a few surgeons here to seem to be using a heated chemo approach delivered direct to the perineum after debulking surgery. Anybody have any knowledge or experience with this treatment? Thanks to all -- Donna

Tasgirl's picture
Tasgirl
Posts: 85
Joined: Jun 2010

Hi Donna
Sorry to hear about your friend. I was diagnosed with PPC3 in October 2008. I am in Australia and my gyn/onc said surgery and then chemo. I underwent the surgery as I had ascites in the abdomen and the caking had spread to my omentum/overies/fallopian tubes and appendix which were all taken during debulking surgery. The only thing that showed on my CT scan (as far as I am aware) was the ascites and my CA125 was just under 4000. I had the carbo/taxol which worked for me but 14 months after chemo I now have enlarged lymph nodes and several small nodules. Holding off on chemo as long as possible.
If Gerri is fit and healthy she shouldn't have too much trouble with the surgery.
Regards Jenny

blondecat
Posts: 13
Joined: Nov 2010

Geri went and had a repeat of the scans last week. She was just told that a 3cm tumor is now seen on her right side. She is scheduled for debulking surgery on Monday. Biopsies will be obtained and chemo started soon after. How soon after debulking will she be strong enough for chemo? The plan is to remove the tumor, omentum, any lymph nodes and organs involved. My god. She has a large amount of fluid in the abdomen. Her lungs are clear now. Do they put a port in for drainage during the debulking surgery or is that put in after? So many questions.... so much is happening so quick.

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

Everyone is different and recovers at a different pace. I was ready (and eager) for chemo 4 weeks after surgery. I worked really hard at recovery: ate carefully, began walking right away - even if it was just half a block to begin, and rested a lot too. I had no port for drainage, the ascites were removed during surgery and then subsequent chemo prevents them from reforming (I think). Good luck.

blondecat
Posts: 13
Joined: Nov 2010

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..

katfrombuff
Posts: 1
Joined: Mar 2011

Hi Colette,
I am also from Buffalo and wondering if you are going to Roswell. I am BRCA1 and so is my sis. She has had breast , fallopian and now probably PPT. Hope we can talk soon. I would like to know your docs and advice you have gotten. Thanks
Kathryn

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

I tried to focus on foods that would really build me up after surgery. I usually eat very well, but surgery and recovery caused me to lose quite a few pounds and I was pretty weak (for me). So I tried to make every calorie count. I ate lots of high quality protein - animal and vegetable, leafy greens daily, some fruit, whole grains...you get the idea. I usually enjoy some kind of dessert each day, especially since I love to bake, but for the recovery time I eliminated most sweets in favor of more wholesome calories. My cancer stayed within my abdomen and was found on the serosa of several organs, but not metastasized yet. I didn't have any intestine removed - that sounds rough!

EllaSofia
Posts: 2
Joined: Jun 2011

After surgery and completing 6 rounds of carboplatin and taxol and 1 year of maintenance with taxol, my CT indicates a problem near my liver. I am seeing a surgeon tomorrow. Didn't know if more chemo was an option but if you have it it more than once I am hopeful that I will too and it will work like it did the first time. Thanks for the inspiration.

Daniel76
Posts: 6
Joined: Apr 2011

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

Tasgirl's picture
Tasgirl
Posts: 85
Joined: Jun 2010

Hi Daniel
I am from Australia and we do not do HIPEC there. I had the usual treatment of iv carbo/taxol after debulking surgery. After chemo there is no medication that I am aware of that you can take. A lot of people take supplements which seem to help some people. There are so many alternative treatments out there but whether they work who knows. There are also several books that you could buy in regards to alternative treatment.
Wishing you and your mum all the best. Jenny

Daniel76
Posts: 6
Joined: Apr 2011

Thank you, Jenny. All the best to you!

EllaSofia
Posts: 2
Joined: Jun 2011

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.

eward
Posts: 210
Joined: Feb 2010

You might want to re-type your message under a new post.

My mom is looking for trials just like you.

VickiReed's picture
VickiReed
Posts: 66
Joined: Dec 2010

I also have PPC, stage 4, and I am platinum resistant. I entered a trial that includes
Doxil, Avastin and Torisel. I have only had one complete round so far.
Day 1 --All three drugs
Day 8 --Torisel
Day 15 --Torisel
This Friday I start the second round. Alot of times I believe the trials for peritoneal and ovarian are done the same way, they just call it ovarian. Keep us posted on how you make out in your surgery. Sending prayers for you.
Vicki

Best Friend
Posts: 222
Joined: May 2011

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.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

I could have written the second and third paragraph of your post myself!!!!
Mum is stage 3 ppc, and this is exactly what I was doing , until I realised it was getting me no where, what will be will be , we cannot control the outcome of this disease.
I enjoy time with my mum so much now, every second is precious.
oh to happy days with mums xxxxx
Liz xxx

Momma Mack's picture
Momma Mack
Posts: 6
Joined: Oct 2011

I was diagnosed in August 2010 by my GYN as having PPC. I had never heard of such a thing and found as many here that many in the health care profession just lump it under ovarian cancer. There is always hope and as we go on this journey we are not statistics. I am very excited to have found this...
When I was first diagnosed the next thing out of my GYN's mouth was not to google... He put me in touch with an outstanding GYN Oncologist who also performed my debaulking surgery with my GYN. I started a blog to try and get more information out there and am sharing the link. I look forward to joining the conversation. Right now I have to run...

http://peritonealcancerdiagnosisjourney.blogspot.com/

Christina_0279
Posts: 1
Joined: Nov 2011

Hello! I am very new at this. I am 32 year old just told has primary peritoneal cancer. The have not told me stage or treatment yet. I just found out this past Thursday! I am very scared. I have a 9 year old boy and a husband of 12 years. I don't know where to go or even what to do. Can someone point out the right path for me right now. I am in Central Illinois area. I also have what is called an interstim inplant so a MRI is total out for me. So that is where my doctor is on hold with right now. Please tell me anything right now.

wmcurts48
Posts: 2
Joined: Dec 2011

Hi read your post. I also have peritoneal cancer. When dx in March of 2009 I was stage III. I went through extensive surgery and 6 treaments of chemo using taxol and carboplatin (spelling?)I live by the 3 F's Faith, Family and friends. I hope it helps you to know that I have gone 27 months in remission. My cancer has just returned. Keep fighting!! There are so many new drugs on the horizon. Im 62 by the way.
Lady Madonna

wmcurts48
Posts: 2
Joined: Dec 2011

Hi read your post. I also have peritoneal cancer. When dx in March of 2009 I was stage III. I went through extensive surgery and 6 treaments of chemo using taxol and carboplatin (spelling?)I live by the 3 F's Faith, Family and friends. I hope it helps you to know that I have gone 27 months in remission. My cancer has just returned. Keep fighting!! There are so many new drugs on the horizon. Im 62 by the way.
Lady Madonna

teresa92
Posts: 1
Joined: Jun 2012

Hi,
My mother age 58 found out in the middle of April that she has peritoneal cancer stage 3. She had surgery at the end of April and still having trouble with all this fluid building up in her pacrious and in her lungs. We are waiting for her to stop buliding up this fluid so we can start chemo. It's been so hard on me because I'm the only one who lives with her and I'm 20 years old and its been so upsetting. I live in Buffalo NY, and we being treated at Roswell Park cancer Ins.

You are all in my prayers, take care!
Buffalo NY

jamesinfantry's picture
jamesinfantry
Posts: 1
Joined: Feb 2013

I found out 5 hours ago my mother has peritoneal cancer, she will be going in for surgery in early March. She is going to Tuffs in Boston, from what she told me the doctor there is very good.  I do not like not knowing what to expect.  She is in her mid 60's and not in the greatest healt.  She just had surgery to take out her appendix and that is how they found it. I do not know what stage she is at or have much information because she had just got home and was very tired.  Please if there is anything I can tell her, any information that my mother and myself need to know I would be forever grateful.

Info that I have… they will be taking out some as many of the cancer cells as they can as well as some of her colon, and will be doing a type of chemo (she said a one time chemo during surgery that fills in all the open areas around her organs)

Please any suggestions or hope that I can give her would be wonderful

Thank you,

James

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

I'd recommend having a second opinion at Dana Farber. She's got time for that, and you may find a better treatment. By that I mean a treatment that she prefers. She's in Boston anyway, so it would be relatively simple to go to Dana Farber. Be sure whoever does her surgery is a gynecological oncologist.

wholfmeister's picture
wholfmeister
Posts: 260
Joined: Dec 2012

Hi, James!  I sent you a private message by email.  On the left-hand menu list, you'll see "CNS Email."

Wholfmeister

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