PRIMARY PERITONEAL CANCER

lyla said:

Stage IV PPC
I have recently been diagnosed with Stage IV Primary Serous Papillary Peritoneal Cancer and am scared out of my mind.

I felt fine until late December, 2009 when I went to the doctor for treatment for a urinary tract infection. I told him at the time that my stomach really hurt also and he informed me that something else was probably going on there. I got rid of the urinary tract infection but not the pain. My doctor ordered a CT scan of my stomach in mid-January, 2010 and I could have dropped dead in his office when he gave me the results. The report showed that I had cancer in my peritoneum, there were tiny spots on my liver, lungs, and heart, and some spots on my lymph nodes.

Since then, I have been to a medical oncologist, have had a colonoscopy done (all was well there), an endoscopy done (all was well there), and last Friday, February 12th, 2010, I had an MRI of my chest and liver area and an ultravaginal ultrasound. I don't have the results of either of those tests yet but fear for the worst.

I also presented with ascites (fluid in my abdomen that made me look 8 months pregnant). This was determined by the medical oncologist on my initial visit with him. Thereafter, a procedure was performed where they drew off 6 litres of fluid. I lost 12 pounds. They sent samples in for staining in order to see where the cancer originated. They say it's the ovaries but it actually began in the peritoneum. I now am filling up with fluid again.

I was encouraged by my medical oncologist to get a second opinion and am doing so this coming Tuesday. I will be consulting with a gynocologist/oncologist who is reputed to be excellent in this field.

The fear of the unknown has me in its grip! One minute I think I'm going to fight this awful disease with all my might and the next minute I think I'll just have them keep me comfortable with pain meds and save everyone around me a lot of grief.

I spent 8 years taking care of my husband who had colon cancer that eventually metasticized to his liver and then to his bile ducts. We buried him in August, 2008. At the same time, I have been running our business and helping take care of our 93 year old father. I will be 65 years old in April of this year. I do want to live and see my wonderful son graduate from college this May but I am soooo scared!

I will continue to update here as I receive the medical information.

Lyla

hope
I am searching for information because my mom was diagnosed with Stage 4 PPC last April. She is 63 and this was such a shock for our family, too. I am wondering where you live. It seems that getting a doctor/team of doctors who are the best in their field is important. My mom had ascites and plural effusion at the time of diagnosis. Since then she has had debulking surgery and 8 rounds of chemo. At her recent 3 month check up her CA125 was going up again, so she will begin treatment again soon. There is a trial with a non-chemo drug they might attempt or she will start a new chemo. They say they treat this as a chronic condition, which is somewhat reassuring.

I wish you the best. My mom has seen a gyno/oncologist who is said to be best in his field, too. Her new oncologist seems great too. We are in the Chicago area.

I have such hope for you and everyone on this board.

Eileen

Ann-PPC said:

Hang in there Lyla
My mother was diagnosed with PPC back in 2000 when she was 62 years old. Reading your post took me back to those initial days of trying to process the information and being so afraid. I just wanted to say how sorry I am that you are having to deal with this.

I hope that your treatment is as successful as my mothers. She went through surgery to remove the cancer, it wasn't a tumor but more like a web of tissue in her peritoneal cavity. I remember when they first told my mother that she had ovarian cancer. She asked how it was possible when she didn't have any ovaries. They had been removed years earlier.

After surgery she went through a tough regimen of chemo and was cancer free for over 5 years. Unfortunately, they did find a small tumor about 6 years after her initial diagnosis. They couldn't remove the tumor because of its location but were able to eliminate it with more chemo. She still gets nervous every time she has to go in for testing to make sure the cancer hasn't returned. However, she is living her life to the fullest.

Best wishes.

Hi Ann-PPC
Your story about your mum really inspired me. Your mum has been in remission for 5 years - wow. I was told by my oncologist that PPC is not curable. This conjured horrible "doom" filled images for me. i felt like "that was it" However your mum's story gives me hope. It is true PPC is a collection of cancer cells and not a tumour. I don't think many people really understand that there isn't a "tumour" to be surgically removed.

Good wishes to your mum xxxxx

lyla said:

Stage IV PPC
I have recently been diagnosed with Stage IV Primary Serous Papillary Peritoneal Cancer and am scared out of my mind.

I felt fine until late December, 2009 when I went to the doctor for treatment for a urinary tract infection. I told him at the time that my stomach really hurt also and he informed me that something else was probably going on there. I got rid of the urinary tract infection but not the pain. My doctor ordered a CT scan of my stomach in mid-January, 2010 and I could have dropped dead in his office when he gave me the results. The report showed that I had cancer in my peritoneum, there were tiny spots on my liver, lungs, and heart, and some spots on my lymph nodes.

Since then, I have been to a medical oncologist, have had a colonoscopy done (all was well there), an endoscopy done (all was well there), and last Friday, February 12th, 2010, I had an MRI of my chest and liver area and an ultravaginal ultrasound. I don't have the results of either of those tests yet but fear for the worst.

I also presented with ascites (fluid in my abdomen that made me look 8 months pregnant). This was determined by the medical oncologist on my initial visit with him. Thereafter, a procedure was performed where they drew off 6 litres of fluid. I lost 12 pounds. They sent samples in for staining in order to see where the cancer originated. They say it's the ovaries but it actually began in the peritoneum. I now am filling up with fluid again.

I was encouraged by my medical oncologist to get a second opinion and am doing so this coming Tuesday. I will be consulting with a gynocologist/oncologist who is reputed to be excellent in this field.

The fear of the unknown has me in its grip! One minute I think I'm going to fight this awful disease with all my might and the next minute I think I'll just have them keep me comfortable with pain meds and save everyone around me a lot of grief.

I spent 8 years taking care of my husband who had colon cancer that eventually metasticized to his liver and then to his bile ducts. We buried him in August, 2008. At the same time, I have been running our business and helping take care of our 93 year old father. I will be 65 years old in April of this year. I do want to live and see my wonderful son graduate from college this May but I am soooo scared!

I will continue to update here as I receive the medical information.

Lyla

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

lillin20 said:

my grandma too
Hi everyone. I know I am not the "personal" cancer patient here...but my grandma is and she is like a mother to me. She is not computer savvy so I promised her I would come here for her.
Her story
She was diagnosed with Primary Peritoneal Cancer stage IIIc in November 2005. From the beginning we were feeling hopeless because the first doctor we saw told us that she had a less than 20% chance at survival past 5 years. I immediately jumped online and started researching. I found that this information wasnt correct nor was it accurate, and the info was from the 70s!!! Needless to say we found a new and better doctor! My grandma completed Taxol and Carboplatin- but it was VERY tough on her...she lost her hair (not a big deal to her), but immune system was horrible. Her blood counts continued to stay and remain awful for quite some time AFTER the chemo too. About 2 years later in 2008 she was told she relapsed and needed to begin Carboplatin again. They didn't want to do the Taxol for her the second time because it gave her such horrible neuropathy and that was miserable for her. She seemed to tolerate the Carbo MUCH better the second time around.
Now
Here we are again...it's only 10 months since her second round of chemo was done she has relapsed yet again. This time they told her she cannot have taxol or carbo b/c it is a 2 time max. I dunno. Anyways she had a MUGA procedure to check the status of her heart and today they started her first of 4 rounds of Doxil. They have told her that Doxil is EASY to tolerate and she won't have any issues with it except for the hand and foot syndrome. But from what I am reading this isn't necessarily accurate.

So....I am wondering if you ladies have any advice or suggestions for us. I know that my grandma wants to keep fighting and we do too. Could any of you provide some good resources for us...or just your thoughts and words of wisdom??
Thanks!
LILLIN20
*also- my grandma's mom had stage 4 ovarian cancer and lived 25 years after that diagnosis.....my concern is...is this hereditary???

It is definitely hereditary
Your grandmother should be tested for the BRAC gene mutation. If she is on Medicare, they will pay 100% of the cost, because she has such a strong family history of ovarian cancer. Then you can be tested, using her data, and it will be much less expensive.

Also, women who test positive for BRAC 1 and/or 2 have an 87% chance of developing Breast Cancer.

I have not had Doxil but I understand it works well for many people and is indeed easier to tolerate than Carbo or Taxol.

Carlene

PPC, stage IV
HI,
I was diagnosed in December, 2009 with metastatic ovarian cancer. I had a right pleural effusion that got me to the hospital. Until then, I had vague symptoms but suspected my upper abdomen looked fatter and different. This has been a fear for quite some time in all honesty. I am 55 and a nurse, so I've passed the vague symptoms off as being due to post menopause and aging.
I received my first round of chemo while in the hospital in December to prevent the fluid from coming back around my lung. The CT scans showed caking in the omentum, but minimal disease if any in the pelvis. That's when PPC was mentioned. In January I saw a surgical oncologist who agreed with local physicians about waiting to do surgery until I had 3-4 rounds of taxol and carbonplatin. This did not bring peace to my mind, so I traveled out of state to see a surgical gyn oncologist recommended to me by a dear friend. He concurred with the care that I had received, ordered another CT scan and advised immediate expoloratory laporotomy to remove all that he could of the cancer.
I had surgery 2/2/10 and praise the lord it did go better than expected with the majority of the cancer being in the omentum, which was removed, along with my spleen, ovaries, tubes and uterus. Two lymph nodes were removed as well. All were positive for low grade serous cells on the surface. I have just completed my 5th round of taxol/carboplatin and am contemplating Intraperitoneal chemotherapy.
Unfortunately, there is a difference in opinions between the surgical oncologist and the medical oncologist and I am in the middle wanting desparately to do everything possible to live a long life. I believe that God has been with me through this all and will continue to guide me in seeking the best options. Most of the time I am happy and optomistic regardless of what the internet and research shows statistically. I feel great and find it so hard to believe that this disease is in my body. I hope that you all will continue to research and share what you find on this network. There is hope. New research is coming out everyday and we know that good nutrition, exercise and above all faith, is the best treatment of all.
Dr. David McIntosh at the University of Mississippi is one of the most caring, progressive and expert GYN, surgical oncologist in the nation. I believe that I did see a comment of someone asking about a physician. It is critical that anyone facing this disease seek expert care from an oncologist specializing in this area.
Begin each day knowing that today is a good day and there is hope. Be aggressive in seeking the best of care possible. We can beat this. God Bless.

spa said:

PPC, stage IV
HI,
I was diagnosed in December, 2009 with metastatic ovarian cancer. I had a right pleural effusion that got me to the hospital. Until then, I had vague symptoms but suspected my upper abdomen looked fatter and different. This has been a fear for quite some time in all honesty. I am 55 and a nurse, so I've passed the vague symptoms off as being due to post menopause and aging.
I received my first round of chemo while in the hospital in December to prevent the fluid from coming back around my lung. The CT scans showed caking in the omentum, but minimal disease if any in the pelvis. That's when PPC was mentioned. In January I saw a surgical oncologist who agreed with local physicians about waiting to do surgery until I had 3-4 rounds of taxol and carbonplatin. This did not bring peace to my mind, so I traveled out of state to see a surgical gyn oncologist recommended to me by a dear friend. He concurred with the care that I had received, ordered another CT scan and advised immediate expoloratory laporotomy to remove all that he could of the cancer.
I had surgery 2/2/10 and praise the lord it did go better than expected with the majority of the cancer being in the omentum, which was removed, along with my spleen, ovaries, tubes and uterus. Two lymph nodes were removed as well. All were positive for low grade serous cells on the surface. I have just completed my 5th round of taxol/carboplatin and am contemplating Intraperitoneal chemotherapy.
Unfortunately, there is a difference in opinions between the surgical oncologist and the medical oncologist and I am in the middle wanting desparately to do everything possible to live a long life. I believe that God has been with me through this all and will continue to guide me in seeking the best options. Most of the time I am happy and optomistic regardless of what the internet and research shows statistically. I feel great and find it so hard to believe that this disease is in my body. I hope that you all will continue to research and share what you find on this network. There is hope. New research is coming out everyday and we know that good nutrition, exercise and above all faith, is the best treatment of all.
Dr. David McIntosh at the University of Mississippi is one of the most caring, progressive and expert GYN, surgical oncologist in the nation. I believe that I did see a comment of someone asking about a physician. It is critical that anyone facing this disease seek expert care from an oncologist specializing in this area.
Begin each day knowing that today is a good day and there is hope. Be aggressive in seeking the best of care possible. We can beat this. God Bless.

Hello Spa & Lisa
I have PPC & I guess I am quite lucky as there is no evidence of cancer in any of my other internal organs but I did have cancer cells around my lungs so my oncologists aren't sure whether I am grade 3c or 4. I must get that sorted out next time I go to hospital.

I have just finished carbo/taxol and they have decided not do do any surgery on me because the cells are thinly spread out like a sheet. I think they said the cells are too small to remove surgically.

The way they found my cancer was by a CT scan & the way they knew it wasn't ovarian was that my ovaries are healthy & clear of cancer. My CA125 has dropped from 1119 to 70 and I still have another reading to go. So I am keeping everything crossed in the hope that it continues falling.

My oncologist is a great guy and tells it as it is. Its amazing how you put yourself in someone else's hands and trust them with your life.

Best wishes Tina xxxx

nicnol said:

sharing info about my mom
Hello, my mom was diagnosed with PPC last February after her surgeon found masses on her omentum, colon, ovary during surgery to remove her gall bladder. She had symptoms of IBS for a whole year before the nurse practitioner she had been seeing for "her nervous stomach" finally sent her to a gastroenterologist because she had tried everything from Prozac to Immodium and couldn't get rid of her symptoms! She is Stage III, she had 9 rounds of chemo, debulking surgery and 9 more rounds of chemo which ended in Oct. 2009. She has had her CA125 levels checked twice since then and so far so good. My question is, did any of your mom's also have other cancers earlier in their life? My mom had colon cancer at 53 (20 years ago). She had 18 inches of her colon removed, no chemo, all was well. I am just wondering if there is a connection. Also, if the cells of PPC are the same as ovarian cancer cells, how do they know its PPC????

Anyway, I feel like a ticking time bomb. She has not had genetic testing as far as she knows. She doesn't ask very many questions about what she has, what they are doing to her, etc. she's from that generation where you don't questions doctors! Drives me nuts!!!

Lisa in Michigan

how they know
many times PPC is diagnosed in women who do not even have ovaries anymore (from ovary removal). From what I understand PPC IS ovarian cancer...the only difference is- it is found elsewhere (Mainly and most often- the omentum and colon)
The bummer thing is that the Omentum is an "organ" that regrows...so simply removing it doesn't mean the omentum is gone...it will re-grow and thus PPC has the opportunity to come back...it stinks!

My grandma was diagnosed the SAME way as your mom...she went into the hospital w/ pain in her side and they did an ultrasound and decided she needed to have her gall bladder removed- after the gall bladder was examined in pathology they noted PPC on it...then our journey began.

My grandmother never had any other cancers in her life- and neither did my great grandma...just this one.

CH1836 said:

Hello Everyone,
It's been a
Hello Everyone,

It's been a few weeks since I last visited the site, I had my 3 month check in February,
everything was fine, my CA125 was 6.

Some women do not have an elevated CA125 with PPC, my CA125 prior to surgery was 17, so for me there has to be other diagnostics to determine disease.

My GYNO is wonderful, very compassionate and caring, I trust him, but there's only so much that can be done.

This becomes a wait and see, and in the meantime you make the best of each and every day. I've read the posts, having an gyn oncologist is best, they know how the disease works, some physicians know very little about PPC, other than you treat it as ovarian. The more I learn, the more I see that PPC is being treated as a chronic condition.

Keep yourself as healthy as possible, eat well, rest and surround yourselves with loving family and friends.

If your blood counts are at a good level prior to treatment, you're able to tolerate them better.

During my chemo sessions, I did notice that the women who were very frail seemed to be under weight. I know how hard it is to have an appetite at this time, but my family forced me to eat and when I couldn't, I drank ensure suppliments. For me it helped me tolerate the treatments, and although it took about 7 days for me to regain my strength, my blood counts were normal prior to the next round.

I wish you all strength and courage, and hugs and kisses to your family and friends who rally with you in support

All be well, Caryn

Hello Caryn
I was diagnosed in July 2007. It's been a long road. I have learned to live in the moment. My Ca 125 was never elevated. It's not a good test me me either. Dr Warshal at Cooper University Hospital is my Gyn/Onc. He added a HE4 test which may or may not help diagnose a recurrence. I am scheduled for a CT scan of the chest, abdomen and pelvis next week. It's been a year since my last one. I go for internal exams every 3 months. It's really a pain in the butt. Lol. I try to keep healthy and exercise. I gained weight on chemo because of he steroids. They raised my blood sugar.
I just went back to work part-time. I am still tired and I have some neuropathy in my hands and feet. Some days are worse than others. I also had 12 rounds of taxotere for consolidation every 4 weeks. Hang in there.
keep in touch
Beth

Tina Brown said:

Hello Spa & Lisa
I have PPC & I guess I am quite lucky as there is no evidence of cancer in any of my other internal organs but I did have cancer cells around my lungs so my oncologists aren't sure whether I am grade 3c or 4. I must get that sorted out next time I go to hospital.

I have just finished carbo/taxol and they have decided not do do any surgery on me because the cells are thinly spread out like a sheet. I think they said the cells are too small to remove surgically.

The way they found my cancer was by a CT scan & the way they knew it wasn't ovarian was that my ovaries are healthy & clear of cancer. My CA125 has dropped from 1119 to 70 and I still have another reading to go. So I am keeping everything crossed in the hope that it continues falling.

My oncologist is a great guy and tells it as it is. Its amazing how you put yourself in someone else's hands and trust them with your life.

Best wishes Tina xxxx

Hi I'm New
Forgive me, I'm new to your site and I just posted a message, but it ended up way back in the chain of messages. I'm afraid it won't get read, or do you all go back and look for new messages that were linked to older ones? My other post was titled "I'm afraid I have it". Sorry if I didn't do it right.

Donna

oops....
Sorry, double post.