PRIMARY PERITONEAL CANCER

Christina_31 said:

Primary Peritoneal Carcinoma
Hi Chicagocx, I can identify with you. I was diagnosed this past April with Serous Papillary Primary Peritoneal Carcinoma, Stage 3C @ age 31. It find it extremely fusterating when trying to information about this diease. As you said and many of us with ppc find out, yes it behaves as ovarian ca, but it is different. Currently I am on the GOG-0218 phase III trial with Carboplatin & Taxol -/+ bevacizimab (avastin). It is a blind study.

After my third treatment, my CT scan of the abdomen and pelvis did show some improvement. I would also like to mention that I was only have to have one fallopian tube and ovary removed during my surgery, not that total abdominal hysterectomy and omentectomy that was planned.

I have just completed cycle #6 and my CA-125 is going up. It is the scariest thing in the world. I feel that I am at a cross roads....and considering a second opinion. Currently I am being treated in the Chicago. So I guess my question would be to anyone reading this. Does anyone have any recommendations, as to who to seek out for a second opinion on this type of cancer? I did see that someone mentioned Mayo Clinic, Rochester, MN....and that is definately a medical center that I am considering.

Take Care,

Christina

MichaelaMarie said:

Primary Peritoneal Cancer
Good to meet you, Chicagocx.

My "ovarian" cancer is actually primary peritoneal cancer also. But, all of my charts, the lab, the doctors and nurses, all refer to it as ovarian. I had five fist-sized tumors, and was staged 111C. That was just over five years ago. I've done many different chemo drugs, and was in a trial a couple of years ago with Doxil. That was probably the most difficult one for me. I am now on Cisplatin and Gemzar. My cancer was found via a pap smear, which I understand rarely shows up my type of cancer (so in that sense, I was very lucky). Apparently my insurance will not cover the BRCA1 test, so I don't know if I have the gene or not, but I would really like to know.

You are very young, and it seems like they are coming through with more and more chemotherapys in the last year, so hopefully that can aid in finding out more about this horrific disease.

There may be more ladies on this site such as myself that have the same cancer as you and me, but refer to it as ovarian, as I always have. So, stay on the site, and hopefully you will meet others.

This is a wonderful forum and I think you will benefit greatly from it. I'm sure I can speak for everyone and tell you that we are all hoping and praying for you! Luv and hugs, MM

Bambibino said:

PPC
Hi everyone! I am also new here. My cancer was discovered during gall bladder surgery. They call it ovarian cancer, but all my "stuff" was removed over 25 years ago. It was explained to me like this: When you are forming in the womb, the peritoneal and ovarian tissues are the same. So the cancers are treated the same and regularly referred to as ovarian cancer. Seems insurance companies will more readily accept ovarian cancer over peritoneal cancer. Just terms, same cancer. I am stage 3C and currently have a small, slow growing tumor in the peritoneal area. I have been through debulking surgery and have been fighting this for 4 years (I am 58 now). I am also Type 1 diabetic. So the chemo's and steroids usually will push my sugar numbers into the upper 500's. But they get back to normalish within a couple of days. I am not on any special diet except for the diabetes.
You are doing the right thing in keeping your mom's attitude positive and happy. That, I know is a big job, but you are doing it! Hurrah! I have learned to wean all of the negative people out of my life and just surround myself with positive and caring people. It's my life and I choose to do this, for my own mental and physical health. Keep on helping your mom to be happy and positive. This will extend her life more than you know!

Part of HIS plan,
Terri

Tina Brown said:

Just been diagnosed - help!
I've just been reading everyone's blog and it is reassuring to hear of other ladies who have been diagnosed with this "beast" I call it that as it feels like my body has been taken over by something.

I was first diagnosed with fluid on my lungs. I thought I had a chest infection so when the doctors told me they had found "abnormal" cells in the fluid they had removed I was completely devastated as it was not something I was expecting. After loads of blood tests and a CT scan I was diagnosed with PPC where they say the fluid on my lungs are kinda classed as secondaries. On reading everyone's blogs, I do have some fluid on my stomach but it was the fluid on my lungs that was the most distressing as I was struggling to breathe.

I have just undergone 2 chest drains (not at the same time I hasten to add!!) and can now breath much more easily. I am meeting with an oncologist in a few days to discuss my treatment which I assume will be chemotherapy as surgery is not necessary as no tumours have been found.

I am 49 years old and consider myself to be fit and healthy as my hobby is running. I would like to keep in touch with people who are under going the same illness as me so we can keep each other going and share treatment stories.

Tina

CH1836 said:

It's 2010, and the reality has hit
I've been reading this blog for months, and I finally have the courage to join.
I was diagnosed in April 2009 with PPC. I had a hysterectomy 8 years ago at the age of 43 due to chronic pain during menstruation and enlarged fibroids.

I woke up one morning with a slight stain and made a gyn appt for the next day. The Dr said everything looked good, she couldn't find a source of staining and did a pap smear. The pap came back questionable, and the DR performed a colposcopic biopsy. She found a tiny pea size cauliflower lesion in the folds of my cervix, sent it off for evaluation, and the news came back 10 days later. The "C" had spread. I was diagnosed with Stage 3 PPC. I had a complicated debulking surgery a week later. I spent 2 weeks in the hospital and began chemo 2 weeks later. My last treatment was September 16th, my daughter's birthday. I'm not complaining about the surgery, or the chemo, or any of it. I still cannot bring myself to admit I have this. I felt fine before this and I feel physically fine now. I have a 3 month check up Feb 9, I'm praying everything will be ok. I've been in the ER twice with panic attacks, once for an asthma attack and the other for stomach pain, they did cat scans and everything was negative.

I find it hard not to think about the what ifs, but going to work and being busy helps

I find the most peace in being with family and doing the things I love, I hope that you all can do the same.

Blessings to all, Caryn

cdwright said:

Intro
First, I wanted to thank you all for sharing your stories. I don't understand how this type of cancer is so unknown...there's not even a topic for it on these boards.

http://www.caringbridge.org/visit/sinnes

My mother was diagnosed in October of 2007. I've included a link to her caring bridge site above, in which she's journaled about her treatments.
I live a few hours away, have a full time job and two children so I can't be there as often as I'd like but I did go up last week after she was admitted into the ICU. She's been having fluid accumuliation around the lungs for a few months and had undergone a few thoracentisis (thoracentisi?) procedures. She finally was so frusterated by the breathing issues that she elected to have pluradisis done...All I have to say is that when I arrived last Tuesday, I didn't expect she would live until Wednesday. It was terrifying to be quite honest. She pulled through and will (hopefully) be released from the hospital soon thank goodness.

Anyway, I just wanted to share her story and I hope to be able to report on a full recovery and at least a few more pain free months with my mom. -Cary

Tina Brown said:

Just been diagnosed - help!
I've just been reading everyone's blog and it is reassuring to hear of other ladies who have been diagnosed with this "beast" I call it that as it feels like my body has been taken over by something.

I was first diagnosed with fluid on my lungs. I thought I had a chest infection so when the doctors told me they had found "abnormal" cells in the fluid they had removed I was completely devastated as it was not something I was expecting. After loads of blood tests and a CT scan I was diagnosed with PPC where they say the fluid on my lungs are kinda classed as secondaries. On reading everyone's blogs, I do have some fluid on my stomach but it was the fluid on my lungs that was the most distressing as I was struggling to breathe.

I have just undergone 2 chest drains (not at the same time I hasten to add!!) and can now breath much more easily. I am meeting with an oncologist in a few days to discuss my treatment which I assume will be chemotherapy as surgery is not necessary as no tumours have been found.

I am 49 years old and consider myself to be fit and healthy as my hobby is running. I would like to keep in touch with people who are under going the same illness as me so we can keep each other going and share treatment stories.

Tina

eward said:

Caryn,
My mom is 63 and was diagnosed with stage 4 PPC last April 2009, as you were. She had successful debulking surgery and 8 rounds of chemo. She just went for her 3 month follow up after chemo. Cat Scan is today. Her CA125 has climbed to 73 from 30 at the end of chemo. She also feels good. The emotional aspect and anxiety are the most difficult at this time, I think. She will find out what treatment they will proceed with in a week and a half - either some sort of pills or a different chemo, depending on the results of the cat scan.

The best of luck to you at your appointment next week.

Have you had replies from anyone else? We are in the Chicago area. Do you mind saying where you are from?

Eileen

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