Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Has Anyone had this Cancer??

Dove
  • By Dove
  • Posted April 27, 2008 at 9:43 pm · 32 replies
  • Shared with the public
7 Recommendations

Hi I finished my last round of Chemo the first of Nov. 2007, last week I had a CAT scan it was clean, my CA125 was 10 I was wondering if anyone on the group has had this type of cancer
peritoneal cancer (PAYR-ih-toh-NEE-ul KAN-ser)

Cancer of the tissue that lines the abdominal wall and covers organs in the abdomen.

I am told it is very much like overian cancer, I had a total hystoretomey 4 years ago. Thanks for all the support. I love reading everyones encouragements.
Hugs Dove

Explore topics in this journal entry and replies:

Cancer Surgery Ovarian cancer Hernia Carboplatin Sarcoma Stress Taxol Dehydration Hysterectomy Breast cancer Cervical cancer Taxotere Primary peritoneal carcinoma Pain Lung cancer

32 replies

mmtraynor

Hi. Yes, I also have Primary Peritoneal Cancer. Only symptom was rapid enlargement of the abdomen. I had acities fluid drained, and then a radical hysterectomy, followed by 6 initial chemo treatments, and then a year of maintenance chemo. I finished chemo March of last year and am still in remission.

Marlene

zircons

I was also diagnosed with primary peritoneal cancer in June 2006. I had basically no real symptoms. I was debulked and had part of my colon removed. I had six rounds of chemo also. So far, I have been in remission for almost two years. I am so thankful.

OldieLocks

Hi Dove, I had ovarian cancer, two masses in my lower abdomen. It had spread to the lining of my abdomen which was causing the swelling. I had the debulking and 6 rounds of chemo and my CA125 is 9 now after two years. Did you have to take shots for the red and white cells? That was so painful for me. The shot took at least a full minute to go in. A good tech would roll the needle around in his hands to get it good and warm. That would help.

Hope you continue to do well. Your CA125 is good so I understand from my oncologist.

Rachel

treeshouse

Hi- I know you probably search all over the web. This is the website I went to to learn about the cancer you have: http://www.ucsfhealth.org/adult/medical_services/cancer/pelvic/conditions/p eritoneal/signs.html

also the mayoclinic.com and just going to google.com and doing a search of the cancer. I don't know how computer savvy you are....Tree

Dove

Thanks so much for the replys, all of you give me hope, When the Doctor told me I only had a 20% chance of beating this, and that on a average I would live maybe 5 more years. I told him your wrong I am going to be around long enough to see you retire LOL. He is my Angel!!

Dove

Thanks so much for your reply, I am told this is a rare cancer. I am thankful for you that you are doing so well. We will all travel this road together. My husband has a really bad heart so I try not to talk to him to much about it. He can't handle the stress. I can see the pain in his face. Thanks again and many warm Hugs Dove

Dove

Hi Rachel yep I had those shots I told everyone they made me feel worse than the chemo did I dreaded them, I would have Chemo on Friday and then the Shot on Sunday morning. They sure made my arm sore I had to take them in the same one cause I had a pic line in the other. Well gotta run hubby had doc appt. Lots of warm hugs to you too Dove

Dove

Hi Tree
Thanks for the link, yep I have been on the computer awhile but you still miss things, I saved it under my favorites. Copied some of the first part for some of the others. Thanks so much for sending it.

Signs and Symptoms


Peritoneal cancer is a rare cancer that develops in the peritoneum, a thin, delicate sheet that lines the inside wall of the abdomen and covers the uterus and extends over the bladder and rectum. The peritoneum is made of epithelial cells. By producing a lubricating fluid, the peritoneum helps the organs to move smoothly inside the abdomen. Peritoneal cancer looks and behaves like ovarian cancer, but the ovaries are minimally involved. Women who develop ovarian cancer after having had their ovaries previously removed likely have peritoneal cancer.

Thanks again and very sweet warm hugs your way
Dove

mjill

My mom had stage 4 epithelial OCA and survived for 23 years only to have a recurrence of Primary peritoneal which her doctor said was actually part of the same disease process as her earlier cancer and not uncommon in woman who have had epithelial OCA. She passed away from complications after surgery( which was pretty devastating to me) but her doctor was convinced that with the new treatments today and her history of beating the disease that she had a good shot at beating it and it sounds like you are on your way to contnued good health. My prayers are with you. MJ

acrensha

Dear Dove,
I was also diagnosed with Primary peritoneal cancer in September 2007. I was in in stage IV. I have completed 6 rounds of chemo and now have a CA125 of 13. Also, the first doctor I saw gave me 3-5 years. My current doctor feels good with my prognosis and is giving me a better quality of life. Medicine and studies for this cancer have come a long way. We can beat this and will live a long happy life.
I will keep you and others with cancer in my prayers.
Alexa

JC1945

That's exactly what I have ... my CA hit 100+ and the MD put me on tamoxifen (which only works for 10% of ovarian ca patients). That was July 07 and by Dec 07 my CA was 20. It has since risen slowly to 46 .. so I am due for a CT/PET and we'll see what is going on. I am really bummed because I was hoping the tamoxifen would work for a couple of years, but that's how it goes.

Worth a try ... no real side effects for me except some hot flashes.

Judy C.

kla

A funny thing happened on my journey in ovca . After consulting a genetics specialist. No one had ever said anything to me about both of my parents dying from cancer . My Dad had 5 primary sights which really didn't even raise an eyebrow from his oncologist. When The last one hit I asked why .He said was almost a forgone conclusion Dad would have Cancer .He was on the cleanup crew at Nagasaki after WWII .So I go see the genetics Dr. and she says did you know it's possible your Mom had untreated ovarian cancer.I was blown away.She died from undiagnosed peritoneal cancer.long story short is she'd had female problems for years. In her late forties she'd had enough and insisted on a complete hysterectomy.In the ensuing 15 years she had 5 hernia surgeries.The sixth they went in and closed up.She lived 3 weeks at home. When I asked her oncologist why? His answer was rare and these things just happen.
I did some family research and think this may have been a thing going on for a long time.I haven't had the testing done as insurance won't pay and just can't afford it at this time. I have 3 daughters and this bloody scares the bejesus out of me. They have all gone to their ob/gyn and they have each decided to do a ca125 on their reg visits, the older who's 40 Dr. wants one done every 6 months.The good news is their Drs. are looking for protocol's and study's the girls can participate in. We have an advantage in that we live in the Houston area and have a good deal of teaching and research hospitals including M.D.Anderson.
I will tell you Drs. assure me Mom would probably have survived if diagnosed and treated in this day and age.Funny thing is some days seems it was moments ago & others a millennium ago.Was really 13 yrs ago.
Gee but I do wander on .Good Luck and when looking to see if you have history check out periotneal.

Shelter

I was diagnosed with

Primary Peritoneal ( Peri-TOE-Neal)
Carcinoma; Uterine Papillary Serous Adenocarcinoma

October 2008 , after having a Radical Hyterectomy
now receiving Chemo Treatments

I ahve lots of information on it save on my computer as I did about 8 weeks research daily... prob 8-10 hour a day reading.... before starting Chemo..


The Discharge diagnosis was
Primary peritoneal carcinoma or PPC
but the actual report said..
Primary peritoneal carcinoma Uterine papillary serous adeno carcinoma

They found evidence on my diaphragm also of epithelial cells; and in numerous places in the pelvis.

*** def: Papillary tumor (PA-pih-LAYR-ee TOO-mer)-
A tumor shaped like a small mushroom, with its stem attached to the epithelial layer (inner lining) of an organ
I found a great amount of information
at these sites

http://www.dana-farber.org/pat/adult/gynecologic-cancer/diseases-treated/pr imary-peritoneal-cancer.html

http://www.cancerhelp.org.uk/help/default.asp?page=6029


http://www.sciencedaily.com/releases/2008/03/080310155228.htm

Powderpuff

Hey Dove!

Wow, I thought I had a weird cancer. I have Vulva Cancer. They had to radiate me all around the Viginal area and I lost all my fur. We have several American Eskimo dogs so my husband told me not to worry 'cause he would collect all their shedding and start mking Beaver Wigs. There is one major problem. I am only 46 and our dogs are pure white. He is making me much older than my time! I hate Him! - but, he is patient and he is trying to help. lol.

I love this site, just when you think you have something that no - one else has darned if someone doesn't come up with a cancer tha even you have never heard of.

This isa great site. I am sure there will be someone that can share and experience very much like yours. I am a smoker. Obviously my primary concern was Lung Cancer. I have had cervical cancer in my late twenties and now in my forties, Vulva cancer. I suspect, but I certainly don't hope for it, my next battel will be with Lung cancer.

I know I really didn't answer your question but if you ever feel like just talking, please feel free to write.

Yours,

Brenda Lee.

suemac

Hi Dove,

Gail Purtan, the wife of Michigan celebrity radio host Dick Purtan is an 11 year survivor of stage III/IV PP cancer. She'd had her ovaries removed years before which delayed her diagnosis. I heard her speak last year at Karmanos.

Have you ever read A Feather in My Wig?

Sue

tje

Hi Dove,

Yes, I have PPC Stage 3 and had total hysterectomy in 1997 to prevent ovarian cancer. I started chemo in Nov. 08 and now my blood work looks good and I am on a "break" until I go back to dr next month. We'll see what happens then. Keep your chin up and let your husband know you think you will make it. I had the same prognosis as you. Let me know how you are doing.

Jan

Shamrock2009

Hi Dove,
I have stage IIIc Ovarian cancer. I will tell you what I remind myself on a daily basis---No matter what the statistics are--why can't I be in the good % side of the statistics??? I am an oncology nurse and have always told my patients this and now it relates to me.
Keep positive!!!!

Annasvenska

Shamrock

I will say amen to that!!!
I had a very rare form of bladdercancer (adenocarcinoma) and I believe that it affects 1 of 1 000 000 so if I am affected with that rare cancer then I can also be one whom will do exceptionally well and I can also completely beat it.
Statistics actually means less to me now when I am a cancer survivor.

Anna

wacoberly2

My wife has been diagnosed with stage IV primary peritoneal carcinoma scarcoma. She has low kidney function, past heart problem and is 70 years old. She has had 3 rounds of carboplatin/taxol which reduced her tumor count to 10. Recently the count has gone back up to 40 and another round of chemo with drixol is being tried. Last week a fluid build in her chest which caused painful breathing resulted in a painful procedure to remove 1+ liter of fluid. A year ago she was given 6 months to live. She is a fighter. Please pray for her.

wacoberly2

Do you give any merit to all of the cures claimed by using alternative therapy? My wife has a terminal case of primary peritoneal carcinoma sarcoma.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

You