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Primary Peritoneal Cancer /Breast Cancer Survivor

diagnosed2009pg
Posts: 8
Joined: Mar 2011

I am looking to communicate with anyone who has been recently been diagnosed with Primary Peritoneal Cancer (PPC). I am a 6 year breast cancer survivor, (2005) but was diagnosed with PPC in November 2009. PPC was determined not to be metastatic breast cancer. After undergoing major abdominal debulking surgery and 6 months of intravenous (IV) and intraperitoneal (IP) chemo therapy, I enjoyed 8 months in remission. I had a recurrence in February 2011 and am currently being treated with weekly chemo cycles of Carboplatin/ Taxol week 1 and Taxol weeks 2 & 3. A recent CT scan indicated "improvement" in tumor sizes. I am just starting cycle 4 of 6. My oncologist describes the cancer as "ovarian" because the RX and cell structures are similar. Although I had never heard of this cancer before, I am hearing of more and more diagnosises. I believe that we need to raise the awareness if this aggressive and rare cancer.

My saving grace has been my faith and my reliance on God's faithfulness and provision through out this battle. I would welcome any positive communication with other women who may share this diagnosis and my love of Jesus Christ.

I claim everyday as a gift.

Post dates seem to be ascue??? December 31, 1969? this is actually being written May 16th, 2011.

jcorbo
Posts: 1
Joined: May 2011

Hello, I'm sorry of your diagnosis of PPC. I don't actually have it but am very familiar with it, my mother was diagnosed with it. I wanted to give you a website to the only PPC Foundation where you may find some support, I hope it does offer you support and if you would like anymore information or support please feel free to email me directly at jencorbo7@gmail.com. Keep up your faith, I know that is really one of the only things we really have here. God Bless you and your family. I hope you beat this awful cancer.

http://www.primaryperitonealcancer.org/

With warm thoughts,
Jennifer Corbo

stella65
Posts: 152
Joined: Feb 2011

Hi, My mum has just finished her chemo for ppc and has her scan results on friday, I looked at the ppc foundation website and ended up in tears! I know they are telling it like it is but when you are trying to keep strong and positive to fight this horror that is ppc I found it depressing....... I didn't look at the support part just the stories and write ups so maybe the support part is much better

Please everyone keep positive thoughts for my mum on friday, she is an active woman who just wants to be fit and strong to enjoy our lovely countryside and walk her dog!

Thank you

diagnosed2009pg
Posts: 8
Joined: Mar 2011

Stella65,
So I see you are one of those "Night" people?

Finding information on PPC is very frustrating and often what you do find is confusing and terrifying. I was diagnosed in November 2009 at age 62. The treament suggested for me was debulking surgery and 6 cycles of chemo. I chose to do both the IV and IP chemo with Cisplatin and Taxol, after which I enjoyed 8 months in remission. I had a recurrence in February 2011 and am currently undergoing chemo RX weekly with Taxol and Carboplatin and am about halfway through. I encourage you to be a positive influence for your Mom. Spend time with her. What has kept me going is God's Grace and the love of family and friends. The little things do matter!

I have come to realize that everyone faces the uncertainty of tomorrow, not just cancer patients. I encourage you both to live each day to its fullest, grab joy where you can find it, and only face what is placed in front of you today. Encourage your Mom to do whatever she feels like doing, but to also rest so that she can heal. We may not know the outcome, but we can choose how live today.

I remain hopeful. I seek God's will and accept the love that he sends my way. I would consider it an honor to share this journey with you and your Mom. Keep the faith. God will lead you and your Mom if you ask him to be a part of this journey. Remember that test results are not a state of mind, they are just results which we respond to with options. A positive attitude is immeasurable through this experience. Also, I encourage you both to allow yourselves to acknowledge your feelings and then step forward.

I am a dog lover too and my dogs wake me every morning giving me kisses and bring me toys! How great is that to start your day! I am praying for encouraging results on Friday. diagnosed2009pg

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

I was also diagnosed with PPC November 2009 ....... what a coincidence. I had a double plueral effusion and the tests showed cancer cells. My doctors were baffled as to where the primary site was and it took them a few weeks to locate it. I had carboplatin & taxol and finished last March. I had about 6 months before my numbers started rising and by October 2010 I was back on doxil. This did not suit me & I became ill so I wentback on carbo/taxol. I finished that in March this year. I am feeling really well and my hair is growing back rapidly.

I too have a new atitude to this cancer. I spent most of last year going from sadness to anger over the loss of my old life and the loss of my possible future as I thought I would die very soon. My children are grown up and both in lovely relationships so I thought I would never get to meet my grandchildren. But now, this year I am going to be a grandma in September and I am so excited. My attitude now is that......... I have a different possible future now. I will have to endure chemo from time to time because my cancer is chronic but it can be managed by chemo. I have accepted this and have found a new way to live with this illness. I am not longer scared as I have some idea of how I will die and know it is not as scary as I used to think. My mum died almost 3 years ago so I know she is waiting for me.

Never give up, there is always another chemo to try which may give you a bit longer in remission. As long as you are not too ill with the treatment life is good. I am 51 and plan to be around to watch my grandson (yes they know it will be a boy) grow up.

So I am enjoying my life at the moment. Please keep in touch. I normally post on the Ovarian pages as PPC is similar and there are other ladies on there with our cancer.

Love Tina xx

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Tina said:

"my cancer is chronic but it can be managed by chemo. I have accepted this and have found a new way to live with this illness. I am not longer scared as I have some idea of how I will die and know it is not as scary as I used to think. My mum died almost 3 years ago so I know she is waiting for me."

I've read a lot of your posts Tina because I was diagnosed one year after you (and, it seems, one or two others here) with the same cancer - though the oncologist doesn't want to commit himself to whether it is 'primary of unknown origin' or PPC. They found nothing at all on the original CT scans (and have done none since) He says it's not necessary so long as I'm responding so well to the carbo/taxol. They couldn't even find anything on the peritoneum itself - only in the fluid that filled it.

I know it's not usual, but I was accepting from the very start. As I have read through your posts, you seem to have shifted to a position of acceptance that makes me feel more comfortable for you. Being afraid, living each day in dread, won't change what happens, but I know that won't necessarily stop us grieving our losses. I'm just glad to find you more at peace and looking forward to the birth of your grandchild.

Best wishes,

AussieMaddie

stella65
Posts: 152
Joined: Feb 2011

Thank you diagnosed2009pg,( I don't know what happened with the posting time but I am most certainly tucked up in bed at that time!! ) I am afraid we only share the dog interest but I hope you are ok with that? Mum had her results today from her scan and bloodtest and has been told, the chemo has done it's job and they will see her again in 3 months for a further blood test, we are very relieved and I have cried buckets.... Strange that when mum had her diagnoses, chemo etc I managed to hold it together except in private when I would howl once in a while, usually in the middle of the forest with my dog! Today I am crying like a baby, I suppose it's the relief? Anyway, please keep us us updated on your progress and I will do the same about mum, I think we should all stick together to try and fight this monster!!

XX

diagnosed2009pg
Posts: 8
Joined: Mar 2011

Happy to hear your good news. Are you an only child by any chance? Keep me in the loop. Have a great day celebrating your good news! pg

stella65
Posts: 152
Joined: Feb 2011

Hi diagnosed2009pg, No I am not an only child, I have a sister who is two years older but we are very different in a lot of ways! I will keep you in the loop and I hope to hear good news from you soon X

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

(((((( Stella ))))))

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I was diagnosed in August 2010 and had 4 Carbo treatments and then surgery and then 6 Carbo/Taxol which I just finished 2 days ago. I have my scan June 2. I dont have a lot of confidence in the scans either because I had several before I got a definite diagnosis. I didnt have ascites or large tumor but much seeding. My symptoms were pain and constipation. I havent worked since August. I did ok with the chemo but 10 months of chemo has left me weak and I tire easily. I am trying to do a little more every day and it feels so good to be out playing in the dirt planting flowers. I kept busy during the winter with all kinds of needle work and volunteering for small jobs at the church etc..
It is my hope and prayer that we can all at least be treated for a long long time for this disease. I am always looking for longtime survivor stories. I know they are out there but are hard to find.
Tina....didnt you have a friend that survived a very long time? This board has been a God-send as not many people know about the disease and what we are up against. I am sorry we have the disease but glad we found each other for support.

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

Hi Lulu, yes I have a friend who was diagnosed with PPC stage 3 and it has been 4 years since she finished her chemo and she is still cancer free and very well. I met her when I was diagnosed as our husbands worked together. It was fate and we have remained really good friends.

Tina

diagnosed2009pg
Posts: 8
Joined: Mar 2011

My original symptom was a lump in my right pelvis that I brought to my medical doctors attention during my annual physical. I also memtioned it to my oncologist when I had a followup OV after 4.6 months in remission from breast cancer 2005. As I am self pay, my doctors were sensative to incurring additional medical expense and concluded from exam that it probably was a hernia, as I had had major surgery ( Transabdominal Breast Reconstruction in 2006 and even went so far as to see a general surgeon and schedule the hernia repair. I remeber saying to the surgeon that I had concerns having had a history of breast cancer tht it could be something else, but my comment was disregarded. Surgery was planned for December 8th 2010. In November I started to experience severe indigestion and gas and pain in the region of the "hernia" and after a weekend of pain, called my medical doctor. His PA could see me that day and per phone we decided to do a CT scan that day . (A God thing totally! }The results showed metastatic cancer in the omentum and ascites and suprise, the hernia was a tumor! I got the diagnosis of PPC following a parasentisis to biopsy the fluid. It was determined that it was not metastatic breast cancer but this rare PPC. Estrogen receptive, breast cancer was not. Moral of the story is to pay attention to your intuition and insist that your doctors listen to you. Expense should never be the deciding factor when it comes to your health! We were made aware of a state charity who have made it possible for my chemo rxs. I was in remission for 8 months following my original surgery and chemo Cisplatin/Taxol in 2009-10. I had a recurrence in February and am currently doing weekly rxs of Carbo/Taxol. Like you I have small bursts of energy but quickly am fatigued. I try to stay active until I can't and then I rest. Although it is my nature to be positive and I have given the outcome to God, I still have an occasional day or two that I lapse into self pity! Thankfully I don't stay there too long. The hardest part of this disease is the uncertainty. But I have definately learned to stay in the moment and grasp God's gifts of grace everyday. The reality is that none of us knows the number of our days, so it makes me want to make the best of every one! God Blesses you every day! peggy

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

You said
"I am sorry we have the disease but glad we found each other for support."

Yes.

You were diagnosed in August 2010. I started to feel something was wroing about that time, had my first ultrasound in September, taken immediately to hospital where it took about a fortnight to determine that I also had peritoneal cancer. None of the CT scans showed a thing, not even on my peritoneum. Then they took a sample of the fluid filling my abdomen and the results were very slow in coming back. Finally, they told me that what was thought to be an infection was, in fact, cancer.

We're all in there.

diagnosed2009pg
Posts: 8
Joined: Mar 2011

Not clear ... I feel ackward asking because your message only indicates diagnosis, but how is your Mom ?

I went to the site you recommended. Stories are heart wrenching, seems with this cancer there are no predictable results. I must trust in God's perfect result. I am praying for God's comfort and strength that comes from his character. May you know the confidence that comes from His faithfullness to His promises. Grace to you and your family through your circumstances. pg

birdwellv
Posts: 13
Joined: Apr 2011

I was diagnosed with PPC on Oct 2009 and had surgery 2 weeks later. They removed 5 tumors and ovaries, 12 inches of small intestine. Did 6 rounds of carboplatin/taxol and was in remission for 6 months. Cancer returned and started doxil in Jan 2011. I was also told I had ovarian cancer when diagnosed until I saw my gyn/onc who told me I had PPC. Haven't found to many women with this type of cancer. They have told me it is rare, usually goes into an organ and then called something else.

diagnosed2009pg
Posts: 8
Joined: Mar 2011

Yeah, that first recurrence is an eye opener isn't it? Are you still doing the Doxil? How often? I'm on a weekly chemo RX with Carboplatin and Taxol. Have 2 more cycles and then we'll see. I haven't had Doxil. Only Cisplatin, Carboplatin and Taxol. Did you do the IP? The most frustrating thing for me is the uncertainty. I've been told PPC is not curable, but can be treated. I think the reality is that we can pretty much expect to have recurrences and Rx. How are you handling the chemo? How does it impact your daily living? I pretty much have a few hours of energy and then I'm looking for my recliner! Try to keep things as normal as possible: love to cook, keep a clean house, play with the dogs, read, be creative, draw and water color, as energy allows. How about you?

birdwellv
Posts: 13
Joined: Apr 2011

Hi diagnosed,

I was really sick on carboplatin/taxol, every chemo I spent about 7 days in the hospital. This year in Jan I started on doxil and have not had the tiredness and nausea like the other chemo. The only drawback is the doxil causes some redness where my clothes rub and you have to watch being out in the sun. I did go in March to disney world and found some 110 sunblock at walmart and did not blister, so this is something I can control.

I was not able to work last year, but this year worked everyday except 3 when I had the flu and 1 day a month when I had chemo, I have a treatment every 4 weeks instead of 3 like last year.

What is your CA count since Jan. I have had mine go down to 22.7 which is good. I have a scan on the 27th of this month but have been told by my oncologist that doxil is a drug that can be taken the rest of my life. She hasn't come out and given me a time frame but has mentioned that when I get tired of fighting the disease we can talk about something else. I am fighting until I have no fight left in me.

You might talk to your doctor about the doxil because the one's at my center have handled it better than any other and I have not lost my hair with this one. Finally got it to grow back.

Here is my email address if you would like to email(nanavlb@bellsouth.net), I check it everyday more often than this site but will check more since I have found someone with my cancer. The center I am being treated at has all kinds of cancers but not like ours. I have been told it is rare.

Very nice talking with you,

Vicki

PS what is IP

diagnosed2009pg
Posts: 8
Joined: Mar 2011

Do I have it right? nanavib@bellsouth.net?

IP is chemo infusion directly into the abdominal cavity that washes the lining and organs in the cavity with chemo. It is not a intravenous infusion, it requires a separate port that goes directly into the peritoneal space. It could be quite uncomfortable as fluids over expand the abdominal cavity and you literally have to rotate your body every 15 minutes from side to back to side to front and change elevations with head up and head down. My oncologists offered it as an option and I thought it made sense to
attack directly. Supposedly added some benefits to prognosis.

birdwellv
Posts: 13
Joined: Apr 2011

looks like you put an i and it is a l try again please nanavlb@bellsouth.net

I would loved to talk with others who have the same cancer

I had a port put in the peritoneal space but they didn't think I could handle the chemo after surgery I was so sick. Finally this year they took out the port. I am on doxil at this time.

I will see the doctor Wednesday and will find out more.

Thank you for answering back.

I am in Tennessee.

Vicki

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

You said:
"I would loved to talk with others who have the same cancer"

Having been told from the start that PPS was rare, I've been surprised by the number of people here who have it, but to find them, you must look under "Ovarian Cancer" or "Rare and other cancers" as you find here. I've also looked under "Gynecological Cancers (other than ovarian and uterine)" to see if I could find some reference to PPC.

The references turn up everywhere.

That's why I'm voting, along with some others, to have a separate PPC board. It would be good to know where to go exactly when this subject comes up.

Look around the discussion boards and you will find others to shae with you.

Good luck :)

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

HI: I, too, have peritoneal carcinoma, but it is secondary having originated from gallbladder cancer. I had my gallbladder, its tumour, and part of the liver where the tumour protruded from the gallbladder, removed during surgery April 15/10. All that was left were a few nodules on the peritoneum and the omentum but the surgeon didn't cut them out as he hasn't had much luck doing that (worried about the microscopic ones he couldn't see). Anyways, I went on a cisplatin/gemcitibine treatment regime. It looked like it was working as the nodules did not show up on CT or MRI scans. But that wasn't real because they just were not identified until a final scan that showed them clearly - the radiologist went back through all the scans and sure enough they were there all the time. Anyways, I am now on a regime used by colon cancer patients - colon cancer can metasticize to the peritoneum as well and the regime they use for that is called FOLFOXFIRI - oxaliplatin, irenotecan, 5FU by infusion during chemo and for 46 hrs after with a pump, and leuco...something or rather. The oxaliplatin is another platinum drug but very very strong with quite astonishing side effects. So the treatment for peritoneum cancer seems to vary depending on where the cancer cells originated. I guess the Primary Peritoneum Cancer cells are comprised of tissue very much like ovarian tissue. So treated differently (but I still don't understand this!!! do the cells that arrive there keep their own identify???).

I would very much like to see a separate discussion board on this as I too think it is way more common than we're led to believe. It results 50% of the time from ovarian cancer so that is where most of the discussion has been.

Cheryl

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

I usually post on the Ovarian board. I have PPC and have now sent 2 emails to the administrator requesting a separate PPC discussion board. I have not had any replies yet so if you want to lobby and send a message too it might quicken upthe process.

Thanks Tina

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Tina: Yes, I follow your posts there, too. Can we call it something like Primary and Secondary Peritoneum Cancer as it seems to result from appendix and other gastro/GI primary cancers as well as ovarian and on its own? How are you doing? This 3rd round of folfoxfiri is much better because the oncologist reduced the amount of chemo and its infusion rate so most of the neuropathy is very slight and diarrhea hasn't happened yet (but I oh so crave an ice cold glass of water or a cold milkshake!). Can you give me a hint how to contact the Administrator? I'm not sure I see a "slot" for that. Thanks!
Cheryl

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

I sent an email by clicking on the "Contact CSN" in the top right hand corner. I can't understand why I haven't had a reply. I am OK at the moment, keeping my fingers crossed as I have my 6 weekly check up next Thursday.
Tina

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

I sent an email by clicking on the "Contact CSN" in the top right hand corner. I can't understand why I haven't had a reply. I am OK at the moment, keeping my fingers crossed as I have my 6 weekly check up next Thursday.
Tina

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Tina: OK, will do! I, too, have my MRI on July 6 - the one that will show (or not) whether the folfoxfiri regime is having any impact at all on the peritoneum nodules. I sure hope so!!!!! good luck with your check up Tina - let me know how it goes. Will be thinking about you.
Cheryl

Cdemaio
Posts: 4
Joined: Dec 2011

The PPC website is TERRIBLE! All the stories are about people who died in 12months! My mother was diagnosed 2 weeks ago, definitely a shock. She had no pain of any kind but then she felt discomfort during her last pap smear which is how they found it. She had an 8cm mass and two itty bitty nodules. The doctor said that he left her visibly cancer free after surgery and that he considered it a total success. We just received the pathology report and it showed no cancer anywhere except for in 1 lymph node of the 36 he biopsied. SHe said to her that this can be curable.....Thanks to her will to live and her perfect health (prior to this). She is raising my 7 year old niece so she has a lot to live for. So guys, tell me your thoughts....Can she beat this or are the chances of recurrence just so high? They said she is stage 11 (but borderline 3)
Thanks everyone!
Taylor

Chzwoman@yahoo.com

Cdemaio
Posts: 4
Joined: Dec 2011

The PPC website is TERRIBLE! All the stories are about people who died in 12months! My mother was diagnosed 2 weeks ago, definitely a shock. She had no pain of any kind but then she felt discomfort during her last pap smear which is how they found it. She had an 8cm mass and two itty bitty nodules. The doctor said that he left her visibly cancer free after surgery and that he considered it a total success. We just received the pathology report and it showed no cancer anywhere except for in 1 lymph node of the 36 he biopsied. SHe said to her that this can be curable.....Thanks to her will to live and her perfect health (prior to this). She is raising my 7 year old niece so she has a lot to live for. So guys, tell me your thoughts....Can she beat this or are the chances of recurrence just so high? They said she is stage 11 (but borderline 3)
Thanks everyone!
Taylor

Chzwoman@yahoo.com

Cdemaio
Posts: 4
Joined: Dec 2011

The PPC website is TERRIBLE! All the stories are about people who died in 12months! My mother was diagnosed 2 weeks ago, definitely a shock. She had no pain of any kind but then she felt discomfort during her last pap smear which is how they found it. She had an 8cm mass and two itty bitty nodules. The doctor said that he left her visibly cancer free after surgery and that he considered it a total success. We just received the pathology report and it showed no cancer anywhere except for in 1 lymph node of the 36 he biopsied. SHe said to her that this can be curable.....Thanks to her will to live and her perfect health (prior to this). She is raising my 7 year old niece so she has a lot to live for. So guys, tell me your thoughts....Can she beat this or are the chances of recurrence just so high? They said she is stage 11 (but borderline 3)
Thanks everyone!
Taylor

Chzwoman@yahoo.com

Cdemaio
Posts: 4
Joined: Dec 2011

Why did this post, post so many times? sorry guys

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