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Primary Peritoneal Cancer

Best Friend
Posts: 222
Joined: May 2011

Hi-
This is the first time I am writing. My 62 yr. old mother was just told she has Primary pappilary serous peritoneal carcinoma. I think this is how you say it. It starts in the ovaries. Her ovaries are swollen but it is not present there. It is on her omentum, a little in her stomach, some in her colon, some touching her spleen, also some on her liver. Very scary. She felt she had cancer for a long time but they took forever to find it. When they finally did we were shocked to hear just how far it spread. But doctor said hers is slow moving so she could have had this for years.
We were going to go to Cancer Centers of America but it just seemed to much. Three days driving to Philly. She did not want to have treatment there. So, tomorrow we go to the University of Penn for our secong opinion. She wants to stay close to home. Our local hospital is affiliated with Penn. It is just a mess. I know this is a tough cancer which has basically one of the worst mortality rates. I cannot see her recieving chemo constantly just to keep her here two years suffering. Yet i cannot let her give up.
They are not doing surgery first which i find odd because every other story i read involves debulking first, then chemo. He said he is trying to shrink it for surgery or maybe she will not need surgery. He is puttong her on carboplatin and taxol.
Has anyone ever heard of Hipec? Why is it only certain hospitals that use this technique? It does not seem that difficult.
Anyway, this is new for me and for her. Right now i am ok but it feels so hard to always act like everything is just sunny. I need some positive outcomes to make me feel more hopeful.

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

I am so sorry to hear of your mothers diagnosis and sorry we had to meet here but you will find much support and info here.
I have about the same story as your mom. I had much testing and they couldnt find anything till Aug 2010 when I was diagnosed with PPC. I finally was diagnosed at Cleveland Clinic and I had 4 rounds of chemo (Carbo) before surgery. I might add that my cancer was across the abdomen and in the colon but no other organs. I was planning on the Hipec but by the time I was ready for surgery the cancer had shrunk so much he was able to do robotic surgery and get me back to chemo faster. Only minute bits of cancer was left at time of surgery. Had I had surgery before chemo they were promising me a colostomy. After surgery I had carbo and Taxol and have been doing well with only minor bumps in the road. I have one more round of treatments to go but I can tell you I am on vacation in Arizona and was in DC last weekend.Chemo has its challenges but they have good drugs to help you through and although the prognosis is not good I and your mom just may be the ones who beat this....I know the terror you are feeling but take it one day at a time and make each one the best it can be. Many hugs to you and your mom.

Linda

Best Friend
Posts: 222
Joined: May 2011

Hi-
I have looked up so much on the internet and you really only read the bad stories. I know that you should always have faith. I try to make her life seem as normal as possible. I even took off work for the next three months to see her get through her first rounds of chemo. She only gets one every three weeks which does not sound like alot. Also, I am relieved to hear that you had chemo before the surgery. You have given me so much hope. I cannot thank you enough. I have become an emotional wreck so of course even your letter makes me cry. Thank you and I hope to hear from you soon. Keep me posted on how you are doing! It sounds like you are not one to cave in to all these horrible statistics. You can help many people.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi Best Friend
Sorry to hear of your mother's diagnosis. If cancer is indeed a low grade (slow moving would indicate this) time is on her side for treatment. Newer studies indicate when cancer has spread throughout like your mother's it is more beneficial to delay any surgery and begin with chemo to shrink the cancer. This apparently leads to fewer complications and better survival from surgery. Carbo/taxol is still the gold standard first line chemo treatment. HIPEC is a relatively new treatment but quite complicated. Someone on the uterine cancer board who has papillary serous uterine cancer with similar spread issues underwent this. It involves first removing all visible cancer from abdomen and then filling abdomen with a heated chemo solution. The heat enhances the effect. The surgery is lengthy and recovery is longer. At least a 10-day hospital stay. It was first developed as a treatment for pancreatic cancer and is now being used for others. I also have the uterine papillary serous cancer with no real presence in the uterus, mainly spread throughout the abdomen.

Chemo treatments today can be managed fairly well with pre- and post meds to reduce side effects. It is a very personal decision to choose whether to treat or not. Quality of life vs. quantity is something no one else can decide for the patient. Also, any statistics you may find on the internet and also still presented by many medical professionals are historical and do not reflect more cutting edge treatments, new drugs, and new ways of using and combining for optimal results. I was Stage 4 at diagnosis nearly 3.5 years ago, just back from my little 2 mile morning walk, did my longer 3-miler on the weekend, and the next day a 10+ mile bike ride - so don't bury us cancer patients too soon ;-)

Keep a positive outlook ... your Mom does not have an expiration date.
Annie

Best Friend
Posts: 222
Joined: May 2011

Hi Annie-
I am really going to start trying to have a better outlook on things. It sounds like you have more energy than most teenagers. I could use some of your energy. 3.5 yrs. is amazing. I think we will start chemo next week. I will keep you posted.
Thanks Again,
Best Friend

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

Hi best friend .

I am the daughter of a great mum who is only a few years older than your mum , she was diagnosed with PPC last may.
It is good your mums is slow growing, I hope this will give you more time with her , and remember despite all the statistics there is only one statistic that matters to you your mum that statistic is 100% . There are women who make up the a good part of the stats why not your mum?
This journey will get easier, the first few months are terrifying , I remember them well , I have found a bit more peace with all this now, I still get emotional it's human nature.
I agree with the other responses, chemo is not a bad as you think , my mum actually sailed through carbo taxol I hope your mum does to.
If she does get side effects they have some really wonderful drugs to help combat them.
My mum did 3 rounds of chemo before she was operated on .
Take the best treatment and oncologists you can get, you can never live to think what if then.

(( hugs ))

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

Best friend , I have bumped a post about slow growing PPC for you to read, it was posted by Linda. Under good news for PPC warriors.hope this helps Xxxx

Best Friend
Posts: 222
Joined: May 2011

Yet another good story. I hope everything works out for your mom. I am just glad to know that i have people to help me through this. I always feel guilty for being upset because i think of how she must feel. Thank-you so much!

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

I am sorry to hear about your mum's diagnosis. I too have PPC and was diagnosed Nov 09. My cancer is all around my peritoneum like tiny specks of sand and has spread to the lining of my lungs. My cancer weeps fluid around the lungs and causes me breathlessness. I am in the UK.

The beginning bit is very scary because it is a shock and everything is new and you all need to get used to this scary prognosis. You will get used to it & so will your mum. After 16 months I just have a new way of thinking about my life and I am learning to live with it.

I have had 2 cycles of the same chemo your mum will go on. It worked really well for me and reduced all of the cancer cells and got rid of the fluid around my lungs. I couldn't have surgery because the cells are too small but the chemo works for me. I used tpo have 4 - 5 days after the chemo where I felt a bit nauseous and tired - bone tired. But I was given anti-sickness meds that worked a treat.

This is a slow growing cancer and we all know it can't be cured. I am an optomist so I have learnt to view my cancer as a chronic condition that can be managed with chemotherapy.

Please keep us in touch with how things go for your mum. Love Tina xx

Best Friend
Posts: 222
Joined: May 2011

I like the thing you said about your cancer being a chronic condition. It is very true. If you can deal with all the chemo and such which i am sure is terrible than you can live with this disease. It's not cureable but it is very treatable.

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

That's the spirit Hun, try and keep your chin up , it is tough , but it will get easier, you will come to terms with this awful nightmare. Keep us posted on your mum xx good luck to her xx

esjpedsrn
Posts: 7
Joined: Sep 2009

Dear Best friend
I was 38 yrs old when I was diagnosed with PPC in May of 09. The cancer was in my omentum, on all female parts, and on the sigmoid colon. I had the cytoreduction with the hipec at the University of Cincinnati Hospital in Aug. 09 I have been great since. The surgery lasted about 7hrs and I was in the hospital for 7day (I think 7 was my lucky number) not really just had the Lord in charge of things and he provided. I am going back next week for my routine ct scans. I just wanted to share a little part of my story to let you to stay positive and don't believe everything online. There are some scary stories out there, just know that everyone and every situation is different. Just tell your mom she has to make whatever treatment decision is best for her. Good luck take care and God bless.

Best Friend
Posts: 222
Joined: May 2011

I have been reading alot of things on Hipec but my mom is having chemo before even thinking about surgery. I don't know. The University of Penn doctor said she would do surgery first. She said to get the chemo and than if we wanted to do the surgery there she would be more than glad to talk to us. It is a great hospital and they do things different like putting the chemo into the stomach. It's just horrible because like you basically said everyone is different. I read this, I read that. It comes down to trust really.
Yours is a wonderful story and i hope my mothers is quite the same. Take care and thanks so much!

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