CancerCompass message board discussion started by Desiree on 1/8/2007 http://www.cancercompass.com/message-board/message/all,8704,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have to say that although I spent most of my time crying while reading everyones experience (either self or family member), this message board has perhaps opened my eyes a bit wider than most of the dated materials I have been able to find.  My mom too, was diagnosed with Primary Peritoneal Carcinoma on November 14th, her 65th birthday. My entire life and the losses I have experienced never prepared me for a situation like this.  I always thought I would be in my late 50's or 60's when my mom would require me to become her caregiver.  Instead, at the age of 38 I can honestly say that I am absolutely terrified of her long term prognosis.  I felt that life had dealt enough bad to me that there was no possibility for any more losses.  My father died just a little over a year ago from Squamous cell Carcinoma.  My grandfather died in 1998 but was a 9 yr. survivor to Prostate Cancer.  My grandmother died 20 years ago to uterine cancer.  It's all I have left aside from two Aunts (one I really don't even know or have seen in 26 yrs) and one brother.  At first I could not even begin to phathom that this was even happening.  Then I was in denial that it really could not be happening all over again in life.  Then I came to this realization that reality is what it is and if God didn't think we could handle this, he would not have dealt us this hand.  Until finding this website and reading everyones experiences and situations I was honestly unsure of what to expect.  The medical oncologist provided a prognosis of (8) months.  I see that some people have far exceeded that with their own experiences.  The records or information I can find is so vauge and referring to ovairian, I've been overwhelmed with dismay.  My mom too, had a debulking surgery only (3) days after the consult.  Today was her second chemotherapy session.  She is a day or two away from her hair loss, so we are going to get it buzzed since she already has one of her new wigs, compliments of her sister and a second on its way. This is so tramatic to her and I feel so damm bad.  We have good days and bad days.  I just wish I could make it all go away.  What I found it very intersting was that most of you have posted a note of having a tumor removed and no one mentioned what was explained to us about her cancer.  Yes, her belly began to swell and she went to the doctor and they ran the CA125 initially...  But when she had the surgery, the gynological oncologist explained that her "primary peritoneal" was "sprinklings" throughout her abdominal cavity not "a" tumor.  I am really wondering why these sprinklings were such small tumors that they could not be surgically removed, then will they truly respond to the chemo.  I also wanted to say something about the postings referring to "thinking positive".  I appreciated your insights and have to agree that it is really important to my mom talk and vent.  It's really hard to tell someone to think so positive and find myself crying in the shower, in the car and going to sleep at night.  I only talk to my one Aunt about my feelings and cry to her constantly.  She deserves to feel for herself and not be my only support.  I'm afraid to share with my husband, my best friend because of what burden this has put upon him with our household.  He has handled everything and anything; but most importantly, my children and their well-being.  Any suggested support groups for caregivers or daughters? Desiree Mon, 08 Jan 2007 00:00:00 GMT hi! i guess we all had tumors & sprinklings! we all hope the chemo zapped them! how is your mom? i dont understand why she was only given 8 months? that sounds very conservative: we all hope for 2 yrs+!i guess u should hope that the chemo helps ,& cherish your moments together; personally i have accepted my own probable demise & just hope i can survive as long as poss.! right now i feel like my old self!so, just be around, try & get her interested in something that can absorb her (hobby etc): i have managed to compartmentalize my brain & tucked the oc in the tiniest section! try not to think about it!regards, harriet Harrietg. Fri, 23 Mar 2007 00:00:00 GMT  On 1/8/2007 Desiree wrote:I have to say that although I spent most of my time crying while reading everyones experience (either self or family member), this message board has perhaps opened my eyes a bit wider than most of the dated materials I have been able to find.  My mom too, was diagnosed with Primary Peritoneal Carcinoma on November 14th, her 65th birthday. My entire life and the losses I have experienced never prepared me for a situation like this.  I always thought I would be in my late 50's or 60's when my mom would require me to become her caregiver.  Instead, at the age of 38 I can honestly say that I am absolutely terrified of her long term prognosis.  I felt that life had dealt enough bad to me that there was no possibility for any more losses.  My father died just a little over a year ago from Squamous cell Carcinoma.  My grandfather died in 1998 but was a 9 yr. survivor to Prostate Cancer.  My grandmother died 20 years ago to uterine cancer.  It's all I have left aside from two Aunts (one I really don't even know or have seen in 26 yrs) and one brother.  At first I could not even begin to phathom that this was even happening.  Then I was in denial that it really could not be happening all over again in life.  Then I came to this realization that reality is what it is and if God didn't think we could handle this, he would not have dealt us this hand.  Until finding this website and reading everyones experiences and situations I was honestly unsure of what to expect.  The medical oncologist provided a prognosis of (8) months.  I see that some people have far exceeded that with their own experiences.  The records or information I can find is so vauge and referring to ovairian, I've been overwhelmed with dismay.  My mom too, had a debulking surgery only (3) days after the consult.  Today was her second chemotherapy session.  She is a day or two away from her hair loss, so we are going to get it buzzed since she already has one of her new wigs, compliments of her sister and a second on its way. This is so tramatic to her and I feel so damm bad.  We have good days and bad days.  I just wish I could make it all go away.  What I found it very intersting was that most of you have posted a note of having a tumor removed and no one mentioned what was explained to us about her cancer.  Yes, her belly began to swell and she went to the doctor and they ran the CA125 initially...  But when she had the surgery, the gynological oncologist explained that her "primary peritoneal" was "sprinklings" throughout her abdominal cavity not "a" tumor.  I am really wondering why these sprinklings were such small tumors that they could not be surgically removed, then will they truly respond to the chemo.  I also wanted to say something about the postings referring to "thinking positive".  I appreciated your insights and have to agree that it is really important to my mom talk and vent.  It's really hard to tell someone to think so positive and find myself crying in the shower, in the car and going to sleep at night.  I only talk to my one Aunt about my feelings and cry to her constantly.  She deserves to feel for herself and not be my only support.  I'm afraid to share with my husband, my best friend because of what burden this has put upon him with our household.  He has handled everything and anything; but most importantly, my children and their well-being.  Any suggested support groups for caregivers or daughters?Hi Deseree:I am responding to your old message as I already responded to your newest one. I just read this one a second ago. I think you and your mom need to find a support group. I found one and they are great. You learn more from them than you will the doctors. They don't feel sorry for you, but help you deal with your mom's cancer. The satistics are out there for a lot of people to fully recover when the doctors have given death sentences. I believe it is up to you and your positive additude to survive. Buy the book LOVE, MEDICINE & MIRACLES. By Bernie S. Siegel. Great book!!!!Hope this helpsTasha  Tasha Thu, 29 Mar 2007 00:00:00 GMT