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Can we change our fate?

F430girl
Posts: 1
Joined: Dec 2013

My beautiful mom passed away last night from PPC. I am stunned with grief as well as fear. I feel like there is nothing we can do to catch this disease early. Her sister and aunt also had PPC. I am frustrated there is no stage l or ll because there isn't any test or warning or possibly visible cancer at those stages?

I only found out the details of my mom relatives' diagnosis two weeks ago and only because I started asking questions! I had no idea we had such a strong genetic history as no one in her family knew of BRCA. They had no idea cancer could run in families.  I wish I had asked these questions when mom first got diagnosed.

I have had gas and bloating for over a year now and thought it was a digestive problem. I have an intravaginal ultrasound next week. I have four children and of course after just losing my mom I am so sad and scared.

My question is this: does knowing my risk is very high change my fate? At best the scans and blood tests are hit and miss. How can my sister, daughter, and I monitor ourselves to catch this before stage lll?  

Thanks all.

LM

 

seatown's picture
seatown
Posts: 242
Joined: Sep 2012

I sympathize with how you feel.  You need to hear from someone with far greater knowledge than mine--but it's my understanding that the CA-125 blood test is quite reliable for detecting PPC and ovarian cancers. I believe I read somewhere that elevated CA-125 levels correspond to the diseases at a level of 90% or more. With your family history, I would guess that your doctors would want to monitor you and your family very closely and would be willing to do frequent CA-125 tests. I know when I was diagnosed with PPC about 18 months ago, my oncologist wanted a detailed family history, including any cancers. 

Good luck with your testing. And my sincerest sympathies on the loss of your mother. I hope the memories you have of her will help you heal. Thinking of you.

Rosamond M
Posts: 86
Joined: Apr 2013

Dear LM,

I also have PPC and have a close relative (my mother's sister) who also had this disease.

I took my daughter to my last gyno/onc. visit and he told her she should make an

appointment with the genetic team at our large local hospital. He said he could not

give her a certain answer but that it was possible that she could only have 1 in 100

chance of getting my diagnosis and a much bigger chance of getting breast cancer as

it is more prevalent! He did advise she made sure she had a CA125 blood test and vaginal

ultrasound every 6 to 12 months. However, this may not be the protocol in the US as we are in Australia.

You have my sincere sympathy for the loss of your beloved mother.   

Nflinchum
Posts: 74
Joined: Jun 2012

Hi LM,

I am so rry for the loss of your mother.

I also have PPC Stage IV and I am a 2 year survivor.Mine came back after 7 months of remission so I am taking treatments again. I agree with Carole seems like the best test is the CA 125 test. Good luck and you are in my prayers.

Nadine

stella65
Posts: 152
Joined: Feb 2011

I am so sorry to hear of your mothers passing, I lost my mum April 2013, I still keep going over things and wondering if we could have done anything different, it is so hard.  Re the CA125..... My mums onc only ever mentioned it if we asked, she said they were relying a lot less on it these days, going more on symptoms, examinations and scans, I totally understand why you are feeling so worried about your own symptoms but it is very likely that you do have digestive issues due to the stress of your mum being so poorly, I hope the ultra sound puts your mind at rest, I am sure considering your family history that you are all entitled to regular checks ( whatever your doc sees as appropriate)  I have a friend who is routinely checked for Prostrate cancer, he has just had a scan which has shown something and he is going to have a biopsy, this is all because of family history, if he didn't have family history he would probably be unaware he had a problem as he wouldnt be having the checks, so yes I would say your knowledge can change your fate, you must make sure you push for what you want, I am in the UK so things are probably different here?  Take care and keep us updated X

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