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my girlfriend

nyartist
Posts: 12
Joined: Aug 2011

My girlfriend just was diagnosed with Peritoneal Cancer through a CT scan done at Memorial Sloan Kettering. Her CA 125 was 35 a month ago and 51 yesterday. I am hoping that this is considered stage 1 but really don't know if the stages correspond to the CA numbers. She's scheduled for surgery Wednesday. Being that her CA was still relatively low is this a good sign or does it even really matter? She has had none of the symptoms I've read about: bloating, etc...

stella65
Posts: 150
Joined: Feb 2011

Sorry that you find yourself here, it is not a place any of us want to be but you will find lots of support and help here. My mum has PPC and she is stage 3, she only ever has CA125 of 30 and at the last test it was 13 after chemo, we are hoping it is still as low on friday when she goes for her 3 month check, some people just do not have elevated CA125 which is not very helpful as you cannot really use it so well as an indicator of how the cancer is behaving. Mum didn't have bloating or anything else for that matter, it was found whilst they were investigating a problem unrelated to the cancer, try to keep positive for your girlfriend, she will need your support and love X

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

On the positive side her CA125 is very low as you probably know. I guess she is stage 1 so her chances seem to be really good. Out of interest, what were her symptoms? Usually this cancer is not discovered until it is quite advanced and the numbers are really high.

Good luck to her for the surgery.

Tina xx

nyartist
Posts: 12
Joined: Aug 2011

Hi Tina - she really had none of the so called classical symptoms for this. The idea was to go to the surgeon and just say it was time to get her ovaries out. She's a breast cancer survivor and her sister died of ovarian cancer 7 years ago. But when her sister discovered her cancer she already had a baseball size tumor on her ovaries. One of my hopes was that because she had no symptoms and that her CA 125 was still relatively low that she was in the early stages of the cancer. But the woman who posted just before you mentioned that her mother had a low CA125 but still was in an advanced stage. So of course I'm a little confused. I'm sure these are questions I intend to ask her surgeon but any light you can cast on all this is certainly welcome!

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

I still think that if she has no symptoms it is a very good sign. My oncologist tells me that he won't put me back on chemo until I get symptoms again. No symptoms is usually good news.

My mum had breast cancer and because my cancer - PPC is rare and is linked closely to ovarian and breast cancer I was tested for the BRCA gene. I was positive and have BRCA 2. From reading your message I would hazard a guess that your girlfriend may have this defective gene. It may be an idea to get tested.

Having her ovaries removed is a great idea. My sister who is also BRCA 2+ has decided to get her ovaries removed. Let us know how she goes on.

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Tina...
I have been diagnosed as having surface (sometimes called serous) papillary PPC and have asked the doctor if I can have the BRCA test because I think it would be good for other members of my family especially if they have the vague symptoms of early PPC which are usually put down to irritable bowel and the like. There are no other females in my close family who have had the disease so far as I know, but my father had his breast removed when he was young. It was something he never talked about. His brother died from what I thought was liver cancer when he was 32. However, when I told my doctor, she said that liver cancer is rare and it was likely that the cells meta'd from another area of the abdomen. My grandfather on that side died from some kind of abdominal cancer too at 39 .. or so I'm told. I've filled out the relevant forms but my case will have to go through the Ethics Committee before tests can be done. Did you have to go through the same process I wonder? Also, what are the implications for you and your family that you now know that you're BRCA2? Glad that you are keeping well. :)

stella65
Posts: 150
Joined: Feb 2011

Please be reassured by Tina, she knows a lot more about this than me and I find myself confused about it most of the time, although my post is factual for my mum it doesn't mean that your girlfriend will be the same X

Best Friend
Posts: 222
Joined: May 2011

I guess maybe ur girlfriend is one of the rare woman who have this cancer caught early. When my mom went in for her surgery her number was 86,000. Now after chemo and the day of her surgery she said it was a 10. This made me super excited to hear.
Well, any questions I have, I come on here and ask the ladies or gentlemen. Take care.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

While she's in the hospital, your girlfriend can have massages or acupuncture or whatever from the Integrative Med group at MSKCC. I know that they helped me maintain my sanity when I was there! (Of course, with complications from Appendix Cancer, I was there for a month. My husband had all the Integrative Specialists and Psych come in to keep me grounded and moving forward, as it did get a bit depressing.)

Wishing her a straightforward, simple surgery and an uneventful recovery!

nyartist
Posts: 12
Joined: Aug 2011

I want to thank you two ladies for the comments. We went through a similar support group when Nancy had an acoustic neuroma. I want to know as much as I can, but it's clear that cancer changes the direction of one's life. I wonder how you ladies are doing in your recovery? What stage were you diagnosed at? How has the surgery worked for you? do you have to go back for regular CA125 test? - I would hope so. and most importantly what's the prognosis for having a life ahead to look forward to.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Mine was colorectal in origin - from Appendix Cancer. My CEA (colo-rectal marker) is tracked, but was never elevated. My CA 125 was never elevated, as this was neither ovarian or uterine in origin.

I was stage 4 - the appendiceal tumor encompassing my ovary ensured that staging, tho there was also tumor on my peritoneum, omentum, and outside of my colon.

I would have to say I've made a full recovery, and have an excellent long-term prognosis. There are some residual issues from chemo and all the surgeries I had, but they are fairly minor, and don't stop me from kayaking, bicycling, curling, traveling, living. It took a couple of years of hell before life resumed, but now I'm back. I'll be enjoying my son's wedding next month, and am planning to dance at my onc's son's wedding some day in the future. (His son was born when I was diagnosed - we're in no hurry to marry him off!)

Wishing you the same good fortune,
Alice

nyartist
Posts: 12
Joined: Aug 2011

Hi Alice

I really liked to hear about the kayaking, bicycling, curling, traveling, living. one of the problems is to recognize that life is still there to be lived.

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Hi nyartist. I hope you find this board helpful. I've found it very reassuring to know other people who are going through the same thing as me. I'd rather none of us had the disease, but we have and knowing there are others who understand me and allow me to discuss things I hardly talk through with anyone at home, gives me a lot of comfort.

The CA125 measure is not a very good one in relation to diagnosis of the disease. It can give both false positive and negative readings. This is because sometimes other conditions can put the reading up such as uterine fibroids and infections. However, in my case, I did have advanced PPC when I was diagnosed and my CA125 reading was 15. The blood sample was taken when I was in hospital with a bowel blockage and moved downwards to 9 a few weeks later. My last reading before chemo started was 5.

I'm told that it's sometimes a good indication subsequent to diagnosis. So, for example, if the initial test was 10 and the latest is 250, there might be an indication that the cancer is back. On the other hand, it might not mean that after all.

My cancer is microscopic and doesn't really show up on CT and there wasn't really anything out of the ordinary about my CA125 either. Up to 35 is within the normal range so far as I know. My doctor has told me that the best indicator for me might be simply how I feel.

I hope this helps by way of explanation. :)

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