20 yrs BC Survivor, now has Ovarian Cancer

starzhere

Hi,

I was diagnosed with BC 20 years, ago at the age of 38.  At the time I was diagnosed at stage 1 er/pr-.  That was the only testing that was done at the time.   I have a strong family history of cancer on my father's side.

I was just recently diagnosed with Primary  Peritoneal Cancer that went to one ovary.  That ovary is only slightly enlarged and did not look significant on the ultra sound or CT scan.  Peritoneal cancer is cancer of the membrane that lines the abdomen.  It acts the same as ovarian cancer and it treated the same way.  

Those of you who have had your ovaries removed, because you carry the cancer genes, need to stay vigilant, since you can still get cancer of the Peritonium, which is linked to the genes.  Unfortunately, having the ovaries removed does not guarantee that you won't get Peritoneal cancer.  The symptoms are the same as ovarian cancer.  For me, it started in March with this strange feeling around my naval.  Then I started having the urgency to urinate.  I took antibiotics, which stopped the bladder urgency, but my bladder continued to feel tender.  Soon after that I started to feel bloated, which was the beginning of the fluid in the abdomen.  I had surgery in June.  Unfortunately Peritoneal cancer carries a stage III diagnosis.

Know your body and remain vigillant.

LISAMG

Starzhere,

I am horrified to hear of your awful journey and your story is a real eye opener for every woman at risk. Are you BRCA positive? Can you share anything about your CA125 at the time of diagnosis? How were you actually diagnosed? I am BRCA Un-informative negative with 2 other affected family members having BC and the other with OVCA, each also testing negative. We have multiple cases of BC/OVCA on both sides.

Thank you thank you thank you for sharing your warning with others. Women at risk need to be vigilant and aware of PPC despite removal of their ovaries as you mentioned!!! Sending you complete healing wishes for remission and a cure!

nancyluvspink

Hi - I am a two-time breast cancer survivor who decided to have a total hysterectomy in 2007, and a double mastectomy in 2008 (with reconstruction).  I did all this to hopefully avoid another cancer.  I did not know about the cancer you have.  I am very sorry for you.  I am BRCA 1 positive.  At my recent gynecologic visit, I asked if I had a cervix....I felt stupid that I didn't know, so she told me that I did not......I was so happy to know that I can't get cervical cancer either.  I wish you luck and send lots of hugs.  After 20 years, I am so sorry that it returned.  Nancy

starzhere

Lisa, 

My CA 125 was almost 4000.  I've, since found out that high CA 125 is a strong marker of Peritoneal cancer.  Also, indications of the cancer does show up on a CT scan, but not on an ultrasound.  What showed up on the ultrasound was a slightly enlarged ovary.  With Primary Peritoneal cancer there is little to no involvement of the ovaries.  The cancer is, however ovarian in nature, since the cells are ovarian. 

With me it started out with a strange twinge around my naval in March.  I thought it was the button from my pants, so I wore different pants and it seemed to go away.  Then it came back and the feeling went from my naval to either side of my abdomen.  At about the same time, I started feeling the urge to urinate a lot and my bladder felt tender.  I went to the doctor  and she said my urine tested postive for bacteria.  I took antibiotics for two weeks.  The urinary urgency went away, but my bladder still felt tender.  I started to feel heavy around my midriff, which was fluid build up.  I called my breast cancer surgeon and he scheduled me for a CT scan on Tues. and I had sugery on Thur.  This all happened in a matter of three months.

Lisa, thank-you for the healing wishes.  I accept them!

Elaine 

LISAMG

Elaine,

Thanks again for sharing your personal journey. How freakin scary the symptoms you've experienced.  Ive had my share of them with the urgency as well and some un-explained wt gain. Presently, I have a complex cyst on right ovary that has doubled in size & being monitored. CA125 is completely normal. My maternal aunt was diagnosed with ovca 2 yrs ago, stage 3C, and has been living on chemo all this time. She is BRCA negative too. I have ovca on my dad's side of the family as well. Her initial CA125 was close to 1000 on diagnosis. I also have a friend who is high risk and had a normal CA125 that doubled prior to her preventative surgery and ended up with stage 1 ovca. This disease sucks so bad without early detection being available. You mentioned 3 months...Is this the time period from when you initially noticed body changes to the time of diagnosis?? Thanks again for your help and getting the message out!! Stay well.

Best,

Lisa

starzhere

Yes, the time frame was three months.  From the time I first felt the feeling in my naval to CT scan.

Only three months of warning symptoms and I'm stage 3C.

Listen to your intuition.  When I had that feeling around my naval, I knew I had OC, but didn't want to believe it.

Elaine

Joy1

Hi,

I'm sorry to hear of your diagnosis of peritoneal cancer.  I, too, had two BC, one 12 years ago and one 10 years ago.  I see a gynecological oncologist every six months and am hoping she knows what to look for.  I try not to be neurotic but as a three-time survivor, I am afraid.  I hope so much that you will recover.  Are clinical trials being conducted using PARP Inhibitors in peritoneal, or only ovarian and breast cancer treatment?  Take care.  I will be thinking about you.