Primary Perintoneal Cancer

This is my story ... I was diagnosed in June of 2015 My primary dr was treating me for upper respiratory problems and thought I had reflux since January I had a bad cough , couldn't keep food down , loosing weight etc the beginning of June I went to the ER and had a CT scan they found a malignant tumor the size of an orange and my diagnosis " ovarian cancer Say what? I had a total hysterectomy in 2006 how is this possible?? A friend who just went through colon cancer told me to get a referral to Roswell Cancer Center in Buffalo, NY ( 3 hours from me) I got in that week they took all kinds of tumor marker blood tests and everything was negative except for perintoneal ( which symptoms are like ovarian) To mske a long story short I had 4 chemo treatments , surgery( tumor shrunk significantly ) and 4 more treatments afterwards carboplantin snd taxol My ca 125 went from 700 something to 24 in February of 2016 I have blood tests every three months and was normal range for sixteen months thus past June 125 was 135 in march it was 2 ... so another Ct scan showed a small area on my liver drs recommended to go. Back on the chemo I had for six treatments I go every three weeks for five hours after the first tx My ca 125 was 74 blood work was drawn before my second tx down to 39 had my third tx today snd will get results in a few days we know what treats my cancer and I am glad I'm being followed every three months is there anyone out there that has experienced the same thing? My only advice to women is not to only have PAP smears that's what my gyn recommended after I had the hysterectomy ( I did have precancerous cells but supposedly it was confined to the uterus ) my surgeon asked me why I had Pap smears cause there is "nothing there". Duh boy did I feel foolish so if I can let women know who had a similar experience demand a ca 125 blood test the test itself can show high markers and nothing wrong but in my case it's a pretty good indicator ... I'm learning more about my body now and learning how to ask questions .. stay positive Have Faith and let others help God Bless

10 Replies

  • Hi There,

    I was recently diagnosed with PPC after my discovery from having a kidney stone and a CT scan finding an "Omental Cake". I too had a total hysterectomy and had no cancer pathology from it and no family history. Finally it was staged as a low grade. This happened in March and I will complete my 6th round of chemo. I had an exploratory laparotomy with an omenectomy 4/4. Surgeon said she got all the stuff out she could find and it was very little from looking at the report. My CA125 started at 519 and is now at 23. I feel great and have been back to work full time for 2 months now. No one can really give me straight answers as what my prognosis will be because I don't think they know because I had no ovaries and it came back low grade(apparently it usually is high grade), and I have no family history of cancer. My feeling is stay positive and strong. Pray every day to your higher power and live life!...

    Peace and Love

  • Thanks for your reply ! I just felt like I was the only one who had experienced this I wish you well snd will keep you in my prayers , I felt great when I went back to work which is why it was so disappointing when something was found again My surgeon told my husband the when he did the surgery he got what he could see .,,thankbuou sgsin gor uour reply

  • Did you have ovaries?

  • NO that's what's so crazy ... I have co workers that had a total hysterectomy around the times I did I told them to have a ca 125 blood test instead of a pap

  • Hi dB , I was diagnosed with ppc in June 2015 ,I was shocked to say the least . I had the same treatment as you chemo , then op the. Chemo. I've had a couple of recurrences and had weekly taxol for eighteen weeks, finished that in December 2016. I was clear Inthe march but then my ca125started to rise. I am now on tamoxifen ,I see my oncologist every six weeks,the last couple of times my numbers have been rising again. Anyway he's told me to keep taking the tablets and will see me again on the 21st of this month. Fingers crossed the tablets will start to work. I agree with you ,I think everyone at some point should have a blood test for CA 125 , as with mine it's got to stage four. Sending you hugs from the UK and may God bless us with good health . Love Julie xx

  • Thanks Julie Keep the faith My dr talked about putting me on a maintenance chemo pill?? I will find that out in November on top of all this sept 2015 I had my yearly mammo and they found DCIS I had a breast surgeon from Roswell also and she did a lumpectomy but thank God it was stage 0 I'm on exmastane and get mammo every 6 months so far so good I was teste for BRAC and I'm negative when I go in November I'm also meeting with the genetic screening team it's a roller coaster but I trust all my doctors and it's in Gods hands and I know he will help me

  • Hi.I was diagnosed in 2014 with PPC.stage 3 c.CA125 1200.I had chemo,debulking,more chemo.Carbo/Taxol.Everthing looked good. CA125 was under 30.Reocurred in 2015 after 11 months. I had the same treatment.Carbo/Taxol.All looked good again.CA125 19.I am now at 2nd reoccurance CA 125 went from 20 to 40.I knew I was having another reoccurance because The CA125 is an indicator for me.I was stable for just a year this time..They did not do a CA125 at my last appointment.I am now on Carbo only.Hoping this does the work.I'm also braca negative. I do stay positive and live life......Travel more...etc.Take care...Lynn💙💙

  • Aww I know it's such a roller coaster my oncologist said since I was sixteen months cancer free that the chemotherapy works for me if it recurs four to six months out then they'd pick something different the recurrence was so disappointing and sll my fears came flooding back I'm trying to stay positive and have faith that with treatment it's going to be ok )))

  • My story is similar. I was diagnosed in Dec. 2012 with stage 4 PPC. My CA125 was 4880. I had Carbo and Taxol for 3 moths before bebulking surgery. My CA125 was down to 30 a month after surgery, and had chemo through June. I was in remission for 2 years, and halfway through 2015 my CA125 started creeping up again. I was then treated with Carbo and Doxil for 6 months starting in Jan. 2016. It didn't take long before my number was rising. And in June 2017 I started treatment for the third time. This time I'm on Carbo and Gemzar. It has brought my number down from 700 to 186 so far.

    I've been DNA tested twice, and the results show that I have a P53 mutation. And according to the internet: Most of these mutations change single amino acids in p53. The altered protein cannot bind to DNA, preventing it from effectively regulating cell growth and division. As a result, DNA damage accumulates in cells, which can allow them to grow and divide in an uncontrolled way to form a cancerous tumor.

    Currently my scans show that cancer is now hanging out in my lymph nodes. My onc said if I hadn't had a lymph node biopsy, it would look like I had lymphoma.

  • Hi again,

    I'd like to add to my other post that I strongly agree about having a CA125 test. Yes, it's not always an indicator, but if I had the test, and they knew my number was nearing my high of 4880, it would be a very strong indicator that something was terribly wrong. Then maybe I could have been diagnosed before getting to stage 4. Sending love and hugs your way.....


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