Ppc cancer /chemo

Hi,

I am 39 years old and was recently diagnosed with stage 2 primary peritoneal cancer. I am looking for others who are in the same boat. I am BRCA1+. I do not mind talking to women who have or had ovarian cancer, however, there is a difference between the 2. It is discouraging to come on this website and not even see a drop down box with Primary Peritoneal on it. It's rare, it's treated like ovarian, but it would still be nice to raise awareness.- I get tested with the CA125 blood draw along with a transvaginal ultrasound & pelvic ultrasound. The only thing that picked it up was an elevated CA125.

The initial diagnosis was good: the ovaries were clear. But there was evidence of other, unexplained tumours. Liquid in the omentum. Ascites. Peritoneum. With each new week it seemed a new, strange and thoroughly unwelcome word was being discussed. Finally they found tumors on my left ovary - I have had the left ovary and Fallopian tube removed. They thought at first this was the only problem until they found there is still liquid in the peritoneum and Omentum- I am now on my 6th cycle of chemo - and the liquid is still in these areas - curious if anyone else has had similar scenerios.

Hope to hear from some of you soon. I am on cisplatin and taxol.

8 Replies

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  • I used to feel upset about the lack of awareness of PPC. However, now it's thought that many women with Ovarian have, in fact, Fallopian Tube cancer. The same goes for women with PPC. Also, it's thought that many women with Ovarian have PPC and vice versa. Essentially, the cell is the same, coming from the same embryonic origin as we develop in our mother's womb.

    Doctors make the diagnosis of PPC depending on how much the ovaries are involved. I had had my ovaries removed some years before diagnosis, but after that, I had a huge cyst adenoma removed of Ovarian origin. Doctors think it grew from Ovarian tissue remnants. Now it's known that Ovarian cancers can develop in a stepwise fashion from these in some cases.

    My own abdomen is bloated too at the moment and I have a dwindling supply of clothes to wear if I want to avoid scaring the neighbours!

    Having cancer can be a shocking experience and being given a rare name for it can add to that. On this site, there are many women with PPC, and there is no difference to the welcome as, essentially, PPC is Ovarian for all intents and purposes.

    So, anyway, a warm welcome Sibby. xxx

  • One thing I have learned from this site is whatever it is called we all re-act differently both physically and emotionally. I too have PPC or do I? It is nearly a year since my last chemo which was my first, after diagnosis and two lots of surgery. Five weeks until my next check up and getting everything crossed. It seems as though if ovaries and other bits are clear then it must be PPC. I am not sure if friends with Ovarian develop ascites to the extent that we do. I don't think I have ascites. Like everyone I find it very hard to know which symptoms might be cancer related and which might be getting old, effects of over eating/drinking, bugs going round etc. Fortunately, I have a great GP who is very supportive in helping me manage any symptoms I may have. I do hope the treatment goes well and that the specialists can deal with the ascites. Val x

  • Hi Sibby21.Wecome to the group.I have advanced stage 4 O.C with peritoneal involvement.Which came 1st,I'm not sure.I had over 2 stone of malignant fluid in the abdomen.I was diagnosed last Sept and had 6 cycles of carbo/taxol, no surgery and I'm now on Avastin.If there's one bit of advice I can give you it's this,Don't Google your illness as sometimes what you read takes away your positive attitude.Dont be afraid to question your Onc.Well done you for coming on here and telling us about your illness and worries.x x

  • Hi Sibby. I am also a member of this exclusive PPC club. I was diagnosed with stage 3 in 2011 . There were no tumours but it was explained this cancer consists of small seeds of cancer in the peritineum and I had 8 litres of ascites removed by draining before a 6 month course of carboplatin and taxol every 3 weeks. My ca125 was 8000 and reduced to normal levels by end of treatment. I am checked every 3 months by either the oncology team or gynaecologist.

    I used to get upset that we were all lumped together with OC because it is a different and rare cancer despite the similar symptoms and treatments. Anything you read about this cancer will usually start by saying it is nearly always diagnosed at stage 3 or 4 so you are really lucky to be found at an earlier stage. This forum is very good and helpful and you will find more of us like AnnieH who are very positive and inspirational. The very best of luck in your treatment. I may be wrong but I think the reason there is no separate forum is that there are too few of us. In Ireland only about 10 to 15 women a year are diagnosed and I am not sure what the statistics are in the UK. Take care XXX

  • Hello Sibby, I'm sorry you've had cause to join the site- there are quite a few others on here with PPC diagnosis- if you put PPC into the search box (top right) and then choose Ovacome and Ovacare to narrow it down you'll see some other posts! Best wishes to you, Sx

  • Hi Sibby, I have Ovarian Cancer but I had spread to the peritoneum, my surgeon and the oncologist described it as looming like a snow storm. I had lots of ascities too. I think quite a lot of things about this disease are the same for us. I have 2 friends, both of whom were diagnosed with PPC and I know from talking to them, their treatment was the same, their feelings etc were the same too., in effect not much difference. Welcome to the forum. Good luck with your treatment. Ann x

  • I am very interested in this subject as I was diagnosed with Stage 4, Peritoneal/Ovarian cancer, in the ER, June 2014 (age 57). My medical team, for whatever reason, is more focused on the Ovarian issue, possibly due to insurance coverage for me (?). I was told that since there was not a tumor to biopsy, we do not know the origin. I had a CA-125 #@6,000. I had lots of acites, large amounts of fluid removed around my lungs, MANY tmes, before weekly Taxol and Carboplatin became effective. To date-my CA125 is stable, below 10, it did reach a low of "4" at one time. I'm NED, no sign of tumors; pathology report was negative after full hyst. I have chosen maintenance chemo, after my June 2015 hyst (just Taxol every 21 days, until I've had enough, or there is evidence of more cancer I guess).

    I also had a CyberKnife procedure to blast a tiny tumor in my right lung, March of this year.

    I'm a bit "baffled" and just very interested to see more about PPC. My experience has been exceptionally good, I'm very thankful, but I'm interested to see more about this.

  • Hope you are doing better! I am BRCC2 +! Found after I had total hysterectomy. They only found cells I my fluid that they send to pathology,which is done after all surgerys..then another surgery too go in do biopsieson all internal organs and and lymnodes..thank God Nothing!! But am being treated with chemo like full blown peritoneal cancer! God bless you! Hope they cure your cancer. I feel very upset for along while now I am thinking how lucky and blessed for my early rare detection of this cancer o had never heard of! God Bless!

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