Peritoneal cancer with no visible disease

[sunnyside3]

Hi everyone. I’m new here and am looking for information to help a close relative. She’s been given a diagnosis of primary peritoneal cancer. She presented with a pleural effusion and the cytology showed malignant cells consistent with an ovarian, tubal or peritoneal primary. However, there was nothing else on her CT scan. She’s had 6 rounds of chemo and her CA125 is now normal and still nothing on the CT scan, apart from the pleural effusion which is still present. The next stage is surgery, but the surgeon is being rather evasive, saying no one knows if surgery would be of benefit as she doesn’t have ‘bulky’ visible disease. She’s decided to have a laparoscopy to get more information before making a decision. Has anyone been in this situation with peritoneal cancer? Apparently it’s quite rare so we’re trying to get a second opinion.

[N-A-58]

similar ish story here. My mum had 3 ultrasounds and a Ct scan show as clear. They did a lap and found stage 3 cancer. Took ovaries and tubes then. 2 weeks later did the full debulk surgery. They were able to remove it all in the 2nd op.

[sunnyside3 in reply to N-A-58]

Hi. Many thanks for your reply. What symptoms did your mum have that led to them doing the ultrasounds and CT? Did they suggest it might be peritoneal when they couldn’t see anything? When they did a laparoscopy could they actually see cancer in the tubes or ovaries or was it only found under microscope later? Sorry for so many questions - we’re just feeling a bit isolated at the moment and in need of answers.

[N-A-58 in reply to sunnyside3]

Hi, she had constant nausea, urinating a lot and tiredness. Her ca125 was also raised at 133. They literally didnt see anything. Her surgeon suggested the lap as he said the cancer starts in the tubes and so taking them out would allow them to be biopsied. I suspect they thought she had it but were surprised it was stage 3. After the lap they knew she had cancer, they thought stage 2 at that point. After the debulk surgery 2 weeks later they found microscopic cancer in her omentum which pushed it to 3A.

I would push for the lap at least. Let them see what’s going on. I hope this helps.

[Mrs_Thomas]

Good morning, alittle different but I had nodules on my peritoneum. I also had disease that wasn’t all picked up on CT. I think having a laparoscopic biopsy is a great idea, that’s what I had! Because they can physically see what’s going on. Also you will find that the surgeons will be abit cagey becasue until they fully know what’s going on they don’t want to give you misinformation. So after the biopsy they will be able to give you a more informed idea of what’s needed, I hope this helps xx

[NewtonEmma1900]

My situation was not identical. I was diagnosed Stage 3c primary peritoneal cancer in Oct 21 after I initially presented with abdominal pain and swollen belly; which proved to be ascites fluid. Chemo and total debulking surgery followed, initially I responded well but then my ca125 test was rising yet the ct scan did not show anything. I was subsequently sent for a PET scan which revealed spread of the disease to some lymph nodes. On a more positive note I have responded well to 2nd line chemo and have just started on a maintenance drug. I would suggest asking for a PET scan. Good Luck

[Mai46]

hello there - the cancer presents itself in a similar way for me. I have PPC, dx Oct 2020. They couldn't see anything on the ultrasound or CT except fluid (they were really baffled!), but when they did the laparoscopy, they saw cancer (tiny tumours, and I believe nodules) spread throughout my abdomen, omentum etc. Then they did the debulking op (in Germany, where I was at the time, it's done before chemo). I also had significant effusion and ascites before and after the operation, which did decrease, but then came back with a vengeance when chemo started (which eventually got rid of it).

You absolutely need a second opinion on this, and insist on a PET scan for her- don't be afraid of being pushy. It seems very strange to have malignant effusion remaining, if she has responded well to the chemo and her ca125 is within normal range, because cancer growth causes the effusion. Can they explain this? And has ca125 always been reliable marker for her? Also, if they won't operate maybe they could put her on Avastin, which would at least help control the fluid (and possibly the cancer) - but obviously this is not an expert opinion

I hope you can find a good solution to this problem- it must be very stressful for you and her. Sending all my best.

[Alice77]

I have primary peritoneal cancer. I rang my GP as it was in lockdown that I developed bloating and pains in my stomach. She immediately arranged an ultrasound and an appointment with a gynaecologist. The latter was unsympathetic and said there was no evidence of ovarian cancer and that she could not detect any serious bloating. She did suggest a CT scan because my CA125 was high and because of my age. The scan showed peritoneal disease and two months afterwards laparascopic investigation led to a stage 3C PPC diagnosis. After six cycles of Carboplatin and Paclitaxel chemo which was effective, I had ultra radical cytoreduction surgery, which included removal of lymph nodes and Omentum, followed by two more cycles of chemo and have since been in remission and taking Niraparib. The time from when I first reported symptoms to the last chemo session was 13 months. No doubt the shortage of critical care beds because of Covid meant a delay of about three months in getting to the surgery stage. I have never had a PET scan but a friend with cancer which caused breathing difficulties was sent for one. Primary peritoneal cancer is supposed to be very rare (the figure I read was six cases per million) but the number of women diagnosed with it is increasing.

[Carsok]

Your story hit home. The last week my husband has been feeling exceptionally tired, couldn't even take the trash out without exhaustion. On Wednesday he got out of the shower and I saw his stomach and it looked like he was pregnant and I knew something wasn't right. I called our primary and he went to see her and they did a CT Scan and they diagnosed peritoneal cancer. That was Thursday night. Friday morning she called and said get to the hospital as his blood count (hemoglobin was 7) as he needed a transfusion. The oncologist came in and said they weren't sure what it really was. We live in Florida and going to get him moved to MD Anderson Cancer Center which is 3 hours away. Today they're going to remove some of the fluid from his abdomen and check his bone marrow and biopsy. I would rather it be done at Anderson. So we're in limbo but he will be moved to Anderson sometime this week to figure out what he really has. This came as a total shock as he attributed the fatigue to a change in his medicine but when I saw his stomach I knew something wasn't right. I do know I want him at a specialized cancer center and he'll either go by ambulance or be air transported. Apparently this is extremely rare but even rarer in men. Prayers to you and your family. Also his CT Scan showed nodules in the peritoneal and also something on his lung. Thus going to get MD Anderson to get answers.