Aa
CA-125 CA-19.9 CEA tests
Hi,
Just wondering if anyone knew whether these tests are something that is tested for all cysts or just the suspicious ones?
Thanks
Just wondering if anyone knew whether these tests are something that is tested for all cysts or just the suspicious ones?
Thanks
I have a call in to my onc. I am starting to read all of the info you sugested. I asked my first onc if mine could be appendix cancer, but she dismissed me immediately. I have not asked the one I see now. Thanks again, Marie
Marie,
You need to get your cancer retested and get in touch with a specialist pseudomyxoma surgeon! You have too many symptoms that are indicative of appendix cancer to risk not doing.
Getting a specialist PMP surgeon for appendix cancer is more crucial than a gynae one for cysts, and I don't say that lightly! The surgery and HIPEC have to be done correctly and there are not many surgeons that have experience and the capability to do it. Be prepared to travel. Prof Sugarbaker in Washington is the 'inventor' of the treatment, but there's several other excellent surgeons in the US (I'm in the UK). It is often dismissed by doctors that are not informed as barbaric and affects quality of life - I, like many others who've had the surgery are testmony that it isn't - PMP'ers in the US have trouble with insurance cover (as it is deemed 'experimental' as the research numbers are tiny compared to other cancers) but have a really good support network that gets them through . Do your research, there isn't a lot of information about appendix cancer and PMP because it's rare but it does tend to be reliable and relatively free from cranks and the like so is reliable in the main.
Have a look on http://www.pmpawareness.org/ it gives all the reputable PMP surgeons and has some really good links. There is a link to the Belly Button club on there, which is a PMP forum, they will be able to give you advice about finding a doctor and the next steps.
Other good sites are
http://www.christie.nhs.uk/patients/treatments/pmp/default.aspx (my hospital, they are wonderful! there is also a PMP forum at Christie's)
http://health.groups.yahoo.com/group/pmpbellybuttons/ Belly Button Club (part of the surgery is removal of the belly button, I don't miss it now but it still itches!
http://www.appendix-cancer.com/ A US nurse who has PMP, excellent site
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=lisaconnolly My caring bridge site, I don't add to it that often but it will give you a bit of an idea about my treatment.
Good luck and let me know how you get on
Lisa xxx
You need to get your cancer retested and get in touch with a specialist pseudomyxoma surgeon! You have too many symptoms that are indicative of appendix cancer to risk not doing.
Getting a specialist PMP surgeon for appendix cancer is more crucial than a gynae one for cysts, and I don't say that lightly! The surgery and HIPEC have to be done correctly and there are not many surgeons that have experience and the capability to do it. Be prepared to travel. Prof Sugarbaker in Washington is the 'inventor' of the treatment, but there's several other excellent surgeons in the US (I'm in the UK). It is often dismissed by doctors that are not informed as barbaric and affects quality of life - I, like many others who've had the surgery are testmony that it isn't - PMP'ers in the US have trouble with insurance cover (as it is deemed 'experimental' as the research numbers are tiny compared to other cancers) but have a really good support network that gets them through . Do your research, there isn't a lot of information about appendix cancer and PMP because it's rare but it does tend to be reliable and relatively free from cranks and the like so is reliable in the main.
Have a look on http://www.pmpawareness.org/ it gives all the reputable PMP surgeons and has some really good links. There is a link to the Belly Button club on there, which is a PMP forum, they will be able to give you advice about finding a doctor and the next steps.
Other good sites are
http://www.christie.nhs.uk/patients/treatments/pmp/default.aspx (my hospital, they are wonderful! there is also a PMP forum at Christie's)
http://health.groups.yahoo.com/group/pmpbellybuttons/ Belly Button Club (part of the surgery is removal of the belly button, I don't miss it now but it still itches!
http://www.appendix-cancer.com/ A US nurse who has PMP, excellent site
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=lisaconnolly My caring bridge site, I don't add to it that often but it will give you a bit of an idea about my treatment.
Good luck and let me know how you get on
Lisa xxx
I did not mean to send that yet. Oops. I have trouble getting my onc to listen to me, but I will push this. My mom had the same symptoms as me and died of ovca after only 3 months. I will let you know what I findd out. Thank you so much, Marie
Thank you for the time you took to help me. I did have mucinous tumors and my cancer was slow growing and does not give high CA125s like most ovca. The path was mucinous adenocarcinoma. I had bilateral tumors on the ovaries. One almost as big as a soccer ball! No ascites or fluid in the abdominal cavity, though. I had colon resection, rectal tumor removed and there was implants on the diaphragm that were not able to be removed. I have and appointment 6/20. I will ask my onc about this. I did have I/P chemo, but with taxol and cisplatin. The implants were still there after chemo, but have been stable.
Hi Marie,
I thought I'd replied yesterday but it must have got lost somewhere! Prepare for a long post, but if anything rings a bell it'll be worth the read!
I think it maybe worth while getting your tissue samples re-tested - there's nothing to loose if it is appendix cancer rather then ovca. Being unable to identify the primary is not unusual with mis-diagnosed appendix cancer, because it's very rare it's not always recognised and I've yet to come across a 'standard' doctor that's even heard of it! The fact that your appendix was badly affected is an indicator, did you have a mucinous cyst, and was there mucus in your abdomen?
Appendix cancer and pseudomyxoma peritonei (PMP) are rare - 1 in a million - however the initial symptoms in women are very similar and PMP is often mis-diagnosed because of this. The treatment is different, but the prognosis for PMP, if treated correctly and all tumour is removed, is often quite good.
Basically with appendix cancer a polyp occludes the lumen of the appendix, the appendix lining produces mucus (the same as the bowel), the appendix fills and bursts. The mucus and cancer cells are released into the abdominal cavity and seed on the outside of organs throughout the abdomen, grow and start to produce mucus. The mucus is trapped in the abdomen and the internal organs are compressed, eventually leading to organs not functioning and death if not treated.
The condition can be anything inbetween benign and aggressive, the result is the same, as is the treatment. The tumour is unusual in that it doesn't tend to travel in the blood or lymph, so secondaries outside the abdomen are rare, but not unheard of. The tumour also grows on membranes, rather than being invasive, so can give the impression in surgery that whole organs are affected when it's infact a coating. The fact that it grows on membranes with a poor blood supply means that systemic chemo doesn't work well so heated intraperitoneal chemo (HIPEC) is used during surgery, bowel chemo rather than ovca chemo.
The signs and symptoms vary. Large mucinous ovarian cysts are common, mucus/cells enter a normal ovulation cyst, implant and grow. Mucus filled hernias are also common. The mucus gathering in the abdomen cause ascites and a swollen stomach - it's often referred to as 'Jelly Belly'!. Depending where the tumour grows and if the mucus solidifies the symptoms vary. Symptoms are similar to very large cysts, where pressure is being put on nerves and organs. Most women I've come across presented with a large cyst and were told from CT results that it was definately something nasty and advanced, before surgery because the tumour covers many organs. The cancer is usually very slow growing, I proberbly had it for about 3-5 years before treatment, the symptoms often come on very slowly so are not always noticible and become 'normal'. The appendix can reseal and burst more than once. I had 2 occassions where I went to A&E with severe abdo pain in the 3 years before diagnosis, but because the appendix isn't infected there is no peritonitis and the pain resolves itself in about a week or so, and so it's often dismissed as tummy ache, sometimes the appendix is removed but not treated as anything but standard appendicitis.
The treatment is basically to remove all of the visible tumour and intraperitoneal chemo directly to the tumour during surgery. The surgery is massive due to the number of organs that can be affected. All the non-essential affected organs are removed - mine included spleen, all reproductive organs, gall bladder, omentum, mesentry, all abdominal linings and membranes, small and large bowel resections and appendix, (the blighter!) All affected essential organs are surface stripped - mine include liver, stomach, diaphragm, small and large bowel. My surgery was over 30 hours in 3 ops in 18 months (the 'big' op is usually done in 1 part, mine was going to be over 20 hours and the doctors decided to split it in two). The second 2 had HIPEC during surgery which kill the microscopic remaining cells. I have 2 tiny spots left on my liver but my surgeon thinks that it could well be dead cancer cells as I've had two lots of chemo. I find out after September's CT scan.
The surgery sounds extreme, and I suppose it is, but I'm 7 months post-op and apart from the post-op tiredness being still there - I think because I had 3 ops rather than the usual 2 - and an tempory ileostomy, I'm feeling 'normal'. The HIPEC was a lot easier than systemic chemo.
Sorry to do such a large post but PMP mis-diagnosis is common and if there is a chance that it could be PMP rather than ovca it's worth looking into as the prognosis is good with treatment, and if left without the HIPEC it will reoccur somewhere down the line.
Good luck,
Lisa.
I thought I'd replied yesterday but it must have got lost somewhere! Prepare for a long post, but if anything rings a bell it'll be worth the read!
I think it maybe worth while getting your tissue samples re-tested - there's nothing to loose if it is appendix cancer rather then ovca. Being unable to identify the primary is not unusual with mis-diagnosed appendix cancer, because it's very rare it's not always recognised and I've yet to come across a 'standard' doctor that's even heard of it! The fact that your appendix was badly affected is an indicator, did you have a mucinous cyst, and was there mucus in your abdomen?
Appendix cancer and pseudomyxoma peritonei (PMP) are rare - 1 in a million - however the initial symptoms in women are very similar and PMP is often mis-diagnosed because of this. The treatment is different, but the prognosis for PMP, if treated correctly and all tumour is removed, is often quite good.
Basically with appendix cancer a polyp occludes the lumen of the appendix, the appendix lining produces mucus (the same as the bowel), the appendix fills and bursts. The mucus and cancer cells are released into the abdominal cavity and seed on the outside of organs throughout the abdomen, grow and start to produce mucus. The mucus is trapped in the abdomen and the internal organs are compressed, eventually leading to organs not functioning and death if not treated.
The condition can be anything inbetween benign and aggressive, the result is the same, as is the treatment. The tumour is unusual in that it doesn't tend to travel in the blood or lymph, so secondaries outside the abdomen are rare, but not unheard of. The tumour also grows on membranes, rather than being invasive, so can give the impression in surgery that whole organs are affected when it's infact a coating. The fact that it grows on membranes with a poor blood supply means that systemic chemo doesn't work well so heated intraperitoneal chemo (HIPEC) is used during surgery, bowel chemo rather than ovca chemo.
The signs and symptoms vary. Large mucinous ovarian cysts are common, mucus/cells enter a normal ovulation cyst, implant and grow. Mucus filled hernias are also common. The mucus gathering in the abdomen cause ascites and a swollen stomach - it's often referred to as 'Jelly Belly'!. Depending where the tumour grows and if the mucus solidifies the symptoms vary. Symptoms are similar to very large cysts, where pressure is being put on nerves and organs. Most women I've come across presented with a large cyst and were told from CT results that it was definately something nasty and advanced, before surgery because the tumour covers many organs. The cancer is usually very slow growing, I proberbly had it for about 3-5 years before treatment, the symptoms often come on very slowly so are not always noticible and become 'normal'. The appendix can reseal and burst more than once. I had 2 occassions where I went to A&E with severe abdo pain in the 3 years before diagnosis, but because the appendix isn't infected there is no peritonitis and the pain resolves itself in about a week or so, and so it's often dismissed as tummy ache, sometimes the appendix is removed but not treated as anything but standard appendicitis.
The treatment is basically to remove all of the visible tumour and intraperitoneal chemo directly to the tumour during surgery. The surgery is massive due to the number of organs that can be affected. All the non-essential affected organs are removed - mine included spleen, all reproductive organs, gall bladder, omentum, mesentry, all abdominal linings and membranes, small and large bowel resections and appendix, (the blighter!) All affected essential organs are surface stripped - mine include liver, stomach, diaphragm, small and large bowel. My surgery was over 30 hours in 3 ops in 18 months (the 'big' op is usually done in 1 part, mine was going to be over 20 hours and the doctors decided to split it in two). The second 2 had HIPEC during surgery which kill the microscopic remaining cells. I have 2 tiny spots left on my liver but my surgeon thinks that it could well be dead cancer cells as I've had two lots of chemo. I find out after September's CT scan.
The surgery sounds extreme, and I suppose it is, but I'm 7 months post-op and apart from the post-op tiredness being still there - I think because I had 3 ops rather than the usual 2 - and an tempory ileostomy, I'm feeling 'normal'. The HIPEC was a lot easier than systemic chemo.
Sorry to do such a large post but PMP mis-diagnosis is common and if there is a chance that it could be PMP rather than ovca it's worth looking into as the prognosis is good with treatment, and if left without the HIPEC it will reoccur somewhere down the line.
Good luck,
Lisa.
From what I have tried to google it seems the CA19-9 is used mostly for pancreatic and colon cancer. I have not any family history of cancer except for my grandad who had lung cancer. Strange. Anyways I guess wil just have to wait for the results. I have had a mass for three months or so that has not resolved. They say it may be an endimetrioma or a tumor. I had the above tests and find out this week. I have seen from this site most people have the CA125 but wasnt sure about the others. Thanks.
My path report said priamary site undetermined. But my dx is ovca. I wonder because my appendix was so affected it was just eaten away. The whole area around the appendix was full of cancer. Is the treatment for appendix CA the same as for ovca? Marie
Hi,
I have appendix cancer but was thought to be advanced ovarian or colon cancer pre-surgery. I had CA-125 initially when it was thought to be 'just a cyst', following my CT results it wasn't possible to identify whether my primary was ovarian or bowel so I had CA-19.9 and CEA (and a colonoscopy). All were raised, more so the CEA and CA-19.9, the colonoscopy was clear. It turned out to be neither ovarian or colon cancer during surgery, although both organs were greatly affected. All three are used as my ongoing cancer markers.
As with CA-125, CEA and CA-19.9 can be associated with conditions that are not cancer.
Link to CEA info.
http://www.medicinenet.com/carcinoembryonic_antigen/article.htm
I couldn't find a decent link to CA-19.9
Lisa.
I have appendix cancer but was thought to be advanced ovarian or colon cancer pre-surgery. I had CA-125 initially when it was thought to be 'just a cyst', following my CT results it wasn't possible to identify whether my primary was ovarian or bowel so I had CA-19.9 and CEA (and a colonoscopy). All were raised, more so the CEA and CA-19.9, the colonoscopy was clear. It turned out to be neither ovarian or colon cancer during surgery, although both organs were greatly affected. All three are used as my ongoing cancer markers.
As with CA-125, CEA and CA-19.9 can be associated with conditions that are not cancer.
Link to CEA info.
http://www.medicinenet.com/carcinoembryonic_antigen/article.htm
I couldn't find a decent link to CA-19.9
Lisa.
Oh, I'm sure that's true.. I just wanted to mention it (much like the CA125 ) isn't always a reliable marker.. I can't remember exactly why it doesn't "work" for my friend, but for some reason , her Drs. don't rely on it..
If you google ca-199 you will see that it is a tumour marker for the cancers I mentioned above
Re: the CA 19.9. A very good friend of mine is struggling with Pancreatic Cancer. I don't know how it relates to OvCa but at least in her case, the Ca-19.9 is not reliable.. So I don't know how much weight is given to it, at least for some cancers.
And Jan, my friend has become a real advocate for this disease and early detection. You'd be surprised how many younger folks are being affected. She was 45 when diagnosed so maybe your hubby may not want to wait till his 60s. Problem is that it is much like Ovca in that it is extremely hard to diagnose in it's early stages. My friend was given the run around for 6 mos. !! Went to Johns Hopkins finally (where they have fantastic program) There and Virginia Mason in Seattle.
Didn't mean to go OT , but thought it worth mentioning.
Sandy
And Jan, my friend has become a real advocate for this disease and early detection. You'd be surprised how many younger folks are being affected. She was 45 when diagnosed so maybe your hubby may not want to wait till his 60s. Problem is that it is much like Ovca in that it is extremely hard to diagnose in it's early stages. My friend was given the run around for 6 mos. !! Went to Johns Hopkins finally (where they have fantastic program) There and Virginia Mason in Seattle.
Didn't mean to go OT , but thought it worth mentioning.
Sandy
My FIL who just passed away a few months ago had the ca19.9 for his pancreatic cancer, but I don't know about it's uses for ovca. Is there any benefit to having both tests done? I was under the impression that familial pancreatic cancer is a gene that is carried in the male. My fil and his father and brother all died from it. My husbands Dr told him he needed to be checked early (65) as it usually hits men in older years. I don't know much about it but the pancreatice specialist he saw at MD Anderson said not to worry to much about it with the girls, just the men in the family.
Jan
Jan
Hi ,
the ca199 is a tumour marker for ovarian, pancreatic , gastric and some colon tumours. I had this test along with the ca125 because my father passed over from pancreatic cancer and that can be hereditary.
Best wishes Angie
the ca199 is a tumour marker for ovarian, pancreatic , gastric and some colon tumours. I had this test along with the ca125 because my father passed over from pancreatic cancer and that can be hereditary.
Best wishes Angie
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