Nurse has a question.

[nurseamy]

I'm a GYN-onc nurse and very often have patients with normal CA-125's and negative CT scans (PET scans not done nearly as routinely as CT scans, so I can't tell you what they are).  Yet, these patients are doing quite poorly-- dependent on TPN, have nephrostomy tubes or a very unmanageable wound, very low functional status, activity intolerant, pain.  I don't understand this.  How can it be that there is no active disease, yet these women have very low quality of life and a poor prognosis?  I would appreciate hearing anything you have to say.  Thank you for your time.  

[alanpvegas]

I think it was already posted, but they can have low CA-125 but have progressive disease whereas one with very high CA-125 can be stable.  My mom's oncologist mentioned this before and I'm sure I read it on this forum before as well.

A major issue is that almost all OvCa patients are Stage III which means metastasis in the abdomen, especially the colon (etc).  So seeding is present and (as one of my mom's Gyn Onc stated) you can have 'tiny' tumors that will cause issues leading very easily to requiring TPN.  My mom was eating fine in the hospital, and after debulking surgery she was basically unable to eat until her death which was just shortly after one year.  We had about only one full month where eating was possible.  Pain was intense and constant.  She was on dilaudid the entire course and I was shocked to learn how many nurses (and doctors) had no clue about pain control and many misconceptions about opioid pain control for cancer patients.  

Please remember this: never let any of your patients be in pain (the NCI and ACS both agree that this is unacceptable)!  PCA pumps can also be set to have a constant infusion via PICC or port (so mention this to doctors who only have it where the patient must press to receive dosage...this would have saved my mom incredible pain *waiting* for nurses to come...always late).

[Helmar]

Thankyou for your response. It's much appreciated. hugs..Helen..

[nurseamy]

I very much enjoyed what you had to say in your post (the response to mine-- which was dated January 17th).  Thank you for your inspirational comments about the CA125.

[nurseamy]

Hello Everyone,
Thanks for responding to the post I left back on January 17th.  I am in complete agreement that the CA125 is very ambiguous and is definitely not an indicator of quality of life or survival.  I am baffled, however, by the patients I have whom show no active disease on scans and have normal CA125's, yet they suffer from a lot of other problems more than a year after their initial debulking surgery and/or well out of chemotherapy.  I'm talking issues like obstructed ureters, constant nausea and vomiting in the absence of bowel obstruction, ventilation problems worthy of BiPAP.  
I am new to this website and am grateful that this exists for us-- women fighting ovarian cancer, their families and friends, nurses.  Thank you for sharing.
Amy

[madgeOwens]

I agree that they should not pay so much attention to test numbers and more attention to the actual patient. Everyone is different.  

[hatgal]

God Bless all that are battling this disease - my heart truly goes out to all of you.

I am having a total hysterectomy on Feb. 6 b/c of ongoing adeno, endo, fibroids (or uterine cystic lesions they called them), and cysts on my ovaries that do not dissolve with my period.  This has been going on for a bit over a year but things a year ago were'nt as quite as severe (although severe enough for me to puruse a gyno/onco that totally dismissed me) as they are now - unbearable pain and cramping (i have alot of pain in my pevlic area and pressure from the diseases/cysts, but I also have a very bad back problem that I and my neurosurgeon believe could be relieved by the hysto with the removal of the pressure on my back).

In any event, my CA125 has gone from a 5 last year now to a 9 and, like you Marie, my test is considered within "normal" limits.  73% is a huge number with "normal" CA125s.  So although mine are low, I'm rather nervous for my hysto outcome with all the disease going on that is seen through TVU.  My doc says he will find much more when he goes in and he looked nervous himself.  So I'll let you kow if I believe in the numbers either, but Marie has the stats right there.

Best to all......... Elizabeth

[rmarie]

Another nurse checking in.  I was a stage 3 C OVCA at diagnosis with a 14 CA 125, the only time it seems to elevate is post op, so I am in the 73% whose tumor does not express the marker.  So pay not attention the the numbers, they mean nothing, as far as I am concerned.  I don't even ask what mine is - it is meaningless.  I have moved to a stage 4 with a recurrence in my chest.  Because I am in good physical condition I have had a thoracotomy and wedge resection to remove the tumor.  From what I have learned about this damn disease is that it gets lots of implants all over the abdomen that interfere with normal functioning, as well as the age and physical condition of the patients you are dealing with, and you will see a number of problems.  You are not seeing the ladies that are dealing with this disease on a daily basis in the hospital, they are out functioning and dealing.  Dealing with any cancer as 4afriend said is a mind, body connection.  With my cancer, I truly believe that if I said I can't do it anymore, then that would be it, I would lose the battle.  After 40 years of nursing I truly believe that there are no answers to some things, it remains a mystery of life.    Marie

[Helmar]

Hello nurses... I'm not a nurse, but a Stage 4 Ovarian cancer person, who was dx almost 4 years ago. My CA.125 is generally in the 100s/1000s and is currently over 7000. The cancer is contained in the lower pelvic area, and is likened to grains of rice, so I've never had clear scans...but, I feel really well, have a great appetite (even when doing the constant chemo)...and don't experience pain or discomfort, so I lead an active lifestyle. My Oncol. instils into me that I should not take any notice of the C.A.125 numbers, and should gauge how I am, by how I feel, which is generally really good. He has told me that some women with much lower CA.125 readings can have more active cancer than I, and he feels that in my siutation, it will be treated as a chronic disease. This is one wretched disease, but it seems that there are not two of us exactly the same. I salute nurses... they do a wonderful job. Hugs...Helen...

[SimplyStar]

Ok another nurse checking in here, an old one at that, from what I gather from the first post you are talking about patients in the hospital that you are caring for.  Perhaps after debulking surgery? Some surgeries last many hours, daughters was 6 1/2 hours and another 6 hours in recovery. That takes a hugh toll on the person.  If so , the TPN is necessary to control the pain of a very major surgery. Usually alot of oragans get removed, alot of manipulating of the intestines, and other organs, most have many lymph nodes removed, , up to 50 - 75 as an average.  also imagine the stress of the patient, she has been told she has cancer, she has just lost all her femlale productive organs. The Big C is still a death threat to those that are newly dx'ed, because it is all new to them, the usual stay for most is at the minimum of 5 days. The initial CA125 does go done dramatically after the surgery.  They have an incision that usually runs from above the belly button down to the pelvic area, lots of clamps, stitches and what do we do to them, get them up as soon as possible to walk, potty time, we all know you do not get much rest in a hospital. Urging them to have that first BM,  get rid of the catheters if they have one and most do. All I can say to you is, of all the surgeries that I have had the "pleasure" of being connected with, a debulking is one of the worst to deal with,  for the patient, physically, mentally and emotionally. My daughter went through hell after hers, they took everything plus did a intestional resection. In my years I learned to always put myself in my patients place and act accordingly.  Come into this forum as often as you can and listen to these ladies,  learn about this horrible disease and what it does to your patients and their familys.  Leslee told me she had the most understanding nurses that listened to her and helped ease her through her stay . Just be thankful that it isn't men that have OVCA, because we all know how impossible a man is in the hospital.  I hope I have not offended you in any way, it's just that when Leslee was diagnosed with this, I felt very guilty , because I did not know anything about OVCA, since then I have researched it from top to bottom. Leslee also said when she was low, that a nurse that would hold her hand, give her a hug or just talk to her about mundane things was really appriciated. After the 3rd day, letting her sleep was a gift. Her doctor was a very positive influence on her also, made an effort to explain it all to her, didn't count her as a number, and left her up beat after each visit. Leslee was in the hospital on the 4th of July , day after her surgery, he brought his family up to the floor and asked if she would like to meet them.  This personalized him to her.  A Chaplin visited everyday also. The dietitian visited about likes and dislikes for foods. All these things put together made it easier for her to put things into perspective. So I would say you need to look at the total team working with your patients and see that each is offering hope, security and a sense of well being.   Marty

[4afriend]

I'm also a nurse, however, this is not my clinical area of experience.  I have been trying to learn as much as I can in regards to this illness because of a friend.  With a lot of my own research and the lots of explanation from the lovely women on this site, I can only share some possibilities...1.  every woman is different in regards to how her body is affected by the disease and how her body reacts to the treatments in which she receives for the disease.  2.  Not all tumors express CA-125  3.  I do believe that there are times where the disease is so microscopic that its not necessarily visible on the CT scan (that wouldn't mean that its so small that it wouldn't effect her health)  4.  The age of the person as well as other health conditions would definately have to be considered.. I personally think her emotional  and psychological well being is a big factor.  I'm sure you're aware the drugs themselves can be so toxic to body that even with taking out the cancer...it can be a very debilitating thing for the body to recoup from.  I'm sure that some of the ladies here will be along shortly to offer you more experienced explanations...but as always, the mind and spirit is a very powerful thing...I must say, bless you for being the nurse we all want...the one to look outside her 9-5 job in search of help, hope, and understanding for those you care for.  Take care T