Can There Be Anything Else?

In August I began having bowel changes that were far beyond normal for me - repeated bouts of constipation that felt more like blockage, and growing abdominal pain.  I went to my regular doctor, who scheduled me for a colonoscopy (grandmother is a colon cancer survivor, both parents succumbed to cancer, one lymphoma, one esophageal adenocarcinoma) and put me on miralax.  The colonoscopy removed a pre-cancerous growth that did not explain the symptoms.  The pain continued to grow worse.  I also had trouble starting to pee, a slow stream, and dribbling after I thought I was finished.  I was losing about two to three pounds a week because I just didn't have the appetite I should (this problem went away when I started pain meds). 

I began having problems with nausea, and when the nausea would hit I would also break out into a sweat and get very pale and shaky.  These problems were worse with heat.  Traveling any length of time or attempting to fight through fatigue and be "normal" instead of laying down and declaring myself "too sick" also brought on the sick spells.  When I told my regular doctor the pain was growing worse and symptoms were continuing, he sent me to an OB/Gyn.

The first OB/Gyn must have been a sadist, and after one frustrating visit with that woman that left me in tears (one quote from it - "You obviously have multiple gynecological problems, which I WON'T treat because you have high blood pressure.  I refuse to discuss anything with you until I get an endometrial biopsy because your endometrial stripe is thickened.") - she never heard about left side abdominal pain, told me I must have PCOS... didn't care that the pain had been steadily growing worse and not affected by my cycles for over three months at that point.  I went back to my doctor who sent me to another doctor and assured me that endometriosis was a pretty good possibility.

I went to that doctor two days ago.  He told me this is NOT presenting like endometriosis, and the only thing I can find which fits ALL the symptoms is Ovarian Cancer...  is there anything else that's been suggested?  Something I can hold on and assure my friends and family with while we do more imaging studies and schedule surgery? 

Thank you for reading - I know it was long...  More than six months now with increasing pain and symptoms...  and no answers yet.

You and the doctor are doing/discussing imaging studies and surgery? I'm not clear on that. Are they looking at something else other than Ovarian? It sounds like it's only been a few days since your blood tests - so you should receive the results soon, shouldn't you? If not, then get on the phone and DEMAND some answers. Time passes so slowly when you're worried about the results.

Please come back and let us know what's happening. 

Blessings, LindaMae 

Hi, I would immediatly make an appointment with a good Gyn/Onc. That is what you need.There is no waiting with OVCA.Please let us know what your plans are.

Hugs and Prayers,

Terry

On 2/5/2009 Momma Wuzzi wrote:

In August I began having bowel changes that were far beyond normal for me - repeated bouts of constipation that felt more like blockage, and growing abdominal pain.  I went to my regular doctor, who scheduled me for a colonoscopy (grandmother is a colon cancer survivor, both parents succumbed to cancer, one lymphoma, one esophageal adenocarcinoma) and put me on miralax.  The colonoscopy removed a pre-cancerous growth that did not explain the symptoms.  The pain continued to grow worse.  I also had trouble starting to pee, a slow stream, and dribbling after I thought I was finished.  I was losing about two to three pounds a week because I just didn't have the appetite I should (this problem went away when I started pain meds). 

I began having problems with nausea, and when the nausea would hit I would also break out into a sweat and get very pale and shaky.  These problems were worse with heat.  Traveling any length of time or attempting to fight through fatigue and be "normal" instead of laying down and declaring myself "too sick" also brought on the sick spells.  When I told my regular doctor the pain was growing worse and symptoms were continuing, he sent me to an OB/Gyn.

The first OB/Gyn must have been a sadist, and after one frustrating visit with that woman that left me in tears (one quote from it - "You obviously have multiple gynecological problems, which I WON'T treat because you have high blood pressure.  I refuse to discuss anything with you until I get an endometrial biopsy because your endometrial stripe is thickened.") - she never heard about left side abdominal pain, told me I must have PCOS... didn't care that the pain had been steadily growing worse and not affected by my cycles for over three months at that point.  I went back to my doctor who sent me to another doctor and assured me that endometriosis was a pretty good possibility.

I went to that doctor two days ago.  He told me this is NOT presenting like endometriosis, and the only thing I can find which fits ALL the symptoms is Ovarian Cancer...  is there anything else that's been suggested?  Something I can hold on and assure my friends and family with while we do more imaging studies and schedule surgery? 

 

Thank you for reading - I know it was long...  More than six months now with increasing pain and symptoms...  and no answers yet.

If you don't mind me asking, where are, what state and city? Maybe someone has a good doctor to send you too! Many read this and will suggest a cancer place or a good doctor to get some real answers. Get or demand a CA 125 blood test its the big signal! If doc refuses than hes not a good doctor. He or she should listen to you and do tests you request.

Good luck to you and come on any time and someone out here can help you.

Nancy

I'm about an hour away from KC, MO, but the doctor we're going to now is about an hour away from us (south and east, farther from KC) - since we are uninsured we are hoping that doctors farther away from the city would be cheaper (surprisingly, this ISN'T so)  I asked the medical assistants at my regular doctor's office about CA-125 and they wanted to know if anyone had ordered it, and, of course, no one has.

 I've read that CA-125 is not a reliable test because some ovarian cancers do not increase production of that marker to high elevations and other abdominal problems (endometriosis, even abdominal injury) can create false "positives" - elevated rates of the marker when no cancer is present.  It is best used as an indicator of response to treatment after diagnosis than as a cancer test. 

 If I've misunderstood my research, I would love to be directed other places, and I certainly don't mind asking the doctor when I see him again.  I will have to admit to him that my husband was so panicked by how sick I was by Christmas that he started me on cesium chloride even though we didn't have a diagnosis yet, and it (surprisingly) helped reduce a lot of the symptoms and increased my energy levels.  We've since discontinued the product because of some undesireable side effects and the symptoms are slowly increasing again.  I am refusing to go back on it until we know for sure, because I don't want it interfering with test results or possibly delaying surgery if they decide surgery is required.

On 2/6/2009 Momma Wuzzi wrote:

I'm about an hour away from KC, MO, but the doctor we're going to now is about an hour away from us (south and east, farther from KC) - since we are uninsured we are hoping that doctors farther away from the city would be cheaper (surprisingly, this ISN'T so)  I asked the medical assistants at my regular doctor's office about CA-125 and they wanted to know if anyone had ordered it, and, of course, no one has.

 I've read that CA-125 is not a reliable test because some ovarian cancers do not increase production of that marker to high elevations and other abdominal problems (endometriosis, even abdominal injury) can create false "positives" - elevated rates of the marker when no cancer is present.  It is best used as an indicator of response to treatment after diagnosis than as a cancer test. 

 If I've misunderstood my research, I would love to be directed other places, and I certainly don't mind asking the doctor when I see him again.  I will have to admit to him that my husband was so panicked by how sick I was by Christmas that he started me on cesium chloride even though we didn't have a diagnosis yet, and it (surprisingly) helped reduce a lot of the symptoms and increased my energy levels.  We've since discontinued the product because of some undesireable side effects and the symptoms are slowly increasing again.  I am refusing to go back on it until we know for sure, because I don't want it interfering with test results or possibly delaying surgery if they decide surgery is required.

Yes you seem to be correct, from what I know, but having it checked to just see what it is won't be bad either. Did they do a CT scan because thats how they discovered mine along with ca 125. The ca 125 was 6600 and it made doc order the ct scan. the day later I heard the news and was scheduled for surgery 4 days later. Stage 3 c Ovarian cancer. Have a oncologist help with surgery if you have and believe its cancer. DUblking is a good think to have done at surgery too.

I am from NEW york Long Isand, so I cannot help with a doctor. I was blessed with a great GYN. He closed his office to come to my remission party, back in july 08. I was in remission for two months and CA 125 went back up again and a ct scan was done and I have a 4 mm tumor in my abdomen. I go to Sloan Kettering. Check out the cancer places there are many around all over. They do more than a doctor out of a general hospital.

Sorry you have to go through this but all of us out here have had it or have it and know what you are going through and will.

I am 49 and was DX at 48.

Let us know what happens and if you have any concerns or questions put them out there and one of us we put in our two cents for what it is worth.

Nancy

The doctor is getting all reports and previous imaging from other appointments (including the colonoscopy - he suspects the abnormal growth may have occured near the problem) and the previous ultrasound.  He has ordered another ultrasound, and if it doesn't give him all the information he needs he'll then order an abdominal CT.  He said that since my other ultrasound was a doctor's office ultrasound it probably didn't give the definition he wants, so he wanted another one.  I also know that if it looks the same way (one ovary covered in fluid, multiple cysts on the other) it is unlikely that the fluid on the ovary was ever a result of a ruptured cyst (I was pretty sure when the previous doctor insisted it was that she was wrong at that point, anyhow).  Then I see him again on the 24th. 

I'm happy that he's listening to me and taking this seriously.  I've read that most ovarian cancer diagnoses take six months to a year to get through the other more possible possibilities, so I guess I'm right on schedule, for as scary as it is to be waiting when the possibilities are what they are....

On 2/6/2009 Momma Wuzzi wrote:

The doctor is getting all reports and previous imaging from other appointments (including the colonoscopy - he suspects the abnormal growth may have occured near the problem) and the previous ultrasound.  He has ordered another ultrasound, and if it doesn't give him all the information he needs he'll then order an abdominal CT.  He said that since my other ultrasound was a doctor's office ultrasound it probably didn't give the definition he wants, so he wanted another one.  I also know that if it looks the same way (one ovary covered in fluid, multiple cysts on the other) it is unlikely that the fluid on the ovary was ever a result of a ruptured cyst (I was pretty sure when the previous doctor insisted it was that she was wrong at that point, anyhow).  Then I see him again on the 24th. 

I'm happy that he's listening to me and taking this seriously.  I've read that most ovarian cancer diagnoses take six months to a year to get through the other more possible possibilities, so I guess I'm right on schedule, for as scary as it is to be waiting when the possibilities are what they are....

I had two utrasounds proir to ca 125 test and Ct scan. First ultra sound, showed a fibor tumor on one ovary and then the second showed another tumor on other ovary. Tests were about a month apart. Ca 125 test came next and then CT. I had adbomen and pelvic and vagnal ultra sounds. Vagnal showed the fibors.

Just something to take in and know. I had bad urinary tract infection on and off for two years! I finally found this GYN that found my problem and saved my life.

Good luck> Nancy