Please help me!

Sissygirl

Hello,

My friend is 47 years old. She has a mass growing from her ovary into her colon about the size of a baseball. She has been referred to an oncologist because her dr. said it didn't look good. They originally gave her a test which came back negative, but the dr. says these tests can give off false negatives. She is waiting on funding so she can see the oncologist. This can take weeks...maybe much longer.

This is what I know so far...it is not what they call a wet mass, she is tired all the time, has mild pain in the area, stomach bloat, heavy periods, constipation and has lost 12lbs in a month without trying. Please...can someone tell me if these symptoms sound familiar. I am devastated...I feel as though this is happening to me. Please don't ask me to go away until she gets tested. I need to help her find information now. What were your symptoms? Did you get an original false test? What does all this mean? I thank you in advance for your time. My friend means everything to me...please help me. Sissy

AussieMaddie

The unfairness of the medical system
Hi Sissy,

I'm in Australia. We have access to public hospital care at any time - though it is overloaded. It means that people are seen to first who are most at risk. (There's also a privately-funded system in which patients are generally seem more quickly) It's so unfair that your friend can't get in sooner. Would it help to get a referral from a different general practitioner, or else, to see a different oncologist - in a different state if necessary?

Is there any way that she could be seen in a free clinic somewhere. She definitely has suspicious symptoms. If she's not eligible to see another oncologist, might she be eligible to see a specialist gynocologist for further tests? If such a doctor could find something wrong, she might then be able to be seen earlier - but I don't know your health system.

I'm sorry I can't offer any more ideas. But most of the people here are from the USif that's where you are, so I trust that others will be better informed than me in helping you.

Best of luck to your friend.

AussieMaddie

carolenk

AussieMaddie said:

The unfairness of the medical system
Hi Sissy,

I'm in Australia. We have access to public hospital care at any time - though it is overloaded. It means that people are seen to first who are most at risk. (There's also a privately-funded system in which patients are generally seem more quickly) It's so unfair that your friend can't get in sooner. Would it help to get a referral from a different general practitioner, or else, to see a different oncologist - in a different state if necessary?

Is there any way that she could be seen in a free clinic somewhere. She definitely has suspicious symptoms. If she's not eligible to see another oncologist, might she be eligible to see a specialist gynocologist for further tests? If such a doctor could find something wrong, she might then be able to be seen earlier - but I don't know your health system.

I'm sorry I can't offer any more ideas. But most of the people here are from the USif that's where you are, so I trust that others will be better informed than me in helping you.

Best of luck to your friend.

AussieMaddie

The waiting game
Dear Sissy

My heart goes out to you and your friend. Please do what you can to NOT fall apart or you will be no use to your dear friend. I would get your friend on somebody's prayer list...even if she doesn't believe in God. I will pray for both of you as I believe in the power of prayer.

Yes, the symptoms do sound suspicious and yes, there are false negatives, too. Was there a transvaginal ultrasound test done? I have never heard that term "wet mass" used before now but I assume that might mean there is no ascites--if that is true, then THAT is the good news. Ovarian cancer usually causes extra fluid to build up (not always, but MOST of the time).

There will be no answers until surgery is done. All you can do at this point is plan for the worse and hope for the best. I hope you got some sleep.

(((hugs to you both)))

Carolen

djinco

Please contact...
the American Cancer Society. I am sure they can offer you good advice for your friend.

lulu1010

Hope this helps
I am wondering what kind of test he did that was negative? Anyway, I can tell you I had many tests by many doctors and nothing was found. My symptoms were chronic abdominal pain and constipation and eventually loss of weight. I am a nurse and even though I knew most of the doctors fairly well they were beginning to think I was a nut case. A specialized CT scan finally found "thickening" in an area that the pill camera showed a blockage ( was told the test was negative and a month later the doc told me the pill never passed thru!). After that a colonoscopy showed a tumor growing into my colon from the outside. CA-125 was 149 and I was diagnosed with Primary Peritoneal Cancer. Like Tina it was just like someone threw rice over my abdomen with no real tumors except the small one into the colon.
If she is in the states she could apply for medicaid if she qualifies or at least talk with the social worker at the hospital for other options. That is their job (in my opinion anyway). It is my belief (which could be very wrong) that most hospitals have to treat at least initially regardless of ability to pay and I would hope that there is a doctor out there that would work out a payment plan or something to at least get a diagnosis while you pursue other options.
Sounds like the mass needs biopsied and perhaps a CA-125 (blood test that is indicatie of ovarian cancer) would be helpful.
Hopefully it is just a cyst or some other benign growth but you are right it needs checked out. It is not my intention to alarm you or give medical advice. I just want to share my experience because I know so well the fear with this kind of thing and hope you can get the proper treatment for her. We will keep her in our prayers and please keep us posted. I am so glad she has such a good friend.

mopar

SENDING PRAYERS, SISSY
I would get in to a gynecologic/oncologist, ASAP. Good advice from the ladies about calling ACS or any other organization you can. But maybe she can bring on her records with her and pay for a 'consultation', at least to get her in soon. And yes, sometimes there are no pat answers until surgery.

Holding you and your friend in my thoughts and prayers.

Monika

MK_4Dani

Where do you live?
Why does she need to wait for funding?
The symptoms you have mentioned are classic OVCA symptoms...another symptom: feeling full after eating just a small amount of food. This doesn't mean it is OVCA.
I do not advocate using the ER in place of a doctor but sounds like a trip might expedite the process. I was dx in the ER....after pain and bloating was unbearable.
What is the test that gave a false positive?
You are right to pursue this.
Mary

Lea19

Need Help
Sissy,

First I want to say that your friend is very lucky to have you in her life! I wish I could say that her symptoms don't sound like OVCA. But they don't sound good. I don't understand waiting for funding? I hope you'll come back and fill us in on that. By a false negative are you talking about a CA125?

I agree with the others. As hard as it might be for you...try your hardest to be strong for your friend. Let her know you'll be there to support her whatever comes her way. I totally realize how scary it is to think of Ovarian Cancer. My tumor grew into my bowel and colon too. Yet I am still here 9 years later!

Hang in there!

Sissygirl

Lea19 said:

Need Help
Sissy,

First I want to say that your friend is very lucky to have you in her life! I wish I could say that her symptoms don't sound like OVCA. But they don't sound good. I don't understand waiting for funding? I hope you'll come back and fill us in on that. By a false negative are you talking about a CA125?

I agree with the others. As hard as it might be for you...try your hardest to be strong for your friend. Let her know you'll be there to support her whatever comes her way. I totally realize how scary it is to think of Ovarian Cancer. My tumor grew into my bowel and colon too. Yet I am still here 9 years later!

Hang in there!

Thank you so much for all
Thank you so much for all your replies. I will ask her to come here so she can explain things better. Love and Light...Sissy

Ps...Just wanted to say that I'm sorry you guys have gone thru OC...and grateful that you are all here to help us.

ikrav

I am Sissygirls friend
Yes, I am Very, VERY Lucky to have my SissyGirl as my friend.
I made an appointment thru Planned Parenthood because I was having weird sporadic pain in my lower mid to a little to the left pelvic region. They sent me for a colonoscopy. the GI Dr. removed 2 polyps and found a growth or protrusion that he said he'd never seen before, therefor because he didn't know what it was attached to, didn't biopsy it. I was sent for a CT scan, and his office scheduled me with a GYN. The CT scan showed a 7 cm pelvic mass possibly originating from the left ovary. I went to my appointment with the Gyno. He, by the way was very abrupt, and when I had told him that I was working on getting medicaid, told me that "then we have a problem" ..., I told him that I expected to hear something soon, and I didn't want to delay my care. He had me take a blood test, a CA-125 and sent me to have an abdominal and trans vaginal ultrasound. My second appointment with him, he came in, walked up to me, stared at me, sat in his rolling chair, rolled up to me sitting on the exam table, took my hands and told me that we needed to talk. The change in his demeanor from the last appointment freaked me out. Anyhow, the blood test came back negative, And I said to him, well thats really good then. And he said, yes, possibly. He said that that test is not conclusive, but the bigger concern here is that the ultrasound however did not look good, and that the pelvic mass was a over 8 cm now, and that he wanted me to see a GYN/ONCO ASAP. Since then, I got approved for Medicaid yesterday actually. I asked to have the Gyno's referral be sent to the GYN/ONCO. I am waiting for St. Peters Hospital in Albany, NY to call me with an appointment. I have lost weight, but I have also been stressing. I do fill up quick when eating, but I figure its because my stomach may be shrinking from stress and not as much eating. I still have occasional pain there, and I do urinate a lot. And, yes, constipation and bloating is an issue. I really want to know what "doesn't look good" meant. Can a radiologist interpret the images they read as cancerous or not. Does a pelvic mass (by the way, the Gyno did say it is Not a fluid filled cyst) have certain characteristics that would give the radiologist the impression of cancer? Its now 11:30 here. I know that St. Peters received my records yesterday. If I don't hear from them by 2pm, I am calling them. I love my Sissygirl...and thank her for reaching out to help me. Thank you for thoughts and sharing your experiences. I appreciate any information I can get.

ikrav

lulu1010 said:

Hope this helps
I am wondering what kind of test he did that was negative? Anyway, I can tell you I had many tests by many doctors and nothing was found. My symptoms were chronic abdominal pain and constipation and eventually loss of weight. I am a nurse and even though I knew most of the doctors fairly well they were beginning to think I was a nut case. A specialized CT scan finally found "thickening" in an area that the pill camera showed a blockage ( was told the test was negative and a month later the doc told me the pill never passed thru!). After that a colonoscopy showed a tumor growing into my colon from the outside. CA-125 was 149 and I was diagnosed with Primary Peritoneal Cancer. Like Tina it was just like someone threw rice over my abdomen with no real tumors except the small one into the colon.
If she is in the states she could apply for medicaid if she qualifies or at least talk with the social worker at the hospital for other options. That is their job (in my opinion anyway). It is my belief (which could be very wrong) that most hospitals have to treat at least initially regardless of ability to pay and I would hope that there is a doctor out there that would work out a payment plan or something to at least get a diagnosis while you pursue other options.
Sounds like the mass needs biopsied and perhaps a CA-125 (blood test that is indicatie of ovarian cancer) would be helpful.
Hopefully it is just a cyst or some other benign growth but you are right it needs checked out. It is not my intention to alarm you or give medical advice. I just want to share my experience because I know so well the fear with this kind of thing and hope you can get the proper treatment for her. We will keep her in our prayers and please keep us posted. I am so glad she has such a good friend.

Sissygirls friend
I did this wrong the first time...I have corrected it.

Hissy_Fitz

ikrav said:

I am Sissygirls friend
Yes, I am Very, VERY Lucky to have my SissyGirl as my friend.
I made an appointment thru Planned Parenthood because I was having weird sporadic pain in my lower mid to a little to the left pelvic region. They sent me for a colonoscopy. the GI Dr. removed 2 polyps and found a growth or protrusion that he said he'd never seen before, therefor because he didn't know what it was attached to, didn't biopsy it. I was sent for a CT scan, and his office scheduled me with a GYN. The CT scan showed a 7 cm pelvic mass possibly originating from the left ovary. I went to my appointment with the Gyno. He, by the way was very abrupt, and when I had told him that I was working on getting medicaid, told me that "then we have a problem" ..., I told him that I expected to hear something soon, and I didn't want to delay my care. He had me take a blood test, a CA-125 and sent me to have an abdominal and trans vaginal ultrasound. My second appointment with him, he came in, walked up to me, stared at me, sat in his rolling chair, rolled up to me sitting on the exam table, took my hands and told me that we needed to talk. The change in his demeanor from the last appointment freaked me out. Anyhow, the blood test came back negative, And I said to him, well thats really good then. And he said, yes, possibly. He said that that test is not conclusive, but the bigger concern here is that the ultrasound however did not look good, and that the pelvic mass was a over 8 cm now, and that he wanted me to see a GYN/ONCO ASAP. Since then, I got approved for Medicaid yesterday actually. I asked to have the Gyno's referral be sent to the GYN/ONCO. I am waiting for St. Peters Hospital in Albany, NY to call me with an appointment. I have lost weight, but I have also been stressing. I do fill up quick when eating, but I figure its because my stomach may be shrinking from stress and not as much eating. I still have occasional pain there, and I do urinate a lot. And, yes, constipation and bloating is an issue. I really want to know what "doesn't look good" meant. Can a radiologist interpret the images they read as cancerous or not. Does a pelvic mass (by the way, the Gyno did say it is Not a fluid filled cyst) have certain characteristics that would give the radiologist the impression of cancer? Its now 11:30 here. I know that St. Peters received my records yesterday. If I don't hear from them by 2pm, I am calling them. I love my Sissygirl...and thank her for reaching out to help me. Thank you for thoughts and sharing your experiences. I appreciate any information I can get.

Actually, false positives
Actually, false positives are more common with the CA125 test than false negatives. But because some women do not react to the enzyme, so false negatives are possible. The other thing to remember is that the test is not accurate until the cancer reaches stage II, so even if you do have OC, it may be too early to detect with a blood test. And that, my dear, is a ver, very good thing. Stage I has a 90% chance, with treatment, of never coming back.

Not all ovarian masses are malignant, and not all pelvic masses are ovarian. Ovarian cancer is really not all that common. The only way to tell for sure, however, is with a biopsy. If you had ascites (fluid in the abdomen) they could take a sample of that and test for cancer, but since you don't (another very, very good sign), they may want to open you up.

At 8cm your tumor is about the size of a tennis ball. Fibroids grow quickly and grow much bigger than that. You might have fibroid tumors, which are almost always non-malignant.

Please come back and let us know what happens at this appointment.

Carlene

ikrav

Hissy_Fitz said:

Actually, false positives
Actually, false positives are more common with the CA125 test than false negatives. But because some women do not react to the enzyme, so false negatives are possible. The other thing to remember is that the test is not accurate until the cancer reaches stage II, so even if you do have OC, it may be too early to detect with a blood test. And that, my dear, is a ver, very good thing. Stage I has a 90% chance, with treatment, of never coming back.

Not all ovarian masses are malignant, and not all pelvic masses are ovarian. Ovarian cancer is really not all that common. The only way to tell for sure, however, is with a biopsy. If you had ascites (fluid in the abdomen) they could take a sample of that and test for cancer, but since you don't (another very, very good sign), they may want to open you up.

At 8cm your tumor is about the size of a tennis ball. Fibroids grow quickly and grow much bigger than that. You might have fibroid tumors, which are almost always non-malignant.

Please come back and let us know what happens at this appointment.

Carlene

In reply
Carlene,

I do not know if I have ascites or not... that remains to be seen. In my research on CA 125, I have found that almost 20 percent of women who have ovarian cancer do not ever have elevated CA-125. That is why it is ESSENTIAL to use CA-125 only as part of a diagnostic regiment that includes transvaginal sonography and a rectovaginal pelvic exam.
Thank you for your reply

sitchy57

ikrav said:

In reply
Carlene,

I do not know if I have ascites or not... that remains to be seen. In my research on CA 125, I have found that almost 20 percent of women who have ovarian cancer do not ever have elevated CA-125. That is why it is ESSENTIAL to use CA-125 only as part of a diagnostic regiment that includes transvaginal sonography and a rectovaginal pelvic exam.
Thank you for your reply

CA125
Yes the CA125 test is not all that acurate with ovarian cancer. I was diag. with ovarian, uterine and appendix cancers and my CA125 test was at 7. I also had the ultra sound on the outside and the transvaginal ultra sound. Both those were not conclusive so they had to do a D and C and a laproscopic procedure. The end results was a debulking hyst. where the appendix cancer was also found.

lauriejw

ikrav said:

I am Sissygirls friend
Yes, I am Very, VERY Lucky to have my SissyGirl as my friend.
I made an appointment thru Planned Parenthood because I was having weird sporadic pain in my lower mid to a little to the left pelvic region. They sent me for a colonoscopy. the GI Dr. removed 2 polyps and found a growth or protrusion that he said he'd never seen before, therefor because he didn't know what it was attached to, didn't biopsy it. I was sent for a CT scan, and his office scheduled me with a GYN. The CT scan showed a 7 cm pelvic mass possibly originating from the left ovary. I went to my appointment with the Gyno. He, by the way was very abrupt, and when I had told him that I was working on getting medicaid, told me that "then we have a problem" ..., I told him that I expected to hear something soon, and I didn't want to delay my care. He had me take a blood test, a CA-125 and sent me to have an abdominal and trans vaginal ultrasound. My second appointment with him, he came in, walked up to me, stared at me, sat in his rolling chair, rolled up to me sitting on the exam table, took my hands and told me that we needed to talk. The change in his demeanor from the last appointment freaked me out. Anyhow, the blood test came back negative, And I said to him, well thats really good then. And he said, yes, possibly. He said that that test is not conclusive, but the bigger concern here is that the ultrasound however did not look good, and that the pelvic mass was a over 8 cm now, and that he wanted me to see a GYN/ONCO ASAP. Since then, I got approved for Medicaid yesterday actually. I asked to have the Gyno's referral be sent to the GYN/ONCO. I am waiting for St. Peters Hospital in Albany, NY to call me with an appointment. I have lost weight, but I have also been stressing. I do fill up quick when eating, but I figure its because my stomach may be shrinking from stress and not as much eating. I still have occasional pain there, and I do urinate a lot. And, yes, constipation and bloating is an issue. I really want to know what "doesn't look good" meant. Can a radiologist interpret the images they read as cancerous or not. Does a pelvic mass (by the way, the Gyno did say it is Not a fluid filled cyst) have certain characteristics that would give the radiologist the impression of cancer? Its now 11:30 here. I know that St. Peters received my records yesterday. If I don't hear from them by 2pm, I am calling them. I love my Sissygirl...and thank her for reaching out to help me. Thank you for thoughts and sharing your experiences. I appreciate any information I can get.

The ultrasound tech that did
The ultrasound tech that did my transvaginal ultrasound did say that a fluid filled cyst is better than a solid cyst. My cyst was mostly solid with a little fluid. My gyno thought it was an endometrioma. My CA125 was normal. After surgery we found it to be an endometriod adenocarcinoma stage 1c. I hope you get some answers soon from the doctors. Waiting can be so hard. My thoughts and prayers are with you!