Time period between detection and biopsy

tceleste

I had an MRI hips which showed a tumor on my left ovary. I was given the info by phone by the receptionist and faxed a few doctors to see and an order for a pelvic us. The first gyne/oncologist I saw immediately decided I needed robotic surgery. I am seventy. We planned it in two weeks. In the meantime I began wondering why there would be no other workup. When I questioned his nurse she was very abrupt and told me he could see all he needed to see with the robot. I decided to go to a teaching hospital instead and they ordered a chest, abdomen and pelvis CT and a colonoscopy and told me to get these ASAP and then make a follow up appointment. The thing I was not told was that the very week I saw the gyne/oncologist she left for a month vacation but did not tell me. I had the tests done within a week and called to make an appointment. I did not get any return call. I kept calling because by this time it was five weeks since the original MRI. Finally after I called and made threatening statements her nurse called and told me she had left for four week vacation. I went ahead and made an appointment with her anyway because I did not want to go to another doctor and get in line. I just saw her last week and she scheduled my biopsy/surgery for three weeks later. This will make the time between my MRI that found the mass to biopsy/surgery a total of not quite 3 months. I am so happy I found the mass at 5 cm but I am so disturbed that I had to wait so long for a biopsy. I have worked in the medical field (nursing degree and medical transcription)and it never occurred to me that this could happen. I assumed everyone got in there and found out what it was. Knowing what I know I guess I should have gone ahead and let the first doctor take the mass out, but I did not feel that for my age, I was getting enough work up in case there was a lot of cancer and they needed to do extensive surgery. Does everyone have to wait three months for a second opinion and biospy?

I would like to hear other people's experience.

kikz

I was ill and saw my primary on 2/20/2010,
she had me take laxatives for a couple of weeks until I complained so much she set up a telephone consult with a gastro doc. He set up a ct scan for 3/16/2010 and I found out that day I had ov/ca. I never had a biopsy. I had three rounds of chemo, gyn/onc/surgeon said if it didn't shrink he couldn't operate. Had surgery on 6/21/2010 followed by three more rounds of chemo. I've read so many horror stories on this board about how long it takes some women to even be diagnosed.

It is shameful.

I wish you good luck and be assertive.

Karen

Radioactive34

kikz said:

I was ill and saw my primary on 2/20/2010,
she had me take laxatives for a couple of weeks until I complained so much she set up a telephone consult with a gastro doc. He set up a ct scan for 3/16/2010 and I found out that day I had ov/ca. I never had a biopsy. I had three rounds of chemo, gyn/onc/surgeon said if it didn't shrink he couldn't operate. Had surgery on 6/21/2010 followed by three more rounds of chemo. I've read so many horror stories on this board about how long it takes some women to even be diagnosed.

It is shameful.

I wish you good luck and be assertive.

Karen

I totally agree with Karen,
I totally agree with Karen, be assertive. I went into urgent care for what was thought to be an appendix going bad. The doctor ordered an ultrasound. The radiologist recognized the mass as cancerous. He called it then and there. After the ultrasound, I knew in less than 30 minutes that I was dealing with some type of cancer. What type of cancer it was, would not be known until they actually took out the tumor. They then called the ob/gyn on call. The ob/gyn on call ordered a flurry of blood tests.

I was in surgery, with an onc ob/gyn, in less than two weeks from the time I saw the urgent care doctor. Considering that I had 2 doctors visit with referrals before surgery, the speed in which I received care was amazing.

Though I could have sabotaged my care. I was soft pedaling the pain and mental angst prior to surgery. The assisting surgeons had conflicting schedules and wanted to push surgery out another 2 weeks. I was sort of numb. I would have gone with that. My husband said no and the onc ob/gyn said no problem, someone else can assist.

Had he not been assertive my case may have been much worse. Be assertive and advocate for yourself. Also learn as much as you can about what you may have. That way when you talk to the doc it does not sound like gibberish coming out of their mouth. In the numb state I was in sometimes gibberish was all I heard.

I heard gibberish until the week prior to chemo. When some ladies mentioned the port. That snapped me out so fast....though that was 6 weeks after surgery.

tceleste

kikz said:

I was ill and saw my primary on 2/20/2010,
she had me take laxatives for a couple of weeks until I complained so much she set up a telephone consult with a gastro doc. He set up a ct scan for 3/16/2010 and I found out that day I had ov/ca. I never had a biopsy. I had three rounds of chemo, gyn/onc/surgeon said if it didn't shrink he couldn't operate. Had surgery on 6/21/2010 followed by three more rounds of chemo. I've read so many horror stories on this board about how long it takes some women to even be diagnosed.

It is shameful.

I wish you good luck and be assertive.

Karen

Thanks
I feel so helpless anyway and the fact that my mass might be growing has made that helplessness worse. I kind of want to do a biopsy myself. I keep thinking that if everyone would just realize that just a little more effort on their part would make a world of difference my experience might be different. But I do have to be diplomatic since my life is literally in their hands. There seems to be a lot of drama going on interpersonally that could be prevented by a little honesty.

Thanks for your encouragement. Thank goodness for the people who do wish me the best. Good luck to you as well.

Celeste

Radioactive34

tceleste said:

Thanks
I feel so helpless anyway and the fact that my mass might be growing has made that helplessness worse. I kind of want to do a biopsy myself. I keep thinking that if everyone would just realize that just a little more effort on their part would make a world of difference my experience might be different. But I do have to be diplomatic since my life is literally in their hands. There seems to be a lot of drama going on interpersonally that could be prevented by a little honesty.

Thanks for your encouragement. Thank goodness for the people who do wish me the best. Good luck to you as well.

Celeste

No problem, we are all in
No problem, we are all in the same boat here. We are all supportive of each other. This place is a great sounding board. The ladies here are just wonderful.

carolenk

Radioactive34 said:

No problem, we are all in
No problem, we are all in the same boat here. We are all supportive of each other. This place is a great sounding board. The ladies here are just wonderful.

Wating for surgery
Dear Celeste

It sounds like whatever you are dealing with is not aggressive--otherwise, you would be really miserable by now with fluid accumulating in your belly or the mass pressing on something. There is a common opinion that ovarian cancer grows slowly in elderly women because of the naturally slower metabolism--so your age is on your side in that respect. A mass that measures 5 cm is right at the beginning of where they draw the line to say that there is a high suspicion of cancer. You may have had a complex cyst for YEARS and there is a good chance that the mass is BENIGN. I would like to know what your symptoms were that led you to be tested in the first place--or the mass was found incidentally.

You haven't mentioned blood work--you need a CA-125 blood test done. It may or may not be elevated. Some women have cancer but their cancer doesn't raise the CA-125. Most of us DO show a high CA-125 when the cancer is active or recurring. The robotic surgery may have been recommended because you are asymptomatic...unfortunately, I have heard too many stories of women having to go back for a second surgery because they thought they were dealing with a non-cancerous condition. Trust your instincts on this.

You have already gotten a second opinion but I would opt for NOT doing the robotic surgery. Ovarian cancer has a nasty habit of crawling all over your intestines, liver, spleen, etc. Kind of like a splatter effect of tiny malignant implants. Debulking surgery cannot be done robotically--the surgeon needs to get inside and feel the peritoneal lining for grittiness which would indicate there is cancer spread in the lining. Maybe you did have a CA-125 drawn and the number was low or normal and that is why the robotic surgery was recommended. It sounds like the gyn/onc thinks you are probably dealing with something benign.

What can you do while you are waiting: I can think of two things. First, do your best to put your fears out of your mind--tell yourself "If this is cancer, I'm going to be a survivor." Stop eating sugar as sugar is fuel for cancer to grow on. There is a lot of discussion on this board about diet that hopefully will help you. If nothing else, it will give you something that you can take action about.

The second thing is to ask for your friends and family to pray for you. I don't know where your spiritual orientation is--all I know is PRAYER HELPS. The results of research on the positive effects of prayer can be found in books written by Larry Dossey, MD. The most compelling evidence is the effect prayer has on the growth of BACTERIA--that ain't no placebo effect.

Best wishes to you. Please come back and let us know how you are doing after your surgery. We are all hoping your mass is just a cyst. You are in my prayers.

Carolen

Tethys41

carolenk said:

Wating for surgery
Dear Celeste

It sounds like whatever you are dealing with is not aggressive--otherwise, you would be really miserable by now with fluid accumulating in your belly or the mass pressing on something. There is a common opinion that ovarian cancer grows slowly in elderly women because of the naturally slower metabolism--so your age is on your side in that respect. A mass that measures 5 cm is right at the beginning of where they draw the line to say that there is a high suspicion of cancer. You may have had a complex cyst for YEARS and there is a good chance that the mass is BENIGN. I would like to know what your symptoms were that led you to be tested in the first place--or the mass was found incidentally.

You haven't mentioned blood work--you need a CA-125 blood test done. It may or may not be elevated. Some women have cancer but their cancer doesn't raise the CA-125. Most of us DO show a high CA-125 when the cancer is active or recurring. The robotic surgery may have been recommended because you are asymptomatic...unfortunately, I have heard too many stories of women having to go back for a second surgery because they thought they were dealing with a non-cancerous condition. Trust your instincts on this.

You have already gotten a second opinion but I would opt for NOT doing the robotic surgery. Ovarian cancer has a nasty habit of crawling all over your intestines, liver, spleen, etc. Kind of like a splatter effect of tiny malignant implants. Debulking surgery cannot be done robotically--the surgeon needs to get inside and feel the peritoneal lining for grittiness which would indicate there is cancer spread in the lining. Maybe you did have a CA-125 drawn and the number was low or normal and that is why the robotic surgery was recommended. It sounds like the gyn/onc thinks you are probably dealing with something benign.

What can you do while you are waiting: I can think of two things. First, do your best to put your fears out of your mind--tell yourself "If this is cancer, I'm going to be a survivor." Stop eating sugar as sugar is fuel for cancer to grow on. There is a lot of discussion on this board about diet that hopefully will help you. If nothing else, it will give you something that you can take action about.

The second thing is to ask for your friends and family to pray for you. I don't know where your spiritual orientation is--all I know is PRAYER HELPS. The results of research on the positive effects of prayer can be found in books written by Larry Dossey, MD. The most compelling evidence is the effect prayer has on the growth of BACTERIA--that ain't no placebo effect.

Best wishes to you. Please come back and let us know how you are doing after your surgery. We are all hoping your mass is just a cyst. You are in my prayers.

Carolen

CA-125, Copper and zinc
If you have had a CA-125 blood test and the results are in the normal range, but you are still concerned about malignancy, you can have your blood tested for serum copper and zinc levels. If your copper is above 150mcg and your zinc is lower than 90 mcg, there is most likely malignancy involved.
Hoping for the best.

tceleste

Tethys41 said:

CA-125, Copper and zinc
If you have had a CA-125 blood test and the results are in the normal range, but you are still concerned about malignancy, you can have your blood tested for serum copper and zinc levels. If your copper is above 150mcg and your zinc is lower than 90 mcg, there is most likely malignancy involved.
Hoping for the best.

tests, etc
Thank you for all your input. I did have a CA-125, it was 19. I am not going to have robotic surgery. I am glad I went ahead and saw another doctor. He did no other tests. He just went by the original MRI that found the mass incidentally. I alwasy have an abnormal C-reactive protein and sed rate and due to the fact I have inflammatory arthritis, which led to the MRI, and I take pain medication I would not have noticed symptoms until they were very gross. I did notice that I had been getting a big belly and that my digestive process had changed. Still that could be simply not exercising due to the pain of the arthritis. The colonoscopy was helpful because they did find a precancerous polyp and removed it. I just had blood drawn and the next time I will ask to get the zinc tested. Also thanks for the advice about sugar. Goodbye sugar. I had cut back on it but now it will all be gone. The new doctor at the teaching hospital says just what you said above. She is doing an open laparotomy so she can look and feel for any spread. I do feel better now but this certainly has been an eye opener especially for someone who has worked in hospitals for thirty years.

Thanks. I will get back after I have the surgery.


God bless