First visit with the Oncologist.....and a question for all you vets.
My tumor is the size of a softball. It is too large to determine, from the ultrasound, if it is attached to one ovary, both ovaries, or neither ovary. There is also some ascites. Speaking of which, I have gained 4 pounds in the last week, and I promise it's not from over-eating. I cannot wear anything except athletic pants.
All I could get out of the Oncologist was "I am concerned". But I have read the stats and I know that a tumor that size, with ascides, in a woman over 60, is malignant about 60% of the time. I am just hoping that it has not spread beyond my ovaries.
The game plan:
Day after tomorrow I get a CT scan done - all the way from my chest to the end of the road, so to speak.
Sometime between tomorrow and next Tuesday (the 29th) someone will draw blood and run a CA 125 test. The Oncology nurse promised me that if I call her 24 hours after they draw the blood, she will give me the number. It it's over 65, I almost certainly have ovarian cancer.
Sept 29th I will have surgery. As of now he is calling it "exploratory", but both ovaries and the tumor are going bye bye, plus anything else indicated by the other tests and the biopsy, not including things like liver and pancreas.
Big Question.........does the size of the tumor generally indicate whether or not the disease has spread?
Comments
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good question
I had tumors on both ovaries, at 7cm and 4 cm. The CT and MRI was suspicious but they said it was 50/50 that they were malignant. When they opened me up, it had spread and I was staged at 3C. I have also heard of gals having huge tumors 12cm or so and it being contained, and only being staged at 1 or 2. Don't have any stats but just from all the reading I have done these last 2 years, I think it could go either way. But, the fact that you have ascides is suspicious to me.
Sounds like you have a good plan, and you seem surprisingly calm, cool and collected about everything.
I hope and pray that you don't have cancer, but if that is what it is, please know we are all here for you.
Warm hugs,
kathleen:)0 -
Calm? I wish.........kayandok said:good question
I had tumors on both ovaries, at 7cm and 4 cm. The CT and MRI was suspicious but they said it was 50/50 that they were malignant. When they opened me up, it had spread and I was staged at 3C. I have also heard of gals having huge tumors 12cm or so and it being contained, and only being staged at 1 or 2. Don't have any stats but just from all the reading I have done these last 2 years, I think it could go either way. But, the fact that you have ascides is suspicious to me.
Sounds like you have a good plan, and you seem surprisingly calm, cool and collected about everything.
I hope and pray that you don't have cancer, but if that is what it is, please know we are all here for you.
Warm hugs,
kathleen:)
I am a basket case. I started crying during Mass on Sunday and of course tears are as contagious as cancer. My poor daughter had to leave until she could pull herself together.
I'm grouchy; I yell at everyone. And my first impression of the oncologist was not warm and fuzzy. He's very noncommittal, for one thing. No percentages, no stats, no "what ifs". Says he doesn't "play guessing games".
I said I hated having to wait 8 days for the surgery because I am in so much pain and having to rely more and more on pain pills, he said, "Where did you get pain pills?" I told him from my PCP and he wanted to know what they were, etc. I was a little offended by his attitude. Why shouldn't I have access to pain relievers? I have a ton of stuff in my belly that doesn't belong there and it HURTS.
I agree with you, Kathleen. Larger tumor, ascides, pain, patient over 60.......does not sound good. I read that if the CA 125 is over 65 and there is a definite tumor present, the chance of malignancy is 90%. I am very glad that I will know the number before surgery. I don't want to go to sleep wondering and hoping and wake up and be hugely disappointed.0 -
Tumor size
Hi there,
My Tumor was the size of a coconut (yes, a coconut). Though it had attached itself to several organs and even some muscle tissue, there was no spreading. My doctor (a saint!) did multiple biopsies and took 8 lymph nodes. All came back clean, thank God, so I don't necessarily think that tumor size will indicate the liklihood that it has spread. The best of luck to you!!!0 -
Tell you Doctor.Hissy_Fitz said:Calm? I wish.........
I am a basket case. I started crying during Mass on Sunday and of course tears are as contagious as cancer. My poor daughter had to leave until she could pull herself together.
I'm grouchy; I yell at everyone. And my first impression of the oncologist was not warm and fuzzy. He's very noncommittal, for one thing. No percentages, no stats, no "what ifs". Says he doesn't "play guessing games".
I said I hated having to wait 8 days for the surgery because I am in so much pain and having to rely more and more on pain pills, he said, "Where did you get pain pills?" I told him from my PCP and he wanted to know what they were, etc. I was a little offended by his attitude. Why shouldn't I have access to pain relievers? I have a ton of stuff in my belly that doesn't belong there and it HURTS.
I agree with you, Kathleen. Larger tumor, ascides, pain, patient over 60.......does not sound good. I read that if the CA 125 is over 65 and there is a definite tumor present, the chance of malignancy is 90%. I am very glad that I will know the number before surgery. I don't want to go to sleep wondering and hoping and wake up and be hugely disappointed.
Hi again, I forgot to tell you that my friends CA125 levels were twice as high as mine and she was cancer free. If you go online you will see that many things can elevate these levels and it's not a very good test. I read that it's a better test for people who've had O.cancer as it can indicate a return of the cancer. Menopause can elevate it, as can fibroid tumors and sometimes it's elevated for no apparent reason at all.
I also think you should tell your doctor that you don't care for his attitude. I was very lucky to have an exceptional, caring man who does this kind of surgery as a lifes calling. Your doctor sounds like a jerk. My gyno is like that and I complained about her. Next time I saw her she was much nicer. There is no reason he can't be kind to you, especially given what you are going through. They are just people with a few years more education than most of us.0 -
Thank you, air and fire.....a couple of questions, if you pleaseairandfire321 said:Tumor size
Hi there,
My Tumor was the size of a coconut (yes, a coconut). Though it had attached itself to several organs and even some muscle tissue, there was no spreading. My doctor (a saint!) did multiple biopsies and took 8 lymph nodes. All came back clean, thank God, so I don't necessarily think that tumor size will indicate the liklihood that it has spread. The best of luck to you!!!
Did you have pain before you were diagnosed? My pain started about two weeks ago, kind of came and went and came again. It has steadily increased since then and is now almost constant, except when I am on Vicodin, which I am now taking two at a time, about four times a day.
Also did you have ascides? I don't know if it's the tumor growing and causing my belly to get bigger and bigger, or if the ascides is getting worse. The Oncologist said the ultra sound report noted, "some fluid". I tried to get more specific info, but he changed the subject.0 -
This comment has been removed by the ModeratorHissy_Fitz said:Thank you, air and fire.....a couple of questions, if you please
Did you have pain before you were diagnosed? My pain started about two weeks ago, kind of came and went and came again. It has steadily increased since then and is now almost constant, except when I am on Vicodin, which I am now taking two at a time, about four times a day.
Also did you have ascides? I don't know if it's the tumor growing and causing my belly to get bigger and bigger, or if the ascides is getting worse. The Oncologist said the ultra sound report noted, "some fluid". I tried to get more specific info, but he changed the subject.0 -
Sorry,Hissy_Fitz said:Calm? I wish.........
I am a basket case. I started crying during Mass on Sunday and of course tears are as contagious as cancer. My poor daughter had to leave until she could pull herself together.
I'm grouchy; I yell at everyone. And my first impression of the oncologist was not warm and fuzzy. He's very noncommittal, for one thing. No percentages, no stats, no "what ifs". Says he doesn't "play guessing games".
I said I hated having to wait 8 days for the surgery because I am in so much pain and having to rely more and more on pain pills, he said, "Where did you get pain pills?" I told him from my PCP and he wanted to know what they were, etc. I was a little offended by his attitude. Why shouldn't I have access to pain relievers? I have a ton of stuff in my belly that doesn't belong there and it HURTS.
I agree with you, Kathleen. Larger tumor, ascides, pain, patient over 60.......does not sound good. I read that if the CA 125 is over 65 and there is a definite tumor present, the chance of malignancy is 90%. I am very glad that I will know the number before surgery. I don't want to go to sleep wondering and hoping and wake up and be hugely disappointed.
to have mis-read your post. You sounded so calm. That fact that you are not is totally NORMAL and we have all been there many times. Your doc doesn't sound so nice, but he is getting you in pretty quickly for surgery it sounds like. Is he the surgeon? Surgeons are usually not the warm and fuzzy personalities and you really don't want them to be, on the other hand...... warm and fuzzy sure feels much better when you are facing this gunk.
Waiting is actually more painful than surgery or chemo for me. Hang in there, you will know soon. The only thing that I can really do when I am in "limbo" and have to wait, besides pray and focus is to cook and clean up a storm to get ready for when I come home. It makes me feel like I am caring for myself and family and preparing for what is ahead. I have had 2 major surgeries and 2 minor ones in the last 2 years.
Warm hugs and prayers,
kathleen
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Thank you, Nancyunknown said:This comment has been removed by the Moderator
I am so glad to know that I'm not a total wimp after all. The Oncologist really made me feel like a kid standing on the street corner, trying to score drugs. I never ask for pain meds. I did 18 hours of hard labor without so much as an aspirin, but two weeks of unrelenting pain calls for a little pharmaceutical intervention, if you ask me.
It is a statistical fact, by the way, that men ask for, and are prescribed, pain meds much more frequently than women.0 -
Hi Nancy,Hissy_Fitz said:Thank you, Nancy
I am so glad to know that I'm not a total wimp after all. The Oncologist really made me feel like a kid standing on the street corner, trying to score drugs. I never ask for pain meds. I did 18 hours of hard labor without so much as an aspirin, but two weeks of unrelenting pain calls for a little pharmaceutical intervention, if you ask me.
It is a statistical fact, by the way, that men ask for, and are prescribed, pain meds much more frequently than women.
I don't know if it
Hi Nancy,
I don't know if it helps but my tumor was the size of a large cantaloupe and I had some sort of mass in my uterus both were 'hyperechoic' weich they told me means dense or solid, my belly was quite large to say the least...(I could send you some before pics if you want to see!!), my PCP was fairly certain that I had Ovarian Cancer.
My husband and I spent the moments in between in a daze, in tears, & basically a bit freaked out. I had the ultrasounds on Thursday and was sent to the Oncologist on Monday and she did surgery on Thursday...rushed me right along and the entire time I was still wondering....I know that is maddening, frustrating and all in all a CRAZY time...all this to say the odds seemed stacked against me, I even tried to bribe the Gyn/Onc with my scarf that she said was pretty into giving me at least a small idea of what we should expect~nothing, just solemn, I am so sorry stuff.
All this to say, my beaming Oncologist informed my husband during the surgery that I was 'Borderline, not totally benign but not totally malignant'. So there is still hope.
Prayer, I believe is huge!!!!
So please know that we are praying for a great report from you when you are up and typing!
XOX-Michelle0 -
Michelle......I am so encouraged by your storymonsta927 said:Hi Nancy,
I don't know if it
Hi Nancy,
I don't know if it helps but my tumor was the size of a large cantaloupe and I had some sort of mass in my uterus both were 'hyperechoic' weich they told me means dense or solid, my belly was quite large to say the least...(I could send you some before pics if you want to see!!), my PCP was fairly certain that I had Ovarian Cancer.
My husband and I spent the moments in between in a daze, in tears, & basically a bit freaked out. I had the ultrasounds on Thursday and was sent to the Oncologist on Monday and she did surgery on Thursday...rushed me right along and the entire time I was still wondering....I know that is maddening, frustrating and all in all a CRAZY time...all this to say the odds seemed stacked against me, I even tried to bribe the Gyn/Onc with my scarf that she said was pretty into giving me at least a small idea of what we should expect~nothing, just solemn, I am so sorry stuff.
All this to say, my beaming Oncologist informed my husband during the surgery that I was 'Borderline, not totally benign but not totally malignant'. So there is still hope.
Prayer, I believe is huge!!!!
So please know that we are praying for a great report from you when you are up and typing!
XOX-Michelle
I had my CT scan today and the tech told me that I had a LOT of ascites. In fact, she stressed it so thoroughly, it totally freaked me out. I cried all the way home. Called my vet and asked if they would help find a home for my little Shih Tzu (she has a chronic auto immune disorder and has to take meds every day). Found something on the internet about advanced ascites being associated with end-stage ovarian cancer. Cried some more.
My surgery is next Tuesday and I hope my nerves hold out that long.
Like you, Michelle, I begged my Gyn/Onc to give me some inkling of what he thought the outcome would be, but I got nothing. He said, "I am not going to tell you something just to make you happy."
Was your distended belly due to the size of your tumor, or to ascites? Did you have any pain? My pain is getting worse by the day.0 -
AscitesHissy_Fitz said:Michelle......I am so encouraged by your story
I had my CT scan today and the tech told me that I had a LOT of ascites. In fact, she stressed it so thoroughly, it totally freaked me out. I cried all the way home. Called my vet and asked if they would help find a home for my little Shih Tzu (she has a chronic auto immune disorder and has to take meds every day). Found something on the internet about advanced ascites being associated with end-stage ovarian cancer. Cried some more.
My surgery is next Tuesday and I hope my nerves hold out that long.
Like you, Michelle, I begged my Gyn/Onc to give me some inkling of what he thought the outcome would be, but I got nothing. He said, "I am not going to tell you something just to make you happy."
Was your distended belly due to the size of your tumor, or to ascites? Did you have any pain? My pain is getting worse by the day.
I never had them so have no experience. However, lots of ladies here have and they seem to all have pain with them. Not true about "end stage ovarian cancer" with them, I think. You can do a search on the CSN by clicking on the content in the upper right hand corner and see what has been posted. It took two months from diagnosis for me to get out of the cellar pit of emotion. l know how overwhelming all of this is to you at this time. Lots are being thrown at you all at once and you need to keep reminding yourself to roll with the punches. IT WILL GET BETTER!!!. I like a doctor to be frank with me. Are you taking someone with you to take notes during your appointments so that you can re-read them at home later. You would be surprised at how jumbled words get at this time. Get out and do something fun this weekend. (((HUGS))) Saundra0 -
Hi,Hissy_Fitz said:Michelle......I am so encouraged by your story
I had my CT scan today and the tech told me that I had a LOT of ascites. In fact, she stressed it so thoroughly, it totally freaked me out. I cried all the way home. Called my vet and asked if they would help find a home for my little Shih Tzu (she has a chronic auto immune disorder and has to take meds every day). Found something on the internet about advanced ascites being associated with end-stage ovarian cancer. Cried some more.
My surgery is next Tuesday and I hope my nerves hold out that long.
Like you, Michelle, I begged my Gyn/Onc to give me some inkling of what he thought the outcome would be, but I got nothing. He said, "I am not going to tell you something just to make you happy."
Was your distended belly due to the size of your tumor, or to ascites? Did you have any pain? My pain is getting worse by the day.
I had constant pain,
Hi,
I had constant pain, sometimes debilitating. I believe, (might find out differently with the final report) that my bulge had more to do with my tumor than ascites.
I think that I was really fortunate that everything happened so fast, it did not give me so much time to think. Not that I didn't, believe me I had sleepless nights and LONG days.
I did finally get to the point on Friday before my surgery on Monday where I said, 'I want to enjoy this weekend, I don't want to make this the center of my life this weekend.'
We had a good time with family and friends, it is so important for your well being to find some joy in the panic. (easier said than done!)
Ultimately I had to keep reminding myself that God was in control and that I was going to be thankful in All things.
I don't know if any of this helps you, I am a 'newbie' to all of this~I can only tell you what helped me.
Lot's of love & prayers to you and your family.
XOX-Michelle0 -
Tumor size...
Hi Carlene. I know you won't see this for at least a couple of days as you're currently in the hospital. You are in my thoughts and in my prayers often, sweetie!! I thought I'd add my experience just for comparison's sake in case anybody was following this conversation.
My tumor was just under 14 cm and 2 pounds. It was staged 1a, still contained in one ovary with nothing found anywhere else. I didn't have epithelial cancer though, which is the most common type. I had a Sertoli-Leydig tumor. I don't know if that makes a difference...if one type spreads more or less easily than the other?
Love,
Judy0
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