Am I becoming a hypochondriac???
Comments
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You're not...
being a whiner. How many of us have gone through the same sort of thing before our initial diagnosis? It definitely sounds as if you have something going on. I wish I had some ideas for you. Hopefully someone here will have a suggestion. Never give up on your emotions. Regardless of what others may say to write them off, your emotions are important, and you know better than anyone if something is going on with you physically. Don't give up until you feel better.0 -
You're not a whiner
You're not a whiner and I hope it is nothing. With this disease we have to listen to our bodies. I would hope you can get another CT scan soon, especially if your ca-125 is creeping upwards.0 -
i would ask for a pet scan.
i would ask for a pet scan. i had 2 ct scans and they both were clean and my ca 125 was high as well. i was having major pains in my lower abdomen and in the upper right hand of my belly. i had a pet scan and i lit up like a christmas tree. i had to have another exploritory surgery and they found more cancer cells on my parataneal wall and on my liver and colon. they also had to remove a foot of my small intestine cause all the scar tissue from my IP chemo made me have an obstruction. just remember the drs work for you. you pay them. dont let them post pone stuff. this is your life and you pay them to save your life. so get your monies worth. i am a stage 3 ovarian cancer survivor/still fighting. i was diagnosed last year in july. ive had 6 surgeries and now about to have my 7th one. im now having a double mastectomy because of some stuff they found in my breast. i pray for you. i hope you get it figured out. if you ever wanna talk you can email me. mazeheather@yahoo.com. i am 28 and this fight is tough.0 -
Thanks for all the feedback.
Thanks for all the feedback. It's kind of reassuring to know I'm not being a hypochondriac. I think the people around me forget that I'm still fighting this stuff because my hair is back and I look kind of back to my normal self.
My next scheduled appointment with the oncologist is later October. Unless something significant happens between now and then I will just plan on that and if things still aren't right I'm going to push further. Especially interested in looking into the PET scan.0 -
If you had CT scan in
If you had CT scan in June,it's almost 3 months now,and I don't understand this "they don't want to do it so soon after the last one" attitude.
My regular follow up involves CA125 AND a CT SCAN every three months. I think this whole thing of "worried about too frequent CT scans and exposure to radiation" is quite out of balance. The cancer is an IMMEDIATE danger. The cumulative effect of radiation from a scan is a LONG term issue that may or may not happen. In fact, my goal/hope is to live long enough to suffer the consequences of all the scans I had and will have.
I would be very alarmed with the kind of pain you are describing - and I am the OPPOSITE of an hypochondriac-if anything, my problem is not to take health related issues seriously enough,early enough. Even so, with the kind of conditions you have (rising CA125 and pain), I will be putting it on a bulletin board for all of my medical team members to see/hear.
How often have we heard women waiting too long to be diagnosed and missing the window for early stage? Why should we repeat the same mistake for recurrence? Some ovarian cancer can spread VERY VERY fast. A good friend of mine, who is an OB/GYN told me about a patient of hers on whom she performed laparoscopic exploration, a CT scan, and an ultrasound for a non cancer related reason -- all clean results. Two months later, the same patient came back, and they found widely metastatic ovarian cancer. Since you (your last scan), a lot could have happened. Especially with your rising CA125, nothing should be taken lightly.
I really hope you pain is something else, but if I were you, I would be insisting on ALL kinds of tests and exploration. Pain is an evolutionary tool: it's there as an early warning so that we can do something and increase our survival odds. This kind of pain is NOT normal, and shouldn't be pooh poohed.
I hope I am not scaring you needlessly, but I really hope you will do something about it, rather than to endure it stoically. Nobody will give you an award for that.
Again, I REALLY hope that this is nothing. But, do yourself a favor. Have it thoroughly explored.0 -
Maybe you can get an ultrasound?evertheoptimist said:If you had CT scan in
If you had CT scan in June,it's almost 3 months now,and I don't understand this "they don't want to do it so soon after the last one" attitude.
My regular follow up involves CA125 AND a CT SCAN every three months. I think this whole thing of "worried about too frequent CT scans and exposure to radiation" is quite out of balance. The cancer is an IMMEDIATE danger. The cumulative effect of radiation from a scan is a LONG term issue that may or may not happen. In fact, my goal/hope is to live long enough to suffer the consequences of all the scans I had and will have.
I would be very alarmed with the kind of pain you are describing - and I am the OPPOSITE of an hypochondriac-if anything, my problem is not to take health related issues seriously enough,early enough. Even so, with the kind of conditions you have (rising CA125 and pain), I will be putting it on a bulletin board for all of my medical team members to see/hear.
How often have we heard women waiting too long to be diagnosed and missing the window for early stage? Why should we repeat the same mistake for recurrence? Some ovarian cancer can spread VERY VERY fast. A good friend of mine, who is an OB/GYN told me about a patient of hers on whom she performed laparoscopic exploration, a CT scan, and an ultrasound for a non cancer related reason -- all clean results. Two months later, the same patient came back, and they found widely metastatic ovarian cancer. Since you (your last scan), a lot could have happened. Especially with your rising CA125, nothing should be taken lightly.
I really hope you pain is something else, but if I were you, I would be insisting on ALL kinds of tests and exploration. Pain is an evolutionary tool: it's there as an early warning so that we can do something and increase our survival odds. This kind of pain is NOT normal, and shouldn't be pooh poohed.
I hope I am not scaring you needlessly, but I really hope you will do something about it, rather than to endure it stoically. Nobody will give you an award for that.
Again, I REALLY hope that this is nothing. But, do yourself a favor. Have it thoroughly explored.
Your symptoms could be from ascites (secondary to the malignancy issue)--would your insurance or doctor give the OK to do an ultrasound? That might pave the way for the next test which would be the PET/CT scan.
I totally agree with evertheoptimist: don't sit on this. Your next symptoms might take you to the emergency department with a bowel obstruction. Peritoneal disease is so tiny and widespread--when it gets on the outside of the intestines, it causes all kinds of problems.
If your CA-125 wasn't so high, I would say you were dealing with scar tissue (aka "adhesions") which would also explain your symptoms. You could be having adhesions, ascites AND peritoneal cancerous implants.
Stop being such a "good patient" and be your own best advocate--call your doctor's office and at least speak with the nurse.
Carolen0 -
Become a squeaky wheel.carolenk said:Maybe you can get an ultrasound?
Your symptoms could be from ascites (secondary to the malignancy issue)--would your insurance or doctor give the OK to do an ultrasound? That might pave the way for the next test which would be the PET/CT scan.
I totally agree with evertheoptimist: don't sit on this. Your next symptoms might take you to the emergency department with a bowel obstruction. Peritoneal disease is so tiny and widespread--when it gets on the outside of the intestines, it causes all kinds of problems.
If your CA-125 wasn't so high, I would say you were dealing with scar tissue (aka "adhesions") which would also explain your symptoms. You could be having adhesions, ascites AND peritoneal cancerous implants.
Stop being such a "good patient" and be your own best advocate--call your doctor's office and at least speak with the nurse.
Carolen
We must be our own TRUE advocates, trusting our own knowing of our own bodies. You know something is wrong. You have no doubt. The squeaky wheel DOES get the grease, so become a pain in the you know what until you get the tests Carolen mentioned. Your life is too valuable to take a chance on waiting.0 -
Thanks again for all the
Thanks again for all the feedback. I greatly appreciate it and no, no one is scaring me. :-)
I did call my oncologist yesterday and asked that they move my appointment up and it is now rescheduled for October 4 instead of the 28th. If I need to I will make an appointment with my primary care physician (who's actually a nurse practitioner but very knowledgeable of cancer as she had done her residency in an oncology ward...plus personal experience of her sister having cancer)
I'm also doing some serious inquiries into getting on disability as I feel that this job is not helping me at all as far as my health is concerned.0 -
Okay....I have an update. I
Okay....I have an update. I had an appointment with my primary care this Tuesday to discuss further what we should do and as a result she scheduled a PET scan for me and it was to be next week. At first I was glad to finally have something set in motion but since Tuesday it has just bugged me that I think it's something else but not sure what. So this morning I called my primary care to see if we could try and rule some other things out and expected for the receptionist to take my name and number to have her call me back but she said she was right there so put her on the phone. And when she got on she said it was really funny I called because she actually had my file in her hand because she said it's been kind of bugging her the last couple days as well so she pulled my file this morning and relooked at the CT scan results from June and discovered something that they overlooked because they were so tunnel visioned on trying to find cancer. Well, I have a gallstone! So, we will be getting that scheduled to be removed.
I think it was a first for my doctor today. I bet she's never had anyone be so happy to hear they have a gallstone! :-)0 -
It's funny that having a gallstonewfisaac said:Okay....I have an update. I
Okay....I have an update. I had an appointment with my primary care this Tuesday to discuss further what we should do and as a result she scheduled a PET scan for me and it was to be next week. At first I was glad to finally have something set in motion but since Tuesday it has just bugged me that I think it's something else but not sure what. So this morning I called my primary care to see if we could try and rule some other things out and expected for the receptionist to take my name and number to have her call me back but she said she was right there so put her on the phone. And when she got on she said it was really funny I called because she actually had my file in her hand because she said it's been kind of bugging her the last couple days as well so she pulled my file this morning and relooked at the CT scan results from June and discovered something that they overlooked because they were so tunnel visioned on trying to find cancer. Well, I have a gallstone! So, we will be getting that scheduled to be removed.
I think it was a first for my doctor today. I bet she's never had anyone be so happy to hear they have a gallstone! :-)
is good news but under the circumstances it sure is. In 1990 I experienced the most pain I had ever had and did not go to the doctor until I had what I found out later were 19 gallbladder attacks. Once I had my gallbladder out, the pain was gone. It's weird that a few gallstones could cause so much pain and yet Stage IIIc ov/ca did not cause me any pain at all.
I'm happy for you and good luck with the procedure.
Karen0 -
What about having the PET scan done?wfisaac said:Okay....I have an update. I
Okay....I have an update. I had an appointment with my primary care this Tuesday to discuss further what we should do and as a result she scheduled a PET scan for me and it was to be next week. At first I was glad to finally have something set in motion but since Tuesday it has just bugged me that I think it's something else but not sure what. So this morning I called my primary care to see if we could try and rule some other things out and expected for the receptionist to take my name and number to have her call me back but she said she was right there so put her on the phone. And when she got on she said it was really funny I called because she actually had my file in her hand because she said it's been kind of bugging her the last couple days as well so she pulled my file this morning and relooked at the CT scan results from June and discovered something that they overlooked because they were so tunnel visioned on trying to find cancer. Well, I have a gallstone! So, we will be getting that scheduled to be removed.
I think it was a first for my doctor today. I bet she's never had anyone be so happy to hear they have a gallstone! :-)
Does the doctor think the gall stone is responsible for your high CA-125, too? That would be WONDERFUL! Gall bladder pain usually radiates to the right shoulder blade, right upper quadrant of the abdomen or mid-sternal area. It is unusual to feel a gall bladder attack in the pelvis but everyone is different. Gall bladder attacks usually happen AFTER a meal--usually after eating oil or fat. Gall stones tend to run in families (just FYI).
So are you gonna put off having the PET scan?
Best wishes for a smooth surgery and recovery.
Carolen0 -
That is such sweet newswfisaac said:Okay....I have an update. I
Okay....I have an update. I had an appointment with my primary care this Tuesday to discuss further what we should do and as a result she scheduled a PET scan for me and it was to be next week. At first I was glad to finally have something set in motion but since Tuesday it has just bugged me that I think it's something else but not sure what. So this morning I called my primary care to see if we could try and rule some other things out and expected for the receptionist to take my name and number to have her call me back but she said she was right there so put her on the phone. And when she got on she said it was really funny I called because she actually had my file in her hand because she said it's been kind of bugging her the last couple days as well so she pulled my file this morning and relooked at the CT scan results from June and discovered something that they overlooked because they were so tunnel visioned on trying to find cancer. Well, I have a gallstone! So, we will be getting that scheduled to be removed.
I think it was a first for my doctor today. I bet she's never had anyone be so happy to hear they have a gallstone! :-)
I hope the stone is the source of your symptoms.0 -
We're going to wait on thewfisaac said:Okay....I have an update. I
Okay....I have an update. I had an appointment with my primary care this Tuesday to discuss further what we should do and as a result she scheduled a PET scan for me and it was to be next week. At first I was glad to finally have something set in motion but since Tuesday it has just bugged me that I think it's something else but not sure what. So this morning I called my primary care to see if we could try and rule some other things out and expected for the receptionist to take my name and number to have her call me back but she said she was right there so put her on the phone. And when she got on she said it was really funny I called because she actually had my file in her hand because she said it's been kind of bugging her the last couple days as well so she pulled my file this morning and relooked at the CT scan results from June and discovered something that they overlooked because they were so tunnel visioned on trying to find cancer. Well, I have a gallstone! So, we will be getting that scheduled to be removed.
I think it was a first for my doctor today. I bet she's never had anyone be so happy to hear they have a gallstone! :-)
We're going to wait on the PET scan. It sounds like the game plan is to go ahead and get the gallstone problem taken care of and then see. They said it could very well be possible that the problem could be what has elevated my CA125.
I have had the pain up in my right shoulder blade area as well. But, I actually do most of the time as a result of an injury I had many years ago. I've had on and off more significant pain there but I was just taking it as the natural process of age and and old injury.
Reading a lot of the symptoms of gallstones does fit a lot of what I have felt for some time now.
So, I am really hoping that this is it. Of course there's that little voice in the back of my mind wanting to cause me to be afraid that this isn't all that is wrong. But, I know I just need to keep moving forward and hope for the best and see what happens. I can't wait to get the surgery behind me so we can recheck everything else and see.0 -
When I was diagnosed, I hadwfisaac said:We're going to wait on the
We're going to wait on the PET scan. It sounds like the game plan is to go ahead and get the gallstone problem taken care of and then see. They said it could very well be possible that the problem could be what has elevated my CA125.
I have had the pain up in my right shoulder blade area as well. But, I actually do most of the time as a result of an injury I had many years ago. I've had on and off more significant pain there but I was just taking it as the natural process of age and and old injury.
Reading a lot of the symptoms of gallstones does fit a lot of what I have felt for some time now.
So, I am really hoping that this is it. Of course there's that little voice in the back of my mind wanting to cause me to be afraid that this isn't all that is wrong. But, I know I just need to keep moving forward and hope for the best and see what happens. I can't wait to get the surgery behind me so we can recheck everything else and see.
When I was diagnosed, I had actually been sent for an ultrasound to confirm gallstones. Evidently, OC and gallstones feel a LOT alike.
Carlene0
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