UPDATE ON Lower back pain, then kidney stone attack no stone found, now lesion on ovary - anyone exp

blueroses

I'm just taking a shot on this here cause the docs seem confused.

I was diagnosed with a kidney stone they THOUGHT they saw stuck in my bladder but after surgery yesterday to remove it THERE WAS NO STONE THERE. They are seeming 'something' on the CT's and one surgeon said they missed this 'lesion on my right ovary' last CT, gee thanks, and now they go in and NADA.

Obviously this 'thing' is not in or on the bladder but maybe behind it? The weirder thing is that about 6 years ago or so I got this horrible attack of back pain and they never really figured that out either, said it looked like a bulge from maybe a disc (or arthritis) but no one really said for sure - I have been on morphine ever since. Then up comes this 'kidney stone' attack 5 years later and now this 'ovary lesion'. I can't help but think this is all a part of the same thing.

I had an internal exam by a new oncologist and she could feel nothing obvious and I am pushing for a quick pelvic ultrasound and a quick read of those results. I fear of course a new cancer (I am a 20 years survivor of non hodgkins lymphoma) and the fear that this has gone missed and misdiagnosed for maybe a couple of years.

Of all the tests and CT's and xrays etc I have had this seems unreal that someone was missed with my medical history.

Has anyone with a final ovarian cancer diagnosis gone through this kind of thing before?
They say 'don't diagnose yourself' but what the heck else are you going to do when no one else seems to be on the right track?

Thanks for reading my posting. Blueroses.

Cindy54

Keep Pushing
For an answer. Blue, ovarian isn't known as the "silent" killer for nothing. It mimics a lot of other symptoms. I hope the ultrasound shows something..I mean this in a good way... so you have an answer. A lot of the ladies here have had symptoms that seemed like intestinal problems and it turned out to be ovarian. I am not saying yours is, and I hope that it is not. My Mom had symptoms of lower back pain for years. She had scans, etc. Only when the disease had progressed was it found. I had no symptoms at all and it was found. Check and triple check.I wish you the best, and please keep us posted. I am sure some of the other ladies here will chime in....Cindy

carol2dogs

Cindy54 said:

Keep Pushing
For an answer. Blue, ovarian isn't known as the "silent" killer for nothing. It mimics a lot of other symptoms. I hope the ultrasound shows something..I mean this in a good way... so you have an answer. A lot of the ladies here have had symptoms that seemed like intestinal problems and it turned out to be ovarian. I am not saying yours is, and I hope that it is not. My Mom had symptoms of lower back pain for years. She had scans, etc. Only when the disease had progressed was it found. I had no symptoms at all and it was found. Check and triple check.I wish you the best, and please keep us posted. I am sure some of the other ladies here will chime in....Cindy

Agreed
Blueroses,
I so agree with Cindy - keep on pushing and asking questions. There are so many different things that could go wrong in this area, and obviously something is going on. My hope for you is that you will get an accurate diagnosis, and that a good treatment will be available for you. By the way, I just love your picture - so beautiful! Love and hugs, Carol

blueroses

Cindy54 said:

Keep Pushing
For an answer. Blue, ovarian isn't known as the "silent" killer for nothing. It mimics a lot of other symptoms. I hope the ultrasound shows something..I mean this in a good way... so you have an answer. A lot of the ladies here have had symptoms that seemed like intestinal problems and it turned out to be ovarian. I am not saying yours is, and I hope that it is not. My Mom had symptoms of lower back pain for years. She had scans, etc. Only when the disease had progressed was it found. I had no symptoms at all and it was found. Check and triple check.I wish you the best, and please keep us posted. I am sure some of the other ladies here will chime in....Cindy

Hey Cindy
Thanks for the words of wisdom, you can bet I will fight for a diagnosis - we are all fighters and I have been doing so for 20 years as I am sure many have on here - fought the long fight.

I am hoping, because of my total body radiation that this all turns out to be scar tissue or something but who knows. The surgeon (urologist) after he had investigated and found nothing, said something strange though. Now I don't remember exactly how he put it but he said that all he could see was the usual expected radiation tissues. Now again, those werent his exact words cause I was still in shock from 'there was no stone found' but he was definitely saying that inside the uterus had been altered by the radiation and perhaps he even hinted at chemo but definitely radiation had produced changes and they were used to seeing it. That's a new one on me. I had localized radiation to the groin and pelvis area in 1989 for the non hodgkins lymphoma then total body radiation and reduced radiation in that area in 1991 when I opted for a bone marrow transplant. Whatever this turns out to be looks like here is yet another late effect from treatment so many years ago. Sigh.

Could be a fibroid, could be this and could be that but one thing I don't like is that it now hurts and it didn't before. You know how you just have a feeling that something isn't right, well I feel that but not super strongly so I am hoping that is a positive indication that yes this has to be dealt with but maybe it won't be a secondary cancer.

Thanks for your kind words of support. Blessings, Blueroses.

blueroses

carol2dogs said:

Agreed
Blueroses,
I so agree with Cindy - keep on pushing and asking questions. There are so many different things that could go wrong in this area, and obviously something is going on. My hope for you is that you will get an accurate diagnosis, and that a good treatment will be available for you. By the way, I just love your picture - so beautiful! Love and hugs, Carol

Hi Carol
Thank you for your words of support and encouragement. Don't worry they haven't heard the last from me, they are going to diagnose and cure me just to GET RID OF ME. lol.

Thanks for the compliment about the pic of a bluerose. I got to love the idea of blueroses from a Tennessee Williams play called The Glass Menagerie. Blueroses can not grom naturally in nature because of the color but recently one was supposed to have been grown by someone in the Orient somewhere. I saw a picture of it, it was called the I believe but I think it looks more mauve than true blue. I have bought blueroses for myself sometimes and they dye them by having white roses suck up blue tinted water. They can be quite pretty if done right.

Here is a link to all things Blueroses, apparently a poem by Rudyard Kipling was written about the Bluerose, never knew that. Here is the link and you can see the new rose grown in Japan http://www.squidoo.com/BlueRoses

Take care, Blueroses

kayandok

blueroses said:

Hey Cindy
Thanks for the words of wisdom, you can bet I will fight for a diagnosis - we are all fighters and I have been doing so for 20 years as I am sure many have on here - fought the long fight.

I am hoping, because of my total body radiation that this all turns out to be scar tissue or something but who knows. The surgeon (urologist) after he had investigated and found nothing, said something strange though. Now I don't remember exactly how he put it but he said that all he could see was the usual expected radiation tissues. Now again, those werent his exact words cause I was still in shock from 'there was no stone found' but he was definitely saying that inside the uterus had been altered by the radiation and perhaps he even hinted at chemo but definitely radiation had produced changes and they were used to seeing it. That's a new one on me. I had localized radiation to the groin and pelvis area in 1989 for the non hodgkins lymphoma then total body radiation and reduced radiation in that area in 1991 when I opted for a bone marrow transplant. Whatever this turns out to be looks like here is yet another late effect from treatment so many years ago. Sigh.

Could be a fibroid, could be this and could be that but one thing I don't like is that it now hurts and it didn't before. You know how you just have a feeling that something isn't right, well I feel that but not super strongly so I am hoping that is a positive indication that yes this has to be dealt with but maybe it won't be a secondary cancer.

Thanks for your kind words of support. Blessings, Blueroses.

CA125?
Hi Blue, you don't mention a CA125 being taken. If there is a any ovca it would be above normal range.
Sounds like you are a fighter and will get to the bottom of this. Go girl!
kathleen:)

blueroses

kayandok said:

CA125?
Hi Blue, you don't mention a CA125 being taken. If there is a any ovca it would be above normal range.
Sounds like you are a fighter and will get to the bottom of this. Go girl!
kathleen:)

Hi Kathleen
Yes my gyno, soon to be ex gyno for not mentioning she is going on holidays for over a month and not passing me on to someone who could look after me right away - grrrrr, mentioned 125. However she talked about how you can't always be sure of the results and sometimes false positives come up so I don't want to worry about it coming up yes then no after but if I have to wait much longer I will get that for some reference.

After being a survivor for 20 years you learn to fight or you don't last and we are all fighters somewhere along the line, we have to be. Being our own advocate is so important and I can't tell you how many times I feel I saved my own life by speaking up. I'm not that popular amongst docs but who cares - many of them hate patients who ask more than one question and God forbid question their theories yet. Too bad. Don't get me wrong I do it in a polite way but you have to cover your own butt sometimes, that's for sure.

The big worry for me is that it was missed on a previous CT scan and that was several months ago and the lesion was there then. I have read up a bit on ovarian and man you have to get that one early, as you undoubtedly know big time and to think it was out of my grasp through misdiagnosis just tears me up. I have had so many CT's of my lower back and that would have caught the ovaries for sure and no one caught it.

Well I am trying not to get too worked up about this, ya right, as I don't know the results yet but this aching pain in the bottom of my back is totally new - has been there about 2 months - kind of like a pre period pain would be. So it's a constant reminder that something is wrong.

I am hoping it's a benign fibroid pressing on something, hoping and praying.

Thanks for your response. Hope today is a good day for you and yours. Blessings always, Blueroses.

blueroses

Cindy54 said:

Keep Pushing
For an answer. Blue, ovarian isn't known as the "silent" killer for nothing. It mimics a lot of other symptoms. I hope the ultrasound shows something..I mean this in a good way... so you have an answer. A lot of the ladies here have had symptoms that seemed like intestinal problems and it turned out to be ovarian. I am not saying yours is, and I hope that it is not. My Mom had symptoms of lower back pain for years. She had scans, etc. Only when the disease had progressed was it found. I had no symptoms at all and it was found. Check and triple check.I wish you the best, and please keep us posted. I am sure some of the other ladies here will chime in....Cindy

Hey Cindy and Carol - UPDATE
I had the pelvic ultrasound (oh fun, NOT) and it came back inconclusive because it was such a small nodule. Turns out it wasn't a lesion ON the ovary but a nodule inside my right ovary. My GP just called with her thoughts and the gyno radiologist who sent in her findings on my case. It was recommened that to be totally sure what the nodule is a removal of my right ovary might be the best plan. If I am a 'wait and see' kind WHICH I AN NOT then she suggested waiting 2 or 3 months and then redoing the ultrasound. So my gyno will be back from holidays on July 10th which isn't far away and it will be at that point that I will be given her take on it all and I will make my decision but I know what it is - yank that sucker out and lets find out for sure.

I was also reading on this board that a person had this kind of thing and they later found that there were cells in the omentum as well so that paid to read that so I can ask my gyno to biopsy the omentum too and see what's what.

Can you guys give me some guidance on what else I might ask, not sure of appropriate questions as I had non hodgkins lymphoma years ago, 20 to be exact, and so reproductive cancers are foreign to me.

Thanks for your input thus far. Blessings, Blueroses.

saundra

blueroses said:

Hey Cindy and Carol - UPDATE
I had the pelvic ultrasound (oh fun, NOT) and it came back inconclusive because it was such a small nodule. Turns out it wasn't a lesion ON the ovary but a nodule inside my right ovary. My GP just called with her thoughts and the gyno radiologist who sent in her findings on my case. It was recommened that to be totally sure what the nodule is a removal of my right ovary might be the best plan. If I am a 'wait and see' kind WHICH I AN NOT then she suggested waiting 2 or 3 months and then redoing the ultrasound. So my gyno will be back from holidays on July 10th which isn't far away and it will be at that point that I will be given her take on it all and I will make my decision but I know what it is - yank that sucker out and lets find out for sure.

I was also reading on this board that a person had this kind of thing and they later found that there were cells in the omentum as well so that paid to read that so I can ask my gyno to biopsy the omentum too and see what's what.

Can you guys give me some guidance on what else I might ask, not sure of appropriate questions as I had non hodgkins lymphoma years ago, 20 to be exact, and so reproductive cancers are foreign to me.

Thanks for your input thus far. Blessings, Blueroses.

CT Scan
I would think a CT scan would be the next step if you have an elevated CA-125. The omentum is a fatty lining of the abdomen and if cancer spreads to it there are lots of tumors usually. Ovarian spreads rapidly to all over the abdomen. Mine was in both ovaries, all over omentum, spleen, liver and colon by the time I was diagnosed. There are also numerous lymph glands in the abdomen. A biopsy of the ovary node is the only sure test. Saundra

Cindy54

You Post
Blue, I agree, that pelvic ultrasound is an experience to forget! I had a new person doing mine and you would have thought she was trying to find gold in there.At least she was thorough.I am with Saundra....a CT scan would be the next thing to do.

If you do decide to do surgery, areyou going to have the "cut" surgery or laprascopy? And do you feel you need a second opinion? Have they done a CA125 blood test yet? Given your history of cancer, and if the ca125 test numbers were a little suspicious, they might opt for the cutting surgery. If they did this, they could not only take the ovary, but they could take some lymph nodes, any or all of the omentum, and any other areas that are not looking right. They could do more biopsies. They would also take you appendix as that is one of the first places ovarian goes. Now all of this is if they suspect a hint of ovarian.

I hope all goes well for you. Ask lots of questions. And if you don't want to take the wait and see approach..I know I wouldn't, because the waiting to know whould be too hard.....ask about the type of surgery and what all they plan to do. Please let us know.Hugs, Cindy

blueroses

saundra said:

CT Scan
I would think a CT scan would be the next step if you have an elevated CA-125. The omentum is a fatty lining of the abdomen and if cancer spreads to it there are lots of tumors usually. Ovarian spreads rapidly to all over the abdomen. Mine was in both ovaries, all over omentum, spleen, liver and colon by the time I was diagnosed. There are also numerous lymph glands in the abdomen. A biopsy of the ovary node is the only sure test. Saundra

Hey Saundra
Yup I agree from what I was told that a biopsy of the ovary node is the only sure test. I didn't have the CA125 as my Gyno said that it can be misleading so right now I don't need misleading I need for sure. Can you get a laproscopic ovary node biopsy though? Blessings, Blueroses

saundra

blueroses said:

Hey Saundra
Yup I agree from what I was told that a biopsy of the ovary node is the only sure test. I didn't have the CA125 as my Gyno said that it can be misleading so right now I don't need misleading I need for sure. Can you get a laproscopic ovary node biopsy though? Blessings, Blueroses

Needle biopsy
If the tumor is of a certain size they can do a needle biopsy. I had one and my tumor was 2.5 to 3.0 cm.
It is done with a CT Scan on the CT table to get the absolute placement right. Saundra

blueroses

Cindy54 said:

You Post
Blue, I agree, that pelvic ultrasound is an experience to forget! I had a new person doing mine and you would have thought she was trying to find gold in there.At least she was thorough.I am with Saundra....a CT scan would be the next thing to do.

If you do decide to do surgery, areyou going to have the "cut" surgery or laprascopy? And do you feel you need a second opinion? Have they done a CA125 blood test yet? Given your history of cancer, and if the ca125 test numbers were a little suspicious, they might opt for the cutting surgery. If they did this, they could not only take the ovary, but they could take some lymph nodes, any or all of the omentum, and any other areas that are not looking right. They could do more biopsies. They would also take you appendix as that is one of the first places ovarian goes. Now all of this is if they suspect a hint of ovarian.

I hope all goes well for you. Ask lots of questions. And if you don't want to take the wait and see approach..I know I wouldn't, because the waiting to know whould be too hard.....ask about the type of surgery and what all they plan to do. Please let us know.Hugs, Cindy

I did have a CT
A CT scan was what found the node first then I had the pelvic ultrasound. Funny you should talk about a new person doing your pelvic ultrasound. When I went into the room to have it started the girl, who looked about 15, said her name and that she was a 'student'. YIKES. She said 'is that alright that I do the ultrasound?' I didn't want to hurt her feelings but worse was hurting me big time so I told her that I don't want her to take it the wrong way but I am EXTREMELY sensitive to any invasive testing like this, because of all my treatments over 20 years, and I would probably do better with a supervisor or someone who is more experienced. She said that that was fine and went to get her supervisor who proceeded to do my ultrasound. I was afraid the student because she was inexperienced 'root around in there' and man I really can't handle that. I really am very sensitive due to all the treatments I have been through.

Interesting you should mention the appendix. I still have mine and a cousin of mine just asked me if they were looking into the appendix because I have this back pain that no one can figure out. My GP said it isn't coming from the node in the ovary. It's coming from somewhere, that's for sure. Did you have back pain with your situation? I realize everyone is different and I am only looking at a whole picture here, I learned long ago not to think that every symptom one person has you have as well.

I certainly will ask about the type of surgery but of course would prefer laproscopic first but not at the risk of it not being thorough enough. Other biopsies sound like the only way to go for sure. I think before I went through anything too invasive in surgery though I would get a second opinion first. The ca 125 was something I turned down because when the new Gyno mentioned it she talked about the fact that it wasnt conclusive and I don't want to have that factored in too, might be wrong. However before I get cut open, if that does happen, I am sure the gyno would want to run the ca 125 test as added info before a final decision for surgery is made.

Thanks for your help. Blessings, Blueroses.

blueroses

saundra said:

Needle biopsy
If the tumor is of a certain size they can do a needle biopsy. I had one and my tumor was 2.5 to 3.0 cm.
It is done with a CT Scan on the CT table to get the absolute placement right. Saundra

Okay thanks
Ya it made sense about a needle biopsy if the growth was a certain size. I think mine was 3. something but not really sure, they said it was small anywho. Thanks for your help. Blessings, Blueroses.

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