Partial Nephrectomy / Small RCC - Clear Cell
A week ago I had a partial nephrectomy and will be meeting with my Urologist tomorrow. Pathology confirmed the following to me:
Clear Cell RCC (1.7cm)
Rated a 2 for aggressiveness. Pathology confirmed negative margins. I have a perceived hermangioma in my liver and spleen. The spleen is somewhat abnormal according to the radiologist. I have been having pains in my shoulder and foot over the past few months. My current concern is that is spread further. I know this is not vey likely due to the size. I am a 44 year old male.
At this point, he mentioned following up in 6 months with scans to see if things change (spleen etc). Should I ask for another test to confirm that it has not spread further? Or should I just wait and assume that the odds are in my favor?
Overall I feel very fortunate... but do not want to be foolish. Any advice here would be great as I meet with him tomorrow.
Did any of you have a second pathologist review results?
Other scans to detect spreading to bones? (in my case I have had strange pains recently)
Thanks in advance. I wish everyone here good health...
Joe
Comments
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Take a deep breath and relax
Joe,
You have a prognosis which is as good as it gets. RCC rarely spreads under 4cm. I assume in your surgical workup they did a chest xray or CT of your chest which would identify any mets to your lung which is the first area of concern. Tell your doctor about the strange pains. Probably nothing as they go with the territory, but raise the question anyway.
Where did the "Moose" come from. When not writing on this post about RCC I write on Tripadvisor as "Thorntree" and am a Destination Expert for Algonquin Park, Ontario where Moose are very common in the wild as well as on the highway.
Icemantoo
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Mooseicemantoo said:Take a deep breath and relax
Joe,
You have a prognosis which is as good as it gets. RCC rarely spreads under 4cm. I assume in your surgical workup they did a chest xray or CT of your chest which would identify any mets to your lung which is the first area of concern. Tell your doctor about the strange pains. Probably nothing as they go with the territory, but raise the question anyway.
Where did the "Moose" come from. When not writing on this post about RCC I write on Tripadvisor as "Thorntree" and am a Destination Expert for Algonquin Park, Ontario where Moose are very common in the wild as well as on the highway.
Icemantoo
Thanks IceMan. Moose is a short nickname for my last name... I had a CT in April and MRI that were clean. So I was just concerned about spleen and bone. Just strange that I've had these coincide with this period.
I understand that I am fortunate with a good prognosis. But I have read some strange cases of METS going straight to bone with small RCC. Very rare. Thanks for the response- I wish you the best.
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Strange casesJoeMoose said:Moose
Thanks IceMan. Moose is a short nickname for my last name... I had a CT in April and MRI that were clean. So I was just concerned about spleen and bone. Just strange that I've had these coincide with this period.
I understand that I am fortunate with a good prognosis. But I have read some strange cases of METS going straight to bone with small RCC. Very rare. Thanks for the response- I wish you the best.
Joe,
So far I have not read about any mets going straight to the bones from such a small little buggar. Since you are seeing the doctor ask him as those type of questions are abve my pay grade.
Icemantoo
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My tumor wasn't much larger
My tumor wasn't much larger than yours, 2.5 cm, and I too was worried about every ache and soreness I experienced. I wasted alot of time searching for articles to educate myself because surely the doctors must have missed something I figured. I'm now at the point where I'm tired of worrying about what might be. I don't search anymore for rcc literature. I've come to accept that its done, its very likely gone for good and there is no real reason for me to worry about it again. In the very unlikely event it pops up again, it'll be a very simple deal to take care of, and life will go on with nothing more than a mere bump in the road. So I figure, as long as I get my yearly scan I can rest knowing that the scariest part is over.
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Thanks GuysDSFrey said:My tumor wasn't much larger
My tumor wasn't much larger than yours, 2.5 cm, and I too was worried about every ache and soreness I experienced. I wasted alot of time searching for articles to educate myself because surely the doctors must have missed something I figured. I'm now at the point where I'm tired of worrying about what might be. I don't search anymore for rcc literature. I've come to accept that its done, its very likely gone for good and there is no real reason for me to worry about it again. In the very unlikely event it pops up again, it'll be a very simple deal to take care of, and life will go on with nothing more than a mere bump in the road. So I figure, as long as I get my yearly scan I can rest knowing that the scariest part is over.
Thanks for the feedback. I am definitely done searching articles etc on RCC. I'm going to just conclude the same thing. Take care!
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grade 2 1.7 mmJoeMoose said:Thanks Guys
Thanks for the feedback. I am definitely done searching articles etc on RCC. I'm going to just conclude the same thing. Take care!
I think you are fine. But, you are 44. Guess what? That is where stuff starts hurting. Of course, we are parenoid about every discomfort.
Me, I am worried about this 1) buring in my lungs..., 2) swolen lymph nodes in my groin (which cause pain when they press against surrounding tissue), 3) this pain in my ribs....4) my blood suger is completely out of control. Before my cancer, or solitary met, the only symptoms I had were 1) weight loss, 2) Blood sugar issues, and with the Met, discomfort at the spot in the lung.
Last year, I was sure the cancer was back because of sporadic severe chest pains....turns out that at 50, there are other things that cause that.
It would really suck
to drop dead from a heart attack
After I was NED
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Hi Joe
Welcome. I'm sorry to hear that you had RCC. My personal opinion is that you are in great shape....your tumor was really small, found early, only grade 2 out of 4, and you are already post-op! You are only one week post surgery and that is still a rough time physically and emotionally. Everything will calm down in time as you learn to live with what transpired and as you heal. You probably already know that it is extremely rare for a very small tumor such as yours to metastasize. It's possible, but so so rare. I believe that if I were in your shoes I would just celebrate that all this is behind me. However, I would pay attention to my body and seek medical advice whenever I felt the need and absolutely do follow-up tests and screenings.
To answer your questions:
Should you ask for another test to confirm it has not spread? I think that is something that you definitely should discuss with your physician, and make sure you tell him/her that you have these aches and pains and worries. I think that is a question that you can only answer for yourself. If you already had CT scans of chest/abdomen and pelvis, and you've read the report yourself, do the results give you some assurance that nothing was seen at this point in time elsewhere? And then I would consider my own family history. Perhaps a choice would be to do repeat scans at 3 months versus 6 months, just to ease your mind and give your body a chance to heal from surgery.
Pathology review of slides: We did not have another pathologist review my husbands slides. It was pretty straightforward Clear cell RCC, grade 3.
Other scans to detect spreading to bones: Yes, my husband did have a CT/PET scan as a diagnostic tool to look for bone mets at the very beginning, prior to surgery. He had severe pain in his back, shoulder and hip, and blood in urine. It was part of his work-up prior to treatment. This was 2 1/2 years ago and I know we are rare to have had a CT/PET scan done preoperatively. I posted the question here once on this site, and it was considered unusual. As a side note, over the past 2 1/2 years I have read alot online and haven't come across anyone who had mets in their foot. It's probably another highly rare possibility.
Joe. I think things look really great for you, with a very positive outcome and a very long life ahead of you. You are so blessed to have found this early, but I understand the stress and anxiety that you are going through right now. All of that worry will calm down in time. I wish you continued healing and peace of mind.
Annie
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Pathology
You mention the size of the tumor, but you didn't mention the Stage of the tumor. Did the pathologist say this was Stage 1? (Small tumors are usually Stage 1, but not necessarily).
In any case you're likely fine and a 6 month follow up is probably what is called for. Did they do a CT of your chest? Or just an X ray? Will followup be a CT of chest, abdomen and pelvis? My urologist wanted to follow me with an xray of my chest, and ct of abdomen and pelvis. My oncologist wanted a ct of all three, and I feel better about that because lungs is one of the common sites of spreading. (by the way, liver and pancreas aren't on the top of the list for first sites. It's lungs & bones then after that abdominal cavity/site of tumor removal, other organs, brain, the others aren't in order, the first two are. I'm not saying it's not possible, just not likely.)
If you want another opinion, I'd try and find a medical oncologist with RCC experience. They are the most experienced in terms of advised follow up tests, probabilities of where/when it would spread, what mets look like in other parts of the body, etc. I doubt your surgeon is doing to do any more than what he/she is planning to do. However, I had a couple small spots I was worried about, and when I saw a medical oncologist he ordered a couple more tests just to make sure that the spots I had weren't mets. On the other hand, my tumor was Stage 3 Grade 3 and was 7 cm, so I had a higher probability of it spreading.
You may worry either way, unfortunately. I'm a worrier. I wasn't a hypochondriac before this, but I've kinda turned into one after this. It's unnerving to be completely healthy one day and peeing blood and have a serious cancer the next. So worrying about things going on with your body is bound to happen. Still, you should talk to your doctors about your concerns and if you think they aren't listening to your concerns, get another opinion.
Todd
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Other tests
did you have scans before the surgery? Bone scan, chest scan and Pet scan to the brain; these scans were done on my husband before the nephrectomy.
I had breast cancer 22 years ago and recall having several tests before surgery.
my husband's urologist gave him path results but it was his oncologist who interpreted and determined the course of treatment.
He had stage 4 and we knew that; the surprise was the grade 2 of the kidney tumor; the path of the mets was also grade 2.
this is a slow-growing cancer and in your case it is likely that it will not spread but it is an unpredictable one so caution and some follow-up is not unreasonable.
Sarah
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Other testsSrashedb said:Other tests
did you have scans before the surgery? Bone scan, chest scan and Pet scan to the brain; these scans were done on my husband before the nephrectomy.
I had breast cancer 22 years ago and recall having several tests before surgery.
my husband's urologist gave him path results but it was his oncologist who interpreted and determined the course of treatment.
He had stage 4 and we knew that; the surprise was the grade 2 of the kidney tumor; the path of the mets was also grade 2.
this is a slow-growing cancer and in your case it is likely that it will not spread but it is an unpredictable one so caution and some follow-up is not unreasonable.
Sarah
I had a CT about three months ago. The only things that showed up after the radiologists review was hermangiomas in liver and spleen. Sub centimeter cysts in my right kidney. The way it was worded I had a US on the abdomomen. Kidneys were clean. Swicthed to a friend and new Primary Care Physician was the one that said lets put this to bed with a MRI. Basically I found out yesterday with my meeting with the urologist that the tumor was in the CT originally - just very difficult to find. Because I was questioning how something could grow from sub centemeter to 1.7 cm in 2 months...
I am going to do an MRI in 6 months again and monitor my bone pains. It does not look likely that I will be doing a PET or Bone scan... at this stage I am counting myself very fortunate and do not want to lose sight of that. Thanks for the response Sarah...
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Pathologytodd121 said:Pathology
You mention the size of the tumor, but you didn't mention the Stage of the tumor. Did the pathologist say this was Stage 1? (Small tumors are usually Stage 1, but not necessarily).
In any case you're likely fine and a 6 month follow up is probably what is called for. Did they do a CT of your chest? Or just an X ray? Will followup be a CT of chest, abdomen and pelvis? My urologist wanted to follow me with an xray of my chest, and ct of abdomen and pelvis. My oncologist wanted a ct of all three, and I feel better about that because lungs is one of the common sites of spreading. (by the way, liver and pancreas aren't on the top of the list for first sites. It's lungs & bones then after that abdominal cavity/site of tumor removal, other organs, brain, the others aren't in order, the first two are. I'm not saying it's not possible, just not likely.)
If you want another opinion, I'd try and find a medical oncologist with RCC experience. They are the most experienced in terms of advised follow up tests, probabilities of where/when it would spread, what mets look like in other parts of the body, etc. I doubt your surgeon is doing to do any more than what he/she is planning to do. However, I had a couple small spots I was worried about, and when I saw a medical oncologist he ordered a couple more tests just to make sure that the spots I had weren't mets. On the other hand, my tumor was Stage 3 Grade 3 and was 7 cm, so I had a higher probability of it spreading.
You may worry either way, unfortunately. I'm a worrier. I wasn't a hypochondriac before this, but I've kinda turned into one after this. It's unnerving to be completely healthy one day and peeing blood and have a serious cancer the next. So worrying about things going on with your body is bound to happen. Still, you should talk to your doctors about your concerns and if you think they aren't listening to your concerns, get another opinion.
Todd
Todd, thanks for the response. I was never a hypochondriac at all. In fact, if i went to the doctor more than 4-5 times in the last 15 years i would be suprised. I have been worried until Monday of this week. I am finally just relaxing again and rejoicing. The tough part now is people mentioning that I have changed. Slowly it is taking less and less of my daily thoughts..... going forward. I think this forum will be my only source of information as it is quite positive...
I responded to Sarah on the tests. I had a CT of chest and it was clean 3 months ago. I guess the plan is to have another MRI in 6 months. If my shoulder and foot continue to hurt like hell, I will probably see an orthopedic. I feel pretty comfortable at this point that it has not spread. BTW mine was stage 1 as well.
I will keep the idea of the medical oncologist in mind with RCC experience though. In the end, what I explained to my Dr. yesterday was the radiologist interpretation of the original CT was that the kidneys were fine. The MRI caught this because I felt like there was something wrong. Even after I had a US, the morning afterwards, I told my wife I had cancer. This was prior to getting the results. So I worry more about the accuracy on some of these things due to how it all transpired... again, very luck.
Lets both quit worrying so much an enjoy life. (but worry enough to get tested and keep the surveillance up) H
Joe
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Thanks Anniea_oaklee said:Hi Joe
Welcome. I'm sorry to hear that you had RCC. My personal opinion is that you are in great shape....your tumor was really small, found early, only grade 2 out of 4, and you are already post-op! You are only one week post surgery and that is still a rough time physically and emotionally. Everything will calm down in time as you learn to live with what transpired and as you heal. You probably already know that it is extremely rare for a very small tumor such as yours to metastasize. It's possible, but so so rare. I believe that if I were in your shoes I would just celebrate that all this is behind me. However, I would pay attention to my body and seek medical advice whenever I felt the need and absolutely do follow-up tests and screenings.
To answer your questions:
Should you ask for another test to confirm it has not spread? I think that is something that you definitely should discuss with your physician, and make sure you tell him/her that you have these aches and pains and worries. I think that is a question that you can only answer for yourself. If you already had CT scans of chest/abdomen and pelvis, and you've read the report yourself, do the results give you some assurance that nothing was seen at this point in time elsewhere? And then I would consider my own family history. Perhaps a choice would be to do repeat scans at 3 months versus 6 months, just to ease your mind and give your body a chance to heal from surgery.
Pathology review of slides: We did not have another pathologist review my husbands slides. It was pretty straightforward Clear cell RCC, grade 3.
Other scans to detect spreading to bones: Yes, my husband did have a CT/PET scan as a diagnostic tool to look for bone mets at the very beginning, prior to surgery. He had severe pain in his back, shoulder and hip, and blood in urine. It was part of his work-up prior to treatment. This was 2 1/2 years ago and I know we are rare to have had a CT/PET scan done preoperatively. I posted the question here once on this site, and it was considered unusual. As a side note, over the past 2 1/2 years I have read alot online and haven't come across anyone who had mets in their foot. It's probably another highly rare possibility.
Joe. I think things look really great for you, with a very positive outcome and a very long life ahead of you. You are so blessed to have found this early, but I understand the stress and anxiety that you are going through right now. All of that worry will calm down in time. I wish you continued healing and peace of mind.
Annie
Thanks for the response above. I am definately feel good again and feel very fortunate. With all the great support here, with the responses I have received it has helped me put everything in perspective and finally calm down and worry a hell of alot less. I cannot thank you enough. I wish you and your husband well.
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a couple thoughtsJoeMoose said:Other tests
I had a CT about three months ago. The only things that showed up after the radiologists review was hermangiomas in liver and spleen. Sub centimeter cysts in my right kidney. The way it was worded I had a US on the abdomomen. Kidneys were clean. Swicthed to a friend and new Primary Care Physician was the one that said lets put this to bed with a MRI. Basically I found out yesterday with my meeting with the urologist that the tumor was in the CT originally - just very difficult to find. Because I was questioning how something could grow from sub centemeter to 1.7 cm in 2 months...
I am going to do an MRI in 6 months again and monitor my bone pains. It does not look likely that I will be doing a PET or Bone scan... at this stage I am counting myself very fortunate and do not want to lose sight of that. Thanks for the response Sarah...
It is really important that you see an oncologist. They are the specialist who sees people who have "had", or "have" cancer. I am under the impression that almost everyone here would agree with this. You might be told that you don't have cancer anymore, and therefore do not need to see an oncologist. Heck, you could even call some offices and they might not want to see you. But if I were you, with all I know at this point, I would want to have a consultation with a renal oncologist. This is my humble opinion.
Secondly, get copies of your reports for your own personal files. If you have a scan, ask for a copy of the disc at the time you have a scan. Get your operation report from the surgeon. Get a copy of the pathology report. Always get copies of everything. Read it yourself. You would be surprised at how often we aren't told about things on these reports, and I truly believe you have the right to know about everything.
I'm curious what your doc thought about your foot pain.
I hope you continue to feel better every day.
Annie
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a couple thoughtsa_oaklee said:a couple thoughts
It is really important that you see an oncologist. They are the specialist who sees people who have "had", or "have" cancer. I am under the impression that almost everyone here would agree with this. You might be told that you don't have cancer anymore, and therefore do not need to see an oncologist. Heck, you could even call some offices and they might not want to see you. But if I were you, with all I know at this point, I would want to have a consultation with a renal oncologist. This is my humble opinion.
Secondly, get copies of your reports for your own personal files. If you have a scan, ask for a copy of the disc at the time you have a scan. Get your operation report from the surgeon. Get a copy of the pathology report. Always get copies of everything. Read it yourself. You would be surprised at how often we aren't told about things on these reports, and I truly believe you have the right to know about everything.
I'm curious what your doc thought about your foot pain.
I hope you continue to feel better every day.
Annie
I have been keeping everything now in a folder. I need to get my pathology posted as it just came back last Friday. Most of my information is online now. They feel my foot pain is unrelated. I will bring up your recommendation to my PCP about seeing a renal oncologist. My urologist has referred me to a genetic specialist mid Sept... thank you for your advice.
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Foot painJoeMoose said:a couple thoughts
I have been keeping everything now in a folder. I need to get my pathology posted as it just came back last Friday. Most of my information is online now. They feel my foot pain is unrelated. I will bring up your recommendation to my PCP about seeing a renal oncologist. My urologist has referred me to a genetic specialist mid Sept... thank you for your advice.
I had some really bad foot pain about 4 years ago ( 8 years post Neph ). Turned out it was gout. Sort of related to Kidney function, but not necessarily RCC. Suggest your doctor check it out and do a Blood test for Uric Acid.
Icemantoo
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Ice Guy may be correct.. Iicemantoo said:Foot pain
I had some really bad foot pain about 4 years ago ( 8 years post Neph ). Turned out it was gout. Sort of related to Kidney function, but not necessarily RCC. Suggest your doctor check it out and do a Blood test for Uric Acid.
Icemantoo
Ice Guy may be correct.. I had similar pain.. i reduced the acid stuff like orange juice and it went away.. diet can be the answer on this one..
Ron
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medical oncologistsa_oaklee said:a couple thoughts
It is really important that you see an oncologist. They are the specialist who sees people who have "had", or "have" cancer. I am under the impression that almost everyone here would agree with this. You might be told that you don't have cancer anymore, and therefore do not need to see an oncologist. Heck, you could even call some offices and they might not want to see you. But if I were you, with all I know at this point, I would want to have a consultation with a renal oncologist. This is my humble opinion.
Secondly, get copies of your reports for your own personal files. If you have a scan, ask for a copy of the disc at the time you have a scan. Get your operation report from the surgeon. Get a copy of the pathology report. Always get copies of everything. Read it yourself. You would be surprised at how often we aren't told about things on these reports, and I truly believe you have the right to know about everything.
I'm curious what your doc thought about your foot pain.
I hope you continue to feel better every day.
Annie
Medical oncologists may not see you after a low grade small tumor is removed. Actually, you will find an oncologist to see you, but probably not an RCC specialist. The thing is they are busy treating the people with active disease or high risk for recurrance. You are NED, and are at a low risk of recurrance.
I see a medical oncologist. I am currently ned after stage iv because of a solitary metastisis. I also had a sarcomitoid tumor. I have an 80% chance of recurrance. You have a 5% or less chance. That is great for you.
There is really no value in going to a non-RCC medical oncologist: RCC is very diferent from most cancers. It responds to different drugs. More to the point, RCC has not shown to respond to adjuvant theropy. If an oncologist suggests something for a low grade, run. don't walk. (Caviate: clinical trials are different).
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Barrett'sicemantoo said:Foot pain
I had some really bad foot pain about 4 years ago ( 8 years post Neph ). Turned out it was gout. Sort of related to Kidney function, but not necessarily RCC. Suggest your doctor check it out and do a Blood test for Uric Acid.
Icemantoo
We have another condition in common.... Barrett's. I take 40mgs of Prilosec a day for that. Have a good one.
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Oncologistdhs1963 said:medical oncologists
Medical oncologists may not see you after a low grade small tumor is removed. Actually, you will find an oncologist to see you, but probably not an RCC specialist. The thing is they are busy treating the people with active disease or high risk for recurrance. You are NED, and are at a low risk of recurrance.
I see a medical oncologist. I am currently ned after stage iv because of a solitary metastisis. I also had a sarcomitoid tumor. I have an 80% chance of recurrance. You have a 5% or less chance. That is great for you.
There is really no value in going to a non-RCC medical oncologist: RCC is very diferent from most cancers. It responds to different drugs. More to the point, RCC has not shown to respond to adjuvant theropy. If an oncologist suggests something for a low grade, run. don't walk. (Caviate: clinical trials are different).
Thanks for the response here. And do understand how busy these folks are with more complex cases.
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