3 Months Post-Op Questions
Hello, I am very happy to have found this board. I have questions that I am afraid to contact my doctor about, and am hoping someone has experienced the same as I and can offer some advice. So, here goes.
I am 48. I was diagnosed Stage 1 RCC (4cm tumor) in May 2015. I had a lap robotic assist partial nephrectomy in July. Unfortunately a 3-month CT showed all cells were not removed and had grown to a 1cm tumor. I had the second partial nephrectomy in November, however this was done open incision. The surgeon also removed the adrenal gland. He is very happy with the results of this last procedure, and has scheduled my first follow-up CT in June 2016. Although the incisions have all healed fine, I have developed other issues that, quite honestly, scare the crap out of me.
I realize I am fortunate to have been diagnosed Stage 1 and it is my understanding there is practically no chance that it has spread. A couple weeks ago I developed minor annoying lower back pain. Other sites I have read state that this is normal with this type of procedure. But is it normal that it took 3 months to happen?
Also, I have become very emotional and panic when I feel any unusual twinge or pain. I immediately get scared that something serious is wrong, and can spend hours crying. I have cried a lot living in fear of this cancer spreading, and fear of ignoring a symptom that shouldn't be ignored. I don't want to become a hypochondriac, but I don't want to risk brushing off something that may be serious. Basically, I am an emotional wreck!
In addition to being extremely emotional, my periods have become irregular, and I am fatigued at the end of the day, to the point that I may become dizzy. Is this normal after losing one adrenal gland? My doctor told me the other gland will pick up the slack, but honestly, I have never felt this way before.
After the first surgery, I felt fine in approx 4 weeks. This time, I am exhausted, emotional, and afraid.
Please, if anyone else has experienced these post-op feelings/symptoms, please share.
Thank you,
Suzanne
Comments
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Welcome
Suzanne,
Welcome to our little group. Unfortunately many of the pains you experience are above the paygrade of myself and other members. Please ask these questions to your Doctor's first as we are here for emotional support not for a medical diagnosis. Others will no doubt chime in with their thoughts. As for you periods this Doctor (of Laws) is clueless.
Icemantoo
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Anxiety and Hypochondria
I'm with you. I also lost my right adrenal gland to a second tumor.
I have the anxiety you speak of and also the worry about anything that changes in my body thinking it's a new tumor.
I'd say when you have symptoms, let them go for a week or two (unless they are really serious) and see if they go away. If they do, it's not a recurrence. I'm trying this approach now. It has been helping me. I do have terrible anxiety at first. If it hangs on, I write it down and when I see my doctor (either the primary or the oncologist), I tell them about it. I have to write it down, because when I'm in the office I find myself not thinking about those things.
I don't know that it's impossible that we are more anxious or moody from losing an adrenal gland. I don't honestly think they really know for sure.
I know you have enough to worry about, but Stage 1 recurrence probably is not virtually "none". It's somewhere between 3-7%.
Can you please share your diagnosis with us on the second tumor? It's very rare to hear that someone got a tumor in the same location in the kidney. Was this considered a metastasis? Are you still Stage 1? I've never heard of anyone having another tumor and still being Stage 1. Did they get clean margins the first time around? If so, I don't understand how it could be considered the same tumor. Also, did you say they did a second partial? That's also something pretty rare from hearing stories here on our board.
Hope you will keep sharing about how you are doing. I'm having the same issues as you.
Hugs,
Todd
P.S. Are you monitoring your blood pressure closely? Problems with adrenal insufficiency will show up as low blood pressure. That can cause dizziness and low energy. You should be monitoring this closely after losing an adrenal gland.
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Anxiety & Hypochondriatodd121 said:Anxiety and Hypochondria
I'm with you. I also lost my right adrenal gland to a second tumor.
I have the anxiety you speak of and also the worry about anything that changes in my body thinking it's a new tumor.
I'd say when you have symptoms, let them go for a week or two (unless they are really serious) and see if they go away. If they do, it's not a recurrence. I'm trying this approach now. It has been helping me. I do have terrible anxiety at first. If it hangs on, I write it down and when I see my doctor (either the primary or the oncologist), I tell them about it. I have to write it down, because when I'm in the office I find myself not thinking about those things.
I don't know that it's impossible that we are more anxious or moody from losing an adrenal gland. I don't honestly think they really know for sure.
I know you have enough to worry about, but Stage 1 recurrence probably is not virtually "none". It's somewhere between 3-7%.
Can you please share your diagnosis with us on the second tumor? It's very rare to hear that someone got a tumor in the same location in the kidney. Was this considered a metastasis? Are you still Stage 1? I've never heard of anyone having another tumor and still being Stage 1. Did they get clean margins the first time around? If so, I don't understand how it could be considered the same tumor. Also, did you say they did a second partial? That's also something pretty rare from hearing stories here on our board.
Hope you will keep sharing about how you are doing. I'm having the same issues as you.
Hugs,
Todd
P.S. Are you monitoring your blood pressure closely? Problems with adrenal insufficiency will show up as low blood pressure. That can cause dizziness and low energy. You should be monitoring this closely after losing an adrenal gland.
Thank you for your response. I agree, the recurrence rate my Dr. gave me is 3%. I'm trying to be optimistic and grateful for the odds!
The path report from the first procedure did not indicate clean margin. Dr. said the tumor was upper pole and difficult to reach with the robotic arms. He was hopeful that cauterizing killed any possible remaining cells, and ordered the first CT at 3 months. And that was a good thing, because there were obviously cells left behind. The path report from the second surgery did show clean margins.
With the next CT not until June, I have let fear and anxiety overtake me. I definitely appreciate your advice to take notes, and give it a couple of weeks. I had my bp checked last week--132/80. Slightly high, and I am crediting that to anxiety.
Again, thank you, Todd, for your response. I am appreciative of the love and support from my family and friends, and now getting advice from someone who has "been there" definitely helps!
I hope your recovery continues on a positive path!
Suzanne
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Hi Suzanne,todd121 said:Anxiety and Hypochondria
I'm with you. I also lost my right adrenal gland to a second tumor.
I have the anxiety you speak of and also the worry about anything that changes in my body thinking it's a new tumor.
I'd say when you have symptoms, let them go for a week or two (unless they are really serious) and see if they go away. If they do, it's not a recurrence. I'm trying this approach now. It has been helping me. I do have terrible anxiety at first. If it hangs on, I write it down and when I see my doctor (either the primary or the oncologist), I tell them about it. I have to write it down, because when I'm in the office I find myself not thinking about those things.
I don't know that it's impossible that we are more anxious or moody from losing an adrenal gland. I don't honestly think they really know for sure.
I know you have enough to worry about, but Stage 1 recurrence probably is not virtually "none". It's somewhere between 3-7%.
Can you please share your diagnosis with us on the second tumor? It's very rare to hear that someone got a tumor in the same location in the kidney. Was this considered a metastasis? Are you still Stage 1? I've never heard of anyone having another tumor and still being Stage 1. Did they get clean margins the first time around? If so, I don't understand how it could be considered the same tumor. Also, did you say they did a second partial? That's also something pretty rare from hearing stories here on our board.
Hope you will keep sharing about how you are doing. I'm having the same issues as you.
Hugs,
Todd
P.S. Are you monitoring your blood pressure closely? Problems with adrenal insufficiency will show up as low blood pressure. That can cause dizziness and low energy. You should be monitoring this closely after losing an adrenal gland.
I second everything Todd just told you and asked. It would be helpful to know a ittle more about your story as it sounds pretty unusual. Concerning your state of mind I can certainly relate because the diagnosis and surgery and the "C" world are not events that leave us unscarred, it is like living thru a big hurricane, tornado or earthquake in our lives, in our body and our minds! But, we ARE alive and we come out stronger. I was and still am a hypocondriac... but so much less now! Why? well maybe because I see we can survive and deal with things, also because I can't afford too, my life would be a nightmare. Slowly, you will relax a little, you will start slaying the fear dragons but it takes a little time. Go easy on yourself.
Do as Todd says about the aches and pains, keep them in check and give them some time. Im recovering from a cold rght now and it didn't worry me and it has lasted about a week but in October I had one and was sooooo worried it was a metastasis that I had a terrible, terrible month and a half and saw 4 doctors, drove myself crazy and it did not go away until the day of my scan and when I was told that day that everything was ok, the cold and all its symptoms went away! The mind is a powerful thing and it works both ways.
Be alert but don't let your mind run wild. That is what Im learning to do. Sometimes Im really good at it, others not so much!
Be well,
Marosa
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Thank you Marosa!marosa said:Hi Suzanne,
I second everything Todd just told you and asked. It would be helpful to know a ittle more about your story as it sounds pretty unusual. Concerning your state of mind I can certainly relate because the diagnosis and surgery and the "C" world are not events that leave us unscarred, it is like living thru a big hurricane, tornado or earthquake in our lives, in our body and our minds! But, we ARE alive and we come out stronger. I was and still am a hypocondriac... but so much less now! Why? well maybe because I see we can survive and deal with things, also because I can't afford too, my life would be a nightmare. Slowly, you will relax a little, you will start slaying the fear dragons but it takes a little time. Go easy on yourself.
Do as Todd says about the aches and pains, keep them in check and give them some time. Im recovering from a cold rght now and it didn't worry me and it has lasted about a week but in October I had one and was sooooo worried it was a metastasis that I had a terrible, terrible month and a half and saw 4 doctors, drove myself crazy and it did not go away until the day of my scan and when I was told that day that everything was ok, the cold and all its symptoms went away! The mind is a powerful thing and it works both ways.
Be alert but don't let your mind run wild. That is what Im learning to do. Sometimes Im really good at it, others not so much!
Be well,
Marosa
Hi Marosa,
Thank you for your advice. So many people tell me "you are going to be fine" and "it's over, you are ok", but they haven't walked in my shoes. I think what I needed to hear the most is that it's okay and natural to feel the way I do. I've been working really hard at being optimistic, but like you, sometimes I'm not so good at it--like today. I need to remind myself more often that I can't let "C" dictate how I feel each and every day.
I am so happy I found this group, it is exactly what I need. I will continue to read previous posts, I'm getting some good information. And I will post my progress as well.
Your words are inspiring, thank you!
I hope you continue to heal, mind and body!Suzanne
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Welcome, Suzanne!
I really feel for you. You do have a bit of an unusual situation. First the cancer diagnosis is a lot to swallow, but having the second tumor show up must be a tough one.
Most of us have had a hard time getting over the initial shock...and then there is the hypochondriac that comes out in us. Try not to worry too much....it won't do you any good -or change the outcome!
Keep seeing your doctor and checking things out. Please post here with any questions or concerns - or just to vent. We are here for each other. I don't know what I would do without this wonderful group!
Keep us posted!!
Hugs
Jojo
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Food for thought...
Is it possible that, since the margins were not clear, that this was part of the original tumor that was just left behind rather than new growth? 1 cm growth in just 3 months seems extreme. What was the subtype? I assume that the 1 cm tumor was in the same place as the old one and was the subtype the same for this small mass?
Every time I get some strange pain I wonder "is this the cancer"? Heck I was like that before I was diagnosed and I am even worse now.
Jason
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Suzanne, my open partial
Suzanne, my open partial nephrectomy was in July 2014 to remove a stage 1 2.9 cim tumor from my right kidney. About 6 months after my surgery, I had the worst back pain I had ever experienced. I did not go to work for a week or so. It was brutal. I could not recall any specific event that would have caused the back pain . I suspect that it may have had something to do with the surgery, as the surgeon had to cut through a lot of muscle and tissue. I had another bout of minor back pain last December, so maybe it is a seasonal thing. Any ache or pain in the back or near the incision does tend to get me thinking whether it could be related to my surgery. I just had my 1.5 year scans and followup, and I have also been having minor pain around hte bottom of my rib cage near the incision. Nothing showed up on my scans, and my doctor said that I have nothing to worry about. Prior to all of this, I would have considered myself the opposite of a hypochondriac. I typically ignored aches and pains. Like you, I have been told I have a very low risk of recurrence. I am trying to find balance between vigilance and moving forward and forgetting I was diagnosed with kidney cancer.
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I'm so sorry you had to goPositive_Mental_Attitude said:Suzanne, my open partial
Suzanne, my open partial nephrectomy was in July 2014 to remove a stage 1 2.9 cim tumor from my right kidney. About 6 months after my surgery, I had the worst back pain I had ever experienced. I did not go to work for a week or so. It was brutal. I could not recall any specific event that would have caused the back pain . I suspect that it may have had something to do with the surgery, as the surgeon had to cut through a lot of muscle and tissue. I had another bout of minor back pain last December, so maybe it is a seasonal thing. Any ache or pain in the back or near the incision does tend to get me thinking whether it could be related to my surgery. I just had my 1.5 year scans and followup, and I have also been having minor pain around hte bottom of my rib cage near the incision. Nothing showed up on my scans, and my doctor said that I have nothing to worry about. Prior to all of this, I would have considered myself the opposite of a hypochondriac. I typically ignored aches and pains. Like you, I have been told I have a very low risk of recurrence. I am trying to find balance between vigilance and moving forward and forgetting I was diagnosed with kidney cancer.
I'm so sorry you had to go through this twice. Once is quite enough. I really do think that the first time he did not get clear margins and the original cells grew again. I don't think it's a second, independent tumor but due to the "seeds" being left behind the first time. Since this time he got clear margins, it's probably the last of it. But you're having regular follow up scans so that's a good thing.
As for panic, crying, and anxiety, been there done that, and still do it at times and I'm almost 2 years past my partial open neph. Everything is filtered through the C word; every little ache and pain. And no, unless someone went through this they have no idea. They may sympathetic and caring and loving and supportive and there for us but it's impossible to imagine what it does to your head unless you've been told you have cancer. So I think it's perfectly natural, especially since yours was not that long ago plus you had to go through it twice. With time it will get better, and with each clear scan follow up you will breathe a little easier. Frankly, I don't think the fear and anxiety will ever go completely away but maybe I'm wrong.
Don't be afraid to discuss symptoms with your doctor. That's what they're getting paid for. And I'd rather they thought I was a hypochondriac then to miss something that should have been checked.
Wishing you the best!
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Totally Normal
Suzanne,
Hypochondria is totally normal. I had it bad last scan time... It's almost like the 1 year hurdle was a milestone for me. I keep telling myself I won't be that way next time... But I know I will. Don't beat yourself up over it. As for the pain, my last surgery for my gallbladder was a bit of a war zone; it took me a few months to get rid of the nagging pain. Rememeber that even though the incisions may be in one particular spot, the muscles are all interconnected and sometimes your body needs to get used to the intrusion. I had a 7-inch incision on my gallbladder surgery and it will probably cause twinges of pain for the rest of my life.
I am pretty sure he removed my adrenal gland (even though there wans't any mention of it in the pathology; I keep forgetting to ask him about that), but I can't say I've had issues with fatigue because of that.
But those on the board who are urging you to ask more questions about your particular case aren't trying to scare you, even though I know they probably are. But I need to lend my voice to that. Surgeons are like sharks; they're very good at one particular thing and they don't really see the big picture when it comes to RCC. They take it out and they like say "You're cured!"
But I would think very hard about seeing an RCC-specialist oncologist. Make sure you are classified correctly. It will make a BIG DIFFERENCE in the way you are scanned, how closely you are watched and also what you are entitled to from an insurance standpoint. You need to make sure that another doctor agrees with the surgeon's assessment that you are, in fact, Stage 1. Even if you are reclassified, it sounds like your tumors were all confined to the kidney and even though it is somewhat unusual to see a recurrence like yours, your prognosis sounds excellent. But I think we would all like a closer set of eyes on us with regards to cancer scans.
Make sure you fight for you!
- Jay
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Wondering how long the backPositive_Mental_Attitude said:Suzanne, my open partial
Suzanne, my open partial nephrectomy was in July 2014 to remove a stage 1 2.9 cim tumor from my right kidney. About 6 months after my surgery, I had the worst back pain I had ever experienced. I did not go to work for a week or so. It was brutal. I could not recall any specific event that would have caused the back pain . I suspect that it may have had something to do with the surgery, as the surgeon had to cut through a lot of muscle and tissue. I had another bout of minor back pain last December, so maybe it is a seasonal thing. Any ache or pain in the back or near the incision does tend to get me thinking whether it could be related to my surgery. I just had my 1.5 year scans and followup, and I have also been having minor pain around hte bottom of my rib cage near the incision. Nothing showed up on my scans, and my doctor said that I have nothing to worry about. Prior to all of this, I would have considered myself the opposite of a hypochondriac. I typically ignored aches and pains. Like you, I have been told I have a very low risk of recurrence. I am trying to find balance between vigilance and moving forward and forgetting I was diagnosed with kidney cancer.
Wondering how long the back pain lasted? I'm almost a week now. I've been to the chiropractor and I've tried yoga. I get a little relief with yoga, but not enough to keep me from getting paranoid. I also have some discomfort below the ribs. Glad you shared! I'm so happy for you getting clean scans! It certainly helps me to hear the successes!
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Jay, you hit the nail on thejason.2835 said:Totally Normal
Suzanne,
Hypochondria is totally normal. I had it bad last scan time... It's almost like the 1 year hurdle was a milestone for me. I keep telling myself I won't be that way next time... But I know I will. Don't beat yourself up over it. As for the pain, my last surgery for my gallbladder was a bit of a war zone; it took me a few months to get rid of the nagging pain. Rememeber that even though the incisions may be in one particular spot, the muscles are all interconnected and sometimes your body needs to get used to the intrusion. I had a 7-inch incision on my gallbladder surgery and it will probably cause twinges of pain for the rest of my life.
I am pretty sure he removed my adrenal gland (even though there wans't any mention of it in the pathology; I keep forgetting to ask him about that), but I can't say I've had issues with fatigue because of that.
But those on the board who are urging you to ask more questions about your particular case aren't trying to scare you, even though I know they probably are. But I need to lend my voice to that. Surgeons are like sharks; they're very good at one particular thing and they don't really see the big picture when it comes to RCC. They take it out and they like say "You're cured!"
But I would think very hard about seeing an RCC-specialist oncologist. Make sure you are classified correctly. It will make a BIG DIFFERENCE in the way you are scanned, how closely you are watched and also what you are entitled to from an insurance standpoint. You need to make sure that another doctor agrees with the surgeon's assessment that you are, in fact, Stage 1. Even if you are reclassified, it sounds like your tumors were all confined to the kidney and even though it is somewhat unusual to see a recurrence like yours, your prognosis sounds excellent. But I think we would all like a closer set of eyes on us with regards to cancer scans.
Make sure you fight for you!
- Jay
Jay, you hit the nail on the head regarding surgeons--my urologist/surgeon is exactly that. That is why I am hesitant to contact him with my questions, as he seems distant. Kind of like when he asks "how are you", he means it only as a pleasantry. During my second hospital recovery, I was given contact information for the Oncology Unit and urged to make an appointment. That same day when my doctor came in on rounds, he saw that info on my table and told me that I don't need oncology services because this issue won't be giving me any more trouble. So I ignored it. But I did notice that the urologist lists urological oncology in his credentials.
I lost my grandfather to colon and pancreatic cancers, and that has been my only exposure to cancer. That leaves me very ignorant on the subject. I appreciate your advice to contact Oncology. I just researched my hospital's oncology unit on the internet, and found only treatment and support service information. Since I am not needing treatment, please tell me what other services oncology provides, and how I should approach it. My follow-up plan with the urologist includes CTs every six months for two years, then annually for another three years. Would oncology be taking over the follow-up, or is it in addition?
I appreciate the info!
Suzanne
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Follow UpsSuzanne 20 said:Jay, you hit the nail on the
Jay, you hit the nail on the head regarding surgeons--my urologist/surgeon is exactly that. That is why I am hesitant to contact him with my questions, as he seems distant. Kind of like when he asks "how are you", he means it only as a pleasantry. During my second hospital recovery, I was given contact information for the Oncology Unit and urged to make an appointment. That same day when my doctor came in on rounds, he saw that info on my table and told me that I don't need oncology services because this issue won't be giving me any more trouble. So I ignored it. But I did notice that the urologist lists urological oncology in his credentials.
I lost my grandfather to colon and pancreatic cancers, and that has been my only exposure to cancer. That leaves me very ignorant on the subject. I appreciate your advice to contact Oncology. I just researched my hospital's oncology unit on the internet, and found only treatment and support service information. Since I am not needing treatment, please tell me what other services oncology provides, and how I should approach it. My follow-up plan with the urologist includes CTs every six months for two years, then annually for another three years. Would oncology be taking over the follow-up, or is it in addition?
I appreciate the info!
Suzanne
My surgeon (urologic oncologist) also did not refer me to an oncologist. My surgeon was terrific. However, since they will not be the one to treat it if it spreads, my opinion is they are not as invested as a medical oncologist would be (this is who would treat/manage any metastatic disease).
I asked to see a medical oncologist. My surgeon suggested one at the same hospital. I saw him, but he had no experience with RCC. Because of that I found 2 more oncologists that are experts in RCC. Their advice completely contradicted the first oncologist (but they agreed with each other pretty much)! They both suggested my prognosis was more serious and that I should have closer followups and even gave me the option of drug trials. I'm still with one of those oncologists at a national cancer center.
If I were you with your situation, I'd do 2 things: I'd get a second opinion on your diagnosis and the job this first surgeon has done. If you can find a urologic oncologist at a cancer center or a large university hospital (someone with as much RCC experience as possible), it would be worth it. With regards to second opinions, I've been told by mutiple doctors: "all good physicians will be happy to have you get another opinion and will encourage it, anything else is a red flag". So, getting another opinion is worthwhile, even if just to give you peace of mind.
Secondly, I'd find a medical oncologist with RCC experience if at all possible to follow you. They can do additional scans just to make sure of your current staging, may recommend clinical trials, and will know the very latest protocols for following you. The added benefit, if you ever do need followup care for met(s), is that you'll be very familiar with the doctor that will be treating you and they'll have all your scans and tests already on file.
Getting these second opinions is a little bit of a pain. I was very happy I did it. If nothing else, it will give you peace of mind that you are getting care that is the best that you can get in your situation. I was amazed how much difference of opinion there was among the doctors I saw. I think they were all "good" doctors. I did find a difference in knowledge between the doctors that see a lot of RCC patients and that attend conferences, do research, and write papers on RCC compared to the general medical oncologists who rarely see an RCC patient. One of the specialists I saw said he sees 5-6 RCC patients a day while a regular oncologist might see that in a career or just 1 a year. Of course if you have trouble finding one of these specialists, I'd go with someone that has some experience and lots of experience in a similar cancer (melanoma, for example, is quite similar to RCC).
Just call the medical oncologist's office and explain your situation and that you are looking for a consult for a second opinion. You want to get it soon if possible. When you go in, ask if they would be willing to follow you (if you're interested in that). At least this is what I did.
Hope this helps.
Best wishes to you,
Todd
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Follow ups (2)Suzanne 20 said:Jay, you hit the nail on the
Jay, you hit the nail on the head regarding surgeons--my urologist/surgeon is exactly that. That is why I am hesitant to contact him with my questions, as he seems distant. Kind of like when he asks "how are you", he means it only as a pleasantry. During my second hospital recovery, I was given contact information for the Oncology Unit and urged to make an appointment. That same day when my doctor came in on rounds, he saw that info on my table and told me that I don't need oncology services because this issue won't be giving me any more trouble. So I ignored it. But I did notice that the urologist lists urological oncology in his credentials.
I lost my grandfather to colon and pancreatic cancers, and that has been my only exposure to cancer. That leaves me very ignorant on the subject. I appreciate your advice to contact Oncology. I just researched my hospital's oncology unit on the internet, and found only treatment and support service information. Since I am not needing treatment, please tell me what other services oncology provides, and how I should approach it. My follow-up plan with the urologist includes CTs every six months for two years, then annually for another three years. Would oncology be taking over the follow-up, or is it in addition?
I appreciate the info!
Suzanne
Given that you had a (new?) tumor that grew 1 cm in 3 months, is waiting 6 months for a followup a good idea? My surgeon had a much more lax schedule compared to the medical oncologists and was not doing a CT of my lungs, but a lung xray instead.
What kind of scans are they doing? Of which parts of your body?
My followups were CT of chest/abdomen and pelvis every 4 months for first year, then every 6 months for second year. When I had my recurrence, I went on a 3 month cycle. But I was Stage 3 and then Stage 4.
If you have oncology follow you, it would be instead of the surgeon, not in addition.
What is your current diagnosis by the way? You should have a stage (1,2,3,4). Was it RCC? And what type? Clear cell?
Hugs,
Todd
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Dr believes the second tumortodd121 said:Follow ups (2)
Given that you had a (new?) tumor that grew 1 cm in 3 months, is waiting 6 months for a followup a good idea? My surgeon had a much more lax schedule compared to the medical oncologists and was not doing a CT of my lungs, but a lung xray instead.
What kind of scans are they doing? Of which parts of your body?
My followups were CT of chest/abdomen and pelvis every 4 months for first year, then every 6 months for second year. When I had my recurrence, I went on a 3 month cycle. But I was Stage 3 and then Stage 4.
If you have oncology follow you, it would be instead of the surgeon, not in addition.
What is your current diagnosis by the way? You should have a stage (1,2,3,4). Was it RCC? And what type? Clear cell?
Hugs,
Todd
Dr believes the second tumor was cells left behind from the first surgery. The path report was not clean, so he recommended doing the first abdominal ct (lungs to pelvis) at 3 months post-op. I was stage 1 (5cm) RCC clear cell, upper pole and encased in the kidney. The second was 1cm. When my husband spoke to dr after the second surgery, he said dr looked and sounded much more confident than he did after the first surgery. And fortunately the path report indicated clean margins. The day I was discharged, dr said he felt good about this not giving us any more trouble. For that reason, he said we wouldn't need to do another CT for 6 months. He reiterated that in my 8-week checkup. I know I need to have faith in his experience and expertise, but sometimes fear gets the best of me. I have learned, tho, that knowledge is power. The better educated I get about this, the more power I will have over fear!
Hang in there, Todd! You are a blessing to many!
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Definitely food for thought!todd121 said:Follow Ups
My surgeon (urologic oncologist) also did not refer me to an oncologist. My surgeon was terrific. However, since they will not be the one to treat it if it spreads, my opinion is they are not as invested as a medical oncologist would be (this is who would treat/manage any metastatic disease).
I asked to see a medical oncologist. My surgeon suggested one at the same hospital. I saw him, but he had no experience with RCC. Because of that I found 2 more oncologists that are experts in RCC. Their advice completely contradicted the first oncologist (but they agreed with each other pretty much)! They both suggested my prognosis was more serious and that I should have closer followups and even gave me the option of drug trials. I'm still with one of those oncologists at a national cancer center.
If I were you with your situation, I'd do 2 things: I'd get a second opinion on your diagnosis and the job this first surgeon has done. If you can find a urologic oncologist at a cancer center or a large university hospital (someone with as much RCC experience as possible), it would be worth it. With regards to second opinions, I've been told by mutiple doctors: "all good physicians will be happy to have you get another opinion and will encourage it, anything else is a red flag". So, getting another opinion is worthwhile, even if just to give you peace of mind.
Secondly, I'd find a medical oncologist with RCC experience if at all possible to follow you. They can do additional scans just to make sure of your current staging, may recommend clinical trials, and will know the very latest protocols for following you. The added benefit, if you ever do need followup care for met(s), is that you'll be very familiar with the doctor that will be treating you and they'll have all your scans and tests already on file.
Getting these second opinions is a little bit of a pain. I was very happy I did it. If nothing else, it will give you peace of mind that you are getting care that is the best that you can get in your situation. I was amazed how much difference of opinion there was among the doctors I saw. I think they were all "good" doctors. I did find a difference in knowledge between the doctors that see a lot of RCC patients and that attend conferences, do research, and write papers on RCC compared to the general medical oncologists who rarely see an RCC patient. One of the specialists I saw said he sees 5-6 RCC patients a day while a regular oncologist might see that in a career or just 1 a year. Of course if you have trouble finding one of these specialists, I'd go with someone that has some experience and lots of experience in a similar cancer (melanoma, for example, is quite similar to RCC).
Just call the medical oncologist's office and explain your situation and that you are looking for a consult for a second opinion. You want to get it soon if possible. When you go in, ask if they would be willing to follow you (if you're interested in that). At least this is what I did.
Hope this helps.
Best wishes to you,
Todd
Definitely food for thought! I will absorb the info you gave and go from there. The doctor did recommend a 2nd opinion with the second diagnosis. I took him up on that offer and went to a cancer center. I was very relieved when the cancer center doctor agreed with the diagnosis and recommended the same procedure (open partial neph) as my doctor. The only point they differed on is the cancer center dr said he would have done the first procedure open versus robotic assist/lap. Sure, hindsight is 20/20!
In any event, the more information I can get to better understand what is/has happened to me, the better off I am.
Todd, you and everyone who has commented on this thread have been a great source of info and support that I desperately need! I can't thank you all enough!
Blessings,
Suzanne
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