post-op appt and path report

cww71964

Hi All,
I just got back from my post op doctor appointment and I am not sure how I am feeling. The good: I am feeling great physically. My staples were removed and I am cleared to go back to work next Monday, which will be just 20 days post-op. The mass actually ended up being smaller than what the ct showed (4cm vs 4.5cm). Margins uninvolved, not sure if that is good or bad. The grade is 2 but the stage is 3 due to where the mass started growing near the renal vein. The report states extension into the renal vein but otherwise contained in kidney. The dr said not to worry, that it was only classified as stage 3 because of location but that surgery got it all. But he also added that because of the location, there could be cancer cells in my blood. He said followup is still the same, chest xray in 3 mths, ct scan in 6. Should I find an oncologist as well? As always your info, wisdom, and inspiration is appreciated.

Thanks,
Wayne

icemantoo

So far, so good
Wayne,

Sounds good to me. Not perfect, but good. There is always a small chance for recurrance. It sounds like the doctor was saying it looks like everything is OK, but as a doctor I can not guarantee it. Until and unless there are problems or future decisions to make it sounds like it is a little early to be thinking about an oncologist.Others are free to weigh in with more optimism than mine.

Best wishes,

Icemantoo

garym

Good news...
Hi Wayne,

Gotta agree with the iceman, no cause for alarm at this point. The follow-up plan is your best defense at this point, I'd wait on an oncologist until there is something to worry about which probably will never happen. Its more important to live and enjoy every day in the meantime.

Be vigilant, be healthy,

Gary

foxhd

garym said:

Good news...
Hi Wayne,

Gotta agree with the iceman, no cause for alarm at this point. The follow-up plan is your best defense at this point, I'd wait on an oncologist until there is something to worry about which probably will never happen. Its more important to live and enjoy every day in the meantime.

Be vigilant, be healthy,

Gary

oncologist
Wayne, I have a different feeling about this. I say, go looking for an oncologist. Nothing to lose but a co-payment for an office visit. Let them review your pathology report. Let them be in on your plan of care early. I think that it has been established on this forum that should you need further care in the future, that waiting for appointments is stressfull. Stay a step ahead. They may give you a good reason to have a scan in 3 months. Not 6. Nothing to lose.

Minnesota Girl

I agree with Fox
I don't think there's any harm in meeting an oncologist who specializes in Renal Cell cancer. He/she may or may not recommend a different strategy, but may offer a different take on things, or even be aware of a clinical trial from which you might benefit.

My tumor was only stage 1, but grade 3 and my follow-up care is in the hands of an oncologist. As my urologist said "I'm a plumber, now you need an electrician."

icemantoo

Minnesota Girl said:

I agree with Fox
I don't think there's any harm in meeting an oncologist who specializes in Renal Cell cancer. He/she may or may not recommend a different strategy, but may offer a different take on things, or even be aware of a clinical trial from which you might benefit.

My tumor was only stage 1, but grade 3 and my follow-up care is in the hands of an oncologist. As my urologist said "I'm a plumber, now you need an electrician."

Tie vote and confession
Since there are 2 yes votes and 2 no votes for seeing an Oncologist I must confess that I voted no because my Urologist was already a board cetified Oncologist and therefore I did not see the need. Upon further reflection of your situation and not mine why not see what an Oncologist says as well.

Best wishes,

Icemantoo

cww71964

icemantoo said:

Tie vote and confession
Since there are 2 yes votes and 2 no votes for seeing an Oncologist I must confess that I voted no because my Urologist was already a board cetified Oncologist and therefore I did not see the need. Upon further reflection of your situation and not mine why not see what an Oncologist says as well.

Best wishes,

Icemantoo

Thanks
Thank you all for your advice. I have an appointment with my family doctor tomorrow and will get her opinion as well. I have researched a little and my oncologists options in my area seem limited. It seems our "gift" is a different animal than the others.

Health and happiness to all,
Wayne

Jamie1.3cm

cww71964 said:

Thanks
Thank you all for your advice. I have an appointment with my family doctor tomorrow and will get her opinion as well. I have researched a little and my oncologists options in my area seem limited. It seems our "gift" is a different animal than the others.

Health and happiness to all,
Wayne

On the other hand...
...there is no treatment for RCC (except surgical removal of the primary tumor) until and unless it metastasizes somewhere. That's why the doc is being very specific about follow up chest xray and ct scan in 6 months to check for any mets. I think anything an oncologist would do, if anything, at this point, would be shooting in the dark. Over-treatment. As with everyone else, just my opinion.

foxhd

Jamie1.3cm said:

On the other hand...
...there is no treatment for RCC (except surgical removal of the primary tumor) until and unless it metastasizes somewhere. That's why the doc is being very specific about follow up chest xray and ct scan in 6 months to check for any mets. I think anything an oncologist would do, if anything, at this point, would be shooting in the dark. Over-treatment. As with everyone else, just my opinion.

no treatment
That's not necessarily the case. The trial I was offered in the spring was for people who had nephectomies and had no evidence of mets. I guess a study to see if they could keep future mets at bay. I'm thinking that if the study was offered more locally, I just may have entered it........as I am thinking about it, It was my local oncologist who steered me to that study. She was surprised and disappointed that I didn't enter it. It just had too much travel, potential miserable side effects, and a variety of doses and placebos. Just had no idea what I might have been given. The bottom line was that if I was only going to live another year, I was going to have a great summer and not feel miserable and unable to do the things that are important to me. ie: golf and motorcycles.

Texas_wedge

foxhd said:

no treatment
That's not necessarily the case. The trial I was offered in the spring was for people who had nephectomies and had no evidence of mets. I guess a study to see if they could keep future mets at bay. I'm thinking that if the study was offered more locally, I just may have entered it........as I am thinking about it, It was my local oncologist who steered me to that study. She was surprised and disappointed that I didn't enter it. It just had too much travel, potential miserable side effects, and a variety of doses and placebos. Just had no idea what I might have been given. The bottom line was that if I was only going to live another year, I was going to have a great summer and not feel miserable and unable to do the things that are important to me. ie: golf and motorcycles.

Next stage
Fox - golf and bikes - I sense the possibility of a new sport - nah! maybe not.

I think I can agree with both sides in this debate. There's no cause for panic at this juncture but, nonetheless, getting an oncologist's input sounds like a good idea. It's interesting to see iceman and Fox both musing over their past experience and re-analysing. Count me, on balance, on the oncologist side, Wayne. They are very distinct specialties and I can express it no better than Gerald White has done in his book "Three Months to ----- > Life" when, with characteristic astuteness, he says:

"It is therefore no more logical to bet your life on the surgeon to manage the ongoing treatment than it would have been to expect the oncologist to perform the initial surgery."

Put that way, and given the stakes, it seems to me an easier call than might have, at first, appeared. Suitable specialists may not be thick on the ground in Indian Hills Wayne, but surely there must be Renal Oncologists in Reno!?

cww71964

Texas_wedge said:

Next stage
Fox - golf and bikes - I sense the possibility of a new sport - nah! maybe not.

I think I can agree with both sides in this debate. There's no cause for panic at this juncture but, nonetheless, getting an oncologist's input sounds like a good idea. It's interesting to see iceman and Fox both musing over their past experience and re-analysing. Count me, on balance, on the oncologist side, Wayne. They are very distinct specialties and I can express it no better than Gerald White has done in his book "Three Months to ----- > Life" when, with characteristic astuteness, he says:

"It is therefore no more logical to bet your life on the surgeon to manage the ongoing treatment than it would have been to expect the oncologist to perform the initial surgery."

Put that way, and given the stakes, it seems to me an easier call than might have, at first, appeared. Suitable specialists may not be thick on the ground in Indian Hills Wayne, but surely there must be Renal Oncologists in Reno!?

trial
I saw my family doctor today and while she told me what we know about rcc being treated with just surgery she also said she would do some research and give me her opinion in a few days. Her point was since it was in the renal vein, maybe an oncologist would help.
Fox, there is a clinical trial going on here that sounds exactly like the one you described, basically to see if it will prevent recurrence. The drug is called Everolimus I believe. I have contacted the doctor conducting the research, an oncologist, and they would like to see my records. I think I may give it a go if I qualify. I do know what you mean about not wanting to waste time feeling bad. The weather here was nice yesterday and I almost brought the harley out of hibernation for a little ride, would have for sure today but it was rainy and cold. As always, thanks to all for your input.

Health and happiness,
Wayne

Jamie1.3cm

cww71964 said:

trial
I saw my family doctor today and while she told me what we know about rcc being treated with just surgery she also said she would do some research and give me her opinion in a few days. Her point was since it was in the renal vein, maybe an oncologist would help.
Fox, there is a clinical trial going on here that sounds exactly like the one you described, basically to see if it will prevent recurrence. The drug is called Everolimus I believe. I have contacted the doctor conducting the research, an oncologist, and they would like to see my records. I think I may give it a go if I qualify. I do know what you mean about not wanting to waste time feeling bad. The weather here was nice yesterday and I almost brought the harley out of hibernation for a little ride, would have for sure today but it was rainy and cold. As always, thanks to all for your input.

Health and happiness,
Wayne

trials?
Yes, that's exactly my point about "shooting in the dark." It really is a personal decision whether or not to join a trial when you have no real evidence of needing one. That's why it's not considered a treatment for kidney cancer. You're not actually treating kidney cancer, just a chance of preventing it (its recurrence). And to subject yourself to the meds.... well, I wouldn't do it unless there was a VERY compelling reason for doing so. But that's just me. If the tumor was large, the margins were not clean, or mets had already been found, then I would be the first person in line for a trial.

sheryyboeger782

I don't think there's any
I don't think there's any harm in meeting an oncologist who specializes in Renal Cell cancer. He/she may or may not recommend a different strategy, but may offer a different take on things, or even be aware of a clinical trial from which you might benefit. - sinus infection symptoms | brown spotting

jhsu

cww71964 said:

trial
I saw my family doctor today and while she told me what we know about rcc being treated with just surgery she also said she would do some research and give me her opinion in a few days. Her point was since it was in the renal vein, maybe an oncologist would help.
Fox, there is a clinical trial going on here that sounds exactly like the one you described, basically to see if it will prevent recurrence. The drug is called Everolimus I believe. I have contacted the doctor conducting the research, an oncologist, and they would like to see my records. I think I may give it a go if I qualify. I do know what you mean about not wanting to waste time feeling bad. The weather here was nice yesterday and I almost brought the harley out of hibernation for a little ride, would have for sure today but it was rainy and cold. As always, thanks to all for your input.

Health and happiness,
Wayne

Everolimus trial
I quitted Everolimus/Afinitortrial trial in 2010 (see MDX-1106 thread), it was called RAD001 at that time and it was required to have had met RCC to begin with. What is the drug's current trial status?

Because Everolimus works as a target drug treatment, I would vote for no-target-no-treatment. IMHO

Jon

DMike

jhsu said:

Everolimus trial
I quitted Everolimus/Afinitortrial trial in 2010 (see MDX-1106 thread), it was called RAD001 at that time and it was required to have had met RCC to begin with. What is the drug's current trial status?

Because Everolimus works as a target drug treatment, I would vote for no-target-no-treatment. IMHO

Jon

Everolimus trial
I was asked to participate in the Everolimus trial a couple of weeks ago. I had an open partial on 12/6/11. I was at stage 1 with no mets and clear margins. The way it was explained to me was they were using the drug on stage 3 & 4 patients and they were interested in seeing if it improved recurrence in early stage kidney cancer. You have to enter the trial within 42 days (I believe) of surgery.
I would have a 2.5 hour drive each way (every 6 weeks), I would have to cover all expenses except the drug cost, the chance of being on the placebo and there was a long list of side effects. I just couldn't do it financially for sure and emotionally it would be very hard after going through surgery and getting a good report. I turned them down.

cww71964

sheryyboeger782 said:

I don't think there's any
I don't think there's any harm in meeting an oncologist who specializes in Renal Cell cancer. He/she may or may not recommend a different strategy, but may offer a different take on things, or even be aware of a clinical trial from which you might benefit. - sinus infection symptoms | brown spotting

trial
My family doc's opinion was that I didn't need to see an oncologist at this point. Today, I sent my records to the oncologist that is conducting the trial in my area. His office is about 5 miles from my work so it would be easy enough. I just want to hear more about the trial and to see if I even qualify. I also figure that if this doctor is the lead on the trial for this area, he must have some expertise in kidney cancer. There is a blog out there written by the wife of a man who has struggled with this disease for many years, think it is myhusbandskidneycancer.com. In it she writes that one of their biggest regrets was not consulting with an oncologist after his nephrectomy. I decided I am not going to have that regret.

happiness , health, and God bless all,
Wayne

Texas_wedge

cww71964 said:

trial
My family doc's opinion was that I didn't need to see an oncologist at this point. Today, I sent my records to the oncologist that is conducting the trial in my area. His office is about 5 miles from my work so it would be easy enough. I just want to hear more about the trial and to see if I even qualify. I also figure that if this doctor is the lead on the trial for this area, he must have some expertise in kidney cancer. There is a blog out there written by the wife of a man who has struggled with this disease for many years, think it is myhusbandskidneycancer.com. In it she writes that one of their biggest regrets was not consulting with an oncologist after his nephrectomy. I decided I am not going to have that regret.

happiness , health, and God bless all,
Wayne

trial
To this observer that looks like a wise decision Wayne. You've got nothing to lose by doing so and you're covering all the angles. Doubtless you'll keep us apprised of how matters develop from here.

cww71964

Texas_wedge said:

trial
To this observer that looks like a wise decision Wayne. You've got nothing to lose by doing so and you're covering all the angles. Doubtless you'll keep us apprised of how matters develop from here.

trial
Hi All,

So I met with the oncologist yesterday. Because I had some renal vein invasion, I am classified as an intermediate high risk of recurrence. This fact, along with everything thus far, qualify me for the trial. He wants a CT scan of the chest rather than x-ray and more blood work first. If that is all good then we will meet to discuss the trial in detail, side-effects, protocol, etc.

Health and happiness to all,

Wayne

Texas_wedge

cww71964 said:

trial
Hi All,

So I met with the oncologist yesterday. Because I had some renal vein invasion, I am classified as an intermediate high risk of recurrence. This fact, along with everything thus far, qualify me for the trial. He wants a CT scan of the chest rather than x-ray and more blood work first. If that is all good then we will meet to discuss the trial in detail, side-effects, protocol, etc.

Health and happiness to all,

Wayne

trial
It sounds as though the situation is being handled very sensibly Wayne. Doubtless you'll keep us all informed as matters progress. The point about renal vein involvement maybe addresses Jamie's question of whether there were good enough grounds for taking an action which is prophylactic rather than dealing with a known condition.

foxhd

Texas_wedge said:

trial
It sounds as though the situation is being handled very sensibly Wayne. Doubtless you'll keep us all informed as matters progress. The point about renal vein involvement maybe addresses Jamie's question of whether there were good enough grounds for taking an action which is prophylactic rather than dealing with a known condition.

trial
Good move Wayne. Regretting what we could have done is not a wise option.

garym

cww71964 said:

trial
Hi All,

So I met with the oncologist yesterday. Because I had some renal vein invasion, I am classified as an intermediate high risk of recurrence. This fact, along with everything thus far, qualify me for the trial. He wants a CT scan of the chest rather than x-ray and more blood work first. If that is all good then we will meet to discuss the trial in detail, side-effects, protocol, etc.

Health and happiness to all,

Wayne

Go for it...
Wayne,

I love the phrase "Attack with extreme prejudice!" when it comes to this disease. You have made a good decision, put the pedal to the metal and give it hell!!

Gary