RCC with lung mets ( updated cleaned up post)

Hd67xlch · April 2016

Hi all , this is my 1st post here, back in 2011 I was diagnosed with left rcc and had the kidney removed. Jan 2016 at my 5 year check up they found 2 lung mets in my right lower lobe. I had a traditional thorectomy and had my right lower lobe removed April 1st, I am now on day 5 in the hospital going to be released today. I had all the normal tests and was told it was only in the one lung lobe.

My question is, my oncologist wants me to go on Sutent after I'm healed up after the surgery, but I don't want to, what's the point if they don't see anything else. Why go through the chemotherapy side effects if there isn't any more visable cancer. Has anyone else been in this situation and what did you decide to do? I'm 57 years old and strong, I was off all pain meds after 72 hours in the hospital, Im now 6 days post surgery back at home and am sore but refuse to take any pain meds, I just dont like the way they make me feel. Ive only seen my oncologist once a few weeks ago, he is very young and to be honest I wasnt impressed, but it sometimes just awkward on the 1st visit so Im not judging him yet, Ive also read that most medical oncologists see very few kidney cancer patients in their careers.

Cancer/subtype rcc, clear cell, grade 2

2011 STAGING: T (5.9)

N x

M 0

Here are the tests they performed on me before the lung surgery in 2016

Chest x ray, ct scans with and without contrast of my chest and abdomen, nuclear bone scan, pet scan, needle lung biopsy, heart and pft tests, and nothing else but the 2 lung mets were found

Before surgery notes from oncologist. Recurrent: 2016 lung mets 2.3cm and 1.1cm, curative if resectable.

So if he is considering my cancer curative if the mets were resectable which they were, it seems to me he wants me on the Sutent as a precautionary treatment to prevent if from recurring again, if this is the case Im not willing to go that route, Im going back to see him later this month and will ask him straight up if this is the case.

Okay Ive updated and cleaned up this post and not using a phone I hope its easier to understand.

Thanks Frank

Footstomper · April 2016

Sutent

Have you had it before? Some people on here have been taking it for years, others found it did ruin their quality of life. You might be one of the lucky ones. There are lots of other drugs out there, perhaps you could try one of those, but first it sounds to me like you need to have a frank and honest talk with yyour doc.

sblairc · April 2016

Adjuvant therapy: I wouldn't do it

So it sounds like your doctor is recommending Sutent as "adjuvant therapy" to prevent your cancer from coming back.

It is my understanding that while they do clinical trials of this, it is NOT currently a recommended practice for someone who is CURRENTLY WITHOUT EVIDENCE OF metastatic DISEASE.

If you are, indeed, with no evidence of disease then you should not take it unless in a clinical trial setting. It is also my understanding that adjuvant therapy is not a proven method of preventing cancer from coming back. Prevailing research based on clinical trials.

Hope that helps.

Hd67xlch · April 2016

sblairc said:
Adjuvant therapy: I wouldn't do it
So it sounds like your doctor is recommending Sutent as "adjuvant therapy" to prevent your cancer from coming back.

It is my understanding that while they do clinical trials of this, it is NOT currently a recommended practice for someone who is CURRENTLY WITHOUT EVIDENCE OF metastatic DISEASE.

If you are, indeed, with no evidence of disease then you should not take it unless in a clinical trial setting. It is also my understanding that adjuvant therapy is not a proven method of preventing cancer from coming back. Prevailing research based on clinical trials.

Hope that helps.

F Cancer it's not a clinical

F Cancer it's not a clinical thing and I have no others mets than what was taken from my lung five days ago I 100% agree with your assessment and I believe my urologist will agree also thanks for the opinion. Im getting out of the hospital today at least something good is happening

todd121 · April 2016

Adjuvant Therapy

There's no approved adjuvant therapy. Actually, they already did a clinical trial with this approach (however it was on Stage 1-2 patients who had a nephrectomy to remove the tumor) and I'm pretty sure it's been published. It didn't help. See this article (sutent=sunitinib):

http://www.asco.org/press-center/adjuvant-sorafenib-and-sunitinib-do-not-improve-outcomes-locally-advanced-kidney-cancer

Print this out and show it to your doctor.

I believe there is another drug study going on that is giving this (or it might be votrient) to Stage 4 RCC patients that have had their mets resected. Maybe your doc wants you in that drug trial? My doc asked me to do this study last year after I had my adrenal met removed. I decided not to do it based on it not helping with Stage 1-2 (the above study).

You should find a medical oncologist that keeps up on RCC and the drug trials. I wouldn't take sutent under the advice of a urologist unless he's very involved with RCC research/follows it closely.

Having a consult with a good medical oncologist is advised. They also are more experienced with further staging and following Stage 4 patients like us. You should have a CT of chest/abdomen and pelvis with contrast if possible, perhaps a nuclear bone scan (to make sure you have no bone mets) and an MRI of your brain (with contrast). This last test may be optional, but I had to do it to make sure I was cancer free to be eligible for the drug trial. If they want to know I'm cancer free, I'd want the test too. These are the battery of tests my RCC doc ordered to make sure I had no more mets. (You'll need a followup CT after your surgery as a baseline for future comparisons. They always want this because the surgery changes your anatomy and it's easier to compare apples to apples on future scans).

Hope this helps and good luck to you.

Todd

Dutch1 · April 2016

When my cancer was

When my cancer was discovered, I was at stage 4. After surgery, I went on an Everolimus test trial. The purpose of the trial is to see whether administering the drug to stage 4 (maybe 3, too) patients would delay recurrence. The trial lasted a year. Six months after the trial ended, my cancer came back.

The Everolimus did have some side effects which I could have done without. That's very true. I went on the trial in spite of the possible side effects simply because I wanted to do what I could to go after the cancer ... regardless of whether or not the strategy was approved. And, maybe the test results will open a new door for future RCC stage 4 patients.

It's now been a total of 3 plus years since surgery.

No one can tell you whether the Sutent will be of benefit to you under your present circumstances. It's the same with "approved" treatments ... no one knows for sure what will have an impact on your cancer. If it was me, I'd give it a try. If the side effects of the Sutent are too much for you, either cut it back or stop taking it. For me, the risk of recurrence was greater than the risks presented by the drug. I haven't regretted being on Everolimus as a preventative strategy.

Best wishes for you.

Dutch

APny · April 2016

Dutch1 said:
When my cancer was
When my cancer was discovered, I was at stage 4. After surgery, I went on an Everolimus test trial. The purpose of the trial is to see whether administering the drug to stage 4 (maybe 3, too) patients would delay recurrence. The trial lasted a year. Six months after the trial ended, my cancer came back.

The Everolimus did have some side effects which I could have done without. That's very true. I went on the trial in spite of the possible side effects simply because I wanted to do what I could to go after the cancer ... regardless of whether or not the strategy was approved. And, maybe the test results will open a new door for future RCC stage 4 patients.

It's now been a total of 3 plus years since surgery.

No one can tell you whether the Sutent will be of benefit to you under your present circumstances. It's the same with "approved" treatments ... no one knows for sure what will have an impact on your cancer. If it was me, I'd give it a try. If the side effects of the Sutent are too much for you, either cut it back or stop taking it. For me, the risk of recurrence was greater than the risks presented by the drug. I haven't regretted being on Everolimus as a preventative strategy.

Best wishes for you.

Dutch

I agree with Todd. Do not go

I agree with Todd. Do not go by just the word of the urologist no matter how much you trust and like him. RCC is a unique disease and not many are experienced with it. Your oncologist being very young is probably even less experienced. Do try to find a medical oncologist whose expertise includes RCC. Google can work so you find someone within a reasonable distance. Florida has Cleveland Clinic branches; perhaps you could get to see someone there. I don’t know if there’s one close enough to you but I think it’d be worth the trip. All the very best to you!

Hd67xlch · April 2016

Footstomper said:
Sutent
Have you had it before? Some people on here have been taking it for years, others found it did ruin their quality of life. You might be one of the lucky ones. There are lots of other drugs out there, perhaps you could try one of those, but first it sounds to me like you need to have a frank and honest talk with yyour doc.

Sutent

Footstomper have never been on it

todd121 · April 2016

Dutch1 said:
When my cancer was
When my cancer was discovered, I was at stage 4. After surgery, I went on an Everolimus test trial. The purpose of the trial is to see whether administering the drug to stage 4 (maybe 3, too) patients would delay recurrence. The trial lasted a year. Six months after the trial ended, my cancer came back.

The Everolimus did have some side effects which I could have done without. That's very true. I went on the trial in spite of the possible side effects simply because I wanted to do what I could to go after the cancer ... regardless of whether or not the strategy was approved. And, maybe the test results will open a new door for future RCC stage 4 patients.

It's now been a total of 3 plus years since surgery.

No one can tell you whether the Sutent will be of benefit to you under your present circumstances. It's the same with "approved" treatments ... no one knows for sure what will have an impact on your cancer. If it was me, I'd give it a try. If the side effects of the Sutent are too much for you, either cut it back or stop taking it. For me, the risk of recurrence was greater than the risks presented by the drug. I haven't regretted being on Everolimus as a preventative strategy.

Best wishes for you.

Dutch

Sutent as Adjuvant Therapy

Dutch,

At the time you (and I also, btw, for the same reasons you did it) went on Everolimus, it was not known if it helped or not. We were part of a clinical trial to find out if it helped. This study still hasn't completed and results are not available. So we still don't know for Everolimus.

However, Sutent has been studied this way and the results have been published. It did NOT help. See the link I posted above to read the results. So, actually, we do know how Sutent behaves as an adjuvant therapy.

To be fair, they have other studies that are looking at adjuvant therapy with Stage 4 patients whose mets have all been removed. There are a couple of studies still taking new patients. But, if it didn't help Stage 1-3 patients, it doesn't seem too likely it would help Stage 4 patients whose mets have been resected. (I chose not to go into this study because it just seems very unlikely to help if it didn't help in the other case.) I don't think there are any studying Sutent. There's one studying Votrient vs Placebo. That was the one my doctor suggested for me.

Regards,

Todd

P.S. Just reminding whoever reads this, I'm not a doctor. This is just my (perhaps uninformed/misinformed) opinion.

todd121 · April 2016

Update Post - Adjuvant Therapy

Hi Frank,

I read your updated post. Sutent is not approved as an adjuvant therapy. The studies published so far do not support using it that way. Your oncologist seems to be shooting from the hip. Can you get another opinion from a more experienced medical oncologist? If you can't find one that specializes in RCC, look for one that studies/treats melanoma. Believe it or not, there's some overlap.

If I'm wrong, would someone please correct me? I don't want to give Frank bad advice.

However, I was in this same boat a year ago. I had a recurrence after 2 years in my adrenal gland. My doc is an RCC researcher (plus I saw another doc, head of oncology at USC Keck School of Medicine, who is an RCC expert and they both agreed). The only treatment they could offer was a drug trial that was for resected Stage 4 patients like me that were comparing Votrient vs Placebo. Neither had any other suggestion except to follow me closely.

BTW, both suggested that for the forseeable future I need to have a chest/abdomen/pelvis CT scan (with contrast if possible) every 3-4 months. Make sure you are getting followed this closely. After a recurrence like this, it pushes us up into the 50-70% likelihood of another recurrence in the next 3 years. You want to catch it early in case it could be resected again or start drugs to slow it down.

Hope this helps Frank.

Regards,

Todd

P.S. Both docs said if I had another recurrence within the next year, even if it was resectable, they wouldn't recommend another surgery. They'd want to put me on drugs. But get another opinion. That's the best thing you can do. Heck, I'd get 2 more if you need a consensus. But try and find medical oncologists with RCC experience. They keep up with the latest research. You can even travel for the consult and still stick with your original doc for treatment, just let them give advice to your other doc about the research/latest findings. They can even work together if the RCC expert is too far away.

Hd67xlch · April 2016

APny said:
I agree with Todd. Do not go

I agree with Todd. Do not go by just the word of the urologist no matter how much you trust and like him. RCC is a unique disease and not many are experienced with it. Your oncologist being very young is probably even less experienced. Do try to find a medical oncologist whose expertise includes RCC. Google can work so you find someone within a reasonable distance. Florida has Cleveland Clinic branches; perhaps you could get to see someone there. I don’t know if there’s one close enough to you but I think it’d be worth the trip. All the very best to you!

updated 1st post in this thread, it is now easier to understand

I cleaned up my 1st post in this thread and added the details, hopefully its clearer than my original phone post.

Thanks Frank

Hd67xlch · April 2016

todd121 said:
Update Post - Adjuvant Therapy
Hi Frank,

I read your updated post. Sutent is not approved as an adjuvant therapy. The studies published so far do not support using it that way. Your oncologist seems to be shooting from the hip. Can you get another opinion from a more experienced medical oncologist? If you can't find one that specializes in RCC, look for one that studies/treats melanoma. Believe it or not, there's some overlap.

If I'm wrong, would someone please correct me? I don't want to give Frank bad advice.

However, I was in this same boat a year ago. I had a recurrence after 2 years in my adrenal gland. My doc is an RCC researcher (plus I saw another doc, head of oncology at USC Keck School of Medicine, who is an RCC expert and they both agreed). The only treatment they could offer was a drug trial that was for resected Stage 4 patients like me that were comparing Votrient vs Placebo. Neither had any other suggestion except to follow me closely.

BTW, both suggested that for the forseeable future I need to have a chest/abdomen/pelvis CT scan (with contrast if possible) every 3-4 months. Make sure you are getting followed this closely. After a recurrence like this, it pushes us up into the 50-70% likelihood of another recurrence in the next 3 years. You want to catch it early in case it could be resected again or start drugs to slow it down.

Hope this helps Frank.

Regards,

Todd

P.S. Both docs said if I had another recurrence within the next year, even if it was resectable, they wouldn't recommend another surgery. They'd want to put me on drugs. But get another opinion. That's the best thing you can do. Heck, I'd get 2 more if you need a consensus. But try and find medical oncologists with RCC experience. They keep up with the latest research. You can even travel for the consult and still stick with your original doc for treatment, just let them give advice to your other doc about the research/latest findings. They can even work together if the RCC expert is too far away.

Thanks Todd, right now being

Thanks Todd, right now being only 6 days out of surgery Im taking a break from Drs till the end of the month, Im going to see my Urologist on the 26th and Im guessing/hoping he will be the one doing follow up scans, his practice has both a ct scanner and pet scanner, plus I ve been seeing the guy for 20+ years and I trust him. I had my yearly scans done at his practice for the last 5 years and they found the lung mets, plus he removed my Kidney in 2011. Im guessing they will want to do another scan in about 90 days, but have no real idea yet.

As far as a Oncologist, Im done with them unless I get another bad scan thats not resectable, then I will take your advice and go to a different one who has more experience with rcc, the guy I saw has only been practicing for 5 years, granted thats not his fault he is young but he needs some more experience I think. If this crap comes back on me again I will probably go to the Moffit Cancer Center in Tampa, my sisters husband has had good results there with his bone cancer.

Thanks again

todd121 · April 2016

Hd67xlch said:
Thanks Todd, right now being
Thanks Todd, right now being only 6 days out of surgery Im taking a break from Drs till the end of the month, Im going to see my Urologist on the 26th and Im guessing/hoping he will be the one doing follow up scans, his practice has both a ct scanner and pet scanner, plus I ve been seeing the guy for 20+ years and I trust him. I had my yearly scans done at his practice for the last 5 years and they found the lung mets, plus he removed my Kidney in 2011. Im guessing they will want to do another scan in about 90 days, but have no real idea yet.

As far as a Oncologist, Im done with them unless I get another bad scan thats not resectable, then I will take your advice and go to a different one who has more experience with rcc, the guy I saw has only been practicing for 5 years, granted thats not his fault he is young but he needs some more experience I think. If this crap comes back on me again I will probably go to the Moffit Cancer Center in Tampa, my sisters husband has had good results there with his bone cancer.

Thanks again

Good Luck

Wishing you the best.

Can't remember, I might have posted this already on this thread, but I saw a young oncologist with no RCC experience, and the advice was not great. However, I've since learned he's plugged into my doc for patients he's treating. He was literally brand new to our area when I saw him and had just graduated from his oncology fellowship. So I should probably give him a break. The only real mistake he made was he was off on his prognosis (his prognosis was more rosey than what studies supported). Still, he planned to follow me closely, so I wouldn't even say he made a mistake. The information was just not the best.

Good luck and I really hope it doesn't come back.

Todd

RCC with lung mets ( updated cleaned up post)

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