Am I the only one...

I was diagnosed quite by accident.  I started a new job in 6/12 and over the next few months lost weight (50 lbs by the time of surgery 1/25/13), developed severe anemia (blood transfusion just before Christmas), and was very fatigued.  After a colonoscopy revealed no source for bleeding, I had a CT scan the week before Christmas and a biopsy on New Year's Eve.  I had my surgery a month later (soonest they could do it).  My tumor was 9cm so was a pretty good size when removed.  Both the urologist and oncologist felt it was best to remove it since it was really making me feel bad, and I agree that was best.  I have had a few bumps in the road post surgery, and started Votrient about 2 months ago for mets to sacrum and clavicle even though a bone scan pre-op showed no tumors.  If you are concerned with not having your tumor removed I would speak to your oncologist and a urologist.

BLKJAK said:

Some more info

Thanks for the replies folks. I was assigned a team of oncologists at the Carbone Cancer Center at UW Madison. They felt that they would rather start me on Votrient immediately to try and shrink the tumors and whatnot rather than waiting for the surgery and recovery time (estimated at 8 weeks total) and then start treatment. My tumor is 2cm and there is a spot on my liver and lung. The consensus was to use the drugs and see if things improve first. They can always go back and do the surgery if needed. I just feel like I'm the only one to not have surgery first. I'm OK with their strategy. Who knows how long I have had this in me. It could have been in there for years already and was just found when they looked for potential kidney stones. I trust their judgement and they have done great things for others.

BLKJAK,  your situation is unusual and so it calls for intelligent thinking through. 

Like you, I buy fully into the logic of your docs' plan.  Aside from what you've already explained, there are further justifications.  It's extraordinary if you have mets to your liver and/or lung from such a tiny primary.  Of course, that appraisal might prove to be erroneous but, assuming it's a correct analysis, then there's little benefit in removing the primary first in order to reduce the total tumor burden. The burden on your immune system from that small tumor won't be enough to favour metastases to any real extent.

In addition, some researchers believe that removing a (usually much larger) primary tumor, when there are existing mets can raise problems.  There seem to be signals from the primary that inhibit the flourishing of mets.  so once the primary is removed that restraint is lifted and the mets tend to thrive more.

You seem to be in very good hands and receiving excellent care.  It will be intriguing to see how well the Votrient acts in reducing everything.

BLKJAK said:

Thank-you Texas_wedge

Your comments make me feel even more comfortable with what the oncologists have decided to do. I was fine when they laid out their plan, but coming on here makes me question things more. That's a good thing, as knowledge is power. I don't quite understand some of the things discussed here, but I'm trying. I should be having my first set of scans since starting treatment next month sometime. July would be my third month of taking Votrient.

As an interesting side story, I had impromptu blood work done today. My wife came into my home office yesterday with tears in her eyes. She asked if I could be at the cancer center at 9:00am this morning. Immediately my heart sank and I dreaded the reasoning why I had to be there. She told me that she's worried about me because I look pale and have no energy. She feared I was anemic or something else. I reminded here that I did more in the past week than I have in weeks and that perhaps I look pale because my once dark brown hair is now snow white. Well, I had my blood drawn and we waited for the test results. The nurse came out and asked me if I am feeling OK. I said I was feeling pretty good. She said "That's good because we don't see anything wrong with the blood work. In fact it's better that it was on your last visit." Boy were we relieved! I knew I was fine but I am also glad my wife is looking out for me. We just celebrated 19 years together on 6/11 and I am hoping for several decades more together.

I read on another post the meaning of Texas_wedge. If I were to use a similar moniker, it would have to be Foot_wedge.

The 'official'  designation of your wedge is 'the leather wedge' ! 

Galrim said:

I tend to differ Texas

The approach you mention is today considered more or less old school. Currently the policy on this is not an "if to do" but a "when to do". Especially when the primary is small.

There is tons of articles about that subject. Quoting from just one of them:

The Role of Nephrectomy in Advanced Disease

Nephrectomy has become an integral part of the management of patients with metastatic kidney cancer. In the past, nephrectomy was performed in this setting only in certain circumstances – mostly to relieve pain or as a response to intractable bleeding. But indications that some patients had spontaneous regression of their metastatic disease following nephrectomy, and the fact that the primary tumor rarely, if ever, responded to systemic therapy, prompted more widespread integration of nephrectomy into the management of patients with metastatic disease.

Performing nephrectomy in patients with advanced kidney cancer is not without risk, however. The very real chance of significant metastatic disease progression during the postoperative period or complication before or during surgery that may prolong postoperative recovery could potentially delay or prevent the administration of systemic therapy in the postoperative period. Patient selection for surgery remains critical for success. Patients should be good candidates for surgery, and have a relatively small tumor that can be impacted significantly by surgery. Patients with complicating factors, including extensive metastases to the liver, brain, or bones, may not be good candidates for surgery because of their poor overall prognosis.

(http://www.kidneycancer.org/knowledge/learn/surgical-treatment/) 

/G

G, we're generally in accord on this and related topics, but here we'll have to agree to differ. 

I think you got it right first time - in your "Tough call" post but have now gone astray.  I believe the view I was voicing is the latest thinking.  The write-up you quoted from the excellent KCA summary is a historic look and is a comment of a fairly general nature.  In any case, I don't see any real conflict between what I said and the passage you quoted.

The role of neoadjuvant therapy (as opposed to adjuvant therapy) has been transformed by the targeted therapies, as is testified to by numerous studies.  Moreover, the smaller the primary, the stronger is the case - see, for instance, "Tumor Size Is a Potential Predictor of Response to Tyrosine Kinase Inhibitors in Renal Cell Cancer" at

http://www.goldjournal.net/article/S0090-4295(10)02093-5/abstract

where we read

Results

A linear, moderate to strong association between the initial tumor size and tumor size reduction rate was shown (correlation coefficient −0.441, P < .001). When these tumors were divided into 2 groups at the threshold value (23.95 mm), which was decided by the receiver operating characteristic curve analysis, the smaller tumors demonstrated a significantly greater size reduction than the larger tumors according to the Mann-Whitney U test (P < .001).

Earlier treatments showed no effect at all on primary tumors but now the targeted therapies are found to reduce both the mets and, to some extent, the primary also (often to a sufficient extent to enable otherwise non-feasible surgical interventions) and, as the above shows, the reduction is better in the smaller tumors.

The team involved are much more knowledgeable than you and I and I find their thinking entirely reasonable.  By the way, we should note that they are not precluding surgery, merely deferring the decision on it and for very good reasons.

Galrim said:

You miss my point

Which is that at one point or another nephrectomy will enter the picture except in very rare cases. The developments in systemic treatments has simply changed the path to that point.

/G

G, I can't see why you think I missed your point.  No-one is disputing that nephrectomy will probably be recommended later on - that's what BLKJAK's docs seem to envisage.  It's simply a matter of optimising the sequence of events and I merely added some thoughts from current thinking to support the logic they presented to him. 

(Our only point of difference seems to be as to what constitutes the latest views on the matter.  The latest treatments have dramatically altered the picture and expanded the options for the feasible order of treatments, surgical and systemic.)

Texas_wedge said:

Differences of opinion

I'd like to think that there's not the remotest likelihood of G and myself falling out.  I regard his joining this forum as a major plus for us all.  He has a powerful and enquiring mind, like Neil's and we all like trying to analyse, investigate and test the logic of trains of thought.   I guess we're all academically oriented, in addition to having more than a certain amount at stake personally in all of this. 

My last posting, above, was in the belief that you'd find it helpful to know that your doc's thinking and recommendations for your treatment seem to be very much in tune with the latest research findings.  We'll all be interested in your Wife's record of his clarification and, it goes without saying, that we all hope your treatment proves to be the best possible course of action for you and your Family.

You silver tongued devil

I was just recently diagnosed w stage 4 rcc and at this point my tumor is too large to remove. I thought I was the only person but just met someone else as well. I'm a 30 year old female so at this point I was feeling pretty alone but I'm also happy w my treatment plan so far. I've been taking votrient for about 3 weeks and I'm hoping it is working!! My doctors hope is to eventually remove the tumor if everything shrinks to a safe size to operate. 

Good luck to you!

meagan 

BLKJAK said:

Hi Meagan!

It seems we are pretty unique in our treatment paths. It makes it a little harder to relate to some of the posts when most of the people have had a nephrectomy. I only have a small 2cm tumor, so that is a bit of a difference. How are you doing with the Votrient? I have some tumor pain, white hair and randomly lose my sense of taste. I'm 41 so I wasn't ready for white hair. I'm happy with my treatment plan as well. I'm hoping to beat kidney cancer. There are a bunch of new drugs coming out with one perhaps being a cure. I'd perhaps even settle for it being treated as a "chronic disease". 

Hope you are doing well and kicking kidney cancer's arse!

I agree with the drs. plan of care. For the exact reason Tex gives. With the primary removed, the mets flourish.  So suppress the mets if possible with an antiangiogenic. If effective, you will know that your cancer is treatable. And know in a short time.  Then remove the primary. It saves surgery and recovery time, and at a lower cost.

This may not apply to everybody. But it does in this case. I also think that this wasn't a treatment option just a year or so ago. The anti pd1 options and combination trials are affording more time. Votrient and sutent and others are becoming more effective. If she was in pain or her immediate health was in danger, then there is no  question, perform surgery first.

And now I see Meagan has a similar plan. I like it.

BLKJAK said:

Thank-you Texas_wedge

Your comments make me feel even more comfortable with what the oncologists have decided to do. I was fine when they laid out their plan, but coming on here makes me question things more. That's a good thing, as knowledge is power. I don't quite understand some of the things discussed here, but I'm trying. I should be having my first set of scans since starting treatment next month sometime. July would be my third month of taking Votrient.

As an interesting side story, I had impromptu blood work done today. My wife came into my home office yesterday with tears in her eyes. She asked if I could be at the cancer center at 9:00am this morning. Immediately my heart sank and I dreaded the reasoning why I had to be there. She told me that she's worried about me because I look pale and have no energy. She feared I was anemic or something else. I reminded here that I did more in the past week than I have in weeks and that perhaps I look pale because my once dark brown hair is now snow white. Well, I had my blood drawn and we waited for the test results. The nurse came out and asked me if I am feeling OK. I said I was feeling pretty good. She said "That's good because we don't see anything wrong with the blood work. In fact it's better that it was on your last visit." Boy were we relieved! I knew I was fine but I am also glad my wife is looking out for me. We just celebrated 19 years together on 6/11 and I am hoping for several decades more together.

I read on another post the meaning of Texas_wedge. If I were to use a similar moniker, it would have to be Foot_wedge.

Hello Blkjak!  Votrient will make you pale and tired! I stopped the Votrient for a dentist appointment a few months ago and my complexion began to flourish after a few days.  I was more energetic than I had been in  years.  I stayed in the sun a couple of days after I stopped, and now my complexion has remained even.