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Surgery - Round #2

nyisles's picture
nyisles
Posts: 26
Joined: Mar 2013

Tomorrow I am going through Round #2 of surgery to remove the kidney flakes from my lung.  After they removed the kidney and abdominal wall mass, they told me to recover and then they would start on the lungs.  Recovery has been great so far.  I think I overdid it a few times such as walking 3 hours on the fitness trail and then not being able to sit that night.  Spending late nights out with my friends and not getting much sleep for the past week or two.  My surgery was only on April 5th, but I am trying to live life to the fullest just in case this is the best I am ever going to feel going forward.  I know that is not the way to think, but I just feel like like each day is a special gift to thank God for.

After the kidney and side wall removal the pathology report came back and I talked to my urologist about it.  He said there were no surprises and it does not change our gameplan in trying to get me in the "winners circle" to beat this forever.  I am not a doc, but I did see some good and bad.  The BAD: 5% sacra, grade 4. The GOOD: did NOT penetrate the adrenal gland, reached the last kidney layer but did NOT break through the final wall, confirmed clear cell and it was "non invasive". 

So 2 out of the 4 items are out and the 3rd comes out tomorrow.  I have 2-3 very small spots on the very bottom of my left lung and one "flake of dust" in the right lung.  The lung doc told me that they can easliy remove what is there and it will not affect my lung capacity.  I was told that after both surgeries, my long term lung capacity will be exactly how it is right now.  He said less than 5% will be removed.  The bad news is that he said these things are so small that it may be too difficult to see using Video Assisted surgery and they may have to do an old fashioned Thoractimy (or whatever the word it).  He said the only difference is 1 more day in the hospital (should be in for 1-2 days).  After this, he said to recover for 2-3 weeks then do the other lung.

In the meantime, my urologist said to contact a few oncologist (he gave me 1 of them) for preventative treatments.  Since after all the surgeries there will be no more spots (according to the scans), that he wants me to go on "preventative treatment" in order to make sure this is "cured" or prevents it coming back again.  Bone, brain, and all other organs are clear.  Even though every little pain I get I think the cancer has spread there.  He talked about IL-2 as being the only drug to "cure" right now but he said an oncologist may put me on something else.  Since I am healthy (besides the obvious), young (35), and there will be NED after the 4th surgery, he said they may not want to blast me with IL-2 right now because they may not want to do that to an otherwise healthy body.  They may give me something less to see if that will do the trick. 

I know many of you are on the treatment phase, but has anyone out there been on a treatment as "preventative"?  Meaning that you have NED (after surgery), and were put on meds to extinguish the microbes "floating" out there or taking something to stop it from popping up again?  My urologist said that kidney cancer is an uphill battle, but there is a winners circle and that I have the profile of the people that are in that winners circle.  I really hope he is right about that.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It sounds as if you are in that magic circle.  So far all studies have shown that nothing works to prevent recurrence.  You can improve the odds with a good lifestyle but nothing has so far been shown to be worth taking when you're in that sought-after NED state. 

If you were unlucky enough to get a further visit, then surgery would remain the best option, if it was another single recurrence.  Otherwise it would be time to go onto a systemic treatment (a drug or drugs).  You'll continue being monitored, particularly because of that small sRCC component, so if anything did turn up they'd be on to it right away.  However, with luck 'you've had it' with cancer and won't see it again.

todd121
Posts: 559
Joined: Dec 2012

I had a 6.8cm tumor which was Stage 3a and had my kidney removed December 10th, 2012. My uncle is a retired medical oncologist and he encouraged me to look into "adjuvant therapy" drug trials. Adjuvant therapy is where they give you a drug to delay or prevent cancer from returning. There is nothing approved or proven for RCC to work, but there are for some other cancers. The theory behind adjuvant therapy, is that while surgery removes the majority of the cancerous cells, there are still a very small number of cancerous cells floating around your body in your blood, lymp system, or marrow, etc. that might get established somewhere. Once a tumor is established to the point of being visible, there's a much larger number of cells, and drugs that may be only partially effective kill off all but the resistant cells and you may end up with cancer that is resistant to the treatment. So the hope of adjuvant therapy, is to kill off the small number of cells to make it a much smaller number of cells that hopefully the body's immune system will take care of. They hope to delay the spread of cancer of stop the spread of cancer using these drugs. They usually start with drugs that have been shown to be effective in treating metastatic disease. My uncle and the three oncologists I saw put my risk of recurrence at close to 50% and I wanted to do whatever I could to reduce this chance, if possible.

I saw 2 RCC specialists, Dr. Figlin at Cedars Sinai (one of the top RCC specialists in the US) and Dr. Pal at the City of Hope (a former student of Dr. Figlin's and co-chair of the kidney cancer center at the City of Hope). Dr. Pal recommended that I join the EVEREST study, which is a 50/50 double-blind study giving 10mg of Everolimus (aka afinitor) or placebo a day for 1 year. He thought the side effects of everolimus are milder and more easily tolerated and thought I'd be able to stay on the drug for a year, whereas the other trials had more severe side effects. COH, only offered the EVEREST study. Dr. Figlin had both the EVEREST study available and a Votrient study available. He recommended I take Votrient. He thought that the best data they had showed that Votrient was more likely to be effective. In the end I decided to do the EVEREST study at the City of Hope. I take 2 pills a day and go in for blood work every 6 weeks and scans every 12 weeks. One of the reasons I did what I'm doing is to be more closely followed. I'm getting scans more often than my urologic oncologist wanted to do, and I'm getting to know a really good RCC doctor in case I need one later.

You should see an RCC oncologist near you and see what drug trials are going on to see if anything interests you. Almost all of these studies (these 2 for sure) require you to start treatment within 12 weeks of the nephrectomy, so don't delay seeing an oncologist. Just get the information. If you call for appointments and time is of the essence, tell them. They got me in ASAP.

Keep us informed. We're all hoping you do well.

Todd

KJones1969
Posts: 158
Joined: Mar 2012

You got this Vinny! I hope you got my email earlier today. Cancer may be  an uphill battle but you are well on your way to the "winners circle" my friend. Please let me know how your surgery goes and what preventive treatment you will receive from here on out. Take care and I will be praying for you tomorrow.

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Hope all went well today Ny. A speedy recovery!

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