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OH CRAP!  Part NUMBER 2 - Can I Have Dueling Cancers?

5/20/2017

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Part two of my kidney saga. To view part one CLICK HERE.

​I had my visit with Dr. Thiel of Mayo Jacksonville the head of the Urology Department, and in his words "The Kidney Tumor Must Come Out!"  OH CRAP!  The malignancy risk of Bosniak III cystic lesions is thought to be approximately 50%, however the reported malignancy rates range from 31% to 100%. The good news is that he feels the location of the tumor will allow its removal without much if any effect on my overall kidney function. More good news the National Cancer Institute lists the average life expectancy of kidney cancer at 14 to 15 years, well above the 5.5 years for myeloma.    

Dr. Thiel  said in the old days kidney cancer was seldom if ever found before it had spread to other parts of the body, but with new imaging like CT and MRI, it is often found earlier with a much better prognosis.  They usually find it early by happenstance, without any observable symptoms. How kidney cancer was discovered in the past is because of pain in the  back or side, and/or blood in the urine.  I did not have any of these symptoms, but now have noticed a low grade feeling in my lower left side.  This may just be my mind playing tricks on me, and all myeloma patients can relate to these feelings during their myeloma journey.   

So at this point the plan is to have Robotic Surgery(partial resection of my left kidney) on June 2nd  with a machine called the Da Vinci Robot. To me it looks more like a spider or octopus. Apparently this method provides for a quicker recovery and from what I understand Dr. Thiel is the best there is in the Southeastern USA.  If practice makes perfect Dr. David(Scissorhands) Thiel has performed thousands of surgeries and over 300 with the Da Vinci Robot.  In addition, I asked him about outcomes, and with a hint of humor asked if his patients dropped like flies after Robotic surgery? He said he has not lost anyone. Not a bad batting average!   

I asked if I would have radiation or chemo after the surgery.  It was a surprise to me but he indicated radiation will kill the kidney and there are no drugs which have shown efficacy in the treatment of kidney cancer.  The standard of care is to remove the kidney, a far simpler procedure than a resection, and with most people the remaining kidney will do the work required all by itself. However with people like me who have kidney insufficient from my myeloma, I would be back on dialysis, and that would not be fun. 

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Cancer can be so inconvenient!  We had planned on being in Wisconsin for the summer starting in May, however this has temporarily derailed those plans.  We could have had this done at Mayo Rochester, but the Mayo system seems to operate like three separate hospitals.  I have had all the testing at Mayo and it is on their system, but because I am not a Mayo Rochester patient I can not get an opinion if I can go to Rochester for treatment without a visit first.  Dr. Thiel had said I should use his name when I called his counterpart in Rochester and I assumed it would make this a seamless transition.  It hasn't yet.  I guess I was surprised because of the close interactions of the tightly knit  myeloma specialist community at Mayo, or maybe that is just my misconception.  

​Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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OH CRAP!  Can It Be A Secondary Cancer?

5/10/2017

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I have been a little slow about talking about my recent visit to see Dr. Barlogie for a few reasons. I knew when I left I was SCR(Stringent complete response), no M spike, good light chain numbers, and a clean MRI of my bone marrow.    However, it has taken a lot longer than normal to find out about my MRD(Minimal Residual Disease) status, and if MRD positive what was my Gene Expression Profile (GEP).  I have been waiting and they say the delay in the GEP is because they can not find enough myeloma cells to run the test.   Now that is just outstanding.  The OH CRAP part comes in because when I got home and looked at my MRI output which had just been released, it had stated the following:

IIMPRESSION(3/17 MRI)
1. Complex left lower renal pole 1.9 cm cystic lesion. Further 
evaluation with dedicated MRI abdomen with and without IV contrast 
recommended.
2. Osseous structures are described in a separate report

I asked Dr. Barlogie if this was a problem, then wouldn't it have shown up as active in the prior year's PET scan.  He looked into it and found that it was in his words HOT in the 3/16 PET scan.  As with the MRI, the PET scan was not finalized by the time I left Mt. Sinai but was finalized after I had returned home.  I nor Dr. Barlogie made note of the following impression.

IMPRESSION(3/16 PET)
1. No hypermetabolic lytic lesion is identified to suggest active
multiple myeloma.
 
2. Mildly hypermetabolic ovoid lesion at the left lower pole should be
evaluated with dedicated multiphasic MR imaging with contrast.

After a few emails with Dr. Barlogie he  recommended I get an ultrasound and later a MRI to determine if this is renal carcinoma.  The results of these studies resulted in the following diagnosis.


I have a Bosniak III cyst (2.0 cm) in the inferior pole of the left kidney, and have an appointment with a Mayo surgeon, Dr. Klein at Mayo Jax on 5/17.  So OH CRAP, I may have dueling cancers!  You are your own best advocate and need to make sure you get copies of all your reports and read the summary.  If I hadn't, I may have been  waiting another year before this kidney issue was identified.   Hopefully we have found it in the early stages and it can be removed without removing one of my kidneys, which are already marginal from the original myeloma.  One thing for sure is I do not want to go back on dialysis. 

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


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Myeloma Life Expectancy Has Increased From 5 Years To 5 Years and 6 Months

5/3/2017

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Each year in mid April, the National Cancer Institute updates the SEER data which shows if any progress has been made in survival for all cancers.  In the 11 years since I was diagnosed, the life expectancy has increased from 3 years to now this year myeloma survival is 5 years and 6 months.  You can see the SEER results if you CLICK HERE!  The 5 year survival from the graph is 52.7% or 2.7% above the average.   History shows that 5.3% of patients die between year 5 and year 6, which if we extrapolate 2.7% is a little over half of the yearly total or translates into an estimated survival of 5 years and 6 months for myeloma.  This is a 10% improvement  over the prior year results.   

This information, does not include the improvements we will see with the newer drugs which have been approved like Daratumumab, Elotuzumab, and Ninlaro. 

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: 
https://twitter.com/grpetersen1

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    Author

    Gary R. Petersen
    [email protected]
    CLICK HERE for my myeloma journey

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