3rd time - Stage 4 in 2007

khmama27

Hi all,

I am new to this forum.  I was on another forum off and on since 2007 but I can't find it anymore and am so glad to find this one! 

Short version of my story:

June 2007 - 15.5cm RCC RIGHT kidney. / 1.5cm mets to right lung. Age 49.  Both resected (radical nephrectomy) at Lankenau Hospital in suburban Philadelphia.  Took Sutent 37.5mg for 8 rounds as adjuvent therapy through Keith Flarrity at Univ of Penn Hospital in Phila.  He has since moved to Boston and I have seen Naomi Haas at Penn ever since.

Summer 2011 - tiny lung spots started appearing (1.5-2mm each).  Oncology and family doc both want to watch and wait... repeated scan since then show them slowly growing each tie but still very small (about 5mm) Way too big for MY LIKING.

March 2012 -Open Partial Nephrectomy for 2.4cm RCC in LEFT kidney, first seen on November 2011 scans but watched for 3 months to be sure it was growing / a true risk before cutting into my only kidney.  Surgery was at Fox Chase Cancer Center by Robert Uzzo - at Dr Haas' recommendation.

NOW - January 2014 - new scans show:

- lung spots as mentioned above are now 6 in number and about 5mm each

- NEW (2nd time in my only remaining 90% of a kidney) 8mm assumed RCC.  Dr Haas seems to think surgery is no longer wise since I will continue to form tumors in that kidney (apparently) and they can't chop it up too many times.

- NEW 1.5cm PANCREATIC mass - Radiology is saying it's "Islet Cell" which I looked up - can be benign or malignant.

----------------

Dr Haas is doing some investigating with her collegues but preliminary thought was votrient - she is running a trial. I could also get votrient without the trial.  I am unsure if her being the principle on this study slants her recommendations...  :-(   Why not surgery for the pancreatic mass? 

They also think now I might have the vHL trait. I thought I was tested as negative back in 2007, but maybe I imagined that. Sickened by that possibilty for my two daughters sakes.

Feeling like I just received a death sentence.  Any recommendations or encouragement appreciated.

Thanks much

Karen

Jojo61

Welcome aboard, Karen. I am

Welcome aboard, Karen. I am glad you found us! This is a great forum for informatiom and support. Smart Patients is also a great site for information. You sound like you've faced a lot of battles. My experience so far has been simple and straightforward. So I cannot offer much advice but I can offer you support. We have some members who have lots of experience and knowledge and I know they will speak up soon to help you out.

Take care of yourself. You are in my thoughts and prayers....don't hesitate to reach out here anytime!

Hugs,

Jojo 

NanoSecond

Some thoughts

Karen,

Very sorry to hear about your latest developments.

I have a few suggestions.

1) Please register at www.SmartPatients.com and restate your history and questions about possible treatments there.

2) Consider contacting the NIH (National Institutes of Health) in Bethesda, MD.  Since you have developed tumors in both kidneys it seems very likely that (as you suspect) your RCC is a hereditary version.  If so, the NIH may be very interested in hearing from you.  At the very least I would ask them to give you a second opinion on exactly what type of renal cancer you are fighting.  Knowing this is extremely vital and I would not recommend just going on what your previous or existing doctors have diagnosed up to now.

3) The top doctor/researcher at the NIH/NCI in mRCC is Dr. W. Marston Linehan.  Pay close attention to what he has to say about ALL versions of renal cancer as being almost perfect examples of cancer as a metabolic disease:

http://videocast.nih.gov/summary.asp?Live=13352&sf19869195=1&bhcp=1

Hang in there,

 

-N

 

 

khmama27

NanoSecond said:

Some thoughts

Karen,

Very sorry to hear about your latest developments.

I have a few suggestions.

1) Please register at www.SmartPatients.com and restate your history and questions about possible treatments there.

2) Consider contacting the NIH (National Institutes of Health) in Bethesda, MD.  Since you have developed tumors in both kidneys it seems very likely that (as you suspect) your RCC is a hereditary version.  If so, the NIH may be very interested in hearing from you.  At the very least I would ask them to give you a second opinion on exactly what type of renal cancer you are fighting.  Knowing this is extremely vital and I would not recommend just going on what your previous or existing doctors have diagnosed up to now.

3) The top doctor/researcher at the NIH/NCI in mRCC is Dr. W. Marston Linehan.  Pay close attention to what he has to say about ALL versions of renal cancer as being almost perfect examples of cancer as a metabolic disease:

http://videocast.nih.gov/summary.asp?Live=13352&sf19869195=1&bhcp=1

Hang in there,

 

-N

 

 

Thank you both. 
I missed a

Thank you both. 

I missed a few letters initially when typing and it sounded like I only had ONE lung scan.  But I have had numerous scans - ranging from 3-6-9 months between scans at arious times in this journey.  I am allergic to CT contrast so I get regular CTs of chest without contrast and MRIs of the abdomen and pelvis with and without MRI contrast.

I will look at NIH / Dr Linehan.  I have a friend who has been treated at NIH for his stage 4 Melanoma.

KevinGolfer

Not Alone

Karen,

 

I just wanted to say you are not alone.

 

I was diagnosed in 2007 with RCC and had a cryoablation preformed on my right kidney in 2008. 

As a result of the CT Scans I had done, I read on my radiology reports that I had a mass on my spleen. I asked for a referral to a General Surgeon and ended up having and EUS with FNA done. While the mass on my spleen was benign, an islet cell tumor was found on the tail of my pancreas. A few months later I had a distal pancreatectomy with spleenectomy to resect the tumor. Tumors that are located on the head or body have an opeation called the whipple which is a much tougher operation. I ended up being insulin dependent after my operation which was a 50/50 chance.

I am now watching a mass on my left kidney that was a noted as "probably a complex cyst" at a size of 1.4 cm in 2008. Today, it is 3cm and is an enhancing complex cyst and rated Bosniak Type IIF. I've had multiple opinions regarding how to proceed but have decided that surveillence is ok for me at this point.

I tested negative for the VHL defect.

Islet cell is considered benign if it hasn't metastasized. Mine had not metasized and current scans of my pancreas and liver show no evidence of disease. My tumor was only 1cm.

Islet cell tumors grow very slowly. My neighbor had a whipple for his islet cell tumor and he had mets to his liver. He had to have surgery because his bile ducts became blocked. The mets were like 2cm and 3cm but have only grown .3mm once in 10 years. 

I wish you the best of outcomes for the decisions you must make in the near future.

 

Best Regards,

 

Kevin

 

 

 

NewDay

KevinGolfer said:

Not Alone

Karen,

 

I just wanted to say you are not alone.

 

I was diagnosed in 2007 with RCC and had a cryoablation preformed on my right kidney in 2008. 

As a result of the CT Scans I had done, I read on my radiology reports that I had a mass on my spleen. I asked for a referral to a General Surgeon and ended up having and EUS with FNA done. While the mass on my spleen was benign, an islet cell tumor was found on the tail of my pancreas. A few months later I had a distal pancreatectomy with spleenectomy to resect the tumor. Tumors that are located on the head or body have an opeation called the whipple which is a much tougher operation. I ended up being insulin dependent after my operation which was a 50/50 chance.

I am now watching a mass on my left kidney that was a noted as "probably a complex cyst" at a size of 1.4 cm in 2008. Today, it is 3cm and is an enhancing complex cyst and rated Bosniak Type IIF. I've had multiple opinions regarding how to proceed but have decided that surveillence is ok for me at this point.

I tested negative for the VHL defect.

Islet cell is considered benign if it hasn't metastasized. Mine had not metasized and current scans of my pancreas and liver show no evidence of disease. My tumor was only 1cm.

Islet cell tumors grow very slowly. My neighbor had a whipple for his islet cell tumor and he had mets to his liver. He had to have surgery because his bile ducts became blocked. The mets were like 2cm and 3cm but have only grown .3mm once in 10 years. 

I wish you the best of outcomes for the decisions you must make in the near future.

 

Best Regards,

 

Kevin

 

 

 

NIH

Hi Karen,

Welcome to the group that none of us wanted to join.  This is a great place for support.  I agree with the advice to join SmartPatients.  This is a great group and you will get some valuable information here but there is lot of expert information there.  I also agree that you should contact NIH.  I have seen Dr.  Linehan.  They are experts in hereditary forms of RCC and yours sure seems likely to be.  I had scans, a consultation, and genetic tesitng free.  Content removed by site administrator. 

Kathy

foxhd

NewDay said:

NIH

Hi Karen,

Welcome to the group that none of us wanted to join.  This is a great place for support.  I agree with the advice to join SmartPatients.  This is a great group and you will get some valuable information here but there is lot of expert information there.  I also agree that you should contact NIH.  I have seen Dr.  Linehan.  They are experts in hereditary forms of RCC and yours sure seems likely to be.  I had scans, a consultation, and genetic tesitng free.  Content removed by site administrator. 

Kathy

Karen and Kevin

Wow. And people think I've been through a lot. You are showing the attiude and toughness which I have been pushing for people to have. I'll tell you that I have had similar awareness of my mortality and think that you are looking at your options carefully. That is how you survive.

I agree. Join smart patients also. I think they are more clinical than this site. This site is best for commroderrie and support. It's a good place to not feel alone. That doesn't mean to leave this site because there isn't clinical information here. Lots of smart people. But medically, you look like you are in good care. It is stressful. I think trust is a big factor. Be sure to agree with your plan of care. Then keep plugging forward like you have always done. That is why you do well despite the odds.

CommuterMom

Hi Karen,
I'm new here I grew

Hi Karen,

I'm new here I grew up in the Mainline Im 48 and I know Lankenau and I don't know if its the best cancer hospital. I saw Dr. Coleman today at Memorial Sloan Kettering and he really is top knotch. He did surgery on my father and he is doing mine on 2/13. It's not too far from Philly and he specializes inheritied disease of the kidney. Look him up!

 

 

khmama27

CommuterMom said:

Hi Karen,
I'm new here I grew

Hi Karen,

I'm new here I grew up in the Mainline Im 48 and I know Lankenau and I don't know if its the best cancer hospital. I saw Dr. Coleman today at Memorial Sloan Kettering and he really is top knotch. He did surgery on my father and he is doing mine on 2/13. It's not too far from Philly and he specializes inheritied disease of the kidney. Look him up!

 

 

Thank you everyone
Kevin - We

Thank you everyone

Kevin - We do have lots of similarities. Thank you for the helpful info. Really encouraging, actually.  (I have even had a cystlike something on my spleen in every scan for at least 5 years that never changes. hmm..)

Kathy - Yes, you are right.  I ended up at Lankenau for my first surgery which was an emergency for bleeding from my kidney. I was well taken care of and felt I had an excellent surgeon there.  My family doc did a lot of fast research to see if I would be safer elsewhere and felt I was in good hands with Robert Schnall.  But, for my follow-ups and oncology I headed to Penn after also getting opinions at Fox Chase, and for my Partial Nephrectomy, my Lankenau Surgeon and my Penn oncologist both sent me to Robert Uzzo at Fox Chase.  I have considered Sloan.  One of my best friend's husband just donated T cells to his sister there last week - they are top notch! I wish you the ery best with your upcoming surgery.

Karen

I am alive

Another Mainliner here

Hi Karen. I, too, live on the Mainline. I had my nephrectomy at the Hospital of the Uiv. Of Penn (Dr. Van Arsdalen), consulted with the great  Dr. Flaherty when metastases appeared, ended up going to Memorial Sloan Kettering for surgery & followup, and use Fox Chase as a local backup in case of emergency (Dr. Eliz Plimack). I have heard good things about Dr. Haas at Penn. At Sloan Kettering I see Dr. Robert Motzer. I think you've been given good advice here. Definitely check out smartpatients.com and reach out  to the NIH, both for hereditary research and information, and for a second opinion. I would also contact Memorial Sloan Kettering in NYC for a third opinion. By casting the net wider you'll get a firmer footing about what to do next. Yours is a complicated, highly unusual case. You want to deal with doctors who are well versed in cases like yours. As for dealing with the distance involved in getting to these other cancer centers, you end up finding a way. I'm currently in aclinical trial at Sloan and travel there every two weeks - yay Bolt Bus! And Im proud to report that I now know my way around the NYC subway system. Tomorrow, in fact, I will be braving sub-zero wind chill to get my infusion. Here's hoping I catch a cab along the way. We do what we must.  I wish you well, Karen. If you ever want to meet, message me here. We can grab a cup of coffee somewhere along Lancaster Ave.

khmama27

I am alive said:

Another Mainliner here

Hi Karen. I, too, live on the Mainline. I had my nephrectomy at the Hospital of the Uiv. Of Penn (Dr. Van Arsdalen), consulted with the great  Dr. Flaherty when metastases appeared, ended up going to Memorial Sloan Kettering for surgery & followup, and use Fox Chase as a local backup in case of emergency (Dr. Eliz Plimack). I have heard good things about Dr. Haas at Penn. At Sloan Kettering I see Dr. Robert Motzer. I think you've been given good advice here. Definitely check out smartpatients.com and reach out  to the NIH, both for hereditary research and information, and for a second opinion. I would also contact Memorial Sloan Kettering in NYC for a third opinion. By casting the net wider you'll get a firmer footing about what to do next. Yours is a complicated, highly unusual case. You want to deal with doctors who are well versed in cases like yours. As for dealing with the distance involved in getting to these other cancer centers, you end up finding a way. I'm currently in aclinical trial at Sloan and travel there every two weeks - yay Bolt Bus! And Im proud to report that I now know my way around the NYC subway system. Tomorrow, in fact, I will be braving sub-zero wind chill to get my infusion. Here's hoping I catch a cab along the way. We do what we must.  I wish you well, Karen. If you ever want to meet, message me here. We can grab a cup of coffee somewhere along Lancaster Ave.

Hi, I am alive / Mainliner!

Thank you for your story.  I helps SO MUCH not to be alone.  I would love to meet for coffee sometime.  Now, if only I can figure out how to private message on this board!

I asked my family doc today about NIH and talked to my friend who was treated there for his Stage 4 Melanoma (he is now also followed at Fox Chase but they communicate regularly with NIH on his behalf too).  Anyway. i am going to look into Sloan next.  Forget if I mentioned above that another friend's husband just donated T cells for his sister last week through Sloan and they are very pleased with everything they have had done there.  They actually learned after three lousy trips on the MegaBus, and an expensive trip on the train, that they can take the Septa Regional to Trenton and then NJ Transit to Penn Station, for less, and it's more pleasant.   Just in case you hadn't heard that idea.... 

Dr Haas called today.  She talked to Penn radiology again and looked at the films.  This more experienced person felt confident that the pancreatic mass is not Islet Cell, not a new type of cancer, not benign, but is an RCC mets.  The reasoning being that I have other apparent mets.  And they found a subtle showing of it on the scan from 6 months ago, so it is a little slower growing than first feared.  Goodie goodie. 

Dr Haas is going to talk with Dr Uzzo from Fox Chase, who did my second surgery, at a conference in San Francisco on Thursday, about any options for biopsies or removal of either the kidney or pancreatic lesions.  For now, Penn is saying both are too small to remove (kidney) or biopsy (pancreas) and even are too small to follow well to watch response to targeted therapy drugs.  Would I like to wait 8 weeks and rescan to have larger masses and growth baselines?  NO I WOULD NOT LIKE TO WAIT EIGHT WEEKS, NO THANK YOU....

dancnbear1

karen:
If you are looking for

karen:

If you are looking for a local Philadelphia Oncologist I would recommend Dr. Kevin Kelly at Thomas Jefferson. I was referred to him and during our visit he suggested and took it upon himself to call around to John Hopkins, U Penn, Fox Chase, and Sloan Kettering to find the right program for me. My history with RCC started in 2008 with the diagnosis and then the removal of my left kidney. Recently diagnosed with Advanced Stage 4 RCC with growth in Thyroid, Chest, and R Lung. He found a Clinical Trial that is right for me and he may be able to help you or at least offer a potential different opinion based on his experienced. My personal opinion is that a 2nd or even 3rd opinion can be helpful and may point you in a direction that you never thought of. It did for me.

Good luck, hang in there.

 

DB