SCCA/UWMC (Seattle) Kidney Cancer Specialists

agu

I am recently diagnosed with Stage 3 Kidney Cancer. I have been referred to specialists at Seattle Cancer Care Alliance/ University of Washington Medical Center. I am wondering anyone on the forum have been treated at SCCA/UWMC. I am just looking for some feedback on specialists used, things to watch out for, impressions etc.

Thanks.

donna_lee

Seattle has great facilities

I was treated at OHSU in Portland, but have read a lot about the programs in Seattle.  Since we haven't heard what the Docs are planning for you, yet, I won't jump in with much advice.  But Stage 3 seems to mean your tumor is under 7 cm. and is confined to the kidney.  I'm assuming surgery is in the cards, so I'll wish you well on that venture.

Lot's of questions you may have can be answered by typing the query or name/test/etc. into a search engine.  ACS and other sites will help you get the definition.

Udub (I think that's who)  has an excellent after care and survivor program, no matter where you receive treatment.

Don't hesitate to ask specific questions--you'll receive lots of opinions and answers.

Donna

sblairc

Stage 3 clarification

 

Have you had your surgery yet or is it just a staging based on a CT scan? That might help me think of additional input for you. 

 

Actually, just to clarify, Stage 3 is not actually confined to the kidney so to speak. It will have extended in some way beyond the kidney proper but within the Gerotas fascia. 

 Stage 3 has some sort of extension beyond the kidney proper (e.g. into the perinephretic fat, renal sinus/vein invasion, etc. 

I find this to be a good reference. 

http://www.cancer.org/cancer/kidneycancer/detailedguide/kidney-cancer-adult-staging

Yeric

scca/u dub

I love those places.  Started going there in 2004.  Although kinda stopped, my medical team in Alaska contacts them on a regular basis.  I have recieved a lot of time from Seattle.  I try hard to do good things with that time. 

The social workers at scca are fantastic.  Do not be afraid to touch base with them.

I have stayed in the Pete Gross house and the scca house.  The one shuttle driver, Eddie has a wealth of friendly information.

We also stay at The Hotel Nexas,  If scheduled to see a doctor they give a discount.  Their shuttle bus is one of the best among hotels.  They even started going to the zoo. 

My main Dr. was Dr. Thompson.  There is a newer Dr. giving him some help.  I also glow over Dr. Jason Rockhill.  He has treated my junk in the brain with all types of radiation. 

The infusion nurses are all professional, all the time. 

I can be specific if required.  Keep in touch.

Bobby

agu

donna_lee said:

Seattle has great facilities

I was treated at OHSU in Portland, but have read a lot about the programs in Seattle.  Since we haven't heard what the Docs are planning for you, yet, I won't jump in with much advice.  But Stage 3 seems to mean your tumor is under 7 cm. and is confined to the kidney.  I'm assuming surgery is in the cards, so I'll wish you well on that venture.

Lot's of questions you may have can be answered by typing the query or name/test/etc. into a search engine.  ACS and other sites will help you get the definition.

Udub (I think that's who)  has an excellent after care and survivor program, no matter where you receive treatment.

Don't hesitate to ask specific questions--you'll receive lots of opinions and answers.

Donna

Stage 3 after CT scan before surgery

The Stage 2b/3a diagnosis is by surgeon after reviewing the CT scan. The tumor is about 10 cm x 7 cm  x 7 cm. He has recommended radical, scheduled for later next month. He doesn't believe it has spread outside kidney though CT shows tumor covering more than 90% of kidney. This has been my main concern. The chest X-ray and blood test came back negative. I had no symptoms related to kidney cancer. It was disovered accidently when my primary care doctor sent me for CT while investigating abdominal pain for potential appendix issue. I don't think we will know more until surgery is performed and pathology tests are performed.

I have been reading quite a bit about kidney cancer online. I also read the research papers published by my specialist. Both I and my PCP feel comfortable with the background and experience of the surgeon. My only concern was that he appeared to be rushing during the meeting and didn't appear proactive. As I had already read up enough, it was always me asking what about this and that before he will say lets do this to rule out or he doesn't think so and so ... But my communications with him after the appointmnt have been good. When I asked him for second opinion, he gave me name for another surgeon at another hospital.

agu

Yeric said:

scca/u dub

I love those places.  Started going there in 2004.  Although kinda stopped, my medical team in Alaska contacts them on a regular basis.  I have recieved a lot of time from Seattle.  I try hard to do good things with that time. 

The social workers at scca are fantastic.  Do not be afraid to touch base with them.

I have stayed in the Pete Gross house and the scca house.  The one shuttle driver, Eddie has a wealth of friendly information.

We also stay at The Hotel Nexas,  If scheduled to see a doctor they give a discount.  Their shuttle bus is one of the best among hotels.  They even started going to the zoo. 

My main Dr. was Dr. Thompson.  There is a newer Dr. giving him some help.  I also glow over Dr. Jason Rockhill.  He has treated my junk in the brain with all types of radiation. 

The infusion nurses are all professional, all the time. 

I can be specific if required.  Keep in touch.

Bobby

Bobby,
Thanks for the

Bobby,

Thanks for the feedback and suggestions on SCCA/UWMC. I live very close to UWMC so it is fairly convenient. Do you remember the newer doctor's name?

When typically do we find out the treatment that may be required after surgery? Right now, I am just waiting for date of radical surgery for removing kidney to come. There is no other appointment with specialist or anyone else before the surgery.

sblairc

agu said:

Bobby,
Thanks for the

Bobby,

Thanks for the feedback and suggestions on SCCA/UWMC. I live very close to UWMC so it is fairly convenient. Do you remember the newer doctor's name?

When typically do we find out the treatment that may be required after surgery? Right now, I am just waiting for date of radical surgery for removing kidney to come. There is no other appointment with specialist or anyone else before the surgery.

Post surgery, with T3a

My husband was T3a. He is 2 years cancer free and counting. His tumor was smaller on the pathology report than the CT scan do that report post surgery will give you a lot of additional information such as sub type. 

Currently there is no adjuvant therapy ("after treatment") given to seek out and  destroy the potentially remaning cancer cells in the blood stream. Some cancerss have other type of post cancer therapies like hormonal therapies like you sometimes hear of for breast cancer but kidney cancer does not. This was really confusing for me at first, but it's just the way it is. Several studies investigate drugs in clinical trials to see if they prevent recurrenece, but we opted not to bother since prevaiiling data showed that they just don't work. 

Additional diagnostic tests are often done to rule out spread. Chest  CT scan is often done to rule out any potential spread of the cancer to your lungs. Some doctors may do a bone scan to rule out spread to the bones (ours did) although whether or not they are necessary given certian stages of tumors and absence of any pain is debatable. I was glad our surgeon did one. It gave us peace of mind. 

 

So you should just have your surgery and go on living!!! That's the beauty of having 2 kidneys. You can have your organ filled with cancer and just have it removed. That blows my mind. 

Yeric

agu said:

Bobby,
Thanks for the

Bobby,

Thanks for the feedback and suggestions on SCCA/UWMC. I live very close to UWMC so it is fairly convenient. Do you remember the newer doctor's name?

When typically do we find out the treatment that may be required after surgery? Right now, I am just waiting for date of radical surgery for removing kidney to come. There is no other appointment with specialist or anyone else before the surgery.

Other stuff

Scott Tykodi.  I have never met the man.  However he is the doctor coaching my oncoligist currently. 

Dr. Bhatia,  This is the guy that handled me though the clinical trial I was invited to in 2007.

Both of my kidney surgeries were done in Alaska. 

My early treatment was fairly chaotic.  It took Seatle to get things squared away. 

After your surgery you will need follow ups.  Which can be polite conversation to see where it hurts.  Or imaging then the polite conversation. 

Since evey doctor can do things his way, I would make an appointment with somebody.  They will then shuffle you off to where you need to be.  That is how it happened for me.  These guys meet every so often and talk about what is going on in their patients treatment.  So they all know who you are and what you may need. 

I would try Scott first.  Thats just me. 

Bobby

donna_lee

Yeric said:

Other stuff

Scott Tykodi.  I have never met the man.  However he is the doctor coaching my oncoligist currently. 

Dr. Bhatia,  This is the guy that handled me though the clinical trial I was invited to in 2007.

Both of my kidney surgeries were done in Alaska. 

My early treatment was fairly chaotic.  It took Seatle to get things squared away. 

After your surgery you will need follow ups.  Which can be polite conversation to see where it hurts.  Or imaging then the polite conversation. 

Since evey doctor can do things his way, I would make an appointment with somebody.  They will then shuffle you off to where you need to be.  That is how it happened for me.  These guys meet every so often and talk about what is going on in their patients treatment.  So they all know who you are and what you may need. 

I would try Scott first.  Thats just me. 

Bobby

I'm seeing standard treatment plans listed

An ultrasound for maybe a gall stone found my masses in kidney and liver. CT to see if it was in other orgsns.  In my case, they confirmed both masses.  A full bone scan that ruled out mets to bones.  Then surgery in June 2006 to remove the right kidney, a set of nodes in the fossa adjacent (2 or 11 positive), left half the liver, and the gall bladder (which had a problem but was not cancerous.)

At that point I was not put on any drugs as there was not active site that could be monitored.  And nine years ago, most of the drugs being used were in clinical trials.

I was put on regular CT's-3 months apart.  1 year after first surgery, I had another to remove a single node in the abdomen that had biopsied as positive.  Then a CT at 3, 9, 1nd 12 months-and again, another positive node that glowed on the PET scan.  Surgery again.

Since that time, 2008. I've had CT's.--more stretched out between tests, and alternating with Chest x-ray/US of abdomen and pelvis.  Thus far, no eveidence of the Kidney cancer returning. 

(Although I got a call back on my lastest mammo-I'll deal that when the test is finished and read.)

So there is hope that the surgery gets it all and that you don't have any recurrence, and you don't have mets to untreatable places.  Always have Hope.    Meanwhile, get those personal ducks in a row so you can focus on recovery and survivorship.

Hugs.

PS. for those of you who don't know about Udub, that stands for University of Washington (UW)  I'd say Go Beavers---but they've already lost too much this season.

Donna

agu

Yeric said:

Other stuff

Scott Tykodi.  I have never met the man.  However he is the doctor coaching my oncoligist currently. 

Dr. Bhatia,  This is the guy that handled me though the clinical trial I was invited to in 2007.

Both of my kidney surgeries were done in Alaska. 

My early treatment was fairly chaotic.  It took Seatle to get things squared away. 

After your surgery you will need follow ups.  Which can be polite conversation to see where it hurts.  Or imaging then the polite conversation. 

Since evey doctor can do things his way, I would make an appointment with somebody.  They will then shuffle you off to where you need to be.  That is how it happened for me.  These guys meet every so often and talk about what is going on in their patients treatment.  So they all know who you are and what you may need. 

I would try Scott first.  Thats just me. 

Bobby

Bobby, Thanks for the Scott

Bobby, Thanks for the Scott Tykodi mention. I noticed he seems to be popular choice on online cancer forums. I have asked my specialist to refer me to Scott. My doctor mentioned that Scott is not a surgeon but medical oncologist. It seems both of them have worked together closely.

Yeric

Surgeon

Okay.  I thought you had the surgeon issue solved.  If not Scott is still the guy to see.  He can help find a good one for you.  Then pick up your case when needed.  And have a heads up on your history.  I did have my brain surgery at udub.  A good place to be. 

Bobby

todd121

agu said:

Bobby, Thanks for the Scott

Bobby, Thanks for the Scott Tykodi mention. I noticed he seems to be popular choice on online cancer forums. I have asked my specialist to refer me to Scott. My doctor mentioned that Scott is not a surgeon but medical oncologist. It seems both of them have worked together closely.

Specialists

I don't know Seattle in particular, but a few comments about specialists. For your surgery, I would find someone that is a urologic oncologist that has experience in robotic laparoscopic surgeries. Even though you are not eligible for a partial, doctors that have that kind of experience (in my opininion) tend to be better trained. Radical nephrectomies have been around a long time, so even if you can't find this kind of specialist, you will be fine with a typical urologist. I had a radical but it was done laparoscopically with a robot. I think my recovery was faster because of that, even though I did end up with a pretty large incision.

I would connect with a medical oncologist with RCC experience ASAP. They know this disease much better than the urologists and will be more familiar with how/where the disease spreads and what tests to order to make sure of your staging. You won't get accurate staging until after the surgery and they've had a chance to analyze the tumor in the lab. Then you will find out the type of RCC (if it is) and the stage and Furhman grade (which is how aggressive the cancer is). Because of the size of your tumor, you are likely stage 3, but it could be stage 2. If the tumor has grown into any of the blood vessels (has had access to your blood supply), it will be Stage 3. I had thought I was Stage 1 going into surgery but when the pathology result came back, it was Stage 3 because it had invaded the into some of the blood vessels in the kidney.

The medical oncologist will probably want to do a baseline CT scan after your surgery. If you haven't had a CT of your lungs, they probably will want to do that too. Spreading to the lungs is very common, and an X-ray will not pick up early disease. They may want to do a nuclear bone scan to rule out mets to the bone.

If you have no sign of mets, there most likely won't be treatment other than the nephrectomy. There is no adjuvant therapy at this time (treatment to keep cancer from spreading/returning). The medical oncologist will probably order you to be followed on a 3-4 months scan schedule (CT of chest/abdomen/pelvis) for the first 2-3 years, then 6 months for a year or two then annually. Personally, I will get CT scans yearly for the rest of my life. I know too many friends that have had mets years later.

Do find a medical oncologist with RCC experience. Someone that sees lots of kidney cancer and keeps up with the latest advances. Because this field is rapidly changing, you want someone that will keep close tabs on you and knows how to react quickly and either give you drugs, give you surgery or send you to a radiation oncologist. Catching things early and reacting quickly to this disease is the key to living a long time. By the time symptoms show up, it can be too late to control it.

All my 10 cents worth.

I've been thinking of moving to Seattle. I'd be interested in hearing your experiences and what you think of the care there. If you find a good medical oncologist/group with lots of RCC experience, would you please share it with me? You can message me on my profile.

Best wishes to you,

Todd

agu

todd121 said:

Specialists

I don't know Seattle in particular, but a few comments about specialists. For your surgery, I would find someone that is a urologic oncologist that has experience in robotic laparoscopic surgeries. Even though you are not eligible for a partial, doctors that have that kind of experience (in my opininion) tend to be better trained. Radical nephrectomies have been around a long time, so even if you can't find this kind of specialist, you will be fine with a typical urologist. I had a radical but it was done laparoscopically with a robot. I think my recovery was faster because of that, even though I did end up with a pretty large incision.

I would connect with a medical oncologist with RCC experience ASAP. They know this disease much better than the urologists and will be more familiar with how/where the disease spreads and what tests to order to make sure of your staging. You won't get accurate staging until after the surgery and they've had a chance to analyze the tumor in the lab. Then you will find out the type of RCC (if it is) and the stage and Furhman grade (which is how aggressive the cancer is). Because of the size of your tumor, you are likely stage 3, but it could be stage 2. If the tumor has grown into any of the blood vessels (has had access to your blood supply), it will be Stage 3. I had thought I was Stage 1 going into surgery but when the pathology result came back, it was Stage 3 because it had invaded the into some of the blood vessels in the kidney.

The medical oncologist will probably want to do a baseline CT scan after your surgery. If you haven't had a CT of your lungs, they probably will want to do that too. Spreading to the lungs is very common, and an X-ray will not pick up early disease. They may want to do a nuclear bone scan to rule out mets to the bone.

If you have no sign of mets, there most likely won't be treatment other than the nephrectomy. There is no adjuvant therapy at this time (treatment to keep cancer from spreading/returning). The medical oncologist will probably order you to be followed on a 3-4 months scan schedule (CT of chest/abdomen/pelvis) for the first 2-3 years, then 6 months for a year or two then annually. Personally, I will get CT scans yearly for the rest of my life. I know too many friends that have had mets years later.

Do find a medical oncologist with RCC experience. Someone that sees lots of kidney cancer and keeps up with the latest advances. Because this field is rapidly changing, you want someone that will keep close tabs on you and knows how to react quickly and either give you drugs, give you surgery or send you to a radiation oncologist. Catching things early and reacting quickly to this disease is the key to living a long time. By the time symptoms show up, it can be too late to control it.

All my 10 cents worth.

I've been thinking of moving to Seattle. I'd be interested in hearing your experiences and what you think of the care there. If you find a good medical oncologist/group with lots of RCC experience, would you please share it with me? You can message me on my profile.

Best wishes to you,

Todd

Todd,
Thanks for the detailed

Todd,

Thanks for the detailed reply. That is exactly the type of information I was looking for.

I have been assigned a urology surgeon who will perform the radical end of December. He specializes in surgical oncology with focus on urologic oncology and minimally invasive and robotic surgery. I wasn't very impressed with him after the only time we met as he appear to be in rush to leave. This was my first meeting with anyone related to urology/kidney cancer at UWMC after my PCP discovered kidney mass in CT scan and sent referral to SCCA. The surgeon didn't discuss anything that wasn't related to radical surgery. He didn't seem interested in performing any additional tests to investigate any spread of cancer or do any kind of diagnostics.

He seem to have been more responsive via email. Through email exchange, he referred me to another surgeon at Viriginia Mason for second opinion. I also asked him to refer me to Dr. Scott Tykodi as suggested by another poster. Dr Tykodi seems to specialize in Medical Oncology with expertise in RCC and immunotherapy.

Overall, I haven't heard very positive things about UWMC specially from past cancer patients so I am open to switching to Viriginia Mason if I like their surgeon.

Where are you moving from? My previous experience has been with MD Anderson for a friend's cancer treatment when I lived in Houston 17 years ago. I don't know how is the quality of care at MD Anderson now, but based on my experience with UWMC as patient and with UW as student, I will take MD Anderson anytime. If I had a choice to move to Seattle to be treated at SCCA/UWMC or Houston at MD Anderson, I most probably will pick MD Anderson in Houston.

todd121

agu said:

Todd,
Thanks for the detailed

Todd,

Thanks for the detailed reply. That is exactly the type of information I was looking for.

I have been assigned a urology surgeon who will perform the radical end of December. He specializes in surgical oncology with focus on urologic oncology and minimally invasive and robotic surgery. I wasn't very impressed with him after the only time we met as he appear to be in rush to leave. This was my first meeting with anyone related to urology/kidney cancer at UWMC after my PCP discovered kidney mass in CT scan and sent referral to SCCA. The surgeon didn't discuss anything that wasn't related to radical surgery. He didn't seem interested in performing any additional tests to investigate any spread of cancer or do any kind of diagnostics.

He seem to have been more responsive via email. Through email exchange, he referred me to another surgeon at Viriginia Mason for second opinion. I also asked him to refer me to Dr. Scott Tykodi as suggested by another poster. Dr Tykodi seems to specialize in Medical Oncology with expertise in RCC and immunotherapy.

Overall, I haven't heard very positive things about UWMC specially from past cancer patients so I am open to switching to Viriginia Mason if I like their surgeon.

Where are you moving from? My previous experience has been with MD Anderson for a friend's cancer treatment when I lived in Houston 17 years ago. I don't know how is the quality of care at MD Anderson now, but based on my experience with UWMC as patient and with UW as student, I will take MD Anderson anytime. If I had a choice to move to Seattle to be treated at SCCA/UWMC or Houston at MD Anderson, I most probably will pick MD Anderson in Houston.

Seattle

I live in Orange County California. There are no RCC specialists in OC, so I drive to City of Hope now. I've seen docs at Cedars Sinai and USC. Los Angeles has great care for RCC. Dr. Figlin at Cedars spent years at UCLA and trained quite a few docs that now do researchin RCC. I feel like I have great choices here. It'd be hard to move away from this unless I have at least decent choices where I go. So I'm not sure about moving.. Right now it's really not likely. I plan to visit and look into it a little more.

Good luck with finding docs you can depend on. My surgeon was also like yours. However, he was great. I'm glad I had a surgeon who really knew how to do kidney surgery. Even though he didn't know much about the spread of RCC, I was very glad to have him. But I moved on right away to places that had medical oncologists that know RCC well.

Todd