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Treatment Provider Selection

thingone
Posts: 37
Joined: Feb 2019

I'm new here and am glad finding this incredible forum. I was incidentally diagnosed with a solid-appearing enhancing left exophytic renal mass in CT and MRI last December.  The mass is in posterior midpole measures 10x4x15 mm.   I feel very lucky that it was found early.  My previous urologist oncologist offered me three options:  active surveillance, ablation, and robotic partial nephrectomy.  I elected to go with the surveillance approach at least for 6 months based on all information my Doctor provided.  

After doing some homework here and there, I am leaning toward a robotic partial nephrectomy treatment regardless result of next image scan, since my health condition for surgery does not improve with age and given that most renal masses will continue to grow with time, delaying surgery with active surveillance is unlikely to improve outcomes.  

I have a couple of questions regarding selection of urologist oncologist/hospital for the surgery treatment and would like hear some advices and experiences.  I am closer to UC Davis Comprehensive Cancer Center, but highly reputed Stanford or UCSF is on my radar. I have learned some pros and cons going a local and highly national ranked hospital in general, but am still struggling on this.  Is UC Davis good enough to my case? Are there any significant issues I should be aware of if I prefer to Stanford or UCSF? Can I have three hours of riding in a couple of days after the surgery?  Thank you.

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

I have suggested to many here with complicated diagnosis to go as high up the food chain as possable. That being said you have a relatively simple diagnosis If you are comfortable with your doctor at UC Davis go for it. Others may disagree.

 

 

 

 

icemantoo

thingone
Posts: 37
Joined: Feb 2019

Thank you, Icemantoo, for your candor in suggesting that I have options for the both. I appreciate your point that we should go as high up the food chain as possible. Actually, I have read pretty much all of your comments in this forum and really leared a lot. This is a forum that I had never wanted to join but immediately falled in love with since I joined, as it is filled with all the fullness of God. This incredible forum becomes a better place because you are in.

thingone
Posts: 37
Joined: Feb 2019

I am just following up. My interpretation from Icemantoo's suggestion is that I should be able to have about three hours riding home in car after the surgery. I learned that I will most likely have some discomforts and tough days after the surgery no matter where I go for the surgery. But, If I pick up more reputed hospital which means relative longer distance, I don’t know how others deal with potential risk due to longer delay associated to the longer distance when I get complication at home.  Thank you for your time reading and responding.

stub1969's picture
stub1969
Posts: 796
Joined: Jul 2016

I had a little over an hour ride home (on an interstate highway--so it was faily smooth) the day after my surgery.  It wasn't fun, but it was doable.  My suggestion is seek out the best medical center; if it's three hours away--so be it.  If you take breaks and rest, you'll be fine.

Good luck!

 

Stub

thingone
Posts: 37
Joined: Feb 2019

Thank you Stub. Your experience and recommendation are so helpful and meaningful to me. My conclusion from all comments that I have gotten is that seeking the best medical service has higher priority than other hassle that can be managed. I am contented to make up my mind and my family decision. Take care!

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

You are probably not going to like  a 3 hour ride 4 days after surgery.

 

 

 

icemantoo

thingone
Posts: 37
Joined: Feb 2019

Hello Icemantoo, thank you very much for the suggestion not taking a long ride in about 4 days after surgery. This also resolved my concerns of complication and other risks that I can think of for the time being. I can't thank you enough for the suggestions that you have offered to me. Have a great day!

       

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

e took a break by stopping at a friend's house mid-way. (see my bio for what the first surgery entainled).  On the 2nd-recurrence in a node a year later, I drove part of the way home.  Probably wasn't supposed to, but I felt good and hadn't taken any pain pills that day.  I live on the southern Oregon Coast and went to Oregon Health Sciences University.

There are so many variables.  UC Davis should be able to take care of you.

About problems after getting home...there must be medical care relatively close by.  They will see you and address any emergency problems.

donna_lee

thingone
Posts: 37
Joined: Feb 2019

Tons of thanks for your time sharing experience and correcting my misunderstanding on emergency care for post-surgery complication. That means great to me as I don't need to have long drive for potential probelm except regular follow-up exams. I have diffculty to find the 5 hour drive story that you experienced in your bio, can you please send me a link on it if it is still there. Thank you.     

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

I just checked my bio.  It's still on this board, minus the picture.  Since I put it up "years" ago, life has gone on.  Regular checks/tests/labs, etc. that keep me on the healthier side of living.

On a side note: my d-i-l was 7 months pregnant with their second girl at the time of  my Dx.  When I held that new baby, I told her quietly that I wanted to be around for her wedding, but she couldn't get married till she was 50.  She's 12 1/2 now and I'll be 75 next round.  Don't know if she'll wait until she's 50, but I know she'll be into adulthood and making a way for herself.  That's a pretty big long term goal, but I might as well try for it.

At three weeks post the first surgery, I got sick with I didn't know with what.  Sitting on the toilet and throwing up in the bathtup is difficult, so had my hubby take me to the ER.  They did an Xray to rule out any bowel or sm. intestine perforation.  After seeing my history of what had been surgically removed (R. Kidney, half my liver, gall bladder and the main bile duct), hydration and being put on anti-nausea meds, I was told I had pancreatitis.  It's no wonder-since a lot of the removed parts aid in digestion.

So don't hesitate to use your ER or walk in clinics or call your PC.  That's just plain looking after yourself.

Good luck,

donna_lee

thingone
Posts: 37
Joined: Feb 2019

Dear Donna_Lee, I read your bios and also found some of your comments in this forum, which are inspirational and influential to people like me.  Your hope and love in your heart, along with taking care of yourself in a regular basis, have awarded you a life full of passion, purpose, and miracles. It is gratful to know that I can take advantage of local medical service during post-surgery. I believe what I heard: one way to feel great about yourself is to love yourself and to take care of yourself. Thanks you again.

 

 

 

thingone
Posts: 37
Joined: Feb 2019

 

 

 

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

I live in the SF Bay Area.  My insurance allowed me to b3 referred to Seton Medical Center (no way), CPMC (only in a pinch) or Stanford.   I took Stanford before the word was even out of my primary physician’s mouth.  The urologic oncologist I had was Dr. Gill, and he was amazing.  Like you, we did active surveillance, but mine was 2-1/2 years as the little bugger didn’t do much.  When it did grow (albeit just a little), he referred me to Dr. Geoffrey Sonn for robotic surgery.  Dr. Sonn, despite looking like he was about 19, was e1ually great.  He performed a robotic assisted partial in 2016.

thingone
Posts: 37
Joined: Feb 2019

Hello Bay Area Guy,

Your information is exactly what I need now.  Your experience working with Dr. Harcharan Gill and Dr. Geoffrey Sonn is so helpful to me, as I am currently doing research to self-refer myself so as to discuss with my primary care physician. A follow-up question comes into my mind. As you said and Stanford Heath Care website indicates, Dr Gill is an amazing urologic oncologist specialized in kidney cancer and surgical treatment including robotic surgery,  why did he refer you to Dr. Sonn for your surgery instead?  If I would like to self-refer myself to some urologic oncologist at Stanford for surgery,  how much chance I have to get his or her treatment, assuming I have plenty of time waiting? I can't thank you enough for all of what you offered. Take care of yourself well.  

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

While I think Dr Gill may have surgical experience, I don’t think that is his specialty.  I think he is more diagnostic and I believe he is involved in the ablation therapies.  Dr Sonn, on the other hand, is a cutter.  While he can do diagnostics, his specialty is surgery.

In te4ms of self-referring, I believe all you need to do is phone the particular clinic and arrange an appointment with Dr. Gill.  The people handling the scheduling are extremely nice and helpful.

thingone
Posts: 37
Joined: Feb 2019

Thank you, Bay Area Guy. I appreciate your suggestion. Best wishes on your continued recovery.

thingone
Posts: 37
Joined: Feb 2019

 

jroco's picture
jroco
Posts: 21
Joined: Mar 2019

 

 

 

First post here. THINGGONE, I personally think you are heading in the right direction. When mine was incidentally found at 1.3 CM,  I was given similar options, partial neph and cryoablation (freezing).  At the time, the cryo sounded like a good option so I went and visited a radiologist that could perform it. He said he couldn’t guarantee an accurate biopsy while doing procedure because it was so small. Not sure how he did it but he talked me into active surveillance.  I had 8 terrifying months to regret my decision and do some research. The conclusion that I came to was that active surveillance was more suited to elderly who it might not be worth cutting out a potentially benign or non-aggressive tumor as they usually claim they mostly are.  I’m now thinking if you are healthy, get the dang thing cut out as its my understanding even benign tumors can grow. Plus, you will get an accurate pathology report and slightly better chances of it not recurring. Not to mention less exposure to radiation potentially.  I suffer from anxiety anyway and you can only imagine what was going through my mind waiting for follow up scan. Radiologist suggested a year, I said are you effin crazy let’s try 6 or 8 months. My mass only grew 2mm in 8 months so I am now at 1.5 CM. I’m scheduled for a robotic partial nephrectomy this Thursday and realize how lucky I am it’s so small but scared to death nonetheless.

 

 

 

 

thingone
Posts: 37
Joined: Feb 2019

Hello JROCO, No one likes the feeling of going under doctor’s knives under robotic assistance. Stay strong and go ahead. Best wish for your positive result!  Wishing you a very fast recovery!

I want to thank you for sharing your experience making a right decision. I am glad I have reached the same conclusion as you did for a similar situation. My previous urologic oncologist told me that there is no way to definitely know if the mass is benign or malignant until taking it out of my body. There were several reasons I elected active surveillance for now. First, my doctor told me I do have this option due to its size. Second, I just changed my insurance from Kaiser to Anthem PPO, it always takes some time to get familiar to a new network so as to make a comfortable decision. Third, this period of time waiting may be a good opportunity for me to prepare my body for a treatment.  I am 57 and believe I am still young and strong enough to have this kind of treatment.

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

jroco,   

 

First you should start a new post when you change the subject.

 

That being said your prognosis at 1.5 cm is excellent for a full and complete recovery from the surgery alone. No harm was done by active surveillance except for a little anxiety.I would wish you a painless surgery for Thursday, but others would laugh at me. We have all been there and done that.

 

 

icemantoo

eug91's picture
eug91
Posts: 148
Joined: Jan 2019

This is a great forum and was a huge help to me when I was first diagnosed. If you have any questions or concerns, share them here - we're here for you. 

thingone- one minor tip I learned here. If you do end up doing the drive to Stanford or UCSF, you'll want to bring a pillow with you for the car ride. Just so you can have the seat belt across you without causing you discomfort. 

 

thingone
Posts: 37
Joined: Feb 2019

Thank you, eug91, for your warm welcome. I will definitly bring a pillow or two on the way home after surgery. To learn more in this forum, I will dig into it more. Take care!  

jroco's picture
jroco
Posts: 21
Joined: Mar 2019

 

Icemantoo, my bad on potentially steering the discussion in a different direction. Thingone, thanks for the well wishes, same to you. 

 

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