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standard of care

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Just curious to see what the post-op standard of care (in regards to scans) is with those in similar circumstances as mine.  I will be flying to Oklahoma City in November to have my first set of scans since having a radical nephrectomy on May 29th, and by scans, I mean a chest x-ray.  I am also scheduled to have a CBC (complete blood count) and CMP (comprehensive metabolic panel, i think).  That's it. 

Recently, it was suggested to me by another member of this elite group, that a chest x-ray may not be sufficient screening.  Now I'm worried that my doctor should be doing more and I'm not sure how to broach the subject with him. 

Because my tumor was relatively small at just 4.7 cm, contained to the kidney and had clear margins, I assumed I would require the very minimal of care.   My adrenal gland was not removed nor were lymph nodes biopsied, so, in my mind, my case was pretty text book, which might explain why I'm only having a chest x-ray vs a ct scan.  I understand that this cancer often mets to the lungs, but doesn't it make since to keep a watchful eye on my now, lone kidney? 

My tumor was stage 1, grade 2, Clear Cell RCC.  Anybody else with similar tumor size and type, I'd love to know what your first set of post-op scans consisted of. 

I had blood work done at my 6 week post-op check up and my doctor's nurse told me if there's a concern with my blood work, they'll call me.  I never heard back from her so I can only assume everything was OK.  But, shouldn't I be told what my kidney function is, rather than just being told that no news is good news?  Am I being too passive? 

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

Hey Twin. I had a 1.6cm Stage 1 Grade 2 taken out 6 months ago. My scans are going to be a MRI though just letting you know. Here's to some good scans for us!

 

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Cran1, are you treated by an oncologist or a urologist?  I'm treated by a urologist, having never seen an oncologist before.  Maybe that's the difference in standard of care.  When will you be having your MRI?

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Twinie, 

I had a similar size tumour to yours mine being 4.5 cm. Stage 1b Grade 3, I had a partial. I have had TAP CT scans, an ultrasound, full bloodwork and kidney function tests. In six months I will only be having ultrasound and chest X-ray. I see my surgeon each time who is a Urologist, but he is backed by a medical panel which includes an Oncologist.

 

Djinnie

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Djinnie, thanks for your input!   I'm sure your tumor, being a Grade 3 vs my Grade 2, would warrant a more watchful eye, and it certainly sounds like your'e in good hands.

btw, that little pup in your profile pic is prescious!

 

Sindy

 

Septemberzoe
Posts: 43
Joined: Sep 2013

Had a 3.5 cm clear cell rcc stage 1a grade 2...before surgery had abdominal and pelvic MRI with and without contrast, blood work and pelvic and abdominal CT with and without contrast...after pathology results from surgery had a bone scan and chest CT...scheduled for blood work, pelvic, abdominal and chest CT in beginning of December...

icemantoo's picture
icemantoo
Posts: 1473
Joined: Jan 2010

Sindy,

 

My tumor was similar to yours  and they coud  almost havd been twins (4.2cm V. 4.7cm). At 5 months I had an MRI and bloodwork. I had a small cyst on my other kidney at 5 mos. so he ordered another CT. I had another CT every 14  months or so until my 65th biirthday and Medicare. Each year in August  I now have bloodword and what the Doctor calls A Urologist's handshake (prostate exam). You can skip that. For the last 5 years or so I have just had  bloodwork and a pelvic ultra sound each year.

 

 

 

 

Icemantoo

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Thanks Ice, so happy I'm fully clothed and standing upright when I shake the hand of my urologist!!

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Septemberzoe, sounds to me like you are in great hands!  The more I read on this forum, the less impressed I am with my doctor.  Having said that, his surgical expertise is second to none in OKC and I was so very fortunate to have had a "friend of a friend" get me in to see him.  His specialty is kidney transplants and he only took me on because my daughter dates the son of a high profile defense atty who happens to be a good friend of the doctor.  I don't know how many cancer patients he treats, but he did say he'd turn me over to an oncologist once he releases me at my 1 year post-op.  I pray I'm doing the right thing by taking his advice and not seeking treatment by an oncologist sooner.  If after I see him in November,  I still have this nagging feeling deep down inside, that I should be doing more, I will probably take matters into my own hands. 

Best of luck to you with your impending scans and lab work!!

a.oakley
Posts: 32
Joined: Oct 2012

My husbands tumor was 5 cm.  He had a CT/PET scan preoperatively to see if there was metastatic disease.  They wanted to know the "big picture".  His family practice doctor and the renal oncologist, and renal surgeon all wanted this test.  Turns out there was metastatic disease to his bones, which made him Stage 4.  His spine was stabilized with surgery and he was started on targeted therapy, even though we wanted his kidney tumor removed in addition to the spine surgery.  Long story.  We eventually found a surgeon willing to do it and a tumor board/oncology group that approved.  So his kidney tumor was removed and he continues on with targeted therapy.  He has PET/CT chest, abdomen and pelvis scans every 8 weeks to 12 weeks.  He also has a MRI of his spine done at that time.  He has lab work done every month checking (renal function, thyroid function, CBC, Calcium, liver function etc.).  We really like the fact that our family practice doctor is very involved and cares about the whole patient.  He doesn't do the orders for tests.  They are ordered by the renal oncologist, but he does give us his opinion and helps steer us in the right direction to be our own advocate, and make referrals to help us.  He helped us get into a visit with a renal cancer surgeon when the first group refused to do surgery.  I would recommend to you that you ask for copies of all your lab work and the pathology report. 

I am beginning to think there isn't much of a "standard of care" when it comes to renal cancer.  I learned early on here from "Fox" that if you want something, just be your own advocate and pursue it.  Thank you Fox.  You really helped us. 

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

A., thanks for your reply!  I read stories like your husband's and, I feel bad for whining.  Honestly, I can't even compare my situation to his.  It sounds to me the fact that he had doctors interested in "the big picture", no doubt, has added years to his life.  That said, it sounds like he (and you) still has a battle to fight and I will lift you both in prayer!

My doctor is very good at surgery, but, I feel like now that the tumor is gone he kinda has the attitude that all is well and I can relax.  He tells me not to worry and to stop looking for trouble.  I'm not looking for trouble...I just want to see the "big picture". 

I do have copies of all my records, including the surgery report, pathology report and lab work.  It really wasn't as informative as I had hoped, however, it was upon getting those records that I learned my adrenal gland was not removed and lymph nodes were not tested.  My pre-op paperwork indicated the adrenal gland and nodes would be removed/biopsied, so I  assumed that was the case.  I was wrong to assume...my daddy told me years ago, to never assume.

I learn something new everytime I log in to CSN, thanks to Fox, Texas, Iceman and so many others, just like you!  So, thanks again for chiming in.  It's heartwarming to see someone like you, with so much on your plate, reaching out to support others, like me.

Bless you!

 

todd121
Posts: 515
Joined: Dec 2012

My urologic oncologist wanted to follow me, but I went to visit 3 oncologists instead. But I was Stage 3 and told by the two RCC specialists that my recurrence risk was higher, like 50%. The urologic oncologist said I was cured. He wanted to follow me with a chest xray and ct scan of abdomen and pelvis after 4-6 months. When I asked about why to wait that long, he said he was hoping that my kidney function in my other kidney would have improved enough by then to allow me to have a ct scan with contrast (my creatinine was 1.9 post op).

I've been told that that is the minimum standard of care. A chest X ray and ct of pelvis/abdomen every 4-6 months for first 2 years then yearly to 5 years.

The first oncologist I saw was fresh out of school. He really didn't know much about RCC. He told me that I was pretty much cured also (although not quite as optimistic as the surgeon). He plugged some numbers into some website and told me I only had a risk of recurrence of like 13%. I was lucky that my uncle is a retired oncologist so I got some good advice along the way. He had read the studies, and he told me he felt the guy was way off base and urged me to see specialists in RCC. I live in Orange County, California and there are several cancer centers nearby. I made appointments with Dr. Pal at City of Hope and Dr. Figlin at Cedars, both RCC experts. They independently put my risk of recurrence at 50%. One urged me to enter a study, the other just offered it to me, but didn't urge me to do it. I decided to do a study. I'm in the everolimus study at City of Hope with Dr. Pal. Dr. Figlin suggested if I did a study, I should take votrient.

Your tumor being small and stage 1 and grade 2, makes your recurrence expectation pretty small. That's good news.

You might want to think about seeing a medical oncologist for follow-up. It's up to you, not the urologist (depending on your insurance too, I suppose). If, heaven forbid, you did have something come up, you'd need to see one anyway. You might also want to see a nephrologist just to get some basic counseling on living with one kidney and have him check your blood work to make sure your remaining kidney is ok. I did that too. I see a nephrologist a couple of times, and now he says I don't need to come back for a year.

The chances of you having a tumor in your other kidney is really small. Only something like 5% of second site mets are in the other kidney (unless you have a genetic predisposition to kidney cancer). So your chances are something like less than 0.3%.

Are you in Oklahoma, by the way? Why are you going to OKC for treatment? I'm from Oklahoma. Just wondering if we're from the same area. I grew up in Duncan and southwest OKC.

Todd

P.S. My adrenal gland was also not removed and no lymph nodes were removed either.

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Thank you for the feedback, Todd.  I do realize my chance of recurrence is slim to none, however, having both parents die with cancer, both in their early 60's and just 9 months to the day apart, I can't help but worry.  My dad's was colon cancer but mama's primary location was unknown.  She was pretty eat up with it and died shortly after diagnosis, as did my daddy, dying just 5 weeks after diagnosis.  It's in my genes, I guess.

I live just outside OKC in the town of Mustang.  I work in Ohio so I do a lot of flying back and forth.  It's madness!!!

 

Sindy

todd121
Posts: 515
Joined: Dec 2012

I went to Western Heights High School. I lived 10 years right next to the junior college there near Moore.

My grandmother passed away of colon cancer that had spread to her liver. My grandmother didn't last too long after her diagnosis either.

I can understand your worry. Even with a few percent chance, I'd worry too. I think as time goes on, you will get less worried.

You do want to get followed up. If you aren't comfortable getting followed by your urologist, see if you can find a good medical oncologist with some experience with RCC and let him follow you. You might get some reassurance knowing somebody that really knows what they are doing with this are following you.

A good place to look for doctors that specialize in RCC, is to check out the drug studies going on in the areas where you live. Usually the centers/doctors involved in the studies have an interest in the kind of cancer the study is aimed at. That's how I found Dr. Pal and Dr. Figlin. I had never heard of either of them. I went onto one of the websites where you can search for drug studies, then found the doctor's name associated with the study and called for an appointment. Look for studies related to clear cell renal cell carcinoma. I think others have posted the websites to search. The nih and the american cancer society have search engines to search for studies. If you can't find the website, let me know and I can find them for you.

You can also just look for papers that have been written and look for doctors associated with institutions (medical schools or hospitals) that are near where you live or work.

Or you can ask here for recommendations.

Best wishes,

Todd

twinthings's picture
twinthings
Posts: 385
Joined: Jun 2013

Mind if I ask what year you graduated?  That's my neck of the woods! 

At the risk of sounding stupid, it never occurred to me to google RCC clinical study in OKC.  Duh!!  But, in my defense, I didn't realize patients had to 'seek' them out.  I figured if I were eligible for one, my doctor would have told me.  I mean, the average patient, having never dealt with cancer before doesn't know what questions to ask and therfore, rely on our doctors to do what's in our best interest. 

Having lost my parents to cancer, one would assume I am well schooled in cancer and/or cancer treatments.  I would imagine my doctor assumed the same.  What my doctor doesn't know is that, due to circumstances beyond my control, when I was very young I was seperated from my mother,  then later, from my dad.  So, I was not at all involved in their battles with cancer.  In fact, I didn't know my mother had a memorial service until after the fact.  So, when I say "the average patient, having never dealt with cancer" I am referring to myself, because even tho my parents both died from it,  technically, I personally, have never dealt with it. 

Thanks for the advice, Todd.   I'm definitely going to investigate it but, I imagine my work situation would prohibit me participating in a clinical trial.  I do hope your'e right about worring less with time, but I'm within 15 years of the age my parents died so, for some reason, that adds to my worry; not to mention, I am a worrier by nature.  But, I know it's that worry that will push me to find an oncologist with experience in RCC.  According to my surgeon, I won't be "turned over" to an oncologist until I am one year post-op, at which time, he said he could refer me or I could find my own.  I think I'll follow your advice and do a bit of research.

Sindy

 

Sindy

handpuppet64
Posts: 29
Joined: Oct 2013

My tumor was huge, 7.5 cm x 15 cm however, it was fully contained in the kidney. Stage 2, but the cells were grade 4.

I have to have scans every 3 months.

I also have to have lung surgery soon because I have a nodule in one lung.

My husband also had kidney cancer.

I think it's good your tumor was small- from what I am reading here is some of the scans - aren't accurate and lung nodules, in fact need to be biopsied.

What about asking your doctor, "What about scans, should I get a scan?"

I'm 54, and it's been my experience, with these things, that doctors will tell you different things and treat things in different ways.

 

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