**UPDATED**Had Partial Nephrectomy**- Just Dx'd & weighing tx options

todd121

KrisG said:

Thank you everyone for your input!

Well I met with the Urologist that specializes in Cryotherapy Ablation in my city. He still recommends going with the Cryo. My first thoughts are...it's Cancer...get it out of me. Period. I did obtain a copy of my biopsy results so that I know exactly what I'm dealing with. Dr did tell me that my Cancer is the non-agressive kind, slow growing, so that I have time to make up my mind as to what treatment I want. He did state that I would NOT need any Chemo or Radiation afterwards (which ever treatment I went with).

"Left lower pole Renal Mass, CT guided core biopsy. Renal cell carcinoma, classic clear cell type. Fuhrman Grade 1."

I heard from my insurance company...ugh! They denied me going to UW Madison for a 2nd opinion as it's not in-network. But they did give me the names of 3 Chicago area hospitals/clinics that are in-network. Loyola University Medical Center or University of Chicago Medical Center or University of Illinois Hospital-Chicago. Anyone have any experience with any of these places? 

I still leaning towards a partial nephrectomy rather than the Cryo Ablation. My overall physical condition I'd say is fair...well controlled hypertension, end stage degenerative joint disease (I need both knees replaced), over-weight but hey I'm working on weight loss & have lost 41 lbs since end of March. No heart conditions (I underwent heart testing earlier this year and everything was good). Just overall deconditioned because of my knees. Ortho Doc wanted me to lose 45 lbs before he'd operate and I'm so close to that goal...but then this kidney thing popped up. Priorities suck. Financially...I've met all my insurance deductibles & out of pockets expenses for this year. So, I do not want to wait too long to start my treatment. (Sucks that money becomes a part of a treatment plan)

Cryo

Something to consider, without the surgery they cannot fully give you a stage, grade or type of cancer. They can't tell you if your margins are clear. Only a a full pathology report can do that. That information can be important if you get future tumors to know what prognosis and treatment should be. Be sure to consult a medical oncologist that specializes in RCC before you go with any suggestions by urologist, urological oncologists or radiologists. They are the ones that treat metastatic disease. 

Tumors  sometimes are not uniform in their makeup. For staging a tumors stage regardless of size can go from stage 2 to stage 3 if the tumor has grown into any of the blood vessels. You won't find out about this without a pathology report. Follow up for stage 3 is much different than for stage 1. 

Hope I'm explaining myself clearly. Please get the opinion from a medical oncologist with RCC expertise. 

Todd

todd121

Angie1496 said:

Partial nephrectomy

Hi Kris!

 I was thrown into this arena almost 2 months ago.  4.5 CM solid mass on my right kidney.  Perched right at the top.  Found incidentally while lookng for kidney stones on the left side. My CT guided biopsy was non-diagnostic for malignancy... which just meant they couldnt confirm nor deny.  I had a robotic partial nephrectomy Sept 6.  I am recovering very well.  FOrtunately my tumor was not very deep and I only lost 10% of it but before the got in there he was prepared to take the entire kidney and I was prepared to let it go.  I have read about the Cryotherapy, partial and total nephrectomy and I wouldn't have entertained cryo at all.  The doc that found the tumor was indicating it could be a possibility but the other two opinions i received it was not an option. I got my path report today ant it was Stage 1 Grade 2.  My tumor had clear defined margins.  I will need to be monitored for 5 years with scans and ultrasound but I won't need chemo or radiation.  I hope that you are able to get your surgery scheduled and get this taken care of soon!  I know how unnerving it is to be in limbo not knowing what will be done or happen.  

5 Years

Let's not spread the idea that the five year mark is significant with kidney cancer. It is not. Other cancers yes. RCC. No. 

Todd

Rockspin

Jan4you said:

Hello and welcome Kris! Glad

Hello and welcome Kris! Glad you found us.  I like your thorough approach and how you want to be well informed as to what is the best practice. I highly recommend you seek out a 2nd opinion. It will give you peace of mind. Yes?

My only concern, if this were me, is reoccurance with Cryo and such. Laproscopic/robatic is less invasive as I have had 2 such operations, one for other reasons. And I have had 2 open abdominal surgeries so I can compare them. 

We're here for you ALL the way, no matter what you decide. You can also check in at SmartPatients.com for further feedback.

Let us know how you are doing and what they decide. 

Sending you calm, serenity and healing hugs,

Jan

Hi Jan

Hi Jan I had my total kidney removed on Tuesday and took your advice with ice and back brace. I've been walking  just in the house for now but thanks for the advice.

Angie1496

todd121 said:

5 Years

Let's not spread the idea that the five year mark is significant with kidney cancer. It is not. Other cancers yes. RCC. No. 

Todd

I am understanding that now.

I am understanding that now.  Living 6 months at a time!

JerzyGrrl

bmickowski said:

Surgeon?

Boondock my borther just diagnosed with 3.5cm on right kidney. We are seeing surgeon at Slaon on Oct 6...anything we should ask?

If you go to the "Cancer Information" section...

If you go to the "Cancer Information" section of this website, they have some ideas for questions to ask. I found their information helpful. 

couragehealth

life expectancy discussion?

Did most people get doc to explain life expectancy odds when diagnosed? 

Did anyone use Sloan's cancer nomograms/life calculators?

foxhd

Everyone should know

you can not rely on those predictor charts. There are more and more people living with stage 4 kidney cancer without restrictions. Years after charts and oncologists expectations. Some of us are getting pretty good at it. We are chronic but stable.

I've been told several times that 3-6 months may be all I have left. So we have adopted a new prognostic category. I now tell everyone my life expectancy is "Seasonal".

JerzyGrrl

foxhd said:

Everyone should know

you can not rely on those predictor charts. There are more and more people living with stage 4 kidney cancer without restrictions. Years after charts and oncologists expectations. Some of us are getting pretty good at it. We are chronic but stable.

I've been told several times that 3-6 months may be all I have left. So we have adopted a new prognostic category. I now tell everyone my life expectancy is "Seasonal".

Odds are,

 Odds are,  I shouldn't be here at all, let alone STILL be here.  I'm a slacker, so I shouldn't have ended up anywhere close to where I did.  

So, I'm with Fox. Odds are,  the odds aren't accurate.  

Angie1496

I have read and read about

I have read and read about this disease we are battling and decided that I will not allow it to dominate my life or the enjoyment of my life!  I will be diligent in testing and staying on top of my health but I am no longer worrying daily about the what if's or the how longs anymore.  I strongly believe that there should be standard testing for this disease for EVERYONE at a certain age!  Like mammograms and colonoscopys...  If this is caught early as mine was  (incedentally) the outcome is much better for everyone involved! I still do not understand why there is not some sort of standard for this scanning and why insurance doesn't pay for it if you don't have a reason for the scans.  Seems they would want to pay for periodic scans as opposed to long term treatment later on down the road.  I want all my family to be scanned!  regularly!  WE all are high risk for colon cancer because our Dad had it and have to be scanned every 3 years.  Why not the same for RCC?  This is something that really bothers me.  I really want to do something to make the standard change so more people are diagnosed earlier!  

 

Sorry for the rant! I feel strongly about this.  I was only diagnosed because of something else. I would still have that tumor growing in my kidney had it not been for chance and shingles without the rash mimicking kidney stones!

Angie

KrisG

**UPDATE** Had Partial Nephrectomy 11/20/17

Hi...sorry I haven't been back to post until now. I thought I had Bookmarked this forum...but nope.

UPDATE...

After weighing my treatment options my Dr layed out for me, I opted for Surgical Removal of my RCC Tumor to my Left Kidney. On 11/20/17 I under went a Partial Nephrectomy of Left Kidney with Ablation to the margins after the Tumor was removed. Surgery was performed Robotically. I was inpatient in the Hospital for 2 days...coming home late in the afternoon on 11/22. Surgery itself was uneventful per my surgeon. My lab values did not change pre & post op...so no major bleeding or drop in Kidney Function, etc. I did spike a temp for 2 days, but Surgeon said to get up & move more, etc. Fever broke on the 23rd. No change in WBC...so fever was not due to a possible infection.

Recovery so far, is going ok. Good days, bad days. I pretty much stopped taking the Narctic analgesic several days ago, but had to pop one earlier today. There's a couple of the surgical sites that are more sorer than the others. Yes, I realize this is no cake walk and fully intend to take it easy, taking each day as they come. I have a high pain tolerance, living with End Stage Joint Disease in both knees. I'm on a 10# wt lifting restriction for 6 weeks, no work for 6 weeks, no driving until I see my Surgeon next Monday. Incisions for the most part are pretty much healed. I still have my staples in place. JP Drain was removed before I was discharged from hospital. I do have some bloating to abdomen, but nothing horrid. Wearing clothing is problematic...as 2 of my incisions are right where the waist band of my pants rest. So while home, pants are ridin' low to avoid those spots. LOL. I layed in a supply of comfy, soft PJ's & Loungewear for my home recovery period.

I do seem to have a problem sleeping at night...of course I'm normally a stomach & side sleeper. Initially, I slept just on my back, but with a pillow to prop, I rotate side to side now. But seem to wake up around 4:30am or so. Sometimes I can get back to sleep & sometimes not. Naps are good when I can grab one. But, I always seem to remember that I can take one...but then it's really too late in the day to take one. I get maybe a solid 4-6 hrs of sleep in one block, then it's in bits & pieces until I just give up and get out of bed.

I have a roomfull of small projects to keep me busy during my recovery...but I want to wait until after I see my Surgeon next week before starting them, as they involve lifting small items repetively. I plan to keep to my lifting restrictions, therefore I want to be a bit further along post-operatively before starting them. 

I'm still waiting to hear what the final Pathology report will say from the surgery. Hopefully the Surgeon will have that next week. Pre-surgery I was told No Chemo, No Radiation, as surgery IS the Treatment. Hopefully, this statement will stand. 

 

AnnissaP

I am glad everything went

I am glad everything went well! You are doing really well by resting and taking it easy. I too am on a 6 wk restriction for exercise, lifting etc. Surgery seems to be the way to take care of this so your surgeon told you the truth. I had my surgery on the 7th and still get nauseous and still swell (especially by end of day). I hope you continue to have a smooth recovery!!!

KrisG

Saw Surgeon today for Post Op Check

Things went well for my post op check with surgeon. He was surprised & quite pleased by how well I was doing. He said my surgery had been extensive & difficult but he succeeded in removing the entire Tumor, along with the margins around it. Basically minimal loss of actual kidney. Said he "Microwaved" the margins left in the kidney. Pathologist report from the Tumor removed confirmed their first diagnosis of Renal Cell Carcinoma, classic clear cell type, Fuhrman grade 1. The margins removed with the Tumor were clear.

I realize that guarentees are hard to come by, but my Dr told me that basically I wouldn't see this Cancer return in my lifetime. (I'm 62) Surgery was the cure. No Chemo. No Radiation. Follow up CT scan in 6 months, as I'm now on the normal post Cancer prototcol for rechecks & scans, etc.

 

Cybball

Awesome news!  I'm really

Awesome news!  I'm really wanting surgical removal, rather than cryo, depending on what they find.  Glad they got yours removed successfully!!

AnnissaP

Wonderful! So glad they got

Wonderful! So glad they got it all!! You must feel relieved.

APny

So glad it's all behind you.

So glad it's all behind you. All the best on your recovery and the future!