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

KrisG's picture
KrisG
Posts: 8
Joined: Jul 2017

Hi.

I've known about my Left Kidney mass since the end of March...when it was incidentally discovered. It's taken this long to finally get an answer as to if it was benign or cancer. Multiple tests, waiting for insurance approvals, 1st Needle Biopsy missed tumor, more tests, waiting, waiting, waiting. So with the 2nd CT Guided Biopsy...the Radiologist hit the mark & obtained the sample.

Received telephone call from my Urologist yesterday saying that it was indeed Cancer, stage or grade 1. He didn't get into any other classifications. He did say that it was caught early, and since it's still small the outlook is very good. He's pushing for the Cryotherapy to destroy the tumor vs a partial nephrectomy. Given my age (62) & body type, he feels that I'd do better with the Cryo rather than the major surgery. I see another Urologist within their practice who specializes in Cryotherapy. My Doctor is also the area's #1 guy for Robotic Surgery. I've read some of the postings about the side effect people have had with the cryo, it's making me question it. 

While I'm going to keep my appointment on Tuesday with this other Dr, I'm seriously considering obtaining a Second Opinion from the Doctors at UW Madison...at their Cancer Center there. I'd like to hear other possible options too. Even though I live in a large urban area (150K), we only have one large Urological Clinic. Therefore, my resources are limited here. Or perhaps someone knows of someone in the Chicago area that specializes in cutting edge treatment for RCC. Both Chicago & Madison are somewhat equal in distance from me. Although Chicago traffic is worse than Madison's. LOL.

Of course I have to take into consideration as to my insurance benefits too.

Left Renal Mass, lower inferior pole 2.0 x 2.1cm.

Undecided

 

 

icemantoo's picture
icemantoo
Posts: 3230
Joined: Jan 2010

Kris,

 

In my day 15 years ago there were no cyros or partials. They just yanked the whole kidney out. The more they take out the more certainty that surgery will be the final treatment. While it is small you have time for a second opinion, but you do want to get it behind you. I too have read some postings where the cyro did not work as planned. There is no right or wrong answer. Get the second opinion and make the decision you are most comfortable with.

Icemantoo

Mighty Frog's picture
Mighty Frog
Posts: 140
Joined: Jul 2017

Hi! Kris!

Today is my 10th day from surgical. i had 4.6cm partial kidney removal. From my info, cryotherapy (cryoablation) and radiofrequency ablation (RFA) both are short term only. There are high chance or recurrence which later need to remove the kidney. Check the link below, they explained in details of each treatment options, their pros and cons of each treatments. But for laparoscopic surgical you need to get a skillful and experience surgeon. 

https://www.youtube.com/watch?v=493RFA_tA1I&t=445s

Hope can help you.... All the best to you...

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

My urologist (Stanford University Hospital and Clinics) told me that cryo and RF ablation techniques are sometimes used on lesions under 4cm.  He said that the success rate for such treatment was around 90%.  It's recommended when the patient, for whatever reason, can't tolerate surgery.  He said that the partial or total neph was still the gold standard.  In lesions your size (similar to mine that turned out to be 1.7cm), the success rate is 99+%.  I was (and still am) in goo dphysical condition and he recommended I have the surgery.

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Mine was 3.5 cm and my surgeon/oncologist at Sloan Kettering also said the same thing as Bay Area Guy's. That surgery is the gold standard with cryo reserved for those who are high risk for surgery, such as much older than you and/or with compromised health. I was the same age as you when I had my partial neph. No problems at all. Now if you have other health issues which we're unaware of that's a different story. But do get an other opinion for sure.

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

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

Rockspin
Posts: 77
Joined: Aug 2017

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.

ewizd
Posts: 2
Joined: Jul 2017

Hi everyone, I am new here. I've been reading all the posts with great interest. This morning, I wanted to speak to the matter of age and kidney surger. I am 67 and had my left kidney removed laproscopically on July 14th. I am no athlete, and am somewhat overweight. My specialist still felt this was the best clinical solution and that I was a good candidate for this surgery.My tumour was 4.5 cm. 

My first few days following surgery were rough, and I have had some tough days since. However, the doctor is quite pleased with my progress. I expect the recovery may take me a bit longer that someone younger. I do tire easily, but it is early days yet. 

icemantoo's picture
icemantoo
Posts: 3230
Joined: Jan 2010

Ewizd,

I was a youthful 59 when I was nephed 15 years ago.  You should be back to a slow normal in a few months. At 4.5 cm surgery was the right choice. Not fun, byt it beats the alternative.

 

 

Icemantoo

ewizd
Posts: 2
Joined: Jul 2017

Thanks for your reply. I am not sure what is reasonable to expect of myself right now. I walk a bit everyday, and take the stairs without strain. Still, I get dizzy off an on, and need naps. Thanks for the encouragement. I tlike the term "slow normal."Smile

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I can only speak for myself, but I would definitely get a second opinion.  If nothing else it'll give you peace of mind down the road that you made the best decision you could based on information given.  You definitely have time, since that bugger is quite small and they are typically slow growers.  I wouldn't hesitate to go to UW Madison.  And relatively speaking, Mayo isn't that far away either.  There certainly are areas much more remote than Madison.  Personally, not a fan of the biopsy thing or cryo, but that's just my opinion (and I'm not a doctor), so take it for what it worth....my 2 cents.  lol

Best wishes and keep us posted.

Donna~

KrisG's picture
KrisG
Posts: 8
Joined: Jul 2017

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)

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

so my personal opinion is to go to either of the other options.  My family has had 3 very bad experiences with Loyola and in my book, 3 strikes, you're out!  Not even an option.  And I agree, it's cancer, get it out!!.....yesterday.  :-)

Way to go on your weight loss....good Lord 41 lbs?  That's awesome self-control.  What's your secret?  

Keep us posted on what you decide to proceed with.

Donna~

KrisG's picture
KrisG
Posts: 8
Joined: Jul 2017

Thanks again for the encouraging words.

I have a appointment this coming Monday the 18th at Loyola (I wish I'd seen your post first before choosing them. Live and learn.) My insurance has authorized a consultation only...no treatment. Just picked up copies of my scans & biospy slides today. 

I'm still of the opinion that the Tumor needs to come out. Period. Still not sold on Cyro treatment.

Do I want to lose a portion of my Kidney? No, I'm looking forward to having major surgery (whether it's Robotic or open...up to the surgeon at that time) But leaving the Cancer inside me just seems wrong on all levels. No matter if they "freeze" it or not. My confidence in them hitting the mark again for the Cyro is quite low since they missed the mark with my first Biopsy. 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

I'm with you. I'd opt for surgery over cryo, personally. All the best to you whatever method you decide to go with!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

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.  

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

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

BoondockSaint's picture
BoondockSaint
Posts: 241
Joined: Mar 2017

Angie.......My wife was in a similar situation as you back in March. Her tumor was 3.5cm and our surgeon didn't even entetrtain the thought of cryo. His opinion was, at that size it was too much to get and be successful with it.

I'm glad you are doing well

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Thank you Boondock!  I am still sore but have been working from home all week!  Never did find out what was causing the pain on the left but whatever it was it saved my life!  I hope your wife continues to do well!

bmickowski
Posts: 7
Joined: Sep 2017

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

BoondockSaint's picture
BoondockSaint
Posts: 241
Joined: Mar 2017

Well.....we didn't really have to ask any questions so to speak because our surgeon went over everything in detail. From the whole process of the surgery itself to the recovery.

Now, with that said. Our surgeon, as well as many others it seems from reading the posts here seem to think that once they go in and get the little Hellion out, that's it. No need for anything else.

I'd at the least ask to be refered to an oncologist and to follow the protocol for follow up. My wife's follow up schedule is chest X-rays and abdominal CT every 6 months for 2 years then yearly thereafte to 5 years. After that I think we will on our own go to ultrasounds.

i would also request for the surgeon to go over and explain every detail of the pathology report. 

I sincerely wish your brother well and hope he has a boring and uneventful surgery and recovery. Keep us posted.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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

bmickowski
Posts: 7
Joined: Sep 2017

Angie where did you have your surgery. My brother was just diagnosied with at 3.5cm on his right kidney. We see surgeon in Sloan Oct 6

APny's picture
APny
Posts: 1949
Joined: Mar 2014

I had my surgery at Sloan. My surgeon (Dr. Russo) went over everything in detail so I didn't have questions. All the best to your brother.

couragehealth
Posts: 3
Joined: Oct 2017

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

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

 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's picture
Angie1496
Posts: 154
Joined: Sep 2017

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's picture
KrisG
Posts: 8
Joined: Jul 2017

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's picture
AnnissaP
Posts: 631
Joined: Sep 2017

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's picture
KrisG
Posts: 8
Joined: Jul 2017

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
Posts: 111
Joined: Nov 2017

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

AnnissaP's picture
AnnissaP
Posts: 631
Joined: Sep 2017

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

APny's picture
APny
Posts: 1949
Joined: Mar 2014

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

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