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Yet another Newbie

missjaim76's picture
missjaim76
Posts: 7
Joined: Aug 2012

Hello everyone, I first wanted to thank you all for your help, I have been circling your boards for about 3 weeks now and all the information that you discuss has been very inspiring and has made my short journey thus far easier to deal with. A quick little background. I was sent for an ultrasound to find out why I was having pain in my left side and instead they found a mass on my right kidney. Well after a CT scan followed by a biopsy, This past Monday I recieved my diagnosis of Clear cell RCC on my 3.9 cm mass in the upper right pole. Just today I went to my urologist and he's scheduled me for a partial nephrectomy. Said he would rather not do it laproscopically based on the location of the tumor. When I asked him what kind of recovery time he told me 2 weeks??? That threw me almost more that the diagnosis!! I recently had a hysterectomy done Laprascopically and that was an 8 week recovery.. I work for the Post office as a mail carrier and with my job duties (driving a vehicle and the requirement to lift up to 70 pounds) When my doc heard those he changed the time for back to work in 6 weeks!! So I guess I am wondering if that might be remotely possible? If any of you could maybe give me some insight as to any changes after a partial nephrectomy. My concerns are if there is going to be any long term restrictions? I have researched about everything I can and realize its different for everyone but just some general ideas. Thanks so much!
Jaime

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

missjaim76,

It is always a pleasure to welcome new members and tell them they will be fine. From what you describe the surgery should be a total cure. How it compares to a hysterectomy will be for someone else to help you with.

As far as recovery I can give you some general thoughts. You are basically going to be grounded for a few weeks. By 4 to 6 weeks you should be able to do everything, but maybe not for 8 hours per day. As far as lifting 70 pounds on a regular basis, that may take a few months. As far as long term you should have all your stregth back in 6 months to a year.. An open surgery rather than laproscopic increases recovery as does a partial which involves more work for the surgeon than taking the whole kidney out. Occasionally some of the younger members like you have an easier times. Occasionally some of the members have had tougher recoveries.

One young mother in her 20's last year had such an easy recovery that she went on a roller coaster after 3 months. Even she reaized that was pushing it. Please wait until next summer for that.

My surgey was for a 4.2 cm tumor, 10 years ago before they were doing partials and I have had no treatment since. Remember after the surgery you can tell people yu had cancer, not that you have it.

Icemantoo

foxhd's picture
foxhd
Posts: 1923
Joined: Oct 2011

Hello missjam. Recovery takes awhile. Both physical and mental. There is some impact after you realize you feel like crap for several weeks due to an invasive cancer surgery. But it passes with time. Like waiting for your tomatoes to grow. It can't be rushed. It happens on it's own schedule. Lifting 70 # can be a challenge. But I bet any boss would allow 2 35# loads. Just heal up first. Fox.

missjaim76's picture
missjaim76
Posts: 7
Joined: Aug 2012

Thank you for the great information!! Thats the stuff I need to hear, I am very much looking forward to the "HAD" part! I do work for the Federal Government.. They have been pretty good about me having to be out for this length of time. I just had my other surgery in november and like I said was out for 8 wks. I already know that unless I was injured on the job they wont let me back until I am 100%, so I am a bit worried about what that will mean with this type of surgery. I guess I am just a bit rattled. I am mostly prepared to get this done and overwith!

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

First, I would get a second opinion regarding laproscopic surgery.

Second, with a open partial nephrectomy, figure 4-6 weeks at least.

I had a laproscopic radical nephrectomy oon June 19, and am just getting back to work now (I had complications in the wound healing).

This is major surgery. I was not be allowed to lift more that 10 lbs for 6 weeks.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Hi Jaime,
I would definitely have a second opinion. Under 4cm in the upper pole of the right kidney means it's not involving the collecting system and with a partial nephrectomy done laparoscopally your recovery time will be much less. Mine was only 2cm and I was not a candidate for a normal laparoscopic procedure so I was given a new procedure called Retroperitoneal laparoscopic partial nephrectomy. You might want to check into this. They use the same equipment only they enter from the side not even entering the abdominal cavity. It was a very easy recuperation and I'm left with five small scars on my right side none longer than an inch. You might want to check on this type of surgery. A guess would be the access to the right upper pole might be easier if you found a Dr. that did this. Isn't it great to catch things early? All the best.

Jeff

missjaim76's picture
missjaim76
Posts: 7
Joined: Aug 2012

This is already my second opinion, the first doctor told me he would also do an open. I am not entirely sure why though. I was a bit out of it with the first doctor and he did not have the best bedside manner so I was already looking for a second opinion. This doctor came highly recommended. I was a little bit more mentally present with the second doc and he told me that intense bleeding was a concern and was afraid that if he did laproscopic and the bleeding became an issue he would end up doing the open anyway, so he would rather start with the open and be able to deal with the bleeding more easily. I guess I bleed pretty freely. I really liked this doctor, I was very comfortable with him and he was very reassuring. I only have to wait a few days for this all to be overwith. Would it be neglective to not seek a third opinion and just go with what is already planned?

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

That's a tough question to answer. I think if you're happy with this doctor, you trust him and he has those concerns, then off you go and you're on your way to recuperating. I might ask him though about the Retroperitoneal approach. At least he'll know that you've done your research. Below is something to read if you like. Might help you make up your mind to ask the question. Either way at under 4cm you're gonna be fine. Good luck

Jeff

Retroperitoneal laparoscopic partial nephrectomy: surgical experience and outcomes.
Pyo P, Chen A, Grasso M.
SourceSaint Vincent Catholic Medical Campus, New York Medical College, New York 10595, USA. pyo40@aol.com

Abstract
PURPOSE: We present outcomes in 110 consecutive patients who underwent retroperitoneal laparoscopic partial nephrectomy performed in a 72-month period by a single surgeon (MG).

MATERIALS AND METHODS: Patients were placed in the flank position and the retroperitoneal space was developed using a balloon dissector. Hilar control was achieved with bulldog clamps. Tumor depth and extent were evaluated using intraoperative sonography. Perioperative data were assessed and outcomes were retrospectively analyzed at a mean followup of 23 months.

RESULTS: Mean patient age was 62 years. Mean operative time was 199.7 minutes and mean postoperative stay was 2.6 days. Mean blood loss was 260.0 ml and mean tumor size was 2.4 cm. Final pathological evaluation revealed negative positive margins in these cases. Of all tumors 63.7% were pathologically confirmed renal cell carcinoma. In 57 patients mean preoperative and postoperative creatinine was 1.1 and 1.3 mg/dl, respectively, at a mean of 20.6 months. In 47 patients with renal cell carcinoma who underwent computerized tomography or magnetic resonance imaging during the mean 23-month followup there was 1 incidence of local recurrence at 1 year. Conversion to open surgery occurred in 2 cases and laparoscopic radical nephrectomy was performed in 4. The rate of major complications was 4.5%.

CONCLUSIONS: Although it is technically challenging, the retroperitoneal approach to laparoscopic partial nephrectomy can be performed in a safe and timely manner with perioperative outcomes comparable to those reported for open and transperitoneal approaches. Furthermore, this approach allows the containment of blood and urine outside the peritoneal cavity. Our intermediate term results revealed excellent cancer control and preserved renal function.

adman's picture
adman
Posts: 261
Joined: Jul 2012

thank you for sharing :)

missjaim76's picture
missjaim76
Posts: 7
Joined: Aug 2012

Thank you MedScanMan, I will print this out and talk to him about it!

enae
Posts: 18
Joined: Aug 2012

I think you better have the open surgery. My husband had a laporascopic surgery with abdominal incision at the end to remove 10sm mass.He had one of the top urology surgeons in Washington and we thought it's better option since the surgery is less invasive. Now two years later he has mets at all surgical ports and confirmed by his nefrologist the seeding is a result of surgery.With open surgery you can minimize this risk, because surgeon will have better visibility while removing the tumor and less surgical ports where instruments can spread cancer cells. I know recovery may be longer, but that's the lesser of two evils.Also talk to your oncologist( see one before the surgery if you are not) if it's possible to be put on immune drug after to reduce the possibility of recurrence. And post op know that CT scans are the only sufficient method to monitor for recurrence, because my husband had only chest Xray and abdominal ultrasound last year and it seem they missed to detect the mass on his abdomen. Good luck with the surgery and know that like many people on this board this may be the end of your ordeal.

Love
Ena

nyc_girl
Posts: 26
Joined: Apr 2012

I had very good results with open surgery for my partial nephrectomy 6 months ago (RCC stage 1, grade 3). I am 43 years old and otherwise healthy I only spent 2 nights in the hospital. No surgical complications. I was feeling pretty good at 6 weeks. Went back to full physical activity at 12 weeks. Give yourself plenty of time to recover. Good luck!

patsy53
Posts: 2
Joined: Sep 2005

Had a radical surgery to remove 13 cm tumor in 2001. Open best, according to the Urologist, rather than chopping it up to remove it laproscopically. Supposedly less chance of leaving anything behind or missed. Heh. Lasted 10 years and RCC came back with a vengeance, even with an "open".

Do what's best for you and get a Cat scan (or better yet a PET scan - they detect stuff Cat scans miss) and bone scan of your thorax 5-8 years after to see if anything comes back. X-rays only detect larger tumors, if they recur. They are also cheaper. I did the x-ray routine, but no Cat scan and wasn't encouraged to do so, so now dealing with stage iv kidney cancer and a crippled right arm, because that's where the cancer metastasized - in the bone, besides in my lungs and liver.

Life is short. Ask a lot of questions.

Regards

DAR

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

Dar,

I try to stay away from critizising doctors as each doctor knows their patient better than us laypersons. However not having anything other than xrays especially with a larger tumor than a high percentage of most of us is not only gross negligence, but incompetent and if not criminal. Even I with a small 4.2cm tumor had CT scans every year for the first 5 years and then Ultasounds of the kidney for the past 5 years.

In your bio you blame the Canadian medical system for this. It could however have been an incompetent doctor who is responsible. You also warn that Obamacare could cause this probleh in the States. I would hope that the new Affordable Care Act will make insurance, surgery and drugs more availablr to Americans with RCC who can not currently acess these because they can not currently afford insurance. I also hope that this kind of follow up for RCC is the exception rather than the rule in Canada and that my Canadian friends to the South (Detroit is in fact North of Windsor) will be more vigilant in their follow up care for RCC.

Dar, I hope that your experience will be a needed warning to all of us to be more vigilent and to ask questions regarding our follow up care.

Icemantoo

missjaim76's picture
missjaim76
Posts: 7
Joined: Aug 2012

You have all given me alot to think about!! I had not given my brain a chance to consider the seeding or Mets risk involved with the surgery. I am really trying to not go into this with my head in the sand but the more I hear and read the more scared I am! Every situation is so radically different that there really is no guarantee with one procedure or the other. I am going to just take this one day at a time and try to keep a level head and try not to get too overwhelmed. I think that is easier said than done!!

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

Jamie,

Cancer is a scary word. Surgery is scary. That being said coming into this with a 3.9 cm tumor suggests that your survival rate is somewhere in the 90 to 100% range.

Unfortunately there are bad outcomes out there. Most if not all start with a lot more baggage (size of tumor) than yours. Enae (her husband) started with a stage 3 diagnosis. Dar started with a 10.3 cm tumor and received follow up care that was absolutely sub standard.

You have 2 chances of finding youself in the middle of one of those bad outcomes. Slim and none and I am puting my money on none.

Icemantoo

adman's picture
adman
Posts: 261
Joined: Jul 2012

Missjaime76,

No question, the more data you absorb, the more chance of being confused on which direction to go. I'm sure most of 'us' on this board have suffered to some degree or another with this...I know I have.
I spoke to 3 DR's - by appointment ( in addition to few survivors ) and 1 DR by phone very early on who was more of an acedemic trying to educate myself with all possible outcomes. I can tell you, like business, there are no guarantees, and you have to go with your gut at some point. All the empirical data you can find there is some point where there is a leap of faith. To be completly honest, the doctor and approach I ended up taking wasn't my first choice. I weighed the evidence against the possible outcomes and chose the best of the 'worst' situations.

Sometimes a tie-breaker opinion can add a perspective to the other two opinions. This is what happened to me. He didn't say anything different, he just framed things in a different way that made my final decision more acceptable. Also, the more people you speak with the better questions you can ask when you get additional opinions.

I then prayed and said...Lord, please take this from me and take control and protect me.

I hope this helped.

God Bless!

missjaim76's picture
missjaim76
Posts: 7
Joined: Aug 2012

I have been doing alot of research for the last month, the day the mass was discovered. I have already gotten multiple opinions and am fortunate to have a relative that is the office manager for a Nurological Oncologist. She is in another state so by phone she has been helping me to make educated decisions along the way. I am just so afraid of making a decision that I will regret later on. I feel like so much of this is out of my hands and at this point all I can do is pray that this surgery will be the end of it. Thank you all!

missjaim76's picture
missjaim76
Posts: 7
Joined: Aug 2012

I have been doing alot of research for the last month, the day the mass was discovered. I have already gotten multiple opinions and am fortunate to have a relative that is the office manager for a Nurological Oncologist. She is in another state so by phone she has been helping me to make educated decisions along the way. I am just so afraid of making a decision that I will regret later on. I feel like so much of this is out of my hands and at this point all I can do is pray that this surgery will be the end of it. Thank you all!

foxhd's picture
foxhd
Posts: 1923
Joined: Oct 2011

This is serious stuff as you are obviously learning the lesson well. I'll add a small comment and that is, Whatever course of action is chosen, don't spend any time thinking about "What if?" Move forward and do not waste valuable time thinking about the past.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Hi Jaime,
I had an open partial nephrectomy on my right kidney (5cm mass) in December of 2011. Eight months later, I'm still not 100% but I feel pretty close to normal, whatever that is! I'd say you're looking at 8 weeks before you're back at work full time. It will take time and be sure to give yourself time.
Since you mention driving as your job, driving has been one of the most uncomfortable things for me in recovery. My 5 inch incision is directly under the bottom edge of my ribcage and the 2 seem to battle each other when I'm in a seated position. It's still somewhat uncomfortable, but much better, today.
I wish you luck and a quick recovery.
Take care, David

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