5 weeks since surgery - still having trouble but getting better

KCFighter
KCFighter Member Posts: 50
edited March 2014 in Kidney Cancer #1
It's been 5 weeks since my surgery. I had decided to go for a total laparoscopic nephrectomy but when I talked to the doctor on the morning of surgery, he convinced me to allow him to try for a partial laparoscopic nephrectomy. He cut into positive margin so ended up taking the entire kidney anyway. After I learned he cut into +margin, I was very upset with him for talking me into allowing him to try for the partial. I will forever worry that he allowed the opportunity for cancer cells to escape or contaminated healthy tissue at the nephrectomy site with the cutting tool when he took the rest of the kidney out.

The morning of surgery is no time for a doctor to convince a patient to change their mind and some friends have suggested it is outright unethical because you're very volunerable & scared and the doctor took advantage of the patient trust. I do wonder if he really had my best interest at heart or if he wanted to practice doing a lap. partial neph. on me. There are very few doctors who are skilled enough to do these surgeries. While he's a skilled lap. surgeon, partial lap. neph. is relatively new to all surgeons.

I was EXTREMELY depressed about this for 2 to 3 weeks after surgery. As I've recovered & felt stronger physically, so has my spirit. The doctor told me that he is comfortable saying that there was no chance any cells escaped. However, the other doctor who took care of me while in the hospital (my doctor has been pretty much MIA since surgery) said there is a small chance. Who do I believe?

While I'll never forgive the doctor, I know there is nothing I can do about it now & so I am trying to focus on things I can do...such as finding a different doctor, eating organic foods, & trying to stay positive. Some days I'm more successful than others with that. I'm partly seeking a new doc because my trust has been shaken in my doctor to say the least but also because he's been unreachable since the surgery. While in the hospital, two of his colleagues took care of me. He came to see me once the entire time I was in the hospital. That was the day after surgery & only after I got extremely upset & demanded that he come to see me. I was stunned that he would just completely abandon me after surgery like that. I mean, I was told there was a small chance it wouldn't be cancer prior to surgery (which I now know it was). Also, I didn't know if he ended up taking the entire kidney or just part of it. ..shouldn't it be standard to come the next day to discuss what happened & what was found? Has anyone else experienced this type of treatment from your doctor? And if so, what did you do about it?

I've had quite a bit of abdominal tenderness & swelling. Is there anyone else who's had the laparoscopic surgery that could share how their recovery has progressed & any tips for healing? Afer my 1st day back to work (which was only 4 wks after surgery & at least 1 wk too soon) my lower abdomen formed these strange lumps/disformations that lasted until the next night.

Comments

  • nai53
    nai53 Member Posts: 6
    #2
    I just hit my one year mark and I can tell you that I am still looking over my shoulder eventhough things went well with my surgery. I looked at your cancer type and it appears to be a less aggressive form of kidney cancer (as compared to clear cell). I think the best doctor to get is the renal oncologist from a university. The run of the mill urologist just doesn't see past the surgery. The psychological part is by far the hardes part of the journey so far. We have to stay focused on a positive future. I tried the organic approach too, but somehow I found the junk food aisle at the store again. I guess I have hit the comfort zone of recovery. I have found that chatting with people in the chat rooms helps stay focused.
  • KCFighter
    KCFighter Member Posts: 50
    #3
    nai53 said:

    I just hit my one year mark and I can tell you that I am still looking over my shoulder eventhough things went well with my surgery. I looked at your cancer type and it appears to be a less aggressive form of kidney cancer (as compared to clear cell). I think the best doctor to get is the renal oncologist from a university. The run of the mill urologist just doesn't see past the surgery. The psychological part is by far the hardes part of the journey so far. We have to stay focused on a positive future. I tried the organic approach too, but somehow I found the junk food aisle at the store again. I guess I have hit the comfort zone of recovery. I have found that chatting with people in the chat rooms helps stay focused.

    Thanks nai53 & congrats on reaching the 1 year mark. That is great & encouraging. Did you have clear cell or RCC?

    I'm looking into switching to a Urologist who specializes in Oncology at a nearby Univ. I'm also checking into one of the Cancer Centers of America that is nearby. Someone recommended that to me. Looking at their website, I liked their approach. They seem to treat the whole person - looking at nutrition, emotional, etc...in addition to the cancer rather than the "cut out the cancer & see you in 6 months" approach.

    I am with you on the junk food. I just do my best to eat organic as much as I can to try to eliminate some of the toxins we seem to get as a standard in our daily lives.

    It's only been 7 weeks since surgery but each week gets a bit easier & I'm slowly getting my sense of humor back & am able to be more positive. This discussion group has really helped.
  • dleather
    dleather Member Posts: 11
    #4
    Dear KCFighter.

    Hi. I'm Don Leatherman. I was diagnosed with kidney cancer in 2003. I was dumb as a post about the entire cancer world and have learned a lot in the last 3 years. Mine was metastatic, i.e. spread to 4 other places. I'm sure you know by now how it spreads... through the blood stream. I had the grandaddy on my right kidney and the left lung, right lung, left leg and right leg cancers all started by a cancer cell being deposited there by blood circulation. If I understand my M.D. Anderson doctors correctly it would seem to me that it is a mute point about whether or not cells were released by the surgery. You've had cancer cells traveling through you brain, lungs, legs, liver, etc, etc, etc... ever inch of your body since the 1st day you got the cancer. The M.D. Anderson people are not just a place to get treatment for cancer. They are world famous for their research and they are working closely with drug companies developing chemotherapies. I discovered this when I went to a cancer survivors conference there last October. I really think your surgeon's "oops" had no real negative influence on your future. Of course, I'm no doctor but I have done a lot of talking to 'em in the last 3 years. I think the real hurdle for you is over. Did they scan your body to make sure it does not exist anywhere else? The key to surviving kidney cancer is to find it before it spreads. Once it "relocates" like mine did they say it is almost impossible to stop. For instance the M.D. Anderson doctors are presently working to kill my 10th tumor. So my advise for you would be to get a full body scan every year to make sure it has not surfaced somewhere else. Because, according to my oncologist, the blood could have deposited a cancer cell somewhere and the thing may sit there for who knows how long before it decides to start growing. It is indeed and mysterious world. I wish you luck my friend. I will pray for you. Take care.
  • dleather
    dleather Member Posts: 11
    #5
    KCFighter... Don Lman again. Sorry I forgot to tell you that I had laparoscopic surgery 2 years after kidney surgery. Laparoscopic surgery was to fix a hernia resulting from the kidney surgery. It took me three months before I even entertained the thought that I'd ever be normal again. Sometimes the old body just is slow to react. If you eat right and get a little exercise and drink lots of liquids you oughta mend really well. Listen to me, starting to sound like a doctor. Later...
  • KCFighter
    KCFighter Member Posts: 50
    #6
    dleather said:

    KCFighter... Don Lman again. Sorry I forgot to tell you that I had laparoscopic surgery 2 years after kidney surgery. Laparoscopic surgery was to fix a hernia resulting from the kidney surgery. It took me three months before I even entertained the thought that I'd ever be normal again. Sometimes the old body just is slow to react. If you eat right and get a little exercise and drink lots of liquids you oughta mend really well. Listen to me, starting to sound like a doctor. Later...

    Hi Don. I hope your treatment is going good. You sound like a very strong person so I'm sure you'll do well. I'm almost at the 4 month mark & am feeling much better. I have noticed my flank pain is back which makes me worry there's a recurrence at the nephrectomy site but it could just be the scar tissue forming internally.

    You are correct, cancer cells spread via blood stream. I haven't heard the theory that they've been crusing your body since the 1st cell developed. I've heard cells "can" escape and if they do then it is a matter of it establishing itself somewhere else & growing. From what I've read, the risk of that is greater depending on various traits of the tumor.

    Thanks again for your feedback. Hope you get a chance to send an update on how you are doing soon.
  • lbinmsp
    lbinmsp Member Posts: 266
    #7
    Think you sent me an email just the other day. So you're now almost 3 months postop and I hope you've found a doctor you can relate to. My urologist was completely up front with me from the start, gave me options, etc. He/we opted for an open procedure as he wanted to review all my internal organs by hand (even though all the preop tests/scans/x-rays showed no evidence of further tumor). I appreciated his approach and all went well. He has followed me personally every 3 months (initially) and then every 6 since the first year. He orders the tests/scans and blood work and reviews all of it himself and shows me the results. Bottom line, you've got to have faith in whoever you're seeing. Also, investigate everything on the internet. So much excellent information there. Some may be scary (statistics, especially), but knowledge is power - the power to ask questions, change doctors if necessary, and the power to just move foward. Remember, "Tomorrow is promised to no one" ... go out there and live your life! Good luck to you!
  • dleather
    dleather Member Posts: 11
    #8
    KCFighter said:

    Hi Don. I hope your treatment is going good. You sound like a very strong person so I'm sure you'll do well. I'm almost at the 4 month mark & am feeling much better. I have noticed my flank pain is back which makes me worry there's a recurrence at the nephrectomy site but it could just be the scar tissue forming internally.

    You are correct, cancer cells spread via blood stream. I haven't heard the theory that they've been crusing your body since the 1st cell developed. I've heard cells "can" escape and if they do then it is a matter of it establishing itself somewhere else & growing. From what I've read, the risk of that is greater depending on various traits of the tumor.

    Thanks again for your feedback. Hope you get a chance to send an update on how you are doing soon.

    Good news. Number 10 has finally stopped growing. Every trip to M.D. Anderson for nearly a year I got the same news... it's still growing, until 2 weeks ago. They said "no growth" since 2 months ago. The last time I got that news I was in remission 3 months later. Am expecting the same result this time. Good health to you my friend. Wishing you the best and will continue to pray for you.
  • jsriram
    jsriram Member Posts: 1
    #9
    lbinmsp said:

    Think you sent me an email just the other day. So you're now almost 3 months postop and I hope you've found a doctor you can relate to. My urologist was completely up front with me from the start, gave me options, etc. He/we opted for an open procedure as he wanted to review all my internal organs by hand (even though all the preop tests/scans/x-rays showed no evidence of further tumor). I appreciated his approach and all went well. He has followed me personally every 3 months (initially) and then every 6 since the first year. He orders the tests/scans and blood work and reviews all of it himself and shows me the results. Bottom line, you've got to have faith in whoever you're seeing. Also, investigate everything on the internet. So much excellent information there. Some may be scary (statistics, especially), but knowledge is power - the power to ask questions, change doctors if necessary, and the power to just move foward. Remember, "Tomorrow is promised to no one" ... go out there and live your life! Good luck to you!

    I an 60 yrs, Indian,male and had a laparoscopic partial nephrectomy on Sep 29th 2012 for removing a 3 cm isolated tumour. The doctor was abel to get a negative margin though we have to sign if for full nephrectomy as a just-in-case alternative before the surgery. Below is a collation of events:

    1)Admitted to Hospital on 27th for pre-op procedures
    2) 5 hr surgery on 27th ( I had 2 renal veins ) and ICU for 2 days. I had developed a breathing cramp which was very painful. Surgery pains were within limits.
    4) Shifted to a personal ward on 31st : Took morphine and other painkillers for 2 days to control the pain from breathing cramp. Began walking and eating.
    5) Epidural pain medication stopped on the 1st Sep and released from hospital on the 3rd.
    6) No medications at home barring antibiotics. Sleeping difficulties continue buter after sleeping only 1 -2 hrs a strech am able to sleep 4 hrs/stretch.
    7) Since today, 10th Sep, Have commenced walking doing about a consolidated 3 km / day over 5 attempts. Food is normal though less spicy . ALl other functions are normal.
    8) An occassional cough is a painful irritant - controlling that with steam inhalation and expectorant.
    9) The last dressing on my right is planned for removal on 13th Sep

    Barring the cough and some sleeping difficulties, I feel OK.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #10
    jsriram said:

    I an 60 yrs, Indian,male and had a laparoscopic partial nephrectomy on Sep 29th 2012 for removing a 3 cm isolated tumour. The doctor was abel to get a negative margin though we have to sign if for full nephrectomy as a just-in-case alternative before the surgery. Below is a collation of events:

    1)Admitted to Hospital on 27th for pre-op procedures
    2) 5 hr surgery on 27th ( I had 2 renal veins ) and ICU for 2 days. I had developed a breathing cramp which was very painful. Surgery pains were within limits.
    4) Shifted to a personal ward on 31st : Took morphine and other painkillers for 2 days to control the pain from breathing cramp. Began walking and eating.
    5) Epidural pain medication stopped on the 1st Sep and released from hospital on the 3rd.
    6) No medications at home barring antibiotics. Sleeping difficulties continue buter after sleeping only 1 -2 hrs a strech am able to sleep 4 hrs/stretch.
    7) Since today, 10th Sep, Have commenced walking doing about a consolidated 3 km / day over 5 attempts. Food is normal though less spicy . ALl other functions are normal.
    8) An occassional cough is a painful irritant - controlling that with steam inhalation and expectorant.
    9) The last dressing on my right is planned for removal on 13th Sep

    Barring the cough and some sleeping difficulties, I feel OK.

    Welcome to this support community, J. You seem to be in good hands and to be doing well.

    There is a lot of information about the stage you are now in on a thread entitled "Recovering from radical nephrectomy". I feel confident that you are a computer whiz and you might want to take a look at the stories in that thread at:

    http://csn.cancer.org/node/170619

    Keep well and please continue to keep us company here and share your experiences and your Indian wisdom with us.

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