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Open Partial Nephrectomy on a Cystic Renal Cell Carcinoma

lobbyist0724
lobbyist0724 Member Posts: 471 **

Hi all, just want to share my story with everyone here.

I was diagnosed with a complex renal cyst on my left kidney with the size of 3.2 by 3.6 cm during an unrelated ultrasound. Later CT confirmed that it is a 3.4 cm Bosniak Category III cyst, my family doctor referred me to the specialist. My urologist/Surgeon said based on the CT result, the size and the location of the tumour (deeper), there awere only two choices, either to monitor it or have it removed. His recommendation is to remove it completely since I am younger and he believes that it is likely cancerous in my case. I agreed to go ahead with the surgery. He also suggested the best way to save the kidney and ensure all of the cancer cells are removed is to do an open partial nephrectomy (he specializes in advanced surgery and I later found that this is the gold stardard for my specific case).   I agreed with the approach as well. 

Just had the surgery about a week ago, the surgery was uneventful (because I was sleeping). I had no complications (I had prepared for the surgery for 6 weeks, eating very healthy, exercise 30 mins daily and lost 15 pounds before the surgery to minimize the chance of complications). My incision is about 6 inches long on the left side of my flank. About 30% of my left kidney was removed, was on liquid for 2 days. The pain was bad especially on the first few days, my suggestion is to make sure the pain is under control. Listen to your doctor and nurses when they ask you to take pain killer and/or get up and walk. Since I found the key for recovery and reduce the pain is to move and walk. It's amazing that once I get up and start walking, the pain level decreased tremendously! But the process of getting up the first time was really painful (which lasted 5 mins only).

Discharged after 3 days and I am getting better day after day.

Now looking back, If you ask me was the surgery scary. I would say not at all, it is very routine and is all about professionalism. The most scariest part was the waiting, the unknowns. The pain is bad but manageable, make sure you take the pain killer as suggested, do not wait till the pain becomes unbearable! Again, WALKING is the key.

Things I wish I had known before the surgery:

1. It doesn't hurt to have a catheter, it feels strange but not too bad and it doesn't really hurt to have it taken out either (pain for one second). 

2. Same with the drainage tube, it felt weird coming out and but again, no pain at all when the nurse removes it. 

3. The staples doesn't hurt at all and again, no pain at all when they were being removed by my doctor.

4. Every day you will feel incrementally better than the one before it. By day three in hospital I probably could've gone home. 

5. There will be strange numb spots all over the place, mine are between my incision and my belly button. The feeling is starting to come back a little.

Pathology Report:

I just had my first visit with my doctor last week, he called me right after he got my pathology report weeks ago but this is the first time I got to sit down with him to talk about the detail. The report says it is a Renal Cell Carcinoma with Cystic Component/Change, Clear Cell type. It is pT1a, grade 2, smaller in size compared to CT and US, measured 3.2cm vs 3.4 cm and 3.6 cm. No lymph node, no met, no necrosis, no vascular invasion are mentioned. The tumor was deeper then he thought but he was able to remove it with negative margins, but the clearance is very small at the bottom. To reassure me there is no recurrence, he wants me to do abdominal ultrasound, chest X-ray and blood work every 3 months for the first year, he is not considering CT in my future follow up at this point.

Supplement:

I am currently taking Fucoidan and AHCC as a supplement just to boost my immune system after the surgery (I informed my specialist about it). I have read a lot from the forum and learned a lot from everybody. I am amazed how everyone has been coping with uncertainty and battling with this disease. Hopefully, I will learn how to put this behind and live my life to the fullest. At least, the RCC reminds me to live by the moment.

Wish all of you stay healthy!

Carmen

Comments

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited October 2016 #2
    Good reading

    Hi Carmen,

    Congratulations on your good news and thank you for your post. It was exactly what I need to be reading right now.

    I have just had a 5cm mass found on my right kidney so I will probably be repeating your experience some time soon.

    Did the doctors ask you to lose weight before the surgery?

    Steve.

  • Footstomper
    Footstomper Member Posts: 1,237
    edited October 2016 #3
    Excuse me?

    Great posts Carmen. But can I just disagree a little about the catheter?

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited October 2016 #4

    Excuse me?

    Great posts Carmen. But can I just disagree a little about the catheter?

    Thanks...

    Yeah... Not looking forward to it...

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited October 2016 #5

    Nice meeting you

    Doctor only ask me to try to stay healthy and I was the one asking will doing more exercise and having a better BMI help. Just want to prepare my body for the surgery. My doctor actually said that I am a perfect candidate for a surgery...not sure should I be happy about it :)

    I also came across a Surgical Risk Calculator created by the American College of Surgeons where surgeons use it to evaluate the risk of the surgery.

    http://riskcalculator.facs.org/RiskCalculator/

    And here is a very useful site in Canada, where you might find it useful as well.

    http://www.kidneycancercanada.ca/for-patients-and-caregivers/

    Last recommendation, the week before the surgery, it might be wise to wear a mask to avoid catching a cold or flu since even minor cold can induce the chance of having complications. I am sure you will be fine, the waiting and imagination is 100x worse than the surgery itself. 

    Best wishes, Carmen

    Spring time here

    Thanks for the links, I will check them out.

    Steve.

  • lobbyist0724
    lobbyist0724 Member Posts: 471 **
    edited October 2016 #6
    :)

    To be honest, that hurts a lot, even though it doesn't last. I asked the nurse why did she tell me it doesn't hurt before she removed it, she said pshychologically it will make patients feel less of the pain :) Since Steve is aware of it, then yes, it hurts Cool

  • Footstomper
    Footstomper Member Posts: 1,237
    edited October 2016 #7
    Catheter

    Dont worry about it Steve. It goes in while you're out (if you know what I mean). It was certainly a great fear of mine, but as with everything else to do with this disease its nowhere near as bad as you fear its going to be.

  • donna_lee
    donna_lee Member Posts: 1,018
    Like Stomper said, "what planet were you originally from?'

    Catheter: Hurt.  Drain tube: Hurt.  Staples: all 63 on a 14 inch incision hurt like H...  I've done some roofing, and it felt like ripping shingles off the roof.  They started under my right arm pit and went to 3" below the Navel.  The following removals of mets made the lower end go to the bikini line.  Faint scars, faint memories.

    The path report looks good and I wish you well on your cancer survivor journey.

    donna_lee

     

  • Steve.Adam
    Steve.Adam Member Posts: 463

    Catheter

    Dont worry about it Steve. It goes in while you're out (if you know what I mean). It was certainly a great fear of mine, but as with everything else to do with this disease its nowhere near as bad as you fear its going to be.

    Beautiful experience

    I will start telling myself how great it's going to feel.

  • lobbyist0724
    lobbyist0724 Member Posts: 471 **
    It is worth it to have the pain

    Thank you Donna. Luckily, I felt no discomfort or pain from the drain-tube at all. Can't imagine how long did it take for a 14 inches incision to heal.

    One thing that ease my mind before the surgery, is that I asked a doctor during my pre-admission visit; concerning about side effects and complications. He said, the most important question you should ask youself is "Do you need the surgery", if so, don't worry about it and the team will take care of me. which is so true.

    Carmen

     

  • lobbyist0724
    lobbyist0724 Member Posts: 471 **
    Nice meeting you

    Doctor only ask me to try to stay healthy and I was the one asking will doing more exercise and having a better BMI help. Just want to prepare my body for the surgery. My doctor actually said that I am a perfect candidate for a surgery...not sure should I be happy about it :)

    I also came across a Surgical Risk Calculator created by the American College of Surgeons where surgeons use it to evaluate the risk of the surgery.

    http://riskcalculator.facs.org/RiskCalculator/

    And here is a very useful site in Canada, where you might find it useful as well.

    http://www.kidneycancercanada.ca/for-patients-and-caregivers/

    Last recommendation, the week before the surgery, it might be wise to wear a mask to avoid catching a cold or flu since even minor cold can induce the chance of having complications. I am sure you will be fine, the waiting and imagination is 100x worse than the surgery itself. 

    Best wishes, Carmen

  • lobbyist0724
    lobbyist0724 Member Posts: 471 **

    Beautiful experience

    I will start telling myself how great it's going to feel.

    No worry

    The bright side is that it only lasted for a second or two!