Open Partial Nephrectomy on a Cystic Renal Cell Carcinoma

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