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Hi guys from Brisbane Australia

piercedmumma
Posts: 7
Joined: Jul 2011

Hi guys

I had 2/3 of my stomach removed as a weight loss measure (sleeve gastrectomy) in August 2010. I had incredible pain in the tummy and went to the ER thinking something was wrong with my tummy on May 27, 2011. My vitals dropped very low and they put me in for the CT urgently as they believed I was bleeding internally. Anyway, all was clear with the tummy, I just got dehydrated.

But the doctor said my kidney was not clear. WTF?

I had a 5cm tumour found incidentally on my right kidney during the CT scan on 27 May 2011. By the 29th of May, the urologist and radiologists had said 80% the tumour was a cancer, so the kidney was to be removed. Very shocked and scared considering the original reason I needed a CT scan was not related too the kidney at all. Within 2 weeks, I was in for my radical nephrectomy. Talk about fast moving.

Anyway, pathology came back that the cancer was a renal cell (clear) carcinoma, grade 2. The tumor was larger than first thought but was contained within the kidney which was good news.

The sad news is, they have said that VHL syndrome (von hippel something) needs to be connsidered as I am 32 and have no other problems, signs or symptoms as to why this cancer formed. So we now need to work with a geneticist to see if I have VHL which is a genetic disorder that produces tumours kind of everywheere. The scary part is I have a 7 year old daughter so I want to know if I am VHL positive as she will need to be tested and monitored also. Does anyone know much or have VHL?

Well, recovery is SLOW. I am very sore, and soooooo tired. Considering I cant eat alot of food either due to the sleeve, I kind of wear out of energy very quickly.

I havent gone back to work as yet as I am no where near ready for it.

I wanted to know, does anyone else have incredible back pain since the nephrectomy? I have the most horrible ache in my back, up where my ribs are, on the right side. Is this just muscle? I dont want to live with back pain either!

I just wanted to pop in and say hi, and ask the back pain queestion.

Hope to talk to you all soon.

N

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

It is very common to find these kidney tumors while getting a ct scan for something else. In fact, I think statistically that IS the most common way they are found. You and I both had weird abdominal pain that brought us to that ct, so maybe that original weirdness was a blessing in some way.

I had my surgery June 13th, and while I am down to half a pain pill a day, I could really use more. My ribs and back and kidney area are still very, very sore. Sometimes the stabbing pain starts and makes me cry. I'm looking forward to the day when I wake up pain-free.

Does that sound familiar?

I haven't heard of VHL, so do keep us informed.

piercedmumma
Posts: 7
Joined: Jul 2011

Oh yeah. Familiar indeed.

Im off work for at least another month. So im hoping in that time, I can get better.

Yeah the pain you descibe is exactly the same! Ribs, around the wound/ scar and back.

What did your pathology come back as?

piercedmumma
Posts: 7
Joined: Jul 2011

Oh yeah. Familiar indeed.

Im off work for at least another month. So im hoping in that time, I can get better.

Yeah the pain you descibe is exactly the same! Ribs, around the wound/ scar and back.

What did your pathology come back as?

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I'm guessing by the dates in your original post that we had surgery about the same time. For me: June 13th. That puts us both at the 6 weeks post-op mark. Mine was an open surgery (not laproscopic). Recovery for open abdominal surgery is usually 6-12 weeks, so we're just barely in the zone. I think the pains we're still having are pretty normal. I've been on half a pain pill for a week, and today I tried to go without one at all. It has NOT been comfortable, but I muddled through. Supposedly, recovery from laproscopic is much shorter.

I know my directions said, however, that if I got new pain or unusually strong pain, I was to go back to my urologist, who was my surgeon. I did have horrible, new, stabbing pain several days ago, so I have an appt for in the morning. But now I feel kinda silly b/c that pain is gone. Oh well. I'm sure it's not the first time that's happened. Today it's just my back that's aching, but it feels "normal" post-surgical pain.

My pathology came back as just less than 2 cm tumor, renal cell carcinoma (clear cell), stage I-II.

MrMark757's picture
MrMark757
Posts: 4
Joined: Dec 2010

I had my right removed. Hand Assisted laparoscopic Nephrectomy. Can't say I had any back pain.

piercedmumma
Posts: 7
Joined: Jul 2011

So now Im not sure whether to see doctor (dont need to see urologist until December) for this back pain. I just sneezed and nearly fainted from the pain, through the scar and through to my back.

Maybe a physio will be able to help?

Anna Bery
Posts: 19
Joined: Jul 2011

My mom was diagnosed with stage IV kidney cancer and felt great after her kidney was taken out. HOWEVER, 11 months later she started to have a terrible back pain. The pain was untreated for like 3 months because mom was in between treatments.
Anyway, what I found out after talking to many specialist is:
1. GO to a pain management specialist if your back pain does not improve;
2. Get a back MRI. An oncologist who specializes in kidney cancer told me that once kidney cancer spreads to bones CT scan and bone scan will not detect it, ONLY MRI. Mom's CT scan and bone scan did not show anything in her back while she was having terrible back pain.
I hope it helps.
GOOD LUCK

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Hey N, how are you doing? Is your back any better? I've recently taken a turn for the better, and I was hoping the same would be true for you.

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