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Hello, Recent Nephrectomy Patient for RCC

Shawn_PGH
Posts: 3
Joined: Mar 2012

Hello,

Thought I'd join up and read about the journeys that others with similar situations to my own have taken. Honestly, I guess I'm hoping to see and hear from long time survivors who've had renal cell carcinoma like mine.

A little background on me- in November of last year, my Nana (grandmother who raised me) was diagnosed with metastatic melanoma. She was 81 years old. I was with her every day but three for the fight. She passed away on Feb 10 of this year. It was awful. She was in so much pain- it was horrible to see.

A little over 2 weeks later on Feb 26 my wife made me go to the ER for a really high fever and gastric problems. While there, they ran a CT scan and found that I had a large tumor on my left kidney. The radiologist came to see me that night and told me flat out, "you have kidney cancer". He was convinced based on the size and shape of the mass (and he was right). In light of what we'd been through recently, I was floored. I'm only 30 years old. I NEVER thought something like this would happen to me at my age.

I spent that night in the hospital bed on my phone reading about kidney cancer. After meeting with all the doctors, I had my left kidney removed via laporascopic surgery on Feb 29. It was renal cell carcinoma, clear cell type. The doctors staged it as Stage 1B. The tumor was Fuhrman grade 2. It was 5.8x4.6x4.3cm in size. The tumor was limited to my kidney with no evidence of capsulare or lymphovascular invasion.

I had a myriad of other scans done before the surgery- MRIs, CT scans, ultrasound, X-ray, the works. They found a 2mm mass on my spleen that they believe is a hollow cyst and a 2mm mass in my lung that they also believe is benign and not related to the RCC.

My recovery from the surgery has been going well, with the major exception of me being absolutely terrified of the cancer coming back, spreading, and my persistent fear that the two small masses on my spleen and lungs are something bad. I guess seeing my Nana in so much suffering and dealing with this all myself so soon afterwards has me reeling.

So...hoping to hear from other survivors, the longer term the better. Looking for reassurance I guess. Anyone else have minor "spots" show up on scans in the lungs, spleen, or elsewhere that were benign? Any LONG term RCC survivors here? I like my life; being only 30 and having had this has really thrown me for a loop.

Thanks in advance for any words or insights you can offer.
-Shawn

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

This much I do know tumors are very dense and cyst are fluid filled,so when an image of a cyst appears it is more transparent where cancer tumors are more solid,hope I did a good job of explaining,and yes it is common for all of us to have these harmless cyst,I think you the odds are with you Shawn so good luck.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Shawn,
Sorry to welcome you to the club. A few years before I was diagnosed with kidney cancer, some spots were found on my lungs. I had CTs every six months for 18 months. The CTs showed no change and I was told they were likely scars, possibly from being exposed to TB at some point. Anything that shows up on CT scans is going to produce anxiety. But try to think positively because you need to reduce the stress in your life now. More than likely they will prove to be insignificant. Your kidney cancer was caught early and you have an excellent prognosis for long-term survival. As far as long-term prognosis goes, this looks like a job for Iceman! He will be here soon to encourage you, I am sure, as he has many others over the years.
Regards,
Mike

Shawn_PGH
Posts: 3
Joined: Mar 2012

Mike,

Thanks- that's the kind of stuff I was looking to hear. It's good to see that others have had spots in other areas that have turned out to be benign. I'd probably be a lot less anxious had the spots on my lung and spleen not shown up.

Thanks man
-Shawn

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Shawn - I had a 2.5cm, they tell me vascular vein invasion, grade 2, clear cell, so they put me at stage 3, pt3a, with a 40% recurrence probability - but my situation is so rare, they don't really know.

Try using some nomograms (google it), you will find many calculators. That said, prognosis on 1B, is better in terms of "statistics", so let me ask you this - say 80% are fine, no recurrence, and 20% - there is recurrence, do we really know, which side an individual is going to fall on ? I mean - there are those 20% for whom it comes back. So those stats work for populations, not individuals, and yes, there is a higher probability you will be in the 80%, because is 80% is > than 20%.

So, now, regardless of numbers, anxiety becomes destiny, for a while at-least. Whether we can or not, we have to live with it. I am anxious, and I can't control it. I am scared - sick. That's the flat out truth. I know you want assurance, but anyone who provides you assurance, is being "nice", because none of us "know'. I wish us all well, you are 30, I am 42, no more deserving of cancer for the 12 years I have on you.

There are clinical trials you can check out - www.cancer.gov - but that's all debatable at this point. No one knows how these drugs works in an "adjuvant" setting.

The practical advice I have gotten is - eat well, rest well (I didn't say "sleep" well, but if you do, even better), have a grounding (religious , spiritual) belief, good support network, do basic research, we all share - and from component pieces of information, we try and see the larger picture - if there be one.

Find out about gene testing, find about bio-markers, come back and share what you learn. I want to know what they tell you. I am trying to find out as well. Get some self help stuff, there is a lot out there. I think the other guys can help you as they have helped me. I find helping others, helps me. Don't ask me how, or why, it just does.

You may directly email me through the CSN network, or post openly here.

You have my best.

Raj.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Shawn,

I'm the old guy here who trys to lift everybody's spirits. My surgery was 9 and 1/2 years ago at age 59 for a 4.2 cm little rascal. I have been doing fine since although for certain things I wish I was a little younger. While there may be worry for a few years chances are that you will do just as well if not better not worrrying until there is something to worry about. At least that is my philosophy.

Best wishes,

Icemantoo

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

That part I think you are right about "chances are that you will do just as well if not better not worrrying until there is something to worry about" - question is - "how" do we get there sir ?
Raj.

Shawn_PGH
Posts: 3
Joined: Mar 2012

Icemantoo,

Great to here that you've got almost 10 whole years, cancer free and healthy. One of my biggest fears is that I want to live a long life- and having this so early seems to give the cancer a lot more time to come back on me in my mind.

It's really nice to hear from long term survivors like you. Glad to hear that you're well and thanks for commenting.

-Shawn

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Listen to the Iceman. Worrying requires time and energy which could be spent on positive thoughts and activities. There is no point to dwell on that which you can't control. That is life lost. It is not recoverable.

There is a story about going on a picnic in a beautiful field. Why would you go and sit next to the only pile of dog crap? There is a whole world available to enjoy. Don't let the negative consume you.

Peggyz
Posts: 6
Joined: Jun 2011

Dear Shawn and all,
I am a 8 year survivor of Stage IV RCC, with a large 9x10cm tumor and hundreds of mets in my lungs. Thanks to High dose InterLeukin 2, I have been free of any metastases for seven and half years. Since you are so young, you should learn about this option, along with others. You may never have more problems, but will always need to be vigilant.

In my case, I did have some "blips" on my CT scans, which I now have every six months. I was told that we all have things from time to time, and that I just need to be watching, which paid off, as these blips are not growing, and are likely scars internally.

The best advice is to be working with some one who has experience with this disease, and is willing to listen to your concerns, while you develop an understanding of all your options. A rare disease requires you to have a partnership with your doctor, not to sit back and hope he/she knows it all.

Peggy Z

j_rod
Posts: 125
Joined: Mar 2012

I have not had my operation yet. But I had a biopsy, so I know the type of cancer I have. It is papillary. Like you, I had horrible abdominal pain. The ct scan picked up a "worrisome mass" on my kidney, and a "mass in the lung - possibly a lymph node". My doctor told me to get the lung checked out first. I went to a pulmonary doctor. He ordered a pet scan. Luckily, "nothing lit up". However, there was a shadow in my left lung which was new since I had had the ct scan. So he decided to get a closer look and did a broncoscopy and lavage (washing the lung with a saline solution and sucking the fluid out and subjecting the fluid and cells to tests to determine if there are any cancer cells). Again, all clear. I got a phone call from the nurse practioner saying 'all is clear'. Negative for cancer. Then on to the urologist. A biopsy showed papillary cancer so they referred me to Chicago for a lap robotic partial on the right kidney. The operation is in just over a week from now. In the meantime, Chicago had me come in for pre-op xrays and blood work. Blood work was aok. Xray showed the lung to contain 'most likely a pericardial cyst'. Told is might be hereditary. Told nothing to worry about. Hope this helps.

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