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Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

I have been reading some of the blogs here and have found them very encouraging. I would like to thank everyone for sharing their stories.

I am a 57 year old and was diagnosed the end of March with stage 4 RCC.  After complaining to my GP about not feeling well, I went in for a chest x-ray where they found a node on my lung. I then went in for a CAT scan where they then found a 15.1 x 11.2 x 10.6 cm T2b, N1 carcinoma on the lower pole of my left kidney. I went in for a total left nephrectomy on April 9th.  They also removed 4 enlarge lymph nodes surrounding the kidney. Of course the pathology report came back stage 4 RCC and one of the 4 lymph nodes that was removed also showed kidney cancer. Both the kidney and lymph nodes were removed, so I was feeling pretty good about my prognosis. However, I still had that node found on my lung from the original chest x-ray. Could it be a primary lung cancer, or has the kidney cancer spread there also?

I went in for a PET scan before the scheduled lung surgery to be done on May 13th.  The PET scan showed that it indeed was a secondary cancer and not a primary lung cancer so I went in for a wedge section removal.  My medical oncologist called and was concerned that the PET scan indicated a lesion on my liver. I went in today for an MRI to determine if the kidney cancer has spread there. I see the lung surgeon tomorrow as a post-op visit and really don't anticipate any problems there. But on Wednesday the 5th I see the oncologist to get the final results of my MRI. She will then discuss treatments with me if the MRI does show the cancer has spread there.

Is anyone else going through this same sort of thing? How are the treatments with this possible diagnosis?

brad's battle's picture
brad's battle
Posts: 3
Joined: Mar 2013

Hello baaa-bs.. I am 48 year old male who has stage 4 RCC since last year. I had stage 1 in 2006 and had left kidney nephrectomy, which the docs hoped would get rid of it all, but in Feb. of 2012 they found that the cancer had spread to the right chest wall. I have been on an oral chemo called Votrient  for almost 14 months now, and it has stabilized my condition..No new tomurs, and no enlargement of current areas either. I am glad they were aboe to operate on the areas where yours spread. That is not an option for me, and radiation isn't either.. Too many tumors to isolate the radiation on a single one.. Make sure you ask about all options and keep fighting!!

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

The usual suspects will come aboard soon and they will have a better answer for you than I do. I'm no expert but the dimensions of your kidney tumor seem a bit on the large side. Add to that the lymph involvement and if the lung section pathology is certain for RCC and the liver lesion MRI comes back suspicious, your Wednesday visit may require some hard decisions.  High dose Interlueken 2 will be a possibility, as will other solo drugs and combinations.  Several people on this board are familiar with drug trial protocols and will have ideas.  Your stated facts would seem to indicate some advanced disease but there are folks here who can tell stories of progress with symptoms very close to yours.  

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

My husband is also stage 4 with a 2 cm primary tumor in his left kidney and mets to his liver and lymph nodes. He is taking Votrient. I am sorry you're dealing with this and can appreciate how scared you must feel. The oncologists that we have been working with have been pretty positive. I know its hard, but the last few years have seen a lot of promise in the research for RCC, and there are so many new things on the horizons. As hard as it is, try to keep your focus on being positive and living. 

Sutent, Votrient, and one other drug I can't remember at the moment are typical first drugs given for RCC. Votrient typically has fewer side effects. There are other drugs as well if these don't work, and there are clinical trials that seem really promising. I wish you the best of luck.

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Sorry to hear about your condition and the bumpy road facing you ahead. Have faith though in the fact that a lot of improvements have been done in the last 5-10 years in the treatment of RCC, especially when it comes to the more advanced stages of disease.

As for the question at the end of your post, well, none of us are oncologists, but normally the approach would be first to consider if your were able to tolerate/undergo immunotherapy. Simply because immunotherapy, besides complete surgical resection, is the only treatment that can result in longterm complete response. The optimal thing would be if the lesion on your liver (if it actually *is* a met) is able to be surgically removed.

If none of the above are possible or deemed viable, a lot of various systemic treatments are available. All of these targets to achieve either reduction or stabilisation of existing mets as well as preventing additional metastatic or recurring disease.

Which path you will go down depends on a number of factors and is something you should discuss specifically with an oncologist with extensive RCC experience.

Best wishes.

/G 

 

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

Thanks to all that responded to my post. I realize what a tough journey I will be going through and am glad to have found this board to sound off on. I'm keeping positive thoughts, although none of my test results have gone my way. Here's hoping the chest x-ray and MRI I had done yesterday will favor more to my side. I will find out more on the 5th when I see my medical oncologist.

Thanks for being there and lending an ear. I hope all of you have a good day.

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