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Just Starting the Fight - updated

nyisles's picture
nyisles
Posts: 27
Joined: Mar 2013

I want to thank everyone for their support and update you on what is going on and some strange additions:

-Brain scan and Bone scan taken on April 1st both came out normal

Here is the summary of opinion #1 (my main doc)

-7cm mass on left kidney, mass on side (about a small golf ball), related lung nodule

-surgery to remove the kidney and side mass; later surger to remove piece of the lung

-preventative treatment of IL-2 to clean out and cure any microbes floating

 

Here is the summary of opinion #2 (today)

-7cm mass on left kidney, mass on side, 2.5 inch lung mass with multiple bi lateral leisons

-surgery to remove the kidney and side mass; no lung surgery

-start immediate chemo with a new drug (didn't name it), said that tumors only shrink with chemo and that IL-2 is "last year's drug" and they want to treat me with this year's drug since it will give me the best chance to survive. Also said that they do not think I will last 15 years

 

Now both opinions had access to the same scans and reports, yet it seems like they have totally different outlooks.  Neither opinion was from an oncologist.  Opinion #1 was collectively from the radiologist, general surgeon and urologist.  Opinion #2 was from a urologist and physicans assistant. 

First of all, how can the opinions be so different?  Second, how can #2 dismiss IL-2 which is the only drug that has been known to CURE the type of cancer I have? Third, how can #2 say chemo is the only way to shrink lung tumors when chemo does not work on RCC?  How can #1 say there is 1 nodule in the lung while #2 says it is a mass with multiple leisons?  I am so confused and even more devastated than I was before.

At today's opinion (#2) I felt like I was a lab rat and felt like they tried to sell me on some new experimental drug to see if it would work. Ironically, they asked what the other docs said before telling me their opinion.  I wanted to see their opinion without knowing the other one.  They then told me they talked to the oncologist and to see him upstairs right away.  Now I thought we would go in quick to chat for a few since the docs spoke....well we sat for 15 minutes then we told he has other appointments and that it could be hours until we see him.  I said I will reschedule and left.  It made me feel even more that I was being sold in a clinical trial.

dhs1963's picture
dhs1963
Posts: 381
Joined: May 2012

I think you need to find a urological oncologist.  The only drug that has a potential for a cure is HD-IL2 -- About 10% of reciepients are cured.  With that said, the newer targeted drugs will inhibit tumor growth in some cases.  I am not sure where the top places are in your area.  (I am going to NIH on a clinical study; I imagine Sloan-Kettering is good).

It is a tough diagnosis.  There is no question that the primary tumor must come out.  The other side tumor should come out.

An agressive thorasic surgeon may be able to get out the lung nodules, though I am not sure.

 

nyisles's picture
nyisles
Posts: 27
Joined: Mar 2013

The thing is that I am only 13 days into my diagnosis and it is all new and overwhelming.  I have surgery scheduled for Friday so they can remove the kidney and side mass.  Since I am from NY, I am having the surgery done by North Shore Hospital in Manhasset, NY by Dr. Lee Richstone.  Opinion #1 came from all the North Shore doctors (but none were oncologists).

Opinion #2 came from Sloan-Kettering in Manhattan.  I saw Dr. Guido Dalbagni but his physican assistant did most of the talking (neither were oncologists).  If anyone has the name of a kidney cancer oncologist, please let me know so I can go there after my surgery is complete. 

dhs1963's picture
dhs1963
Posts: 381
Joined: May 2012

http://suonet.org/default.aspx

AprilandChuck's picture
AprilandChuck
Posts: 101
Joined: Feb 2013

You are in a great place to find specialist!! And if what happened to Chuck happens with you once you are in the Hospital one may find you!! if not ask around don't be afraid.. you need to get the Kidney and other mass out.. thats the first thing.. and we went first thing first with Chuck...then you will be able to deal with the other more easily.. it's only been since July for us...sometimes it still feels like things are spinning.., because hardly any of this is in our control...and Cancer is a big scarey word...we have found HOPE has more power if you let it... Take a deep breath(which is sometimes harder than you think.. Chuck found out that remembering to breath since July has been the hardest thing)get your surgery out of the way...then you will have an easier time coping with the options... Hugggggssssss

NanoSecond's picture
NanoSecond
Posts: 589
Joined: Oct 2012

If you are at Memorial Sloan Kettering Cancer Center - ask to meet with Dr. Martin Voss - or the top dog himself, Dr. Robert Motzer.

AprilandChuck's picture
AprilandChuck
Posts: 101
Joined: Feb 2013

Get another Opinion you are clearly not comfortable with what you were told... And DHS is right at this time the only thing KNOWN to cure Kidney Cancer is IL2... the percentage it actually works on is scarey small... Chuck was one of those who recieved a mixed result from HDIL2 worked on his Liver did not on his lungs..and we are entering a  Clinical Trial... however the doctors gave us ALL the options available to Chuck... and gave us time to digest them and think them over...and we asked to be considered for the Trial...When it was presented as an option... I will say you are the newly scared part.. you need to be comfortable with the Doctors as you can...I have no clue what area you are in or who you are seeing... but ask around if you need too... Oncologists who specialize in Kidney cancer are not thick on the ground.. in most area's but it would be definitly worth the drive for a second opinion....the one thing I do like about what you posted is.. Option 1 involves IL2 straight away.. most people have to wait a bit for it...

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

You're doing the right thing by seeking guidance here. I'd like to suggest you visit the Kidney-ONC list at ACOR.org if you haven't been there yet. There are a lot of knowledgeable people there and here who can help you.  They recently posted a link to an article about the value of the online community:

http://www.bmj.com/content/346/bmj.f1990?ijkey=0JxlprFzE2QUBvn&keytype=ref

Texas_Wedge from this group has posted an informative guide to subscribing to the ACOR.org listserv:

http://csn.cancer.org/node/247312


I hope this helps! --David

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

Good perception. I felt like I was being sold on votrient prior to being offered the MDX at another facility. I remember the feeling well. At the time I didn't see what was in it for me. Only what they would get from it. After surgery you will have time to make a better informed decision. Good job.

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