What to expect

MattInVa
MattInVa Member Posts: 50

Im 45 and was diagnosed with RCC

I went to the ER for blood in my urine and flank pain on Aug 27th where a ct revealed a large pt3b tumor on my right kidney that extended to my IVC. The doctors said I had to have it out immediately and on the 31st had an open radical nephorectomy.

I get around pretty well after surgery. They opened me from my side to about 2 inches past my sternum. I do some light work but I won't be able to work for a long time. I am a mechanic and it requires alot of core energy.

At this point they said I should be clear as they had seen no sign of it spreading. Just before I was released the attending MD at the hospital ordered a CT scan during which time they found mets on my lungs.

Just before I was released I was visited by several cancer people from the hospital and an oncologist giving me the news or "Breaking it to me". Talk about a big let down on the day I was going home.

 

My follow up with the surgeon was not encouraging,the only prognosis he gave was that I was going to die from this, just a matter of when. I know they can't give me a date but he was vague on long term surviveability.

I have my first visit to the oncologist tomorrow.

What should I ask?

It has been very very fast moving for me. 3 Weeks ago I was right as rain and felt fine. Now I find myself struggling to piece everything together. I have had to stop working for the forseeable future and I can't take care of many of the things I need to do.

 

Thanks,

Matt

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Comments

  • db8ne1
    db8ne1 Member Posts: 142
    Welcome - but sorry you are here...

    First of all - stop and take a breath!  You will find a lot of support on this board from some great folks.

    The first thing I'd do is search Dr. Google.  That said: DON'T.  Most of the information (for survival rates) is soooo outdated.  Due to the fact that RCC didn't historically present with symptoms until its metastasized (Stage V) - and these days its being discovered in its earlier states thanks to CT scans and the like - the data out on the internet is way outdated.  That's good news!  And because it's now being discovered sooner, the cancer community has more treatment options (and many trials available).  

    As for the Onc:  I'd ask the Oncologist if they specialize in RCC. Are you sure the lung spots are real mets?  Did they do a biopsy?  I have spots on my lungs that haven't changed in 3 years.  Why did they do the CT in the hospital after the surgery?  I had to wait 3 months post surgery for a follow-up CT. What kinds of treatments are available (I only needed surgery for my RCC - and then follow-up scans).

    If you aren't comfortable with the oncologist - or their answers - always get a second opinion.  

    I can relate to your state of mind.  I joined this board on the colorectal cancer (CRC) board (Stage 3) - and they found my RCC at that time (using CT scans).  We watched it grow for 1 1/2 years before doing a partial nephrectomy - mostly because I was busy dealing with the CRC.  Now, they are watching my OTHER kidney for possible RCC.   

    Please know my thoughts and prayers are with you on this unscheduled journey.  Please keep us updated!

    Best,

    J

  • foxhd
    foxhd Member Posts: 3,181
    oops, by the way,

    you have mets and will die. Well Matt, if that was an absolute fact, then this site called Cancer SURVIVORS network would not exist. Who can you believe more? Everyone here, or that ill informed doctor? You will need time to recover from surgery. That's first. Don't buy anything that your docs are selling yet. This is all too much to make any quick decisions about. Read throughout this forum and become a bit more familiar with your status and treatments available. Be certain that your doctor is the correct one to see. Being an oncologist isn't good enough. You need a renal cell cancer specialist. You wouldn't send your porsche to jiffy lube for an oil change or meinike (sp?) for a muffler. There is so much more available today in terms of trial drugs, approved drugs and radiation than non specialists know. Believe me when I tell you that this is a very common topic here. The most common thing members here will tell you is to get another opinion from a specialist. That single step has saved more lives than you can imagine. There are  many here with lung mets that are running road races, riding Harleys and living with metastatic disease while living fullfilled lives. Sorry you had to join us but it is not the end of the world yet. Being informed when talking and making decisions with your doctors is so very important. One thing for sure is that you won't learn enough tonight in time for your appt. tomorrow. See your doctor and bring back your information to share with everyone. There are some very smart and well informed survivors here.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    db8ne1 said:

    Welcome - but sorry you are here...

    First of all - stop and take a breath!  You will find a lot of support on this board from some great folks.

    The first thing I'd do is search Dr. Google.  That said: DON'T.  Most of the information (for survival rates) is soooo outdated.  Due to the fact that RCC didn't historically present with symptoms until its metastasized (Stage V) - and these days its being discovered in its earlier states thanks to CT scans and the like - the data out on the internet is way outdated.  That's good news!  And because it's now being discovered sooner, the cancer community has more treatment options (and many trials available).  

    As for the Onc:  I'd ask the Oncologist if they specialize in RCC. Are you sure the lung spots are real mets?  Did they do a biopsy?  I have spots on my lungs that haven't changed in 3 years.  Why did they do the CT in the hospital after the surgery?  I had to wait 3 months post surgery for a follow-up CT. What kinds of treatments are available (I only needed surgery for my RCC - and then follow-up scans).

    If you aren't comfortable with the oncologist - or their answers - always get a second opinion.  

    I can relate to your state of mind.  I joined this board on the colorectal cancer (CRC) board (Stage 3) - and they found my RCC at that time (using CT scans).  We watched it grow for 1 1/2 years before doing a partial nephrectomy - mostly because I was busy dealing with the CRC.  Now, they are watching my OTHER kidney for possible RCC.   

    Please know my thoughts and prayers are with you on this unscheduled journey.  Please keep us updated!

    Best,

    J

    First of all, Matt, but I am

    First of all, Matt, but I am so sorry you are going through all this, enough!

    But I must say, I am appalled at your surgeons announcing to you, that you'll die from this, just don't know when. REALLY? I have heard of some poor ways of telling cancer patients bad news, but still. I am angry and upset for you to hear that, in such a manner! Maybe others on here with Stage IV can help you more, but what I have been learning is that there are some treatments and such that have kept Stage IV folks going and going. Amazingly !!

    So, sending you a tender hug of hope and healing. We'll walk this journey along side you if you want us to.

    I'll be here for you for sure!

    Jan

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Spun around

    Matt,

    Man, you got caught in a right whirlwind the past few weeks, I am sure.  But read what FoxHD said above; this board is full of survivors who have found the right drug, the right immunotherapy that has WORKED and has not only extended their lives, but their QUALITY of life.  There is just too much stuff out there to just give up and not try it.  

    One thing I can't stand are negative doctors... I mean, what the hell are you a doctor for?  You have some mets on your lungs.  They are treatable.  There are about 10,000 things that have to happen before ANYONE tells you that you are going to die.  First things first, find an oncologist who SPECIALIZES in RCC.  There's a big difference between "experience with" and "specializes in."  RCC is not the most common cancer, and as such not a whole lot of doctors specialize in it.  Second, make sure that the doctor and their team is POSITIVE.  I have seen many people on this board deal with negative doctors and nurses and it's just not productive at all.  

    It's cancer.  We get it.  It's not going to be easy.  But, as my Dad said when I told him about my diagnosis, "It's friggin' 2015."  He didn't say "friggin" though.  Meaning, medical advancements exist.  Don't rest until you have a doctor with a plan, and you are comfortable with that plan.

    Good luck.

    - Jay 

  • icemantoo
    icemantoo Member Posts: 3,360 Member

    Spun around

    Matt,

    Man, you got caught in a right whirlwind the past few weeks, I am sure.  But read what FoxHD said above; this board is full of survivors who have found the right drug, the right immunotherapy that has WORKED and has not only extended their lives, but their QUALITY of life.  There is just too much stuff out there to just give up and not try it.  

    One thing I can't stand are negative doctors... I mean, what the hell are you a doctor for?  You have some mets on your lungs.  They are treatable.  There are about 10,000 things that have to happen before ANYONE tells you that you are going to die.  First things first, find an oncologist who SPECIALIZES in RCC.  There's a big difference between "experience with" and "specializes in."  RCC is not the most common cancer, and as such not a whole lot of doctors specialize in it.  Second, make sure that the doctor and their team is POSITIVE.  I have seen many people on this board deal with negative doctors and nurses and it's just not productive at all.  

    It's cancer.  We get it.  It's not going to be easy.  But, as my Dad said when I told him about my diagnosis, "It's friggin' 2015."  He didn't say "friggin" though.  Meaning, medical advancements exist.  Don't rest until you have a doctor with a plan, and you are comfortable with that plan.

    Good luck.

    - Jay 

    Some thoughts

    Matt,

     

    If you are not already there yet, seek out advice at a top hospital or Medical Center that is on the cutting edge of RCC treatments. Since you are in Virginia, Johns Hopkins comes to mind. You want to be treated by those who are top in their field.

     

    Icemantoo

     

  • MattinVa, I don't thhink I

    MattinVa, I don't think I can add much more than what others said, especially FoxHD.  And I echo what others said, find another doctor.  As my screen name indicates, a positive attitude and outlook are very important.  It does not help that your doctor is so blunt with you right after your surgery.  The first surgeon I visited after my diagnosis grimaced when he saw my CT scans and told me that he would have to remove my entire right kidney for a small tumor.  I went to another urologist oncologist in NYC and he was able to preserve 95% of my affected kidney, and he had a terrific attitude.    Don't let the opinion of one doctor affect your attitude. 

  • APny
    APny Member Posts: 1,995 Member

    MattinVa, I don't thhink I

    MattinVa, I don't think I can add much more than what others said, especially FoxHD.  And I echo what others said, find another doctor.  As my screen name indicates, a positive attitude and outlook are very important.  It does not help that your doctor is so blunt with you right after your surgery.  The first surgeon I visited after my diagnosis grimaced when he saw my CT scans and told me that he would have to remove my entire right kidney for a small tumor.  I went to another urologist oncologist in NYC and he was able to preserve 95% of my affected kidney, and he had a terrific attitude.    Don't let the opinion of one doctor affect your attitude. 

    Must have a been a huge shock

    Must have a been a huge shock to you being told about the lung mets. I too think another doctor is in order; one who is an RCC specialist and also has a somewhat better bed-side manner than telling someone they're going to die of this. We're all going to die, and it doesn't necessarily follow that it will be from RCC. I can also only echo what was said above. Treatment methods improved tremendously in the recent years so don't get discouraged by Googling things and reading outdated info. So sorry you have to be here but please listen to Fox and others above. Hugs.

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    APny said:

    Must have a been a huge shock

    Must have a been a huge shock to you being told about the lung mets. I too think another doctor is in order; one who is an RCC specialist and also has a somewhat better bed-side manner than telling someone they're going to die of this. We're all going to die, and it doesn't necessarily follow that it will be from RCC. I can also only echo what was said above. Treatment methods improved tremendously in the recent years so don't get discouraged by Googling things and reading outdated info. So sorry you have to be here but please listen to Fox and others above. Hugs.

    They're called specialists for a reason

    9 years and 4 months ago, I was told I had 5-7 months to live, if nothing was done.  Well I had surgery and they reomved a lot of cancer and parts, or all, of several orgsns.  And I had surgery again, and again.

    Now, I come on here to offer encouragement and hope.  It's going to be a rough ride, but always hang on to hope.

    Hugs, Donna

  • Shecka1121
    Shecka1121 Member Posts: 117 Member
    donna_lee said:

    They're called specialists for a reason

    9 years and 4 months ago, I was told I had 5-7 months to live, if nothing was done.  Well I had surgery and they reomved a lot of cancer and parts, or all, of several orgsns.  And I had surgery again, and again.

    Now, I come on here to offer encouragement and hope.  It's going to be a rough ride, but always hang on to hope.

    Hugs, Donna

    I am sorry that you have had

    I am sorry that you have had to go through this in a short amount of time and your last day in the hospital to have such heavy news delivered to you.  I have been encouraged reading updates from people like Fox, Donna, Footstomper, etc that have been through a lot and are still strong.

     

    There are several people on smartpatients (smart patients is another site) that have advanced RCC that can give you some framework.  I suugest you join that site as well as that site appears to share a lot of treatement plans for advance RCC.  Also, the facilator of that group appears to have a network of RCC specialist in certain areas.  

    this site and that site will give you a great support network and in time you will start to realize your doctor was ignorant and that you have a lot to lookforward to.  The journey may be tough but this is can be treated as a disease vs a death sentance.  

     

    I will hold you in my prayers.

     

    Shecka!

  • Srashedb
    Srashedb Member Posts: 482
    What a difference a doctor makes

    2 years and 3 months ago my husband was told that he had at most a year and maybe his last Christmas by the top oncologist in our area.

    Like you, we were in total shock since he had been in tip top shape except for some pain on his flank. he was referred to UCsf for laminectomy on the metastasis on his spine. We never returned to the original onc after discussions with the UCSF kidney cancer oncologist who actually knew the disease. Most oncologists are not experienced with kidney cancer which is unpredictable and has many different types.

    my husband had the laminectomy,cyber surgery radiation and nephrectomy; since then, he has had small spots show on his spine and been zapped with the cyber knife radiation. 

    so, as the others have said, find an oncologist who is experienced with kidney cancer; get second and third opinions until you find a doc who has the experience and whom you trust.

    Sarah

  • MattInVa
    MattInVa Member Posts: 50
    I guess things went well

    I guess things went well enough. They ordered more scans for next week, both brain and bone.

    Talked about some options.

    Pills

    Clinical trials

    High Dose IL2

    all of which I need to research. He also suggested I contact Johns Hopkins or Georgetown due to a fact they have rcc specialists ad clinical trials and are realitively close.

     

    Lots to do and think about and do over the next week or two.

     

    matt

     

     

  • Ree_Maryland
    Ree_Maryland Member Posts: 161
    MattInVa said:

    I guess things went well

    I guess things went well enough. They ordered more scans for next week, both brain and bone.

    Talked about some options.

    Pills

    Clinical trials

    High Dose IL2

    all of which I need to research. He also suggested I contact Johns Hopkins or Georgetown due to a fact they have rcc specialists ad clinical trials and are realitively close.

     

    Lots to do and think about and do over the next week or two.

     

    matt

     

     

    MattinVA

    Hi, Welcome, I live in Maryland, went to Georgetown Unniversity Hospital and had my right kidney removed because of RCC , the dr, I seen was excellent , he speicialzing in RCC . Check it out ,won't hurt, KEEP POSITIVE 

     My cancer kidney was removed April 2014 ,I feel pretty good now .no problems so far,

     

  • Shecka1121
    Shecka1121 Member Posts: 117 Member

    MattinVA

    Hi, Welcome, I live in Maryland, went to Georgetown Unniversity Hospital and had my right kidney removed because of RCC , the dr, I seen was excellent , he speicialzing in RCC . Check it out ,won't hurt, KEEP POSITIVE 

     My cancer kidney was removed April 2014 ,I feel pretty good now .no problems so far,

     

    Sarah, who was your husdand's

    Sarah, who was your husdand's doctor at UCSF.  That is where I am seen and my urologist/oncologist is Dr. Kristen Greene. She is wonderful as well.  I would be happy to know who else I could see at UCSF in the event she ever left.

     

    Thank you

  • Footstomper
    Footstomper Member Posts: 1,237
    MattInVa said:

    I guess things went well

    I guess things went well enough. They ordered more scans for next week, both brain and bone.

    Talked about some options.

    Pills

    Clinical trials

    High Dose IL2

    all of which I need to research. He also suggested I contact Johns Hopkins or Georgetown due to a fact they have rcc specialists ad clinical trials and are realitively close.

     

    Lots to do and think about and do over the next week or two.

     

    matt

     

     

    Get a new doctor!

    I see an excellent Dr at UMMC in Baltimore, Dr Hussain

    To be blunt yes you are dying, just like every other creature on the planet. Who knows when? Not you, not I and certainly not your doctor

    Sounds to me that the DocsSee you tomorrow mouth was not connected to his brain when he spoke to you

    Yeah its scarey, but when I think of all I've done in 50 years, thats pretty scarey too

    Also you have to be alive to be scared

    We were alive yesterday

    We are alive today (and its a great day and I'm just recovering from pneumonia)

    I The trick is living not dying everyday

    Youre at the start of what could be a very long journey

    Go buy a burger and a beer :)

  • Footstomper
    Footstomper Member Posts: 1,237

    MattinVA

    Hi, Welcome, I live in Maryland, went to Georgetown Unniversity Hospital and had my right kidney removed because of RCC , the dr, I seen was excellent , he speicialzing in RCC . Check it out ,won't hurt, KEEP POSITIVE 

     My cancer kidney was removed April 2014 ,I feel pretty good now .no problems so far,

     

    Matt

    Removed May 13 

    No problems I cant cope with

  • dhs1963
    dhs1963 Member Posts: 513
    MattInVa said:

    I guess things went well

    I guess things went well enough. They ordered more scans for next week, both brain and bone.

    Talked about some options.

    Pills

    Clinical trials

    High Dose IL2

    all of which I need to research. He also suggested I contact Johns Hopkins or Georgetown due to a fact they have rcc specialists ad clinical trials and are realitively close.

     

    Lots to do and think about and do over the next week or two.

     

    matt

     

     

    Go to Dr. Hans Hammers at Hopkins

    He understands the disease.

  • Footstomper
    Footstomper Member Posts: 1,237

    Matt

    Removed May 13 

    No problems I cant cope with

    Eh?

    I honestly dont know what I sais to have me comment removed, and I honestly would rather like to know. I try to be honest while positive and supportive. What did I do?

  • Srashedb
    Srashedb Member Posts: 482

    Sarah, who was your husdand's

    Sarah, who was your husdand's doctor at UCSF.  That is where I am seen and my urologist/oncologist is Dr. Kristen Greene. She is wonderful as well.  I would be happy to know who else I could see at UCSF in the event she ever left.

     

    Thank you

    UCSF

    His oncologist is Dr. Charles Ryan and his radiation/oncologist is Dr. Jeanne Nakamura

  • Srashedb
    Srashedb Member Posts: 482

    Sarah, who was your husdand's

    Sarah, who was your husdand's doctor at UCSF.  That is where I am seen and my urologist/oncologist is Dr. Kristen Greene. She is wonderful as well.  I would be happy to know who else I could see at UCSF in the event she ever left.

     

    Thank you

    UCSF surgeon

    his surgeon was Dr. Max Meng; they all work as a team.

    Sarah

  • foroughsh
    foroughsh Member Posts: 779
    Not all docs are well

    Not all docs are well informed about all cancer types. When I got my first CT report which showed my tumor, I was blind and didn't know it's a urologiest experties so I visited a nephrologist, she told me I should visit a uroligist,I was really affraid and asked her give me as much info as she can. So she told me I must get it out and if it's maligent then I'll be on chemotraphy, i told her  but i've heard kidney cancerous cells

    Are ressistent  against chemotraphy and she said it's not true. It took me time to ask my surgeon the same question and he said you're right we don't use chemotraphy for rcc, there are other options such as immunotraphy,targeted traphy,.... But the first doc gave me wrong info. So it's important to ask your question from the expert doc in RCC subject otherwise they'll give you wrong info.

    Forough