Seek advise for colon cancer treatment please

tellspring
tellspring Member Posts: 16
in Colorectal Cancer #1

My wife just went thru colonoscopy and the mass size is 5-6cm, doc says it looks like cancer and bioposy result will be available in a few days. She also have bulky lymph nodes 2-3cm. The GI doc says they maybe not related. They couldn't remove the mass because the size and another surgery needs to be planned.

Scheduled for Thursday CT guided biopsy. 

Is there someone can please provide us some advise how should we plan to proceed? The HMO insurance referral process has been affecting progress and the young primary doctor has not been that helpful and proactive so far. My wife is thinking she may needs to go to UCLA.

Any kindly advice is greatly appreciated. As you may imagine, I'm scared.

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    First off

    the young primary doctor has not been that helpful and proactive so far.

    This makes me so mad.  Go find yourself a good primary Doctor. They are out there and you need someone who is compassionate as well as competent. 

    The CT scan is good news.  I hope your wife does not get too stressed.  Think positive thoughts. 

    When do you get your pathology report? Ask LOTS of questions, no matter how small or insignificant they may sound. Take a notebook filled with questions and make sure you get answers. 

    I also had a huge tumour which they excised within days of my diagnosis. No problems recovering from the surgery. Oncologist in my hospital room two days after surgery.

    I have been extremly happy with my treatment. 

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #3
    Advice...

    I would have a consultation with the best oncologist you can find. Even if this means going outside of your HMO network. For the $300-$400 that you will likely have to pay, the knowledge that you should receive is well worth it (IMO).

    When I was initially diagnosed, I went to an oncologist at Sloan Kettering in NYC and had to pay for the consultation myself. I then found a very good Onc that was in my network who was totally fine with letting my other Onc drive the bus so to speak. Many people do this. They go to top oncologists for "a game plan" then get another Onc to carry it out. Sometimes it's financially driven, other times it's because of location.

    My opinion is that you do NOT want to skimp on trying to get the best possible guidance with cancer. Very often what you do first makes all of the difference in the world. But do remember...nothing comes with any guarantees...

    I hope this helps,

    -phil

     

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #4
     
    Hi,
    As the others have

     

    Hi,

    As the others have stated, you need an experienced oncologist and colorectal surgeon - not a young primary doctor (he's good for colds and flu only at this point).

    I believe that others here have recommended Dr. Lenz at USC.

    http://www.uscnorris.com/colorectalcenter/team.htm

    Dr. Heinz- Josef Lenz
    Professor of Medicine and Preventive Medicine
    Associate Director, Clinical Research
    Chair, GI Oncology Program
    Co-director, Colorectal Center
    Scientific director, Cancer Genetics Unit at the USC/Norris Comprehensive Cancer Center

    Best wishes,

    Cynthia

  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #5
    I agree with the USC Dr. Lenz

    I agree with the USC Dr. Lenz second oppinion.  UCLA is a great system and has good medical care. USC for Colon Cancer is the Best in the nation!  Dr. Lenz is well wrth seeing. Once you are inthe USC system you are there for life if you keep them updated on your health.  They will give you their oppinion based on many Doctor's reviewing your case file. 

     

    Sedning you are thoughts and prayers for a great outcome!

     

    Best Always,  mike

    PS  PLEASE get an appointment with Dr. Lenz.

  • photoinstructor
    photoinstructor Member Posts: 2
    #6
    Educate, Educate, Educate

    I am sure that all of us that are responding to you have been scared, just like you are. I am also sure that you are going to receive lots of suggestions as to how to proceed, from a miriad of well intentioned people. Keeping asking, keep getting advice, and keep researching. There are two things that I have found very helpful in the research for my Colon cancer and subsequently my peritoneal surface malignancy. One is Google alerts, if you log onto google click on the word "more" on the top right side within the black bar then click on the words "even more" and scroll until you find alerts. In this section you can have Google alert you to published new developements in Colon cancer treatment. It is through this alert process that I originally made my way here.

    In that same "even more" section there is also a service called "scholar". By clicking here and entering your search parameters you will be see only scholarly papers written on your search query. This can help to weed out things that are more commercial in nature.

    I'm not saying to eliminate your normal search engine but just augment it with these additional options.

    Keeping asking your questions. The people here are caring and will do there best to help you.

    Best of luck to you and your wife, my prayers are now with you.

    NEVER GIVE UP!

  • tellspring
    tellspring Member Posts: 16
    #7
    Trubrit said:

    First off

    the young primary doctor has not been that helpful and proactive so far.

    This makes me so mad.  Go find yourself a good primary Doctor. They are out there and you need someone who is compassionate as well as competent. 

    The CT scan is good news.  I hope your wife does not get too stressed.  Think positive thoughts. 

    When do you get your pathology report? Ask LOTS of questions, no matter how small or insignificant they may sound. Take a notebook filled with questions and make sure you get answers. 

    I also had a huge tumour which they excised within days of my diagnosis. No problems recovering from the surgery. Oncologist in my hospital room two days after surgery.

    I have been extremly happy with my treatment. 

    The pathology will be

    The pathology will be available on Monday May 27

    You'ew lucky, get things done in a few days! You should post some praise for your doctor, our Doctor is almost an idiot and delay everything, and is even reluctant to do refer, his said if you have cancer, a couple of weeks does not make difference! 

  • tellspring
    tellspring Member Posts: 16
    #8
    PhillieG said:

    Advice...

    I would have a consultation with the best oncologist you can find. Even if this means going outside of your HMO network. For the $300-$400 that you will likely have to pay, the knowledge that you should receive is well worth it (IMO).

    When I was initially diagnosed, I went to an oncologist at Sloan Kettering in NYC and had to pay for the consultation myself. I then found a very good Onc that was in my network who was totally fine with letting my other Onc drive the bus so to speak. Many people do this. They go to top oncologists for "a game plan" then get another Onc to carry it out. Sometimes it's financially driven, other times it's because of location.

    My opinion is that you do NOT want to skimp on trying to get the best possible guidance with cancer. Very often what you do first makes all of the difference in the world. But do remember...nothing comes with any guarantees...

    I hope this helps,

    -phil

     

    thanks Phil. Yes we're making

    thanks Phil. Yes we're making appointment with UCLA by paying out of pocket. I can sell my house and everything if that makes my wife survive better, but I'm not sure if I can afford an UCLA surgery.

  • tellspring
    tellspring Member Posts: 16
    #9
    LivinginNH said:

     
    Hi,
    As the others have

     

    Hi,

    As the others have stated, you need an experienced oncologist and colorectal surgeon - not a young primary doctor (he's good for colds and flu only at this point).

    I believe that others here have recommended Dr. Lenz at USC.

    http://www.uscnorris.com/colorectalcenter/team.htm

    Dr. Heinz- Josef Lenz
    Professor of Medicine and Preventive Medicine
    Associate Director, Clinical Research
    Chair, GI Oncology Program
    Co-director, Colorectal Center
    Scientific director, Cancer Genetics Unit at the USC/Norris Comprehensive Cancer Center

    Best wishes,

    Cynthia

    thanks Cynthia, for now we're

    thanks Cynthia, for now we're planning to consult Doc. Heccht and we're waiting for appointment.

  • tellspring
    tellspring Member Posts: 16
    #10
    thxmiker said:

    I agree with the USC Dr. Lenz

    I agree with the USC Dr. Lenz second oppinion.  UCLA is a great system and has good medical care. USC for Colon Cancer is the Best in the nation!  Dr. Lenz is well wrth seeing. Once you are inthe USC system you are there for life if you keep them updated on your health.  They will give you their oppinion based on many Doctor's reviewing your case file. 

     

    Sedning you are thoughts and prayers for a great outcome!

     

    Best Always,  mike

    PS  PLEASE get an appointment with Dr. Lenz.

    thanks I'll discuss with my

    thanks I'll discuss with my wife

  • tellspring
    tellspring Member Posts: 16
    #11
    LivinginNH said:

     
    Hi,
    As the others have

     

    Hi,

    As the others have stated, you need an experienced oncologist and colorectal surgeon - not a young primary doctor (he's good for colds and flu only at this point).

    I believe that others here have recommended Dr. Lenz at USC.

    http://www.uscnorris.com/colorectalcenter/team.htm

    Dr. Heinz- Josef Lenz
    Professor of Medicine and Preventive Medicine
    Associate Director, Clinical Research
    Chair, GI Oncology Program
    Co-director, Colorectal Center
    Scientific director, Cancer Genetics Unit at the USC/Norris Comprehensive Cancer Center

    Best wishes,

    Cynthia

    Doc. Lenz

    Cinthia,

    Thanks for all the info. My wife's oncologist recommended to visit Dr. Lenz. So we'll seek consuling from both side.

  • tellspring
    tellspring Member Posts: 16
    #12
    thxmiker said:

    I agree with the USC Dr. Lenz

    I agree with the USC Dr. Lenz second oppinion.  UCLA is a great system and has good medical care. USC for Colon Cancer is the Best in the nation!  Dr. Lenz is well wrth seeing. Once you are inthe USC system you are there for life if you keep them updated on your health.  They will give you their oppinion based on many Doctor's reviewing your case file. 

     

    Sedning you are thoughts and prayers for a great outcome!

     

    Best Always,  mike

    PS  PLEASE get an appointment with Dr. Lenz.

    Dr. Lenz

    Thanks, yes we're going to see Dr. Lenz as well. You guys are pro, my wife's oncologist recommended him also.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #13
    tellspring said:

    The pathology will be

    The pathology will be available on Monday May 27

    You'ew lucky, get things done in a few days! You should post some praise for your doctor, our Doctor is almost an idiot and delay everything, and is even reluctant to do refer, his said if you have cancer, a couple of weeks does not make difference! 

    Rubbish!

     If you  have cancer, a couple of weeks does not make difference!  Quoting your Doctor.

    When you are diagnosed with Cancer or highly suspect you have cancer then every day makes a difference.

    I would really try for a new Doctor. 

  • coloCan
    coloCan Member Posts: 1,944 Member
    #14
    tellspring said:

    Dr. Lenz

    Thanks, yes we're going to see Dr. Lenz as well. You guys are pro, my wife's oncologist recommended him also.

    Dr Lenz: Here's a chance to hear him and others speak abit

    onvideo and maybe educate yourself a bit more on CRC from one of the links provided

    www.onclive.com/peer-exchange/colorectal-cancer

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #15
    tellspring said:

    thanks Phil. Yes we're making

    thanks Phil. Yes we're making appointment with UCLA by paying out of pocket. I can sell my house and everything if that makes my wife survive better, but I'm not sure if I can afford an UCLA surgery.

    Finances

    The fincial aspects of having cancer affect most of us.

    If you have to go out of pocket for best care, ask for info from patient advocate at the hospital and/or doctors what financial aid may be available or about payment arrangements.  There are options, but you have to be pro-active in searching for them.

    Wishing your wife best outcome from tests and consult.

    Marie who loves kitties

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