anyone here with kindney cancer with mets to small intestine

katewatts
katewatts Member Posts: 21
in Kidney Cancer #1

My husband began bleeding rectally three weeks ago.  It was off and on till thurs when it became much worse.  We both left our jobs and headed to ER.  He was admitted ASAP.  We told them of his past kidney removal due to caner in 2006. He has been scanned every year without fail both lower body and lungs and has had colonoscopy and endoscopy on regular basis.  They determined the blood was coming from his lower intestine.  They did emergency surgery as he had lost 5 pints of blood.  Dr. came out saying his small intesitne was full of tumors.  They took only the ones that were not life threatening and leaving others stating he would not survive the removal of those.  I am in total shock.  This in not curable at this stage and he is looking at paliative care chemo (pill form).  We thought we were doing all the right things by staying on top of things and he has not been sick at all.....no stomach pains, no nothing,,,,,,not even weight loss.  Now this.  Just wondering if anyone else has had this happen.  it's extrememly rare.

Comments

  • Galrim
    Galrim Member Posts: 315 Member
    #2
    Hi Kate,

    First of all Im extremely sorry to hear about your husbands condition. I hope that you despite all that is happening have the ressourcefulness to overcome the difficult times ahead.

    You are indeed right that your husbands condition is extremely rare. There is however some information available. This case study

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180665/

    might be of interest. It sounds somewhat similar to your husbands case. Especially the part aboiyt treatmentt.

    Have you had a second opinion about your husbands case? With such a rare presentation, he should

    really be checked by a very RCC experienced surgeon/oncologist.

    /G

  • katewatts
    katewatts Member Posts: 21
    #3
    Galrim said:

    Hi Kate,

    First of all Im extremely sorry to hear about your husbands condition. I hope that you despite all that is happening have the ressourcefulness to overcome the difficult times ahead.

    You are indeed right that your husbands condition is extremely rare. There is however some information available. This case study

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180665/

    might be of interest. It sounds somewhat similar to your husbands case. Especially the part aboiyt treatmentt.

    Have you had a second opinion about your husbands case? With such a rare presentation, he should

    really be checked by a very RCC experienced surgeon/oncologist.

    /G

    Thank you

    No second opinion yet.  This is all just 4 days old so very fresh and yes, we will be doing that for sure.  Thanks for the site.  I will check it out

  • mrs_blkjak
    mrs_blkjak Member Posts: 103
    #4
    I have no experience with

    I have no experience with mets to small intestines, but my 41 year old husband also is stage 4 with unusual circumstances. it sounds like you plan to pursue an oncologist experienced with RCC, which is important. Other than that, I want to encourage you to stay hopeful and positive. The drugs out for RCC (which are only out in the last six years) are helping people to LIVE their lives with a lot of normalcy. While there is no cure at this time, there is so much research. My husbands doctors have told us that they are close to managing RCC as a chronic disease. We are hoping for new developments to continue providing him and all those diagnosed with more options. 

    I can appreciate the shock you must be in right now. We are three months out from diagnosis and remember well the first few weeks. It was hell. we are still up and down, but stay as positive as we can and focus on enjoying life. Work through the shock and the feelings as they come, arm yourself with information, and try to focus on living. I'm so sorry you are facing this and wish you the best. 

  • katewatts
    katewatts Member Posts: 21
    #5
    mrs_blkjak said:

    I have no experience with

    I have no experience with mets to small intestines, but my 41 year old husband also is stage 4 with unusual circumstances. it sounds like you plan to pursue an oncologist experienced with RCC, which is important. Other than that, I want to encourage you to stay hopeful and positive. The drugs out for RCC (which are only out in the last six years) are helping people to LIVE their lives with a lot of normalcy. While there is no cure at this time, there is so much research. My husbands doctors have told us that they are close to managing RCC as a chronic disease. We are hoping for new developments to continue providing him and all those diagnosed with more options. 

    I can appreciate the shock you must be in right now. We are three months out from diagnosis and remember well the first few weeks. It was hell. we are still up and down, but stay as positive as we can and focus on enjoying life. Work through the shock and the feelings as they come, arm yourself with information, and try to focus on living. I'm so sorry you are facing this and wish you the best. 

    Thanks

    We just found out that the tumors left behind after the surgery are attached to the superior mesenteric artery which makes for a very risky situation when it comes to removal.  So that's why they were left behind.  Will be posting more after oncology appointment on the 12 of july. Thanks for the support!!!

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