My first post

debraecm
debraecm Member Posts: 2
in Kidney Cancer #1

I'm somewhat new here joined in December but this is my first post. My husband had a partial neph February 6, 2013 his tumor was at stage 1 size was 3.3. The mass  was located on the upper part of his right kidney on the outer layer. They had to go behind his liver to remove it. My question is should we be worried because the mass was on the outside of the kidney rather than the inside? Is the likelihood of it spreading much greater due to is location? I tried to ask this question during his admission only to hear that he was "cured" in response. I have been worried sick over this and have spent hours and hours doing research. Another issue we are dealing with is controlling his pain and  the leaking. His was given a Rx s for Ultram which did NOTHING for his pain at this point I just dont know where to turn. I have never seen my husband in this type of pain it just breaks my heart. He does what he can around the house for the most part he walks daily and has done well with the new diet. Well I guess that's enough rambling on my part. I'm so glad that I found this forum it has been a blessing.

 

 

Debra Jay"s Wife

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Welcome

    Jay's wife,

     

    Welcome to our little club as a caregiver,

    At  3 weeks out Jay is still weak but should be feelin a little better each day and in 3 more weeks should be doing most  everything except the heavy stuff. My surgery was 10 and 1/2 years ago and I am doing fine. I will be 70 this summer. Faye across the street is 18 years out and is turning 82. For the most part those of us with rascals 4 cm or under lead normal uneventful lives as far as Kidney Cancer.

    Now that it is out your husband has to practise saying that he had Kidney Cancer, not that he has it,

    All of us raelize that it is a little scary to hear the C word and the S word so close to our diagnosis.

    Many members of our club face a more difficult road ahead.

    May this be a mere bump in the road in you journey thru life.

     

    Icemantoo

  • NanoSecond
    NanoSecond Member Posts: 653
    #3
    Dealing with pain

    Hi Debra,

    I am very sorry to hear about your husband still being in pain.  That is not right. Utram (Tramadol) is not a very powerful pain killer just after surgery.  Any chance that you can get your doctors to consider Percocet or Oxycodone for a short time?

    Whatever he takes, keep in mind that all these pain relievers will cause intense constipation.  So he needs to be on something like Miralax or equivalent whenever taking them.

    As far as your fear about it spreading.  I may be mistaken but I don't believe his risk is any worse (or any better) just because the tumor was located on the outside of the kidney.  If the surgeon got everything visible out and there was no evidence of any spread to any nearby lymph nodes I think he is probably in fine shape for now.

    That does not mean he is totally out of the woods.  CTC's (Circulating Tumor Cells) can be travelling (and hiding) where blood circulates or the lymphatic system carries them.  They can settle anywhere they find some fertile ground - not just in an organ that was once touching the kidney.

    The plan going forward should be to monitor for any recurrance by doing CT scans every 3 to 4 months.  Jay is seeing an oncologist, correct?

    Best wishes,

    -NanoSecond (Neil)

  • garym
    garym Member Posts: 1,647
    #4
    Pathology report...

    Hi Deb,

    I would refer to the pathology report for concerns regarding spreading, if it says clear cell, stage 1, grade 1, and clear margins, as I suspect, then you can stop worrying.  At 3.3cm his tumor is considered very small further reducing the chances of reocurrance, be thankful it was found early and look forward to a long life together.  They should have had his pain under control before sending him home, I'd follow Neil's (nanno) advice there and talk to your doctor, there is no reason for him to be suffering.  This journey can be harder on the caregivers like you than it is on the actual patient, don't forget to take care of yourself as well.  Good luck and keep us posted.

    Welcome,

    Gary

  • debraecm
    debraecm Member Posts: 2
    #5
    icemantoo said:

    Welcome

    Jay's wife,

     

    Welcome to our little club as a caregiver,

    At  3 weeks out Jay is still weak but should be feelin a little better each day and in 3 more weeks should be doing most  everything except the heavy stuff. My surgery was 10 and 1/2 years ago and I am doing fine. I will be 70 this summer. Faye across the street is 18 years out and is turning 82. For the most part those of us with rascals 4 cm or under lead normal uneventful lives as far as Kidney Cancer.

    Now that it is out your husband has to practise saying that he had Kidney Cancer, not that he has it,

    All of us raelize that it is a little scary to hear the C word and the S word so close to our diagnosis.

    Many members of our club face a more difficult road ahead.

    May this be a mere bump in the road in you journey thru life.

     

    Icemantoo

    Icemantoo, NanoSecond and Gary,

    Thank you all for the support and words of wisdom. Icemantoo 10 1/2 years wow thats wonderful! It gives us hope that we can and will survive this. I forgot to mention that my husband is also a diabetic and has high blood pressure all of which are contributing factors no doubt. Thankfully all are under control at the momment. NanoSecond, no one had suggested he see a Oncologist up to this point however I plan to have him speak to his Uro about this. We live in Wytheville, VA which is a very small town about a hour from Blacksburg, VA. Living here puts us in a huge disadvantage when it comes to medical care.

     

     

    Debra

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #6
    debraecm said:

    Icemantoo, NanoSecond and Gary,

    Thank you all for the support and words of wisdom. Icemantoo 10 1/2 years wow thats wonderful! It gives us hope that we can and will survive this. I forgot to mention that my husband is also a diabetic and has high blood pressure all of which are contributing factors no doubt. Thankfully all are under control at the momment. NanoSecond, no one had suggested he see a Oncologist up to this point however I plan to have him speak to his Uro about this. We live in Wytheville, VA which is a very small town about a hour from Blacksburg, VA. Living here puts us in a huge disadvantage when it comes to medical care.

     

     

    Debra

     

    High Blood Pressure

    Debra,

    I have not heard of high blood pressure or diabetes causing Kidney Cancer although I have had high blood pressure for many years. What they do cause however is loss of kidney function as does loss of a Kidney or partial Kidney. He should have a blood test for GFR which measures Kidney function. Like others in the club his numbers will show a stage of CKD (Chronic Kidney Disease). The concern is that over time CKD causes heart problems way before getting close to Kidney failure. Given that he has 3 bad factors, HBP, Diabetes and loss of a Kidney or partial Kidney he should consult in addition to a GP, a Nephrologist to monitor his Kidney function. These comments have nothing to do with Kidney Cancer which should not be a problem. My GFR is 45 and is up from 41 as a result in medication changes from my Nephrologist. That is still Stage 3 CKD. One other factor is age. I am 69. Those younger should have a higher GFR.

     

     

    Icemantoo

  • NanoSecond
    NanoSecond Member Posts: 653
    #7
    debraecm said:

    Icemantoo, NanoSecond and Gary,

    Thank you all for the support and words of wisdom. Icemantoo 10 1/2 years wow thats wonderful! It gives us hope that we can and will survive this. I forgot to mention that my husband is also a diabetic and has high blood pressure all of which are contributing factors no doubt. Thankfully all are under control at the momment. NanoSecond, no one had suggested he see a Oncologist up to this point however I plan to have him speak to his Uro about this. We live in Wytheville, VA which is a very small town about a hour from Blacksburg, VA. Living here puts us in a huge disadvantage when it comes to medical care.

     

     

    Debra

     

    Diabetes

    Debra,

    I don't want to unduly alarm you or you husband but having diabetes does increase the risk of metastates and can affect the long term prognosis for those with renal cell carcinoma (RCC).

    So, it would be worthwhile to at least consult with an RCC oncologist if at all possible.

    Is he by any chance taking the drug Metformin to control his Insulin levels?  If so - great.  Many oncs are using that drug in combination with others to deal with mets and getting lots of success.

    The best thing right now, though, is to try to help control the diabetes by paying close attention to proper nutrition. In particular - no excess sugar(s) and a low carb diet really are important.  And his blood pressure will be lower.

    You might want to read the book, "Life Over Cancer" by Dr. Keith I. Block.  It goes into great detail about proper diet and nutrition (and other important areas) for cancer sufferers.

    Hope that helps,

     

    -NanoSecond (Neil)

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