44 year old female with RCC

autumn4
autumn4 Member Posts: 18
edited March 2014 in Kidney Cancer #1
I was diagnosed on September 23rd, 2010 with RCC. I had a CAT scan a few months earlier for an unrelated illness and that's when they discovered the tumor on my right kidney. It was small a 1x4cm so I am thankful everyday to the Lord that this was found as early as it was. I had surgery September 23rd for ablation and to biopsy it. It came back as RCC. It's been 4 weeks now and I am doing well. Went to see surgeon yesterday for follow up and my urine sample had trace amounts of blood in it. I myself am concerned of course that the surgery did not work because I was having traces of blood in my urine before surgery and they just kept treating me for kidney infections in which I never had, it was related to RCC but did not know that at the time. The surgeon did not seem to be concerned when I asked him he just ordered a 6 month CAT scan. From the posts I have read on here it seems most people with RCC have had nephrectomy's. My surgeon is a urologist/surgeon. He is not an oncologist. Have any of you been seen by an oncologist, should I ask to be referred to one? Everything that I have learned about RCC is from the internet, the surgeon tells me nothing and how would I know what to ask.

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Welcome to the club
    The first thing I would ask for is a copy of your CT Scan, Biopsy and surgical report. While most of us have had nepheroctomys they have developed both a freezing procedure and a RFA (radio frequency procedure) in the last few years to remove small tumors. Although my doctor was a Urologist/Oncoligist the title varies among doctors doing these procedures. Since Oncologists deal with the treatment of Cancer and no further tratment is necessary after the Kidney Cancer surgery with small tumors someone with that title may not be necessary. What is important is that you have a competent doctor and also one who answers your questions.
  • autumn4
    autumn4 Member Posts: 18
    #3
    icemantoo said:

    Welcome to the club
    The first thing I would ask for is a copy of your CT Scan, Biopsy and surgical report. While most of us have had nepheroctomys they have developed both a freezing procedure and a RFA (radio frequency procedure) in the last few years to remove small tumors. Although my doctor was a Urologist/Oncoligist the title varies among doctors doing these procedures. Since Oncologists deal with the treatment of Cancer and no further tratment is necessary after the Kidney Cancer surgery with small tumors someone with that title may not be necessary. What is important is that you have a competent doctor and also one who answers your questions.

    gathering my records
    Thank you so much for replying to my post. I do have some questions, what do I do with my records once I get them? I'm sure I won't understand any of it. Would I get an appointment with the surgeon or have my family dr refer me to an oncologist to explain the results? My surgeon is very skilled I'm just not sure how much he knows about RCC and he doesn't say alot like I said in my post.Thank you!
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    autumn4 said:

    gathering my records
    Thank you so much for replying to my post. I do have some questions, what do I do with my records once I get them? I'm sure I won't understand any of it. Would I get an appointment with the surgeon or have my family dr refer me to an oncologist to explain the results? My surgeon is very skilled I'm just not sure how much he knows about RCC and he doesn't say alot like I said in my post.Thank you!

    Your records
    Once you get the records they may be self explanatory. Your surgeon who is also a Urologist will know something about RCC as that is a major area of Urology and those doing the surgery know the most about it.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #5
    autumn4 said:

    gathering my records
    Thank you so much for replying to my post. I do have some questions, what do I do with my records once I get them? I'm sure I won't understand any of it. Would I get an appointment with the surgeon or have my family dr refer me to an oncologist to explain the results? My surgeon is very skilled I'm just not sure how much he knows about RCC and he doesn't say alot like I said in my post.Thank you!

    Your records
    Once you get the records they may be self explanatory. Your surgeon who is also a Urologist will know something about RCC as that is a major area of Urology and those doing the surgery know the most about it.
  • fighting_the_fight
    fighting_the_fight Member Posts: 10
    #6
    44 Year Old Woman with RCC
    Autumn,

    I think a very important aspect of your treatment is that you feel confident and comfortable with your physician, and that he/she is willing and able to answer your questions or, if he/she doesn't know the answers, that he/she takes the time to find answers and report them back to you. Thank God, I have such an oncologist!

    I was first seen by a urologist who because I had such a small cyst, and "millions of people have cysts on their kidneys," elected to wait 6 months to perform another scan. Thank God I also had a cyst on my ovary and the gynecologist did not want to wait six months. She ordered a new scan for six weeks, and by that time the "small cyst" on my kidney had overtaken over half my kidney and I was now Stage 2. The left kidney was removed (by the urologist)and I went almost five years with no signs of a recurrence. Within a year of my surgery, and for various reasons, I elected to transfer my care to an oncologist. A year ago (almost 5 years post nephrectomy), we discovered that the RCC had metastisized into my lungs and lymph nodes. I am currently undergoing chemo/biological therapy and doing well.

    I recommend that you see an oncologist...or at least see a doctor who will be aggressive in the treatment of your cancer -- and someone who will spend as much time as you need to answer your questions and help you deal with your fears, if any. Just my suggestion.

    Fighting
  • autumn4
    autumn4 Member Posts: 18
    #7
    icemantoo said:

    Your records
    Once you get the records they may be self explanatory. Your surgeon who is also a Urologist will know something about RCC as that is a major area of Urology and those doing the surgery know the most about it.

    Thank you for the information icemantoo! I greatly appreciate it!
  • autumn4
    autumn4 Member Posts: 18
    #8
    fighting_the_fight said:

    44 Year Old Woman with RCC
    Autumn,

    I think a very important aspect of your treatment is that you feel confident and comfortable with your physician, and that he/she is willing and able to answer your questions or, if he/she doesn't know the answers, that he/she takes the time to find answers and report them back to you. Thank God, I have such an oncologist!

    I was first seen by a urologist who because I had such a small cyst, and "millions of people have cysts on their kidneys," elected to wait 6 months to perform another scan. Thank God I also had a cyst on my ovary and the gynecologist did not want to wait six months. She ordered a new scan for six weeks, and by that time the "small cyst" on my kidney had overtaken over half my kidney and I was now Stage 2. The left kidney was removed (by the urologist)and I went almost five years with no signs of a recurrence. Within a year of my surgery, and for various reasons, I elected to transfer my care to an oncologist. A year ago (almost 5 years post nephrectomy), we discovered that the RCC had metastisized into my lungs and lymph nodes. I am currently undergoing chemo/biological therapy and doing well.

    I recommend that you see an oncologist...or at least see a doctor who will be aggressive in the treatment of your cancer -- and someone who will spend as much time as you need to answer your questions and help you deal with your fears, if any. Just my suggestion.

    Fighting

    oncologist
    First I am very sorry to hear what you are going through, I will keep you and all in my prayers. I called the one and only urology/oncologist in my area and am awaiting a return call from them to get an appoitment. I just want to know what I am up against and my surgical results. Thank you so much and may God bless you.
  • autumn4
    autumn4 Member Posts: 18
    #9
    fighting_the_fight said:

    44 Year Old Woman with RCC
    Autumn,

    I think a very important aspect of your treatment is that you feel confident and comfortable with your physician, and that he/she is willing and able to answer your questions or, if he/she doesn't know the answers, that he/she takes the time to find answers and report them back to you. Thank God, I have such an oncologist!

    I was first seen by a urologist who because I had such a small cyst, and "millions of people have cysts on their kidneys," elected to wait 6 months to perform another scan. Thank God I also had a cyst on my ovary and the gynecologist did not want to wait six months. She ordered a new scan for six weeks, and by that time the "small cyst" on my kidney had overtaken over half my kidney and I was now Stage 2. The left kidney was removed (by the urologist)and I went almost five years with no signs of a recurrence. Within a year of my surgery, and for various reasons, I elected to transfer my care to an oncologist. A year ago (almost 5 years post nephrectomy), we discovered that the RCC had metastisized into my lungs and lymph nodes. I am currently undergoing chemo/biological therapy and doing well.

    I recommend that you see an oncologist...or at least see a doctor who will be aggressive in the treatment of your cancer -- and someone who will spend as much time as you need to answer your questions and help you deal with your fears, if any. Just my suggestion.

    Fighting

    oncologist
    First I am very sorry to hear what you are going through, I will keep you and all in my prayers. I called the one and only urology/oncologist in my area and am awaiting a return call from them to get an appoitment. I just want to know what I am up against and my surgical results. Thank you so much and may God bless you.
  • rae_rae
    rae_rae Member Posts: 300 Member
    #10
    autumn4 said:

    oncologist
    First I am very sorry to hear what you are going through, I will keep you and all in my prayers. I called the one and only urology/oncologist in my area and am awaiting a return call from them to get an appoitment. I just want to know what I am up against and my surgical results. Thank you so much and may God bless you.

    I agree...get a second
    I agree...get a second opinion and ask for all copies of tests and your pathology. I keep everything in a three ring binder and have CD copies of all scans as well. Fear of the unknown is the worst. If your current doctor leaves you feeling that way, find one that makes you feel secure. This is your life- you deserve to have peace of mind. I hope you hear from the new doctor soon. If not, keep calling. The squeaky wheel gets oiled first.
  • autumn4
    autumn4 Member Posts: 18
    #11
    rae_rae said:

    I agree...get a second
    I agree...get a second opinion and ask for all copies of tests and your pathology. I keep everything in a three ring binder and have CD copies of all scans as well. Fear of the unknown is the worst. If your current doctor leaves you feeling that way, find one that makes you feel secure. This is your life- you deserve to have peace of mind. I hope you hear from the new doctor soon. If not, keep calling. The squeaky wheel gets oiled first.

    second opinion
    Thanks rae_rae for the advice. You are so right you need to feel comfortable and confident in your care. The oncologist called me back and I have an appt in 2 weeks and they are getting all my pathology and surgical notes and scans, biopsyies and whatever else they need before my appt so I am looking forward to getting some answers. I don't know why the surgeon did not tell me anything other than you have rcc, we froze it, 25 % chance of coming back anytime anywhere and that was it. Take care and thanks again.
  • fighting_the_fight
    fighting_the_fight Member Posts: 10
    #12
    autumn4 said:

    second opinion
    Thanks rae_rae for the advice. You are so right you need to feel comfortable and confident in your care. The oncologist called me back and I have an appt in 2 weeks and they are getting all my pathology and surgical notes and scans, biopsyies and whatever else they need before my appt so I am looking forward to getting some answers. I don't know why the surgeon did not tell me anything other than you have rcc, we froze it, 25 % chance of coming back anytime anywhere and that was it. Take care and thanks again.

    Autumn,

    I am so glad to hear that the oncologist called you back and that you have an appointment scheduled. It sounds like you are on the road to getting your questions and concerns voiced and answered!

    Thank you also for your post to me and for your prayers. Believe it or not, I feel truly blessed and have so very much for which to be thankful.

    I wanted to pass on one more thing to you. When asking questions of your oncologist (or any doctor for that matter), if they won't give you a definitive answer, I have often said to them "IF this were your wife or one of your family members having to make these decisions, what would you recommend to them?" The first time I asked my oncologist that, I thought he was going to fall over. Now, he has come to expect it from me, and he usually has a recommendation for me and is ready to explain why he leans in that direction.

    I hope you have a wonderful weekend and that your visit with the oncologist is helpful. Keep me posted. God's many blessings to you and yours.

    Fighting

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