newly diagnosed with PRCC-soliciting questions to ask and advice?

Deaconsdc
Deaconsdc Member Posts: 6
in Kidney Cancer #1
Hi! I am a 36 year old female and am new to this. It all came on very suddenly. I was diagnosed with what was thought a non cancerous tumor/cyst on my left kidney. We only discovered it during the diagnosis of a very large kidney stone in the same kidney which I had removed. I've never had a kidney stone or any kidney issues before and it does not run in my family. The doctor gave me the option of just surveilling the tumor over time or surgery to remove it. I chose to have it removed just to be safe. We had discussed the chance of a partial nephrectomy once in surgery depending on the size of the tumor and exact location. Long story short, during surgery they went to my husband in the waiting room to ask for permission to remove the entire kidney. The tumor size was much larger than originally thought (8 X 8 X 8 8.5cm) and there were blood supply issues. Still no one thought it was cancer. Given the size and the total nephrectomy my incision(s) are quite large. The surgery was Monday and I just found out yesterday it was Papillary Renal Cell Carcinoma, which shocked us all. However, the doctor believes that he got it all and the margins were clear. I do not know what stage I am, from what I have seen on line I would assume Stage 2 given the size.

My doctor basically told me that I am clear and to come back in a year for more scans and blood work. My concern is that that seems like a long time to go with no monitoring, especially since we do not know how long the tumor/cyst I had removed was there in the first place so we don't know how quickly it grew. It was one month from detection to removal. For others that have been through this, what questions should I be asking? Should I be pushing for checkups closer? How do they know it has not spread to my bones or lungs etc? I was not referred to an oncologist or anyone else for follow up either. This was my Urologist who diagnosed and conducted the surgery. A very good doctor by all accounts. However, I feel like I should be doing more to monitor the situation based on what I have read on line. For those who have been through this is there any advice you can give me or questions that I should ask? I do have a copy of my Pathology report but it is not easy for the laymen to read. I know I have to be my own health advocate, but this caught us so by surprise that I was not mentally prepared nor had I researched anything.

I would appreciate any advice anyone has to offer. I feel a little guilty asking as I realize many people on this network would trade place with this diagnosis in a heartbeat and I do feel lucky in some aspects, just totally unprepared.

Also, I am finding little information about PRCC on line but saw someone mention a list serv in an earlier post? Could someone tell me a little more about that?

Thank you again and best of luck to you all!
-DeacondDC

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Consider yourself very lucky
    Having a tumor that size out before any signs of it spreading is very good news. You should discuss with the surgeon and possibly an oncologist about the nature and frequency of follow up tests such as CT scans and a chest xray. Most of us on this board have had a nepherectomy. Mine was 9 years ago for a 4.2cm tumor when the CT scan showed 2.7cm. Although the C word is scary most of us have faced the same scary diagnosis and surgery right out of the gate to boot. With a little luck the surgery may be your only treatment although you may have to monitor your kidney function down the road.


    Best wishes,


    Icemantoo
  • niprut
    niprut Member Posts: 23
    #3
    Follow up.
    Hi Deaconsdc,

    Firstly, I hope you are feeling well. I am only under the care of my Urologist who was also my surgeon. No mention has been made of seeing an oncologist although like you I have wondered whether I should. I had a radical nephrectomy 12 months ago this week. Reports stated that I had a tumour approx 7cm and it was deemed to be clear cell carcinoma. (I am still waiting on a confirmation report thanks to this discussion board for backup). My Urologist, like yours said he got it all and that margins were clear. Although again I would like to see this in writing.

    My Urologist was excellent when it came to the surgery however he seems at times very blase about the impact that this surgery/ and having discovered I had cancer has had on my emotional state. He keeps telling me not to worry and everything is fine and go and live life. Which is great, but Information is my lifeline and I do worry, and I would like honest answers, not ones that are going to make me feel better. He has suggested that I will likely see him every 6 months for 3 years and then yearly for the next two. Currently I am have Chest Xrays, Blood Work, Ultrasounds on my remaining kidney and bladder at 6 month intervals. I think 12 months would be a long time for me emotionally in between consultations. Sometimes I don't think they understand the mind games we play with ourselves.

    Good luck with your healing and take it as easy as you possibly can. As I was told, your body has just been through major trauma.

    Jo
  • ejneary
    ejneary Member Posts: 64
    #4
    You should make sure to...
    be assigned to an oncologist. The job of the oncologist is to determine the risk and set follow on treatment accordingly. An 8CM tumor is a high enough grade that you should be seeing an oncologist regularly with scans at least every 6 months. They might also suggest clinical trials that you can go on to reduce the possibility of recurrence. Make sure to do some online research to determine what courses of treatment are being suggested for your type of cancer and staging.

    John
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #5
    RCC follow up
    I, too, am only working with my urologist surgeon.

    I had my surgery 4 weeks ago, although the tumor was found and diagnosed in December. Kidney cancer is typically very slow growing. For example, in that 6 months, my tumor only grew barely 1mm.

    I was given the option of having my follow up ct scan anytime between 6 months and 1 year. Why so far out? Because it is so slow growing, there wouldn't be much to see before then! If any cancer were there, it likely wouldn't be detectable yet.

    Since my urologist gave me the option, I'm sure that if you asked for a sooner follow up, it wouldn't be a problem. As someone mentioned above, sometimes you need it just for your own peace of mind.

    If you've had a ct scan that has ruled out the presence of any other current lesions, for example on your other kidney, then you should be able to schedule your follow up at an interval you're comfortable with. It's not a rush job, but your emotional peace is worth supporting.
  • jona187
    jona187 Member Posts: 71
    #6
    Jamie1.3cm said:

    RCC follow up
    I, too, am only working with my urologist surgeon.

    I had my surgery 4 weeks ago, although the tumor was found and diagnosed in December. Kidney cancer is typically very slow growing. For example, in that 6 months, my tumor only grew barely 1mm.

    I was given the option of having my follow up ct scan anytime between 6 months and 1 year. Why so far out? Because it is so slow growing, there wouldn't be much to see before then! If any cancer were there, it likely wouldn't be detectable yet.

    Since my urologist gave me the option, I'm sure that if you asked for a sooner follow up, it wouldn't be a problem. As someone mentioned above, sometimes you need it just for your own peace of mind.

    If you've had a ct scan that has ruled out the presence of any other current lesions, for example on your other kidney, then you should be able to schedule your follow up at an interval you're comfortable with. It's not a rush job, but your emotional peace is worth supporting.

    My wife was diagnosed with a
    My wife was diagnosed with a chromophobe type 8x8x6 which was encapsulated. She is currently on 6 month checks. We just had the removal in April, so our first can is in October. If you don't feel comfortable, ask the doctor why he feels the checks are not sooner. Be an advocate for yourself and don't be afraid to ask questions :)
  • jona187
    jona187 Member Posts: 71
    #7
    jona187 said:

    My wife was diagnosed with a
    My wife was diagnosed with a chromophobe type 8x8x6 which was encapsulated. She is currently on 6 month checks. We just had the removal in April, so our first can is in October. If you don't feel comfortable, ask the doctor why he feels the checks are not sooner. Be an advocate for yourself and don't be afraid to ask questions :)

    I would also look into some
    I would also look into some life style changes as it wouldn't hurt and could help improve things :) Better eating, so exercising after you recovery. I did take some notes with my doctor and will be glad to share them when I get home.
  • Deaconsdc
    Deaconsdc Member Posts: 6
    #8
    jona187 said:

    I would also look into some
    I would also look into some life style changes as it wouldn't hurt and could help improve things :) Better eating, so exercising after you recovery. I did take some notes with my doctor and will be glad to share them when I get home.

    I'd love any notes that you
    I'd love any notes that you have! Thank you for the offer. We really didnt get much information at all. I asked about any suggested eating or drinking restrictions and was told none, but we could always be healthier. They basically said "see you in a year", which on one hand is good news, but also a little nerve racking. I feel like we should have left with at least a pamphlet or some information on PRCC. We really didn't get any information, partly b/c we were unprepared for the diagnosis and partly b/c they basically said you are cured. I would have liked some assurance that they knew it had not spread anywhere else, which i assume they have but it wasn't verbalized as to how they knew that, so we need to push back and ask. Thank you again to everyone for their response. All in all we know we are lucky, but want to stay aggressive on the subject. Thanks again!
  • Deaconsdc
    Deaconsdc Member Posts: 6
    #9
    ejneary said:

    You should make sure to...
    be assigned to an oncologist. The job of the oncologist is to determine the risk and set follow on treatment accordingly. An 8CM tumor is a high enough grade that you should be seeing an oncologist regularly with scans at least every 6 months. They might also suggest clinical trials that you can go on to reduce the possibility of recurrence. Make sure to do some online research to determine what courses of treatment are being suggested for your type of cancer and staging.

    John

    Thank you for the advice and
    Thank you for the advice and the support. You've reasserted what we suspected. It was nice to hear from someone who has been through it. We just need to do the research to find an oncologist who fits the bill. We live in the DC area so Johns Hopkins and NIH are not too far away so hopefully it will not be too hard. I've heard that recurrence is high for this type, but if you are on top of it you can catch it early, however I have not found much research on the subject, mostly just antidotal. Although, I'm just starting to research everything and learn the lingo, so I'm still a novice. I'd appreciate any other advice anyone on the board is willing to share. It has been very helpful to read what others have experienced. Thank you again!
  • Anna Bery
    Anna Bery Member Posts: 18
    #10
    Deaconsdc said:

    I'd love any notes that you
    I'd love any notes that you have! Thank you for the offer. We really didnt get much information at all. I asked about any suggested eating or drinking restrictions and was told none, but we could always be healthier. They basically said "see you in a year", which on one hand is good news, but also a little nerve racking. I feel like we should have left with at least a pamphlet or some information on PRCC. We really didn't get any information, partly b/c we were unprepared for the diagnosis and partly b/c they basically said you are cured. I would have liked some assurance that they knew it had not spread anywhere else, which i assume they have but it wasn't verbalized as to how they knew that, so we need to push back and ask. Thank you again to everyone for their response. All in all we know we are lucky, but want to stay aggressive on the subject. Thanks again!

    From my experience, you have
    From my experience, you have to take your pothology report to at least 2 oncologist, better find somebody who specializes more in kidney cancer.The oncologists should tell you the grade and the stage of your tumor and chances it has spread to other places and chances of it coming back. Given the size of the tumor, CT scans at least every 6 months.
    Good luck
  • jona187
    jona187 Member Posts: 71
    #11
    jona187 said:

    I would also look into some
    I would also look into some life style changes as it wouldn't hurt and could help improve things :) Better eating, so exercising after you recovery. I did take some notes with my doctor and will be glad to share them when I get home.

    Sorry for the late reply,
    Sorry for the late reply, but I've been working late with projects and then when I get home it's usually time for me to take charge of cooking and new fatherly duties :)

    We were told to watch the salt intake, watch how much potassium we take in as well as it works the kidneys. No caramel coloring. Avoid unnecessary Nitrates, drink plenty of water. Good clean water. My wife was allowed to take a multivitamin but no mega dose vitamins. She received a limit on how much protein she received. I don't have the pamphlet on how they got the number.
  • ejneary
    ejneary Member Posts: 64
    #12
    Deaconsdc said:

    I'd love any notes that you
    I'd love any notes that you have! Thank you for the offer. We really didnt get much information at all. I asked about any suggested eating or drinking restrictions and was told none, but we could always be healthier. They basically said "see you in a year", which on one hand is good news, but also a little nerve racking. I feel like we should have left with at least a pamphlet or some information on PRCC. We really didn't get any information, partly b/c we were unprepared for the diagnosis and partly b/c they basically said you are cured. I would have liked some assurance that they knew it had not spread anywhere else, which i assume they have but it wasn't verbalized as to how they knew that, so we need to push back and ask. Thank you again to everyone for their response. All in all we know we are lucky, but want to stay aggressive on the subject. Thanks again!

    Please see the link beow
    This link has information on dietary changes and things to avoid when you have had a kidney removed...

    http://csn.cancer.org/node/185738

    John

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