Scans Again

Skagway Jack
Skagway Jack Member Posts: 224 Member

Well tommorow morning I get my CT again.  I took my blood test on Monday and my Creatin was sky high 1.77 and GFR 43 Just two weeks ago my Creatin was 1.52 and GFR was 48.....The clinic called and wanted me to come in for fluids but I was 10 mins from takeoff when they called so I promised to hydrate as well as possible.  I figure the high creatin was due to my working outside in the heat (90 F) on Sunday.  5 hours of hauling pond water and scrubbing out my pond lining etc...I tried to stay hydrated but I guess I wasnt getting enough.  Does anyone know if hard physical work cause a bump in creatin numbers even if you stay hydrated?  Somewhere I read that one should drink half their body weight in Ounces (so 200 lbs....100 oz of H2O per day.  Seems like a lot but thats what I have been doing.

Either way I will be getting contrast and probably a couple bags of IV fluids tomorrow. Last scan in February revealed a "cyst" on remaining kidney.  The cyst was imaged but not commented on in my Sept CT so the oncologist wanted another scan to compare and decide upon if there was any growth.  Nervous?...some, but it seems a bit outside my control so I deal with what I have direct control over and hope for the best with the rest.  I wont get the results from the Dr until next week so I have to play the waiting game this time, however I suspect if they see trouble they will call me sooner.  No news being good news hopefully.

Comments

  • rainsandpours
    rainsandpours Member Posts: 136
    good luck tomorrow!  Try to

    good luck tomorrow!  Try to find your happy place.  I had my CT today, and interestingly, they never asked about my GFR.  It was 84 in early April, and hasnt been checked since. 

     

    Not sure what to tell you about your level, but it's not unexpected to be low since you only have one kidney.  Dehydration certainly has an effect on it.  May drink some Electrolyte or Gatorade or something to help balance your fluid levels? 

  • Djinnie
    Djinnie Member Posts: 945
    Scan time!

    All the best Skagway, I am sure your creatinine levels were effected because you weren't hydrated enough. That was some pretty long heavy work in hot sun! You have such a good attitude, I hope you receive good news next week!

    Djinnie x

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    The Wait

    Apointment went well yesterday.  The XRay tech was kind enough to fix me a cup of coffee after the procedure.  This was from a Kurig machine and really hit the spot.  As a old Navy guy, coffee pretty much runs in my veins.  Thanks for the encouragement Dhin.  I, like so many fighting this disease, have a lot riding on NED.  I continue to make plans for life at All Ahead Flank speed all the while realizing that my visability dosent extend to the horizon anymore.  A busy week ahead to keep my mind off matters. 

    To all the surviovrs of this esteemed Forum: hoping everyone has an exceptional Memorial Day weekend!

  • foxhd
    foxhd Member Posts: 3,181 Member

    The Wait

    Apointment went well yesterday.  The XRay tech was kind enough to fix me a cup of coffee after the procedure.  This was from a Kurig machine and really hit the spot.  As a old Navy guy, coffee pretty much runs in my veins.  Thanks for the encouragement Dhin.  I, like so many fighting this disease, have a lot riding on NED.  I continue to make plans for life at All Ahead Flank speed all the while realizing that my visability dosent extend to the horizon anymore.  A busy week ahead to keep my mind off matters. 

    To all the surviovrs of this esteemed Forum: hoping everyone has an exceptional Memorial Day weekend!

    NED

    Is the goal for all of us. But the reality for many is that it will be present for the rest of our lives. But it will be just a chronic condition and managed like diabetes. I have grown to accept that. I hope I'm right. Keep doing well Jack.

  • twinthings
    twinthings Member Posts: 409

    The Wait

    Apointment went well yesterday.  The XRay tech was kind enough to fix me a cup of coffee after the procedure.  This was from a Kurig machine and really hit the spot.  As a old Navy guy, coffee pretty much runs in my veins.  Thanks for the encouragement Dhin.  I, like so many fighting this disease, have a lot riding on NED.  I continue to make plans for life at All Ahead Flank speed all the while realizing that my visability dosent extend to the horizon anymore.  A busy week ahead to keep my mind off matters. 

    To all the surviovrs of this esteemed Forum: hoping everyone has an exceptional Memorial Day weekend!

    Hope all goes well with the

    Hope all goes well with the results and hopefully, you won't have to wait too long before you get them. 

    Keep us posted.

     

    Sindy

  • safado
    safado Member Posts: 17
    foxhd said:

    NED

    Is the goal for all of us. But the reality for many is that it will be present for the rest of our lives. But it will be just a chronic condition and managed like diabetes. I have grown to accept that. I hope I'm right. Keep doing well Jack.

    NED?

    Newbie here - not familiar with the acronyms.

    I'm getting the idea that NED is one of the better ones!

  • Djinnie
    Djinnie Member Posts: 945
    safado said:

    NED?

    Newbie here - not familiar with the acronyms.

    I'm getting the idea that NED is one of the better ones!

    A Separate Fresh Posting!

    Safado, I am sorry you have had to join us, but you can be sure to get a lot of support from members here. It might be an idea to start a fresh post with regards to your cancer experience. It is a little lost posted under the older posts.

    Djinnie x

  • GSRon
    GSRon Member Posts: 1,303 Member
    safado said:

    NED?

    Newbie here - not familiar with the acronyms.

    I'm getting the idea that NED is one of the better ones!

    Safado, in the same area as

    Safado, in the same area as you put in your picture you can put in your Cancer info so it will not have to be repeated each time.  OK, NED or more correct (to me) is NVED, for No Visible Evidence of Disease.   Some lessor Doctors tell their patients "they got it all" thus implying they are cured.  Sadly this is not always correct.  They got all they saw, but...  So NED or NVED is a persons status if they are Stage 3 or less, post surgery.  Suggest you stay away from "prognosis" internet sites... some give some pretty bad info, like when it comes to prognosis.  

    Feel free to as questions.. but a couple of the other posts you replied to were many years old.  People from 2009 may no longer be active on this site.  And sadly a couple are now gone..   Sometimes people get over the major fear of having Cancer and move on living.. a great idea, especially for the early stage people.  People like me with Mets tend to hang around more often..

    Good Luck

    Ron

  • safado
    safado Member Posts: 17
    GSRon said:

    Safado, in the same area as

    Safado, in the same area as you put in your picture you can put in your Cancer info so it will not have to be repeated each time.  OK, NED or more correct (to me) is NVED, for No Visible Evidence of Disease.   Some lessor Doctors tell their patients "they got it all" thus implying they are cured.  Sadly this is not always correct.  They got all they saw, but...  So NED or NVED is a persons status if they are Stage 3 or less, post surgery.  Suggest you stay away from "prognosis" internet sites... some give some pretty bad info, like when it comes to prognosis.  

    Feel free to as questions.. but a couple of the other posts you replied to were many years old.  People from 2009 may no longer be active on this site.  And sadly a couple are now gone..   Sometimes people get over the major fear of having Cancer and move on living.. a great idea, especially for the early stage people.  People like me with Mets tend to hang around more often..

    Good Luck

    Ron

    Thanks Ron, et al.
    Part of

    Thanks Ron, et al.


    Part of being a noob is learning my way around this site and how it works.  I appreciate the pointers.  I've created a profile to go with the picture.

    Looking forward to the two-way support street with new friends!

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    NED

    Well the good news is "without evidence of nodal or bony metastasis".  Much relieved of course to have confirmed what I had every  reason suspect would be the case.  All my plans for changes in career and future remain "a go".. Good news for sure but it was delievered as a prelude to a discussion that has me somewhat disappointed. 

    It was suggested that I would not need further scans. When I mentioned that RCC was known for being tricky, the Onc looked up the standard of care online and of course it said twice yearly for the first two years and annually for five years for Stage I with clear margins.  The onc was concerned about the toll the contrast was taking on my remaining kidney.  Yearly scans from this point were suggested by my Onc.  My surgery was 8 months ago. I am good with starting the yearly scan protocol early, but my concern at the end was that Onc just dos'nt seem to have the grasp on kidney cancer that I would expect.  Additionally, when we discussed the scans it was apparent to me that the Onc was depending solely on the interpretation of the radiologist.  I did not get the sense that he had even looked at the scans.  Up shot is that I will be looking for a new Onc due to lack of confidence.

    On a side note: the radiologist mentioned the presence of diverticulitis without the presence of diverticulosis on the report.  Has anyone seen this comment on there own CTs?

    Thanks, for every ones concern.  Jack

  • APny
    APny Member Posts: 1,995 Member

    NED

    Well the good news is "without evidence of nodal or bony metastasis".  Much relieved of course to have confirmed what I had every  reason suspect would be the case.  All my plans for changes in career and future remain "a go".. Good news for sure but it was delievered as a prelude to a discussion that has me somewhat disappointed. 

    It was suggested that I would not need further scans. When I mentioned that RCC was known for being tricky, the Onc looked up the standard of care online and of course it said twice yearly for the first two years and annually for five years for Stage I with clear margins.  The onc was concerned about the toll the contrast was taking on my remaining kidney.  Yearly scans from this point were suggested by my Onc.  My surgery was 8 months ago. I am good with starting the yearly scan protocol early, but my concern at the end was that Onc just dos'nt seem to have the grasp on kidney cancer that I would expect.  Additionally, when we discussed the scans it was apparent to me that the Onc was depending solely on the interpretation of the radiologist.  I did not get the sense that he had even looked at the scans.  Up shot is that I will be looking for a new Onc due to lack of confidence.

    On a side note: the radiologist mentioned the presence of diverticulitis without the presence of diverticulosis on the report.  Has anyone seen this comment on there own CTs?

    Thanks, for every ones concern.  Jack

    Glad to hear your scans were

    Glad to hear your scans were good. Are you sure you don't have it reversed? It should be diverticulosis wihtout the presence of diverticulitis. Diverticulosis is pretty common. It's little pockets or pouches on your colon. Most of the time you don't even know they're there. If they become infected, then it's diverticulitis. So what I think your scan is saying that they saw the pockets (diverticula) but without any infection (diverticulitis).  My husband had to have surgery because his became infected three times within a year or two so they removed the part of the colon that had all these pockets, then reattached the colon.

  • Billy's Wife
    Billy's Wife Member Posts: 52
    Your instincts about you onc

    Your instincts about you onc are dead on --go with it!  My husband had scans done every three months for first year then six months for the second year  then dropped to one year.  THAT was a critical year and a critical error!  The year that he dropped to one year was the year that his first bone met was growing.  If he had gone sooner they would have caught it sooner.  I can't tell you how upset we were about the lost time, you just can't get it back! 

     Personally I think the concern about the contrast is minimal by comparision and shouldn't be a reason to cut back on scans unless critical.   Hydration is key and cannot be overstated-it is simple so just be sure to pay attention to it!

    Trust your gut! You know what is best for you and you are the only one who will live with the consequences!

    Find an oncologist you can comunicate with even if you have to search a bit.  The last one my husband found was the most attentive and truly cared.  They are out there -- just search a bit it will be worth it!

    Prayers and Good Luck,

    Arleen 

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    APny said:

    Glad to hear your scans were

    Glad to hear your scans were good. Are you sure you don't have it reversed? It should be diverticulosis wihtout the presence of diverticulitis. Diverticulosis is pretty common. It's little pockets or pouches on your colon. Most of the time you don't even know they're there. If they become infected, then it's diverticulitis. So what I think your scan is saying that they saw the pockets (diverticula) but without any infection (diverticulitis).  My husband had to have surgery because his became infected three times within a year or two so they removed the part of the colon that had all these pockets, then reattached the colon.

    Apny,  You are correct I got it backwards.  I have diverticulosis wihtout the presence of diverticulitis.  I looked it up and I have had no symptoms but I guess I need to watch my diet as a precaution.  I have a coworker who has had this condition seriously so I know its not something you want to have occur.  I just wondered if all the movement of ones bowel during the operation could have an impact? I had always been known for my ability to eat almost anything without effect. This attribute has served well in eating spicy foods. 

    Regards the Onc,  I know this guy is busy with patients that are really sick, but I just get the feeling that he doesnt see a reason to invest time in my case becuse he expects there to be no mets.  I hope he is right, but I know what "assume" spells.  I am going to find an onc that is more interested in my case until time proves there is no need.

  • sblairc
    sblairc Member Posts: 585 Member
    Good news on scans, glad you are switching oncs

    Good news on the scans, glad to hear. As for the doc, while I don't expect doctors to know everything off the top of their heads but the fact he had to look up the standard of care for your cancer online suggests his knowledge of RCC is limited. My opinion, anyways.

    I'm glad you have are switching doctors now. I think the experiences shared by so many here have been SO AMAZING at helping some of us newer people make better decisions. Thank you everyone for this!

    Rignt now, my husband is under the care of a oncologist (7 months post radical neph) and we feel he has a good knowledge of cancer in general but I personally think he is less knowledgable about kidney cancer than the urologic surgeon we had (and loved dearly). At this point since my husband is NED, we are continuing with the onc we have but we have already determined that if anything becomes suspect we will need to switch not only doctors but medical groups, since the most knowedgable doc in our area is out of our network. Sigh!

  • Jan4you
    Jan4you Member Posts: 1,330 Member

    Apny,  You are correct I got it backwards.  I have diverticulosis wihtout the presence of diverticulitis.  I looked it up and I have had no symptoms but I guess I need to watch my diet as a precaution.  I have a coworker who has had this condition seriously so I know its not something you want to have occur.  I just wondered if all the movement of ones bowel during the operation could have an impact? I had always been known for my ability to eat almost anything without effect. This attribute has served well in eating spicy foods. 

    Regards the Onc,  I know this guy is busy with patients that are really sick, but I just get the feeling that he doesnt see a reason to invest time in my case becuse he expects there to be no mets.  I hope he is right, but I know what "assume" spells.  I am going to find an onc that is more interested in my case until time proves there is no need.

    Glad you changed docs, and

    Glad you changed docs, and have good scans. I know this is a process and journey, but if it weren't for this site, not sure what to do sometimes.

    Hope you get a doc who will listen and follow you with the care you deserve!

     

    Warmly, Jan