Made it to two years-ish.

anmazon
anmazon Member Posts: 144
in Kidney Cancer #1

I haven't been here in a while.

Briefly, i had a radical right nephrectomy June 5, 2015.

I was feeling pretty confident having made it to my two-year anniversary.   Never really considered that my scans were scheduled on same day.

In a demonstration of ineptitude, my scan results showed up in my patient portal almost immediately, showing a "solid enhancing mass on the lower pole of the left kidney."  Docs didn't receive them until i asked them and they asked for results.

My urologist felt that this was too complex to deal with in new mexico, and suggested that i reach out to a center of excellence.  After some consideration, I chose MD Anderson in Houston.

I had an appointment with my onc this week, and he has scheduled me for an open partiail to remove the tumor on July 14.

He says it is not metastatic, and based on history is likely Clear Cell, as it was in my right kidney.  He says there is a 70 percent chance it is malignant.  it is 1.5 cm, so pretty fast growing.

I am freaked out.  Has anyone else had clear scans for two years, then have a non-metastatic tumor show up after two years of clear scans?

What is the recovery time for an open partial.


I know i've made the right choice going to MD Anderson, but i'm an absolute wreck.

Any guidance and prayers would be greatly appreciated.

Anmazon

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Comments

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #2
    I am sorry for your

    I am sorry for your troubles.  Regarding recovery time for an open partial--I was in on Thursday morning, walking Thursday evening around hospital ward.  Discharged on Saturday a.m.--which felt like the worst day for me.  On Monday, I walked 6 miles and continued that daily for my recovery.  So, for me, it was pretty quick.  I hope you have similar results.

  • anmazon
    anmazon Member Posts: 144
    #3
    Positive_Mental_Attitude said:

    I am sorry for your

    I am sorry for your troubles.  Regarding recovery time for an open partial--I was in on Thursday morning, walking Thursday evening around hospital ward.  Discharged on Saturday a.m.--which felt like the worst day for me.  On Monday, I walked 6 miles and continued that daily for my recovery.  So, for me, it was pretty quick.  I hope you have similar results.

    Two years-ish

    Thank you so much for your feedback..

     

    I Was back at work two and a half weeks after my laparoscopic right radical .  

    Now I have a better idea what to expect with an open partial.

    This is so scary 

     

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #4
    anmazon said:

    Two years-ish

    Thank you so much for your feedback..

     

    I Was back at work two and a half weeks after my laparoscopic right radical .  

    Now I have a better idea what to expect with an open partial.

    This is so scary 

     

    I have a desk job, and I was

    I have a desk job, and I was back after 3 weeks.  I worked from home with my laptop.  There was nothing else to do, as I don't watch TV, and I am not a big reader.  Doing work at home kept my mind off what had just happened.

  • Allochka
    Allochka Member Posts: 1,072 Member
    #5
    Positive_Mental_Attitude said:

    I have a desk job, and I was

    I have a desk job, and I was back after 3 weeks.  I worked from home with my laptop.  There was nothing else to do, as I don't watch TV, and I am not a big reader.  Doing work at home kept my mind off what had just happened.

    Sorry for recurrence...
    open

    Sorry for recurrence...

    open partial is not a scary thing at all. My fiance started working 1 month after surgery (desk job), and never had any major post-surgery issues.  Was not using any pain meds as of day 3 approx.

    you'll be all right after the surgery!

  • APny
    APny Member Posts: 1,995 Member
    #6
    Allochka said:

    Sorry for recurrence...
    open

    Sorry for recurrence...

    open partial is not a scary thing at all. My fiance started working 1 month after surgery (desk job), and never had any major post-surgery issues.  Was not using any pain meds as of day 3 approx.

    you'll be all right after the surgery!

    I am so sorry you're going

    I am so sorry you're going through this again. I also had an open partial by the same surgeon as Positive_Mental and my recovery was excellent. Surgery Monday, walking that same night, home on Wednesday, and sitting at my computer doing work on Thursday. Reading about others' lap and/or robotic surgeries I can't say mine was significantly different as far as pain and recovery is concerned. Wishing you the very best.

  • Limno
    Limno Member Posts: 24
    #7
    So sorry to read about your recurrance

    I had an open partial on April 24 on a T 1 B tumor.  Recovery was rapid and surprisingly pain free.  I was ready to work in three weeks and up for full physical activity in 6 weeks.   For the first two weeks I was pretty tired by early afternoon, and needed a nap.  The worst part of the procedure was the waiting.  I walked as much as I could in the weeks leading up to the surgery, which helped me to sleep well and improve strength and endurance.  Post surgery, I walked as  much as I could every day.   I started with a couple hundred yards and up to several miles/day.

    When I went for surgery, I was told the chance of recurrance was 3-5%.  I could live with those odds.  Two weeks later, my pathology report gave the tumor a grade 3/4 and the chance of recurrance particularly in the other kidney was 20%.  The greatest chance of recurrance was between 18 and 36 months.  So quite frankly, I am expecting the worst but hoping for the best.

    You are young. You have been through this before.  You are at a first class hospital.  You are in many thoughts and prayers.  You are going to be fine.

  • anmazon
    anmazon Member Posts: 144
    #8
    thank you

    Thank you all for the kind words and support.

    As with my surgery two years ago, the waiting is the hardest part.

    The only issue i had with MD was their recommendation to be there for 3 - 5 days for my first appointment.

    They were so efficient that they got everything done in one day. which, all things considered, is not too bad.  Just kind of hard on my elderly mother and me to fly out and turn around and fly back again right away.  Mom wants to go again next week, and I'm not sure she's up to it.  So we're trying to figure it all out.

    And now i have to wait.

    What matters most is that we need to get it out. and we are getting it out quickly.

     

  • foroughsh
    foroughsh Member Posts: 779 Member
    #9
    anmazon said:

    thank you

    Thank you all for the kind words and support.

    As with my surgery two years ago, the waiting is the hardest part.

    The only issue i had with MD was their recommendation to be there for 3 - 5 days for my first appointment.

    They were so efficient that they got everything done in one day. which, all things considered, is not too bad.  Just kind of hard on my elderly mother and me to fly out and turn around and fly back again right away.  Mom wants to go again next week, and I'm not sure she's up to it.  So we're trying to figure it all out.

    And now i have to wait.

    What matters most is that we need to get it out. and we are getting it out quickly.

     

     
    I'm sorry that you're going

     

    I'm sorry that you're going through this again but thanks for the follow ups to catch it soon, sooner is better.

     

    If it isn't metastasized and is a primary tumor then I think it might be in favor of VHL(von hipper lindau). It's inherited type of clear cell renal cell carcinoma. In this case the patient usually has primary tumors in her both kidneys at the same time or with few years interval. You can do some Genetic tests to make sure your case isn't VHL.

     

    RCC patients have 2% chance to have a primary tumor in theirs another kidney, it's not big chance but still more than ordinary people to have RCC in the first place.

     

    Wish you a successful happy uneventful surgery.

     

    Forough

     

     

     

     

  • APny
    APny Member Posts: 1,995 Member
    #10
    foroughsh said:

     
    I'm sorry that you're going

     

    I'm sorry that you're going through this again but thanks for the follow ups to catch it soon, sooner is better.

     

    If it isn't metastasized and is a primary tumor then I think it might be in favor of VHL(von hipper lindau). It's inherited type of clear cell renal cell carcinoma. In this case the patient usually has primary tumors in her both kidneys at the same time or with few years interval. You can do some Genetic tests to make sure your case isn't VHL.

     

    RCC patients have 2% chance to have a primary tumor in theirs another kidney, it's not big chance but still more than ordinary people to have RCC in the first place.

     

    Wish you a successful happy uneventful surgery.

     

    Forough

     

     

     

     

    I'm just curious. How can

    I'm just curious. How can they tell if the tumor in the left kidney is yet another primary RCC or if it's a met of the original tumor from her right kidney? Since the cells would be identical renal cells, I don't quite understand how they can differentiate another primary tumor from a met. In other words, I don't underestand how they know if you have a tumor in each kidney that they're both primaries and not mets of one. 

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #11
    I am so sorry to hear about

    I am so sorry to hear about your recurrence. It can't be easy - along with having to travel.

    I have the same question as Apny..How do they know the diagnosis? And that is not metastisized? I am not very good at the medical technical stuff, but that sounds a bit off.

    Thinking about you and keeping you in my prayers.

    Hugs

    Jojo

  • anmazon
    anmazon Member Posts: 144
    #12
    Thank you all so much for

    Thank you all so much for your kind words and feedback.

    That is a really good question about whether it is a new tumor or a met (could it be the time frame? Would mets show up before two years?).

    My urologist here at home was pretty certain that this was new.

    If I see him, I'll ask him.  Otherwise, I'll, check with the guy at MD.

    Great questions..

  • dhs1963
    dhs1963 Member Posts: 513
    #13
    Contact NIH ASAP

    Call Lindsey Middleton at NIH today.  (301) 402-7911...

    Recurrent RCC (non met) is an idicator of familial RCC.  More importantly, though is if these tumors keep popping up, you will quickly run out of kidney tissue.  In general, for a second (or more tumor), they have found that there is almost no risk of metastisis in when the tumor is less than 4 cm, as such, they typically do not recommend surgery for a second (small) tumor...watch and wait until it grows to about 3 cm, then cut it out.  (this is what they told my father, who now has 12 small masses on his kidney).  If you cut out each small tumor and they keep popping up, you will quickly need dialysis because there is no kidney left.

    The strategy is called active survailance.

  • APny
    APny Member Posts: 1,995 Member
    #14
    dhs1963 said:

    Contact NIH ASAP

    Call Lindsey Middleton at NIH today.  (301) 402-7911...

    Recurrent RCC (non met) is an idicator of familial RCC.  More importantly, though is if these tumors keep popping up, you will quickly run out of kidney tissue.  In general, for a second (or more tumor), they have found that there is almost no risk of metastisis in when the tumor is less than 4 cm, as such, they typically do not recommend surgery for a second (small) tumor...watch and wait until it grows to about 3 cm, then cut it out.  (this is what they told my father, who now has 12 small masses on his kidney).  If you cut out each small tumor and they keep popping up, you will quickly need dialysis because there is no kidney left.

    The strategy is called active survailance.

    Dhs, how can they tell with

    Dhs, how can they tell with your dad that they are recurring tumors and not mets from the original? Usually mets are identified by the tissue/cell structure. So if they find renal cells in your lung tumor they know it's a met and not lung cancer. But like my original question said, the cells in the recurrence tumor will be the same as in the primary, orginial one. So how do they tell it's another primary and not a met of the original? Right now they're monitoring a sub-centimeter lesion in the same kidney where the original tumor was removed from. If it turns out to be RCC how would they know it's not a met from left over cells? How would they know if it's yet another primary. I still don't get it but then I can be dense, lol.

  • anmazon
    anmazon Member Posts: 144
    #15
    APny said:

    Dhs, how can they tell with

    Dhs, how can they tell with your dad that they are recurring tumors and not mets from the original? Usually mets are identified by the tissue/cell structure. So if they find renal cells in your lung tumor they know it's a met and not lung cancer. But like my original question said, the cells in the recurrence tumor will be the same as in the primary, orginial one. So how do they tell it's another primary and not a met of the original? Right now they're monitoring a sub-centimeter lesion in the same kidney where the original tumor was removed from. If it turns out to be RCC how would they know it's not a met from left over cells? How would they know if it's yet another primary. I still don't get it but then I can be dense, lol.

    Coming up on six weeks out from surgery

    Well, I had an open partial at MD Anderson July 14.  Spent a week in hospital, a week with my mom.   Have been back to work for two weeks (only made it half-days the first week).

    Recovering remarkably well, and headed back to Houston for six-week follow up on Wednesday.

    Devastated to read about Neil and Djinnie. It seems that almost all the stalwarts from when I first joined have passed away. Though I'm thrilled to see that Fox is still kicking. 

     

    Please forgive my rather sporadic participation--though I'm happy to be cancer free again, I'm scared and distracted.  Wondering what's next, rather than appreciating this gift of life.

     

    Love to all.

     

    Anmazon

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    #16
    anmazon said:

    Coming up on six weeks out from surgery

    Well, I had an open partial at MD Anderson July 14.  Spent a week in hospital, a week with my mom.   Have been back to work for two weeks (only made it half-days the first week).

    Recovering remarkably well, and headed back to Houston for six-week follow up on Wednesday.

    Devastated to read about Neil and Djinnie. It seems that almost all the stalwarts from when I first joined have passed away. Though I'm thrilled to see that Fox is still kicking. 

     

    Please forgive my rather sporadic participation--though I'm happy to be cancer free again, I'm scared and distracted.  Wondering what's next, rather than appreciating this gift of life.

     

    Love to all.

     

    Anmazon

    Congrats!

    Glad you are clear of your surgery and on the mend.  I too am in New Mexico, and I have "cysts" on my remaining kidney.  One cyst is roughly 1.2cm and the other is tiny.  According to my Oncologist these are both cyst and nothing to be concerened with.  Did you get your  results on your pathology yet?  I am curious too with regards to whether it is a met or not.  Supposedly it is rare to met to the other kidney except in the case of genetic predisposition.   Best of luck!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #17
    Skagway Jack said:

    Congrats!

    Glad you are clear of your surgery and on the mend.  I too am in New Mexico, and I have "cysts" on my remaining kidney.  One cyst is roughly 1.2cm and the other is tiny.  According to my Oncologist these are both cyst and nothing to be concerened with.  Did you get your  results on your pathology yet?  I am curious too with regards to whether it is a met or not.  Supposedly it is rare to met to the other kidney except in the case of genetic predisposition.   Best of luck!

    Just get well

    Anmazon. Sounds like your doc made a good referral. And yes, I am still kicking.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #18
    foxhd said:

    Just get well

    Anmazon. Sounds like your doc made a good referral. And yes, I am still kicking.

    Glad to hear your surgery

    Glad to hear your surgery went well. Hoping your recovery continues to go well. Please keep us posted on your results.

    Try not to get discouraged. I know this is scary. We are here for you - cheering you on!

    Hugs

    Jojo

  • anmazon
    anmazon Member Posts: 144
    #19
    foxhd said:

    Just get well

    Anmazon. Sounds like your doc made a good referral. And yes, I am still kicking.

    Kicking

    Fox, I'm thrilled that you're still kicking. 

     

    And God bless my urologist for sending me out of state.   This is not my first rodeo, and you would think I'd be better at this. 

     

    Six-week follow-up on Wednesday.  

  • anmazon
    anmazon Member Posts: 144
    #20
    Skagway Jack said:

    Congrats!

    Glad you are clear of your surgery and on the mend.  I too am in New Mexico, and I have "cysts" on my remaining kidney.  One cyst is roughly 1.2cm and the other is tiny.  According to my Oncologist these are both cyst and nothing to be concerened with.  Did you get your  results on your pathology yet?  I am curious too with regards to whether it is a met or not.  Supposedly it is rare to met to the other kidney except in the case of genetic predisposition.   Best of luck!

    Thanks, Jack

    Where in NM are you?

    I've got my pathology results and it sounds like it was pretty ugly down there.  2 cm, with evidence of necrosis and hemorrhage. 

    I understand that mets to the other kidney are very rare.  I'll talk to my urologist on wednesday and see if he can clarify.

     

    Thanks for the wishesJack!

     

     

    I

  • anmazon
    anmazon Member Posts: 144
    #21
    Jojo61 said:

    Glad to hear your surgery

    Glad to hear your surgery went well. Hoping your recovery continues to go well. Please keep us posted on your results.

    Try not to get discouraged. I know this is scary. We are here for you - cheering you on!

    Hugs

    Jojo

    Thanks, JoJo

    I really am doing well--just kind of freaked out--recognizing my mortality I suppose. 

    I'll let you know what Dr. Wood has to say on Wednesday. 

     

    Hugs back, and I'm cheering for you too!

     

    A

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