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Chipmaker
Chipmaker Member Posts: 9

Good morning all, first I have been a lurker for 7 months and really appreicate the knowlage and compassion found on this forum. 

My situation:

65 YO male in good health diagnosed with Prostate cancer in 2016 and treated with SBRT in Nov 2016 which appears (at this time) to be sucessfull with virtualy no side effects.

during a CT scan for posible IBS in Dec 2017 it was discovered that I had a 1.8 x 1.8 CM solid mass on my right kidney consistent with RCC. Had an appointment with my 

URO at UAB in Birmingham Al, in January 2018. His suggestion at that time was active surveillance for 6 mo which I agreed with. I had the 6 mo scan on the 3rd and met with the URO

yesterday and the mass had grown to 1.8 x 2.3, which  as I understand it about double what the yearly growth typicaly is. His opinion is that it needs to be delt with because of the growth

rate . He proposed two options partial Neph or Cyroblation. He compaired my choice like looking at a menu at a resturant there is more than one thing to eat and all

are potiently good. I understand the cure rates are about the same with Cyro being a little less but with that said the numbers do not take into account that Cyro can be repeated if necessary.

I would appreicate any info you guys (and gals) can share in order to help me make a informed decision. I have learned alot during my PCa journey about being my own best advociate and

understand that knowlage is the best thing any of us can get in these crazy journeys we are unfortuinate to be on.

God bless

Perry

P.S. no spell check, sorry

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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Good start

    Perry,

     

    You are already at the best Medical facility in Alabama.  I visited a patiet there in the late 70's.

    Mine was a full neph almost 16 years ago before they had cyro or partials. From reading this board over the years I have seen morre than a few posts complaining abour cyro. On the otherhand a partial is still major surgery when you are 65 years young. I am almost 10 years older now. As  far as your prognosis you should be able to live to your normal life expectancy with such a small tulor being removed  Don't get too hung up on the growth as the CT is 3 dimensional with less than perfect accurack a5mm is a very small measurement. Sending good karma for your journey.

     

    icemantoo

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206
    I don't

    Have much knowledge about cyro but the minute I heard cancer I wanted the whole thing OUT.  Beause of the location into renal sinus 2.5 mass -the whole kidney was removed-I was happy although my Dr. did say he would try not to remove the whole thing  he did what was best for a good outcome and me.  If you have confidence in your Dr. let him steer you in the right direction-and with some help from the people here you will with g-ds help make the right decision-good luck-June

  • Retcenturion
    Retcenturion Member Posts: 240
    Your experience will help

    You've been given 2 diagnoses of cancer.. 1 was enough for me. I had a full Neph with 1 choice available. The surgery was not fun but not as bad as I had imagined if you choose surgery. I think the decision you make will be the right 1 for you. There are many here who have each 1 and can answer your questions Keep us posted..Sending positive thoughts your way.

  • APny
    APny Member Posts: 1,995 Member
    Everyone has to do what they

    Everyone has to do what they're most comfortable with after consulting experts. My surgeon at Sloan Kettering discouraged cryo for many reasons and I agreed with him. He said the gold standard is surgery and cryo is best reserved for those who are much older and not good surgery candidates.  All the best regardless of what you decide.

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    By way of background, my

    By way of background, my lesion was about 1.5cm and also on the right kidney.  It was discovered in December, 2013 and, like you, I was told active surveillance was the way to go, which I did.  Two and a half years later and a few ultransound and CT scans later, an ultrasound found it had grown to 1.8, so the urologic oncologist said let's get it out.  Like you, I was offered cryo and a robotic partial.  At the time (mid-2016), the success rate of the cryo was estimated to be in the low 90% range, while the surgery had a 99% success rate.  The uroogic oncologist I was seeing suggested the surgery was better, as not only did it have a higher success rate, it also had the benefit of getting the damn thing out and allowing it to be very thoroughly examined by a pathologist.  (Mine was a low grade chromophobe renal cell carcinoma, which, I was told, rarely recurs, rarely spreads and is very slow growing.)  The surgeon I got also verified the success rates and, when I got out of surgery and he saw me the next morning, he said the success rate for my type of cancer was virtually 100% (which doesn't mean I still don't get anxious when scan time comes up).

    Some things to consider.  Given that yours grew at a faster rate than mine, you might want to consider the surgery just to get the thing analyzed, thereby having a better idea of how to monitor you in the future.  On the other hand, surgery is surgery and surgery is never really pleasant.

    There's no right anwer for you.  It's pretty much a matter of personal comfort.

  • donna_lee
    donna_lee Member Posts: 1,023 Member
    My attitude has always been...

    If it can be removed entirely, get the sucker out of there.  Even it it's just a partial with clean margins, I would be more comfortable with that than ablation.

    UAB is a good place to be; and my nephew and family live in B'ham.

    donna_lee

     

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    No Brainer

    As Retcenturion ( who I would trust  with my life) says this is your second time round the merry go round 

    Do not risk it

    Cyro might work but it might not..

    The great thing about the surgery it you know everything will be taken away and you will get a full report on the fecker

    size

    type

    location 

     if you are reasonably fit and well do the surgery

    its not easy...but doable. ( I am the worst patient in the World). it’s takes a while before you are back to your old self but  a cancer free old self

    Good Luck

    Annie

  • Manufred
    Manufred Member Posts: 241
    Go Annie

    Couldn't have said it better myself.  Don't mess around with it.

  • stub1969
    stub1969 Member Posts: 954 Member
    Advances

    As Icemann says, back when he had his nephrectomy they only performed full nephrectomies.  Partials started coming around as technology advanced.  Now cyroblation is becoming more common.  I think it really comes down to what you're comfortable with.  Take it out or kill it where it is.

    Good luck with your decision and with the procedure.

    Stub

  • Cinnamongirl
    Cinnamongirl Member Posts: 199
    Just my opinion

    I had s radical nephrectomy on my left kidney in Dec 2017 and on June 25th had a cryoablation preformed on my right kidney to removed a suspicious spot.

    I would have an ablation any day over the nephrectomy surgery. The recovery from the nephrectomy is long where as with the cryo you are back at it in 24hrs. Especially when dealing with something so small. Feel free to message me with any questions you might have.

    These decisions can be tough.

    All the best Cin

  • yellow lotus
    yellow lotus Member Posts: 15
    edited July 2018 #12
    I had a tumor of 1.8 cm top

    I had a tumor of 1.8 cm top of Left kidney removed July 5 laproscopically, Da Vinci robotic assisted. I am 67 years old. I was discharged within 24 hours and so far my pain has been controlled by Tylenol although I did take a Victorian at bedtime to help me sleep. My surgeon said they only had to remove 1% of the kidney and cure rate with surgery alone was in the 90+% range. Mine was clear cell renal cell carcinoma. He'll discuss scan frequency, follow ups etc at post op  visit. I took into consideration the advice of all the veterans here along with my doctor's recommendations and am happy with my well informed decision. You have come to the right place!

  • Chipmaker
    Chipmaker Member Posts: 9
    edited July 2018 #13

    I had a tumor of 1.8 cm top

    I had a tumor of 1.8 cm top of Left kidney removed July 5 laproscopically, Da Vinci robotic assisted. I am 67 years old. I was discharged within 24 hours and so far my pain has been controlled by Tylenol although I did take a Victorian at bedtime to help me sleep. My surgeon said they only had to remove 1% of the kidney and cure rate with surgery alone was in the 90+% range. Mine was clear cell renal cell carcinoma. He'll discuss scan frequency, follow ups etc at post op  visit. I took into consideration the advice of all the veterans here along with my doctor's recommendations and am happy with my well informed decision. You have come to the right place!

    Thank you all for the info

    Thank you all for the info and good wishes, I think like my PCa that after the decision is made on treatment the stress leval goes down. I have an appointment with a Interventional Radiologist at UAB on the 25th of this month to discuss his take on Cyro. I am not one of the mindset that has to have it out, if it is killed in place I am ok with that. As with my treatment for PCa the technology has changed to make less invasive treatments as good as (in some cases) as the gold standard but as the saying goes you only get one chance to do it right the first time, so I will be studying hard. I understand that no two cases are the same just like us but the experience of others in invaluable in the decision making process. Again thank you all and I will keep you informed.

    Perry

  • Chipmaker
    Chipmaker Member Posts: 9
    edited July 2018 #14
    Good afternoon all, I met

    Good afternoon all, I met with the Interventional Radiologest today and have decided on CRYO. All of the studies that I have found and the info from today make me believe that with my circumstances this is as good as but will be less invasive than surgery. He typically sends patients home the same day but since I will have about a 2 hr drive and we wouldn't get out of Birmingham until around 4-5 in the afternoon we decided to stay one night at the hospital. Not sure of the date yet but I am ready to  "Geter Done".  Thanks to all for the input and I will keep in touch.

    Perry

  • stub1969
    stub1969 Member Posts: 954 Member
    Trust!

    One of the bigger hurdles we face during this traumatic time is putting our faith and trust in the medical professionals that will be treating us.  With so many new advances and techniques at their finger tips we get caught up in the question, "What is the right method for treating "me"?""  I'm glad you have this confidence moving forward---it will help carry you through the procedure. 

    Wishing you the best--keep us updated.

    Stub 

  • todd121
    todd121 Member Posts: 1,448
    Chipmaker said:

    Good afternoon all, I met

    Good afternoon all, I met with the Interventional Radiologest today and have decided on CRYO. All of the studies that I have found and the info from today make me believe that with my circumstances this is as good as but will be less invasive than surgery. He typically sends patients home the same day but since I will have about a 2 hr drive and we wouldn't get out of Birmingham until around 4-5 in the afternoon we decided to stay one night at the hospital. Not sure of the date yet but I am ready to  "Geter Done".  Thanks to all for the input and I will keep in touch.

    Perry

    Pathology Report

    My biggest concern with cryo would be the lack of a full pathology on the tumor. This is how we find out what we really had. It tells us if it was RCC or not, what type of RCC, the staging, and margins (whether they got it all). This information is helpful (I think) in the future should you have a recurrence somewhere else.

    The doc that's recommending cryo, do they not find a fully pathology report on the tumor to be that important? I've never seen this fully explained. Without this, will you even know if you had cancer or not? And how will they decide your followup care? The prognosis for someone with Stage 3 clear cell RCC Grade 3-4 is much different than someone with Stage 1 ccRCC Grade 1 (and there are several other types that are more aggressive and need to be treated differently if there is metastatis at a later date).

    Best to you,

    Todd

  • Chipmaker
    Chipmaker Member Posts: 9
    edited July 2018 #17
    stub1969 said:

    Trust!

    One of the bigger hurdles we face during this traumatic time is putting our faith and trust in the medical professionals that will be treating us.  With so many new advances and techniques at their finger tips we get caught up in the question, "What is the right method for treating "me"?""  I'm glad you have this confidence moving forward---it will help carry you through the procedure. 

    Wishing you the best--keep us updated.

    Stub 

    Todd the Dr. will do a biopsy

    Todd the Dr. will do a biopsy of the tumor before the ablation although it won't be the same as seeing it on the table if it were  removed. I believe that with the advances in imaging they can see the tumor well enough to let the "Ice Ball" overlap enough to give a sufficent margin. I guess it is just a matter of what each of us can live with, for example with my Pca I didn't have to see the prostate removed and have a path report to belive that my treatment was curative.  As stub1969 said it is about trust and I am trusting that I made the right decision but only time will tell on either of my journeys. Thanks for the input

    Perry

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Sorry

    You don’t need it but another dissenting voice

    prostate and renal cancer are two completely different cancers

    the majority of prostate is a very slow growing noN aggressive cancer

    as you know a number of men are found with prosate cancer after death and they were never aware of it and it wasn’t the cause of death

    rcc is totally different.  ...it’s. A sneaky horrible disease

    Your cyst has grown which means it has an 80 to 90% of being cancer

    it is still very small so the Cyro might work

    i have read of a number of people who were told all fine only for it to come back and more aggressive 

    however this is  2018 so the technology might be vastly improved 

    I hope it is

    good luck 

     

     

  • todd121
    todd121 Member Posts: 1,448
    Chipmaker said:

    Todd the Dr. will do a biopsy

    Todd the Dr. will do a biopsy of the tumor before the ablation although it won't be the same as seeing it on the table if it were  removed. I believe that with the advances in imaging they can see the tumor well enough to let the "Ice Ball" overlap enough to give a sufficent margin. I guess it is just a matter of what each of us can live with, for example with my Pca I didn't have to see the prostate removed and have a path report to belive that my treatment was curative.  As stub1969 said it is about trust and I am trusting that I made the right decision but only time will tell on either of my journeys. Thanks for the input

    Perry

    Biopsy

    As I understood, biopsies on kidney cancer have a high incidence of false negative. Based on size and location they can be fairly certain, at least, of the staging (and maybe the type). The biopsy might give them useful information regarding the type, but not the grade.

    Did you discuss this decision with a medical oncologist with RCC experience? It might be worth it to ask one. There are some very good urologic oncologists out there. However, we've also seen quite a few urologic oncologists downplay the risks and treatment of metastatic RCC simply because it's not their specialty.

    In my case, my urologic oncologist told me from imaging I was probably Stage 1. He did, at least, recommend a radical nephrectomy because of the location of the mass. The pathology came back Stage 3 Grade 3. So from what the urologic oncologist had told me I was suddenly "likely cured" from the pre-surgical advice given to me. After the pathology came back, the urologic oncologist was very optimistic still that I had been cured and the planned followups were minimal. I saw two medical oncologists that treat RCC patients, and they both agreed I had about a 60-70% chance of recurrence and that I should have close followups. They had studies to back up their belief. The urologic oncologist (a really good one, by the way) was just not that familiar with metastatic RCC. 2 years after my nephrectomy I had a recurrence in my adrenal gland and it was caught very early and removed.

    I've been really happy that I consulted with medical oncologists that are experts in RCC.

    Of course your situation is different. Your tumor is smaller. I don't know where it is. I've no idea how familiar your urologist is with RCC. There are urologists that know a lot about RCC, but most do not (because they send you to medical oncologists that specialize in systemic treatment if you end up with metastatic disease).

    Best to you,

    Todd

  • Chipmaker
    Chipmaker Member Posts: 9
    edited July 2018 #20

    Sorry

    You don’t need it but another dissenting voice

    prostate and renal cancer are two completely different cancers

    the majority of prostate is a very slow growing noN aggressive cancer

    as you know a number of men are found with prosate cancer after death and they were never aware of it and it wasn’t the cause of death

    rcc is totally different.  ...it’s. A sneaky horrible disease

    Your cyst has grown which means it has an 80 to 90% of being cancer

    it is still very small so the Cyro might work

    i have read of a number of people who were told all fine only for it to come back and more aggressive 

    however this is  2018 so the technology might be vastly improved 

    I hope it is

    good luck 

     

     

    Todd and Wehave thanks for

    Todd and Wehave thanks for the input. My mass is a Exophytic posterior right interpolar mass which translates to a mass on the outside of my kidney toward my back on the bottom. measuring 2.3 X 1.8 cm.  and I have been told that it is the perfect example for CRYO. The place where I will be treated is one of the best  kidney cancer and transplant centers in the southeast if not country. I have the upmost confidence in the team that will be treating me. From my research it appears that the long term reccurance rate for a tumor like mine is virtually the same with surgery or Cryoablation. There are numerous studies that support this. There are also studies that show 5 year cancer specific death at exactly the same 0%. (for T1NoMo) tumors with surgery vs cryo. I also questioned the accuracy of a biopsy and was told that with the guided biopsy procedures now the accuracy is better than 90%. I also understand that Pca and RCC are different animals and typically both are slow growing but every case and person is as different as clouds in the sky. All of that said my approach to these crappy hands I have been delt in the last couple of years is to go for cure with the least invasive and with fewest side effects possible. None of us know what the future holds and with Gods help I will deal with what happens then, then.

    Thanks

    Perry

  • todd121
    todd121 Member Posts: 1,448
    Chipmaker said:

    Todd and Wehave thanks for

    Todd and Wehave thanks for the input. My mass is a Exophytic posterior right interpolar mass which translates to a mass on the outside of my kidney toward my back on the bottom. measuring 2.3 X 1.8 cm.  and I have been told that it is the perfect example for CRYO. The place where I will be treated is one of the best  kidney cancer and transplant centers in the southeast if not country. I have the upmost confidence in the team that will be treating me. From my research it appears that the long term reccurance rate for a tumor like mine is virtually the same with surgery or Cryoablation. There are numerous studies that support this. There are also studies that show 5 year cancer specific death at exactly the same 0%. (for T1NoMo) tumors with surgery vs cryo. I also questioned the accuracy of a biopsy and was told that with the guided biopsy procedures now the accuracy is better than 90%. I also understand that Pca and RCC are different animals and typically both are slow growing but every case and person is as different as clouds in the sky. All of that said my approach to these crappy hands I have been delt in the last couple of years is to go for cure with the least invasive and with fewest side effects possible. None of us know what the future holds and with Gods help I will deal with what happens then, then.

    Thanks

    Perry

    Cryo

    Best of luck with the cryo. I hope it goes smoothly and gets it all and your done done with this after that! Please check back with us and let us know the results of the biopsy and how things are going.

    Best to you,

    Todd