WOW Did Not Expect This! :(

Bonngo
Bonngo Member Posts: 79

Hi Everyone, 

I went back yesterday for my two week post-op check.  I have to say this round has been a little easier recovery as far as the incision is concerned.  

My gfr improved a tiny bit up from 39 to 43.  I was then told that the tumor was not able to be classified!  They are getting my slides from three years ago at Dartmouth-Hitchcock Medical Center and sending them along with the slides from this new tumor to Johns Hopkins Medical Center.  I was told that this is extremely rare.  Also, the tumor had invaded the perinephric fatty area as well as the lymphovascular space and graded as a T3a. 

This is very difficult trying to take all in going from three years ago being told only 5-10% chance of recurrence to oh now you have Stage III renal cancer and oh by the way we really can't tell what your tumor is. Makes me wonder if the entire kidney should have been removed three years ago.

 The course of action now will be every three months I will have a chest c-xray, blood work, and alternating CT Scan and MRI.  I know there are some of you here with way worse circumstances and I thank you for allowing me to have my little pity party before I pull up the boot straps and say to myself ok time to carry on!

~Bonnie

 

 

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Comments

  • APny
    APny Member Posts: 1,995 Member
    I am so sorry to hear that;

    I am so sorry to hear that; must have been very hard to digest suddenly being told it's stage 3. I definitelly think you're entitled to a pity party. It sucks thinking that the original surgery was the end of it, only to have to face this 3 years later. Since this tumor is a different type than what you originally had ((I assume you had clear cell?) I'm not sure a complete nephrectomy would have done anything as it doesn't sound like a recurrance of the original cancer. I'm sure they'll sort it out and the one good thing is that they did remove it all and it's not gone anywhere outside of that area. So hopefully with careful and frequent monitoring this time it really will be the end of it. You're in my thoughts and prayers, Bonnie.

  • jason.2835
    jason.2835 Member Posts: 337 Member
    WOW, weird!

    Bonnie,

    That is pretty weird... hopefully the big guns at Johns Hopkins can classify it as something nonaggressive.  The more I hear from people that had partials, the more that I feel fortunate that they just clipped the whole thing out for me last year.  I'm really hoping that this comes back as something positive.  Like you said, it could be worse... Now that it is truly "all out," you can soon move on from it.

    - Jay 

  • APny
    APny Member Posts: 1,995 Member

    WOW, weird!

    Bonnie,

    That is pretty weird... hopefully the big guns at Johns Hopkins can classify it as something nonaggressive.  The more I hear from people that had partials, the more that I feel fortunate that they just clipped the whole thing out for me last year.  I'm really hoping that this comes back as something positive.  Like you said, it could be worse... Now that it is truly "all out," you can soon move on from it.

    - Jay 

    What scares me is how these

    What scares me is how these follow up scans we get after surgery keep missing growths until they’re as big as a golf ball and invade neighboring tissues and glands. Why didn’t the routine CT scans pick it up when it was still very small and non-invasive? I’m starting to lose faith in the whole radiology profession L

  • Bonngo
    Bonngo Member Posts: 79

    WOW, weird!

    Bonnie,

    That is pretty weird... hopefully the big guns at Johns Hopkins can classify it as something nonaggressive.  The more I hear from people that had partials, the more that I feel fortunate that they just clipped the whole thing out for me last year.  I'm really hoping that this comes back as something positive.  Like you said, it could be worse... Now that it is truly "all out," you can soon move on from it.

    - Jay 

    Thanks

    Thanks, Jay.  I totally agree in hoping that it is identified as non-aggresive and also that it was wise you had your entire kideny removed.  Best wishes to you.

  • Bonngo
    Bonngo Member Posts: 79
    APny said:

    What scares me is how these

    What scares me is how these follow up scans we get after surgery keep missing growths until they’re as big as a golf ball and invade neighboring tissues and glands. Why didn’t the routine CT scans pick it up when it was still very small and non-invasive? I’m starting to lose faith in the whole radiology profession L

    Scanning

    Agreed APny! It is concerning that even though I followed up with the "recommended" guidelines for CT scan every other year, it makes me wonder if the guidelines are wrong.  My last CT scan was in Feb 2013 and was perfectly clean.  They are so worried about too much radiation that they risk people's lives by stretching it out too much.  Now look, I have to have something done every three months which involves radiation!  I am sad to think this could have all been avoided.  I'm just praying that Johns Hopkins can identify this tumor so we know what we are dealing with.  Meanwhile, I am trying to do everything I can to keep myself strong and healthy.  Thank you for your support, I sure appreciate being able to talk to others who understand.

    ~Bonnie

  • foroughsh
    foroughsh Member Posts: 779
    I'm sorry for stage III news,

    I'm sorry for stage III news, it's not easy  to digest it! I 'm wondering how they have missed it in your last follow up scans! Was it too small? The good news is your recovery is fast, thanks God for this part. Hope they finally understand the type of it and definetly praying for nonaggressive type.

  • Bonngo
    Bonngo Member Posts: 79
    2013 Scan Clean

    My last CT scan (on schedule) was perfectly clean.  I'm not sure if the every other year for CT scan guidelines are enough.

  • sblairc
    sblairc Member Posts: 585
    Bonngo said:

    2013 Scan Clean

    My last CT scan (on schedule) was perfectly clean.  I'm not sure if the every other year for CT scan guidelines are enough.

    So sorry you are going through this. And about scans. . .

    Bonnie, I am so sorry you are going through this. My husband is Stage 3, he had a Full Nephrectomy. After 18 months NED his ONCOLOGIST wanted to go to yearly scans. UHH, No way in hell.

     

    I get their concern with radiation risk being balanced with recurrence risk for partials. The statistics support the plan for scan frequency with partials.  BUT I just don't know if  a "one size fits all" approach is beneficial for renal cancer since it is so unpredictable in nature. That's my problem with all of it. Statistics are just that. My husband was 0.2 cm away from a Stage 4 diagnosis of tumor invading beyond Gerota's Fascia. That's just too close for comfort in my opinion to not advocate for yearlly scans for at least 4 years. I'll pay for it myself if I have to

  • Bonngo
    Bonngo Member Posts: 79
    sblairc said:

    So sorry you are going through this. And about scans. . .

    Bonnie, I am so sorry you are going through this. My husband is Stage 3, he had a Full Nephrectomy. After 18 months NED his ONCOLOGIST wanted to go to yearly scans. UHH, No way in hell.

     

    I get their concern with radiation risk being balanced with recurrence risk for partials. The statistics support the plan for scan frequency with partials.  BUT I just don't know if  a "one size fits all" approach is beneficial for renal cancer since it is so unpredictable in nature. That's my problem with all of it. Statistics are just that. My husband was 0.2 cm away from a Stage 4 diagnosis of tumor invading beyond Gerota's Fascia. That's just too close for comfort in my opinion to not advocate for yearlly scans for at least 4 years. I'll pay for it myself if I have to

    Amen to that!

    Amen to that!

  • APny
    APny Member Posts: 1,995 Member
    sblairc said:

    So sorry you are going through this. And about scans. . .

    Bonnie, I am so sorry you are going through this. My husband is Stage 3, he had a Full Nephrectomy. After 18 months NED his ONCOLOGIST wanted to go to yearly scans. UHH, No way in hell.

     

    I get their concern with radiation risk being balanced with recurrence risk for partials. The statistics support the plan for scan frequency with partials.  BUT I just don't know if  a "one size fits all" approach is beneficial for renal cancer since it is so unpredictable in nature. That's my problem with all of it. Statistics are just that. My husband was 0.2 cm away from a Stage 4 diagnosis of tumor invading beyond Gerota's Fascia. That's just too close for comfort in my opinion to not advocate for yearlly scans for at least 4 years. I'll pay for it myself if I have to

    I agree. I don’t think every

    I agree. I don’t think every other year is good enough. I think if radiation is a concern with frequent CT scans then an US every six months should be minimum follow up care for even stage 1. My last US picked up a sub-centimeter cyst on my kidney which we’re now monitoring so it’s not like it’s insensitive to small growths.

  • sblairc
    sblairc Member Posts: 585
    APny said:

    I agree. I don’t think every

    I agree. I don’t think every other year is good enough. I think if radiation is a concern with frequent CT scans then an US every six months should be minimum follow up care for even stage 1. My last US picked up a sub-centimeter cyst on my kidney which we’re now monitoring so it’s not like it’s insensitive to small growths.

    I also ask this question

    I would like to know, specifically, what the risk of secondary cancers is as it correlates to # of CT scans. Maybe that would be a good way to make an objective, individualized decision on the matter rather than just hear "radiation is bad, don't get much". 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    sblairc said:

    I also ask this question

    I would like to know, specifically, what the risk of secondary cancers is as it correlates to # of CT scans. Maybe that would be a good way to make an objective, individualized decision on the matter rather than just hear "radiation is bad, don't get much". 

    Oh Bonnie,, enuff!!
    So sorry

    Oh Bonnie,, enuff!!

    So sorry for all you are going through. I too, hope that John Hopkins can get to the bottom of this and give you the answers you need.

    Sending you a hug filled with HOPE!

    Warmly, Jan

  • foxhd
    foxhd Member Posts: 3,181
    sblairc said:

    I also ask this question

    I would like to know, specifically, what the risk of secondary cancers is as it correlates to # of CT scans. Maybe that would be a good way to make an objective, individualized decision on the matter rather than just hear "radiation is bad, don't get much". 

    frequent scans

    I think that people need to not worry about scan frequency. Bad effects take years to develope. Cancer is going to be much more harmful if it isn't properly identified and treated as soon as possible. Everyone prays for being NED and wants to be treated conservatively. Always more worried about radiation. I think it is a good idea to find mets before there are 20 of them. Treatment options are greater. If things get out of control, the risk of a shortened life is much more serious than the risk of bad teeth and hair loss in 20 years.

    BTW, at this point I can only estimate. They say a CT scan is like having 400 chest x-rays. That is scarey. Since 2011, I have had around 40 Ct scans. And all with contrast. And 1 kidney. 40x400=16 thousand x-rays. When I die, it will be from the cancer. Not from diagnostic studies. I don't care if someone is stage 1. ALWAYS get thorough and frequent scans with contrast. Better safe than sorry.

    But this is only my opinion.

  • brea588
    brea588 Member Posts: 240
    so sorry

    I will be praying for you that all turns out ok and is identified.  Wow , just cant imagine what you are going through waiting thru all this.  In my thoughts.

  • brea588
    brea588 Member Posts: 240
    foxhd said:

    frequent scans

    I think that people need to not worry about scan frequency. Bad effects take years to develope. Cancer is going to be much more harmful if it isn't properly identified and treated as soon as possible. Everyone prays for being NED and wants to be treated conservatively. Always more worried about radiation. I think it is a good idea to find mets before there are 20 of them. Treatment options are greater. If things get out of control, the risk of a shortened life is much more serious than the risk of bad teeth and hair loss in 20 years.

    BTW, at this point I can only estimate. They say a CT scan is like having 400 chest x-rays. That is scarey. Since 2011, I have had around 40 Ct scans. And all with contrast. And 1 kidney. 40x400=16 thousand x-rays. When I die, it will be from the cancer. Not from diagnostic studies. I don't care if someone is stage 1. ALWAYS get thorough and frequent scans with contrast. Better safe than sorry.

    But this is only my opinion.

    Fox

    Lasr year I let them do U/S instead of ct scan because that is all my urologist would do .  THis year my onc said she wanted ct scan and no U/S cause they are not a good test for kidney cancer.  She said if it does pick anything up its too far gone.  So I called my doc office and told them onc wanted ct scan instead of U/S this time and it was 2 weeks later that a resident called my back and said why are you insisting on ct scan?  you get so much radiation from scans.I told him what onc said and he said U/S was good, so I told him if they didnt want to do it that onc would.  So a week later i got my appointments in mail to have ct scan with contrast.  Was supposed to been last week but I got a blood clot in my groin area where hip surgery was done 2 months ago.  Now on all these blood thinners.  Been real down for over a week now. Seems like I fix one thing and 2 more come aboard LOL.   So CT is this thursday May 7th.  Appreciate your thoughts, and some good karma.

  • Bonngo
    Bonngo Member Posts: 79
    Agree

     

    I absolutely agree with all you!  Thanks for your support.  I will let you know what the results are from the "weird" tumor when the results come back from Johns Hopkins.

    <3

    ~Bonnie

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    brea588 said:

    Fox

    Lasr year I let them do U/S instead of ct scan because that is all my urologist would do .  THis year my onc said she wanted ct scan and no U/S cause they are not a good test for kidney cancer.  She said if it does pick anything up its too far gone.  So I called my doc office and told them onc wanted ct scan instead of U/S this time and it was 2 weeks later that a resident called my back and said why are you insisting on ct scan?  you get so much radiation from scans.I told him what onc said and he said U/S was good, so I told him if they didnt want to do it that onc would.  So a week later i got my appointments in mail to have ct scan with contrast.  Was supposed to been last week but I got a blood clot in my groin area where hip surgery was done 2 months ago.  Now on all these blood thinners.  Been real down for over a week now. Seems like I fix one thing and 2 more come aboard LOL.   So CT is this thursday May 7th.  Appreciate your thoughts, and some good karma.

    Aww Brea, I feel for you.

    Aww Brea, I feel for you.

    Glad you could advocate for yourself.

    Remember, WE will walk along side you if you want...

    Let us know how you are doing.

    Sending you a hug filled with love, care and healing energy!!

    Jan

  • Footstomper
    Footstomper Member Posts: 1,237
    brea588 said:

    Fox

    Lasr year I let them do U/S instead of ct scan because that is all my urologist would do .  THis year my onc said she wanted ct scan and no U/S cause they are not a good test for kidney cancer.  She said if it does pick anything up its too far gone.  So I called my doc office and told them onc wanted ct scan instead of U/S this time and it was 2 weeks later that a resident called my back and said why are you insisting on ct scan?  you get so much radiation from scans.I told him what onc said and he said U/S was good, so I told him if they didnt want to do it that onc would.  So a week later i got my appointments in mail to have ct scan with contrast.  Was supposed to been last week but I got a blood clot in my groin area where hip surgery was done 2 months ago.  Now on all these blood thinners.  Been real down for over a week now. Seems like I fix one thing and 2 more come aboard LOL.   So CT is this thursday May 7th.  Appreciate your thoughts, and some good karma.

    There's always someone around to kick you when you're down

    Hang on in there Brea and I hope your scans scan well with the right result. Oh and get a new urologist. Maybe your onc can recommend one?

  • Srashedb
    Srashedb Member Posts: 482
    foxhd said:

    frequent scans

    I think that people need to not worry about scan frequency. Bad effects take years to develope. Cancer is going to be much more harmful if it isn't properly identified and treated as soon as possible. Everyone prays for being NED and wants to be treated conservatively. Always more worried about radiation. I think it is a good idea to find mets before there are 20 of them. Treatment options are greater. If things get out of control, the risk of a shortened life is much more serious than the risk of bad teeth and hair loss in 20 years.

    BTW, at this point I can only estimate. They say a CT scan is like having 400 chest x-rays. That is scarey. Since 2011, I have had around 40 Ct scans. And all with contrast. And 1 kidney. 40x400=16 thousand x-rays. When I die, it will be from the cancer. Not from diagnostic studies. I don't care if someone is stage 1. ALWAYS get thorough and frequent scans with contrast. Better safe than sorry.

    But this is only my opinion.

    Dangers of radiation

    my husband has had mega CTs and lots of cyber knife radiation. The risk of a secondary cancer is definitely high but it takes about 30 years to develop. 

    Balance that with missing a metsstasis from kidney cancer is a no brainer.

    Sarah

  • JoanneNH
    JoanneNH Member Posts: 115
    Bonngo said:

    Agree

     

    I absolutely agree with all you!  Thanks for your support.  I will let you know what the results are from the "weird" tumor when the results come back from Johns Hopkins.

    <3

    ~Bonnie

     

    I had my surgery at

    I had my surgery at Dartmouth-Hitchcock also.