Stage 3 question

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Jojo61
Jojo61 Member Posts: 1,309 Member

I have noticed that most of the people here are stage 1, 2 or 4. I believe that there really aren't that many stage 3's out there - am I right?

Maybe it is my scanxiety (scan coming up on Thursday) but I really am just wondering how many stage 3's out there have remained stage 3?

Also I have noticed that treatments have been offered to some of the (few) stage 3 patients.

I am stage T3a, N0, M0, RCC, with renal sinus invasion, lymphovascular invasion present. No official wording about necrosis, however path report stated that the upper half of kidney replaced by yellow tan mass, and there was a 5 cm bloodclot.   I know that everyone's case is so different (amazing, really) but I would love to hear if I have a twin out there!

Any of your input would be very welcome!

I want to be armed and ready with questions when I see my oncologist for the results next week!

Cheers!

Jojo

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Comments

  • gingersnaps
    gingersnaps Member Posts: 67 Member
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    scans

    Jojo, .  prayers for Ned scans.

  • sblairc
    sblairc Member Posts: 585 Member
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    My husband was T3 NO MX

    Jojo, 

    My husband was similarly Stage 3 Renal sinus fat invasion, extensive necrosis. Chromophobe. 7 cm. He was 47 at diagnosis, almost 18 months NED. 

    Scans coming up in a week. 

    I'm a wreck with the scanxiety and ask myself a lot about Stage 3's that remain NED for long period of time. Our doctor has mentioned several cases he knows of personally. Reading here actually doesn't give me whole lot of positive vibes for Stage 3 staying NED for long term, but I now that it is possible. Nor do I take any comfort in the posts about chromophobe being "indolent" since people here have moved to Stage 4 with this supposed 'indolent' cancer. And extensive necrosis? That's a crapshoot. 

     

    What I do, however, take comfort in, is the idea that anyone is capeable of being a statistical "outlier" in a good way. I'm hoping for that. Someone has to be at the "good end" of the statistical spectrum. Plus my husband tends to be one lucky son of a B%&CH  in general so I really do think he's got some time left. It's tough. . .

  • brea588
    brea588 Member Posts: 240
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    jo jo

    Good luck on your scans thursday will be praying for you.  My scans are next Thursday lol the 23rd.  Hope we both stay NED!!!  I am stage 1 but after genetic testing done im considered high risk of it returning.  Thoughts with you.

  • Dave418
    Dave418 Member Posts: 95 Member
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    I'm also stage 3 with renal

    I'm also stage 3 with renal vein invasion and having the same questions as you. Not a lot of long term stage 3 on this board to give us answers. 

  • foroughsh
    foroughsh Member Posts: 779 Member
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    JoJo, I'm stage 2 and always

    JoJo, I'm stage 2 and always thinking most members are stage 1,3,4 here!!!! Maybe stage 1 ers also think there aren't enough stage 1 either.  People usually join these boards when they are in need and leave when they are calm. Please don't get nervus if there aren't stage 3 here, I've just had a panic attack and know how bad it is. I had all sysmtoms and convinced myself it's come back  but bone scan result was beautiful then those symptoms and stress were gone all of the sudden!!! May you have the same result.

  • Allochka
    Allochka Member Posts: 1,064 Member
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    foroughsh said:

    JoJo, I'm stage 2 and always

    JoJo, I'm stage 2 and always thinking most members are stage 1,3,4 here!!!! Maybe stage 1 ers also think there aren't enough stage 1 either.  People usually join these boards when they are in need and leave when they are calm. Please don't get nervus if there aren't stage 3 here, I've just had a panic attack and know how bad it is. I had all sysmtoms and convinced myself it's come back  but bone scan result was beautiful then those symptoms and stress were gone all of the sudden!!! May you have the same result.

    Just want to say that I'll

    Just want to say that I'll keep fingers crossed for good follow-up scans for you!

  • b1
    b1 Member Posts: 17
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    Allochka said:

    Just want to say that I'll

    Just want to say that I'll keep fingers crossed for good follow-up scans for you!

    stage3

    Hi stage 3b no mo 1 year post op still ned at this stage. I think with stage 3 you have a 50% chance , so its like flipping a coin. You just never know which side you will land on unfortunately. 

  • Timbomba
    Timbomba Member Posts: 48
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    Stage 3

    Hi Jojo,

    Hi was diagnosed Stage 3TN0 almost 6 months ago....recent scans have shown 2 x 5mm nodes on my lungs so I am hoping to stay stge3 .....as they have not confirmed and wont treat until my next scan.... fingers crossed they stay 5mm.

     

    Best of luck on your scans. I have a feeling that you will be fine.

    Tim

  • angelsnls
    angelsnls Member Posts: 67
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    good luck

    Good luck to all of you having scans soon.

    Love angela xx

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

    good luck

    Good luck to all of you having scans soon.

    Love angela xx

    Yes, echoing Angela. Keeping

    Yes, echoing Angela. Keeping my fingers crossed for all you having scans and may they all come back NED.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
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    APny said:

    Yes, echoing Angela. Keeping

    Yes, echoing Angela. Keeping my fingers crossed for all you having scans and may they all come back NED.

    Thanks for everyone's

    Thanks for everyone's comments and good wishes for those of us with upcoming scans.

    I see we haven't had very many stage 3's chime in out there.

    Sblairc - you vocalized my thoughts so well....I am feeling that the stage 3 is a holding place. Having read your summary, your husband and I are quite similar other than the chromophobe. But now that you know about my details do you think that my tumour involved necrosis? I can ask the oncologist next week, but just curious.

    I must say I am feeling discouraged right now....I know Djinnie's present condition doesn't help matters.

    Hugs

    Jojo

     

     

  • sblairc
    sblairc Member Posts: 585 Member
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    Jojo61 said:

    Thanks for everyone's

    Thanks for everyone's comments and good wishes for those of us with upcoming scans.

    I see we haven't had very many stage 3's chime in out there.

    Sblairc - you vocalized my thoughts so well....I am feeling that the stage 3 is a holding place. Having read your summary, your husband and I are quite similar other than the chromophobe. But now that you know about my details do you think that my tumour involved necrosis? I can ask the oncologist next week, but just curious.

    I must say I am feeling discouraged right now....I know Djinnie's present condition doesn't help matters.

    Hugs

    Jojo

     

     

    I think necrosis is always mentioned if present

    I am pretty sure if you read the report and it didn't say it, then it probably didn't have it. I still can't get a clear understanding about the relevance of it anyways even after reading as many journal articles as I could find. I decided to stop totally fixating on it and just staying positive that we are going to beat this thing, get NED scans, at least for a while. 

    It's weird, I just expect good scans now. I think those were Fox's words actually. Expect good scans. 

    The stress of the unknown is very very difficult. It's been 18 months and I still go to therapy once a month. The abruptness of how my husband was diagnosed and the circumstances around it (which my 8 year old daughter was a part of) had the effect of post traumatic stress disorder. After Ron passed, I was very strongly considering "dropping off" from here. I wasn't sure I could handle it anymore. But that would be letting kidney cancer take away the good feeling I get from trying to help here. So dispite it all, here I am. In the holding pattern of my husband's Stage 3 scans trying to live in the moment as best as I can 

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

    I think necrosis is always mentioned if present

    I am pretty sure if you read the report and it didn't say it, then it probably didn't have it. I still can't get a clear understanding about the relevance of it anyways even after reading as many journal articles as I could find. I decided to stop totally fixating on it and just staying positive that we are going to beat this thing, get NED scans, at least for a while. 

    It's weird, I just expect good scans now. I think those were Fox's words actually. Expect good scans. 

    The stress of the unknown is very very difficult. It's been 18 months and I still go to therapy once a month. The abruptness of how my husband was diagnosed and the circumstances around it (which my 8 year old daughter was a part of) had the effect of post traumatic stress disorder. After Ron passed, I was very strongly considering "dropping off" from here. I wasn't sure I could handle it anymore. But that would be letting kidney cancer take away the good feeling I get from trying to help here. So dispite it all, here I am. In the holding pattern of my husband's Stage 3 scans trying to live in the moment as best as I can 

    Sorry for your scanxiety

    Sorry for your scanxiety JoJo! Yes, didn't think of it, but if you are 50-50 of course you'd be concerned.

    My brother in law had total necrotic kidney I believe and he's still NED 17 years later!

    So again, I would say the Serenity prayer.. do you know it? The reason is to get your mind off your fears, relax and seize the moments we have control over..

    Hope others will chime in to let you know how you are doing. I would keep posting hoping they SEE your post and respond.

    Gentle hugs, my friend,

    Jan

  • Ree_Maryland
    Ree_Maryland Member Posts: 161 Member
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    scans

    I JUST HAD MY SCANS DONE APRIL 3RD SO FAR CLEAR. HOPE EVERYONE HEARS GOOD VIBES ON THEIR UP COMING SCANS,  . THINKING OF YOU ALL ,HOPE ALL GOES WELL .

     

  • Phredswife
    Phredswife Member Posts: 162
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    Jojo61 said:

    Thanks for everyone's

    Thanks for everyone's comments and good wishes for those of us with upcoming scans.

    I see we haven't had very many stage 3's chime in out there.

    Sblairc - you vocalized my thoughts so well....I am feeling that the stage 3 is a holding place. Having read your summary, your husband and I are quite similar other than the chromophobe. But now that you know about my details do you think that my tumour involved necrosis? I can ask the oncologist next week, but just curious.

    I must say I am feeling discouraged right now....I know Djinnie's present condition doesn't help matters.

    Hugs

    Jojo

     

     

    Sending you a hug Jojo

    Jojo . I am sorry you are feeling discouraged. It is hard not to worry I know . I struggle everyday with worrying about Greg's cancer returning and his had terrible histology and I really don't know what stage he is. We were told T4 but it was also grade 4. Hopefully your 'Arnold' tumour just like hubby's 'Evil starfish" never ever make a reappearence but if it does we will all be here for you. Hugs Melissa xox

    ps Dj has been blessed to have such a caring friend as you.

  • Allochka
    Allochka Member Posts: 1,064 Member
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    scans

    I JUST HAD MY SCANS DONE APRIL 3RD SO FAR CLEAR. HOPE EVERYONE HEARS GOOD VIBES ON THEIR UP COMING SCANS,  . THINKING OF YOU ALL ,HOPE ALL GOES WELL .

     

    Jojo,
    let's try to remain

    Jojo,

    let's try to remain positive. Djinnie's  health has a deep effect on everybody's positivity, but the fact is that if it happenned to her - doesn't mean it will happen to you or someone else here...

    I myself feel my health anxiety returning. I was so brave, positive and relatively calm during my fiance's treatment. I guess I was in fighting mode. Now, when things seem to be over, I get some kind of post-traumatic stress disorder too. I re-read his scan reports, find other minor health issues mentioned there, not related to cancer and obviously not dangerous. I blow them out of proportions and start thinking it may be another cancer not yet diagnosed, or become cancer in the future...

    now I understand how crippling morally cancer is, both for patients and caregivers. This is also the thing we should fight against - letting cancer steal our lives, not physically, but metaphorically.

    I will expect good scans for you, as Fox suggested. and they wilL come !

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
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    Allochka said:

    Jojo,
    let's try to remain

    Jojo,

    let's try to remain positive. Djinnie's  health has a deep effect on everybody's positivity, but the fact is that if it happenned to her - doesn't mean it will happen to you or someone else here...

    I myself feel my health anxiety returning. I was so brave, positive and relatively calm during my fiance's treatment. I guess I was in fighting mode. Now, when things seem to be over, I get some kind of post-traumatic stress disorder too. I re-read his scan reports, find other minor health issues mentioned there, not related to cancer and obviously not dangerous. I blow them out of proportions and start thinking it may be another cancer not yet diagnosed, or become cancer in the future...

    now I understand how crippling morally cancer is, both for patients and caregivers. This is also the thing we should fight against - letting cancer steal our lives, not physically, but metaphorically.

    I will expect good scans for you, as Fox suggested. and they wilL come !

    Everybody is so sweet. The

    Everybody is so sweet. The support here is tremendous.

    Yes, I will think positive thoughts....for sure! Just once in a while, that positive bit gets overshadowed by fear and doubt.

    Thanks all! Today's the day! News next week.

    Hugs

    Jojo

  • sblairc
    sblairc Member Posts: 585 Member
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    Thinking NED!

    It WILL be NED. It just WILL!!!

  • growler9
    growler9 Member Posts: 48
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    Jojo61 said:

    Everybody is so sweet. The

    Everybody is so sweet. The support here is tremendous.

    Yes, I will think positive thoughts....for sure! Just once in a while, that positive bit gets overshadowed by fear and doubt.

    Thanks all! Today's the day! News next week.

    Hugs

    Jojo

    Hope this doesn't jinx me!

    Jojo - Hope this makes you feel a little more positive. I had an open partial on left kidney, S3/G3 with renal vein invasion, on 6-20-11 and an open partial on right kidney, S1/G2, on 8-8-11.

    So far, so good.

    Best wishes to you.  Alan

  • Srashedb
    Srashedb Member Posts: 482 Member
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    Scans

    JoJo:

    sending good thoughts to you on your scans; interestingly, my husband's pathology was also T3(a) because the lab was unaware of his spinal mets that had already been treated.

    I sure wish there were ways to get through these tests without stress.

    Let us know 

    Sarah