PT3, NX Pathology Report - anyone else out there with PT3 - how are you doing?

Devastated Wife
Devastated Wife Member Posts: 52 Member

Hi everyone:

 

I have been reading over the message boards for quite some time now but have never participated.  I find everyone's comments to be very helpful.  Sometimes I leave the messages boards (or the entire Internet) feeling a little optimistic and then other times (most times) I have to close the lap top lid and walk away because the information is overwhelming and mentally draining/depressing (to say the least...mentally and physically draining is a major feeling through this whole time).  Overall, I find the site helpful though and the best.  So, thank you.

 

I could write a book here about our journey but I'll try to keep it short.

 

On February 14, 2018, my husband had his left kidney, ureter (and now I found out from the pathology report also his adrenal gland) removed.  I think it is good that he had his adrenal gland also removed because I think the more removed, the better.  I am surprised though because I could have sworn we asked his urologist if he also removed his adrenal gland and he said no, he didn't....but the pathology report says yes, it was removed.  I hope the pathology report is correct.

Going into the surgery, we all thought it was Stage 1 and low grade (they did a biopsy of it through a ureteroscopy procedure in January and the pathology report came back as Stage 1 and low grade) but after the kidney was removed and they did the biopsy, they said it was Stage 3 and high grade.  My husband was told it was Stage 3 and high grade a couple days after the surgery and while he was still recovering in his hospital bed.   His urologist said he would also like him to also receive chemotherapy to "kill any specks of cancer" that might still be in him.  We did meet with the oncologist on April 3 and found out the treatment would be very harsh (to say the least) and long and had a lot of bad side effects.  Also, the chemotherapy didn't seem to make much of a difference to prevent any cancer from returning.  Whether he had the chemo or didn't have the chemo...the odds were pretty similar.  The oncologist read us the statistics.   I felt like a punch in the gut when the oncologist read one statistic off his laptop that there was a 50/50 chance of survival after 2 years????  I hope that is wrong.

 

The good news is that my husband recovered very well from this surgery.  In fact today (April 13) he is out playing golf now.  I would say 4 weeks after the surgery my husband was feeling really good.  He says he has no pain.  I am really surprised about all of this because I heard bad stories of this recovery being extremely painful and a long recovery time.  So, I am thankful he had such a good recovery.

 

My husband is feeling really good now health wise and says he really needs a break from doctors right now.

 

The doctors said it is PT3 because it may have gotten into veins?  

 

My husband's urologist/surgeon also said he is "99% sure he got all the cancer".   I hope he is right!  I just have the constant worry/anxiety/nervousness/fear that he still has some cancer in him.

 

I am attaching my husband's pathology report below.  Anyone else here diagnosed with PT3 and did **not** have chemotherapy?  How are you doing?

 

Anything you can tell me good or bad about this report.  Thank you.

 

Pathology Report

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Comments

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    I really should change my screen name to something more optimist

    I really should change my screen name to something more optimistic or uplifting and later I might add a picture.  

    I will do that later.

  • icemantoo
    icemantoo Member Posts: 3,359 Member

    I really should change my screen name to something more optimist

    I really should change my screen name to something more optimistic or uplifting and later I might add a picture.  

    I will do that later.

    Get a second opinion

    DW,

     

    Your choicese appear to be conflicted. I would seek another opinion.  Ask a lot of questions. Sending good karma.

     

     

     

    icemantoo

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    icemantoo said:

    Get a second opinion

    DW,

     

    Your choicese appear to be conflicted. I would seek another opinion.  Ask a lot of questions. Sending good karma.

     

     

     

    icemantoo

    Thank you. 

    Thank you.   My husband is so sick of the cancer and doctors that he doesn't even want it to be talked about anymore and just wants to enjoy the summer.  His problems seemed to start in July (blood in urine...and a lot of it) and he was finally correctly diagnosed in December.   I know he will need to have scans every 3 months to check for any new cancers popping up.  His urologist said he will also have to have another utereroscopy every now and then to check for bladder cancer.  My husband said that utereroscopy procedure was so painful and he was actually in pain for 3 days after it and trying to urinate during that time brought on a lot of pain.  He really doesn't want to do it again (have the utereroscopy).  He actually said the utereroscopy was worse than the kidney surgery.

    I have suggested to my husband that we get another opinion from another oncologist but he doesn't want to do it...or at least not now.   

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Not a fun procedure for us guys

    DW,

     

    Been there, done that, no fond memories of it. I had it in the begining, not since. Hopefully once is enough.

     

     

    icemantoo

  • JoeyZ
    JoeyZ Member Posts: 210
    I have quite a bit of

    I have quite a bit of similarity with your husband. But I am glad to see his did not spread to the IVC nor into the renal vein into the cardiac system. That's great news. Mine did spread that far.

    My tumor was 10 cm and it was quite a bleeder. Took 10 hours and I lost all my own blood and had transfusions. Did ok and am glad to be alive now. Recovering slowly but ok. Had surgery 3/8. 

    Anyway, my classifications are pRCC Type 2, (the most aggressive) and Grade 3c.

    I know you asked how people were doing without treatment, but just to chime in, I just started week 2 on Cabometyx. Docs are not really sure they got all the cancer. I had a CT scan last Tuesday and will get it interpreted for me this next Tue. when I see the Oncologist.

    I understand the feeling of needing a break from doctors and all of it. I don't have that option just yet. I wanted to be proactive and have the treatment just in case they didn't get it all. Plus get a couple scans out of the way and see if any comes back. As fast acting as this is, I just didn't want to risk it. Cabo seems to have a good track record.

    I don't know if any of this helps or not, but I sure do wish you both all the best. You do have a little time to think about what to do next, so you don't have to panic. 

    So far my treatment is not too harsh. I know more side effects are coming, but into week 2 and doing ok with some stomach issues, a little nausea and sometimes a little pain. I tire more easily. But so far it's very doable. We'll see what happens in a few more weeks.

  • randyradiohill
    randyradiohill Member Posts: 67 Member
    I know how your husband feels...

    Been there, done that, got the t-shirt.  I too was diagnosed with stage 3.  My tumor was smaller though, and like your husbands, all the doctors thought it would be stage 1.  When they went in, they discovered it had broken containment and the path report showed a T3a, grade 2.  I had my first scan last week and everything is clear.  I had an honest conversation with my surgeon and he told me he was very optimistic, but  from his experience year 2 and year 5 were the most worrisome.  That is when he sees the most reoccurance.

    It's been pretty mentally tough, and like your husband, I am sick of the whole thing and too am just wanting to enjoy the summer and quit being punched every time I turn around.  Here's sending positive thoughts your way and hoping you guys can enjoy some peace.

  • kidneystoneblessing
    kidneystoneblessing Member Posts: 25

    I know how your husband feels...

    Been there, done that, got the t-shirt.  I too was diagnosed with stage 3.  My tumor was smaller though, and like your husbands, all the doctors thought it would be stage 1.  When they went in, they discovered it had broken containment and the path report showed a T3a, grade 2.  I had my first scan last week and everything is clear.  I had an honest conversation with my surgeon and he told me he was very optimistic, but  from his experience year 2 and year 5 were the most worrisome.  That is when he sees the most reoccurance.

    It's been pretty mentally tough, and like your husband, I am sick of the whole thing and too am just wanting to enjoy the summer and quit being punched every time I turn around.  Here's sending positive thoughts your way and hoping you guys can enjoy some peace.

    Me too

    Stage 3a 4 cm Tumor.  Was diagnosed stage 1 prior to surgery.   Upstaged due to kidney fat focal invasion.  So far doing good and NED since July 2017

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    JoeyZ said:

    I have quite a bit of

    I have quite a bit of similarity with your husband. But I am glad to see his did not spread to the IVC nor into the renal vein into the cardiac system. That's great news. Mine did spread that far.

    My tumor was 10 cm and it was quite a bleeder. Took 10 hours and I lost all my own blood and had transfusions. Did ok and am glad to be alive now. Recovering slowly but ok. Had surgery 3/8. 

    Anyway, my classifications are pRCC Type 2, (the most aggressive) and Grade 3c.

    I know you asked how people were doing without treatment, but just to chime in, I just started week 2 on Cabometyx. Docs are not really sure they got all the cancer. I had a CT scan last Tuesday and will get it interpreted for me this next Tue. when I see the Oncologist.

    I understand the feeling of needing a break from doctors and all of it. I don't have that option just yet. I wanted to be proactive and have the treatment just in case they didn't get it all. Plus get a couple scans out of the way and see if any comes back. As fast acting as this is, I just didn't want to risk it. Cabo seems to have a good track record.

    I don't know if any of this helps or not, but I sure do wish you both all the best. You do have a little time to think about what to do next, so you don't have to panic. 

    So far my treatment is not too harsh. I know more side effects are coming, but into week 2 and doing ok with some stomach issues, a little nausea and sometimes a little pain. I tire more easily. But so far it's very doable. We'll see what happens in a few more weeks.

    Thanks, JoeyZ!

    Hi JoeyZ,

    You said:  "I don't know if any of this helps or not"

    Just wanted to say that yes, it really does help and thank you!

    I read what you wrote probably 3 times...at least.  If my husband listens to me about getting a 2nd oncologist opinion, I will also inquire about Cabometyx.  I see a lot of people on this message board that are on that.

    I don't want to bring it up now to him because he is adamant that we don't speak about the cancer until maybe June or July.  He was seriously (no exaggeration) getting mentally and physically sick about it because it was on his mind all the time.  It's on my mind all the time, too.  He's feeling much better now that he has his mind on other things.

    The first (and only) oncologist we spoke to wanted to put my husband on Gemzar and Cisplatin.

    This was an adjuvant treatment plan.

    Day 1:  The first day of chemo treatment would be 7 1/2 hours straight of Gemzar and Cisplatin fed into him through a chemo port.

    Day 8: one hour of Gemzar given to him through a chemo port

    Day 15: they would do lab work on him

    They wanted to do Day 1, Day 8 and Day 15 a total of four times.

    The side effects were harsh and we were also worried about his only kidney.  He also has diabetes but I don't know if that would make things worse.  We also don't even know if he has cancer in him right now and so it would be all that harm on his body for nothing.  Also, the oncologist said that if we DO the chemo, there is still a 34% chance he will still get cancer and if we DO NOT do the chemo there was a 44% chance he would get cancer.  So, the odds were pretty close whether we did it or not.

    It's very confusing and a lot of information.  I would like him to go to a different oncologist facility to get a 2nd opinion and maybe there is a treatment plan he could go on that would not be so harsh.  Again, what if he doesn't even have cancer and we put all these harmful drugs in him.  Just wish I had a magic ball to tell me what his cancer situation is.  We will just have to get him screened for cancer every 3 months or so and find out.


    I am happy that you said you are recovering slowly and are OK.  I am also happy to hear that your treatment plan is not too harsh.

    I absolutely wish you the best and feel like we are all in this together.

    I'll be checking back every now and then to find out about your progress.

     

    Thanks for the comment on my post and your help!

     

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member

    I know how your husband feels...

    Been there, done that, got the t-shirt.  I too was diagnosed with stage 3.  My tumor was smaller though, and like your husbands, all the doctors thought it would be stage 1.  When they went in, they discovered it had broken containment and the path report showed a T3a, grade 2.  I had my first scan last week and everything is clear.  I had an honest conversation with my surgeon and he told me he was very optimistic, but  from his experience year 2 and year 5 were the most worrisome.  That is when he sees the most reoccurance.

    It's been pretty mentally tough, and like your husband, I am sick of the whole thing and too am just wanting to enjoy the summer and quit being punched every time I turn around.  Here's sending positive thoughts your way and hoping you guys can enjoy some peace.

    Thanks, RandyRadioHill!

    Hi Randyradiohill:

     

    I seriously read everyone's reply (like yours) at least 3 times.  It's just filled with a lot of information that I want to know.
    I am happy to hear that your scan was clear and your surgeon is optimistic.  That's great news!
    Yes, years 2 and 5 are scary.  Ugh.  It's a worry.

    Thanks for the kind comments and I'm sending positive thoughts your way and hoping you can enjoy some peace, too.

    I'll be watching your progress since you are in the T3 club.

    I see you are "Grade 2" but my husband's pathology report didn't give it a grade number but just said "High Grade".  Not something we want to see.

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member

    Me too

    Stage 3a 4 cm Tumor.  Was diagnosed stage 1 prior to surgery.   Upstaged due to kidney fat focal invasion.  So far doing good and NED since July 2017

    Hi Kidneystoneblessing:

    Hi Kidneystoneblessing:

     

    That's good news you are NED since July 2017.  When you had your kidney taken out did they also take out the kidney fat?

  • Dutch1
    Dutch1 Member Posts: 152
    I don't have the technical

    I don't have the technical knowledge as to your specific situation as to your husband's kidney cancer.  I do know that advances in treatment have resulted in better results than 10 or 15 years ago.  For me, it's been that way.  I am at stage 4 and my surgeon's prognosis was that I'd have 3 years to live.  He told me that over 5 years ago and I am doing well right now.  My cancer came back twice and was dealt with twice.  So, it's a pain to go through the doctor visits and the treatment, but there are plenty of success stories.  

     

    Taking a vacation from the doctoring isn't a great idea, in my mind.  Giving cancer a free go at it can't bring positive results.  

     

    Your relationship with your primary cancer care doctor is so very important.  If you aren't comfortable with the support (medically and attitude) you get fromo him/her, it's time to look elsewhere.  I have been so fortunate because we found a great oncologist in our immediate area.  He's a small-city guy, but is a wonderful fit for my wife and I.  In conjunction with our local doc, we have consulted with a large teaching hospital in a larger nearby city.  We have used the teaching hospital for my surgery and for second opinions at important junctures in my treatment.  Don't be afraid to seek second opinions.  A good doctor shouldn't resist your desire to get another doctor's input.  Cancer treatment is not entirely a science.  There is some art to the healing process.

     

    I wish you the best.

     

    Dutch.

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    Dutch1 said:

    I don't have the technical

    I don't have the technical knowledge as to your specific situation as to your husband's kidney cancer.  I do know that advances in treatment have resulted in better results than 10 or 15 years ago.  For me, it's been that way.  I am at stage 4 and my surgeon's prognosis was that I'd have 3 years to live.  He told me that over 5 years ago and I am doing well right now.  My cancer came back twice and was dealt with twice.  So, it's a pain to go through the doctor visits and the treatment, but there are plenty of success stories.  

     

    Taking a vacation from the doctoring isn't a great idea, in my mind.  Giving cancer a free go at it can't bring positive results.  

     

    Your relationship with your primary cancer care doctor is so very important.  If you aren't comfortable with the support (medically and attitude) you get fromo him/her, it's time to look elsewhere.  I have been so fortunate because we found a great oncologist in our immediate area.  He's a small-city guy, but is a wonderful fit for my wife and I.  In conjunction with our local doc, we have consulted with a large teaching hospital in a larger nearby city.  We have used the teaching hospital for my surgery and for second opinions at important junctures in my treatment.  Don't be afraid to seek second opinions.  A good doctor shouldn't resist your desire to get another doctor's input.  Cancer treatment is not entirely a science.  There is some art to the healing process.

     

    I wish you the best.

     

    Dutch.

    Thanks, Dutch.

    "Taking a vacation from the doctoring isn't a great idea, in my mind.  Giving cancer a free go at it can't bring positive results."

    I agree.  I want to seek second opinions.  My husband isn't on board yet.  He has already told me more than once he is ready to die and isn't afraid of dying.  Well, I'm not!  I don't want him to die and I want him to live a long, healthy life.  

  • Hi Kidneystoneblessing:

    Hi Kidneystoneblessing:

     

    That's good news you are NED since July 2017.  When you had your kidney taken out did they also take out the kidney fat?

    Yes they did

    That’s how they saw the focal fat via microscope And pathology analysis. 

  • Yes they did

    That’s how they saw the focal fat via microscope And pathology analysis. 

    Also had a partial kidney removal.

    I still have 90% of my kidney and all of my right one too  

  • sblairc
    sblairc Member Posts: 585

    Hello again, I apologize if I missed a post here, but since many of our friends here were sharing experinces about kidney cancer, I wanted to clarify and ask if you had looked up "invasive papillary urothelial" and knew it was bladder cancer? I believe that was what i read. I just know it can be overwhelming, but if it is indeed bladder cancer the info from your kidney cancer friends here may not be applicable since they are different types of cancer (even though it was in the kidney). My husband had kidney cancer in 2013 and more recently agressive fibroma/desmoid tumor of the small intestine which we were told was cancer but then told it was not. I understand the roller coaster, and just want to help as best as I can. 

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    sblairc said:

    Hello again, I apologize if I missed a post here, but since many of our friends here were sharing experinces about kidney cancer, I wanted to clarify and ask if you had looked up "invasive papillary urothelial" and knew it was bladder cancer? I believe that was what i read. I just know it can be overwhelming, but if it is indeed bladder cancer the info from your kidney cancer friends here may not be applicable since they are different types of cancer (even though it was in the kidney). My husband had kidney cancer in 2013 and more recently agressive fibroma/desmoid tumor of the small intestine which we were told was cancer but then told it was not. I understand the roller coaster, and just want to help as best as I can. 

    Thanks sblairc

    I did notice that in my Google search.  Very confusing since the tumor was in his kidney.  His bladder will have to be monitored.  The urologist/his surgeon did check the inside of his bladder in January when he had his utereroscopy (before his kidney was removed in February) and said his bladder looked OK.

    This is frustrating.

    I noticed in your profile that your husband's Pathology is T3a.  Did he ever receive chemotherapy or just surgery?

  • Dutch1
    Dutch1 Member Posts: 152
    edited April 2018 #18

    Thanks, Dutch.

    "Taking a vacation from the doctoring isn't a great idea, in my mind.  Giving cancer a free go at it can't bring positive results."

    I agree.  I want to seek second opinions.  My husband isn't on board yet.  He has already told me more than once he is ready to die and isn't afraid of dying.  Well, I'm not!  I don't want him to die and I want him to live a long, healthy life.  

    I am sorry that your husband

    I am sorry that your husband isn't ready to pursue treatment for the cancer yet.  All of us on this forum have had more than our share of dark days.  It comes with the territory.  The thing is, you can't do anything about this disease if he is unwilling.  I pray that he will pull out of his funk -- either on his own, through your efforts or through the efforts of friends, family or a professional.

    Hang in there.

    Dutch 

  • AnnissaP
    AnnissaP Member Posts: 632
    edited April 2018 #19
    Good morning! So glad to hear

    Good morning! So glad to hear they took the kidney and cancer out! It is tough, but enjoy life. There will always be so many questions, but why allow that to stop you from living?! Thinking about it all the time won't change anything or make things better or worse. I know, I know...Easier said than done. I am happy to hear your husband is out golfing. Wonderful!!! See...enjoying life!!!! Please don't let this cancer thing control your life or mind. We have all been there or are there right now and we all have one thing in common.....LIFE!!! We all have life right now so.....live it. Stay up. Stay strong. Stay laughing and enjoying every minute you have here xoxo.

  • sblairc
    sblairc Member Posts: 585

    Thanks sblairc

    I did notice that in my Google search.  Very confusing since the tumor was in his kidney.  His bladder will have to be monitored.  The urologist/his surgeon did check the inside of his bladder in January when he had his utereroscopy (before his kidney was removed in February) and said his bladder looked OK.

    This is frustrating.

    I noticed in your profile that your husband's Pathology is T3a.  Did he ever receive chemotherapy or just surgery?

    Chromophobe: only surgery T3

    So far only surgery but now that he had another UNRELATED tumor he will get MRI's for that every 6 months. He's moved to yearly scans now. 

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    AnnissaP said:

    Good morning! So glad to hear

    Good morning! So glad to hear they took the kidney and cancer out! It is tough, but enjoy life. There will always be so many questions, but why allow that to stop you from living?! Thinking about it all the time won't change anything or make things better or worse. I know, I know...Easier said than done. I am happy to hear your husband is out golfing. Wonderful!!! See...enjoying life!!!! Please don't let this cancer thing control your life or mind. We have all been there or are there right now and we all have one thing in common.....LIFE!!! We all have life right now so.....live it. Stay up. Stay strong. Stay laughing and enjoying every minute you have here xoxo.

    Thank you, AnnissaP!

    Smile