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

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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's picture
icemantoo
Posts: 3180
Joined: Jan 2010

DW,

 

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

 

 

 

icemantoo

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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's picture
icemantoo
Posts: 3180
Joined: Jan 2010

DW,

 

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

 

 

icemantoo

JoeyZ's picture
JoeyZ
Posts: 191
Joined: Mar 2018

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.

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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!

 

randyradiohill's picture
randyradiohill
Posts: 63
Joined: Aug 2017

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
Posts: 25
Joined: Aug 2017

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's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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?

kidneystoneblessing
Posts: 25
Joined: Aug 2017

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

kidneystoneblessing
Posts: 25
Joined: Aug 2017

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

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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.

Dutch1's picture
Dutch1
Posts: 146
Joined: Mar 2014

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's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

"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.  

Dutch1's picture
Dutch1
Posts: 146
Joined: Mar 2014

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 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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?

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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. 

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

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.

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Smile

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

You've had a lot to take in lately.  Sorry but here is a bit more.

Chemo is not always presribed after kidney cancer surgery because kidney cancer usually does not respond well to traditional Chemo - the survival stats you have quoted are a good sign of that.  Not sure if the same applies to bladder cancer.

The surgeon/urologst and pathologist can only look at what they've taken out and "guess" that they have got the lot.  They cannot tell if it has metastasised, which means spread to other more remote locations inthe body.  That spread occurs through the blood so I gues that is he meant when he said he did not know if it had gotten into the veins.  The same applies for almost all other types of cancer, and adjuvant treatment is intended to mop-up any such bits that might have spread before or during surgery.

A more recent type of treatment for some cancers including kidney is immunotherapy.  This is a lot less aggressive than standard chemo.  There has been some success with immunotherapy as a treatment for established metastatic renal cell carcinoma (mRCC) including myself (more details on my profile).  So if itdoes show up later in follow-up scans (up to 5 years later is not unheard of) that might be an option for your husband.

They are now lookng at giving immunotherapy as an adjuvant treatment, but this is probably still in trial stage.  Participation in a clinical trial could be an option for your husband if he is prepared to engage with the reality of his condition, but that would depend on finding a trial wherever you are and then getting accepted.

You still have a long way to go but it's not all bad news and the science behind cancer survival is getting better every day.

Keep up with the learning cycle and maintain a good attitude. And perhaps you really should change that stage name.

Best wishes for both of you. 

 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

Thanks Manufred.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

my initial prognosis did not allow for me to play any golf. I only asked that I could play just one more summer. That was 7 years ago.

Did I mention motorcycles?

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

He made sure to ask if it was OK to play golf and his urologist/surgeon gave him the OK.  He's actually out there again playing golf (April 17).  I'm very thankful he has no pain after the kidney removal surgery.  He's doing really well.  Fingers crossed.  Just please, please, please, I hope all that cancer got removed during the surgery.

Surgery was on February 14, 2018.

Foxhd, I am very happy to hear your prognosis was 7 years ago and you seem to be doing very well now.

What was your staging?  My husband's is/was PT3.

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

He didn't have bladder cancer.  He had kidney cancer.

The cancer he had is just not as common in the kidneys.  It's rare.

It's called urothelial carcinoma or transitional cell carcinoma.

It's a type of cancer that typically occurs in the urinary system. It is the most common type of bladder cancer and cancer of the ureterurethra, and urachus. It is the second most common type of kidney cancer, but accounts for only five to 10 percent of all primary renal malignant tumors.

urothelial cancer :  

Cancer that begins in cells called urothelial cells that line the urethra, bladder, ureters, renal pelvis, and some other organs. Urothelial cells are also called transitional cells. These cells can change shape and stretch without breaking apart. Also called transitional cell cancer.



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