Confused about the staging & stress for the path results tomorrow.....

Dembel

Hi there,

As I told before, my partner had a radical nefrectomy (left) one month ago. One lymph node was clearly swollen on the scan, and also the blood vessels surrounding the kidney marked positive on the contrast. They removed the kidney, the adrenal gland, and the lymph nodes and blood vessels. They called that a stage III, but reading on this forum, that is already stage IV?
Anyway, what's in a name right...?

Now swollen testicle, ultrasound was taken, and tomorro the first big day since the operation, going to the hospital to (hopefully) hear all results from liver scan, pathology of the tumor, grade, stage etc.....

Not sure I'll sleep well tonight! He will sleep well, the urologist said they go for total cure, so he's convinced everything is now OUT. Finished. End of story. I feel such a party pooper sitting on this forum as I seem the only one to be stressed.

Greets

Demi

Allochka

I think it is natural to

I think it is natural to worry more about loved ones than about ourselves. I totally understand, it is my partner who had cancer but it is me who does all the worrying..

wish you some positive results tomorrow, please keep us posted! Hugs!

Jojo61

Allochka said:

I think it is natural to

I think it is natural to worry more about loved ones than about ourselves. I totally understand, it is my partner who had cancer but it is me who does all the worrying..

wish you some positive results tomorrow, please keep us posted! Hugs!

You are not a party pooper,

You are not a party pooper, but one of our beloved caregivers! We wouldn't be able to thrive so well without you in our lives. Hoping you get great results tomorrow.

Hugs

Jojo

Dembel

Jojo61 said:

You are not a party pooper,

You are not a party pooper, but one of our beloved caregivers! We wouldn't be able to thrive so well without you in our lives. Hoping you get great results tomorrow.

Hugs

Jojo

We have the result.....lots of info, some good news also, the swollen lymph node turned out to be a ganglioneuroma, nothing to do with the cancer.

 

The result is as follows:

- invasive renal cell carcinoma, clear cell, 7,5cm diameter

- Furhman grade (nuclear grade) 2

- invasion of hilar, perpelvic fat tissue

- vascular invasion of segmentary branches of the vena renalis

- adrenal gland free of tumor

- pyelum and urether free of tumor

- one hilar lymphnode free of tumor

- gland kidney hilus free of tumor

- and then the ganglioneuroma on one side

 

TNM (7th edition UICC): pT3a pN0 (0/2 hilar lymphnodes) pMX

 

I think we feel happy, relieved, although not easy to get your head around all these codes and numbers.

 

Plan is contract scan 4 months after operation, since he will still be seen as a high-risk patient.

 

Anybody any thought on this result?

thanks

Demi

Phredswife

Dembel said:

We have the result.....lots of info, some good news also, the swollen lymph node turned out to be a ganglioneuroma, nothing to do with the cancer.

 

The result is as follows:

- invasive renal cell carcinoma, clear cell, 7,5cm diameter

- Furhman grade (nuclear grade) 2

- invasion of hilar, perpelvic fat tissue

- vascular invasion of segmentary branches of the vena renalis

- adrenal gland free of tumor

- pyelum and urether free of tumor

- one hilar lymphnode free of tumor

- gland kidney hilus free of tumor

- and then the ganglioneuroma on one side

 

TNM (7th edition UICC): pT3a pN0 (0/2 hilar lymphnodes) pMX

 

I think we feel happy, relieved, although not easy to get your head around all these codes and numbers.

 

Plan is contract scan 4 months after operation, since he will still be seen as a high-risk patient.

 

Anybody any thought on this result?

thanks

Demi

Yay

That sounds like a better result than you were expecting. I am a caregiver for my husband that was stage 4 I think. T4 grade 4. I seem to remember my hubby having to see the urologist about the same swelling you mention. Grade 2 is way better than grade 4 and 18months on from his radical nephrectomy Greg is still Ned so far. New scan coming up soon I think.

 Wishing you well with everything. Some people are better at hiding the stress they feel than others. I still get worried about my husband  to be honest. Take care.

Hugs Melissa xox

Dembel

Phredswife said:

Yay

That sounds like a better result than you were expecting. I am a caregiver for my husband that was stage 4 I think. T4 grade 4. I seem to remember my hubby having to see the urologist about the same swelling you mention. Grade 2 is way better than grade 4 and 18months on from his radical nephrectomy Greg is still Ned so far. New scan coming up soon I think.

 Wishing you well with everything. Some people are better at hiding the stress they feel than others. I still get worried about my husband  to be honest. Take care.

Hugs Melissa xox

everybody reacts differently.....

that's for sure! Husband ready to open champagne today, the urologist repeated 3 times that he is still a high risk patient (because he was already talking about champagne in the doctor's office!), and I'm trying to keep a balance between realistic and optimistic, but failing many times bending over to the pessimist side.

But 18 months with grade 4 gives hope! Good luck to you as well Phredswife!

donna_lee

Dembel said:

everybody reacts differently.....

that's for sure! Husband ready to open champagne today, the urologist repeated 3 times that he is still a high risk patient (because he was already talking about champagne in the doctor's office!), and I'm trying to keep a balance between realistic and optimistic, but failing many times bending over to the pessimist side.

But 18 months with grade 4 gives hope! Good luck to you as well Phredswife!

Who knows....?

How long you live with Stage III or IV....until something makes you see a Dr. for, most likely, a suspected pulled muscle, bladder infection, gall stone, bruised hip, etc., ad nauseam.

Those little cancer cells are like ants at a picnic, who once they find the party, call for the queen to move on in and hatch some more.

I probably was at Stage IV for several years, until the mets to the liver enlarged to the point that I was having odd symptoms and just happened to mention them on a yearly check up.

Although the kidney tumor was as large as the kidney, it was still confined, but those little ants had gone to the liver and a set of lymph nodes.  After the 1st surgery in June 2006, enlarging single nodes were found on regular CT's.  So it was back to the OR in July of 2007 and again in June of 2008.

Since numbers can be used to make comparisons, I was staged at a IV, T2N2M1, Fuhrman upgraded from a II-III to a III-IV.  The good news is that everything is chronic but stable for the past 6 years. 

You cannot quite ignore the fact that you've had cancer and it could reccur, again.  But you sure try to forget about it for long periods of time.  Except just about everyone in this community knows me, and when they ask, "How are you?" and look you straight in the eyes...you say OK and are getting along well.  Even though life throws you other ups and downs to deal with.

That's what being a survivor is all about.

For all of you, keep on getting the tests, and hang in there.  We need more survivors.

Hugs to all.

Donna

foroughsh

Grade 2 is good

Grade 2 shows that tumor cells aren't that aggressive compared to grade three or four which is good, i've seen really few patiants with grade one so seems grade two is best possible one. It's normal to have good and bad days during first months, some days full of  positive thoughts and some other days not hopeful at all but then you'll get used to it and learn how to enjoy life after cancer diagnosis and you'll learn how to less worry.

hope his next CT report is NED, it'll help you a lot.Forough

 

 

Jojo61

Hi Demi, Your husband's path

Hi Demi

Your husband's path report is similar to mine. I am stage 3, grade 2, renal sinus fat invasion, lymphovascular invasion (all the path reports have a little bit of a different jargon). T3a,M0N0, hilar lymph node present.

I had my nephrectomy December 2, 2013. I have been very fortunate to be NED so far! It is always good to hear about what other doctor's opionions are like on this...you pick up little tidbits here and there.

Donna, your analogy of ants at a picnic is bang on!

Keep up with the scans!!

Hugs

Jojo

Dembel

Jojo61 said:

Hi Demi, Your husband's path

Hi Demi

Your husband's path report is similar to mine. I am stage 3, grade 2, renal sinus fat invasion, lymphovascular invasion (all the path reports have a little bit of a different jargon). T3a,M0N0, hilar lymph node present.

I had my nephrectomy December 2, 2013. I have been very fortunate to be NED so far! It is always good to hear about what other doctor's opionions are like on this...you pick up little tidbits here and there.

Donna, your analogy of ants at a picnic is bang on!

Keep up with the scans!!

Hugs

Jojo

Like the ants!

Hihi,

Donna, I really like the ants-comparison, haha, it made me laugh although it really isn't that funny, but bang on indeed!

Jojo, your story sure sounds like my husbands! The jargon is a bit different probably also because I'm translating from Dutch ;-)

How regular do you have full scans? Do the doctor's also worry about your healthy kidney for the contrast?

Another question to you all, did you, and how soon after operation, get back to work? By husband got 6 weeks off work and is supposed to work again full time mid August. He is also convinced he will do so, I'm not sure, he's quickly tired still....

We will see how that turns out!

thanks to all of you

Demi

Jojo61

Dembel said:

Like the ants!

Hihi,

Donna, I really like the ants-comparison, haha, it made me laugh although it really isn't that funny, but bang on indeed!

Jojo, your story sure sounds like my husbands! The jargon is a bit different probably also because I'm translating from Dutch ;-)

How regular do you have full scans? Do the doctor's also worry about your healthy kidney for the contrast?

Another question to you all, did you, and how soon after operation, get back to work? By husband got 6 weeks off work and is supposed to work again full time mid August. He is also convinced he will do so, I'm not sure, he's quickly tired still....

We will see how that turns out!

thanks to all of you

Demi

Demi - we share another

Demi - we share another common thing.....my family is from Holland! I was born here but both my parents and oldest sister were born in Holland. I am in Canada.

What area are you from? My family is from Noord-Brabant.

After my surgery, I went back to work after 6 weeks, but have a desk job. Hopefully your husband doesn't have a job that is very physical. He will be tired for quite a while...but as long as he takes it easy, he will eventually build up his energy.

I have scans every 6 months. After my last scan (at 16 months) my doctor thought I could start at one year intervals, I said no. He is concerned about the radiation, but what I have learned here, is that the radiation buildup takes a long time before it can pose a danger (decades). My recurrence factor outweighs the other danger.

Knuffels,

Jojo

 

 

a_oaklee

I like Galrims response.

I like Galrims response.  the path report could be better, but it could be worse.  The important thing here is your partners attitude.  Sounds like he is a glass half full type of person.  if I were you, I would celebrate.  Drink champagne.  

Galrim

Dembel said:

We have the result.....lots of info, some good news also, the swollen lymph node turned out to be a ganglioneuroma, nothing to do with the cancer.

 

The result is as follows:

- invasive renal cell carcinoma, clear cell, 7,5cm diameter

- Furhman grade (nuclear grade) 2

- invasion of hilar, perpelvic fat tissue

- vascular invasion of segmentary branches of the vena renalis

- adrenal gland free of tumor

- pyelum and urether free of tumor

- one hilar lymphnode free of tumor

- gland kidney hilus free of tumor

- and then the ganglioneuroma on one side

 

TNM (7th edition UICC): pT3a pN0 (0/2 hilar lymphnodes) pMX

 

I think we feel happy, relieved, although not easy to get your head around all these codes and numbers.

 

Plan is contract scan 4 months after operation, since he will still be seen as a high-risk patient.

 

Anybody any thought on this result?

thanks

Demi

There is stage 3 and there is stage 3

looking at the details from the path report, you could be worse off as far as independent prognostic factors goes. Of course there is an increased recurrence risk, but on the other hand you also have several things placing you in the lower risk segment of stage 3. Relatively small tumor size all things considered. Fuhrman grade lower than 3/4. No extensive necrosis or sarcomatoid features etc. 

/G

todd121

Dembel said:

Like the ants!

Hihi,

Donna, I really like the ants-comparison, haha, it made me laugh although it really isn't that funny, but bang on indeed!

Jojo, your story sure sounds like my husbands! The jargon is a bit different probably also because I'm translating from Dutch ;-)

How regular do you have full scans? Do the doctor's also worry about your healthy kidney for the contrast?

Another question to you all, did you, and how soon after operation, get back to work? By husband got 6 weeks off work and is supposed to work again full time mid August. He is also convinced he will do so, I'm not sure, he's quickly tired still....

We will see how that turns out!

thanks to all of you

Demi

Staging and Follow Up

My tumor was small for Stage 3, but I turned out to be Stage 3 because the tumor had invaded some blood vessels in the kidney (it was in the center of the kidney). I sat at Stage 3 for 2 years and then they found a tumor in that adrenal gland (they left mine when they did the nephrectomy), so that made me Stage 4. I was Grade 3 though (more aggressive than Grade 2).

Yes. They should monitor the kidney function before they decide whether to use contrast or not. Creatinine values (my oncologist's policy) over 1.4, and they won't use contrast. Some other oncologists may use contrast but give you a reduced dosage, or hydrate you really well to reduce chances of kidney problems.

There are guidelines given out by the national cancer institute (part of the NIH) for different stages and minimum follow ups. I wouldn't be comfortable with less than a chest/abdomen/pelvic CT (with contrast if possible) every 6 months for the first 3 years and yearly after that to 5 years, and I'd want yearly after that pretty much forever. Kidney cancer is very unpredictable and you want to catch a recurrence early while it might be operable as opposed to catching late stage metastatic kidney cancer. I was Stage 3 and I had chest/abdomen/pelvic CT (no contrast because my kidney isn't functioning that well, my creatinine is 1.7) every 4 months for first year, then every 6 months for second year. Now I'm back to every 3 months because I had a recurrence in my adrenal gland.

You might ask for a nuclear bone scan just at the beginning to rule out bone mets and a brain MRI to rule out brain mets. I had both because I went into a study and they wanted to make sure I was really Stage 3 and not Stage 4 when I entered the study.

I went back after 6 weeks. It was hard at first. Sitting was the most uncomortable position for me and I have a desk job. I tired easily for the first couple of months. You heal a lot slower on the inside than on the outside. I think it took me a year or more to get used to having one kidney. Your body needs to make adjustments.

Monitor blood pressure closely. High blood pressure is very hard on the kidney and you want to protect kidney function. Don't over eat protein. Excess protein is also hard on the kidney. Drink lots of fluids, dehydration is bad for the kidney. Cut back on salt and potassium. I see a nephrologist regularly to monitor my remaining kidney. Not a bad idea.

Hope something I said helps.

Best wishes,

Todd