Thoughts?

Hi Sarah... that report is similar to mine, but no where near as bad as mine.  My best guess is that scans every 90 days for up to about 2 years, then go to 6 months.  The tumor was on the large side.. but not as large as mine was.  Just gotta go with it.. and hope it does not come back...

Ron

Hi, Sarah. I could explain my initial path report for comparison's sake, but you really need to know about the specifics of your husband's. So I'm hoping that someone picks up on my subject line here and sees it, because there is a member on this board who can actually read and interpret. Hopefully he can respond.

If you are curious, my initial indicated Grade 4 Stage 4 with metastesis as follows: innumable nodules in the lungs, 4cm mass (ish?) in my right (remaning) kidney, a lesion in my right adrenal gland, and a 2cm mass at my T3 verterbra. 6 weeks following my radical neph + 16 lymph nodes and a slice of my spleen I started on Sutent 50mg 28 on / 14 off-day cycle. That was July, 2012. So if I do my math I'm on my 12 cycle. My CT Scan from ~8 months ago showed remarkable progress: No local recurrences, Lungs classified as "Normal", mass in right kidney did not appear, right adrenal down in size to smaller than 1x2cm, and the spinal lesion having shrunk to this "flat thing" about 1.7 x .7 cm. My following 3 scans were "stable". Doc will put me on 6 month schedule if the next one on 12/23 is stable as well.

I am posting more on this update if you want to read more, and best of luck to your husband. Make him order "3 months to LIFE" by Gerald White and order and USE the companion Guided Imagery CD. Don't hesistate. Anyone on this board will tell you the same.

God speed,

Vin

First, refer here: http://www.cancer.net/cancer-types/kidney-cancer/stages

1. Histologic: Renal Cell Carcinoma (RCC); subtype = Clear Cell (ccRCC). This is "garden variety" RCC - by far the must common (approximately 83%) sub-type although it's anything but routine if you have it.

2. Grade 2: The tumor is larger than 7 cm and is in the kidney only. It has not spread to the lymph nodes or distant organs (T2, N0, M0).

3. Largest diameter: 10cm

4. Location: Within kidney - at the superior pole; tumor is growing around the renal pelvis. Tumor involves some of the renal sinus fat. Tumor is in the hilar renal vein; Tumor also in intrarenal and lymphatic veins. Tumor is seen to have penetrated capsule and in perirenal fat in one of the slides (A6).

5. Ureter is normal (no invasion).

6. Adrenal gland is normal (no invasion).

7. Adjacent lymph nodes appear normal.

8. After surgery resection: Ureter was clear; clear margins were achieved in the renal vein and soft adjacent tissue.

pT3aNX:

T3a: The tumor has spread to the large vein leading out of the kidney, called the renal vein, or the muscles of the vein, or it has spread to the fat surrounding the kidney and/or the fat inside the kidney. The tumor has not grown beyond Gerota's fascia.

NX: No Lymph nodes were removed so there was no biopsy and therefore unconfirmed prognosis.  But they can be assumed to be normal.

Conclusion:  You had a relatively large tumor that was fully confined inside the kidney but did invade some veins and peripehral fat.  That somewhat raises the risk of metastasis in the future.

[Please kind in mind that I am no expert - I may be mistaken in my interpretation of what you have presented here.]

srbelle1 said:

how would you factor the mets

how would you factor the mets to his spine that were surgically removed before the nephrectomy?

the oncologist gave us the first glimmer of hope before the nephrectomy considering the mets as not that significant given the size (through MRI and scans) of the kidney mass.

thanks, Sarah

Sarah.  I was unaware of any mention of mets.  If there were any then he should have been classified as Stage IV, regardless of where they were found.

Were those mets biopsied?  If so, what did the pathology report state?  Did it confirm that they indeed were from the same primary RCC tumor?

Something does not add up here - at least as you have described it.

Sarah, I think it's really good that your husband had his kidney tumor removed.  It decreases the tumor load, so that the targeted therapy can hopefully be more effective to the remaining tumor cells.  My husband also has clear cell RCC with mets to bone.  His spine surgery was performed first, and then the nephrectomy.  Because of the mets your husband is Stage 4.  The NX just means that no lymph nodes were checked.  There was no sample for the pathologist to look at.  The surgeon would most likely tell you this is because what he saw looked normal, and for that reason one was not removed for biopsy.  My husband had one lymph node removed and it was also positive for RCC.  You also said your husband was Grade 2.  It is my understanding that the grade refers to how far the cells have morphed/mutated into a different looking cell structure.  The higher the Grade number, the worse it is.  My husbands grade is grade 3.  (the scale is 1 to 4).  It is called Fuhrman Grade.  I hope your husband is taking xgeva for the bone mets.  It's been almost 2 years since my husbands diagnosis and I think he is doing well.  I must also say that I am far from an expert in these matters, just what I have learned along the way.  Best wishes and good health to your husband.

srbelle1 said:

you are the first so far with

you are the first so far with similar experience; the first bloodwork after the nephrectomy showed improvement in creatinine levels and Kidney function. He is not on any medications at this point. 

The surgeon thinks he should be but the onc says the latest studies suggest watching to see how the cancer behaves. We see them in a couple of weeks and see what they recommend.

the surgeon was surprised at it being grade 2; my uneducated thought is the lower grade may indicate that it has been there for a while before going to the spine. Two spots; the lumbar was surgically removed with clean margins, the thoracic met <2 cm) got cyberknife radiation. Any cancer left is now microscopic.

the surgeon told me that the nodes looked clear when he did the nephrectomy.

my theory of the grade 2 may be wishful thinking; over 20 years ago, I had breast cancer, large but the path showed it reasonably slow-growing and not in the nodes despite its size and how long I had ignored it. 

I declined chemo despite all docs strongly suggesting it; I am still here, no recurrence. kidney cancer, i know, is different so it may be spousal wishful thinking. how great that your husband is doing well; We live in northern CA, what about you? It is so good to find a kindred spouse.

sarah

 

2006 DX'd at Stage IV, Path at T2,N2,M1, Fuhrman III/IV.  Removed right kidney with a 10x11x12 cm tumor, left lobe of liver with slightly smaller mass, and set of nodes posterior to kidney with 2 of 11 positive; and a gall bladder with a defective main bile duct.

2007 recurrence in a single node in the fossa (cavity) left by removal of kidney.  Surgery.

2008 recurrence in a single node in pelvis.  Surgery.

No chemo/targeted or otherwise, as there was nothing to go after.

2013- 5 plus years NED and still having regular CT's or ultrasound/chest Xrays.

Donna

srbelle1 said:

you are the first so far with

you are the first so far with similar experience; the first bloodwork after the nephrectomy showed improvement in creatinine levels and Kidney function. He is not on any medications at this point. 

The surgeon thinks he should be but the onc says the latest studies suggest watching to see how the cancer behaves. We see them in a couple of weeks and see what they recommend.

the surgeon was surprised at it being grade 2; my uneducated thought is the lower grade may indicate that it has been there for a while before going to the spine. Two spots; the lumbar was surgically removed with clean margins, the thoracic met <2 cm) got cyberknife radiation. Any cancer left is now microscopic.

the surgeon told me that the nodes looked clear when he did the nephrectomy.

my theory of the grade 2 may be wishful thinking; over 20 years ago, I had breast cancer, large but the path showed it reasonably slow-growing and not in the nodes despite its size and how long I had ignored it. 

I declined chemo despite all docs strongly suggesting it; I am still here, no recurrence. kidney cancer, i know, is different so it may be spousal wishful thinking. how great that your husband is doing well; We live in northern CA, what about you? It is so good to find a kindred spouse.

sarah

 

I read your profile.  My husband was also treated for low back pain but only for a couple of months.  He then experience blood in his urine and while in the emergency room they did a cat scan and found the renal tumor.  We were referred for surgery and had a CT/PET scan which showed the mets to the spine.  Emergency surgery was done to stabilize his spine.  Due to the mets in the bones, the nephrectomy was not scheduled.  He immediately was started on targeted therapy.  CT/Pet scans are done every two months initially.  The mets kept growing and the targeted agents were changed.  We went to a different facility because he wanted a nephrectomy.  After the nephrectomy, he started Inlyta.  His last scan showed no evidence of metabolic activity.  He takes 7 mg of Inlyta twice a day.  Gets a shot for his bones once a month.  My husband does have a lot of pain in his back and has continued on pain meds.  Does your husband also have extreme back pain and need medication?  His surgery was March 2012 and the pain just doesn't go away.  I wonder if everyone with bone metastases feels pain, or if it is pain from the laminectomy and spinal fusion. 

srbelle1 said:

my husband had surgery to the

my husband had surgery to the spine on July 24, 2013 and it has been a tough recovery but the pain has diminished for the most part. He takes tramadol, baclifen and neurontin and will start physical therapy on Monday. He plans on returning to tennis in a couple of months. The surgeon told us the bone might take a year to wrap around the hardware.

initially, the pain was excruciating and he took oxycodone and morphine; he ended up with a small bowel obstruction for a 15-day hospital stay which was absolutely miserable and where he lost 25 pounds.

then, he had the cyber knife radiation for the thoracic met; he only had 2 mets. The nephrectomy was laproscopic and was done on 9/20/2013.

we were pleasantly surprised at the grade 2 in the path report. He was riding his motorcycle, snorkeling and playing tennis until the day he demanded the MRI for the pain since he was tired of living on Advil so the shock was a punch to the gut, totally unexpected!

there was never a question about a nephrectomy; it was more of where do they start and there were pros and cons to both. While he was going through the obstruction, I pushed them to prepare for the radiation because I was visualizing the cancer running through his body. All scans done showed no changes fro the earlier ones but they began the radiation 2 days after release from the hospital in late August; the prep was done while he was in the hospital.

dealing with stage IV is a challenge; he, like your husband, listens to the docs and does as told although I do research and question all. When he had the path report explained, I was working so I couldn't ask the questions which is why I asked for them to mail it to me.

i may be Pollyanna but I refuse to accept stage IV as a death sentence; let him be the nice guy and I will push even if I get obnoxious. 

in the last weeks, he drives an hour to babysit our little granddaughter who is very active and she is the best pain med for him. We await a new one in March; when our son told us in late July, I wondered if he would be around. 

There are still some times when I cry and pray for acceptance; I nag him to drink water, search him for any sign of smoking, harass him if he is inactive. 

That's story to now; 4 months that has felt like 4 years.

sarah

And thanks for the "upper" about being around so long at Stage IV.  

The first node, found as a result of a March and then a May CT in 2007, was attached to the duodenum and the inferior vena cava.  It was in a location the readiologist could biopsy.

At that time, my oncologist felt he was safe ordering CT's 6 months apart.  The Dec. '07 and May '08, again showed a single enlarging node.  This time behind the main aorta where it divides to go down each leg, and behind the urinary bladder.  (the aortic bifurcation).  It couldn't be biopsied, but a PET made the node light up.

For those of you who haven't had a PET, the radioactive material is carried by a concentration of dextrose, injected a couple of hours before the exam.  Organs such as kidney, liver, thyroid will normally uptake the fluid.  Lymph nodes should not. It was a delicate surgery, but Doc Larson got it all.

The fly in the ointment was when enlarged nodes were found in my thyroid, by accidentally starting the scan above the clavical. An ultrasound, then nuclear scan, and finally a biopsy gave me the all clear.

But now, I alternated tests.  One time it will be a CT of thyroid, chest, abdomen and pelvis.  The next one will be chest X-ray and ultrasound of thyroid, abdomen and pelvis.

Vigilance and a bit of denial.  It seems unreal at times; and I can actually go a few days at a time without remembering that I've had cancer and a lot of organs removed.

All best wishes to you and your husband.

Donna