Pathology Report
Got a call from my surgeon today. He said it was chromophobe RCC. I looked that up and it's apparently a rare form of RCC, diagnosed in only 5% of cases. What's strange is that it seems to be hereditary, but neither of my parents, nor any of my four grandparents had (to my knowledge) kidney cancer. Of course, since the surgeon said it was a very non-aggressive form of the disease, maybe one or more of them had it, but something else go to them before the RCC could. My mom died of colon cancer and my dad of a combined broken heart (from my mom's passing) and from being 90 years old with COPD. His dad died your from a ruptured aorta and his mom died of what would later come to be Alzheimers complicated by breast cancer. My maternal grandmother died of Alzheimers and my paternal grandfather died because a nurse told him he was 100. He told her he didn't want to be 100, so he died the next day. Amazing what the human mind can do. At any rate, I've shown the report below for any and all to look at. Negative edges and no movement into any fat or the surrounding blood vessels or lymph nodes, so he rated the odds for success at high 90's%. I'll have a scan every six months for two years and then once a year for another two years, but that's pretty prudent.
I guess I could sum it up bay saying
WOOOOOOOOOHOOOOOOOOOOO!
Here's the pathology report.
RENAL CELL CARCINOMA SUMMARY
Site Upper pole of the right kidney (per EPIC notes)
Specimen Type Partial nephrectomy
Focality (unifocal, multifocal) Unifocal
Tumor Type Chromophobe renal cell carcinoma
WHO/ISUP Grade (1-4) Not applicable
Sarcomatoid Differentiation Absent
Microscopic Tumor Necrosis Absent
Size (cm) 1.7 cm
Perinephric Fat Invasion Absent
Renal Sinus Fat Invasion Absent
Invasion Beyond Gerota's Fascia Absent
Renal Vein Invasion Absent
Vena Cava Invasion Absent
Lymphovascular Invasion (other than renal vein) Absent
Adrenal Gland Involvement (Direct or noncontiguous) Not present
for evaluation
Resection Margin Negative
Lymph Node Status, Hilar Not present for evaluation
Largest Metastatic Focus Not applicable
Extracapsular Extension Not applicable
Nonneoplastic kidney Mild arteriolonephrosclerosis
Distant Metastasis Not evaluated
TNM Stage (AJCC, 7th Edition) pT1a
CLINICAL HISTORY: Right renal mass.
OPERATION: Robotic right partial nephrectomy.
OPERATING ROOM CONSULTATION:
ORA: RIGHT RENAL MASS, PARTIAL NEPHRECTOMY
-- LESION 2 MM AWAY FROM PARENCHYMAL MARGIN ON GROSS EXAMINATION
(Shain/Zambrano)
GROSS DESCRIPTION: One specimen is received labeled with the
patient's name and medical record number.
The specimen labeled "right renal mass" is received fresh from the
operating room and consists of an unoriented tan-pink partial
nephrectomy specimen (6.0 g, 3.0 x 2.6 x 1.5 cm). Sectioning
reveals a circumscribed yellow-tan firm mass (1.7 x 1.7 x 1.2 cm)
with focal hemorrhage at central aspect, adjacent to the intact
overlying renal capsule and is located 0.2 cm from the resection
margin. No other lesion is recognized. The uninvolved parenchyma
is homogeneous, light tan and smooth. The resection margin is inked
black. An operating room consultation is performed. After formalin
fixation, the specimen is serially sectioned and entirely submitted
sequentially in cassettes A1 to A7, with A7 containing perpendicular
sections. Li (6/23/2016)
Comments
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Most defintely not a bigicemantoo said:Add
The only thing I would add based upon my experience is after 4 years an Ultrasound yearly in case anything new develops in the other kidney and if so it is caught in the bud.
Icemantoo
Icemantoo
Most defintely not a big issue for me to have an US. Thanks ice!
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How sweet
You had a tiny little chromophobe tumor. I don't know much about it except it's rarer than clear cell. At least it was small and they got it all.
The only thing about chromophobe and rarer cancers is I'm not clear about prognosis or treatment possibilities. Hopefully since it was tiny and they got it, you'll never have to worry about that. Probably a good thing. A very good thing.
Best wishes,
Todd
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me too
Hi Bay Guy!
I also have ChRCC. My surgery was June 7. Pathology was almost exactly like yours, but mine was 1.3 cm. From everything I have read, we are lucky. No sarcoma, no necrosis means not aggressive. Again, from what I read, our diagnosis is as good as it gets, so to speak.
There are 2 types of ChRCC, type 2 is hereditary, and more aggressive.
My Dr is scanning me only once a year. I am going to ask if I should be scanned every 6 months. But- I think because of the type they don't want to expose us to radiation if they don't have to.
Celebrate your good news.
Blessedgirl94
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Todd and Blessedgirl
Todd: Prognosis is excellent, particularly in lesions of the size the Blessedgirl and I were found to have. The surgery is, in fact, the treatment, and as long as there was no spread into adjacent structures, the cure rate is extremely high. No doctor will tell you anything is a certainty, but the surgeon rated the success rate in the very high 90%'s.
Blessedgirl: Wow, that's pretty amazing that two people on the board would have the same rare condition and have surgery only two weeks apart. Hopefully, you were able to get what I got.....a robotic assisted laparoscopic procedure. I had mine done at Stanford Hospital and it was on June 22n. In fact, as I'm writing this, I was in the recovery room exactly one week ago. I'm fortunate in that I've had pretty much no post-operative pain other than the normal discomfort associated with pulling sutures, and I did end up getting one heck of a bruise on my right thigh (same side as the surgery). When the surgeon called today to ask how I was doing before giving me the pathology report, I said I was fine except for where you whacked me in the hip with the baseball bat. He didn't understand what I meant at first, but when I explained, he actually had a good laugh. I don't think surgeons get teased a lot by their patients, but for as long as I'm with this guy, he'll learn.
As for the scans, I think iceman is correct. I think the scans will likely be ultrsounds instead of CT scans. A couple of scans a year would result in far more radiation than I care to think about. Besides ultrasound is a lot cheaper than either the CT or an MRI.
Hope your recovery is going well!
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Bay Area Guy & Blessedgirl
Someone must be watching over both of you, that this was caught so early, your surgeries apparently went well and recovery is in progress. From the looks of your pathology report, you'll probably never have to walk this road again. Just keep up with your follow-up appointments.
Bay Area Guy, love the bio's on your family members, such sweet men in your life, huh?
God bless,
Donna~
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For Certainhardo718 said:Bay Area Guy & Blessedgirl
Someone must be watching over both of you, that this was caught so early, your surgeries apparently went well and recovery is in progress. From the looks of your pathology report, you'll probably never have to walk this road again. Just keep up with your follow-up appointments.
Bay Area Guy, love the bio's on your family members, such sweet men in your life, huh?
God bless,
Donna~
You got that right Donna. My parents were both wonderful people, as were my maternal grandfather and grandmother, as well as my paternal grandmother. I never got to now my paternal grandfather. As noted, he died from a ruptured aorta when I was less than one year old. I'm told that when I was born, he was so happy because I was the only boy in the family that could continue the family name. I heard some very interesting stories about him and would have loved to get to know him. On a side note, my dad had to have his aorta replaced about six months after having one of the first quinituple bypass surgeries ever performed. What was even worse about it was that the surgery was scheduled on the anniversary of the very day his father have died of the rupture. Talk about seriously unsettling omens going into surgery!
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Chromophobe is NOT heriditary
Just FYI. There is an inherited syndrome (unrelated to cancer) that people with this syndrome may get chromophobe RCC. But I repeate IT IS NOT HERIDITARY. I've heard that from the words of the most esteemed doctors here in So Cal at a conference.0 -
Just as an FYI
Types of Renal Tumors (Source Memorial Sloan Kettering Cancer Center):
Renal cortical tumors are a diverse group of tumor types that can exhibit very different clinical behaviors, meaning that their risk of spreading to other areas of the body varies. These tumors can be either benign (noncancerous) or malignant (cancerous). Renal cortical tumors are categorized into the following types:
· Conventional, or clear cell, which accounts for 60 to 65 percent of cases.
· Papillary, also known as chromophil, which makes up 10 to 15 percent of cases.
Papillary carcinomas can develop as individual or multiple tumors, appearing either in the same kidney or in both kidneys. There are two types of papillary cancers, type 1 and type 2. Type 1 are more common and usually grow slowly. Type 2 papillary tumors represent more than one category of disease but, as a group, are much more aggressive and may follow an unpredictable growth pattern.
Papillary carcinomas have been associated with genetically inherited syndromes, including hereditary papillary renal cell carcinoma (HPRCC) and hereditary leiomyomatosis and renal cell carcinoma (HLRCC). HLRCC is a relatively rare, inherited form of kidney cancer that is difficult to diagnose before surgery in patients without a known family history of the disease. Genetic testing is available for individuals suspected of having the syndrome.
· Chromophobe, which accounts for 5 to 10 percent of kidney tumors. These are considered a less aggressive form of primary kidney cancer. Chromophobe tumors may reach a very large size before there is any risk of spreading outside the kidney.
· Oncocytoma, which makes up 5 to 10 percent. Oncocytomas have almost no risk of spreading or causing death.
· Collecting duct, which makes up less than 1 percent. This is a very rare and aggressive type of tumor that is more common in younger adults and doesn’t respond to conventional therapies for renal cortical tumors.
· Unclassified, which makes up 3 to 5 percent. These rare tumors look different under the microscope than other kidney cancer subtypes and are usually very aggressive.
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Congrats
Welcome to the Chromophobe club! Mine was just like yours, but I had two spots 2.2cm and 0.8cm. Your path report is about as good as it gets as far as cancer goes. Chromophobe is a more an indolent type of cancer and it's slow growing. Now if it has sarcoid features or necrosis, well then that's a different story, but you had neither so count your blessings.
Blessedgirl94, I thought papillary RCC had two types, one of which is hereditary. I think there is only one type of chromophobe.
I too asked about scanning every 6 months, but my doc said that was way too much radiation for our type of cancer, so It’ll be just once a year for me.
In September I am going back to MD Anderson for genetic counseling, because of my age and the fact that I had two spots that were both chromophobe. I will pass along everything that I learn from my visit.
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You're right!!!!
In my CAT scan and MRI both said most likely papillary. When my pathology came back it was chromophobe. So I think I got mixed up!
Medic-- you will be scanned only once a year also? That makes me feel better. I couldn't find any sort of protocol for chromophobe follow up.
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Yes ma'am
Yeah I will have CT scan once a year and a chest x-ray once a year. They will stagger those 6 months apart from each other. So in 6 months I will have chest x-ray and 6 months after that I will have CT scan. This will go on for two or three years, I think.
I wanted to have a CT scan every six months, but my doctor was like no way. He said that is way too much radiation exposure for my age, stage, and type of cancer. I looked into a little further and there is about 160 times the radiation exposure from a CT adb/plevis with/without contrast than there is with chest x-ray. So that begs the question, why not just do an MRI, cost???
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Thanks?
Medic
LOL. Forgive me for not being overly enthusiastic about joining the chromophobe club. I'd much rather be an outsider observer, but thanks. My sister is a nurse practitioner. Granted, it's in child neurology, but she's versed in a ton of stuff. She said exactly what you did about the path report. So long as I had to have this thing, I'm glad it's as good as it can be.
We're both of your spots on the same kidney?
By the way, has anyone considered or actually undergone the ablation treatment for this? It was offered to me, but my urologist strongly recommended the partial. Just wondered what others might have experienced with ablation.
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Chromophobe is not heriditarymedic1971 said:Congrats
Welcome to the Chromophobe club! Mine was just like yours, but I had two spots 2.2cm and 0.8cm. Your path report is about as good as it gets as far as cancer goes. Chromophobe is a more an indolent type of cancer and it's slow growing. Now if it has sarcoid features or necrosis, well then that's a different story, but you had neither so count your blessings.
Blessedgirl94, I thought papillary RCC had two types, one of which is hereditary. I think there is only one type of chromophobe.
I too asked about scanning every 6 months, but my doc said that was way too much radiation for our type of cancer, so It’ll be just once a year for me.
In September I am going back to MD Anderson for genetic counseling, because of my age and the fact that I had two spots that were both chromophobe. I will pass along everything that I learn from my visit.
I repeat, it's not heriditary. It is a sporadic cancer. I would not worry about genetic counselling for that reason. I've heard Dr. Figlin explain that out of Cedars Sinai. Unless you have a specific syndrome, which you would already know:
Birt-Hogg-Dubé syndrome (BHD). BHD is a rare genetic condition associated with multiple noncancerous skin tumors, lung cysts, and an increased risk of noncancerous and cancerous kidney tumors, specifically chromophobe or oncocytoma. People with BHD may also develop clear cell or papillary kidney cancer.
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