New member. 4 years post nephrectomy, new nodule

Maroon2472

Hi everyone. I'm a new member. I found out incidentally in 09 that I had an entire kidney full of a tumor. No symptoms. Had CT for  years of headaches when tumor found. Removed with Davinci robot. Graded 3Tb bc it had already begun growing into my renal vein. The type is very rare and called chromophobe type.  Apparently, its the least aggressive.  Little about me... I was 33 at the time, newly married, and my son was 14 then.  Had X-rays every 6 months and CT every year. My urologist is very on top of things and I adore him. Went in last week for yearly results and ct of abdomen and pelvis fine, bloodwork perfect but 7 mm nodule on X-ray. Doc was relieved I was just getting over cold and cough and says wait 4 wks for chest Ct and he believes it will be clear. I cannot help but worry. A nodule is a nodule. Decided to google it and it got me here

icemantoo

I also had small nodules on chest CT.

My post from a coupke of days ago was about Cardiac issues which were raised on a chest CT and resolved favorably by further testing. I also had 2, 4 mm nodules on that same CT. My Pulmonologist said that at 4 mm they are too small to be of a concern, but that I should have a further CT to see if the nodu;es grow. He would not be concerned unless they were at least 8 mm.

I did a little googling and at 8mm rhere is a .80% chance of the nodule being malignant or 4/5ths of 1 %.

 

In conclusion there is little to worry about at 7 mm unless it grows and your radiologst is already predicting it will disappear after you get better from your cold.

 Sounds ;ike your 4 years of survivordhip so  far is just the begining of many years  of survivorship

 

Icemantooto come.

Darron

Keep watching

I am sorry you are back to the worries. ushers small, a spot is a spot.

i have two lung spots that are being monitored along with an adrenal tumor. When they were identified back in January, Assad told our focus was on the adrenal gland, it was likely that 60-70% of people have similar spots or scars from previous illness.

Sounds like the same as you are hearing...may not be cancer, lets see if it grows.

be diligent with the scans, lets of new ways to attack if you do need to be treated.

Fizziwiz

FYI

There is a thread on here for chromophobe.  There aren't many of us!

stay vigilant,

Liz

Galrim

Nodules

Lung nodules can appear for a number of reasons. A cold or a pneumonia is actually among the more common of these. Obviously in your(our) situation having something "new" found in conjunction with a scan can be very scarry and makes you start thinking.

I think your doc is right to take a wait and watch approach on this, as there is a good chance its not RCC related at all (I have three nodules myself for example, and have had them for a lot of years now without any changes or growth).

That said, and I know this is may be a tad strange message to give you now, but just in case: *IF* its actually a RCC met, then as RCC mets go a solitary lung met is normally very treateable, and provides a relative good chance of complete resection and thus future prognosis.

Fingers crossed for it being just related to your cold.  

/G

Texas_wedge

Chromophobe

Maroon, I'm compiling a database of chromophobe RCC patients in the hope of turning up interesting insights about this rare form of cancer.  So far, I've logged in info for 24 of us and some intriguing features seem to be emerging.  The more patients I can record, the more useful the database promises to be.  I'd be grateful if you could give me details of your own case.  The information I've collected is as follows:

Gender,  Age,  Date of diagnosis, Stage, Grade (if given one) Tumor size, L or R, Residence, Ethnicity, Blood Gp,  Surgery,  Drug treatments (if any), any Sarcomatoid or Rhabdoid component

For you, I'm figuring:

 F,  37,  ? of '09,  Stage 3b,  US, Caucasian, Nephrectomy,  no drug treatments, no sarcomatoid or rhabdoid involvement.

I'd be grateful if you could confirm that as correct  (or give me the correct info if wrong) and tell me the month of your diagnosis in 2009, the grade (1-4) if they gave you one (we chromies don't fit into the usual Fuhrman grading scheme! so they may not have given you a grade) the size of your tumor as stated in your path report, whether it was your left or right kidney,  and your blood group.

You've probably already seen how friendly a group this is and how much useful information you can find, or ask for here.  Please let us know how your story goes on from now - hope you're over your cold and that the next scan is an all-clear.

NTonawanda

Texas_wedge said:

Chromophobe

Maroon, I'm compiling a database of chromophobe RCC patients in the hope of turning up interesting insights about this rare form of cancer.  So far, I've logged in info for 24 of us and some intriguing features seem to be emerging.  The more patients I can record, the more useful the database promises to be.  I'd be grateful if you could give me details of your own case.  The information I've collected is as follows:

Gender,  Age,  Date of diagnosis, Stage, Grade (if given one) Tumor size, L or R, Residence, Ethnicity, Blood Gp,  Surgery,  Drug treatments (if any), any Sarcomatoid or Rhabdoid component

For you, I'm figuring:

 F,  37,  ? of '09,  Stage 3b,  US, Caucasian, Nephrectomy,  no drug treatments, no sarcomatoid or rhabdoid involvement.

I'd be grateful if you could confirm that as correct  (or give me the correct info if wrong) and tell me the month of your diagnosis in 2009, the grade (1-4) if they gave you one (we chromies don't fit into the usual Fuhrman grading scheme! so they may not have given you a grade) the size of your tumor as stated in your path report, whether it was your left or right kidney,  and your blood group.

You've probably already seen how friendly a group this is and how much useful information you can find, or ask for here.  Please let us know how your story goes on from now - hope you're over your cold and that the next scan is an all-clear.

RCC Chromophobe Information for the Database

I am new to the forum and would like to give you my info for the database. (let me know if I forgot anything)

Female - 56 years old at diagnosis

Date of diagnosis - 8/2009

Stage - 3 - Grade - 4

Tumor size : 3.67

US -Caucasian - Blood group B-

Rt. Nephrectomy

No drugs, treatment, sarcomatoid or rhabdoid involvement

 

 

Texas_wedge

NTonawanda said:

RCC Chromophobe Information for the Database

I am new to the forum and would like to give you my info for the database. (let me know if I forgot anything)

Female - 56 years old at diagnosis

Date of diagnosis - 8/2009

Stage - 3 - Grade - 4

Tumor size : 3.67

US -Caucasian - Blood group B-

Rt. Nephrectomy

No drugs, treatment, sarcomatoid or rhabdoid involvement

 

 

RCC Chromophobe

Welcome and thank you for the information for my database!  You haven't overlooked anything but please confirm my reading that you aren't on any current treatment. 

I'm happy to see that although you were assigned 'grade 4' (which is not really applicable, usefully, to chromophobe) you don't have sarcomatoid or rhabdoid components.

I'm looking forward to updating my db, since your data fits neatly into the patterns I have been finding so far!

NTonawanda

Texas_wedge said:

RCC Chromophobe

Welcome and thank you for the information for my database!  You haven't overlooked anything but please confirm my reading that you aren't on any current treatment. 

I'm happy to see that although you were assigned 'grade 4' (which is not really applicable, usefully, to chromophobe) you don't have sarcomatoid or rhabdoid components.

I'm looking forward to updating my db, since your data fits neatly into the patterns I have been finding so far!

Database

Yes, you are right - I am currently not on any treatments.

Texas_wedge

NTonawanda said:

Database

Yes, you are right - I am currently not on any treatments.

Database

Thanks for confirmation. 

It's interesting to see how many chRCC patients have had only a nephrectomyand have not needed any other treatment (so far, at least).

TillieSOK

Texas_wedge said:

Database

Thanks for confirmation. 

It's interesting to see how many chRCC patients have had only a nephrectomyand have not needed any other treatment (so far, at least).

I just joined today.

I just joined today.  Diagnosed April, 2013. ChRCC.  6cm minimally entering renal vein, clear margins post nephrectomy. Doctor did not give me a stage or grade. Adrenal gland was not removed. Right kidney.  I am a female, age 67, Caucasion, no further treatment, except regularly scheduled scans and X-rays.  Have 50cent size " probable hemangioma" on right anterior lobe of my liver. Blood group O rh-

if you  need any other information, let me know.

Tillie