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Is this what I should be expecting?

DSFrey's picture
DSFrey
Posts: 57
Joined: Jan 2014

I have a generalized anxiety disorder and I have always been afraid of doctors. So much so that for all of my adult life I never saw one, about to turn 45 by the way. Recently my girlfriend gave me an ultimatum to get help for my anxiety or we were through. I love this woman with every fiber of my being so fought with myself to get treatment. Slowly I am beginning to overcome my anxiety, so much so that I decided it was time to get a regular physician and see if he could tell me why I was losing so much weight so quickly. He referred me to a GI specialist who got me an abdominal CT scan. Only thing abnormal it showed was a small tumor in a kidney, I don't even know which one, didn't think to ask. Well, he just tells me its a tumor, never uses the C word or M word and refers me to a urologist. The urologist takes a gander at my CT and tells me, "yes, you have a tumor and need a partial nephrectomy." Then he proceeds to schedule me for another CT, of the abdomen and chest as well this time, and also schedules me for upper GI endoscopy and colonoscopy with the GI specialist I saw earlier. Again, no one tells me that I have cancer or a malignant tumor, just a tumor. The CT is next week and I'll probably go through with it. The upper and lower GI tests I will have to cancel as I simply can not afford it at this time. Would take me several months just to save enough to put down on the procedure. Well, anyway I happen to be the curious type and I logged onto my insurance company's webpage and read my personal health record. In it I see the diagnosis by the urologist written as malignant neoplasm - kidney. After freaking out and doing alot of reading about tumors and cancer and kidneys it seems the urologist is just simply assuming I have some form of RCC. Is this normal? Shouldn't I be seeing an oncologist? What's the need of the upper and lower GI tests? I'm sort of freaking out and my anxiety is now at an all time high.

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Yes you should certainly an Onc. Giving that's its a partial is good news however. That means its small and located in a good place. I had a partial last year and everything went fine. With you being 45 I'm sure the surgery would bog over well for you. When I found out I was a mess also. Hang in there DS.

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Oh yea most every1 on this website knows more than me lol. So you will have better into in the morning. Try to get some sleep.

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

until proven otherwise, if it's a tumor rather than a cyst, it's "assumed" to be malignant and treated as such.  However.....several of our people here have had surgery and been blessed with a benign pathology report.  A partial is good, but more complicated than a full nephrectomy, due to having to reconnect everything.  Cliff notes version: With a radical, they snip it loose, bag it up and slide it out the largest incision. ;). Not quite that simple, but the partial IS a bit more complicated.  Hang in there.  Your insurance should cover your additional scans.  If it doesn't, check with the ACS and see if they can help with it.  I didn't have an upper and lower GI, just the chest/abdomen/pelvis CT.  I had my surgery in April, 2013 about 10 days or so after the tumor was found during a gallbladder ultrasound...full nephrectomy laparoscopically with robotic assist. Stage 3a Grade 2.  

icemantoo's picture
icemantoo
Posts: 1511
Joined: Jan 2010

DS,

 

Welcome to our Club.  It is enough to scare the sh.. out of anyone being told you have Cancer and that you are having major sutgery to boot. All of us went through it as a patient or caregiver. Mine was 11 and 1/2 years ago at a than young 59.. Faye across the street had hers 19 years ago and she will be 100 in 17 years. 

The upper and lower GI's are probably to look at other health issues as is the Colonoscopy. I have had them all although none were related to my RCC. The chest CT is a normal workup to make sure the RCC has not spread as the chest is where it first spreads. I and most others I thnk only had a chest xray though.

For those of us with small tumors 5cm or under the cure rate from the surgery alone is in the upper 90's percentile. I assume yurs is small because you are having a partial

Most Kidney tumors over 2 cm tend to be over 85% malignant. As said above they assume it is cancer until proven otherwise.

 

The reason they take the kidney or partial lidney out is that so far Kidney Cancer in the Kidney can not be treated otherwise (except for very small tumors) and Kidney Cancer which spreads can be very, very serious stuff.

 

Although this is the last place you want to be. Welcome anyway from the group and I who have all been there and done that.

 

Icemantoo

Skagway Jack's picture
Skagway Jack
Posts: 70
Joined: Oct 2013

After they remove the tumor and conduct a pathology, at that point you will know whether a oncologist will be necessary.  At this point they may (as in my case) suggest that it is likely cancerous, but you will not know for sure until its out.  The removal process is usually guided by a surgical urologist.  I did not employ a oncologist until after my radical nephrectomy.  Now my oncologist schedules and reads my CTs, and my urologist does my blood work.  Take it a day at a time and hang in there! 

DSFrey's picture
DSFrey
Posts: 57
Joined: Jan 2014

For all the insight and level headedness, thanks!

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

I had pretty much the same thing, but Im still waiting for the CT Scan/  I don't know why they haven scheduled me yet. I'm calling tomorrow.  Waiting is the worst.

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

I am still to this day confused about the Oncologist vs the Urologist/surgeon debate. When I went to get a second opinion right after my first 6 month exam the Oncologist said "your surgery went as it should, your pathology said you are cured, no cancer shown yet, I can't do anything for you that your urologist can't so goodbye" Wasted my time. Supposed to get a CT in 6 months to abdoman and pelvic region. Who reads and studies the CT scan for clues, the radiologist or the surgeon, or is that why an Oncologist is supposed to be better.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Stage 1 kidney cancer, if it is really stage 1, does not need to be followed by a medical oncologist.  Once a met is found, that is a different story.  The oncologist's job is to treat active diease.  Since most stage 1 cancer is "cured" by surgery -- that is, no cancer cells escaped the primary tumor to allow for a metastisis, there is no need for an oncologist, particularly if the pathology report shows a low grade.  Or, put another way, a grade 1 tumor at 3 cm has a 3% chance of recurrance.  Before the cancer, you had a 1-2% chance of developing Kidney cancer, as a member of the general population. The urologist/surgerical oncologist can monitor for recurrance.  Now, with higher graders -- grade 4 the recurrance rate increases to 15%, and with sarcomitoid features (recurrence rate may approach 50%), IMHO, the guidlines should change.

In my case, I had a T1b grade 4 with Sarcomitoid features clear cell.  A solitary met was found and removed.  Someone like me should be followed by a medical oncologist because I have a high probablilty of recurrance:  we know the cancer cells left the kidney, and there are probably more in my body, but we do not know where.  At the moment I am NED.  It is possible that I will remain NED forever.  But, more likely, something will pop up (based on statistics).  I am in the search for an oncologist, I have been dismissed from the research protocol I was in due to financial constraints of the federal government.  But, I have a little time....I do not need more scans until April or May. 

 

 

cubsfan9
Posts: 43
Joined: Oct 2013

Good Morning!

DHS explained it very well.  I would only add that if you are being followed by the urologist/surgeon you MUST be regularly checked (ie, CT scans) to make sure everything is still OK. 

In our case the original tumor was 11.5 cm and localized.  My husband received follow-up scans every 6 months for the first 5 years, then annually.  This was done by the urologist/surgeon.  8 years post-nephrectomy there was a large tumor on his pancreas that proved to be spread of the RCC.  At that point he was referred to an oncologist.

MeMeJoy
Posts: 68
Joined: Apr 2013

Just wanted to say hello and that I think it is normal for them to assume (based on certain criteria) that it is some form of RCC. But that they wont know 100% until its out. Freaking out is also perfectly  normal!!

I don't think it is common place for you to be referred to an onc unless there is evidence of cancer in other areas. Not saying it doesn't happen, its just my experience that it isn't routine. 

In my case they were sure I had RCC - tumor was ~ 10 cm, had grown 8+ cm in 3 years, family hstory of aggressive RCC, etc.

A week after my radical neph. the pathology came back and my tumor was actually a Mixed Epithelial and Stromal Tumor. Which was odd given that I have never been on estrogen therapy (including birth control) and was only 32 yr old. It would have been more probable for me to have had RCC than MEST. I know my situation isn't the norm. but it does happen.

My advice would be to have a serious talk with your doctor about the plan of action going forward. Be your own advovate! When they tell you they want you to have test XYZ, ask why and what the possible outcomes are and what those outcomes indicate.

I basically had flow charts when I went into see my doctor lol

If you aren't comfortable with the doc don't be afraid to get a new one.

Most importantly - breathe!

 

 

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Thanks very much....I think I got it now regarding when and why to get an oncologist as opposed to the surgeon. I just hope that they are both experts in the field of reading the Catscans down the the finest detail. Once you had RCC, it just seems like they should CT the entire body once a year though instead of just the abdominal area, these rare 6 or 7 year relapses might get caught earlier.

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