New Diagnosis - Stage 4 Kidney Cancer with Metastasis to lungs -- please advise :)

amyjoe,

When you said St Louis I was going to suggest  Barnes Jewish Hospital at Washington University as the top hospital in the State and area. I see that the Siteman Cancer Center is part of that. Usually they remove the kidney first, but I have seen a number of cases where there are mets and they try to shrink the mets first even where there is a large tumor. You are at a World Class Hospital and teaching facility where the doctors know what they are doing. I know it is easy to second guess them based upon whatmay appear to be the general protocol in most cases. Yours is not like most cases. Listen to and discus the various options with the doctors there.

Icemantoo

My husband was also 47 and was diagnosed in the ER with Stage 3 kidney cancer. Our then 8 year old daughter watched him suffer while I rushed him to the hospital. I hate this disease. HATE. So sorry you are here, but rest assured you will find support here. 

Some of my thoughts, real quick (since I've got to finish some paperwork, on a deadline, a teacher's work is NEVER done!!)

#1: I suggest a second opinion. I have heard of primary tumor removal at Stage 4 iniital diagnosis. It is worth a shot to get a second opinion. 

#2: The use of the word "chemo" is a mistake with kidney cancer but there ARE OTHER TREATMENTS for it that work to shrink tumors. They are equivalent, I suppose but many people misuse the word "chemo" to refer to "targeted therapy." Again, a second opinon with an oncologist well versed in this cancer is recommended if humanly possible. Sometimes tumors are shrunk with the drugs BEFORE surgery, but I am not sure if this would be the case for your husband or not. It sounds to me like this doctor said "chemo" but really meant "targeted therapy." They work. 

#3: You will need to see an oncologist, first and foremost. If they do surgery, it will likely be a urologist. 

#4: IMMUNOTHERAPY- This may be an option. Some drugs are available, some promising ones are in clinical trials. Please ask about this (again, a second opinon is highly recommended. 

I hope this was helpful. 

sblairc said:

Welcome.

My husband was also 47 and was diagnosed in the ER with Stage 3 kidney cancer. Our then 8 year old daughter watched him suffer while I rushed him to the hospital. I hate this disease. HATE. So sorry you are here, but rest assured you will find support here. 

Some of my thoughts, real quick (since I've got to finish some paperwork, on a deadline, a teacher's work is NEVER done!!)

#1: I suggest a second opinion. I have heard of primary tumor removal at Stage 4 iniital diagnosis. It is worth a shot to get a second opinion. 

#2: The use of the word "chemo" is a mistake with kidney cancer but there ARE OTHER TREATMENTS for it that work to shrink tumors. They are equivalent, I suppose but many people misuse the word "chemo" to refer to "targeted therapy." Again, a second opinon with an oncologist well versed in this cancer is recommended if humanly possible. Sometimes tumors are shrunk with the drugs BEFORE surgery, but I am not sure if this would be the case for your husband or not. It sounds to me like this doctor said "chemo" but really meant "targeted therapy." They work. 

#3: You will need to see an oncologist, first and foremost. If they do surgery, it will likely be a urologist. 

#4: IMMUNOTHERAPY- This may be an option. Some drugs are available, some promising ones are in clinical trials. Please ask about this (again, a second opinon is highly recommended. 

I hope this was helpful. 

Sorry to hear of your husbands diagnosis. I too will advise you to get a second opinion.  I'm of the mindset if it's bad, get rid of it, if at all possible.

Barnes Jewish has a great reputation, and if Siteman is affiliated, get there. 

Best wishes. I will keep you both in my prayers, and that you will find competent doctors that you feel comfortable with. That's very important. 

Donna~

icemantoo said:

Second Opinion

Amyjoe,

 

Normally I would have suggested a second opinion as well. I did not because of the financial conditions you raised and the fact that you are going to the top hospital in your State and area. Being connected to a teaching hospital you will have the input in all likelihood of more than 1 doctor of each type on your husband's case. There is no single right answer which jumps out from how youhave described his case. There also may be more than 1 option presented to you with pros and cons for each. Sending good karma that the best decisions will be made. Although surgery to remove a kidney sounds scary, all of us went thru that. Mine was almost 14 years ago.

 

Icemantoo

Your head must be in a blender.  Why are they doing a biopsy on the primary tumor if it's already 13 cm?  I wanted that sucker out of me!

I can relate to the size 12.5x10.5x8 cm on the right kidney.  They removed the entire kidney, but left the adrenal.  Also took out the nodes directly behind the kidney with 2 of 11 positive for Clear Cell RCC, and left lobe of my liver that had a 5x6 cm mets.  I, too, had been vomiting bile periodically, and as an after thought at a regular check up, mentioned it to my new PC doctor.  He ordered labs anyway, and a uninalysis to check my blood sugar, and then an ultrasound.

Ignorance was bliss until the day of the US, when I received a late call that the Dr. would like to see me at 8:30 the following morning.  Whoa, Nellie.  You have haematuria (blood in the urine) which was faint enought that I hadn't noticed, and a mass in your kidney, annnnnnd one or two masses in your liver.

"Palliative care can be offered, but there is no cure for kidney cancer.  Surgery is considered palliative care.  The drugs that are available may be able to shrink the tumor, or boost your own immune system, but they are not considered traditional "Chemo.""

From there, I saw an oncologist, who was able to set up an appt. with a group of specialists at Oregon Health Sciences University (OHSU) in Portland, OR; had a CT, and a bone scan.  And waited, and cried for a few days.  I woke up a few days later and my mouth was dry, so I knew I was alive.  And thought why go thru what life I may have worrying about what could happen.  I had been given 5-7 months at the stage they felt I was clinically Dx'd at.

So for the next 5-6 weeks, I got my ducks in a row to be ready for a late June surgery, which removed the above named parts and pieces, and several questionable wedges from the right lobe of my liver that were biopsied then and there, a congenitally defective gall bladder and bile duct (which was causing the vomit problem), and kept me in the OR for 11.5 hours.

I had a urologic-oncologic surgical specialist, an abdominal-thoracic specialist (who is now head of their liver transplant team), and a medical oncologist who had reviewed all my original test results and worked with me.  When I saw the med-onc. after surgery, he said there was no trial or other drugs that I would be put on because "I didn't have an active site that could be monitored."  No one knew that year, that I had other nodes that had picked up errant cancer cells;  so I had single node removal surgeries one year following initial surgery, and again a year after that.

So I'm now getting ready for the 10 year celebration of my new birthday, and have been 7 years with NED-No Evidence of Disease.  Lots of false starts-thyroid nodules caught on CT-blood work-nuclear thyroid test-and biobsy for a final of Negative for mets or thyroid cancer.  The CT that found stomach polyps so my Dr. said lets do the double whammy- Endoscopy to remove the stomach polyps(2), and colonoscopy to check out the other end (3 removed). And lots of call backs on mammogram tests-again, Negative.  My PC and oncologists are much more vigilant about ordering follow up tests about anything questionable.

As a teacher, you can relate to starting a file, with test records, file notes, etc.  Begin Yesterday. Your husband and with his signature on a form or two, you are entitled to print out or digital copies of records.

Good Luck and Hugs to both of you,

donna_lee

I'm also stage 4 - mass on kidney and mets in lungs. My Urologist also did not reccomend removal of kidney due to progression into diaphragm - this means a rather complex op with long recovery. His opinion isthat why put yourself thru that when getting control of lung tumours is more critical. If we can do that then he said we can look at options with kidney. I agree. i dont see the sense of putting myself thru alot of unneccesary pain and disomfort if my lung mets prove unbeatable. Maybe the particulars of yr husbands kidney cancer create a similar scenario.

Its not all doom and gloom.There are some great treatments available to help yr husband. Best of luck.

Hd67xlch said:

If it was me Id want all the

If it was me Id want all the cancer cut out asap if possible, I had a 5.9cm kidney tumor and they took my kidney 5 years ago, then this year had 2 lung mets 2.3cm and 1.1 cm cut out, everything Ive read says the best way to cure kidney cancer is to get it cut out. Neither surgery was that bad, I returned to work this week 18 days after the lung surgery and I didnt get lucky and have the VATS I had the traditional surgery where they slice you open like a pig, but IMO it was worth it, my pathology report came back with negatice margins from the lung surgery. Of course all just my opinion not everyone is as gung ho as myself to get sliced open.

I too had a oncologist I had no faith in, I wont go back to him again, he seemed to think all kidney cancer could be treated with Sutent pills, which I had no interest in taking, if I was you Id talk to a urologist surgeon and have him send you to a pulmanary surgeon and see if they can cut it all out, all just my opinion.

Good luck

Amyjoe,

I agree with others that you definitely need a second opinion.  Because kidney cancer is uncommon (3% of all cancers), most medical oncologists don't have a lot of experience with it and aren't up on the latest treatments.  Just the fact that they did a biopsy is a sign that they probably don't know kidney cancer very well because a tumor that size is definitely cancer so there isn't much point in getting a biopsy.  The only cases I can think of where even an RCC expert would refuse doing surgery is if the patient was in very poor health and couldn't handle surgery or if the position of the tumor would make it too dangerous.  In those cases, I know they sometimes prescribe systemic treatment (targeted therapy) and try to shrink the tumor to the point it can be safely removed.  Another factor could be whether there are tumors in both kidneys.

I strongly recommend that you also join another website: SmartPatients.com.  There are many Stage IV patients there and probably some can recommend experts in your area and offer suggestions about treatment with your financial situation.  Please also still come to this site.  These people and great and will offer a lot of advice and support, but SP has over a 1,000 kidney cancer members and caregivers, many with advanced disease.

I know your head is spinning, but you can do this.

Kathy