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

amyjoe23

This is my first post, and it's going to be long. I apologize.

My husband started feeling bad right before Christmas. We originally thought that his back ache was because of our new memory foam mattress topper. He also started throwing up bile, and was sick at his stomach alot. He lost about 20 pounds the first month of feeling ill. He has lost 30 total. He's 47.

Fast forward to last Wednesday (week before yesterday). He finally went to the doctor. She pressed around on his abdomen, did some blood work, a urinalysis. He got the results last Friday that everything was clear and they wanted to do a fecal test. I thought he had colon cancer, or a spastic colon of some sort. He had to miss work last Thursday, because his back pain and side was hurting so bad. He finally had me take him to the ER this past Saturday. They did a cat scan, chest XRAY, more blood work, etc. We literally go the results of the CT scan in 30 minutes. 13 cm mass on his left Kidney, with lesions on his lungs. They set us up with an appointment with an oncologist. We saw him the day before yesterday. He gave us the diagnosis Stage 4 kidney cancer, which has spread to the lungs. He has 5 lesions on his lungs (unsure if one or both---crazy day forgot to ask). The biggest on the lungs is 5 cm. It has NOT spread to the lymph nodes. He still is waiting on biopsy to see what kind of kidney cancer it is.

I'm going to be honest, I don't like the oncologist we saw. He said we could treat, not cure. I can understand that. The mass is pushng into my husband's colon, causing him sever pain. He would NOT discuss removing tumor, as we can only treat not cure. He was speakng of shrinking the tumor with chemo. My understanding is the place we went to is a chemo mill(?). I have been reading as well, and it indicated that kidney cancer doesn't respond well to regular chemo or radiation.

We don't have insurance. We have applied for him to receive disability and medicaid. Since last Tuesday he's worked about 13 hours. I'm trying to get him into the Siteman Cancer Center in St. Louis. I have heard they are one of the best facilities in the US.

Can someone tell me if this is normal to NOT remove the primary tumor? What I've read is you have a bigger chance of surviving 5 years if the primary tumor is removed.

Has anyone known anyone that has went to the Siteman Cancer Center in St. Louis? Do we need a urologist or an oncologist or both?

Has anyone been approved for Medicaid, how long did that take? We are still waiting for approval for him to have a  biopsy.

Any advice would be helpful.

I have lots of questions. I'm going to be writing them down and will ask as I go along. Thanks so much.

icemantoo

You are at the right place

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

amyjoe23

icemantoo said:

You are at the right place

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

We aren't there yet.

We haven't went to the Siteman Cancer Center yet. We have been going to Cox in Branson, MO. They have a hospital in Springfield as well. I'm pushing for the referral to Siteman. Hopefully we get that Tuesday, and can get seen in St. Louis within 2 from now.

I'm going to be his strongest and best advocate

sblairc

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. 

hardo718

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. 

Welcome Amyjoe

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~

hardo718

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. 

Welcome Amyjoe

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

hardo718 said:

Welcome Amyjoe

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~

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

donna_lee

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

All sorts of advice.

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

 

 

angec

I think you should go

I think you should go somewhere else. See if you can get him into the hospital you mentioned. Doctors have all different ways to do things, but honestly, with the tumor that size and mets and the fact that your husband is in pain.  The doc should not be waiting on a biopsy when he has to remover the kidney anyway. Given a choice, i would just have the kidney removed at an experienced Cancer facility.  I know you don't have insurance but you still have to be treated somewhere. You heard it is a chemo mill? Run the other way!  Chemo, if they mean in the veins, is not used to treat kidney cancer, it does not respond. Targeted therapy, made for kidney cancer, is another thing.  Please get a second opinion, pronto.  Once the surgery is done, there are plenty of options to treat the mets in the lungs and to keep him stable. This is a scary time, but you found the right place.  Please continue to post with any questions.  Try to get him somewhere else.  Praying all works out nicely for you.  Take one day at a time and breath!  Get a copy of all test results and make a folder for yourself.  You can also join smartpatients.com and get more info there.  Hugs!

grafer

I'm also stage 4 - mass on

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

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

NewDay

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

Tumor removal and next steps

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

mrou50

Amyjoe

If you don't like your Oncologist I would seek out another in answer to your question about ONC and Urinary doctor I have both an Oncologist, and a Nephrologist they work as a team on me and do a great job, I would suggest both.  Don't give up the search for a doctor that makes you feel comfortable, but given your husband's issues don't be suprised if most of the doctors say something similar.  I am surprised they did not remove the kidney with the big tumor, they took mine right away with in hours of arriving at the hospital, now my cancer is in my lungs, throat, and lymph nodes but my doctor keeps attacking in head on.  Hang in there and hold on the ride gets bumpy sometimes.

Mark

amyjoe23

donna_lee said:

All sorts of advice.

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

 

 

Donna Lee--questions

Donna Lee, his primary care doctor told us that the reason they wouldn't remove the kidney and tumor is that it may be on the artery. We are going to get our referral to Barnes-Jewish hospital, so maybe they will be ablt to remove it. He has only had the original abdominal ct scan, xray, and biopsy. We go see his oncologist tomorrow to get the results of his biopsy.

I want them to remove the tumor if possible, because he can't function with it. He's now on oxycodone for pain

I have the notebook, his medical records prior to Monday (will get Monday and tomorrows after we are done with the oncologist).

I feel I'm going to be a cancer expert after this.

Footstomper

amyjoe23 said:

Donna Lee--questions

Donna Lee, his primary care doctor told us that the reason they wouldn't remove the kidney and tumor is that it may be on the artery. We are going to get our referral to Barnes-Jewish hospital, so maybe they will be ablt to remove it. He has only had the original abdominal ct scan, xray, and biopsy. We go see his oncologist tomorrow to get the results of his biopsy.

I want them to remove the tumor if possible, because he can't function with it. He's now on oxycodone for pain

I have the notebook, his medical records prior to Monday (will get Monday and tomorrows after we are done with the oncologist).

I feel I'm going to be a cancer expert after this.

Lucky

The Urologist looked at my scans and immediately said it was too complicated for him and referred me to a Uroligist and Oncologist in Baltimore. Ive always been grateful for his professional self awareness. I would have thought the tumour being on a blood vessel was a reason to proceed not a reason to delay