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Kidney Removal

amyjoe23
Posts: 14
Joined: Apr 2016

My husband was diagnosed on April 18 with Stage IV renal cell carcinoma. He has a 13 cm tumor on his left kidney. It has spread to his lungs. It is "suspicious" about being in lymph nodes, but needs further testing. The oncologist we saw in our town, stated that he would not remove the kidney because they could only treat not cure the cancer. He also refuses to do a PET scan as he just wants to start him on Sutent, and states it will shrink any tumor. That really angered me. 

He is going to see Dr. Hiram Gay at Siteman Cancer Center in St. Louis next month. One of his specialties is kidney cancer. 

I have read that if the primary tumor is removed, it makes the 5 year survival rate triple. We should fight to have the tumor removed right? My husband would be really healthy if they removed the kidney tumor. He can't currently work because of the pain it causes. He is on oxycodone, but it doesn't take away the pain completely, and makes him so sleepy. I feel as though I am watching him waste away :( 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I'm with you, if it were me, or my husband, I'd want the damned thing removed.  Of course I'm not a doctor and don't know his full health history, but treating a tumor that's causing pain with oxycodone is like patting him on the head and telling him it'll all be okay.  Glad you're going for another opinion.  Can't wait to hear what the doctor at Siteman has to say.

Best wishes and I'll be praying for you guys,

Donna~

amyjoe23
Posts: 14
Joined: Apr 2016

Thanks so much, I will keep you updated :)

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

I'm sorry you had to join,I'm sure you're having tough  time

Nephrectomy(removing kidney with/without adrenal gland) is first treatment option urologist do for a kidney cancer patient. So it's best to see a well experienced urologist, nephrectomy is first and most important treatment in for some patients with other health issues they might not be able to do it. I'm not sure what reason makes them to make this decision but sometimes the kidney needs to be ambolised and then removed. By the way it's not oncologist's experties. It's something you should talk with a urologist, after removing kidney they refer you to oncologist for further treatment. Nefrectomy takes tumor out of patient's body so they can send it to pathology department and make sure what subtype and grade it is.  This information helps a oncologist to choose best drugs and to arrange a suitable follow up program. Having C.T with and without contrast is best tool to recognize what's happening in abdomen,pelvic,lungs and whole body scan is good for recognizing possible Mets in patient's skeleton. Brain MRI is also their tool for bain Mets. Having these tests for a stage four patient is a must-do in my opinion

amyjoe23
Posts: 14
Joined: Apr 2016

We had our initial diagnosis in the ER, so we are going at this backwards I think. My husband was referred to an oncologist first. His primary care doctor referred us to a different onoclogist in St. Louis. Would a urologist see him without a referral? The tumor is what is affecting my husband right now. He would be ok (for the time being) without it. He's lost 40 pounds almost, but he needed to lose it anyway. We feel we can work with the lung lesions. I hadn't thought about it having spread anywhere else really. That freaks me out more. 

He's only 47. This isn't supposed to be happening :(

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

treating the tumor to shrink it, is appropriate prior to future removal. Can be a vey good move. But my impression is that the doc has decided your husband is not going to be a long time survivor. So it's a case of "Let's wait and see." I't's no skin off his butt. He will be happy to monitor your husbands demise because as everyone knows, he's gonna die anyway.

Now are you sure you want to stay under his care? There are way to many of us who are still here 5 years after being told we had 6 months to live. Those of us still here have ALL sought out specialists. I went to 4 cancer centers who stated they could not help me before the 5th saved my life. You are in charge. What is your goal? It remains inconcievable to so many that our first experience with kidney cancer comes with doctors who still have'nt learned that this is NOT a death sentence.

amyjoe23
Posts: 14
Joined: Apr 2016

Is exactly what we have done. We went to a local oncologist, now we are headed to Barnes Jewish Hospital (Siteman Cancer Center) next month. They have done miraculous things with cancer patients. We will keep going to doctors until we find the right one. Giving up is not an option. We have super young kids. Our goal is to have dad there until they at least graduate (hopefully longer).  We were really worried with the initial diagnosis. But now that I'm reading where many of you have lived 5+ years, it really eases our burden a bit.

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

I was 36 when they gave me bad news, I remember every minute of those days, your husband is young,  we don't expect to hear such news unless we're old but lwhat can we do? fighting it is all we can do, and winning the fight is our reward.

I don't live in US but I'm sure he should see a urologist, urologist is the one who can tell you if nephrectomy should be done or not not a oncologist

amyjoe23
Posts: 14
Joined: Apr 2016

Can someone explain this better to me? My husband's Fuhrman grade was 2-3.

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

How do you know that? Did they biopsy his kidney? The Furman grade is between 1and 4. It shows how different the cancerous cells are frm normal kidney cells. Grade 1 and 2 are considered as low grades and grade 3 and 4 are considered to be more aggressive. An aggressive tumor needs to be more carefully followed up as the grade is one of the main factors to pridicate the possibility of future recurence or distant Mets.  His grade is 2-3 means some cell are grade two and some others are grade three.

amyjoe23
Posts: 14
Joined: Apr 2016

He had a biopsy done on April 25th. We didn't understand why they biopsied as opposed to removal. This is why we are trying to switch doctors. 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

You need to see an oncologist that specialises in RCC. They will know what to do. They treat/manage Stage IV cancer. RCC is too specialised to see a generalized oncologist unless they can get a consult with an RCC specialist.

Look for nearby university medical schools, or the way I found mine was to go on the national database for drug studies and search for RCC drug studies. They list a contact number in all the different areas of the US for each drug study. Call that contact. They are usually a doctor that does research in RCC (or at least they can recommend someone). Call them.

Unless your insurance requires it, you do not need a consult. In fact, most oncologists and urologists with this kind of a problem will see you in a few short days notice if you call them and explain the situation. You shouldn't have to wait weeks or months.

If you decide to see a urologist, try and see a urologic oncologist. This is a surgeon who specialises in kidney masses.

Without a full pathology on the tumor, they can't tell you for sure the Furhman grade. Tumors are not necessarily homogenous.

An RCC oncologist is probably going to do a CT with/without contrast of chest/abdomen and pelvis. They need this to get a good baseline on your husbands disease (number of tumors, size, what organs are involved). There are several medications available right now to treat RCC besides Sutent. They all don't work the same. They will need the scan to evaluate if the drug is working and to decide whether or not to switch to another drug.

In short, you really need to see an oncologist that specialises in RCC. If you have trouble finding someone, you can post a question here and tell the area you live in and someone might recommend someone to you.

I'm not familiar with the doctor or cancer center you mentioned.

Best wishes,

Todd

P.S. There may be some research that suggests that reducing the tumor load is helpful for the body to fight the remaining cancer. There may be some other research that suggests removing the primary slows down the growth of the other tumors. Please ask an RCC oncologist. I heard this stuff, but I don't know how accurate it is.

mrou50
Posts: 389
Joined: Mar 2013

I am like everyone else here it sounds to me that the tumor should be removed to alleviate pain, but maybe the doc has another reason for not doing that but at least he/she should explain why and it better be for a good reason.

 

Mark

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