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New caregiver with lots of questions

hillbillygal
Posts: 4
Joined: Oct 2013

Hello all,

So glad to have found this resource.  DH was diagnosed about one month ago and had his left kiidney removed.  It's RCC clear cell.  The tumor size was 9 cm and had the tumor thrombosis, although it had not turned into the vena cava yet.  It was stage 3a with a Furhman Grade 4.  He is only 49 and had no risk factors or symptoms.  In fact, he had a CT scan of his kidneys about two years ago as part of another set of testing and nothing showed up then.  He just went to the hospital with blood in his urine (thinking kidney stone)  and about four hours later, we heard the news that it was cancer.

After having the misfortune of having consultations with the "general urologists" on call at the local hospital (who need to attend remedial Bedside Manner courses), we were able to get in with a urollgic specialist who did the surgery at a teaching/research hospital.  

I am wondering in how much detail did you doc go over your pathology reports with you? At our follow up visit, he told us that the margins were clear and the lymph nodes were clear.  No sign of spread.  He is not referring us on to an oncologist at this point and the next scan will be in four months and then every six months.  We left the office feeling pretty good. Unfortunately,  we had doubt cast on our positive feelings by the nurse case manager and another doctor (not a specialist) who is retained by my husband's employer to assist him in getting back to work.  Both of them expressed "concerns" and were surprised that the surgeon didn't go over our pathology report in more detail with us.  Of course, it's filled with scary medical terminology that we are not qualified to interpret.

So, I've scheduled a follow up appointment with our surgeon but can't get in for another week.  We also decided to go ahead and seek the opinion of an urologic oncologist.  

What other questions should we be asking?  What other resources should we be seeking?

 

Thank you!

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

Hillbilly Gal.  I am about to depart for the airport and will out of internet access this weekend.  So I only have a second to write.  If what you say is true - that is an unbelievably fast growth of his tumor (9cm in only two years).  As such, I would want to know why it is so aggressive.  Is there any evidence of sarcomatoid cells?  If so, what percentage?

I am sorry will not be able to follow up on hearing your response until next week.

hillbillygal
Posts: 4
Joined: Oct 2013

Yes, NanoSecond, I am afraid that this quick growth is true.  I wonder if the docs will even be able to tell us why it was so aggressive.  

I believe (if I am understanding the path report correctly) that there were no other types of cells other than clear cells.

My husband wants to take the 2011 CT scan to another radiologist for a re-reading just to confirm that there was nothing seen in the kidneys then.  I am not sure that it makes a difference at this point.  

Please keep the other questions that we should be asking coming.  We are getting a crash course now in urology and oncology.

Thank you!

 

 

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Like Neil, I was a bit shocked to hear what you wrote.  My first "guess" is that somehow it got missed on that first scan, as that kind of growth is not typical of Clear Cell.   But, if not, then I would suggest you get to a good no a great Onc ASAP.   You did not mention where you are, or how far you are willing to travel. as there are people here that may be able to give you a recommendation.  Keep us posted.

OK, I see you replied while I was still typing.  YES, take that 2011 scan for review... Hopefully it was missed.  Although that too would be very sad, as two years may (MAY) of made a difference.  We normally think of clear cell growing at less than 1 cm per year.  But if not, then you likely need a sooner follow up than 4 months.. more like 3 months at first.

Ron

hillbillygal
Posts: 4
Joined: Oct 2013

We are in Texas.  Of course we know of MD Anderson, but are there specific oncologists recommended?  Do we see a general medical oncologist or a urologic oncologist?

Should we go on to MAYO or somewhere else for another opinion as well?  We have heard of the Cleveland Clinic for urology, but not sure if that includes urologic oncology.

It was our understanding that there is no great treatment for RCC.  Are we looking at just waiting for the mets to appear?  As I said, we didn't get much information from the surgeon about the prognosis.   

 

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Sounds like you are way ahead of the average newbie. There is a post on smart patients.com with a oncologist list. Yes a urolo oncologist is usually the best. There are no known preventing drugs. But some good drugs IF Mets

show up later. This is another reason why follow up is important.

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Another thing try to stay calm and not panic. Look at your diet. Reduce salt and sugar and red meat. Lots of water, then more water.

Stros2013's picture
Stros2013
Posts: 31
Joined: Aug 2012

I've been seeing Dr. Christopher Wood at MD Anderson.  He performed full neph last year.  He is Patient and excellent in working for my wife and I to understand options.  Would highly recommend.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Hillbillygal -

Did they use contrast on the 2011 CT? When my tumor showed up in 2011 in a CT WITH contrast, the radiologist was able to look back at a CT WITHOUT contrast from 2008 and JUST make it out, now that he knew what to look for. But it surely did not stand out without the contrast.

Kidney cancer is usually slow growing - so I share other's concern about the potential speed of growth. I was only 42 when I was diagnosed. Although my tumor was under 3 cm and totally contained, my husband and I had decided to see an RCC oncologist. My urologist doesn't refer all of his patients, but he'd also come to the same conclusion. As he put it - he's a plumber, now I needed an electrician. Specifically because of my young age, in his opinion.

So, lots of people DO have their follow-up care managed very well by their urologist/surgeon. But I would definitely encourage you and your **young** husband to connect with an oncologist.

As far as the nurse case manager and other doctor are concerned - keep in mind they may not have much experience with kidney cancer - it is somewhat uncommon. And a lot of the usual 'cancer rules' don't apply. For example, we're at the point with breast cancer where pathology can tell the doctor all kinds of things about what 'feeds' the tumor, treatment strategy, etc. We just don't have that much info for kidney cancer (although new things are coming along.) For many of us, we have surgery and then get monitored. That might be a lot different than other cancer patients they are talking to...

srbelle1
Posts: 123
Joined: Jul 2013

I too am a reasonably new caregiver to my husband who was diagnosed on 7/2 with a stage IV kidney cancer, mets to the spine.

my way of coping is to read and research as much as I can, then discussions with the docs. We have good specialists but pushing for information is my responsibility. My husband is happy to have this task. 

Your husband has a grade 4 which is a way of describing aggression or how fast it develops and spreads; I am surprised that no further treatment was recommended. Go on the cancer institute site; since you are in Texas, go to the MD Anderson site and you will find the options, treatments, trials being conducted on kidney cancer patients with your husband's histology.

my husband's tumor was 10cm, grade 2; we already know it has left the kidney so today I discussed it with Mayo oncology who explained how very small and yes, almost invisible those pesky cells can be and yet they are spreading. So far, recommendation is watch and wait, scans every 3 months or maybe a biologic therapy. Many options ans choices await us but I was told that the cells (if there) are slow-growing. Your husband is grade 4 so it is aggressive.

get to a specialist, push and shove for answers.

given the vast expertise on this board, I feel a bit intimidated but it is simply what I have learned since his diagnosis.

stay in contact; there are some really tried and true opinions learned from the school of hard knocks.

 

Ladylacy
Posts: 471
Joined: Apr 2012

Four years ago our son at age 40 had one of his kidneys removed due to RCC cancer.  It was contained in the kidney and he had no further treatment.  He has had his follow ups with the specialist and he has been NED every time.  He had had trouble with kidney stones and had plenty of CTs with contrast and nothing other than the kidney stones showed up.  Then when on vacation he had a horrible attack and went to the ER.  After a CT scan, they told him there were stones but also something else showing up and he needed to see a specialist as soon as he got home.

Now he had had a CT scan about a year prior to that and nothing showed up.  The specialist compared his scans and said that first they had to get rid of the stones and then he would need surgery.  He had no problems with the surgery and has had none since.  

The only suggestion would be see a specialist who has experience with this type of cancer.  We found out that was the best when my husband was diagnosed with cancer.  Many general surgeons and doctors, don't know everything there is to know about cancer.  A specialist is the way to go and if you don't like the specialist find another one.  After all you have to be comfortable with your doctors.  Our doctors explained everything to us and everything in the reports from the PET scans and CT scans.  Ask questions, make notes.  Research but don't take all research as the gospel or others comments.  Remember we are all different and no two will have the same results from treatment.

 

 

hillbillygal
Posts: 4
Joined: Oct 2013

Thank you for taking time to reply.  It has been very helpful in our preparation to see the oncologist.  

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