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Lurker with questions

SandyMM
Posts: 3
Joined: Feb 2013

I have been lurking for many months, want to introduce and ask questions. I was diagnosed with Sarcoidosis (autoimmune) in 2002 in lungs, lymph nodes, skin and suspected in heart and kidney. Sarcoidosis causes granulomas (nodules). This has complicated every single aspect of my health. When I do not feel good it is blamed on the Sarcoidosis. I was not feeling well for much of 2011. Finally the doctor decided to order a CT scan for “possible diverticulitis” in February 2012. Kidney cancer found. DaVinci Robotic partial nephrectomy April 20, 2012. Pathology: T1aNX, Fuhrman grade 2, size 4cm, Clear Cell. I am now in stage 3 Chronic kidney failure. Complications from surgery: Nerve damage to C-5, 6: I could not lift my left arm more than 2 inches (tied down for 4 ½ hours in a bad position). Took months of therapy to get mobility in arm back. Worse complication was very poor nursing staff at the hospital. They treated me extremely poorly, I think they decided I was a whiner and a wimp because I was having so much difficulty getting out of the bed (the bed with the deep well where your butt gets stuck). I was unable to use my left arm, so had to use my right arm: the side of the surgery and it was very difficult to get out of the bed. I repeatedly requested a reclining chair and was denied repeatedly. The chair by bedside was very uncomfortable, but I knew I would be able to get out of a reclining chair better than the bed with the butt well. Bad nurses, bad hospital experience. The nurses never even told the Doctor about my arm until the day 5  when I had a friend(RN) visit and she pushed me to tell the doctor when he visited. I always thought nurses charted everything, but apparently not. Boy was the doctor mad! The next complication was because I was having to pull myself out of the bed with my right arm only: hernia at the port site. My colon was playing peek-a-boo with the world. That surgery was in August. More pain.

CT scans have shown a “nodule” on left adrenal gland, multiple cysts on both kidneys, a 4mm and a 9mm “nodule” in lungs, nodules on thyroid, small bowel lipoma. Multiple lymph nodes are large. I had the thyroid diagnosed with fine needle aspiration: benign but big. One lung with bigger lymph nodes had bronchoscopy with biopsy and it was sarcoid.

My last CT scan was in October, my lymph nodes had all enlarged dramatically in lungs, around kidney, liver and multiple locations and the urologist said it looked like lymphoma. After walking around a week in shock I started seeing the pulmonologist and he did the bronchoscopy with biopsy. Diagnosis: Sarcoid, at least on the node he sampled. I feel like a walking time bomb.

I have so many questions. But will offer only a few today. I tried again this last week to see where my pain levels are without meds. I made 3 days without the oxycodone but am just too sore and achey. My right side and right flank side still hurt. I am unable to wait longer than 5-6 hours to pee due to the pain. I rarely sleep more than 5 or 6 hours because I have to get up to use the bathroom and rarely go back to sleep. How long???

Next question: should I find an oncologist to add to my “ologist” list of providers (urologist, pulmonologist, nephrologist, neurologist)? I have not been offered an oncologist by my pcp or any of the other docs. T1aNX Fuhrman 2 is considered ok? My GFR has been as low as 38, but currently is 47(will have lab results from newest blood draw next week). I cannot find a RCC specialist near me: Eugene Oregon. Do I need another doc? I am so tired of doctors. I am scheduled for a CT scan on Thursday next week. The original order was for abdomen and pelvis only. I had to work hard to get the chest added in as I am not comfortable going 7 months without a CT on the nodes and nodules being watched. (had an x-ray in January) Had to go over one doc's head to another’s to get it added in. I still have not had a PET scan or MRI. Is it routine to check for problems or do they only check when obvious problems are found?

I am working hard at being my own advocate, but seem to be swimming against the tide. I know that others around me are ready for this chapter of my life to be ‘quiet’. I am trying to be quiet about my needs or fears, but feel I am losing the battle. I do not plan on going down because I was not vigilante. Comments? Sandy

NanoSecond's picture
NanoSecond
Posts: 583
Joined: Oct 2012

Hi Sandy,

Wow. I am so sorry to read about all you have been through.

I don't have much time right now but I want to offer two suggestions.

The first one you don't want to hear.  You absolutely should find an oncologist - and one who specializes in renal cancer. The sooner the better.

Second one - if you are not already a member, please consider also joining the ACOR KIDNEY_ONC website.  There is an incredible breath and depth of expertise available over there.  You should take full advantage of it.

To join, go here:

listserv.acor.org/archives/kidney-onc.html

On the right side of the page, click on: "Subscribe / Unsub / Options."

On the next page, enter your name and email address. Click the box at the bottom of the page to join the list.

You will then receive an onscreen notification that a confirmation request has been sent to your email address.

You have to reply to that confirmation request before the process is complete.

 

 

Hang in there.  I am sure you are going to get some great advice here - and there.

Best wishes,

 

-NanoSecond (Neil)

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes - do find a renal oncologist.  Stay on top of your doctors and ask all you feel you need to.  The nursing care you've received sounds disgraceful.  Is it a smallish local hospital?  It may be that you need to switch to a more appropriate hospital if that's possible for you.  The medics are professional and should behave appropriately and always remember: it's their living but it's your life!

icemantoo's picture
icemantoo
Posts: 1619
Joined: Jan 2010

Sandy,

 

I know you have gone thru a lot, but your choice of words on one of your diagnosis is more attitude than substance.

A GFR of 47 is Stage 3 of Chronic Kidney Disease not Chronic Kidney Failure. Mine is 45 and with 1 Kidney and age 69 my Nephrologost suggests is near normal inder the circumstances. Very few of the club members have readings over 60 which means we are Stage 3 of CKD not CKF. It is bad enough that our near normal mild kedney function loss is called Stage 3 CKD. Lets not go overboard and call it Stage 3 Chronic Kidney Failure.

 

Icemantoo

SandyMM
Posts: 3
Joined: Feb 2013

Good Point Icemantoo!  My attitude is showing, it IS Chronic Kidney Disease.  I suppose I am preparing for possible kidney failure...!  Hopefully it will not come to that point.  I am slowly integrating the renal diet into my life, and that of my family.  Trying to change my attitude.  At age almost 60 I did not expect to be in this club at all.  I am married with one special needs son, age 18.  We live with my 87 year old mother, who needs help due to health concerns of her own.  My husband is type 2 diabetic.  Lots going on in  this old house.  I do not know what would be considered normal GFR with 1.5 kidneys.  I went from >60 GFR to 37 GFR after surgery.  My left kidney does not function properly according to a 'nuclear' test run in 2001 prior to  hysterectomy.  That is when they spotted something on my left kidney the first time, decided it was just a cyst and said most people live with cysts and do not even know it.   Cancer was on the right!  So, I am functioning with over a whole kidney between the two.  Better than some.  Does having cysts on both kidneys make it poly cystic kidney disease?  Doc's have not given me that moniker yet.  I don't even know if the cysts would be considered sarcoidosis or something else. When I had my hysterectomy the doc said the walls of my uterus were lined with cysts.  Probably why I had so much trouble getting pregnant and not miscarrying, had 4 miscarriages before keeping the one to deliver at age 42.  

I think I am leaning towards finding an oncologist after this scan if the nodes and nodules are increasing in size.  The pulmonologist put me on prednisone for 6 months, I am in my 4th month of prednisone.  I avoided the cursed drug for over 10 years, but had to breathe this time.  He said he would start weaning me if the scan is positive in direction for the nodes.   I am going to find the Acetyl Cysteine to take before my scan this time. Have not used it before.  I did listen to the "chatter" on the phone while waiting to talk to someone in the scheduling department for the CT scan next week and they  said they use 70% less radiation at their facility, so maybe they use the low ion stuff in the drink and IV?  Do I still need the Acetyl Cysteine?  I am taking 1 1/2 liters to drink at work in the 2 hours before check in for the test on Thursday, so should be properly hydrated before drinking the icky stuff.  I have never been offered IV hydration, do not know if it is needed for me yet. 

Are there any RCC specialist in the Eugene Oregon area?

Thanks, Sandy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sandy, on the last point, unless Robin Martinez (a valued but occasional visitor  comes to the rescue here)  do take Neil's suggestion of joining KIDNEY_ONC where she in particular and others, who may be in your part of the world, will surely come up with names and may well have helpful advice on some of your other issues.

SandyMM
Posts: 3
Joined: Feb 2013

I have been lurking at ACOR almost as long as here.  I will post over there.  Have never posted there.  I think I had to join to read on the site.  Guess I need to be more pro-active now.  Thanks, sandy

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