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New plan

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

BLKJAK and I have talked and come up with a new plan for this "educated guess" of collecting duct carcinoma. Tomorrow I will be calling the oncologist and the case manager from our insurance company and requesting to have Mayo Clinic covered as "in plan." Then I will be contacting them and asking that they either take their own look at the biopsy sample or do their own biopsy and see if they can come up with a clearer idea of what specific kind of kidney cancer we are dealing with. We are both uncomfortable with the unclear pathology. He is supposed to meet with his local oncologist on Tuesday and start chemo possilby Friday. I would like to continue with the plan whilel waiting for the information, as doing nothing scares me. However, BLKJAK wants to wait until we have the information. So I will be pulling out all of my assertiveness and seeing what I can do and how fast we can get this to happen. Thanks so much to all of you for the support. It means so much to us!

GSRon's picture
GSRon
Posts: 1225
Joined: Jan 2013

Sounds like a reasonable plan.. One thing for sure... you will be fighting..!  Good Luck..!

Ron

srbelle1
Posts: 123
Joined: Jul 2013

cannot get better than the Mayo Clinic; i had set up appointments for my husband there when he was first diagnosed and sent them the MRI.

the first question was "where is the rest?" And then told that if that was all we had, then it was insufficient to reach conclusions.

since my husband was in a rush to have the spinal met operated on before it compressed, we didn't follow through and are now at UCSF.

if anything else is recommended, we will seek Mayo for a second opinion.

they are at the forefront of kidney cancer. Good luck in getting this set up.

sarah

angec's picture
angec
Posts: 621
Joined: Mar 2012

I think that is a good plan! It wouldn't hurt to wait a week or two before you start chemo, while getting a more definite answer as to what it is your dealing with.  I am glad that the shock is over and now you are moving straight ahead!  Go get 'em.  Praying that all works out for you! I love your assertiveness! ;)

BLKJAK
Posts: 108
Joined: Apr 2013

Good morning folks. I was in the ER last night for about 5+ hours. I had been feeling very poorly all weekend. I thought I had a cold but I was experiencing additional kidney pain. Being the intelligent man that I am, I decided to not do anything about it and went to work yesterday feeling cruddy. I got home and immediately hit the recliner and was shivering. My wife, the smart one, took my temperature. I had a temp of 100.5. She called the on-call oncologist and he said I needed to go to the ER to get things checked out. My temp there was 100.9. They did several tests including a urine and blood sample and an ultrasound to rule out blockages from the kidney and lymph nodes pressing on things. Long story short, they found bacteria in my blood so I had some sort of infection. They gave me some strong IV antibiotics as well as some morphine. I also have a prescription for some heavy duty antibiotics to take for 7 days. Now to the meat of my rambling post - I've had the chills and kidney pain for months. Is it possible that this infection affected my last CT scan? That was the scan which showed 1mm growth of lymph nodes and the tumor. Is it possible the Votrient was keeping the infection somewhat under control and now that I'm off of it the infection came to a head?

I'm trying to make sense out of the last two weeks. I don't like that the oncology team at UW-Madison is basically taking an educated guess at what's happening in my body. As mrs_blkjak said, we are trying to get a second opinion at Mayo. I just can't help but wonder if the infection was causing the 1mm growth because things were irritated and perhaps irritated for months.

I feel pretty good darn good this morning compared to the last 3 days or so.

BLKJAK

NanoSecond's picture
NanoSecond
Posts: 527
Joined: Oct 2012

YES.  Your lymph nodes most definitely can become enlarged if they are engaged in fighting any infections.  In fact, it was because of this that I indirectly found my bone lesion(s)...

After my radical left nephrectomy in May 2010 I was deemed "cancer-free" (NvED), since my tumor was fully encapsulated in the kidney and there was no visible sign of spread.  I then underwent the routine CT-Scans every 3-4 months after that.  For the first year - I was NED.  For the second year - I was still NED.  It was at that point that my oncologist suggested that we could stretch out the period between scans to every 6 months.  However, I suggested that we do one more in 3 months "just in case".  Still, that CT-scan also showed that I was still NED.  However, it also showed that I had some enlarged lymph nodes in an area around my intestines.

When my oncologist and I reviewed the results of that CT-scan I then mentioned to him that I had contracted one of those 24-hour stomach viruses the day after I had gone in for the CT-scan.  "Aha", says he.  "You were probably already fighting the virus before you had any noticeable symptoms.  That is most likely why those lymph nodes were slightly enlarged.  So, just to make sure, we'll do another CT-scan in 3 months."

And so we did.  Guess what, he was right.  My lymph nodes were back to being perfectly normal sized.  However, there was also "this area at the base of your spine that looks a bit suspicious..."  That turned out to be a bone met on my sacrum. So after 2+ years I had just graduated to Stage IV.

srbelle1
Posts: 123
Joined: Jul 2013

Neil:

has surgical removal of your spine met been ruled out? My husband was diagnosed with mets to two spots on spine and had surgery for the lumbar with cyber knife to the smaller one.

because the original diagnosis had the met, they did spinal surgery before the nephrectomy. His was the right kidney and tumor was 10 cm with a grade 2. So it is stage 4, grade 2 which seems strange but we'll take it.

Sarah

NanoSecond's picture
NanoSecond
Posts: 527
Joined: Oct 2012

Hi Sarah,

That is an interesting question.  Neither my bone cancer specialist nor my oncologist have ever suggested it is at all necessary.  The plan right now is to watch and wait since my lesions are all very small and not in areas that threaten the strength of the bone.  Also, they are all either shrinking, stable, or only displaying new bone growth.  So as long as Sutent + Xgeva keeps them in check we are in no rush to start poking around the spine - or subjecting it to radiation for that matter.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Sounds perfectly reasonable to me. Think postponing chemo makes sense at this juncture at least until you have another scan or have the benefit of Mayo's opinion. 

 

angec's picture
angec
Posts: 621
Joined: Mar 2012

BlkJak.... yes it most defiinitely can be why your nodes all grew 1mm. I don't know if you recall but that ws the first thing i asked you, if you had an infection. So, this clarifies even more why you should have the infection cleared and then perhaps another scan before changing any medicines. If it is infection then the votrient is working!  A second opinion is definitely high priority right now. I wouldn't take any chemo, you need to rescan after the infection clears first, that would be a smart move. What is the doctor saying? Did you call and let them know it is infection and mention the nodes might be inflammed I can imagine what would be right now had you taken the chemo with this infection.  I hope it clears up fast and you can rescan.  Hopefully you will just restart the votrient. This sheds a whole new light on it all!  Just my opinion, and gut instinct!  Feel better!!

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I've made lots of phone calls this week, and got the approval to get Mayo covered in plan and UW has been contacted to send the biopsy sample. I will call tomorrow to make sure they did this, as I don't trust anyone until I know it's done! So hopefully we will have a second opinion by next week some time. 

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