No Longer in Limbo

Abunai

I've hijacked a few threads of other people in the past couple of weeks since I've joined the site.

Finally got to talk to a medical oncologist today and have a path forward, so I'll start my own thread with my own story.

My left kidney tumor was discovered, by ultrasound, on Sept. 1st. It measured 14cm. It wasn't until Sept. 22nd that I finally had the radical neprectomy. Prior to and following that surgery, I noticed and reported to my Docs the fact that my gait was becoming steadily worse. Nobody seemed too concerned about that, thinking it was related to nerves or stress or the surgery.

Pathology was stage 4 grade 4 clear cell Renal Cell Carcinoma.

After being released from the hospital from the nephrecotomy, I lost function in my legs and had to be re-admitted to the hospital. Several MRIs showed several mets, including one on my T6/T7 spine region compressing my spinal cord. Many of the mets actually were present in the CT scan that led to my nephrectomy, but for some reason were not caught by my urologist or the CT tech.

I had the spinal tumor "debulked" on Oct. 1st with surgery, followed by 10 sessions of radiation therapy.

As I said, I finally sat down with my medical oncologist today, and as soon as my insurance company approves it, I'll start taking votrient for the cancer and another IV drug, zometa, to strengthen my bones, where all of my mets are, so I don't have a fracture that would force me to stop the votriant until the fracture heals.

I'm looking forward to starting to fight this thing. I'd love to hear from others on the forum with a similar diagnosis and similar treatments to let me know what to expect, what to look out for, questions I should ask my doctors, etc.

I'll stop rambling now I hope to be on here for many years, getting to know you all.

 

Dave

(Abunai)

 

lobbyist0724

Wish you a very good response from your treatment

I am shocked that both the technician and the doctor missed the met... I recalled reading phredwife's "about me" section, her husband has a stage 4, grade 4 tumor as well. Hope that can give you some insight. Please search her user profile.

I hope your pain is getting better and a very good response from your treatment.

Carmen

Abunai

lobbyist0724 said:

Wish you a very good response from your treatment

I am shocked that both the technician and the doctor missed the met... I recalled reading phredwife's "about me" section, her husband has a stage 4, grade 4 tumor as well. Hope that can give you some insight. Please search her user profile.

I hope your pain is getting better and a very good response from your treatment.

Carmen

Thanks, lobbyist. I'll search

Thanks, lobbyist. I'll search phredwife's profile.

JoanneNH

Wow!   Scans are not read by

Wow!   Scans are not read by techs.  They are read by radiologists.   If I were you, I would be considering changing the medical facility.  That is medical incompetence.

APny

Totally shocking that a

Totally shocking that a radiologist would miss those spine mets. I agree with Joanne and change facilities. With that said, wishing you the very best results with the votrient and zometa.

foxhd

You might

want to read back in my threads over the last 2-3 years. I've been radiated a couple times from base of skull to t-2. I lost use of much of my arms then. And foot drop. I have never fully recovered but am fully functional. Rode my harley until this year. And walked 18 holes weekly. Best of luck to you.

Let me add that I told everyone where my tumors were. But they never showed on any scans until 9-10 months later. By then I was living on oxies. No one was missing anything. The tumors just didn't show. It's been a couple of years and I'm still here.

Footstomper

Welcome to the 44 club

Thanks for filling out your profile.

Your wife sounds great, and you're right its amazing how much love pours out of everyone after the diagnosis.

Ive been stage 4 grade 4 since May 1st 2013, when much to my surprise I dicovered that I appeared to be urinating a fine dark red wine. So I'm still around 3 and a bit years later. I have a scan tomorrow but, as far as I know there is very little chance of me dropping dead tonight. Last time we looked I had a number of mets in my lungs and I'm hoping they have buggered off.

I'm not keen on the image of 'fighting' this disease. It kind of implies that, if we die of it, its because we're weak. Not so.

We live with this cancer (Copyright Fox) and try and control it or eradicate it with the finest products modern medicine can produce. I truly believe that cancer is, through medical science, changing (like AIDS) from a terminal illness to a chronic illness treatable, or even curable, with new drugs and therapies.

Anyway, sorry for the diagnosis, but nil desperandum. Like Gloria Gaynor - You will survive.

JoanneNH

You should request a copy of

You should request a copy of the radiology reports for your scans.  You can do this through the medical records department.   You should also request a copy of the scans on a DVD from the radiology department for your own records. I do this all the time and have never had a problem.  There is a chance that the radiologist did report those mets in your spine and your physicians didn't read the report or the films themselves.  Really ------> You were let down, especially since you reported your symptoms and they were dismissed as nerves or stress.  Someone dropped the ball somewhere along the way.  Red flags on this.

 

Abunai

So, I requested and received

So, I requested and received the imagry and report from my CT scan on Sept. 6.

The original report states: "Pelvic structures are unremarkable"

The "Addended" report states: "Upon further review..." and goes on to list a litany off lytic lesions within my pelvic bones and "lumbar and pelvic osseous metastatic disease..."

I wish they'd seen that in the first place and dug further so they would have found the T6/T7 met before it did as much spinal cord damage as it did.

Jan4you

Just want to welcome you here

Just want to welcome you here and tell you I am sorry for all you are going through. There are others here who are stage IV and still with us.

Know that we'll be here for you as well, if you'd like us to be. Please remember that okay?

Sending you hugs and hope!

Jan

JoanneNH

Does your report state when

Does your report state when it was amended?   I surely would consider changing medical care if you can.

Abunai

JoanneNH said:

Does your report state when

Does your report state when it was amended?   I surely would consider changing medical care if you can.

Yes. It was ammended the day

Yes. It was ammended the day (Oct. 1st) I went into my urologist's office and told him he missed something because my legs no longer worked.

 

Abunai

"Chemo" starts tonight

It took a while, but my Votrient arrived today. Hope it works for me for a good, long, time.

I'd hate to be paying for this out of pocket.

Teashea

Hi Dave

Very sorry to hear what you are going through. Missing mets in a cancer patient seems incompetent. Ask your Dr if you can skip the votrient and go straight to the cabometyx. Many of us are having great results on cabo and there are few side effects compared to votrient. God bless you, prayers going up.

Abunai

Teashea said:

Hi Dave

Very sorry to hear what you are going through. Missing mets in a cancer patient seems incompetent. Ask your Dr if you can skip the votrient and go straight to the cabometyx. Many of us are having great results on cabo and there are few side effects compared to votrient. God bless you, prayers going up.

Thank you, Teashea.

Thank you, Teashea.

I'll look into the Cabometyx.