Hi. I'm new here, I'm scared and I need support.

WhatIsLife said:

In a case like this, perspective goes out the window...

...at least it did for me, but I think I am getting it back, thanks to all the common sense and feedback I've been getting here on this support network. There is a lot of common sense here, something you won't get from any doctor. I'm not putting down doctors, but people living with cancer 24/7 know the score. Thanks Donna for your encouraging words, and I do think this roller coaster I've been on might finally be slowing down a bit!

Kevin

I was diagnosed almost five years ago. There was a tumor in my left kidney with the largest dimension 7.1 cm (stage 2). It was removed no problem and no other signs of cancer. MRI a year later showed all clear, but the next year the MRI showed a tumor in the lymph node in my chest. Had a biopsy done which was negative, however the surgeon who took the biopsy said that it looked like cancer to him. Also had a PET scan and it showed activity in the area. I did not have an oncologist at the time so I met with one and discussed options. Due to the vaugness of the diagnosis we decided to wait 2 or 3 months to see what it did. In that time the tumor increased in size so we decided on radiation followed with chemotherapy. The tumor was radiated at the end of October 2014. Every weekday for three weeks. The radiological oncologist initially said that she would do five weeks, but after some thought she decided to shorten the time and increase the daily dose. The only side effect that I had was a sore throat for a few weeks. In January my wife and I went Spain on vacation and had a great time. At the end of January I had another MRI scan that showed the the tumor was greatly reduced.  Before treatment the tumor was 5.6cm, now it is 2.1cm and has stayed that way since the radiation a little more than two years ago. I started taking Votirent 800 mgd/day in February, 2015 with some side effects, not bad and they are managable for me. This coming February will mark 2 years on Votrient. I had been getting scans every three months since January 2015. The last time I went to the oncologist there was no change (which is a good thing in my case) and we decided to wait 6 months instead of the normal 3 or 4 for the next visit.

I know that this is hard to process, but from now on you need to think about this disease as something that can be managed and treated. Everyone is different and everyone reacts differently to treatment. The most important thing for me is to understand my current situation and understand the options available to me, then act accordingly. There is no such thing as knowing too much when it comes to dealing with this condition.  

I do not speculate on what might be because it really does me no good. You need to listen to your doctors and not be afraid to ask questions, but remember that at the end of the day it is still your body and you need know what is going on with it.  All I can say is that it gets easier. The worst part of this whole process for me was the minutes after my doctor gave me the initial diagnosis of cancer. When I got the news about the tumor in my chest 2 years later it was of course concerning to me, but nowhere near as frightening as the first time. I have come to realise that my condition is just something that I have to deal with. Don't let this disease define you, there is still plenty of life ahead for you and you need to focus on that. I hope that this helps somehow. I wish you as much luck as I can.

It's a word for a bus or train or plane stop on a trip.

You look like a pretty big guy.  So pull up your big guy pants and give it H***.  Of course, it helps to know exactly what you are fighting and those kinds of details, but you are on the right path at this time.  Perhaps if you had had the MRI or bone scan earlier....but hindsight is not the best for diagnosis.

For myself, I handled a lot of 2-4-D (same as agent orange) on our farm; and about 35 years later I was D'xd with cancer.  Who knew then it was going to cause problems for those who were exposed to it?  Oobviously, not me.  And I probably wouldn't have been more cautious, either.

On this board, it helps to have a sense of humor-for groaners, the macabre, and the belly laughs.

You're not going to die soon, you have a lot more living to do, so get on with living your live with the NEW YOU.

Hugs,

donna-lee

Hi, Kevin,

As we discussed over on my thread, we have similar situations and are about the same age group. I also was a heavy smoker for 40 years, 1-2 packs/day.

My met diagnosis was really shocking to me, because my primary kidney tumor was only 3.3 cm, and was graded T1b, Fuhrman Grade 2. So it seemed like a no-brainer that this thing would not metastasize. In fact, the docs had given me an 85% chance that it would not. You know the rest of the story... That met was probably there at the time of nephrectomy, but was too small for detection.

After the met diagnosis, I spent a few weeks wallowing in self pity. But once I started hearing the stories from people in this forum, it gave me some hope, and then the strength to close that door behind me, and to look forward to opening new ones.  I moved my treatment over to Stanford Cancer Center, where I went to a few seminars, talked to a few cancer patients, and of course met my new oncologists.

JoJo mentioned it, and it is good advice, I believe, to have a Urological Oncologist, as RCC seems to behave differently and is treated differently than other cancers. I also have a general oncologist who oversees my case, but the RCC oncologist recommends which treatments should be performed. Actually, they all collaborate together, including the radiation oncologist. It's a good team.

Which bone(s) is your met located? Mine is in the inferior ramus bone in the lower pelvis, down in the pubic area (yeah, nice place for it...), and has been ruled non-resectable (inoperable) by the docs. I start radiation treatment next week.

I'm wishing you all the best. Once again, the folks on this forum are fantastic, and can offer great support and hope. We are not alone! Have a Happy Holiday!

Roger

I am glad to read all of your posts and see that you are feeling more hopeful. I am sending up prayers for you as you get these tests, I pray for peace and hope in your heart. God bless.

WhatIsLife said:

Hi Roger

When I first was diagnosed with kidney cancer, I have to admit, I didn't really pay much attention to specifics, I guess I went into immediate denial. The urologist explained to me things like the size and grade but all that went went over my head...I just wanted to know is what can be done about it, and is it "terminal." He told me it has taken over my right kidney so in order to remove the cancer, he will have to remove my kidney, but that I can live with one kidney with no problem. This I already knew because I had a sister-in-law who had kidney disease, so I knew a little about that.

Then of course I wanted to know if the cancer had spread. My urologist told me there were no indications that it had, and before surgery he did some more tests to be sure...and then after surgery he told me I was cancer free, but I would need to be monitored and he wanted me to come back and see him in three months for a follow up. In the meantime, to take it easy and let the incisions heal....and in about 6 weeks I should be able to get back to normal life.

So I was feeling rather cocky I guess. So when a few weeks later I had a routine MRI done on my back, for an old back injury, and it showed lesions "consistent with metastatic disease," my world came crumbling down.

I went to my urologist and found an oncologist, but while I was waiting to see the oncologist, the urologist ordered a bone scan and a thoracic MRI spine scan. A few days after the tests, the urologist called me at home, on a late Friday afternoon, and gave me the bad news, and really, of all the things he said, the only thing I remember him saying is "the prognosis is poor." So I sunk even lower.

About a week later, I finally saw the oncologist who expalined the tests in a more approachable way, and who also told me much of what everyone here has said, but still, my world was spinning so fast I don't think I caught much of what he said. He did tell me that it's not an immediate death sentence, that there's many medications and therapies available, and if those don't work, there are drug trials available, etc., and I shouldn't give up hope, but I really don't think I believed him until I came to this board, in a panic, and heard the same thing from everyone else who has actually gone through it. That made me a believer, so now I can accept it.

Right now I think I'll stick with my urologist, although his bedside manner needs a little work, and my oncologist who I have a little history with, but I'm always open to suggestions as to what kind of doctor I should see. I'm having a needle biopsy done Dec 27th, which I imagine should tell the docs and me how bad it is, or maybe that it's not so bad.

And I'm going back through my lab reports becasue I guess it's time I learn about my disease. Looks like my tumor was pretty big:

-Tumor size: 6.3 x 6.1 x 6.0 cm

--Furman Nuclear Grade: G3

As for which bones the met is located, here is what the bone scan says:

MRI THORACIC SPINE WITHOUT AND WITHOUT CONTRAST:

"There are multiple enhancing lesions as follows: Right scapula, Left pedicle at C7, anterior body T2, spinous process at T3. T6 vertebral body, right lamina at T8, expansile lesion left rib at T8, 2 lesions in the T10 vertebral body body left pedicle T11, and T12 vertebral body. There appears to be epidural extension on the left side at T11 but there is no canal compromise. No pathologic fracture is noted. There is a Schmorl's node in the superior endplate of T12."

Now what the hell that means, who knows? The Bone Scan findings are also in a similar, foreign language. My oncologist hasn't said anything about surgery being an option, and if I remember right he did say chemo is not an option at this point, but I'm guessing I'll find out more once I have the needle biopsy done.

The old me would be googling all that, but I've learned that only drives me even more crazy so I'm going to wait until I see the doc again and I'll be more prepared, and less emotional, and I'll get him to explain it to me.

But I agree with you with you 100% - the folks on the forum are fantastic! I hope the radiation treatment has only positive results for you. And happy holidays to you and yours!

Kevin

Hi Kevin, My husband had a 10 cm mass on his left kidney...it was removed and he was "all clear" for five years.  It came back in May with lesions in his lungs, thyroid, pancreas and lymph nodes.  I cried for days....but I'm a nurse so I went to work... Scans, Oncologists and such.  He did High Dose IL2 first and that didn't do anything, but he has been on Votrient for six months and his tumors are shrinking and disappearing.

My best advice is to get someone you trust to go with you to the appointments.  They will hear things that you won't.  Keep a journal of what you are told and questions you want to ask....and make the doc take the time to answer them.  The doctor will have a nurse, and she/he will know A LOT....so use them for anything you need answered.  Our nurse Jada has been amazing.  Also, it's hard to wait for the scans after treatment to see if they worked, but wait you will : )

It is scary.  And it will change your life.  But it is a livable life as so many on here have already told you. 

Good luck as you navigate with all of us here : )

Toni