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I don't even know where to begin, or what to feel, or how to proceed.
DH had pain with urinating and was passing blood. I insisted he go to the ER rather than wait for an apt with his PCP, so Tuesday night he went to the ER. They did a lot of diagnostic tests, said he had an infection, gave him antibiotics, and sent him home. the next morning, they called and said they found a "small mass" on his right kidney and suggested he follow up with a local urologist. He saw the urologist today, who said the mass was cancer. My head is spinning with a thousand questions. I didn't go with him, so I'm getting information 2nd hand, and dh tends to summarize rather than give details.
According to dh, doctor said 90% of the time, such masses are cancer. Doing a biopsy is not recommended, for 2 reasons---
1--sampling error. Its possible to grab an unaffected piece of tissue, resulting in a false negative.
2-- possibility of spreading the cancer by poking around.
Ok, so, doc recommends 2 possible routes--
surgically remove entire mass, which is about 2 cm
leave mass intact but freeze it so it won't spread
Doc said chemotherapy and radiation are not indicated for this type of cancer, he called this a "surgical cancer"----I suppose that means its best treated with surgery. Doc also said its at a primary stage, and this is a slow-growing cancer, so, we could even wait a year to do anything, but, of course, he recommends sooner.
Like I said, my head is spinning. What could have caused this? How do we know it hasn't already spread? And, is this the best doctor for our situation?
The doc (according to dh) appears to be about 30's, so, how much experience has he had? What type of infrastructure does he have for diagnoses, etc? He even said there's a 10% chance its not cancer. If not cancer, then what is it?
Too many unanswered questions......and, its all thrown at us at 4 pm on a Friday afternoon This doc hasn't even scheduled this surgery, he wants a clearance from DH PCP first, which I suppose is prudent, but I'd think he should go ahead and schedule the surgery while pending the clearance.
We live about an hour's drive from MD Anderson cancer center, one of the world's leading cancer centers. I think we'd be foolish not to seek their opinion. People come from all over the world to MDA, why shouldn't we? Like I say, its too late this weekend to make an appointment, so, we just wait until Monday.
So, we spend the weekend going about our business, trying to keep the panic back while we research our options.
Let's look at the "positives" of the situation:
We have excellent insurance---not Obamacare
We live within driving distance of a world-leading cancer center
They say this mass is in the early stages, about 2 cm, and it grows slowly
I'm a fighter. I've dealt with health problems most of my life. I was dx with rheumatoid at age 21, and I've fought it every step of the way. I refused to crawl into a wheelchair and watch life go by. Well, I'm also a fighter for those I love.
Like I say, my head is spinning. How do we know its not already spread? If not cancer, what is it? How will this affect us financially?
Like I said, I'm a fighter, but right now its so frustrating, I have to wait until Monday AM to begin!
First, take a deep breath. This period is one of the hardest - not knowing and not having a plan if it *is* cancer is rough.
I recommend you bring a notebook with questions already outlined. If you have a smart phone, download a voice recording app and ask the doctor if you can record your conversation. I found that as much as I thought I knew what I was going to ask, I forgot once in the office. And then I didn't remember things quite right when I left. It's stressful and stress does things to your brain. Theres no shame in it!
2 cm is pretty small. Not knowing what type of cancer it is, it seems like it's likely the doctor will suggest removing it and then testing the mass once it is removed. This can also be called an excisional biopsy. My cancer was diagnosed by removing a swollen lymph node that was more than double that size and then testing once it was removed. In my case, my oncologist did this rather than a needle biopsy because for my specific cancer, it's a little like a chocolate chip cookie. If the needle hits the chocolate chip (cancerous cells), great now you know. But if it hit the cookie part, it's inconclusive and would need to be removed anyway.
He will also likely have a series of scans, including a PET scan, to see if the cancer has spread.
MD Anderson is excellent - it is where many people go for 2nd opinions. If it makes you feel better, get a 2nd opinion elsewhere. I always suggest it when I meet other people at the beginning of this Kalfkaesque experience. Cancer isn't always "caused" by something. My standard response when people asked me how I got mine was that I rolled around in toxic sludge for a little too long as a kid. As a young adult cancer survivor, I have met more seemingly healthy, vegan, marathon runners in their 20s who have developed cancer than I'd like to think about. Healthy lifestyles can mitigate the risk of cancer, but sometimes it just happens. Family history and genetics contribute to, and we don't even know all the ways that happens yet!
I also recommend that you and your husband both seek out support in the form of therapists and social workers.
I had what was suspected kidney cancer that wasn't. I learned kidney cancer is not treated with chemo/radiation. Surgery is the treatment. And I could have lived with one kidney. My surgeon told me kidney cancer has a distinct color, forget what now, and that was my first question after I woke up - what color was it. They removed part of a rib to get to the kidney, never noticed any issue.
I had what was suspected kidney cancer that wasn't. I learned kidney cancer is not treated with chemo/radiation. Surgery is the treatment. And I could have lived with one kidney. My surgeon told me kidney cancer has a distinct color, forget what now, and that was my first question after I woke up - what color was it. They removed part of a rib to get to the kidney, never noticed any issue.
Thanks, I need something to hold onto.
About 20 years ago, I found a lump in my breast. They did an ultrasound and found it to be a solid lump, which is usually cancer, or so they said. You can't do a needle biopsy on a solid tumor, so, they surgically removed it. It came back benign. They almost seemed disappointed.....their statistics didn't bear out their diagnosis. I forget if I had the surgery done in Methodist or Woman's, but it seemed they almost wanted to be "right" based on their stats.
My dh went through a series of tests, including CT scans, x-rays, blood tests, etc, then they sent him to a urologist who said its definitely cancer. The treatment is, like you say, surgical removal of the kidney, or at least the mass. I felt it was irresponsible for the doctor to make a diagnosis when he's not 100% certain, which can only be done by surgical removal/analysis of the mass. Its put us into a tailspin emotionally, without a definite diagnosis.
I will have him go to Anderson. We want the best surgeon to remove the mass. You want to spare as much of the kidney as possible, and I'm just not too sure this local guy has the experience Anderson does. Then, we want the best diagnosis of the tissue, which takes expertise. it doesn't come out with a label telling you what it is!
I've battled the "big, bad Texas Medical Center" before, I can do it again!
I'm a three time loser still going strong. One was even a nasty...a well developed colon tumor.
First thing is relax. Most of these are not killers and even many that might be killer are defeat-able.
Run right off to the best place you have available. And if you don't like the story back check them.
And expect to survive and get well. In some cancers I think the ability to persevere may be as important as the chemo or other treatment.
I've had plenty of experience with that!
At age 21, I was dx with rheumatoid disease. Actually, the DX was given to me on my 21st birthday, welcome to adulthood! This was back in 1975, so you can figure my age if anyone cares. There wasn't much the could do for RA back then. I was told I would be in a wheelchair in a few years, and to forget about finishing college, I would never do so and just waste my parents' money. Hey, they didn't know me. I told such doctor he was "full of $hit" yes, I actually said $hit to a doctor! I've learned to be a bit more tactful over the years, but I don't back down. I did graduate college, went on to a career, it was an uphill battle all the way and still is but I learned not all doctors are the same, and not to take the first opinion offered. Back in those days, you didn't question doctors, they knew it all. Well, I found they didn't.
I expected to continue with a normal life. I expected to graduate college. I expected to have a career, family, home, etc, not to live in some rehab facility. It would be a lot easier, to sit in a chair and let someone push me around, but that's not what I would accept. I just underwent my 3rd hip replacement, about 8 weeks ago. Its not easy, but its what you accept for yourself.
we have an apt next Monday at MDAnderson. We must pay $750 first, before they will even see us
Ok, I think they figured that wrong, we should be at 100% because I maxed us out for the year, I just had a hip replacement done 2 months ago. Seems it never ends, one medical bill after another! Even with insurance,we are stuck in copay hell!
Well, I start the insurance battle tomorrow, been there, done that, at least I have the experience to navigate the medical system.....
My dad had a renal tumor which they removed endoscopically then froze the area. Unfortunately the sample of the biopsy they removed was too small to definitely rule cancer in or out. Thankfully though that area has shown no more growth on follow up MRIs.
Take 1 step at a time. First get the mass positively identified and get a body scan to rule out any spreading.
we have an apt next Monday at MDAnderson. We must pay $750 first, before they will even see us
Ok, I think they figured that wrong, we should be at 100% because I maxed us out for the year, I just had a hip replacement done 2 months ago. Seems it never ends, one medical bill after another! Even with insurance,we are stuck in copay hell!
Well, I start the insurance battle tomorrow, been there, done that, at least I have the experience to navigate the medical system.....
Good luck. I had a monster copay, but it was nice when most of the $250,000 chemo bill was picked up by insurance. And the visit the Mayo Clinic later on was covered.
My dad had a renal tumor which they removed endoscopically then froze the area. Unfortunately the sample of the biopsy they removed was too small to definitely rule cancer in or out. Thankfully though that area has shown no more growth on follow up MRIs.
Take 1 step at a time. First get the mass positively identified and get a body scan to rule out any spreading.
Best of Luck to your DH.
That sounds like the worse possible outcome---
three possibilities yes, no, or maybe
That's why were going to Anderson. Hopefully they will do the best possible biopsy. Meantime, dh has been super-busy with work, which is good, it keeps his mind off this. I do free-lance work from home, which gives me the flexibility to pursue the paperwork. Many people have to quit work to handle the time consuming paperwork, hours on the phone, battling insurance, pharmacies, appointments, yadda, yadda, not to mention going through the actual treatment itself! Such problems destroy lives, one way or another! Even if a problems is treatable, many times a person can't afford the treatment, or cant' get there due to transportation issues, or loses their job due to being off work so much, then loses insurance, or a family member takes FMLA to care for them, then loses their job when the leave runs out---I've seen it all-----at least I know what we're up against ......
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This doc hasn't even scheduled this surgery, he wants a clearance from DH PCP first, which I suppose is prudent, but I'd think he should go ahead and schedule the surgery while pending the clearance. 
Cancer isn't always "caused" by something. My standard response when people asked me how I got mine was that I rolled around in toxic sludge for a little too long as a kid. As a young adult cancer survivor, I have met more seemingly healthy, vegan, marathon runners in their 20s who have developed cancer than I'd like to think about. Healthy lifestyles can mitigate the risk of cancer, but sometimes it just happens. Family history and genetics contribute to, and we don't even know all the ways that happens yet!
