concern about metastasis to rib

foxhd said:

Jil, Jil, Jil

Number1.....NEVER let your care be determined by your pc or urologist!! If you have cancer, you MUST get a renal cell oncologist. There is no exception especially if there are possible mets. This entire forum of members will agree. Your doctors are NOT qualified. This is not general health care. This is about saving your life. ....I am asking members who read this to post confirmation on this so that you realize just how important this is. OK members?

Number2....as to "What can happen in 3 months?"..I had my tumor removed and they said they got it all. 6 months later I was told that I had over 20 mets and there was nothing they could do. Several oncologists agreed. I was terminal with 6 months to live. I tried one more time and found the doctor who saved my life.

You may like your doctors and be afraid to hurt their feelings. They will do their best. All the way to your grave. They just will not be capable enough to take care of you properly. Please don't believe them when they say you do not need an oncologist.

RUN.

You can't go wrong following the fox man's advice

foxhd said:

test

Jill, a ct scan with and without contrast is the norm. Yes it shows bone mets. No an mri isn't better. And Oct. was pretty long ago. For close to a year and a half I was getting ct scans every 6 weeks. That is because when the disease is active it can progress quickly. In general it is a slow growing disease at the primary site(kidney).But once the primary tumor is removed, the progression of mets can be rapid. There seems to be an inhibitory effect of met growth while the primary tumor is present. After nephrectomy, this inhibition is absent.

I suggest that if your primary does not schedule a scan immediately, then you should go to the ER with c/o pain. I'd mention that I'd had a recent nephrectomy and bone mets are probable. They will scan you.

I told you that this forum would all agree on the need for an oncologist. It will be close to 100%. Even if your pc is good, is concerned, and is proactive, it is a mistake. 10 to 1 says your doctor would never let a family member with cancer be folowed by a pc.

Jil,  I agree with everyone that you indeed need to have a renal oncologist.  If you can get into your primary care doctor quickly and this doctor listens to you, just tell him you want to see a renal oncologist immediately.  Doctors usually have clout with other doctors.  Our PC got us into a specialist on a Saturday morning.  He came in just for us with a warning of "don't be late".  You really should be treated by a renal oncologist and not your PC, nor the surgeon, or a urologist.  Get online, find one, start making phonecalls for an appointment.  If you have to be referred (for insurance purposes) I think your PC will do that for you.  Insist on it.  Insist on an emergency appointment.  Perhaps they can move the date of your scan up if your doc requests it.  I bet you could move the date yourself.  Call them to see if they have an opening earlier.

I encourage you to have copies of all your lab work and scans.  Get copies of the discs also.  You should have a copy of your pathology report.  You have not mentioned the stage of the cancer cells.  They are staged 1 thru 4.  The higher the number the more mutated or agressive the cancer cells are. 

Re bone cancer pain:  It is constant.  It doesnt change with positioning or time of day.  This is what my husband experiences and what I have read.

Everyone here is on your side and trying to be the best help for you.  Please take care of yourself.  Fight for you.  Don't worry about hurting some doctors feelings....it's your life and it's more important than stepping on some doctors toes or trampling his ego.  I do hope that you find out it is nothing...but you can't ignore it or wait.

foxhd said:

test

Jill, a ct scan with and without contrast is the norm. Yes it shows bone mets. No an mri isn't better. And Oct. was pretty long ago. For close to a year and a half I was getting ct scans every 6 weeks. That is because when the disease is active it can progress quickly. In general it is a slow growing disease at the primary site(kidney).But once the primary tumor is removed, the progression of mets can be rapid. There seems to be an inhibitory effect of met growth while the primary tumor is present. After nephrectomy, this inhibition is absent.

I suggest that if your primary does not schedule a scan immediately, then you should go to the ER with c/o pain. I'd mention that I'd had a recent nephrectomy and bone mets are probable. They will scan you.

I told you that this forum would all agree on the need for an oncologist. It will be close to 100%. Even if your pc is good, is concerned, and is proactive, it is a mistake. 10 to 1 says your doctor would never let a family member with cancer be folowed by a pc.

Jill,

I agree with Fox. You need to be seeing an experienced medical oncologist with some experience with RCC (at a minimum). What is best is a medical oncologist who specializes in RCC. Some medical oncologists rarely see a kidney cancer patient. Some may see 3-4 a year. A doctor who specializes in this may see 20 patients a week.

This is an unpredictable cancer with a very fast changing field of research going on. Only experienced medical oncologists are qualified to know the risks and treatments of possible advanced disease. Urological oncologists don't treat this type of disease once it advances beyond the kidney. Urologic oncologists are basically urinary tract surgeons. They don't treat metastatic cancer. Personally, I think their specialty name is misleading. It completely misled me into thinking they had oncology training similar to a medical oncologist. You want a medical oncologist, which is someone with training in internal medicine, hematology and oncology who studies and treats metastatic cancer using chemotherapies and works with other specialists like radiation oncologists, etc.

Look to cancer centers that are participating in research studies and drug trials in renal cell carcinoma to find doctors in your area that have expertise. Or ask here for referrals. I'm sure somebody on here might know an RCC specialist in your general area.

Todd

P.S. The minimum standard of care for your case is a chest x-ray and ct scan of the abdomen and pelvis 4-6 months post op and again at 1 year. The RCC specialist I've been seeing has suggested ct scan of the chest, abdomen and pelvis at 4-6 month intervals the first 2-3 years. You really should be followed closely the first 2-3 years. Best wishes to you. I hope whatever problem you're having resolves itself.

foxhd said:

opposites

Sarah, you're right.  In many cases, when a kidney tumor is found and removed, it is the only cancer found. "We got it all." Often these tumors have been growing for years. Kidney tumors are known to be slow growing in most cases. But follow up scans at 3 months, 6 months, often find many satelite tumors which weren't observable before. My case for example. Where did they all come from?  They were there. Setting up shop but seemingly semi-dormant. Whether the primary releases chemicals or if it is in the coding of the mets, once the primary is gone, the mets can rapidly begin to grow and show up on scans.

In your example, you are talking about the immune system and immunology. As the kidney tumor grows, your immune system tries to attack  and destroy it. Unsuccessfully. The tumor is able to fight the immune system off. So take out the tumor. Now if there are satelite tumors growing or settling someplace else, they are small. The immune system is more capable of attacking these and successfully destroying them. Stopping progression.

So much depends on the type, the stage and aggressiveness of the cancer.

Fox: 

you have described the nature of this cancer quite well... UNPREDICTABLE. Our oncologist has told us that monitoring with scans every three months is a way of taking care of any mets early.

He has told my husband that he will see him in 3 months BUT if he feels anything wrong, no matter what, to see him sooner.

So, when my husband felt discomfort in his neck, I set up an appointment and he was tested and seen earlier than the 3 months. Turned out to be "normal degeneration" but checking it out was necessary.

In my husband's case, all VISIBLE cancer was removed but because it was in the renal vein, microscopic disease should be presumed. The only uncertainty is how the cancer will behave. His cancer was grade 2.

Sarah

Jilgirl said:

Progress!

Wow, you guys are awesome! You convinced me to take immediate action. I did get in to see my pc yesterday.  He was amazed to see the lump on my rib. He did try to down play it by suggesting that my rib was out of alignment from the nephrectomy, but at the same time he said he was calling to get the scan changed to this week and he has also referred me to a oncologist. He wanted me to leave there and go straight to the lab for blood work but as it was late afternoon they were closed. He did try to encourage me by saying that he had several rcc patients and none had mets. My path report was as good as any could hope for but I guess you can't rely on that. I feel relieved to just be taking action. I don't know if this oncologist is the right one but it's a starting place. I will keep you informed of my test results. Thanks again for listening, most people don't understand the nature of this disease and you can't give a history lesson to every one who asks it's just easier to say "I'm fine, thanks".

 

Now you're cooking. You took a huge major step. You are the boss and are in control. Good job. I'm glad we got to you.

The part where he says he has several RCC patients and none have mets is another red flag. PC's should not tell their patients they can handle their cases. If you have cancer, you need an oncologist. Good luck with the scan.

GSRon said:

Yes, and now we all feel an

Yes, and now we all feel an "Oh Sh**" for those other few RCC patients..  This doc has overstepped his bounds.!  A good Onclolgist sees more RCC patients in a day than this Doc has ever seen.   And yes even a great Pathology report, it is just that.. a great report it is not an absolute.  That said, until you get the final word, that lump could be something else..  Hang in there..!

Ron

I developed lumps on my right side (left nephrectomy), turned out to be lypomas, doc said for mets to show up externally and not internally would be unheard of. That said its still a good idea to have it checked.