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concern about metastasis to rib

Jilgirl's picture
Jilgirl
Posts: 7
Joined: Aug 2013

Hi this is my first post here so I`'ll give my history first. Diagnosed in June 2013 with probable rcc in left kidney 7cm and possible node involvement. Radical nephrectomy in Aug. Surgeon did not remove any nodes or adrenal gland. Tumor was contained and shrunk to 6 cm after surgery. T1bnxmx. I 've had a good recovery and have felt good . My ct scan is scheduled for Mar 17th.

My concern is I 've been having pain in my right side in back just above my waist and my left side has started to ache constantly above the incision.  This morning I discovered a visible protrusion of my left rib. It's quite large but no pain when you press on it. My husband thinks I should see the dr immediately but I m wondering if I should wait for scheduled scan? Has anyone else had a similar experience?

 

 

 

 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Jil.  If you suspect bone mets please discuss with your oncologist setting up a full-body nuclear scan as soon as convenient.  That is the only way to find out for sure.

In addition, if it does happen to turn out to be bone mets, make sure you discuss starting on either Xgeva or Zometa in addition to whatever targeted therapy your oncologist recommends (assuming he suggests going in this direction).

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

Don't hessitate to have it radiated if appropriate. I've had the cyber knife on my spine and radiation to my ribs. Not a problem. I need to remind myself I had problems there. Go see your doc.

Srashedb
Posts: 240
Joined: Dec 2013

Fox: I didn't know you'd had cyber; great to know how well it worked! so far, it has been working for my husband's spinal met.

Sarah

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

I had a couple thoracic mets that were intruding into the spinal canal approaching the spinal cord. Treated with the stereotactic approach. Regular radiation to the rib mets. This was sept. 2012. Yale referred me to the Lever cancer center in Waterbury ct. for this.

Srashedb
Posts: 240
Joined: Dec 2013

my husband had 5 sessions of cyber to a T11 met and so far, it is working. 

Sarah

Jilgirl's picture
Jilgirl
Posts: 7
Joined: Aug 2013

Sarah what is a T11?

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

thoracic vertebrae number 11. Same answer, even if I'm not Sarah. We look the same except my whiskers are longer. Common mistake here.

Jan4you's picture
Jan4you
Posts: 233
Joined: Oct 2013

First of all, I am sorry you are going through this scare. I am sure your husband needs reassurance too. I wouldn't wait. Inform your doctor so he can order the proper tests.

I have not had this, but feel for you. We'll walk this journey along side you if you want.

I'll especially will be cheering you forward~

 

Warmly, Jan

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Jill.. welcome to our club... sorry you need to be here..  Hopepfully you are seeing an Oncologist that specializes in RCC.  And if so, you need to call tomorrow and get this looked at.  While your Pathology report is on the good side, your tumor at 7 cm is not that small.  And should your issue turn out to be Mets, then you will need a lot more frequent follow up.

Good Luck..

Ron

Jilgirl's picture
Jilgirl
Posts: 7
Joined: Aug 2013

Thanks for all your comments it's good to have support.  I do not have an oncologist because urologist believed I wouldn't need one.  My pc keeps a close eye on me.  He sent me for a bone scan about 3 months ago because I had rib pain.  It did show a hot spot on left side but the xray showed nothing. Could something develop in just 3 months?  I don't want to become paranoid but this large lump is very freaky.

a_oaklee
Posts: 176
Joined: Nov 2013

I don't think that you should wait til your scan date and the follow-up appointment to deal with this bump.  I encourage you to call your doctor and get an appointment as soon as possible.  Hope everything turns out well.

I really hate to be the one to answer your question of "could anything happen in 3 months time?"   The answer to that question is yes.  Something could happen in 3 months.  My husband is Stage 4 at the time of diagnosis.  He has his scans done every 3 months.  So do other people participating on this site.  I am assuming that is because things can happen within a 3 month time span and the oncologists want to be on top of any changes in order to give the best care possible.

Do not worry needlessly.  Just make an appointment.  Have it checked out in person by the doctor.  I am hoping for the very best for you.

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

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.

Srashedb
Posts: 240
Joined: Dec 2013

my husband was diagnosed with stage renal cancer; his general practitioner had x-rays of his spine which was my husband's first symptoms. An x-Ray taken on 6/29 showed nothing, an MRI on 7/1 showed 2 mets on his spine, one very close to fracturing.

the local oncologist who had no experience with renal cancer gave him at most a year.

Today, he has had a laminectomy, cyber radiation and a radical nephrectomy. He needs scans every 3 months because the doctors want to stay on top of anything.

we left the local oncologist with the dire prediction after sending the MRI to the Mayo Clinic and being asked "where are the other tests?" they were astonished that the MRI was of one view only and nor hung else.

Yes, in 3 months, the cancer can metastasize and any urologist who tells you that you need not have an oncologist and when you complain of pain asks you to wait for a bone scan in 3 months is.... Well, incompetent.

Please follow the advice given to you by the board experts and get, not just an oncologist, but an oncologist who has extensive renal cancer experience.

Sarah

Jilgirl's picture
Jilgirl
Posts: 7
Joined: Aug 2013

Fox thanks for the advice. It's 2 am here and I can't sleep. I don't know if it's anxiety or because of I can't get comfortable. Ive decided to call my pc in the morning and pray I can get an immediate appt.  What kind of test should I ask for?  I am scheduled for ct scan on the 17th but I could ask to move it up. Will it show bone mets? Would a mri be better? I had a bone scan and xray in Oct that was okay.

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

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.

a_oaklee
Posts: 176
Joined: Nov 2013

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.

Srashedb
Posts: 240
Joined: Dec 2013

we were told that CT scans are good for muscles while a full body scan will pick up any bone mets; we were also told that an MRI would be good for monitoring any potential compression issues.

Interestingly, Fox, the oncologist told us that some recent studies show that getting rid of cancer load can actually slow and in rare cases, stop progression.

You seem to be saying the opposite; very interesting.

Jill, once you read the scan results, you will understand why everyone here is telling you to have them done. An MRI is not enough and our oncologist says it is the preferred test by neurosurgeons and it was ordered to monitor the spinal mets.

Sarah

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

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.

Srashedb
Posts: 240
Joined: Dec 2013

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

todd121
Posts: 641
Joined: Dec 2012

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.

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

I am in full agreement with Fox on this.  Get thee to an experienced renal cancer oncologist ASAP.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

sblairc's picture
sblairc
Posts: 188
Joined: Feb 2014

I can't stress enough about seeing an oncologist as some of the more experienced posters in this forum have said.  I loved our surgeon dearly, but I am so greatful my husband agreed with my suggestion to see an oncologist after the surgery "got rid of it all." The oncologist increased my husbands scan schedule. The oncologist also told my husband that bone mets can happen quickly and "you will know it when you feel it" because the pain does not lessen. When discussing this, he emphasised that my husband call and schedule an appointmet right away if he had any symptoms. 

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Now that I know you are not in the care of a proper Dr, I echo the Fox man's opinion.. big time..!  We are both going to act like aligators and snap at your heels until you get this looked at..  Keep in mind if that is a Met, it is NOT going to wait for you to get it checked out.. it will keep growing.. and possibly cause bigger issues...  Tomorrow morning, do it..!

Ron

I am alive
Posts: 229
Joined: Jul 2012

Jilgirl, absolutely go to an oncologist, preferably one with deep RCC experience. Do not put it off. You asked what tests to get.....every 3 months I get a CT of the abdomen, chest and pelvis, and a full body bone scan. CTs are better than MRIs at spotting RCC in soft body tissue. I know this is all scary as hell but you will begin to feel better when you get going in the right direction. Listen to that little voice in your head that questioned your pc's decision. It's your intuition and it's right on. There are lots of people on this forum - and on smartpatient.com - who have lived for years and years with metastatic kidney cancer. And live well. But the key - beyond the luck of the draw - is aligning yourself with a knowledgable oncologist. And as time goes on you may change oncologists to chase down clinical trials or newer thinking. Everything is fluid. One of the trickiest parts of all this is learning to live with uncertainty. But - and I think we can all testify to this - you do get the hang of it.  Please keep us posted on your progress. We are in your corner swinging!

I am alive
Posts: 229
Joined: Jul 2012

It's SmartPatients.com (I gave you singular above, not plural)

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Now Jill... don't make us get real pushy and all that...  Remember the fear is far worse than the reality...  I just read a story on SP from a lady that is now a 30 year survivor of Kidney Cancer and Ovarian Cancer..  Yes it is rare to have more than one type of Cancer, but it does happen..  This lady is very inspirational, and has been living her life.. yes and dealing with Cancer, but living is the key word..!  The faster this is addressed the easier and usually better the result.  Holler back at us any time.. we are here for you... we all want to celebrate 30 years of more living... or more..!

Ron

Jilgirl's picture
Jilgirl
Posts: 7
Joined: Aug 2013

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".

 

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

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's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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.

a_oaklee
Posts: 176
Joined: Nov 2013

Yeah!  I am celebrating that you are getting your scans moved up and that you will be seeing an oncologist!  Good luck Jil.

 

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