Should I Seek Peace of Mind?

donna_lee said:

Was it open or lap surgery

??.  Just a thought, but you could have developed adhesions that are restricting muscle and facia movement.  Ask the surgeon.

I won't downplay your concerns about a mets, as they do happen.  Even after the doc says, "we got it all."  The zinger is that "they got all that was visibly obvious to the naked eye."  Let him/her know of your concerns.  The most effective test is a CT w/wo contrast; and then most effective if you have a baseline test taken post surgery and post swelling.

If he says no to a test, ask him to explain the reason.

Hope this gives you a plan.

Donna

Jason,

If there are mets the first place they go is to the lung. A chest xray will show nodes 8mm or larger on the lung. Those smaller are usually of no concern.

A chest CT will show smaller nodes even those of no concern which have been there for years.

Depending on your insurance you will probably qualify for 1 or the other and you may have had 1 or the other for your pre surgery workup.

Icemantoo

jason.2835 said:

Robotic lap

Sorry, Donna,

I sometimes forget that every post is new and I need to put all the info in...

Robotic-Assisted laparoscopy, simple neph... Where the back pain is a little far from the site of surgery... the doctor told me adhesions are very rare with this surgery because most of the incision sites are about a half inch long.  

As you said, I'm just trying to get a baseline imaging test done... i may have little inconsistencies that AREN'T cancer, but are just natural little whatevers... isn't it important to know what's where?

 

I'm new to kidney cancer, but I have a feeling that I've read this board through several times recently. My impression is that chance of metastasis for a Stage 1 Grade 2 RCC are extremely low. The stories of recurrence here mostly happen with bigger tumora.

Your pain could also be psychosomatic. For example, doctors advised my fiance's parents to get checked for kidney cancer, as he got it so early at 35 years old. As soon as his dad heard about it, he developed back and side pain and assured himself that it is his kidney. Pain was constant for 2 weeks. He had his ultrasound yesterday, kidneys we're OK. He admitted that pain disappearEd immediately... So we could simply be too aware of our bodies now,after hearing this diagnosis.

tyjsbtn said:

I am right there with you

I had my full nephrectomy (stage 3 grade 4) in August and have my 1st labs(1/12/15) and scans (1/26/15). Up until a couple of weeks ago I have not had any pain except what would be normal for a full open nephrectomy.  All of the sudden I am having all of these little twinges in my side and back.  I just keep telling myself that they have probably always been there but not really noticed until now since I seems to be on "high alert".  My daily mantra is that there is nothing to worry about until there is something to worry about.  

I fully intend to ask my dr about it all on the 26th when I get all of my results but until then it is "Don't worry, Be happy" mind frame that I am keeping.

 

Telana

Is the moon full?  If not, why are all of us stage 1 and 2 patients having aches and pains this week?  I had an open partial nephrectomy in July.  Like AndyE, I have had for the last several weeks neck stiffness and numbness in my right arm and hand.  Saturday evening after returning from a fire call (did not exert myself), I developed the worst lower back pain I have had in my 47 years.  I did not go to work Monday, Tuesday or today.  Today I am feeling a bit better.  I went for my ultrasound and chest xray on Monday for my 6 month follow up.  On Friday, I will get a kidney function test and see my urologist oncologist.  I'll quiz him about my aches and pains, and the CSN phenomena here. 

Positive_Mental_Attitude said:

Is the moon full?  If not,

Is the moon full?  If not, why are all of us stage 1 and 2 patients having aches and pains this week?  I had an open partial nephrectomy in July.  Like AndyE, I have had for the last several weeks neck stiffness and numbness in my right arm and hand.  Saturday evening after returning from a fire call (did not exert myself), I developed the worst lower back pain I have had in my 47 years.  I did not go to work Monday, Tuesday or today.  Today I am feeling a bit better.  I went for my ultrasound and chest xray on Monday for my 6 month follow up.  On Friday, I will get a kidney function test and see my urologist oncologist.  I'll quiz him about my aches and pains, and the CSN phenomena here. 

I have been feeling the same way....EVERY ache and pain is getting checked lately....and I get a lot at my age!! I think the ol' doc is getting tired of me. But you know what? Get it checked if you can, so you can forget about it! What do you have to lose?

Hugs

Jojo

foxhd said:

OK, I admit it

My pain is also bad. Maybe the weather has something to do with it. Let's all get together and discuss it over drinks. What do you think? We'll go south.

foxhd, I am in.  I think you are in my neck of the woods.  I am in New Joisey.  Florida, or further south?  It's heading to single digits here tonight.  Yikes.

I can completely relate to how u are feeli g... Last Jan (2014) was my first  scans and blood work following a partial nephectomy using yhe robot. At first after surgery I had pais and would start to worry... I understand how every small pain can cause fear.... My urologist surgeon has been great and even though pathology recommended scans at 3 months then every year, he opted for scans and blood work at 6 months as well. I am now at the one a year level for ct scan blood work and they are adding chest xray instead of the chest, abdominal pelvis ct scans. I wouuld ask doctor as to why no scans.

jason.2835 said:

Scans

Hi, Leslie,

I'm not sure WHAT the plan is, that's what frustrating at this point.  It's still early in the game; I haven't even had my surgical follow-up yet so i am sure we will discuss what the future holds.  The doctor did say "we'll become friends" and he would see me for the next "10 years," so I suppose that means I will at least have visits and scans for a while.  It's just possible that this particular doc wants to take it one step at a time as to not overwhelm me.  Who knows.

jason, I am in the same boat as you as far as not knowing what the plan is.  I plan to ask about the plan at my first followup on Friday.  I am guessing I will go for scans every 6 months for 2-3 years and then scans out to 5 years, but that plan can change depending on what comes up at the scans.

Positive_Mental_Attitude said:

jason, I am in the same boat

jason, I am in the same boat as you as far as not knowing what the plan is.  I plan to ask about the plan at my first followup on Friday.  I am guessing I will go for scans every 6 months for 2-3 years and then scans out to 5 years, but that plan can change depending on what comes up at the scans.

It's cold. You'd have to hold on real close.

I forget that most everyone here has jobs that are not in health care. Or insurance for that matter. In most cases there is a protocol for almost everything. Almost like a rate manual at a car repair business. If it is in the insurance companies best interest to scan at 6 mos., then that will be written in their protocol. And that is what your doctor will do. Whether he likes it or not.

However if you aren't comfortable with that plan, then you need to go fight city hall. And your argument better be real compelling. All of their arguments are based on statistics. That means they will be right most of the time. But wrong sometimes. You need to convince them that a scan will be cheaper in the long run. You almost have to convince them that the scan will be positive for mets. But even then, the growth rate factor says that waiting another 3 months won't matter much in the overall change of condition.

DSFrey said:

Before my partial nephrectomy

Before my partial nephrectomy my doctor told me that I would need follow up care for many years but then after the surgery when my post-op baseline ct scan was taken the same doctor told me my follow up care was done. Somehow many years became just 3 months. That didn't feel right to me and made me very frustrated. It also amplified my anxieties concerning the little aches and pains I was feeling. I had to go to my family doctor and get a referral to an oncologist who agreed to take over my follow up care and continue it. I am now much more at peace and I don't even worry about the little daily pains, since I know if they amount to anything I'll find out in time.

I think there are many people here that you can thank for your now aquired peace of mind. It is a big swing in your confidence. Good for you. Good for everyone.