CSN Login
Members Online: 0

You are here

Should I Seek Peace of Mind?

jason.2835
Posts: 337
Joined: Nov 2014

Hi, all,

So I have a follow up ultrasound, blood test and visit with my urology surgeon scheduled in March 2015.  After my surgery on October 21st, I didn't have any further image testing done beyond blood being taken.  I did go the ER for stomach pains as a precaution in late November where an ultrasound was done, but that was more for the stomach/gallbladder issue.  I also saw my primary doctor before Christmas and everything was well at that point.

HOWEVER, now I am falling into the "what is this pain" trap that I can't seem to get out of, I've had some weird upper-middle back pain that is nagging me... As far as I know none of the doctors have any plans to put me through another MRI, CT or bone scan.  I am aware that in my case, when the tumor is so small (2.8 cm) and Fuhrman Grade 2, that the risk of metastatic disease is pretty low.  But still.  Should I push for an imaging test that will cover what wasn't seen on the initial MRI I had in September of 2014?  Or should I just shut up and thank my lucky stars that the cancer was caught so early.

I feel like the latter is what the docs want me to do, put I also feel that, to some extent, they are lulling me into a false sense of security.  I read stories of recurrence and metastases on here every single day.

Any advice (even if it is to calm down) is appreciated Wink.  

donna_lee's picture
donna_lee
Posts: 966
Joined: Feb 2009

??.  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

icemantoo's picture
icemantoo
Posts: 3282
Joined: Jan 2010

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
Posts: 337
Joined: Nov 2014

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?

 

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

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.

jason.2835
Posts: 337
Joined: Nov 2014

Allochka,

I agree that now we are much more "in tune" with everything going on with our bodies.  Aches and pains that I've probably had for years are now "weird."  I think what you're saying is "chill out" haha 

tyjsbtn
Posts: 50
Joined: Sep 2014

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Stage 1 and stage 2 patients will no longer have "mysterious" aches and pains that are mets. All aches and pains are only reminders to take care of yourselves.

jason.2835
Posts: 337
Joined: Nov 2014

Fox,

I know, I know. Paranoid. I'm just thinking why wouldn't the doctors want to get a baseline on what I look like before anything else happened? I got cancer at 35, I think I have somewhat of a right to be a LITTLE paranoid haha. 

angec's picture
angec
Posts: 924
Joined: Mar 2012

LOL, I like that post, Fox!  Good advice!  Hoping your aches and pains are getting less and less! ;)

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Myrtle Beach? I know the biker bars.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

You're speaking my language, Foxy!

LesliePeters's picture
LesliePeters
Posts: 17
Joined: Dec 2014

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
Posts: 337
Joined: Nov 2014

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.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I would just be crazy if I didn't choose the helmet option! Myrtle Beach wouldn't know what hit them!

DSFrey
Posts: 69
Joined: Jan 2014

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.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

jason.2835
Posts: 337
Joined: Nov 2014

Fox and DSFrey,

This is the main reason I am being more aggressive in my thoughts on follow-up care... What you've guys have said and been through.  If I hadn't found this forum I probably would just be going along with whatever the doctors say... As you said above, they base everything on statistics and the problem with RCC is that statistics can often be thrown out the window.  

And, DS, if the doc tells me "that's it!" at my 3 month check-up, I may punch him.  That won't be acceptable.  We are cancer patients.  That's the way it is.  I can never live life the same way again.  I just can't.  I can NEVER put it out of my mind.  Impossible.  I'm glad you pushed to get more follow-up care. 

angec's picture
angec
Posts: 924
Joined: Mar 2012

What did the Ultra sound show? Do you have gallstones?  If you continue to have pains and it isn't from the surgery or part of your recovery, then i would insist on at least a cat scan with contrast.  Do you have any issues with your back as far as discs are concerned?  One thing that is very common, is that once a person has or had cancer, every pain is a new worry.  I hope they give you a scan just to put your mind at ease.  I am also not really sure that there is no scarring or adhesions with your surgery just because the incisions were small.  All surgeries can result in the same.  My sister in law had a small one inch incision and she had adhesions. The surgery wasn't too long ago, can it just be healing?  Hope you find your answers and that you feel better soon! Glad they caught it early.

Jmat23's picture
Jmat23
Posts: 23
Joined: Mar 2014

In my efforts to stay hydrated I used to drink excessive amounts of water. Water toxicity requires you to drink a very large amount of water. While I wasn't drinking enough for that to occur I have this theory that I was still drinking enough water to dilute my electrolytes and cause minor muscle cramps/spasms and odd pains here and there. As soon as I cut back (I still ensure I drink enough water), these pains went away. Maybe it's all in my head but I do know kidneys regulate electrolyte balance so having only one may mean it's easier to throw electrolytes out of balance via excessive water consumption. Theory is not based on any literature I've read but just what works for me! Wonder if anyone else has found yhis? ahhhh what a strange thing these psychosomatic pains are. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Have you considered substituting beer for water?

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

There's a suggested protocol for following up and I don't think it's "do nothing" even for Stage 1. I'd make sure you are at least getting the standard of care.

I posted a link to the national cancer institute's suggestion for follow up according to Stage/Grade for RCC. If you search for it, you should find it. Get the document (it's a PDF) and have a look. Make sure your doctor is following at least that.

Are you seeing an oncologist that is familiar with RCC and the guidelines? If not, I'd try to find one. If that's not an option, I hope you at least have a doc that won't mind be educated by you if they don't know what the minimum standard of care is.

What imaging tests did you have done in September?

As a baseline, after my nephrectomy was removed, I had a nuclear bone scan, and a CT of my chest, abdomen and pelvis. Since then for the first year I had CT's of my chest, abdomen and pelvis every 4 months then at 1 year, I had them every six months. I'll do that until 3 years, and the switch to annualy to 5 years. But I was Stage 3.

It is true that at Stage 1 and Grade 2, you're probably looking at a low probability of recurrence (something like 5%), but that is not 0. Even 5% is a 1 in 20 chance. You should be followed, particularly the first 1-2 years.

I'll look for the link and see if I can copy it here again. It's a PDF that's available. The website is for doctors, but it allows patients also to join and get access. Have a look. At least you'll have something in hand that will back you up to get a little better/closer look at you if you want it. This is part of the reason I joined an adjuvant study, to get followed more closely because I was Stage 3 (closer to 40-50% chance of recurrence).

Best,

Todd

jason.2835
Posts: 337
Joined: Nov 2014

Todd,

I have sen the NCCN website and signed up for it.  In my case the follwo up care is pretty much left to the doctor after 1 year.  I had an abdominal MRI that verified the ultrasound that initially caught the RCC back in September and I have another ultrasound scheduled for March... but no other type of imaging test that I know of yet.  My follow up with the urology surgeon is in March after I get a full blood work up and the ultrasound.  I was going to ask about one big imaging test because I have never had my chest, bones, head or anything above my ribcage looked at and I should think that I should to at least RULE it out... I know alot of stage 3 and 4 patients probably think I'm being a bit of a baby, but as I said originally... I just want peace of mind that nothing else is going on.  Thanks for all the info.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Check out this post:

http://csn.cancer.org/node/288735

Subscribe to Comments for "Should I Seek Peace of Mind?"