Should I Seek Peace of Mind?

jason.2835
jason.2835 Member Posts: 337 Member

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.  

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Comments

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    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

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    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

    It can not hurt to ask.

    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
    jason.2835 Member Posts: 337 Member
    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

    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?

     

  • Allochka
    Allochka Member Posts: 1,060 Member

    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'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
    tyjsbtn Member Posts: 50
    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

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Allochka said:

    I'm new to kidney cancer, but

    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.

    I agree

    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 

  • foxhd
    foxhd Member Posts: 3,181 Member
    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

    New rule

    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.

  • 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,

    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. 

  • jason.2835
    jason.2835 Member Posts: 337 Member
    foxhd said:

    New rule

    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.

    I know

    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. 

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    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. 

    Howling at the full moon

    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
    foxhd Member Posts: 3,181 Member
    Jojo61 said:

    Howling at the full moon

    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

    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 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

    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
    foxhd Member Posts: 3,181 Member

    foxhd, I am in.  I think you

    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.

    How about

    Myrtle Beach? I know the biker bars.

  • LesliePeters
    LesliePeters Member Posts: 17
    Jason

    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
    jason.2835 Member Posts: 337 Member

    Jason

    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.

    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.

  • 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

    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.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    foxhd said:

    How about

    Myrtle Beach? I know the biker bars.

    You're speaking my language,

    You're speaking my language, Foxy!

  • foxhd
    foxhd Member Posts: 3,181 Member

    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.

    Jojo, helmets or seat belts?

    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
    DSFrey Member Posts: 69

    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.

    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.

  • foxhd
    foxhd Member Posts: 3,181 Member
    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.

    And DSFrey,

    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.