Should I Seek Peace of Mind?

jason.2835 · January 2015

foxhd said:
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.

My Sentiments Exactly

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.

Jojo61 · January 2015

foxhd said:
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.

Foxy

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

angec · January 2015

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.

LOL, I like that post, Fox!

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

angec · January 2015

What did the Ultra sound

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 · January 2015

Niggling pains and too much water

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 · January 2015

Jmat23 said:
Niggling pains and too much water
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.

Too much water

Have you considered substituting beer for water?

todd121 · January 2015

Follow Up Protocol

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

todd121 · January 2015

NCCN Guidelines for Follow Up Care for RCC

Check out this post:

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

jason.2835 · January 2015

todd121 said:
Follow Up Protocol
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

Thanks!

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.

Should I Seek Peace of Mind?

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