Questions after 2 wk followup

Hi Kim, that report sounds

Hi Kim, that report sounds like a great one!  Happy for you.

As far as the follow up.  I always say to get a full body ct/petscan. This scans from head to toe and bones as well. Now, with your low grade and small size they will not want to do it. But, if you insist that you want it, then maybe they will allow it. Definitely see an rcc oncologist.  Do all the right things and keep your mind at ease. Do get copies of every single test and report for your files.  Looks like you will be fine!   Enjoy the spring and summer.  Oh, and i have not heard of anyone doing a lasix renal gram at all.  Maybe someone else will chime in.  XXOO

My thoughts...

I am happy to hear that it was small, confined to the kidney and only a grade 1-2!  That is really good news!

I assume they are going to do the renal gram to make sure there is no issue with blood flow through the kidney.  This may be related to where the tumor was located and/or how the lesion was resected or this could just be a part of his normal protocol.  My doctor did say that it is possible, albeit rare, for the kidney to stop function after a partial nephrectomy and he went on to say that sometimes they couldn’t find a reason why the kidney died.

I thought I would be having a CT scan at 3 months also, but my doctor said due to my age and the stage of my cancer he didn't want to expose me to that much radiation.  I will have yearly CT scans for the next two to three years.  I asked about a bone scan and he said unless my alkaline phosphatase level was high he would not order one.  I am not sure if there is any connection between the path report and bone scan.  

Here is my follow up protocol at MD Anderson:An initial 6 week lab draw then at 6 months I will have lab work, chest x-ray, and CT then in another 6 months I will have lab drawn and chest x-ray and then in 6 months CT scan.  So I will have one CT a year and one chest x-ray a year.

I too asked about the seeing an oncologist and like your doctor he said that wasn't needed unless I just wanted to.  I choose not to see one, but that's just me.  If it makes you feel better than by all means go for it.  Heck I am sure you've already meet your deductible for the year and it won't hurt anything.

 

Jason

  

jason.2835 said:

Low grade and small = RELAX

Kim,

I had the same concerns.  But my follow up plan is also every 6 months for the first 2 years then yearly after that.  I forget the name of the website, I think it's NCCN, but this is within their guidelines. I don't even get a CT, just an ultrasound (again, within their guidelines).  But my doctor quoted me a 98% chance of recurrence free so basically what they're saying is... RELAX.  I will admit this was extremely hard to do but once you get a couple clean scans under your belt you WILL feel better.  I guarantee it.  

Seeing a different doctor for another opinion is never a bad thing.  But I don't believe, considering that report, that they will recommend that you have a more aggressive scanning plan.  Remember, CTs create radiation that they also don't want to overdo unless they absolutely have to.  

- Jay

You can do what you think you

You can do what you think you should, but you will be fine with such a good path report.

I am out 2+ years, with a radical 4.2cm tumor and i am fine. Part of your protocol includes a blood test that checks signs that cancer cells have appeared abnormally, so know that you are being checked for that as well.

I saw an oncologist ONLY because of this pain I had mid back. It went away and could be related to another condition I have.

So, EnJOY your path to full recovery and a wonderful life ahead!

Warmly, Jan

 

jason.2835 said:

Low grade and small = RELAX

Kim,

I had the same concerns.  But my follow up plan is also every 6 months for the first 2 years then yearly after that.  I forget the name of the website, I think it's NCCN, but this is within their guidelines. I don't even get a CT, just an ultrasound (again, within their guidelines).  But my doctor quoted me a 98% chance of recurrence free so basically what they're saying is... RELAX.  I will admit this was extremely hard to do but once you get a couple clean scans under your belt you WILL feel better.  I guarantee it.  

Seeing a different doctor for another opinion is never a bad thing.  But I don't believe, considering that report, that they will recommend that you have a more aggressive scanning plan.  Remember, CTs create radiation that they also don't want to overdo unless they absolutely have to.  

- Jay

Agree with Jay, here.  While

Agree with Jay, here.  While some here will say that ultrasound scans may have missed (or did miss) recurrence, I pressed my doctor at Memorial Sloan Kettering on ultrasound versus CT scan.  My surgery was in July 2014, and I have received only US and a chest Xray every 6 months, and at 2 years, I will go to annual scans and chest x-ray.   When I pressed my doctor, he said that I am in the lowest category for recurrence (2.9 cm/partial neprhrectomy), and that they are confident US will detect any recurrence and they did not see the need to expose me to further radiation.  While part of me wants more certainty and peace of mind, I have to go with the opinions of the experts and what my insurance will pay for.  At 6 months post surgery, they did a NM KIDNEY SCAN (RENAL) W/DIURETIC.  Glad to hear your good news.

APny said:

That's a very good path

That's a very good path report and I'm happy for you. My partial was at Sloan K also, in fact had the same surgeon as Positive_Mental. He's a urologic oncologist. I think I would prefer that over a urologist. I don't think a medical oncologist is necessary given your path report and many will not accept patients unless they have active cancer. But if you could see a urologic oncologist also that may not be a bad thing. My protocol is same as PM's. Ultrasound every six months along with chest x-ray and blood work. Bone scans are not routinely done unless you're symptomatic, and your calcium levels are elevated. The chance of bone mets with a small stage 1, grade 1-2 tumor is extremely small. That said, your protocol should be whatever you're comfortable with. If I were not comfortable with mine I would insist on CT scans and a bone scan.

most importanly

you are aware of something that will be monitored. You have a great prognosis and will benefit from close follow up for many years to come. In other words, having been diagnosed with cancer may have saved your life because it is not likely that anything will be sneaking up on you undetected.

donna_lee said:

Agreed then...

you have signed a contract (in blood) to be monitored for all sorts of things for the rest of your life.  Carry on, and all best wishes with the wonderful path report you received.

donna_lee

Congratulations Daisybud

That is a great path report. I hope you went out for a coffee afterward to celebrate. We always stop for coffee or lunch, depending on time of day, whenever I have a doc appt or test. It gives me something positive to look forward to on that day which is usually fraught with anxiety. Yeah, we all have the anxiety, so don't feel bad if you do. As others have said, it does get better with time, but does creep back around the day of appt or test.

As far as your question to see an oncologist, if there is an urologic/oncologist in the practice you're going to now, why not ask if you can see him/her. Its in the same practice so they'll have all your records. It might make you feel better to know at least you got that opinion.

Bone/pet scans are not routinely done for stage 1 cancer, unless for some reason a blood test is indicating something is wrong or you're having symptoms. So rest assured your doc is doing what all of ours have done as far as that goes.

At 7 years out, I now go yearly for a chest xray and U/S along with bloodwork.  I also still see the urologist who did my surgery once a year and they do bloodwork and an u/s on my remaining kidney right in the office. i alternated between ct scans and ultrasounds for the first 5 years, always with either a ct scan of chest or chest xray. I do wonder sometime if the u/s will pick something small up, but I trust my oncologist when he says he doesn't want to expose me to anymore radiation. I have read on this topic and that's the standard thinking. 

Good luck as you continue your recovery. And again great news on your report. 

daisybud said:

Thanks for all the great

Thanks for all the great info. This site is wonderful and the people are so caring and helpful!

Corey do you mind me asking what stage and grade you were?  Its wonderful that you are 7 years out!  I am so happy for you. 

I am guesssing that I will be watched with scans and labs for the rest of my life?  I did see that some people are finished at 5 years.  I would prefer to be watch forever...  Would def make me feel better.

Kim 

I don't intend to stop being

I don't intend to stop being monitored. With this disease (RCC) there's no room for complacency, regardless of stage or grade.

A Lasix renal scan is

A Lasix renal scan (also called a MAG-3 Renal Scan) is a way to measure urine flow through the kidneys to compare the intact kidney with the partial kidney in terms of % of function and speed of producing urine. It is a nuclear-medical scan, not a radiology or CT scan. It is not a test for cancer mets (as a stage 1 patient, you'll get that at your 6-month CT). 

 

The Lasix renal scan is a non-invasive scan that introduces a radioisotope to track urine flow. The half life (basically that is the length of time it stays in your system) of the radioisotope is pretty low, but you should not hold pets or small children for a period of time following your test to avoid exposing them unnecesssarily to the radioisotope--confirm this with the tech who does your scan.

 

Many of the people on this board have not had a Lasix Renal scan because they had a higher stage and grade of tumor than you, therefore  their follow-up protocol is very different than yours will be. The risk of mets is higher for them than it is for you. That is why you see them receiving frequent chest CT's, PET scans, and other imaging that you probably will not receive as a stage 1 patient. The follow-up for stage 1 patients involves fewer CT's (radiation exposure) over a shorter time span than those with higher stage tumors. Basically, your main risk---and a very low one at that--- at this point is renal insufficiency (hence the need for the renal scans).

 

Connecting with an oncologist who specializes in kidney cancer is not necessarily over-kill (I went to one to make sure I was getting the correct follow up), but be prepared to hear (the good news) that your CT, chest Xrays, blood tests, and Renal Scans will be annual for 3-5 years only. 

 

Congrats from a fellow stage 1 patient. You have a bright future ahead!