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Stupid questions, but ...

DSFrey
Posts: 69
Joined: Jan 2014

In 2 weeks I have an appointment with an oncologist. The appointment was made back in June after my first visit to this oncologist. That initial visit lasted for maybe 30 seconds at the most. He simply asked me if I was receiving follow up care and when I told him I was by my urologist he simply set up this appointment for reasons I'm really not clear on. It was like he was basically saying let's talk in 6 months. Just 2 days after that visit my urologist told me that based on my 3 month post-op CT scan and the pathology of my cancer that I wouldn't need any further follow up and he released me. The urologist didn't know I had seen the oncologist, that was all set up by the urging of my GP. So now I'm wondering if I should just cancel this appointment since I feel like I could just be wasting the oncologist's time, or should I keep it thinking maybe the urologist wasn't experienced in RCC follow up care and released me too soon. If I keep this appointment what are the kind of questions I should be asking without making me seem like a hypochondriac?

icemantoo's picture
icemantoo
Posts: 3244
Joined: Jan 2010

Your urologist thinks you do not need any further follow up. The Oncologist is a fresh set of ears and eyes. He could agree, not agree or discus it further with the Urologist after I assume you give your consent. Given that this added opinion is already in the pipeline follow thru. Now is the time for you to ask whatever question is on your mind to the Oncologist. Take advantage of the opportunity to do so.

 

Icemantoo

jason.2835
Posts: 337
Joined: Nov 2014

Firstly, if your doctor is making you feel stupid for asking questions you need to a) snap him or her back and remind them that YOU are the one who survived cancer and needs guidance or b) find a new doctor.  

That being said, I think I recall talking to you last week; no one has basically told you anything.  This is a doctor who specializes in cancers, so I would think that would the best person to answer any of your questions, even if they are brief answers... bring whatever reports you have (pathology, whatever you have) and ask them to translate.  Tell them no doctor has really talked about your cancer type (even if that's not true) and you'd like an outlook on your "5-year survival rate."  It's cool if they think follow up care is minimal, I guess that's a good thing, but everyone should have some information on what they HAD, even if they don't HAVE it anymore.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Based on American Urology Association followup Care for Renal Cancer for low risk patients (pT1, N0, Nx):

1)Abdominal imaging (US, CT, or MRI) may be performed yearly for three years in patients with low risk (pT1, N0, Nx) disease following a partial nephrectomy based on individual risk factors if the initial postoperative scan is negative.(Guideline Statement 10)

2)the Panel recommends that patients with a history of low risk (pT1, N0, Nx) renal cell carcinoma undergo yearly chest x-ray (CXR) to assess for pulmonary metastases for three years and only as clinically indicated beyond that time period(Guideline Statement 11)

you can read other statements in the below link:

https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

 

 

DSFrey
Posts: 69
Joined: Jan 2014

Yes I've seen this. It's like my urologist was  following the recommendation for making abdominal scans optional, but completely went against the recommendation for annual chest x-rays, as that was never mentioned in my follow up care. He may have been using older guidelines I suppose. His opinion was I was cured and done with it. I guess I should bring that to the attention of the oncologist and see what he thinks.

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

DS - this enrages me that the medical doctors are just dismissing you. You need follow up care. Yes, sometimes the nephrectomy alone is the cure. But in many cases it comes back! Please go for your scans and go for follow up care. You had cancer. You are not a hypochondriac. Ask the oncologist what the standard maintenance is for monitoring your kidney health. If you have any pain or aches or any concerns, please bring them up. You are not a bother - you are worth it!!

Hugs

Jojo

aamdsi
Posts: 284
Joined: Apr 2014

My Dr. said I was "cured" too, then set up a scan for 6 and 12 months since he just wanted to make sure I stayed that/this way.

As for sounding like a hypochondriac, I somehow think that any question you ask is worthwhile.  We don't know how we are to feel, what is normal or not normal now.  So any info. you get will be useful.

Plus, seeing the Dr. and getting another, "All's well", reading can only make your day!

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I think you should be followed for 3 years at least and you need some kind of periodic scans (whether it be chest x-ray and CT of abdomen/pelvis, or CT of all three). Not sure about the period, etc., but ask the oncologist. Urologists don't provide care for recurrent cancer. In my opinion, their motivation is somewhat low and they tend toward the "I cured you" attitude. Urologic oncologist are slightly better in this regard and seem to take the follow on scans more serious.

I remember you had a partial nephrectomy and I think you were Stage 1? What grade was your tumor? Did you have clear cell RCC?

The chances of recurrence are not 0. I believe even Stage 1 Grade 1 has somewhere around a 5% rate of recurrence (maybe 3 maybe 7%). So it's not likely, but the odds are not worth ignoring. That's a 1 in 20 chance. If it comes back, you want to catch it early if possible and waiting until you have symptoms show up to catch it, is not a good recipe for finding it early. The earlier you catch it, the more likely you might be able to be cancer free again with another surgery. The odds are higher with more agressive grades and some other subtypes of RCC.

Looking after your health does not make you a hypochondriac. This is a very serious illness. It makes perfect sense to pay attention to it.

Hope you keep the appointment. I hope the oncologist takes your follow-up care more seriously than your urologist did. I'm not a doctor, but I don't think you should have been cut loose from observation so early. In 3-5 years, the odds go down quite a bit. The first 2-3 years have the highest rates of recurrence showing up.

Please let us know. :)

Todd

donna_lee's picture
donna_lee
Posts: 924
Joined: Feb 2009

There are no Dumb Questions.  That said, you just plain need more information.

Anyone who has one kidney definitely needs to have blood pressure monitored, plus all the other standard labs in a CBC and CMP.  No matter what Stage the original cancer diagnosis.  Do you have a Primary Care Physician, or is the Uro/Onc. supposedly taking care of this monitoring?

I went to a major teaching hospital for my surgery with 2 specialists in what they did: Urologic/Oncologic surgeon for the kidney, and a Thoracic/Oncologic surgeon for the mets to the liver.  When finished, I was turned over to my local oncologist, whom I still see every 4 months; and my PC, who is just now stretching my appointments out to every 6 months.

With CT's at first every 3 months and then stretched to 6 months, they were able to catch two recurrences in the first 2 years.  Now, I have a Chest X-ray with an abdominal and pelvic ultrasound about every 6 months and if there is anything symptomatic or odd, I have a full CT.

Go in there with a list of questions on paper and make sure you come out with notes jotted after each one.

We're cheering for you and know you can do it.  Take care.

Donna

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

Make the appointment and keep up regular monitoring.  I was stage 1B grade 3.  I am not taking my good fortune for granted.  I got 3 scans in the first year and I am now on a yearly recheck.  Dont take no for an answer just do it and forget the rest.  Good luck.

 

Jack

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