CSN Login
Members Online: 6

You are here

Good news as long as it holds true

DSFrey
Posts: 69
Joined: Jan 2014

After just having a single follow-up ct scan 3 months after my partial nephrecetomy, my urologist today told me I was certainly cured and that any more scans were completely optional. He did schedule another one for next June but told me it would be quite ok to cancel it if I still felt ok at that time. And so with that I guess its time to close the door on this part of my life and move on to other concerns. Good luck everyone.

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

 Awesome news DS Frey!Smile Wishing you well. Melissa

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

DS,

 

While the odds are strongly in your favor for a full recovery their have been stories of recurrance or spreading even with small tumors.

Keep the follow up going as long as your insurance company will pay for it..

 

Icemantoo

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Dude, that urologist you have is pretty lame. I was told after my T1A got clipped off last May that I need 2 years of 6 month scans then once a year (likely ultrasound) til year 5 then hope its ok after that. The whole thing is....nobody knows whats going to happen. I'd get at least 2 more if I were you. Since most are caught accidently there was no pain ever really there, whats he talking about?

DSFrey
Posts: 69
Joined: Jan 2014

I did also see an oncologist last week and while he said I didn't need his services since the urologist was doing my follow ups he did schedule me to see him again in 6 months in case the urologist didn't want to continue the follow ups. So I guess I'll see the oncologist in December and see what he says for certain.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

DS I wholeheartedly agree with the other comments. The likelihood of reoccurrence is very small but the risk is still there. My first tumour was stage I grade 1 at just 2 cm, I had a reoccurrence on the site several years later. The second tumour was stage 1 grade 3 of which I had a reoccurrence 8 months later. It is far better to err on the side of caution.

All the best to you and I am glad everything turned out well!

 

Djinnie x

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Here is my take.  Yes, that Oncologist is sending a good message, I think..  First yes you need the follow up, "just in case."  But he / she does not need to do it.  This may sound odd, but a good Oncologist has plenty of patients with Mets.. usually more than they can handle.  So, if you have a competent Urologist, that follow up is fine, besides the Radiologist is the first one to spot anything suspicious on the scans.   However, your Oncologist is also saying.. he / she is there for you.!  Odds are you won't need that Oncologist ever... but.. knowing he/she is there for you, hopefully provides some comfort.  Good Luck..!!!

Ron

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

Hi DS,

First of all congratualtions on the good prognosis :-)

Your urologists approach however seems out of sync with common practise. I have never heard of anyone before being advised to "flip a coin" when it comes to follow-up scans. Even at low recurrence risk the standard is minimum a 2-3 year follow-up scheme.

The risk, in your case, of recurrerence is very very small, but its still there nonetheless.

/G

APny's picture
APny
Posts: 1984
Joined: Mar 2014

Great news, but I'm with everyone on this. Continue with follow ups even if just once a year. Most likely you'll be fine with no further issues from it but there's always that small chance that I wouldn't want to take.

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

I agree with everyone else, DS. Continue with as many scans as you can. Please!

 

 

4thstagercc's picture
4thstagercc
Posts: 3
Joined: Mar 2013

I think your Urologist should stick to what he is trained to diagnose and treat, although very positive uplifting, I am confused at his choice of words "cured"  Have heard of RCC tumors being frozen and then it is a wait and see type deal.   As far as I know currently, there is only one way of curing renal carcinoma (kidney cancer) any stage, at least that is what our Drs at UHOP have told us with 4th stage RCC with METS.  You need to follow the pros who have actually tried this method, which as far as I know, is not practiced in Philadelphia, closest is Pittsburgh PA  There is a brand new clinical study on 3rd phase/humans that is very promising and after completion of this clinical trial will hopefully be approved by FDA soon, which certainly sounds like could be another less-evasive possible cure.  Havnt followed you so not sure if you had PET scans done, although usually doesn't detect kidney tumors, but usally finds the usual suspects where they MET, ie. kidneys, lungs, femurs, pelvic etc. I agree with all others that you should be proactive and if you don't have a team of RCC Drs get at least one immediately that you trust and follow his instructions.

4thstagercc's picture
4thstagercc
Posts: 3
Joined: Mar 2013

JKNORTH should be your go-to guy on this site

a_oaklee
Posts: 523
Joined: Nov 2013

DSFrey.   You know I have been reading and commenting on a few of your posts.  And I am just so happy for you that you received this good news.  Congratulations.  I think it must be a huge relief to be given this news and to give your mind a rest from  all the worries for awhile.  Best wishes.  Enjoy the summer.

Annie

Karen0074
Posts: 64
Joined: Apr 2014

Yeŷ good news. Keep on scanning xx

Subscribe to Comments for "Good news as long as it holds true"