Scanning.

Jan4you

Have shared your opinion with

Have shared your opinion with your surgeon? Is this your idea? Or as part of your protocol, you have completed the required scans?

I mean, i am finished with scans for this period of my 5 year follow up protocol.

I do get chest x ray and labs and see my urologist every year now. 

Jan

CRashster

2 stories.

Both of these stories are perfect examples of what I'm talking about. One person didn't scan and still had cancer, one person scanned and didn't. If Jan didn't scan, would the outcome be different? Also, if the first person had scanned, would they be cancer free? It seems a roll of the dice. It's also interesting that both are over the 5 year follow up protocol.

APny

" Also, if the first person

" Also, if the first person had scanned, would they be cancer free?" Perhaps. We have someone on this forum who had a met to his lung, they found it, removed it, and he's been NED since. As for your question regarding Jan, if Jan didn't scan her outcome would be the same. No cancer. The scanning doesn't alter the outcome for anyone whose cancer doesn't return or spread. It only alters the outcome for those whose cancer does return and/or spread.

stub1969

Ultimately

It's in the hands of the patient.  All of us are different.  Different in how we handle a cancer diagnosis, how we adjust to our new life, and how we go about living a life with or after cancer.  I've been sitting back reading and reflecting on both sides of this topic.  I'll freely admit, I'm not at the point that Fox talks about, "looking forward to scans.".  I don't like them...period.  But, for my peace of mind and for the peace of mind of my loved ones, I'll continue to follow-up with regular scans.  Although I don't agree with CR, I know he has put a lot of thought and research into the position he is willing to take.  I'm sure he has also involved the people that love him and support him with this decision.  I respect that; as we all should. 

That's my two cents.

Stub

lobbyist0724

I guess we have to understand

I guess we have to understand what is considered a "come back". For the stage 4 patients, they have "Clinical evident" of metastases since diagonosis. For all others who were told "clinically cured", but microscopically "might" not! For small mass, chance is small, but for larger or more agressive tumors, chance is bigger. The scan allow one to catch it early when one already have microscopic metastases (it is a done deal based on the surgery date, but no body knows for sure). For the other lucky ones, yes, they don't require any scan since there is no microscopic metastases. So if one can tell that she/he doesn't have microscopic metastases, then there is no need for scan at all!

Problem is that there is no way for you to distinguish yourself between the two, so we can only follow the recommended schedule to try to catch it early "if and only if" we want to catch it early.

The decision is very personal, some like to make sure they'll find food while they still have the energy and before they get hungry; but some might decide to wait until they get extremely hungry then will start to find their prey. Some wanna be on top of things and some might say let's put it behind and will deal with it after it comes back. There is no right or wrong answer but there will be no room for regrets for this matter.

I personally choose the more rigourous schedule than recommended since I wanna be with my little ones as long as possible, watch them grow up, be there for them when they need me.

Wish you all well! Carmen

CRashster

I'm reconsidering.

I've read every post and I appreciate everyone voicing their opinion. I've also enjoyed the conversation. I'm going to have long talks with both of my docs, although I know what their answers will be. Thank you all.

Kat23502

stub1969 said:

Ultimately

It's in the hands of the patient.  All of us are different.  Different in how we handle a cancer diagnosis, how we adjust to our new life, and how we go about living a life with or after cancer.  I've been sitting back reading and reflecting on both sides of this topic.  I'll freely admit, I'm not at the point that Fox talks about, "looking forward to scans.".  I don't like them...period.  But, for my peace of mind and for the peace of mind of my loved ones, I'll continue to follow-up with regular scans.  Although I don't agree with CR, I know he has put a lot of thought and research into the position he is willing to take.  I'm sure he has also involved the people that love him and support him with this decision.  I respect that; as we all should. 

That's my two cents.

Stub

While I absolutely disagree

While I absolutely disagree with the sentiment of skipping scans, I agree that everyone is entitled to their opinion and should be supported. I also feel as if this post has run its course and should probably be done now. He has made a decision, some have voiced concern and some have voiced support. I think now it's time to support a member not a decision (if we don't agree) and move on to doing just that. 

Kat23502

CRashster said:

I'm reconsidering.

I've read every post and I appreciate everyone voicing their opinion. I've also enjoyed the conversation. I'm going to have long talks with both of my docs, although I know what their answers will be. Thank you all.

I'm so glad to hear you will

I'm so glad to hear you will be talking to your doctors to help make your decision. 

APny

lobbyist0724 said:

I guess we have to understand

I guess we have to understand what is considered a "come back". For the stage 4 patients, they have "Clinical evident" of metastases since diagonosis. For all others who were told "clinically cured", but microscopically "might" not! For small mass, chance is small, but for larger or more agressive tumors, chance is bigger. The scan allow one to catch it early when one already have microscopic metastases (it is a done deal based on the surgery date, but no body knows for sure). For the other lucky ones, yes, they don't require any scan since there is no microscopic metastases. So if one can tell that she/he doesn't have microscopic metastases, then there is no need for scan at all!

Problem is that there is no way for you to distinguish yourself between the two, so we can only follow the recommended schedule to try to catch it early "if and only if" we want to catch it early.

The decision is very personal, some like to make sure they'll find food while they still have the energy and before they get hungry; but some might decide to wait until they get extremely hungry then will start to find their prey. Some wanna be on top of things and some might say let's put it behind and will deal with it after it comes back. There is no right or wrong answer but there will be no room for regrets for this matter.

I personally choose the more rigourous schedule than recommended since I wanna be with my little ones as long as possible, watch them grow up, be there for them when they need me.

Wish you all well! Carmen

Censorship

 

Has nothing to do with the topic and sorry for the slight thread jack, but I notice that lately the word “a$$” has been censored to the point that we can’t even type amba$$ador (in another thread) or ma$$ (lobbyist's post above) without it being removed and replaced by stars. It’s kind of silly on an adult forum, IMO. If someone needs to mention the size of their tumor and refers to it as a ma$$ I don’t see the need to censor it to where we see something like “my m*** was 4 cm.”

 

Jan4you

To clear up my post: CR you

To clear up my post: CR you misunderstood MY response.

I AM following all the criteria for the required 5 years post RCC Nephrectomy.

I no longer are REQUIRED any more scans but still do the labs and lung xray. AND he follows up on any signs/symptoms.

I have past 3 years of the required 5 years for my case.

Jan

todd121

Scans

Kidney cancer doesn't seem to be like the others in terms of the odds going to 0 after 5 years. I know several people personally that had Stage 1 that returned after 10 years. Personally, I'd never stop with annual scans because of those people I know that have had this. One friend of mine just had a recurrence in her lung this month after 10 years of NED and she was stage 1. They found it on an annual scan and she just had it resected.

The thing is, if you get a recurrence you want to catch it early when it might still be operable. Once symptoms show up and you have it in multiple places (or in a single place where it's gotten big enough not be operable), then your only choice is systemic treatment with drugs. That can keep you stable for a long time these days (especially by switching) but those treatments are not cures yet and many/most of them have side effects that are not pleasant.

You didn't mention Stage/Grade. Increases in either/both increases your odds of recurrence. But even a low Stage/Grade fully contained has something like a 2-5% chance of recurrence over time (also depends on type of RCC, could be higher).

I wouldn't advise going with "wait until I get symptoms" as the way to follow-up no matter what type of RCC I had, but it is up to you, of course.

I had a single tumor, Stage 3, grade 3. I had a recurrence caught by scans 2 years after my nephrectomy. I'm on a 3 month scan schedule now and my oncologist, who is an RCC specialist, insists I stick with this frequency even 2 1/2 years after my last recurrence.

Todd