Gratefully at 7 year mark but onc has question....
 

Seeing a new oncologist. My wise, senior onc has moved some distance. When I last saw him he basically said " you're cured, go life your life"
So this new one starts talking about random cancer cells laying dormant and then causing a recurrence. Maybe many years later ( thanks a lot!) but always a concern. He is asking me if I want any scans even though I am symptom free. I told him the last time I had a scan, I ended up having part of my lung removed because of false positive results. Everything lights up, even benign things
Then he alluded to malpractice if he didn't offer scans. I told him I didn't sue anybody for the lung screw up so I'm not too litigious
My question: do you suggest routine scans? I have never had them and don't particularly want to look for trouble when I am symptom free
Keep the faith

Re: Gratefully at 7 year mark but onc has question....
 

As someone once said Scanxiety sucks . It has only been 6 months since my Dx so for now I'm pro scans every 6 months, but pending all is clear for the next 2 years then I will change to having my scans done once yearly. You have to do what you feel comfortable with. I can only imagine what you must feel like after being misdiagnosed once already because of false scans. Just remember don't ever have to ask your self What If and never be sorry for your decisions that you make on regards to your txs after all having the Dx of cancer is difficult enough.

Re: Gratefully at 7 year mark but onc has question....
 

No Bonnie, I only request them when I have a pain or lump that doesn't clear up within a month and then my Onc will order scan's, its only happened once in nine years and thankfully all was clear.

Re: Gratefully at 7 year mark but onc has question....
 

I think I'm with Tricia on this one. I had one concern that we followed up with scans, and all was clear. I'd employ the two week rule; if something bothers you for two weeks without improving, consider getting it checked. Otherwise I think I'll just try to stay tuned in to my body and not worry myself to death with scanxiety. QOL has value!

Re: Gratefully at 7 year mark but onc has question....
 

I'd go with what your old onc said ... and the two week rule above! If he hadn't left, this wouldn't even be an issue. Your new onc is playing CYA. (Or, rather, CHA! :))

CA

Re: Gratefully at 7 year mark but onc has question....
 

Congratulations on 7 years!! I would go with your first oncologist and not worry about getting scans. My oncologist...at a major cancer hospital in Seattle...never believed in routine scans!!!

Re: Gratefully at 7 year mark but onc has question....
 

Congratulations Bonnie on the 7 year mark! You've lived comfortably with the advice of your first onc for quite some time, so no need to change that. And as others post here, if you are worried about something that doesn't go away in a couple of weeks, then maybe get it checked. I see from your signature that following original dx you received the 1 year of Herceptin, and you know we are now seeing the success of that strategy here more and more.
Best wishes Marie

Re: Gratefully at 7 year mark but onc has question....
 

Dear Bonnie,
The message here seems clear - why look for trouble? If you are feeling well, the likelihood is that you are well, and you have already had experience with false positives. Congratulations on 7 years!
Best wishes.... Pam

Re: Gratefully at 7 year mark but onc has question....
 

Contrary to what your new onc says, it's my understanding that there's no reason to do routine scans if you're asymptomatic. According to some studies, that even applies to routine mammography. There's no benefit to catching metastasis early, before it becomes symptomatic. Given the expense of the scans, the radiation exposure, and the risk of a false positive (which you've already been through), it's a dumb idea.

Re: Gratefully at 7 year mark but onc has question....
 

Bonnie,
Ditto! Congrats on 7 years and best wishes for continued wellness!!!
Joanne

Re: Gratefully at 7 year mark but onc has question....
 

Joanne, is that your work? It's stunning! I'm also an artist and wonder if I have seen your work in national shows?

Everyone, thanks so much for the reinforcement. I thought my new onc was off base too
Time to shop for another....
Keep the faith

Re: Gratefully at 7 year mark but onc has question....
 

Bonnie, Oh I wish - I found the watercolor image on the internet and fell in love with it.
I also found a link associated with it.
http://www.artistsnetwork.com/articl...iques/wcpetals
I'd would love to see your work Bonnie. <3
I have an amazing artist friend in Oregon. When I went to visit her last year, I had lots of fun playing with Alcohol Inks. (If you're interested, you can check out her blog: http://chrislally.blogspot.com/ )
Hugs, Joanne

Re: Gratefully at 7 year mark but onc has question....
 

The dogma that there is no need to scan when asymptomatic was developed when they thought breast cancer was ONE disease and that everyone died within TWO years of diagnosis of Stage IV anyway, whether they gave monotherapy, combined therapy, sequential therapy or dose-dense therapy.

That wasn't so long ago (remember going to a state-of-the-art conference in 2005 where that tune was hummed repetitively)

Noone knows whether finding oligometastatic disease earlier in nonher2+ bc allows cures. Dr. Hortobagyi wrote articles suggesting they try to find out around the same time.

Now that treatment has changed noone has come out with a subtype specific study. As long as new treatments keep coming available for her2+ bc it will be hard to do these, but a we get closer and closer to making this a treatable chronic disease it MAY turn out that finding disease when it has not yet outgrown its blood supply so radically and started expressing HIF-1 (in response to hypoxia) may make a substantial distance in terms of OS and perhaps even cure.

That is why I continue to advocate they add bone marrows to clinical trials to see if they can determine who is more likely to turn to Stage IV, if they can intervene to prevent that and whether treatment given so far has been effective (and if the mets have "changed their colors" ie are now of a different ER pR or her2 status. Susan Love onced Poo-pooed the idea, but now that she herself has had leukemia is now willing to add it to her recommendations of
samples gathered for trials.

If they don't look, they can't find.

Off the soapbox for me now.

Bottom line of getting scans---from my reading and conference attending it seems they really don't know whether or not they should, because they really haven't relooked at the issue of whether getting routine scans would make a difference in OS now that they are dividing bc into subtypes.

Re: Gratefully at 7 year mark but onc has question....
 

How wonderful! Gods blessings to you and your family. Thank you for always being here. You are so appreciated!

Re: Gratefully at 7 year mark but onc has question....
 

Thanks Lani!

Re: Gratefully at 7 year mark but onc has question....
 

I told my oncologist about the discomfort below my right ribs - turned out to be harmless hepatic hemangioma. But it proved that I wasn't dreaming about things or being a hypochondriac. Routine scans can be misinterpreted - such as the case of my recurrence being missed for three (almost 4 - had I not contacted the original surgeon for scans) years because doctors had thought it was 'scar tissue'

Having had so many surgeries, I kind of know whether or not I am healthy. The alarming signs had always been: weight loss, skin problems, unexplained fatigue ...

New doctors seem to be more willing to do something to get an overall picture.