[hutchibk]

Debra - conventional thinking is stuck in mud right now. There are many old school, or simply NCCN guideline following docs, who still believe that regular scanning and monitoring is a waste of time, money, a psychological drain on the patient, etc. There is also a school of old thought that believes that it is appropriate to wait for symptoms and then treat, as opposed to finding a recurrence in it earliest stages, as well as the belief that finding a recurrence earlier hasn't been proven to offer any better or longer survival chances or improve quality of life. If that were true, then how can the case be made for "early detection" to begin with? Why would we even do mammograms to begin with. It is a hypocritical stance.

Thankfully my doc and I agree that is all total hogwash. Many forward thinking and visionary oncs these days also think it is hogwash, hallelujah!

Having HER2 cancer is reason enough to be very vigilant. It is aggressive and opportunistic. The earlier you find it, especially before any symptoms, the healthier you are apt to be, and the easier it is to tolerate what ever they need to throw at it. You will notice that many of us here are metastatic patients and are tooling along at a pretty fine clip - tolerating lots of different treatments to slow it down and knock it back, year after year after year. If our mets had been found only after symptoms, then I can promise you some of us would not be having the success and quality of life we continue to have. It is a matter of staying ahead of this disease... never give it a leg up if at all possible.

Based on a true story, here's a case that describes how horrible it can be to wait for symptoms: A patient with stage IIb HER2 not followed closely with tumor markers or scans of any kind once she completed initial treatment. She had "exit" CT and bone density scans at the end of treatment. She sees her onc every 3 months for a clinical check-up. Without any symptoms, the onc follows standard recommendations and does not do any PET or CT as part of her monitoring. Two years out and presumed to be NED, she trips walking up the steps to her front door and surprisingly breaks her hip at only 50 yrs old. It is determined through an MRI that the reason it broke was due to a totally deteriorated hip bone, and it is not only broken, but shattered and completely compromised by cancer in the bone, as well as other spots of bone mets throughout the body. She now faces the challenge of a tremendously painful broken hip combined with radiation and chemo all at the same time. She is confined to a wheel chair for months because surgery is not possible until the metastasis is addressed, if it is even deemed possible at all. She also needs aggressive pain management at the same time she is chemo sick. This is what I call a quality of life issue that could have been completely avoided. Had this bone met been dx'ed through a combination of regular scans and back up tumor markers (or CTC, circulating tumor cells bloodwork) when small and extremely treatable, she would have had chemo (and possibly radiation) and chances are slim to none she would be struggling with a broken hip and an extrememly deteriorated and debilitated quality of life.

In my case, we monitored me very closely. I recurred 14 months out from initial treatment, but it was small we were able to knock it back. We have since found very small recurrences about once every year, and have been able to treat them fairly easily... we just keep responding and changing treatment as necessary to keep a leg up. I have tolerated everything really well. I have a fantastic quality of life for someone who lives day in and day out with cancer. My brain mets were found 18 months ago, asymptomatic, on an MRI. We have been able to knock them back with Tykerb/Xeloda and nothing else until last month when they seemed to "wake up" a little and we then did targeted IMRT radiation on the 5 spots. I can promise you that I would not have had nearly the treatment choices or quality of life that I have had if we had waited for symptoms to dx my brain mets.

It is never to late to start being careful. Sorry if this was longwinded, but I think it is important to illustrate the wrong-minded and archaic thinking of some oncs who don't see the bigger picture.

Our plan was PET once a year, bone scan and CT every 6 months, clinical exams and tumor markers every 3 months. Once I was dx'ed with mets, that all changed, but I was very comfortable with that plan when I finished my initial treatment.