How Often Do You Scan?!!

bloomingdalechik

Hi friends, I was diagnosed Stage IV w/mets to the bone in Feb 2015. 1.5 years later, I'm thankfully stable and currently scanning at 6 month intervals (CT & bone scans). Are there any Stage IV folks out there that are scanning at 12 months? I wonder if I could go that long w/out scanning but would love to hear your thoughts.

Thanks all for the replies! For context, I have mets to the bone (T5 & L2). I've also had a lot of regression in my breast and lymph nodes and my spine appears very stable. But I'm not NED. I first scanned after 3 months, then 4 months, then 5 months, and the last set was after 6 months. It's good to see of you have the same trajectory and it's good to know there are different ways to go. I think I can manage annual scans barring new symptoms and generally not anxious these days, but a year is a LONG time between scans!

exbrnxgrl

Just a quick response, and I hope others will chime in. There seems to be a great deal of variability on how often one gets scans. For the first two years after stage IV dx, I was scanned (PET) every 3 months. Then we moved to every 6 months. About a year ago, my mo suggested moving to an annual schedule. Though not a nervous Nellie, I haven't been able to accept that yet, so I'm still on an every 6 month cycle, barring any development of symptoms. My mo pointed out that I have been NED with a single bone met for quite a few years. Scans are not entirely benign and she feels I may live for a long time so is concerned about radiation exposure. I would love to feel secure enough to accept annual scans !

Tina2

Bloomingdalechik,

Your scan regime sounds like mine at the start. As you'll see from my signature, I'm five years out with Stage IV. In the very beginning of treatment, my onc ordered scans every three or four months, since no one knew what was happening. We moved up to six months as my lung mets remained stable and no new mets appeared, and eventually to once a year as the mets steadily diminished in size and became metabolically inactive.

I'm fine with this schedule. Annual scanning is often enough to reassure me that we'll spot something if it comes up, yet not so frequent that I can never escape scanxiety.

Tina

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Mab60

hello. I am still being scanned every 3 months. CT and bone.

Mary Anne

Longtermsurvivor

If my oncologist of 24 years had had his way, I would have been scanned annually and as needed when facing changing conditions in disease symptoms and/or treatment plans.

I'd already exceeded a lifetime dose of radiation though and chose to scan only when facing changes.

Ultrasounds are no big deal, chest x-rays okay (lots of pleural mets, symptoms & effusion problems) and CT scans less than PET/CT scans. http://www.radiologyinfo.org/en/info.cfm?pg=safety...

I personally dislike MRI exams because they leave me feeling rattled and disoriented.

And I much prefer having my doctor take a good medical history and give a good physical exam.

Here's from the transcript of a TED talk by author, physician and teacher Abraham Vergesse:

A few months ago, a 40 year-old woman came to an emergency room in a hospital close to where I live,and she was brought in confused. Her blood pressure was an alarming 230 over 170. Within a few minutes, she went into cardiac collapse. She was resuscitated, stabilized, whisked over to a CAT scan suite right next to the emergency room, because they were concerned about blood clots in the lung. And the CAT scan revealed no blood clots in the lung, but it showed bilateral, visible, palpable breast masses,breast tumors, that had metastasized widely all over the body. And the real tragedy was, if you look through her records, she had been seen in four or five other health care institutions in the preceding two years. Four or five opportunities to see the breast masses, touch the breast mass, intervene at a much earlier stage than when we saw her.

1:11Ladies and gentlemen, that is not an unusual story. Unfortunately, it happens all the time. I joke, but I only half joke, that if you come to one of our hospitals missing a limb, no one will believe you till they get a CAT scan, MRI or orthopedic consult. I am not a Luddite. I teach at Stanford. I'm a physician practicing with cutting-edge technology. But I'd like to make the case to you in the next 17 minutes that when we shortcut the physical exam, when we lean towards ordering tests instead of talking to and examining the patient, we not only overlook simple diagnoses that can be diagnosed at a treatable, early stage, but we're losing much more than that. We're losing a ritual. We're losing a ritual that I believe is transformative, transcendent, and is at the heart of the patient-physician relationship. This may actually be heresy to say this at TED, but I'd like to introduce you to the most important innovation, I think, in medicine to come in the next 10 years, and that is the power of the human hand -- to touch, to comfort, to diagnose and to bring about treatment.

https://www.ted.com/talks/abraham_verghese_a_docto...

Now that I'm on hospice, I no longer receiving any blood tests or imaging exams. Just those important, ritual physical exams.

healing regards, Stephanie

bloomingdalechik

Thanks all, and particularly Stephanie. I'm so grateful for her counsel; may you rest in peace!

It's been 3.25 years since my diagnosis. I'm still stable and my on my first line treatment (Tamoxifen & Lupron). I'm now in the process of convincing my oncologist to change my scans from 6 months to 9 months. I think I'm getting her on board though she is hesitant. I still have some time to decide but would love to hear from all of you have longer periods between scans! Thanks!