Scan Frequency

[Marilyn]

How often do those of you who have metastatic breast cancer have scans? I have bone mets and haven't had scans in 3 years. I have been disease free since 2002 so I'm assuming that is why my doctor's have not scheduled them recently. Thank you for your input.

[StephN]

Hi Marilyn -
Congratulations on staying disease free for that many years.

I just had this conversation with my onc. She has had me checked by CT every 6 months. I had liver mets. I am starting to feel like I want to have longer between scans, but now that I am off long-term Herceptin over one year now, am not sure I want to give up my scans.

A few other gals, stageIV, and with long term NED I know also still get scans, and definitely more often than annual.

I have a bone scan every couple of years, besides DEXA scans on the alternating years. That may also change to just the DEXA.

[Marilyn]

With the thought of stopping Herceptin I am now seeking out all the information that I can. It's almost like when I was newly diagnosed. I can't get enough information and am having a hard time finding it about women who have been disease free for some time. At any rate I definitely will want to have scans with more frequency than I have been having. In the beginning I had them often but the length of time between scans gradually got longer and longer and I think 3 years is a long time and maybe we should make sure everything is ok before I take any further steps. Stopping Herceptin is such a monumental decision to me. Did you feel that way too Steph?

[CourtneyL]

Hi Marilyn - Great news about being disease free! Congratulations! Long may you dance with NED.

I get a PET/CT about every 3 months. But since my tumor markers seem to really track what my disease is doing and I do have some concerns about the long term effects of exposure to radiation, I am going to ask my onc about doing them a little more infrequently - like every 4 or 5 months, eventually every 6 months.

[Chelee]

Marilyn, That's wonderful that you have stayed in remission all that time. Here's to many more to follow. :) That being said when it comes to scans some onc's don't believe in giving scans at all unless there are symptoms. Then other onc will give them at set times, 3, 6, 12 months depending on stage,& type of mets you have.

Since Her2 is so aggressive I like to at least make sure I have a brain MRI every 6 months...and never any longer then a yr. I was orignally dx stage IIIA, Her2, with pos nodes. I had at least 6 or 7 PET/CT scans in 3.5 yrs. Along with brain scans, two DEXA scans...and just recently a bone scan. I recently had a recurrence and now have MBC. I just started back on herceptin/Navelbine and will be having a 3 month PET/CT scan soon to see if the chemo is working. Also I have 5 months of ECHO's already set-up since I'm on herceptin. It's really up to your onc...alot of onc feel it causes too much anxiety for a women to run scans if no symptoms.

Being stage IV like you are, and since you are thinking of stopping Herceptin I think it's only fair to want and request a scan. Three yrs is a long time...well for me it is. Some woman rather not go through all that. But I do better once I get my information back from a scan. (Were all different...there is no set rule.) But I think for your peace of mind I would bring this up to your onc at your next appt.

Chelee

[StephN]

Yes, marilyn, stopping the Herceptin DID feel like a VERY big step. I considered it for a while, and spoke with my med onc about it. I still see her quarterly. She set me up for FULL surveillance prior to the next visit. Pet/CT, every bit of blood work you can think of, DEXA, HER2 serum on a more regular basis.

With all that information putting me in the clear, I made my decision.

In your shoes, I would want all those tests ASAP for ease of mind before going ahead. Do you get brain MRIs?

After about 3 months, I began to feel quite liberated from my cancer center. They did a lot of remodeling and when I went back, I felt like a "Stranger in a Strange Land." Can you picture that?!? It is life changing, to gently snip that umbilical cord.

[Marilyn]

Yes, I am definitely thinking a total workup and scans. I've never had a brain MRI but I think I might want one....can't believe I'm saying that because I am so claustrophobic. I've had an MRI and will need relaxation drugs to be put in that tube...clammy palms just thinking about it. I am so lucky to have this decision in front of me. It's just surreal because I never thought I'd be making it. I am glad that I don't see the oncologist again until March 2nd so that I have plenty of time to research and come to grips. It is exciting to think of not showing up at the clinic every 3 weeks even though I don't really mind going now.

I did have scans more regularly at first and I guess the past few years have slipped by and I realized I hadn't had scans in 3 years. Definitely will change that! Thanks all.