HER2 Support Group Forums - View Single Post

Chelee · 12-29-2009, 01:00 AM

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

12-29-2009, 01:00 AM	#5
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Scan Frequency 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 __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.