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Chelee · 12-08-2009, 01:25 AM

Adriana, As you probably know I've had problems with my onc for a long time. One of them is getting answers to my questions. Eventually they gave me a case manager that is "suppose" to be there to help out the onc because they are just so busy. Having this case manager has actually made things worse which I didn't think was possible!

But one thing I just started to do is type up a note to my onc and send it return reciept. I've only done this once so far but it worked! I wrote a very short letter to her telling her I've contacted the office on several occasions...also contacted my case manager...but no one is getting back to me and I need some answers.

This finally worked. It's a little more work then what I should have to do but it the end results is she gets back to me it's well worth it. This way the doctor can't say they weren't aware you had contacted the office. I've heard all the excuses and it's not right that they leave you sitting there stressed out when it would take only a few minutes to address your questions/concerns. It's not nice to leave you hanging like that.

I'm no expert but I do know SUV stands for "standard uptake value." Your SUV is only 2.2 which is low. So that could be scarring, inflammation or any number of things. (However that doesn't rule out met either.) The higher the number the more concern there is. I'm sure someone else here can explain it much better then I can. It sounds to me like they just aren't sure at this point...so I think it's only fair your onc gives you his opinion on this. If you have too...write that letter and send it today. (Paper trails work wonders and get quick replies it seems...it puts them on the spot.) It's not like you have to be mean...just write a sincere note of concern. Hang in there and hope it turns out to be nothing to worry about.

Chelee

12-08-2009, 01:25 AM	#5
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Metastases to Rt 4th Rib Adriana, As you probably know I've had problems with my onc for a long time. One of them is getting answers to my questions. Eventually they gave me a case manager that is "suppose" to be there to help out the onc because they are just so busy. Having this case manager has actually made things worse which I didn't think was possible! But one thing I just started to do is type up a note to my onc and send it return reciept. I've only done this once so far but it worked! I wrote a very short letter to her telling her I've contacted the office on several occasions...also contacted my case manager...but no one is getting back to me and I need some answers. This finally worked. It's a little more work then what I should have to do but it the end results is she gets back to me it's well worth it. This way the doctor can't say they weren't aware you had contacted the office. I've heard all the excuses and it's not right that they leave you sitting there stressed out when it would take only a few minutes to address your questions/concerns. It's not nice to leave you hanging like that. I'm no expert but I do know SUV stands for "standard uptake value." Your SUV is only 2.2 which is low. So that could be scarring, inflammation or any number of things. (However that doesn't rule out met either.) The higher the number the more concern there is. I'm sure someone else here can explain it much better then I can. It sounds to me like they just aren't sure at this point...so I think it's only fair your onc gives you his opinion on this. If you have too...write that letter and send it today. (Paper trails work wonders and get quick replies it seems...it puts them on the spot.) It's not like you have to be mean...just write a sincere note of concern. Hang in there and hope it turns out to be nothing to worry about. 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.