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My visit with the RO

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

What a visit it turned out to be! Appointment at 1 and I finally left at 4PM!

I love this guy. He hasn't seen me since March. So we had lots to talk about. The lung nodules, this new pain in my hip, all the new doctors, etc. First he was thrilled when he heard the names of the new MO and the thoracic surgeon. It made me happy to know I really did make some good decisions.

Anyway, he did look at my scans and xrays of my chests. He did ask what my TS is doing about this. I told him we are waiting for one more scan in November. He said he plans on calling the surgeon to have a talk with him so he can figure out what this guy is thinking. Then he wanted to figure out why my hip is killing me. I told him my MO wants an xray and that I had one scheduled for Oct 1st. Boy, that did not go over well. He wanted to have it done there (at the hospital). I kept telling him I don't mind waiting. He figured out pretty quickly that I just didn't want to know if anything was wrong. I just felt it could wait and so could I. He finally won. I had the xray yesterday and he called me last night to say it looked good. He says he wants to speak with my MO and come up with a plan for more tests. He mentioned a bone scan.

I am not sure but is a bone density test the same as a bone scan? I did have the BDT done about a year ago.

I am also inclined to believe that Arimidex is the culprit here. I can't believe there is bone mets. I just can't!!!!

So more waiting but I am feeling pretty good and positive about what might be causing this pain.

Hugs,
Mary

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Mary,

A bone density test and a bone scan are two very different test to measure to different things.

Bone density is to measure your bones to prevent or give you something to make them stronger so they won't break. This is when you learn your ok, you have osteopenia or you have osteoporosis. You should have a bone density test every 2 years while you are on aromatase inhibitors. I hope you are taking something to make your bones strong. Arimidex can suck the life out of them. If you read the side effects Fractures are possible. I had 3 vertebra fractures on Arimidex after a very minor fall.

A bone scan uses nuclear dye to diagnose or track bone diseases. It can show uptake in bones that need to be looked into. It can also show osteoarthritis.

X-rays as I mentioned in a post to you last week is the bottom rung of the ladder that one begins due to insurance companies wanting the cheapest first. If you bone scan shows an uptake on your hip, they will probably order an MRI which is the best of all test for bones.

I like this Radiation Oncologist, he seems really on top of things.

We all like to blame the meds. I do it all the time. It's ....... fault and I hate it:)

Hope all will be well,

Best,

Doris

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

Thank You!! My bone density test did report I have osteopenia. Like I said, that was a year ago and I've not been put on meds to help build the bones up. I am taking calcium and Vitamin D (which was suggested to me by the MO). I hope it's enough to keep my bones from crumbling.

I cringed at your having 3 vertebrae fractures. YIKES. The RO did check my back while I was there. I guess that's why ... He was making sure my spine is not affected. Honestly, I don't believe bone mets has gotten a hold of me. SO ... maybe the Arimidex is causing this pain.

The RO did check the xrays and scans of my chest and there was no change from the xrays while I was in the hospital. So the steroids and antibiotics did nothing. The 1.3cm nodule is still alive and kicking (along with another one in the opposite lung). These worry me but I have to believe my docs know what they are doing. I am feeling confident that the RO will figure everything out soon. He knows the thoracic surgeon personally. This oughtta be interesting.

I will be seeing my pulmonary doc on Monday. It will be interesting to have his input about the nodule. I can't imagine what kind of tests he will order now. He did want me to set up an appointment with an ENT after my hospitalization but I had no idea WHY and didn't make that appointment. Again, should be interesting where he goes with that.

Praying you are feeling well. Thanks again for your post.

Mary

MAJW
Posts: 2515
Joined: May 2009

Mary, sounds like your docs are on top of things!....so glad you're happy with them, too....personally, I think a bone density test would show osteopenia in about 75% of women over 40......age! :(.....let us know how your appt.goes tomorrow.....Keep on truck'en.....it's all we can do....Hoping the Arimidex is the culprit of your pain.....
Hugs, Nancy

rallendorfer
Posts: 245
Joined: May 2012

And that makes me happy. If someone is concerned like that RO you have and takes matters into his own hands that gives me the feeling he is diligent to discover what is going on. A bone scan sounds like the way to go in my humble opinion, but you said you feel like you know what is causing the pain? What?

So glad the Xray turned up nothing!

xoxoxo
Rebecca

mom62
Posts: 600
Joined: Mar 2004

Mary,

I'm so glad your RO took so much time with you and is going to coordinate your care. My thoracic surgeon did that for me a few years back, he was super too. Bone scan isn't bad, you get some radiation injected and then wait for it to get into your bones (about 2 hrs).

The scan takes about 20 minutes and the machine just goes over you every few minutes from eyebrows to toes. You just lay there. Arimidex can cause bone pain, so you may be right about that!

Keep us posted and glad to hear you are getting some answers finally.

Terry

weazer's picture
weazer
Posts: 440
Joined: Mar 2010

Did you find out what the island was....I hope I'm write with my question,,,,good to hear your hip is okay.
Thinking opf you and Lots of Hugs....Karie

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

No, a bone scan is way different than a bone density test. I had a bone scan done when I had some back pain to rule out cancer, which it did. It is the easiest test ever! You get to keep your clothes on! lol I got an injection and we left to have lunch and came back for the test. You need time for the stuff they inject you with to get thru you. The test was maybe about 40 minutes long.

Good luck and let us know your results!

VickiSam's picture
VickiSam
Posts: 8229
Joined: Aug 2009

I am keeping you close in my heart, and in prayers. It appears that you may be
turning that corner, and things are looking up for you as well as your health!
Having the right team of Doctors in your corner -- looking out for you makes
all the difference in the world.

Good luck with the bone scan -- We will be there with you .. !

Gentle hugs,

Vicki Sam

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

It sounds like you've finally got some excellent care and I am so happy for you Mary. Good luck also with the bone scan and keep us posted.

Hugs, Lex

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

An email. Apparently she talked with my R O . Her message to me was that the xray was negative and she wanted to know if I was still having pain in my hip. She wants to do an MRI if there is pain. I pretty much shot that idea down. I told her I didn't like where this was going and said I want tl see my orthopedic.

Yanno...I can't even get an answer about the nodules in my lungs after 9 months of tests. I can't go through this again. My brain needs a rest. I honestly don't think the pain is mets. I've been told often how low my risk is for recurrence and with that being drilled into my brain, I am thinking....how can this be related to breast cancer? It can't be. I won't let it.

What do you all think? Would you want to be subjected to endless tests after going through the grinder FOREVER? And you are still getting no answers......

I am just so sick of this. I haven't heard back from my MO yet. Stay tuned

MAJW
Posts: 2515
Joined: May 2009

What a merry-go-round, you seem to be on.....personally, I'd have CT/PETscans back to back....from chest to your hips....or an MRI .... I think this would show something or not show anything...the latter hopefully.....not to mention give you peace of mind....and give your brain a much needed rest.....and if it does find "something" the earlier it's caught.......you know the drill.....sadly bc can go anywhere in the body...I'm proof positive of this....my recurrence rate was 20%......NED for 19 months.....then it came back and I've been in treatment now for almost 2 years.....

If your docs want tests, it's for a reason....you love all your news one's...follow their advice.....they're looking out for you.....that's what we want and expect from then...I have pet/CT scans Oct. 15.....scanxiety big time! But it has to be done....do I hate it, YES! But.....
Keep us posted....we care
Hugs, Nancy

MAJW
Posts: 2515
Joined: May 2009

What a merry-go-round, you seem to be on.....personally, I'd have CT/PETscans back to back....from chest to your hips....or an MRI .... I think this would show something or not show anything...the latter hopefully.....not to mention give you peace of mind....and give your brain a much needed rest.....and if it does find "something" the earlier it's caught.......you know the drill.....sadly bc can go anywhere in the body...I'm proof positive of this....my recurrence rate was 20%......NED for 19 months.....then it came back and I've been in treatment now for almost 2 years.....

If your docs want tests, it's for a reason....you love all your news one's...follow their advice.....they're looking out for you.....that's what we want and expect from then...I have pet/CT scans Oct. 15.....scanxiety big time! But it has to be done....do I hate it, YES! But.....
Keep us posted....we care
Hugs, Nancy

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi Mary, I'm really liking the sound of your Docs, it is so reassuring when you have a team all working together for you:) I feel like my Onc. gave up on me when she realized she couldn't save me:( Same as Nancy, I have PET Scans to track mine (triple negative, stage4), Oct 10th is my next scan and yes Nancy the "scanxiety" is on high:-(
Miles of Love,
Kari

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