Answers received today

[Francesca10]

Thank you all for your support and sharing. It has made a difference for me💕

So my onc is practicing 35+years and he said mixed results do happen. One theory is the new ones are resistant to meds. I told him my theory-pet scans are not so accurate . His answer was he prefers ct and bone scans. I said that’s the same amount of radiation as pet scan. He said yes that’s true, but pet does whole body as well as others doing whole body. I told him I will go maybe in a year for those but because we know mbc is in my ribs, near spine thoracic and lumbar and two lung modules, I would rather do mri. We can monitor that way so he said ok but you do chest, abdomen and pelvis mri. I said fine. No Med changed- continue Ibrance’s, faslodex and xygeva. I think my theory was more accurate— what came up on mri did not show up on pet scan. So unless other symptoms develop I will have mri’ s done. I am tired of this issue. My scans and mri were compared side by side in the mri report and that’s what started this. No radiation either unless I have bad pain. I told him I know sometimes there just aren’t answers but it gets very frustrating dealing with mbc unknowns day in and out. He understands and has a lot of compassion and I know science is fallible. There is much they do not know. Ok I am rambling.

Thanks to all of you again for your replies and kindness.

Love

Frances

[SoCalLady]

Yea for standing up for yourself for what's going on with your body today.

[Francesca10 in reply to SoCalLady]

I have no clue anymore!!! Today is I feel yuk day - day 21 on ibrance and with shots today feeling wiped out. Tomorrow I will get up and be energized I hope.💕

Frances

[mariootsi in reply to Francesca10]

Rest up! You have had a stressful time.

[LeeannW710]

Thank you for the update!! Try to get some rest. Start fresh tomorrow! Xoxo

[NPmary]

Frances, thanks for letting us know. It's great that you have a good relationship with your doc and have a plan.

[Hidden]

Hi Frances,

Thanks for the update. I just wish you could have had some clearer answers to your questions. I don't see how you can have such mixed results. That must be so confusing and frustrating for you. But it's good that you have a medical background so can talk to your oncologist on an equal footing and stand up for yourself. I hope things improve for you.

Sophie x

[mariootsi]

So happy you advocated for yourself and came up with good results. Sounds like you have a good onc!

[Ibelong]

Good rant. Glad you got your answers and will go with what you feel is your best option. You are a powerhouse!

[worldtravel75]

good info - I will discuss this with my oncologist too.

[blms]

My bishop is radiologist with military for years and said PET is still far more Radiation than the two combined

[blms]

Where are you located and treated

[Francesca10 in reply to blms]

New York treated by onc doc with Nyu Langone

[lynnhbtb]

Good job being your own advocate. It's not easy, but someone must do it! Rest well and I hope your energy and side effects subside soon.

[2muchsqueeze]

Hope it is better for you. I think the mri was a wise choice. I read the same about pet scans and ct scans accuracy and exposures. Really baffles me that some of these places can refuse treatment if you disagree. My "Center" I found out after 4 years is not a licensed

or state regulated although their are quite a few of these"centers" in our state. I have my results sent to the center but done elsewhere now. It's amazing how they all have their own interpretation. Machines need to be calibrated and checked periodically as well.