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I'll start my fifth year at stage IV in July. Originally thought to be stage II but bone met was was discovered by accident 6 weeks after bmx, so we know it was there all along. Never had chemo, just rads to the femur and AI's. It is bizarre when I think of it because my life is largely unchanged, but I do have MBC and things can go south at any time. I'm definitely enjoying it while I can.

@tougholdcrow

I used to do PET scans before, and the last one showed a significant regression in the bone lesions — one of them even disappeared.

But I don’t understand why my doctor insists on doing an MRI. He says it’s more accurate, doesn’t trust the PET scan results, and claims that the PET might miss or fail to capture certain areas — that it could even show no uptake in a spot that is actually an early lesion.

My problem with the MRI is that I’m severely claustrophobic. I’m terrified of closed spaces and of having a big machine right above my head — it makes me panic.

Neither the anesthesiologist nor my husband understand this, and they’re surprised when I ask for sedation, even though I know I could have a panic attack if I’m forced to stay still for a long time or be in a confined space.

They don’t understand this at all, and I constantly get questioned about why I need sedation.

Even today, the anesthesiologist told me they only use it for children so they don’t move.

But I’m sure there are many people like me — I just don’t understand why they think I’m a freak.

I’ve scheduled the MRI for next week, and I’m very anxious about the results.

@heidihill Well, I have returned from my PET scan, had Olive Garden take-out (I was famished), and have the results of the test. No evidence of metastatic disease!! Yay! The only thing of note was "Multifocal ground-glass pulmonary opacities with mild hypermetabolic activity, most consistent with an acute infectious or
inflammatory process." Just FYI: I did have "something" several weeks ago where I felt absolutely horrible. Lots of sinus issues and coughing. According to some online searching I've done, this is the most likely culprit and can take some time to disappear from scans. Not too concerned as I am feeling better now, but as I mentioned earlier, I take a long lime to fully recover even from mild sleep loss or eating at the wrong time. I must get back to a normal routine.

Hope everyone is doing well!

Hugs, Pam 💗

10-28-2025

As a dog owner who walks their dog regularly when I can, (daughter lives nextdoor to me and shares in this) we always have Crumbles on leash; so that kind of stuff annoys us. And if he's needing to burn off energy, we take him 10 miles away to the next big town, to the dog run. Or else let him run in a defunct tennis court. If that area is that big, @chicagoan surely the dog owners could organize to enclose a dog run , or dog park. Anyhow, I know your concern. I'm old now, :-)) and my condition is needing building back up, if it's in God's Will, (I have pleural effusion) so I really want to start walking a whole lot more, and sure hope to not have a problem of trying to take a simple walk. Take care!

Nice to meet you all.

Dear @cure-ious

thank you for your reply.

I have done the Guardant tests, as well as ESR1 and PIK3CA mutation testing, and also the genetic tests — none of them showed any problem.

You’re right — I’m now searching through one area of the body after another to find out what’s causing the tumor markers to rise this way.

I’ll also keep you updated on my case, so that others who experience the same issue may benefit from what happened with me.

Thank you, dear @tougholdcrow

I know that the marker number is very high, and that’s what frightens me so much.

Since the last PET scan, my doctor and I have been searching for the cause, but I’m not convinced by his approach.

He asked me to do MRI scans of two areas in the spine, twice in a row, but found nothing,

even though he knows that MRI is like hell for me because I suffer from severe claustrophobia,

and I must be sedated to complete the scan.

Now I’m wondering — why didn’t he ask for an abdominal or internal organ scan

instead of repeating the same area twice just because he suspected something in one vertebra?

Now, more than four months after my last PET scan, the doctor has asked me to do separate MRI scans for different parts of the body to find out exactly where the problem is.

He said we’d start with the pelvis and abdomen, then move on to the brain, and finally the bones.

But I recently discovered there’s a test called “Whole-body MRI with Cancer Diffusion Weighting”,

which scans the entire body at once using a special technique and takes only about an hour.

I’m currently searching for a hospital that can perform this scan under sedation,

(I’ve been looking for four days now.)

@eddiej

Thanks so much for sharing your experience. I do exactly the same thing and try to shrug off pain and symptoms.

This episode began in June and the first GI doc just kept re-ordering augmentin. After 4 weekend trips to the emergency room I went to a new GI who referred me to an infectious disease specialist. I now have a midline port in my arm and am halfway through 14 infusions of a very powerful antibiotic. Only side effect is fatigue, so I'm napping a lot. If this doesn't work I will probably need surgery.