Changing treatment

[Joey1965]

Hi all -

When does treatment change for you? My latest pet/ct had a ‘new mets on femur head ‘ which did not show up on mri ten days prior. How does one know if it is indeed ‘new’ area or simply degenerative bone? In his report the radiologist wrote that theres an increase in suv in most of my mets ( i have numerous in spine) in addition to this new mets found.

I had xrays done of pelvis and femurs also about ten days ago prior to pet/ct scan - ortho told me i have degeneration in left hip.

Oncology wanted to change my protocol am on - i went through reports of previous 2 pet/ct scans and according to last two reports the latest pet/ct is stable. I spoke my concerns to Oncologist and she got another radiologist to compare the scans and his report stated that all is stable. So i will continue on ibrance/faslo .

I find it insane though and extremely worrying - that such errors are made.

Anyone else have similar experience?

Do your doctors cross reference with other scan modalities when there are new findings?

Thank you!

[Kiera49]

I had something similar when I had been on Ibrance for 1 month the radiologist said cancer was worse, then onc told me it was better, then hospital doctor told me it was worse, so I said you best speak to onc because she said it's slightly better, he came back said sorry it is better, I was a nervous wreck

[Mindysooty in reply to Kiera49]

Wow, thats not great is it. I think what they tend to do is read the previous report, then update based on that.

My recent experience in hospital highlighted this where the dr was talking to me about mets in C3, T11 and my right hip. I was a bit confused and concerned because I wasnt previously aware of those mets - I only knew about L1, T5 and T9 (+ liver lung, chest wall, lymph nodes)

The dr had to go away and investigate and came back saying, yes they were on earlier radiology scans. Its not great is it but when I raised it with the oncology specialist nurse, she just said well we just refer generally to it as mets in the spine. So matter of fact 🤷‍♀️, but its not to me, I like to know these things.

[Kiera49 in reply to Mindysooty]

Not great I dont like to know too much, just minimal information, haven't even asked what stage I am assuming its stage 4 as cant be cured and have mets

[mariootsi in reply to Kiera49]

Me either.

[Joey1965 in reply to Kiera49]

Thank you for your response.

[Joey1965 in reply to Mindysooty]

Thank you for your response - i feel the same as you do - wanting to know.

[Joey1965 in reply to Kiera49]

Thank you for your response!

[Hidden]

I had two scans that the radiologist said had progression but my oncologist and radiation oncologist said were ok. Then I had a bone scan and I had a lot of progression that had my oncologist bypassing one treatment and going straight to chemo. I think they should have listened to the radiologist. That being said, a different radiologist will read it a little differently or measure things differently. It’s hard for us to know what to do but go along with what our doctors suggest.

[Joey1965 in reply to Hidden]

Thank you for your response!

[Rhwright12]

Bone mets are difficult...U think with all the tech out there these things wouldn’t be so subjective...and yet they are 😱 On my last scan there was maybe possible increased uptake in my tibias. But I had mets there before. I was told after 4 years we’ll only concern ourselves with new ones. As again, it’s hard to tell slight increases or decreases in uptake. It’s so subjective 🤷‍♀️...So we didn’t change anything and we’ll rescan in December. 😀

[Joey1965 in reply to Rhwright12]

Thank you for your response!

[hdhonda]

Joey,

I can't answer your question, but I prefer the truth. I don't like soft coating anything. If I find that I can't trust someone to tell me the truth, then I am likely not to trust them about anything. I can't make the best decision for me if my decision is based on soft coating or lies. Blessings Hannah

[PJBinMI]

I'm a long timer with mbc, bone mets only, and I don't know if it is like this everywhere, but my scans are read by remote radiologists and not the same one every time. Last several scans, the reporting radiologist has only looked at previous scan report and not the scan itself. Longer ago, probably 8-11 yers ago, my onc and I went on more than one wild goose chase when a radiology report claimed there were new mets in new places, including my brain! When my onc looked at the actual scan and compared it to previous scans, she saw nothing to be concerned about! She wasn't a bc specialist but she had alot of experience working with bc patients, was almost 60 when I started seeing her, and I trusted her as much as it is possible to trust another human being! (She retired about 2 1/2 years ago and that was more upsetting to me than any progression has been!) One thing to know about scans is that most of them take pictures in "slices", as if we were getting a picture of a hard boiled egg my visualizing slices. If the scan's slices are placed a bit differently from the last time, mets are not going to look exactly the ssame and may look smaller or larger depending on where the pictures were taken. I hope this is making sense! My brain isn't what it used to be! Again, using an egg as the example, if you slice an egg dead center the slice will be a different size than if you slice it 1/4 inch off center. I don't know if this would be true for everybody, or even half of us, but progression has never surprised me . I've been exceptionally fortunate to do really well and got nearly five years from Letrozole and then over 9 years from Faslodex and now I'm on Exemestane. I've also been on a bone med most of the time....first Zometa and now Xgeva. I was diagnosed the month of my 58th birthday and now am 74 so there's a big difference in my age, but I am pretty tired and don't have the memory I used to, but I'm doing well enough that people would never guess that I have an advanced cancer and that I am in my 70s. I wish I could share my longevity and easily controlled cancer cells with everyone, esp young parents!

[Joey1965 in reply to PJBinMI]

Thank you - yes your visual makes a lot of sense. I wish you many many more years! Stay blessed 🙏🏻

[8576]

I don't know if they cross reference but I don't think so. They are too busy. Perhaps if questions are asked they might investigate further.

In my case, so many errors have come up, that I question most decisions. I have gotten a second opinion twice now. Thank heavens there are a few good doctors in the mix that I can rely on. They have been extremely kind to me and know what I am dealing with so they stay on my case. A true blessing. Never the less, I check everything.

Cheers, June S.

[Joey1965 in reply to 8576]

Thank you June. I also dont think they cross reference. I will also try to get a second oncologist - at least so that he/she actually look at scans instead of simply relying on radiologist reports. I also check everything. Best of luck on your journey.

[8576]

Thanks. Best of Luck to you too.

Cheers, June S.