Weird Scan Results

[Trissh]

So I had my CT Chest and Abdomen scans today along with NM Bone scans as I do every 4 months. Started almost 2 years ago with liver lymph nodes, lung lesion, liver mets and bone (left femur, spine) mets. Today: Chest clear,liver lymph nodes long ago resolved, Indexed liver mets continue to shrink and/or are stable. But, the bone scan noted a small new uptake on right lesser trochanter femur. I am on Ibrance and letrozole for almost two years. Onc wants me to get xray and wait for CA 27-29 before confirming it is a new lesion. Any thoughts? Can anyone relate? Trish

[Sharon0122]

That’s great news! I’ve been on Ibrance and anastrole for two years, I received bad news today but am happy for you!

[Trissh in reply to Sharon0122]

What happened?

[Sharon0122 in reply to Trissh]

I had a ct today, 14 days ago I had one also. I had a 2.0 cm lesion on my kidney which today, it has grown to 2.1 cm and new ones have shown up on my other kidney. I don’t see my oncologist until, September 25. Not sure what to think? Two ct scans in a week and he’s waiting month to see me! I’m not happy!!!

[Trissh in reply to Sharon0122]

That's too long... over a month of worry! Can you call the office and ask for plan on zoom call or tell them too long to wait for appt?

[mariootsi in reply to Sharon0122]

That's crazy to have to wait so long! Maybe a phone or telehealth visit.

[Sharon0122 in reply to Sharon0122]

Thanks to all who replied to me, I just woke up, and didn’t sleep very well and the results on my mri are not much better, why would I think they would be? Hugs to all of you!

[Sharon0122]

when he ordered the scans, he told my gp there was no reason to change my appointment. Sometimes I don’t think he likes me. And he’s the only oncologist in 90 miles.

[Onedayatatime60 in reply to Sharon0122]

It is frustrating to wait that long. I would bet he likes you but I think some Onc's become so focused on the disease and forget there is a patient. I want to say to them - "what if it was you or a loved one? How would you want them treated?" It is hard if there is no Onc for 90 miles your choices are limited. I wait about 1 1/2 weeks from scan to results which is long enough. I saw one Oncologist on Twitter say she calls her MBC pts after a scan instead of making them wait - I wish all would have that sort of pt centred approach. Another Onc I follow on Twitter said after her own BC diagnosis she started going on sites like this and wish she had done so before to understand the pt perspective. As much as all these hospitals talk about pt partners etc., I don't think they really practice from a truly pt centred approach - if they did we would not have MBC pts waiting a week of a month for results. As far as your actual result - it is torture, but wait until you meet with him to have context and a plan (Sorry for long winded response)

[NPmary]

Sure sounds like progression, sorry to say. An MRI or PET scan would make more sense than a plain x ray film. No one wants to switch treatments - but you also don't want to continue treatment that failed you. I would consider a second opinion.

[Trissh in reply to NPmary]

Because the bone scan report said "worrisome" of metastatic disease of the small new uptake, and because the radiologist who reads the bone scans doesn't have the rest of my picture for the day, my oncologist thinks if the tumor markers have not moved up (they have been spot on for me so far), let's have a radiologist look at an x-ray to determine whether it may be something else causing the uptake - as a first step. --Trish

[NPmary in reply to Trissh]

Good luck! Let us know how it goes. Don't hesitate to ask for a CT scan or mri if needed.

[SoulJourney]

Hi Trish!

Don’t panic is so easy to say but so hard to do!

Your soft tissue continues to respond and that is reason enough to continue on the same course of treatment, you have not failed yet. A little possible bone uptake should be measured with an MRI. To know more. The x-ray will just be extra data but know it may be only next step. One little spot can be radiated if it doesn’t stabilize. Another possibility is that bone Mets and bone repair show the same on the ct scan.

I wish we had waited out possible progression in my earlier lines of treatment. Bone Mets while they can be painful don’t have the same impact on your health as soft tissue.

I have been there, I no longer show liver Mets just bone and we no longer jump treatment unless I have substantial growth over a 3 month period. Sometimes I am scanned so much I think I could glow in the dark but by oncologist monitors closely.

A year ago I had uptake in both hips for 5 months but didn’t switch until a new lesions appeared on my skull. I am good with waiting now as I am more afraid of running out of treatment options.

I have been at this over 9 years, hang in there! You’re stronger than you think!

Also consider how you are feeling otherwise…watch for increased fatigue and a change in eating. No real difference there is reassuring.

How is the pain in the hip? Are you taking vitamin D and K, calcium and lots of protein? It will strengthen your bones. I have also intermittently been on bone strengthening drugs like Zometa.

Hope you get the answers you need, hugs💜

Tammie

[Trissh in reply to SoulJourney]

Yes, I do take D3 and diet is high in protein. I'm not sure I get enough K in my salads. Do you take a K supplement? If so, which one? I have not been on Xgeva, though recommended, because I have had a number of dental implants over the years and it seems that may correlate with jaw necrosis. I try to do some strength training and walking along with protein heavy diet and D3. Thanks for your response, Tammie, and I do realize that we may need to keep a close eye on this spot but the doc and I agree right now the meds are still doing their job on the liver mets.

[13plus]

hi Trish, I agree exactly with Tammie. I went over 3 months once ( on iBrance) knowing I had progression in the bone. It ‘s not ideal of course but ok unless you have problems coming from it. Soft tissue like liver is when it becomes very concerning but I still went another 2 months with slow progressing liver on another treatment because my bloodwork was good and I felt good at that time.

I think your onc is being cautious but smart. MRI have at times shown my bone lesions more clearly but insurance doesn't always want to pay for it.

Do you ever get the other TM tested? Ca 27-29 for me has not always been representative

[Eliactida1955]

What is the Cea and 15-3 tumor markers? Don’t be eager to get off ibrance. But if markers are creeping up then you might have too. Sounds as if you are improving some except the new stuff. I too get scans every 4-5 months and I will schedule soon. The onc told me markers can go up when cancer cells are shedding . I wish you the best.🙏✝️ take care.

[Trissh in reply to Eliactida1955]

Yes. I read that somewhere too. My markers have trended down to where in April they were 36.6... within normal range. Wow I loved that! But yesterday's markers were 39.1. So I just went for the X-ray... We'll see what they recommend!

[Eliactida1955 in reply to Trissh]

Please don’t make mistake I did-getting off ibrance too soon. Give it a month or so check again. I wish I could of went bank I was on ibrance for three years..be strong and good luck!🌹

[Trissh in reply to Eliactida1955]

when did you stop ibrance? what are you taking since then? --Trish

[Eliactida1955 in reply to Trissh]

I stopped ibrance witty letrozole nov of 21. And started affinitor and aramastin which was awful and didn’t work. After that the Dr put me on injection hormone blocker once a month -ithuetand caused knots inboth hips.it was called. Femara and it didn’t work. Now Ian on xeloda firalittle over a month. I’m getting lab tomm and I’ll know what tumor marker is.I’ve. Been off med for awhile since may 19 -I tripped and broke my. Left hip sore recovering still .I was over a month in rehab.so far on xeloda least side effects but we will see soon. I was. Diagnosed. Aug. 2018. I chose. No. Surgery. No I’ve chemo. Or radiation as stage 4mettobones-no cure.keep strong🙏❤️

[Trissh in reply to Eliactida1955]

Hope your labs are good tomorrow! Thanks for your input! --Trish

[TammyCross in reply to Trissh]

An increase of 2.5 in a tumor marker means nothing.

[Trissh in reply to TammyCross]

Agreed. But doc wants me to see radiation therapist to determine options for the new spot. Then get another scan in 8-12 weeks. I think it's a good plan.

[TammyCross in reply to Trissh]

Right, it is about the scans, not the tiny increase, which your oncologist apparently doesn't think is an increase.

[kellylinkane]

i have uptake on my scrum on PET SCAN but no CT abnormality, then next scan 6 months later spot disappear. SO if no CT abnormal maybe ok

[Andersl]

Yes I think that's a good decision. This approach will give a definitive answer. Waiting for results though is the hardest thing so I do empathise with you. X