Looks like progression

[Flavia100]

Ladies, I had 2 1/2 hours of MRIs today due to pain in my back and leg. I found the following in my patient portal, however, I have not heard from the doctor. Is there anybody that could help me understand this? I understand that it is probably progression.

“ Osseous structures/Martow: There are a few T2 Hyper intense and post contrast enhancing lesion in the left iliac bone suggesting metastases The larger and more posterius of these measure up to 2.0 cm in size there is an additional smaller finding seen in the left Acetabulum Which may represent similar finding although this is also an area where subchondral cystic changes could be present. There is no evidence of intra-or extradural metastasis as high-grade canal or foraminal stenosis.

Finding suspicious for metastatic disease involving the L1 and L2 Vertebrae in both iliac bones

No evidence of intra-or extradural metastasis

So how bad is this news? I hope there’s somebody here that may understand it better than I do and now it’s Friday and I won’t get any answers until Monday

[13plus]

I have some anatomical knowledge but I still find the wording on your report hard to follow. It seems to be a bit differently worded to how mine have typically been in the past. "How bad" also depends on what mets you already had before this scan?

If I compare this to myself, I have way more bony lesions than what is mentioned here. So cancer-wise, maybe not that bad? The issue for you, seeing as you mention having pain, might be more about the combination of what state of health/strength your bones are in generally, and if the locations of these "possible" lesions impact places where nerves pass through. Eg, you might be getting pain in your leg too if a particular nerve in your back is getting pinched.

Try not to stress about what the report might mean, and wait until you get a chance to speak to your doctor. Did you have any existing bone lesions before these scans?

[Flavia100 in reply to 13plus]

my last bone scan was in May and it was absolutely fine. No new evidence of anything and all the bone mats that I had were for one of a better word, put to sleep. So this is coming as quite a surprise. My biggest scare is that they want me to go back on chemo. That would send me up the wall. But all things considered it’s nothing I can get rattled about right now. I’m pretty sure they’re going to send me for a scan and a bone scan this week for further clarification. I just want to be able to stand up and walk and get out because if this point I’m very very limited with the pain in my leg

[HelenWi]

Try to put it out of your mind and enjoy the day doing something you love. Your oncologist might have a different interpretation of what he sees when you have your visit with them. (I don’t look at test results any more and let him explain first; in several cases he interpreted enhancements and numbers differently than the radiologist. )

[Flavia100 in reply to HelenWi]

thank you, good advice.

[Hazelgreen]

Definitely badly written compared to the scan reports I receive in Saskatchewan! I looked up what "intra-or extradural" means. It has to do with the spinal cord. Since there is no evidence of metastases in that area, I'm not sure why it is mentioned

I thought this one sentence may sum up the overall finding: "Finding suspicious for metastatic disease involving the L1 and L2 Vertebrae in both iliac bones". If you did not have bone lesions prior to this, then I agree that it is progression. It seems to me that most participants in this forum have bone lesions. At the very least, the pain you've been experiencing suggests that yours may have gotten worse.

Hugs, Cindy

[Urca in reply to Hazelgreen]

I agree with you, Hazelgreen

[Beryl71]

Well I am moving to Scotland so I asked for a copy of my records. They have arrived and are still in their envelope to hand to the next professionals who need them. I made the decision not to look for the exact reason of the anxiety you are experiencing. At my last appointment I was told the scans hadn't changed and my bloods were within acceptable range. I feel well so that was enough for me, meaning I can get on with life

I would try to put it to one side and await your appointment. Maybe don't look at the info next time until you can have it explained by the experts. I think anxiety is our worst enemy, it robs us if the life we could have now!

Take care and good luck. X Carolyn

[Flavia100 in reply to Beryl71]

I think that’s a very good idea. I can’t be googling every word in that report

[mariootsi in reply to Beryl71]

I agree Carolyn. Anxiety is our worst enemy.

[PJBinMI]

One thing to remember is that bone mets rarely cause death! If you already have had bone mets, this is of alot less concern than if you haven't had them. With bone mets, we are usually prescribed a bone strengthening med, Zometa or Xgeva. I've had "extensive" bone mets since my first bc diagnosis in March 2004, almost 19 years ago, and have not had problems from them, other than knowing they are there! And I agree with Hazelgreen that the report is badly worded. I find it confusing and wonder if the radiologist who wrote it dictated it and didn't proofread it well. I hope your onc will be able to explain it and that you will have peace with the treatment plan.

[Flavia100 in reply to PJBinMI]

you don’t know how much better I feel after reading all of your posts here ladies. And yes I only have bone meds as far as I know. I had been diagnosed three years ago with metastatic progression after being free of cancer since 2008. What a bummer that was. Since then I’ve been on Faslodex And Xgeva with the option to go back to Ibrance if I need to because I did not fail Ibrance but was taken off of it because of the fatigue factor. I’m assuming this is going to require some radiation and it couldn’t be soon enough as far as I’m concerned because the pain that I have in my leg has pretty much confined me to my home unless someone takes me. It’s agonizing to try to drive. I think it’s pressing on a nerve. I will see the doctor on Tuesday so we’ll see what they say then.

[mariootsi in reply to Flavia100]

Good luck Tuesday!

[Flavia100 in reply to mariootsi]

Thank you so very much. This is the most wonderful group of women and I am thankful to be with you. I will let you know what I am told. I feel better after the exchange this am. I am in US

[mariootsi in reply to Flavia100]

We are thankful for you. Where do you live?

[PJBinMI in reply to Flavia100]

Some times I've used Lidocaine patches on a spot where my hip, and back come together. Those have soothed my pain really well. Lidocaine cream is also sold. You might try that if you haven't already.

[Flavia100 in reply to PJBinMI]

great idea..just ordered some

[13plus in reply to Flavia100]

physio or osteopathy with a really good person might be helpful too for the pain. Strength and stability of the core and lower back play such a large role in protecting the integrity of our structure and avoiding pain. You may end up still needing radiation but as an exam plume, I was able to avoid it when they wanted to do it on me because I wanted to see if I could get rid of the pain with the right core work and the drugs working together. Luckily for me it worked.

So even if you have to have radiation, think about getting some physio or similar too to keep you in a better pain-free place . Have a good meeting with your onc. on Tuesday!

[R7777 in reply to PJBinMI]

thank you soooo much for your post! First one ever to calm me completely down and gave me a positive ( proven) outlook of many years ahead.

Thank you xxxxxx

[Gingerann1]

will be thinking of you and hope the news and treatment plan gives you peace and less pain. We truly are all in this together….

[mariootsi]

I never read the scan reports. I always wait to see my onc. Otherwise my imagination would go to worse case scenario. I couldn't handle that.

[NPmary]

Sounds like possibility of mets in the Iliad bone but this is open to interpretation by your doc. Don't lose hope - and whatever the news is you have already been living with this. And you can expect your doc to have a plan.

[Flavia100 in reply to NPmary]

thank you! That is comforting. 😊

[Merma]

Oy! How nerve wracking for you! Good thing it’s almost Monday! My mom, who also had cancer told me long ago to have all scans early in the week for this reason. Best wishes for a quick response from your onc this week. ❤️

[Kcap430]

scan anxiety is definitely one of the hardest parts of dealing with this new reality. Reading the report can be torture. I have found having my doctor explain it always is much easier to manage. This is my hope for you come Tuesday. Nothing but positive thoughts for a good visit. Please keep us posted 💕

[Timtam56]

I feel so lucky to be a part of this forum and get to learn so much from all of you. I think you have all the answers you need here Flavia100, and I hope you are feeling better. Good luck and keep us posted here.

[Flavia100]

thanks 😊😊 I am leaving shortly from my appointment with the radiologist so I will try to report back on what he has to say. I’m praying for some relief from this pain soon. Have a wonderful day