Scan results - need help to understand

[Lulu4545]

Hi ladies,

Thank you all for being here.

I got my last Pet results and I'm puzzled.

Last pet 01/2022: complete metabolic response

05/2022 : Not really good.

I have two existing bone mets which are hyperbolique again , L2 4,5 from 3,1 and a rib 3,7 from 2,3.

The radiologist told me it wasn't really relevant because it could be related to the quantity of sugar in my blood. She feels the best would be to do another Pet in 2 months.

She said it's too early to call it progression.

I'm really confused and very upset.

Can anyone cheer me up and explain this strange logic ?

Thanks a lot.

Lovexxx

Lucie

[mariootsi]

Lucie, I'm hoping that the radiologist saying there's no progression is enough to give you peace. And that the findings aren't relevant! I would say try, and I know it's hard, but try somehow to relax til your next pet. Also, call your onc for more clarification on the sugar situation. Love and hugs,

Marianne

[Lulu4545 in reply to mariootsi]

Thanks a lot for this comforting answer.I'm seeing the onc this afternoon.

Will keep you updated.

Lovexxx

Lucie

[mariootsi in reply to Lulu4545]

Please let us know!

[Bettybuckets]

Trust these radiologist if they are at your cancer center then they know when to recognize the real deal profession and when to punt and wait. I was in an accident and so had a CT scan at my local hospital shortly after being given s stable report from my big boston hospital. Anyway the ER came to give me the result from mu CT scan after the accident and told me my cancer has now spread from just my bones into my liver! Devasted by the news, I texted the update to my wonderful oncologist who texted back. “Call me”. He then told me doubted that it had spread into my liver from the CT scans he did one month prior. So 2 days later he got me in for a Pet scan and was able to reassure me that NO LIVER SPREAD. My point is a lot that they are needs to be interpreted and these guys who do radiology for cancer patients under stand that some things light up for non nefarious reasons. Good to wait and see and not react and jump away from a perfectly good treatment that brought you such good results in jan. Hang touch and try to think the way that they do… that this is just some sugar in your system showing up that isn’t cancer… and no memes to panic and wreck all the good times you could be having in the next few months for what is probably going to turn out to be nothing. I hope that helps!

[PJBinMI]

Something else to know about scans.....I think this is true for most type of scans. They take their pictures in "slices" and so how they measure the size of tumors and mets depends on exactly where the slices are taken. The best analogy I've run into is that it's rather like slicing eggs. You can slice two eggs that are the same size but end up with slices that differ from each other. Does this make sense? And radiology reports can be confusing, with terminology most of us aren't familiar with. In my long time living with MBC, my onc and I have gone on several wild goose chases looking for progression that a radiologist's report mentions and not finding any. My onc started examining all scans herself, and I have come to the conclusion that some radiologists are so afraid of missing something that they over report. If we don't have rip roaring aggressive cancer cells, identifying progression today or three months from now may very well not matter two years from now. I think it helps to think of this as a long term thing. Of course there are times when we need to bring something to our onc's attention--new symptoms, side effects that interfere with our functioning. I hope your next scan will be reassuring and that you can find peace of mind between now and then. Such a crazy world we live in!

[Lulu4545]

Hi again,Just seen onc.

She is not worried at all and said we continue the same treatment - Ibrance, Anastrozole.

The next pet will be in 3 months instead of 4 months, just to check there is no progression.

It seems SUV are not that precise and sometimes uptake could be due to too much sugar the day before or too much physical activity.

We'll see end of August.

Take care

Lovexxx

Lucie

[NShaft in reply to Lulu4545]

I have had SUV go up and down on my Pet scans. Fortunately my onc doesn't get too worried. Apparently the readings are subjective. He does look for trends over a period of time. You don't want to be too quick to change meds unless it is really warranted so it is great you have an onc with a wait and see attitude.

[Aquamoron in reply to Lulu4545]

Lulu, I have had similar convo with my Onc. and I would just like to add to what these wonderful ladies on this message board have said.

Yes, scanxiety is a real thing. Leading up to, during and afterwards. I was ready with my Valium for staying still while in the machine, but holy crap was caught off guard with the emotions and nervous energy afterwards. Lesson learned.

Yes, there is some required prep for scans besides fasting and drinking that glucose stuff. This was a shocker to me, but made sense about no strenuous excercise a few days prior and avoiding certain foods. I googled and found some interesting pointers on Mayo Clinic’s website .

Yes- lesions can vary slightly from scan to scan depending on how it’s sliced. The scans will also pick up old scar/lesions that have healed as well and changes or additional lesions in bones and organs. That’s why we have them done routinely to see what changes present and how to interpret them. (You can have the best CT/Pet scan machine in the world test you, but the image interpretation is only as good as the radiologist who performs it. Oncologists often only read the report, and that’s because they aren’t radiologists. )

So, when I was faced with my MBC dx after being in remission for 5 years I cast the net and got a disk burned and took it to another radiologist who specializes in Cancer for a second opinion. Do I trust my local oncologist? Absolutely. Reporting on scans, genomic testing and bloodwork are his wheelhouse. But at the end of the day it’s my life, and people can make mistakes sometimes and I’d rather not gamble my health.

Wishing each and every one of us health and happiness.

[love2golfwell in reply to Lulu4545]

Lucie, just curious if you follow a low-carb diet and no exercise for 24 hours before your PET scan. I was told it was necessary to do that to get accurate results as they inject glucose into you the day of the scan and do not want you to have any muscle uptake from excess sugar caused by carbs or exercise 24 hours before. I was given a special diet that eliminated carbs like potatoes, rice, breads, cereals, fruit and any other items that would contain sugar plus no caffeine. Also I was told I could not even do an exercise walk or play golf for 24 hours before. I have been following this regime every time I do a PET scan and have not had any issues. Perhaps you could ask about this. In the meantime, try not to worry and hoping your next scan will be great and not so confusing. Sending hugs.

[Lulu4545 in reply to love2golfwell]

Hi,How interesting! I was never given this advice.

The day before the pet I did a lot of cleaning - vacuuming, scrubbing... kind of physical stuff I'm not used to. I also ate a lot and drank alcohol two days before - we had friends at home. The day before I was stressed and I ate a lot of sweets.

I have really got it all wrong...

This also reminds me I went to see a chiropractor just before my first pet which diagnosed me stage IV.

The chiropractor really cracked my back, hips, neck and I was in absolute pain after for a while.

When I had first pet I was really in pain because of the chiropractor.

I told the onc at the time but she said no way could my mets be linked to this.

It's strange how we get different information according to where we live.

Do you think tough exercise could make some bones light up?

Lovexxx

Lucie

[love2golfwell in reply to Lulu4545]

That sounds like a lot of foods and activities that could have lit up your PET scan as they would create uptake of glucose in your body. Someone should have told you what to do the day before the scan to minimize this uptake. I think you should talk to your oncologist and the radiologist about this. My radiologist sent me the instructions to follow when I registered for my appointment and stressed the reasons to follow the instructions to have an accurate scan. I'm so sorry that you did not receive this information.

[Lulu4545 in reply to love2golfwell]

I was just told to fast for 6 hours. I stopped eating at 10 pm for a pet at 9 am.

I'll just have wait and see

[love2golfwell in reply to Lulu4545]

The first time I had a scan at a different facility and they did not tell me about not exercising or to follow a low-carb diet, but I had looked up online about it based on comments I had seen from others about this and decided to follow it anyway. The new facility where I go gave me these instructions and said it was important to follow them. I think you are correct that we can get different opinions based on our doctors and where we live and even from different facilities. Anyway, hoping for good results for you for your next scan.

[Lulu4545 in reply to love2golfwell]

Thanks a lot. It really helps to get extra information.By the way, as I'm a long time off my next Pet, I played golf yesterday - 18 holes.

I hadn't done that in the past 2 years- since I was diagnosed.

I ache a little everywhere now, but feel good I managed to do it all.

My onc said I'd put weight on because I'm not active enough- and obviously the zometa induced menaupose.

She told me I could play golf and that moving can prevente joint pain. Also, she assured me I was not at risk of breaking any bone.

That was my biggest fear.

Take care

Lovexxx

Lucie

[love2golfwell in reply to Lulu4545]

Dear Lucie, so happy you had the chance to play golf! I play almost every day as I live in a golf course community in Florida. I tell everyone that playing golf is keeping me alive and doing well. There is a lady here with Stage 4 ovarian cancer who plays a lot, too, and is doing very well. I get to be out in nature and see all of the wonderful wildlife we have here, socialize with friends and try to improve my game. It challenges me mentally, emotionally and physically. I believe that it helps to alleviate joint pain as the movements are providing synovial fluid to the joints which helps them to be lubricated. I think golf is a great game and I encourage you to get out to play whenever you feel up to it. Sending you hugs

[marianne88]

Unfortunately I’m not a doctor so I can’t give u advise. But I can pray for her and send u virtual hugs. 🥰🥰

[8576]

Lucie, I would take what your oncologist says as she would have examined the scans carefully and even talked to the doctor who read the scans.

Cheers, June S.

[Lulu4545]

I am taking what onc says mainly because it's the best I can get.Still don't really understand this uptake because of sugar or exercise.

I'll only know for sure in 3 months.

Has anyone already had a 'non-relevant' uptake on some previous mets that just went away?

Lovexxx

Lucie

[Bettybuckets in reply to Lulu4545]

Mine was was in thr liver but was nothing… uptake was apparently from the car accident injury and not cancer spread