January 30, 2017 at 7:19 pm #92933
For any readers-
Moms CT 3 weeks ago after a trip to the ER for 10 days of headaches, showed lytic changes in the foramen magnum (where her mets is) and sinusitis.
MRI last week.
We see ONC for review of the MRI today.
She has been practically bedridden for 3 weeks due to head and neck pain.
I will come back and update later…..August 10, 2016 at 5:01 pm #92932marionsModerator
I agree, as far as I know PET/CT allows for anatomical detail of the CT and detection of small nodules of cancer cells by PET. Don’t think there is anything better than that. Ultimately, the interpretation of scan results are as good as the operator analyzing the information.
Great on the Harvoni response. My youngest son developed HepC due to a blood transfusion required for open heart surgery at 9 months of age. Beginning of this year he underwent a 3 months treatment regimen with Harvoni and his response was similar to that of your Mom.
MarionAugust 10, 2016 at 1:16 pm #92931
Thank you Marions!
I appreciate the description of the tests. I thought the PET/CT would have been the end -all- be -all but I guess its good we are getting clearer pictures.
Mom is very weak today and suffering lots of sinus trouble. So Ill be driving her to the MRI.
BUT- I wanted to say – She started on Harvoni at the end of June and as of mid-July her HEP C was in REMISSION!! Undetectable! How awesome is that?!
Thanks for the encouragement. I am feeling better today.August 9, 2016 at 10:11 pm #92930marionsModerator
Megan…..Methodist is a good hospital and their physicians are quite experienced with this cancer. At this point it is best to await the outcome of the MRI readings. Based on these findings, treatment options will evolve.
Here is a brief explanation re: PET and MRI
PET (Positron Emission Tomography) Scans – picks up cancer activity at a very small level.
Image not as clear as CT and MRI, inflammation can obscure other activities on scan and localizing exact location of tumor. Best suited for higher grade tumors, metastasis.
Some insurance carriers won’t cover cost of PET Scan.
MRI (Magnetic Resonance Imaging) Scans – In many tissues, the image and detail are clearer than those with an MRI than a CT scan. For some tissues, MRI image is less clear than CT. Difficult to distinguish between Inflammation and scar tissue.
Stage IV – The cancer has spread to distant parts of the body.
I much understand your impatience, but with this type of cancer, you want as much information as possible and you have yet to speak with the oncologist where chemotherapy will be discussed.
Hang in there,
MarionAugust 9, 2016 at 6:47 pm #92929
Lainy you hit the nail on the head. Fright turns to fight. I needed to hear that today. That helps me to identify some of what Im feeling.
The fight, thats what I’m waiting for.
Mom and I have been to every appointment together since the mass was found in early June. She gets confused lately it seems and she cant retain as much detail. We will have 4 ears and my pen and paper.
I will update Thurs/Friday.
Again, thank you.August 9, 2016 at 6:03 pm #92928
Megan, you can “anger” here anytime you feel the need. No apologies needed. You are much better than I am as when I am waiting for answers I want them YESTERDAY! Hang in one more day and don’t forget to take your list of questions. Is there anyone that can go with you for this appointment as 4 ears are better than 2. I think once you get some kind of treatment started the outcome seems to be that the fright turns to fight because something is being done. And you are so right, it seems to take so very long. Please let us know what happens at the big meet up!August 9, 2016 at 5:57 pm #92927
Id love for her to go to MD Anderson and see Dr Javle. We have no insurance coverage there, unfortunately. We are across the street at Methodist.
I have my questions prepared for him once we see the MRI. And essentially, this MRI is a second opinion. — even though she has had 2 multi disciplinary committee reviews…I dont doubt that we are in good hands. Its just all so slow! The transplant evaluation, additional tests and scheduling lag all before a biopsy was approved really delayed some things.
My biggest issue – and I feel its with myself more than anything else… is all the hurry up and wait. Im the kind of person that wants ALL the info…NOW. Not a “lets wait and see if we need to have that conversation” approach.
I can appreciate that he doest want to just start radiation if there is any chance it may be something else showing in her bones. He was very generous in helping manage her neck pain and I’m grateful for that.
Thanks Lainy for your reply. I hope I have a better attitude on my next update later this week. Today Im just angry and need to step away from my keyboard.
-MegAugust 9, 2016 at 2:51 pm #92926
Megan, when feeling as you do I would suggest a meeting with the ONC where you present him with a list of questions that you need answers too that are understandable. My other suggestion is to gather your Mom’s reports from Scans and LABS and get a 2nd opinion. We are big believers in 2nd opinions. You are in a city that has the best place to be for CC patients and that is MD Anderson. Best of luck.August 9, 2016 at 2:27 pm #92925
Thank you. He has ordered an MRI on skull, brain and spine.
I am not sure why the PET isnt enough- this seems to be the way things have been going with us… Lets get another test to check this test. But he said he wants to make sure it is the spread and not something else. – like arthritis… in the skull base?? In her spine?? Im SO confused and irritated today.
This is from her PET: — and it seems pretty clear to me!
The liver mass seen on previous MRI demonstrates
abnormal uptake, with an SUV of 9.9.
The right hepatic mass seen on previous MRI demonstrates abnormal
uptake, compatible with primary liver malignancy.
Osseous metastasis is seen in the skull base and thoracic spine.
Abnormal uptake is present within a destructive lytic
lesion in the spinous process of T9, with an SUV of 4.9. The soft
tissue lesion measures 1.5 cm x 1.2 cm. Another lesion is present in
the skull base, with an SUV of 5.3. This lesion measures 1.4 cm x 1
Why are we wasting time on MRI?
He didnt seem too optimistic about chemo and its effects vs help….. and he said if there was no spread they would treat the primary tumor– but if it has spread then there is no point in treating the primary tumor with the standard therapy. We would do radiation on her bones and then chemo.
Why wont he start us on chemo? Any one have any ideas? (other than him wanting to see the MRI I didnt get another answer- Is it because this spread offers such a poor prognosis chemo wouldnt be worth it?!
I admit I havent researched much in the way of treatment as we were NOT expecting mets since her bone and abdominal MRI in june showed no additional tumors or abnormalities.
He said we will talk more after the MRI on Wed— but in the meantime I am confused and impatient!August 8, 2016 at 5:35 pm #92924
Dear Megan, I am so very sorry about this turn in your Mom’s journey. Not sure this is Stage 4 but your ONC should be able to tell you what the Stage is. All these terms we learn, right? Wishing for the best for Mom and be strong and please keep letting us know how everything goes.August 8, 2016 at 4:01 pm #92923
Just a place to update our journey.
Her hepatologist confirmed the metastasis via PET
1.5×1.3cm and 1.2×1.4 size lesions on her thoracic spine and skull base…..and 1cm lesion in left lung.
Got immediate appointment with oncologist so hopefully we can start chemo. Time to read the treatment section of the forum. Her hepatologist mentioned they may not treat her liver rather than try to control the spread.
Is this what we call stage 4?
Seems it’s a fast spread as the MRI of bones and lung on June 23rd didn’t show and lesions.August 5, 2016 at 3:32 pm #92922
Megan, I love your thought for today! We need to always take it one day at a time and a new thought each day is great!
My Teddy used to say, when DX with something new, “NOW we know what is wrong, let’s fix it!”.August 5, 2016 at 1:39 pm #92921
Im so sorry Daisy….
I just re-read her Bone MRI report and Im just so confused!
In 6(ish) weeks no signs of metastatic disease in bones on MRI to the PET lighting up her spine and skull!?!! I tried searching this forum to get an idea on how fast this cancer has spread for others but I must not be using my brain correctly today.August 5, 2016 at 1:14 pm #92920daisy1Participant
My mum’s cholangio metastasised to her skull in a short timeAugust 5, 2016 at 12:21 pm #92919
Thank you both for replying.
As far as genetic alterations, I dont know.
The only person I spoke to was the Evaluation team nurse as to why she was rejected. I already knew cholangio would mean denial, and in my gut I knew it was ICC even before biopsy based off the imaging – I just wasnt prepared for the “why” – Metastatic Disease.
Her body – as seen through the battery of transplant evaluation tests- is doing well : Liver Panel, Echo, Kidney, Pulmonary functions, etc. So at least she is not plagued with debilitating symptoms or ailing bodily functions.
Im just so, so curious as to why nothing showed on the Bone MRI in June but is present on the PET in Aug…. I am not too familiar with PET as I am with MRI. How does it present on the spine…tumor? Could it have spread in 6 weeks? So now, more waiting until Im in front of someone to get answers to these questions.
Treatment was always the plan- so now its just more areas to treat. Thats my positive thought for today.
I will check out the link and do a search- today may yield better results than yesterday during my time of woe.
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