The Comprehensive ASPS Scan Schedule & Discussion + Advice

[Olga]

Lynette, in the scans schedule we called it not the pevic CT or MRI but abdominal CT or MRI (a bigger field than just pelvic). Usually a CT is enough to initially see if there are any areas of concern, with the MRI reserved for clarifying what these abnormalities are and how successful the treatment was. For example, Ivan's andrenal mets were initially spotted by the radiologist on the CT scan, but after the cryo was done we use the MRI to verify if the ablation was complete.
We had few people with the pelvic bone mets. It is my understanding that they could be found by the general all body bone scan or by the abdominal CT scan.

[Bonni Hess]

Dear Lynette,
As Olga has said, either a CT scan or an MRI can be used to monitor the pelvic and abdominal areas and to diagnose possible pelvic or abdominal area tumors. However, the MRI is more definitive and it does not carry the risk of radiation exposure that a CT scan does which is why we have now requested and been granted a change to abdominal/pelvic MRI's instead of abdominal/pelvic CT's for Brittany based on our concern of the large amount of radiation that she has received from innumerous CT scans during her 12 and a half year ASPS battle. It is very important that regularly scheduled either abdominal/pelvic CT scans or MRI's be included as part of a vigilant chest CT, brain MRI, and full body bone scan schedule for ASPS patients both men and women. I don't understand why George's radiologist said that "a clysis is required before the CT" and I dont' know what a "clysis" is, but all that Brittany has ever needed with her abdominal/pelvic CT's is to drink 2 containers of liquid contrast prior to the scan, and then she also receives intravenous contrast during the scan. However the liquid contrast always makes Brittany feel very nauseated, so we are very grateful that she is not required to drink it with the MRI and has been feeling much better following her scans now that we have switched from abdominal/pelvic CT's to abdominal/pelvic MRI's. She continues to receive chest CT's since there is too much breathing movement of the lungs for a chest MRI to be done, but thankfully she does not have to drink contrast for the chest CT. Since ASPS can and often does metastasize to the abdominal and pelvic areas, I strongly encourage you to pursue either an abdominal/pelvic CT or MRI for George to ensure that there are no mets in those areas of his body, and if there are, to obtain treatment for them at the smallest most treatable size.
With special hugs and caring thoughts for you and George, healing wishes for George, and continued Hope,
Bonni

[Jorge]

Thanks for the info, Debbie. It looks MRI is better than CT for abdomen and pelvic.

Olga,
Sorry, I didn't make it clear. Actually, the abdomen and pelvic CT were requested. But before the examination, the radiologist says to do the pelvic CT, intestinal lavage has to be done before it. So George only had the abdomen CT, without contrast. I was asking how to check the pelvic.
In the abdomen CT Ivan had, which organs are covered? Is the prostate, bladder, guts etc organs in the pelvic covered? The abdomen CT we have here don't cover the 3 organs.

Bonnie,
Here to do a pelvic CT, the patient should drink 250ml mannitol to cause a diarrhea to clean the intestine--I thought that's called clysis or intestinal lavage My poor English.
I completely agree with you that we should schedule a pelvic MRI. But George is kinda contradict to all these scans. Another headache for me!

[D.ap]

Josh - this is how the comprehensive CT with the contrast is done - first they do a CT without a contrast, then the contrast is given and a CT with contrast is done - they compare two results and get more info. In general, the dead tissue should look about equal on both scans and viable tissue should look different.

This is a question for Olga and Ivan

After the procedure with Dr Rolle are all your ct scans with contrast still lighting up on the ablated tumors in the lungs even
though the tumors have shrunk?

In other words how long after the procedures did you notice in the scans a decrease in blood flow to the ablated lung tumors? Thats in the CTs with contrast.




Thanks in advance
Debbie

[D.ap]

In reference to the above question I realize there is viable and then there is necrotic tissue. Can they be interpreted as both on the scan a year after ablation ?

Debbie

[D.ap]

In reference to the above question I realize there is viable and then there is necrotic tissue. Can they be interpreted as both on the scan a year after ablation ?

Debbie

Found the answer
Should of read back a ways

Re: The Comprehensive ASPS Scan Schedule & Discussion + Advi
by Olga » Tue Oct 08, 2013 8:12 pm
Josh - this is how the comprehensive CT with the contrast is done - first they do a CT without a contrast, then the contrast is given and a CT with contrast is done - they compare two results and get more info. In general, the dead tissue should look about equal on both scans and viable tissue should look different.

[D.ap]

Re: George From China - Dx 2007
by Olga » Tue Apr 15, 2014 11:33 pm
Debbie, Ivan's brain met (that was resected past June 2013) also grew very fast from nothing to almost 10 mm...
Olga

How about brain scans?
If they can grow at such a rapid rate how can the scans keep up ?

Debbie

[Olga]

Debbie, ideally the ASPS patient with known and treated brain mets should have brain MRI more often then someone without known brain mets, i.e. MRI every 3-4 months versus once a year scan. But there is an issue of the money/insurance not willing to pay for it that often or if we speak of Canada where we have provincial government paying - we have less MRI scanners, less staff to read the results and less availability, they can not schedule the scans that often all the time. Ivan had his brain scanned every 3 months initially after the brain surgery and now they moved him to a once in 6-7 months period. The good news is that even if some more active met grows fast from 0 to 8-10 mm in 6 months the treatment plan is still the same - it is the ideal size for the radiosurgery and for the surgery - provided it is done very fast after the met is found. But for the people without known brain mets doing MRI once a year might be a problem. May be CT scan has its merits after all as it is a cheaper scan with good availability and at least it can rule out bigger mets - it misses small brain mets of few mm size but it would not miss the met that is 10 or more mm so that met would be timely addressed. May be alternating schedule - CT once a year and MRI once a year with the 6 months lag in between them - makes a sense.

[D.ap]

Hi all

Connie has requested a PET scan for Kevin as it is..denied
Any thoughts?
the scan which is not only a PET but an MRI would be

1) all inclussive of a scan --a one stop shop scan
2) Easier on Kevin as he is having breathing problems due to tumor load in lungs? Ever try to have a compromised lung and sleep on your back let alone lay for over an hour and your back? Gravity is NOT your friend no matter how little your girth is my friend. The added weight causes a cycle of breathing problems.

Found this National Cancer Biology Institute write up on PET/MRI imaging. The best of two worlds

http://www.ncbi.nlm.nih.gov/pubmed/25024516

Love...

Ps Link to Ncbi--defintion and info

http://en.wikipedia.org/wiki/NCBI

[Bonni Hess]

Dear ASPS Community Members,
Based on her recent very frightening and potentially fatal brain met situation, ASPS patient and Board member Amanda has issued a passionate plea for everyone to be very pro-active with scheduling regular and apporiate scans. As a result of the sudden onset of symptoms from an undiagnosed 2.2 centimeter brain met, Amanda was emergency hospitalized and underwent a thankfully successful surgical removal of the large brain met in her frontal lobe. However, if the met had been located in an unresectable portion of her brain, it most likely would have tragically been too large for successful treatment with radiosurgery such as Gamma Knife. Amanda had a previous brain CT which did not show the met because as Amanda has now learned the hard way, brain CT scans are NOT adequate to show brain mets at their smallest most treatable size! Please heed this critically important warning and advice and do not allow your doctor to convince you to only have a brain CT, or to wait until you develop symptoms which may then be too late for a successful treatment and outcome. DO NOT ALLOW YOURSELF OR YOUR DOCTOR TO BE NAIIVE OR TO BECOME LACKADAiSICAL REGARDING HAVING REGULARLY SCHEDULED AND APPROPRIATE SCANS!! YOUR LIFE MAY DEPEND ON IT!!
With special concern, caring thoughts, and continued Hope,
Bonni

[Amanda]

Greetings,
I am healing from two very hard surgeries one of witch was a tumor in my brain.
I ran around an ignored signs an did ct. on my brain

Doctors care for patients an hate saying things that frighten us. An if you say you feel great an you seem 100% they tell you to scan and run out happy an feel on top of this sarcoma

Hun you are not an I know I would bounce out like tigger. But this tigger never because of fear listened an MRI my brain what an idiot I was. I had escaped the scan

I was happy showed very few signs an all could be explained an I would take Advil or another over the counter

I was not responding to calls I was unconscious on my bed I am by the grace of god alive an if I would have scanned the 2cm tumor would have been found
The ct scans didn't show this an I was being scanned at not a sloppy outfit!

I am pleading with the parents that the dr are saying don't scan an the triggers out there like me!

Please MRI bone scan an ct... I am in bed lucky to be alive! This is reality an I know you are frightened damit I am also but please her scanned so it can be fixed easier then that I did an if you have wee little ones it's your responsibility to look under every stone

If you really catch this an scan an stay on this you have a chance of Ned for the babies an young ones

I need to lay down but read the e hell I am going thru from not doing this

I know you are frightened I am also


UPDATE
I would like to add mood changes to a sign to MRI as fast as possible!!!
I had this an asked neuro psychologist am when any tumor is near or created swelling ti will effect the frontal lobe
Please even with out pain ASAP MRI <3

[arojussi]

Idea of treating asps with aggressive scanning and surgeries is very specific for asps . Only few other cancers like renal cell carcinoma can be treated this way. At first I believed that mistake during surgery would be biggest danger, but now I believe mistake by radiologist is even more dangerous. So radiologist might not be aware how important his reports are for us. Most cancers are treated as systemic disease were single new tumor doesnt make big difference. It is very difficult to see difference between normal tissue and met sometimes. So possible tumor can be ignored until it grows. Having regular scans isn't enough unless skilled radiologist reviews scans. Also it never hurts to ask second opinion. Finding mets at the smaller size and treating them immediately is safer and cheaper than having dangerous surgery for bigger met. I trusted my radiologist because Idea that I couldn't trust him was too scary. That was big mistake.

[D.ap]

Hi Jussi
Looking thru 4 years of posts
We having Asps, are a select group .
Always , always we should be made aware of the smallest possiblity of a tumor to be noted and be addressed . PERIOD
Thanks for bumping this topic for discussion
Love
Debbie

[Bonni Hess]

Dear Jussi, Thank you for emphasizing the critical importance of being very pro-active and well informed with scans and scan results. In our situation, we had always insisted on personally viewing and reviewing Brittany's scans with the oncologist and receiving a written copy of the radiologist results for our records and scan results comparisons. However, 10 years ago when Brittany's excellent primary oncologist took a new job and relocated to Dana Farber in Boston, the head of the Sarcoma Department was acting as interim oncologist until a new one could be hired. Because the interim oncologist was "too busy" with his head of Department responsibilities and his temporary patient care load, he rushed us through our appointments and told us that he didn't have time to look at and review Brittany's scans with us, and that it wasn't necessary to do so because the radiologist report said that everything was "stable"... Having read the radiologist report and naively trusting that it was accurate, we reluctantly agreed to not personally view and review the scans. Had we been able to personally view the scans, even as lay people we would have definitely been able to see the large spinal mass that was clearly visible on the chest CT but inexcusably went unreported by the radiologist and obviously was not even looked at by the "too busy"... interim oncologist who irresponsibly relied on just reading the flawed radiology report. Consequently, the large dangerous met was not diagnosed until it became symptomatic causing Brittany upper spinal pain for which we immediately requested an MRI. Tragically, this mistake almost cost our precious Brittany her Life, and has heartbreakingly left her with severe, chronic, debilitating, untreatable post op pain. Doctors and radiologists CAN and DO make mistakes, and the burden is on the patient/patient's family to to be VERY pro-active, well informed, to insist on personal viewing and review of all scans, and to ask as many questions about the scans and the scan results as necessary. With continued Hope, Bonni

[Ivan]

I have added echocardiogram as a recommended scan to follow the heart on a yearly basis.