Martin from Macedonia - Dx Jan 2015

[MartinBube]

Hi Debbie,

On last scan in June was the same. Today did not get detailed results yet but I'll see in the next days.

Will let you know.

[Bonni Hess]

Dear Martin,
Thank you for your thoughtful update. I am so grateful that the radiologist's preliminary review of your Monday's four month scans showed stable disease with no new tumors, and I will be anxiously awaiting your update on the finalized report which will Hopefully confirm the findings of the preliminary review. I am grateful too that you are receiving abdominal, pelvic, head (brain?), and neck MRI's instead of CT scans to prevent radiation exposure and possible damage. I am perplexed about the chest MRI because we have always been told that it is not possible to do chest MRI's because of the movement of the lungs when the patient breathes, and MRI's require that there be no movement in order to obtain accurate results. Perhaps Olga or someone on this Board can help clarify this issue. I am so glad that you had a relaxing summer, and I Hope that will continue in the coming months with you feeling good and having continued stable disease. In the meantime, take care dear Martin and keep in touch as you are able.
Sharing the great joy of your good preliminary scan results with happy hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Olga]

Re.Chest/lungs MRI - there are some technical advances happening that they are able to use it now for the moving objects - I have heard from other patients from Europe that MRI is used for the lungs now - but in US and Canada all our patients get CT scan. The contrast is not necessary every time. To reduce the exposure the CT are interspersed with the simple X-Rays - to catch some sudden growth - which usually does not happen with ASPS. The more valid strategy IMHO is to increase the inter scanning interval to 6 months during the first 2-3 years and go for once a year if there are no known lung or other mets.
Ivan had a MRI of the ablated adrenal area recently and the radiologist in addition to the area under study described all what was seen in the field incl. the lower portion of the lungs. Since Ivan also had a CT scan about the same date, we could compare the readings and they matched in the portion of the lungs that was seen on both CT and MRI.

[MartinBube]

Hi Olga and Bonnie

The way the MRI was done on Lung was with various holds of breath of round 20sec. As I was laying in the MRI they just call " do not breathe " and after 20sec they release you to breathe again.

that repeated numerous times and that was the way they did it. But probably to compare and to be sure, this time I did additionala a Chest CT with no contrast and waiting to see how it will show on the final result

thanks to your nice thoughts

[D.ap]

The 2012 write up in pubmed

Insights Imaging. 2012 Aug; 3(4): 355–371.

Published online 2012 Feb 13. doi: 10.1007/s13244-011-0146-8

PMCID: PMC3481084

MRI of the lung (2/3). Why … when … how?

J. Biederer,corresponding author1 M. Beer,2 W. Hirsch,3 J. Wild,4 M. Fabel,1 M. Puderbach,5,6 and E. J. R. Van Beek7


corresponding author

Author information ► Article notes ► Copyright and License information ►

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3481084/

Conclusions

With a comprehensive protocol approach as proposed, MRI of the lung can be readily performed on most state-of-the-art 1.5-T MRI scanners. Breath-hold imaging or triggered acquisitions, together with advanced sequence technology (e.g. parallel imaging and rotating phase encoding), make image quality reasonably robust against artefacts induced by respiratory motion and heart action. Parts of the protocol produce images of diagnostic quality even in uncooperative patients. This allows for appreciation of the specific features of lung MRI related to its excellent soft tissue contrast and functional imaging capacities. The sensitivity of these protocols for infiltrates is at least similar to X-ray and CT. In lung nodule detection, MRI is superior to X-ray and almost as sensitive as CT. A dedicated selection of sequences for imaging lung vasculature allows for the detection of pulmonary embolism with high sensitivity and specificity. In respect to lung perfusion and respiratory motion, lung MRI offers additional functional imaging capacities beyond the scope of X-ray and CT. With this, lung MRI offers not only solutions for tricky problems of daily routine but also is a good option for paediatrics and science or any situation where CT would be (relatively) contra-indicated. A set of dedicated protocols, as suggested in this article, may help new users to get started and to stimulate the further development of this powerful, third modality for lung imaging besides X-ray and CT. Further details on how to use the suggested “toolbox” or “sequence buffet” may be used and modified for specific clinical applications and how future perspectives for further protocol developments would look like will be discussed in the subsequent article of this series.

[Bonni Hess]

Dear Martin, Olga, and Debbie, Thank you for sharing the very interesting and invaluable personal anecdotal experience and published information regarding lung MRI versus lung CT. This is very good news and something which we will explore and pursue for Brittany since we have always desperately wanted to reduce/eliminate the large amount of very concerning radiation exposure which she receives in her regular chest CT scans which she has received an average of every three months during the past 14+ years since her ASPS diagnosis. However, we have very discouragingly always been told that MRI'S can't be used for accurate and definitive lung scan results, and we felt that we had no choice except to risk radiation exposure in order to adequately monitor any new lung met growth and disease progression. I will be anxiously awaiting the comparison results of your chest MRI and CT scan Martin to determine if they are equally accurate. All of Brittany's scans are always done with contrast to ensure that any new mets are found at the smallest most treatable size. With deepest gratitude for your invaluable sharing, and with ongoing special caring thoughts, healing wishes, and continued Hope, Bonni

[MartinBube]

Hello everyone

I got my scan results today and I can not say how happy I am to see that they are all clear. I had done a full body MRI (brain, neck, chest, abdomen and pelvic) and additional Chest CT without contrast just to verify the result of the Chest MRI.

My liver Cyst are same dimension, just that now there is one more. That is strange for me since in February in the result there were 4, in June only 2 and now 3. I will go tomorrow with all the scans to have a second opinion and clear that out.
Even the first time when I did liver MRI one of the radiologist suspected if there is more than one at all since the liver "construction" is not a solid flesh as a muscle and the structure it self can be confusing but I did not had time to catch the radiologist today to clear it out. I'll do that for sure.

This MRI and CT was done exactly one year after I felt the pain in my lower back and almost 9 months since first surgery.

I'm still not sure weather I will exclude CT for the next scans but fore sure I'll try to avoid the contrast and maybe move it to 5 months instead of 4

[D.ap]

Martin
The proverbial happy dance here in the USA
Love
Debbie

[Olga]

Hi Martin, these are the good results. The different number of cysts seen on the scan might be when are smaller than the step between the slices so some of them fall between and not seen on the previous scan and then you move it and it catches more (or less).

[MartinBube]

Thank you Debbie and Olga,

I went today to another radiologist with the result just to have a second opinion. First of all he was astonished of the MRI scan done and said that is basically one of the best MRI which he has seen until now.

no different opinion, just on the detailed look on the liver he believes that there are more than 3 cysts but is pretty confident that they are no mets since they do not have any vascular details nor colorization visible.
Compared to previous results was the same explanation that Olga wrote that the number can be changing depending on the step on the MRI.

Not sure what to believe I'm little bit confused if they might be wrong and these are mets but since February are same in size and get no contrast color. I'm planning to visit a specialist for liver and talk for any possible treatment if they are treatable so I can see if it makes any result on the next scan

[D.ap]

Hi Martin
Talking with our son about his liver scan
His was over 4cm so I am pretty confident there was vascular feed
Remind me of your tumor sizes?
Joshuas brain tumor showed vein feed at 1 cm
However the brain is a vascular highway but so is the liver?
The no lite up part of scan is also a good indication of low metabolic / non cancer activity I think

Seeing a liver specialist is even a better idea.
He needs to become familiar with cases of ASPS to help assess the scan.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922299/

J Med Case Reports. 2010; 4: 233.

Published online 2010 Jul 30. doi: 10.1186/1752-1947-4-233
PMCID: PMC2922299



Olugbenga A Silas,corresponding author1 Adeyi A Adoga,2 Agabus N Manasseh,1 Godwin O Echejoh,1 Raymond A Vhriterhire,1 and Barnabas M Mandong1
corresponding author


Author information ► Article notes ► Copyright and License information ►

Love
Debbie

[MartinBube]

Hi Debbie,

the sizes of the liver cyst are 7mm the largest and it is this size since February, and the other 2 measured 5mm and 4mm, still the same size

[MartinBube]

I went today to liver specialist and explained him the whole history.
He did not look at the MRIs he put mi on ultrasound tomography and he looked at the liver in details.

His conclusion is that there are no cyst nor something malignant in the liver and no other visible lesions. I asked why then on MRI it is showing something like this and does not he feel that the MRI is the best imaging for this type. the described changes on MRI are blood vessels and he saw them also there on the ultrasound.

Again he said that I had nothing to worry since he is very sure that there is nothing in my liver.

I'm really surprised that now I have 3 people looking and 2 results. However 2 are radiologist only and this one today is specialist for liver

This guy that I went to today is one of the best liver specialist in my country that is also a university professor. I exlained the disesase also and he said lay down again I'll look again on another machine. Still the same result.

Maybe I'll check just one more to be sure in the results

[D.ap]

Hi Martin

I had read of the ultrasound technique at some point in my readings . It sounds like a good tool
My feeling is that you very aware of the possible spots on your liver so keeping tabs on them will be part of your future plans to manage ASPS.
So the other tool he used besides the ultrasound was what? Just another ultrasound machine?
Unfortunately a biopsy would be the only conclusive tool to DX and the biopsy is not a good idea because of the possibility of seeding .

Debbie

[MartinBube]

Hi Debbie,

Yes it was just another ultra sound. Maybe better or more precise.

I would not pursue a biopsy at this point of time but for sure I can go to another opinion and see what will they say.