Martin from Macedonia - Dx Jan 2015

[Bonni Hess]

Dear Martin and Olga, The abdominal/pelvic MRI is a much better scan option than an abdominal/ pelvic CT because of the concerning radiation exposure factor with CT scans, and the MRI is also more definitive. After too many years of abdominal/ pelvic CT scans and radiation exposure, Brittany now has only abdominal/ pelvic MRI's for those areas and the MRI is able to successfully scan the entire abdominal/pelvic area. The main obstacle to obtaining MRIs instead of CT scans is usually insurance coverage since MRI's are much more expensive than CT scans, but preventing radiation caused malignancy is worth it and we strongly feel that abdominal, pelvic, and brain MRI's should always be done for ASPS patients instead of CT's!! With special caring thoughts, healing wishes, and continued Hope, Bonni

[MartinBube]

HI Bonnie,

the only thing is that I'm not sure if the MRI is more definitive. Last time I spoke I was told that the precision and resolution (at least on my scans) was much better on the CT since it took a lot of slices and the MRI would not be able to be set like that. Anyway I'll wait till the next scans luckily here the doctor would give me the MRI for abdomen and pelvic. Our insurance here (covered by the state ) will not make a problem if it is needed.

Here usually if the doctor writes that you need MRI you will get the MRI the problem if is you need it urgently sometimes you need to wait. Since I have 4 months to schedule it is not an issue

[Bonni Hess]

Hello again Martin,
The main issue/concern with the CT scan versus the MRI is the radiation exposure, and as Olga indicated, with ASPS being an indolent more long term disease there are often years of scans that need to be done to adequately monitor the disease which results in an enormous amount of dangerous radiation exposure from innumerous scans through many years. In Brittany's case, throughout the first twelve years of her ongoing ASPS battle during which she concerningly received CT scans usually every three months, we were never told by any of her oncologists that abdominal/pelvic MRI's could be done instead of CT's, so we assumed that we had no choice except to risk the radiation exposure from CT scans in order to vigilantly monitor her disease to ensure that any new mets were found at the smallest most treatable size. When I found through my research that abdominal/pelvic MRI's CAN be done, unlike lung MRI's which cannot be done because of the movement of the lungs, our request for Brittany to have abdominal/pelvic MRI's instead of CT scans was thankfully immediately addressed and approved by her extremely dedicated Clinical Trial oncologist (Dr. Michael Sawyer) and the sponsoring pharmaceutical company ( Astra Zeneca). It is very difficult to understand why, and very frustrating that, oncologists continue to order abdominal CT's instead of the much safer MRI's for ASPS patients given the radiation exposure concern, but since this seems to be the norm, the responsibility rests with the patient/patient's family to be pro-active in requesting/insisting on MRI's instead.
Take care Martin and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[MartinBube]

Hello everyone,

Its been some time that I have not updated but mainly I had no things to do. I've been following the forum weekly or daily depending on my work

in this period I had few consultations regarding radiation which at the end I decided not to do based on doctors opinions and what I have read here

last 2 weeks I did, CT of chest, MRI Abdomen and MRI Pelvic area all with contrast

- CT of chest is clear. when I do this I'm having very bad reaction on the contrast, I have pain in my chest and than tendency to throw up for short time

- MRI Abdomen basically the liver is same as last time. The "cyst" is still the same dimension not having any colorization with contrast. Only different thing is that last time they told me there are 4 cysts now they see only 2, which is strange

- MRI pelvic I did it today and I should have the result in 7 days

I can not say how happy I was when I heard the result and how painful was to sit and wait.
Until now it has been 9 months since I noticed the lump and almost 6 from first surgery

Very interesting is that the radiologist that looked at thees told me that next time he can do a full body scan with MRI only. when I said but the lungs are moving, she said that she has been on training in Germany where people used to do this. Still I believe that the CT is more precise for the lungs and I'll stay like that.

This week I might go for second opinion on reading the results just to make sure all is OK, and I can relax a bit till October for the next scan.

Regards, to all

[D.ap]

Hi Martin
Glad to hear of scans being performed.
So sorry to hear of reactions.

Did you recieve iodine or gadolinium ?
You defiantly need to note it in your records

http://www.ncbi.nlm.nih.gov/m/pubmed/21780275/

The liver is a trickey thing to be scanned accurately.

However good to know of no noted growth

Thanks for update
Love
Debbie

[Olga]

Hi Martin, the results of yous scans are as good as they can be. The cysts on liver are pretty common and the fact that some of them dissolved supports their benign character, just keep an eye on them. The contrast might be an overkill for now, you might be good with the non-contrast scans until there is a real suspicion for mets. Some people are really allergic to some contrast mediums, talk to the radiologists what could be done. In some cases there IV liquids are done to help to wash the contrast out of you body, or something else.
The MRI body scan sounds interesting. There are new types of the MRI units now avail. in some places. I just read this abstract for the new article
Value added: functional MR imaging in management of bone and soft tissue sarcomas.
http://www.ncbi.nlm.nih.gov/pubmed/26049272
looks like lots of news in a scanning field out of there. We have a patient from Finland (no personal Story though) who is also having a full body MRI.
But in general since the lungs are usually the first organ to get mets from the ASPS, I would keep an eye on the lungs with the CT scan, non contrast - this is how Ivan's mets were found first. You can just move to once in 6 month CT after 1 year.

[MartinBube]

Do you think that I should do also a brain MRI?

My oncologyst did not asked for it but if I insist I believe she will.

[Olga]

Your brain is more probably free from metastasis - there was an article that in ASPS the brain mets almost always come after the lung mets. But since ASPS often metastasize to the brain it is reasonable to request the brain MRI - so if you can do it for free or cheap, I would have it especially hoping it is a good one - at some point of your life you might be grateful that you had a clean one for a baseline, makes it easier to identify the changes if there are any.

[MartinBube]

I will talk to my oncologist. I had one done in February which showed good and clean results. However since I had 3 contrast screenings I would do it in July it would be almost 6 months from the first one in February.

thanks

[Olga]

Martin, I think that you do not need a brain MRI with the contrast for now. Contrast is beneficial when there are any treatments/ablations done to the mets so if there is a new growth from an old scar it is pretty visible with the contrast. I would say that for the people with no known lung or brain mets, once a year brain MRI with no contrast is sufficient.

[MartinBube]

Hi everyone

After 4 relaxing months and a hot summer today was my 4 months scan check so I had just an MRI scheduled and the radiologist did a Full Body MRI on me, head, neck, chest, abdomen and pelvic. her idea was to avoid using the CT so much since every 4 months is not a small amount of radiation. It takes tooo long but I feel much better than the contrast from the CT

On first look as she looked through all the images said that there is nothing that she sees but will take her time in looking at the result.

As we were discussing and I'm basically suspecting everything I've asked doesn't she feel that a CT is necessary for the Chest also since I've read that MRI can not catch anything below 3mm, although probably can give some king of suspicion, so just to be sure we made a CT without contrast. Unfortunately I do not have any result from the CT but should have during this or next week.

I've read a lot of personal stories here but I have not seen anyone using a MRI for chest to avoid the radiation, do you believe that MRI could be sufficient?

thanks Martin

[D.ap]

HI Martin

Good to hear from you

Last CT was in Feb?

I agree that the CT needs to be used sparingly as to reduce a cancer patients body to minimal radiation

Found this write in 2012 on MRI and the lung






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/
Love
Debbie

[MartinBube]

Hi Debbie,

No my last CT was in June. basically this was the 3rd CT in a year

[D.ap]

Martin
How's the liver 7mm lesion looking?

Debbie

[D.ap]

Bonni's post in april

Dear Martin and Olga, The abdominal/pelvic MRI is a much better scan option than an abdominal/ pelvic CT because of the concerning radiation exposure factor with CT scans, and the MRI is also more definitive. After too many years of abdominal/ pelvic CT scans and radiation exposure, Brittany now has only abdominal/ pelvic MRI's for those areas and the MRI is able to successfully scan the entire abdominal/pelvic area. The main obstacle to obtaining MRIs instead of CT scans is usually insurance coverage since MRI's are much more expensive than CT scans, but preventing radiation caused malignancy is worth it and we strongly feel that abdominal, pelvic, and brain MRI's should always be done for ASPS patients instead of CT's!! With special caring thoughts, healing wishes, and continued Hope, Bonni