Martin from Macedonia - Dx Jan 2015

[MartinBube]

Hi Bonni,

I'm having a lots of thoughts regarding a second surgery. I'm hearing too many different opinions.
Oncologist from one side say their protocol and the surgeon says in case there is something there we can spread it...it just makes it difficult to decide.
I was advised by him to send a tissue sample abroad just to have 100% confirmation so next Thursday I'll travel to Vienna General hospital to see a sarcoma Oncologist and give them the tissue sample to do all chromosome test to confirm the diagnosis. (this was one of the surgeons doubts as he said "I do not want to give you false hope, but I have had a patient recently diagnosed with sarcoma that turned out to be something else")
After this probably I will decide on additional surgery or not, however I'm not sure how much time I do have.

Mainly now this thing with the liver is very concerning to me and maybe I'll have the luck to do the MRI even tomorrow, since I'm one off case it does have some advantage when you need to do something really fast like the scans

[Bonni Hess]

Hello again Martin and thank you for your very prompt response and updated information. I am so sorry for the difficulty that you are experiencing regarding the different oncologists' contradictory recommendations for a second surgery to the primary tumor site. I think that you are wise to pursue a definitive confirmation of the ASPS diagnosis because diagnostic mistakes can be made in correctly diagnosing this extremely rare and little known disease. I applaud your very pro-active approach, and I am holding very tight to Hope that a misdiagnosis was made and that you actually have a much more treatable and less challenging disease than ASPS. In the meantime, I think that the liver MRI should be your highest priority and am grateful that you may be able to have the scan as early as tomorrow. Take care and keep in touch as you are able.
With ongoing deepest caring, healing wishes, and continued Hope,
Bonni

[D.ap]

Hi everyone,

just got today another reading on my CT scans from another radiologist and there is only one thing that concerns me:

the radiologist here in Macedonia did see "cyst on the liver" with size 5mm with no recommendation

the radiologist in Turkey has written "lesion up to 7mm" also says that from the CT can not really say if it is a met or not. Suggest MRI on the liver with dynamic contrast.

As I read this today I got really pissed off that no one here said anything like this. I'll be going tomorrow to check when will I be able to do a MRI

really not sure what to think..

Hi Martin,

Believe you me there is not one patient or family member with ASPS who hasn't been MAD at one time or another
Having been active in sports I will say get mad at the ball and make that anger work for you not against you if AT ALL possible

I just found an article on Liver imaging and wanted to link it to you
We've had other patients encounter liver lesions and I am trying to figure out who they were
Hemageonomas can look just like malignant lesions
Debbie

[MartinBube]

Hi Debbie,

I can not find the link..

additionally today I scheduled the MRI for tomorrow early morning. Was going to do it today but the University hospital scanner was full with a lot of kids from some reason and they moved me for tomorrow.

Also I saw another surgeon who apparently had cases with other types of sarcoma and was on the opinion to have additional surgery with much wider margin even if possible up to 5cm which I found a little bit crazy. this is still the question "to be or not to be" for me.

Anyway tomorrow is the MRI I hope I'll agree with the radiologist to give me the result till Friday if possible.

thanks to you all

[D.ap]

http://www.cureasps.org/forum/viewtopic.php?f=3&t=1027
You were too fast in RSVP

[D.ap]

Martin
Here is one patient and his families recount of their experience with the liver
You could PM Cheryl and ask her questions
The article on liver imaging reminded me that the radiologist makes the difference in the care of staying on top of imaging and ASPS.

http://www.cureasps.org/forum/viewtopic ... t=15#p6104


Dr Littrup is a renowned radiologist here in the state

This is his old info but perhaps the office can forward you to his new office in Rhode Island?
http://www.cureasps.org/forum/viewtopic.php?f=55&t=1003

[MartinBube]

Thanks Debbie,

seems discarding one over another is very difficult job to do. I did sent my scans to my cousin in the UK so that an experienced radiologist takes a look at them.

Is there a possibility that I contact doctor Littrup to send him CDs from here?

Additionally I read every day a lot regarding Cannabis oil and the fight with cancer. is there any truth in that? Do you know someone that has been using it?

thanks
Martin

[Bonni Hess]

Hello again Martin,
Debbie has shared some helpful and encouraging information regarding another ASPS patient's experience with a liver lesion which thankfully was ultimately determined to be a benign hemangioma. Hopefully this will be the case for you, and it or some other type of benign lesion will be confirmed by your tomorrow's liver MRI. Regarding the sarcoma surgeron's recommendation for you to have the second surgery with up to 5 Cm. margins, is he aware that there may already be vascular invasion as indicated in the one pathology report, and is his surgical recommendation based on the Hope of preventing metastasis (which unfortunately may have already occurred if there is vascular invasion from the primary tumor) or primary tumor reoccurrence or both?
My special thoughts and very best wishes will be with you for benign results from your tomorrow's liver MRI and I will be anxiously awaiting your update on the results when your time allows.
With deepest caring, healing wishes, and continued Hope,
Bonni

[MartinBube]

Hi Bonni

honestly I'm not sure but for sure I will speak with him again as I complete all other activities. He read the report but said nothing about it (maybe he did not even read all), his assistant said radiation would not help much and it is in region where the one of the kidneys is so it may do some other damage. Until now whenever I ask any doctor regarding the signs of vascular invasion noone knows what to say

hope to get finally answer next week in Vienna

Definitely I will not do anything before I get to Vienna Hospital next week and hope the thing with the liver will not be serious otherwise I'll have to look for a way to remove it very fast.

A part from that since yesterday I starting jogging again after one month break from my surgery, and I feel that doing that or other sport is the only thing that keeps my mind in good mood

[D.ap]

See post

[Olga]

I am not sure why Dr.Littrup's opinion is discussed here? First MRI has to be done and discussed locally, and it is usually not that a big problem to find out what the suspicious lesion in the liver or other area is. Dr.Littrup reviews the cases when the patient is asking him if he is able to treat them, so he basically reviews the perspective patient's case. There are other ablation drs in Europe that are very high level too, cost less and are closer to Martin. We do not even know if he needs any treatments yet, benign nodules in the liver and kidneys are very frequent.

[Bonni Hess]

Dear Martin and Debbie, I agree with Olga that consultation with Dr. Littrup is not appropriate or necessary at this time since there are currently no known mets that would need to be ablated, and even if the liver lesion is determined to be an ASPS met there are well qualified resources available for ablation located much closer in Europe and Asia. With special caring thoughts and continued Hope, Bonni

[D.ap]

Bonni and Olga
In reference to your posts above
Dr Littrup sat in on Todds , Cheryls sons ,liver consultation and brought an opinion to the table for their family.

I posted above about Todds experience to Martin and he consequently inquired to whether he could send cds to dr Litrupp
My response was late however being new to the forum I felt he needed the link from our forum if that's the way he needed to go

So I forwared it to him

In my mind there can't be too many opinions on a scan .Scans can be interpreted in a lot of ways
I think we are all adults. I am sure dr Littrup can speak for himself if it is not something he can weight in on by way of opinion
Respectively and with all my love

Debbie

[Olga]

Deb, Dr.Littrup is a great doctor and amazing person but if we will recommend people to use him to read the routine scans, he is going to be overwhelmed by work that could be properly done by any qualified local radiologist, and will loose his valuable time that he could dedicate to more highly specialized task, helping other people in need of the complex ablation procedures that could not be done by the reg. ablations drs.There are of course complex cases and desperate times as it was with your son Josh when his centrally located lung mass was misdiagnosed as a very progressive ASPS met and only Dr.Littrup's and Dr.Rolle's opinions helped to avoid the totally unnecessary and harmful radiation treatment that was proposed by local drs. But it is totally not the case with Martin at this stage and being in the beginning of his journey with ASPS he has to receive the best advice from us re. how to organize his life with ASPS. He needs to create the reliable and sufficient support system locally, learn more about ASPS and scanning, and deal with the situations in the most efficient way - not to overreact but be very vigilant and be ready to go out of system when/if needed. As of now, I do not see any reason for that.

[MartinBube]

Hello everyone

thanks to you all regarding the latest posts. I'm just trying to find a very good radiologist that I can trust and also have an alternative when reading my results.

I did the Liver MRI on Thursday and the radiologist says that still his opinion is that it is a cyst, because it was not colored at all with the contrast. Still I'll bring my CDs next week on my trip to Vienna and ask also there someone to take a look at them.
I guess for now I'm done with scans until the late April or May. I believe 4 months from the first scans would be sufficient.

In the meantime I'll try to find an oncologist that will give me more directions and definitely decide whether to do another surgery.

many thanks to all and have a good rest of the weekend