Martin from Macedonia - Dx Jan 2015

[MartinBube]

Hi Olga

Yes the MRI is Monday however but I might move it for Wednesday since I did got scheduled for the Bone scan for Monday Also and if I miss that I will have to wait for a week or more. I'll have to pay for it privately since there is no contrast fluid for the one that is covered by my insurance "the state medical center" and they do not know when it will come.

Well not sure why I say that probably out of fear at this moment or from doubt that not all was completly removed although pathology and the surgeon did say that all is removed. looking at the complete picture since beginning when no one even suspected anything till now I doubting all that they say.

After these 2 scans I'll have to make a decision for second surgery that most probably I'll have to do as almost all the oncologist did suggested this I'm just trying to pick the right surgeon to do it.

[D.ap]

Martin

Hi there . I am home from work today and noticed your post.
I am so sorry that it feels like you are the only one you can trust as far as doctoring goes.
Having this cancer ages a person and his family and certainly make them all come to that very feeling of helplessness and conclusion most days.
However after some good sleep and good friends and family input, I am confident you will make the choice that is best in your mind!
This is a link copy written in 2002 on the NORD (national organization of rare diseases) website.

Please note the stats on the percent of patients that were documented to have had ASPS.

General Discussion

Alveolar soft part sarcoma (ASPS) is a rare sarcoma (malignant tumor of connective tissue) of an unclear cause. It is among the least common sarcomas, representing 0.2-1 percent of large studies of soft tissue sarcomas. Since there are approximately 8000 soft-tissue sarcomas per year that arise in the United States, this means there are on the order of 15 to 80 cases nationwide each year. It is characterized by a painless mass in the leg or buttock, with a particular affinity to travel to the lungs as multiple nodules, presumably while the sarcoma itself is still small. ASPS, is very rare, because it involves a specific breaking and joining event between two chromosomes, called an "unbalanced translocation". This finding is observed in essentially all ASPS examined so far. This finding cannot be passed on to children, however, as the finding occurs only in the tumor, not in the normal cells, in addition, there are no families in which multiple family members have ASPS.

Treatment is with surgery and radiation for the primary place where the sarcoma arises. For disease that travels to the lungs, sometimes surgery is possible to remove nodules, but more typically chemotherapy is the only option for treatment. This tumor tends to be resistant to standard chemotherapy, so new treatments involving new chemotherapy drugs are also a reasonable option for treatment. Interferon-alfa showed benefit in one person from Japan with ASPS. There is little other data on possible helpful chemotherapy for this tumor.




Doctors can't always have the answer unfortunately and we all need to weight the costs AND benefits in any descion(s) we make with in our care


http://www.rarediseases.org/rare-diseas ... FullReport

Love to you and yours
Debbie

[MartinBube]

I did a Bone Scan yesterday that thankfully showed nothing. I'm scheduled to do a MRI on the primary site on the pelvic area tomorrow and with that I'm going to the surgeon.

I got an email from a surgeon from Austria that I got recommended but since he replied late I had already made some arrangements here in Macedonia. The cost is incomparable and seeing that the one here also is a good one and has experience in sarcoma I would stay here.

Maybe I will be doing the redo with a wide resection on Friday. Still not 100% sure if this is the right way but since all of the oncologist suggested this and I'm an engineer I'll have to listen and do what they say

best wishes to everyone

[D.ap]

Martin

Great news on bone scan.
Thanks for thinking of us and letting us share in your good news.

Thoughts and prayers coming your way on your MRI and up and coming schedules

Love
Debbie and family

[MartinBube]

Hello Everyone,

just a short update

I had my radical surgery done on Saturday, all went well. I'm walking with no issues even I feel less pain while walking from last time when the surgery was less radical I'm experiencing still heavy headaches from the spinal anesthesia though. Hope they will pass by today.

I have the tissue sent to analysis here and will see the result this week.

what is interesting is that the tissue from the primary tumor that I left in Vienna for second opinion is still not ready. I'll be traveling there on the 26th to see the oncologyst again to talk how to proceed further.

Next scans are in April.

[D.ap]

Martin

Glad to hear of the minimal pain as well as the surgery being behind you.
Keep drinking plenty of water to wash the anesthetia out of your body.
Here's to a fast recovery!
Love
Debbie

[Bonni Hess]

Dear Martin,
Thank you for your thoughtful update. I am so glad that the surgery went well and that you are already ambulatory and recovering with minimal post op pain . I Hope that your anesthetic headaches resolve soon as they can be so very debilitating . Have a good and speedy recovery giving your body time to heal from all that it has been through these past couple of months. Safe travels to Vienna next week. I will be anxious to hear the results of the tumor tissue pathology analysis and your oncologist's treatment recommendations, and will look forward to your next update. In the meantime, take care and get plenty of rest while your body recovers and heals.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[MartinBube]

Thank you Bonnie and Debbie,

Just to update that I got the pathology results from my second surgery that there was no ASPS found in the surrounding tissue which I suppose is good but since this is a vascular tumor I have not seen that anyone had local spread.

Also on email I got the pathological finding from Vienna that they confirm the diagnosis. it is in German so this is the translation that Google can do for me, there are some words that it does not translate, I do know basic German but this is far away from what I can understand

In the sent block material is found embedded in fat tissue, a
relatively circumscribed, everywhere bindegewebig any encapsulated, mesenchymal
Tumor. To display comes from a relatively monomorphic cell population
large, epithelioid or polygonal cells with eosinophilic granular pale
water or clear cytoplasm. These tumor cells in small nests mitteils
Alveoli-like aspect stored. The tumor cells round-oval with distinct
Nucleoli. In the cytoplasm can be in a D-PAS staining again
intracytoplasmic crystals demonstrate. the immunohistochemical
Workup shows a typical nuclear dyeing behavior of the tumor cells with
the marker TFE-3, all other performed immunohistochemical
Investigations with the markers PAN Lu-cytokeratin 5, EMA, S 100, HMB-45
and desmin showed negative expression profile.

The analysis is not that detailed as the one I had done locally and I personally expected more but they I'll see next week when I will speak with the oncologist there what he has to say.
Thank you all again for the support

PS I just got my head cleared from headache last night after I drank coffee and lemon, all medicine did not help at all

[Bonni Hess]

Dear Martin, Thank you for the additional shared information and the good news that your anesthetic headache has now been resolved with a simple non pain medication Home remedy . It is very good news and reaffirming that no ASPS cells were found in the surrounding resected tissue from your second surgery, but I am sorry that you had to undergo another invasive surgery to receive that confirmation. I Hope that your recovery is continuing to go well and that you are regaining strength and full mobility. Take care Martin and keep the Board updated on the next step on your ASPS journey. With deepest gratitude for all of your thoughtful sharing, and with special caring thoughts, healing wishes, and continued Hope, Bonni

[MartinBube]

Hello Everyone,

this is the last update since I returned from Vienna.

Met the same doctors. They confirmed that the diagnosis is ASPS but the report was not that detailed and from the doctor I did not heard any news regarding the vascularity of the tumor. He suggested that I go on radiation after this.

The second oncologist that I met, is not very confident that radiotherapy would do any good on me because of rarely seen atypical single mitosis up to one / 10HPF and proliferative index between 2% and 6% with a median value of 4%. and also since it is close to the spine and reproductive system it may do more damage than good.

I'm not really sure what should I do about the radiotherapy I'll visit the oncologist here next week just to hear another opinion. I'm more prone to not do it.

Regarding distant mets both said at this moment no one can predict what can happen, and regular scans are very important.

I'm trying to get back as much as possible to a normal life although I'm struggling to find inner peace somehow and as soon as the next scan gets closer it will become worse but I'll try.

regards, and prayers to everyone

[MartinBube]

after few cases that I have read for liver mets I have become very terrified of my current situation.

On my CT abdominal scan it showed a 7mm lesion on the liver, than after doing an MRI 3 more were seen with 5mm dimension. This is somehow leading me to a conclusion since I did the Chest/Abdomen/pelvic at the same time that the resolution on the chest was 7mm and it did not catch anything that was lower than this.

Does the CT work in this way or it will still show something which is smaller but not well defined?

I'll try to talk to the radiologist next week because if so I would like to repeat all scans and not wait for another 2 months until the 4 month check up.

[MartinBube]

Hi everyone

just a short update after some time. I've been talking with another radiologist regarding all the questions that I had and the possible liver cyst and my concerns regarding the CT resolution

As he explained my CT is done with very big precision basically I have 600 resections on the CT done. His opinion is that since the CT did not showed additional mets on liver it is impossible the MRI to show since the resections that the MRI does are with less resolution and explained that the liver is an organ that is not 100% solid has "sponginess" inside or something like that and that all the things visible can not be treated as a met or anything abnormal. He looked at them very carefully and additionally did a regular X ray on my chest which personally I'm not sure how much it can show.

Additionally I would like to ask what is your opinion on radiation. I had some different opinions whether I should or should not do. Seeing that there was nothing found in the second radical surgery, very small mitotic rate 1 per 10 HPF I'm not actually sure if it can do more good than damage.
Additionally I'm still recovering from my second surgery and still having pain and discomfort, and probably any radiation will slow the process of healing.

thanks
Martin

[Olga]

Hi Martin,
Ivan did not have radiation of the operated site after a post-redo surgery, and it was not recommended to us. He did not have a local recurrence. There is no proof that it is beneficial for the very slow growing sarcomas, especially after re-resection with the big margins. Some of our patients had it, some not. Most who had it, had some side effects from it - post-radiation fibrosis, stiffness. It also affects the healing. There are other sarcoma types where it is clearly beneficial but not ASPS.
Your CT of the liver was done with 600 slices (multislice CT), was it done with the contrast? The MRI is considered to be a better scan for liver based mets, but also you can have the second scan in few months to see if this thing is still there and if it increases or decreases, that will be enough information to start arranging MRI or to drop this subject.

[MartinBube]

Hi Olga,
yes the CT was done with contrast. I'm thinking for the next scan to go and have a chest CT but abdominal and pelvic MRI. to try and avoid the radiation from the CT

[Olga]

It is always better the have abdominal and brain MRI for the check up instead of the CT scan because of the long life time expectancy and life long need for the follow up scanning in ASPS patients. Some of our patients managed to negotiate to substitute the abdominal and brain CT with the MRI. I am not sure re. abdominal MRI though - Ivan gets abdominal MRI of the specific location like adrenal site, but not all the abdomen, probably it is to big of a site for MRI?