Martin from Macedonia - Dx Jan 2015

[Bonni Hess]

Hi Martin and thank you for the very encouraging update from your liver MRI results . I Hope that the radiologist was correct in his "cyst" diagnosi, and Hope too that his opinion will be confirmed by the radiologist or oncologist in Vienna. Safe and good travels to Vienna with a productive and positive outcome to your oncology consultations, enjoy a relaxing couple of months break from scans, have a wonderful weekend, and keep in touch as you are able.
Sharing the relief and happiness of your encouraging scan results and reaching out across the miles with special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Martin
I 'd like to share in Olga's and Bonnis as well as yourself in all of your rejoicing of good scan results ( yeah !)I'd like to second the well wishes and add prayers for safe travels to Vienna
Love
Debbie

[MartinBube]

Hello Dear friends

this is the latest update after my latest visit in Vienna:

met 2 professors oncologists

- prof. Ludvig who is experienced oncologist in EU and worldwide. Explained my whole story from the beginning, and his conclusion is that he is more for radiotherapy instead of additional surgery. Did inform me for the TKI drugs that are the latest way of fighting this disease but does not have any medical evidence that if I start taking them now I would stop anything in the future. We talked about the vascular invasion mentioned and he said that it is not like it sounds and it does not mean that something has gone out and that mainly all malignant tumors have vascular invasion however I'm still not sure on this.

- prof. Tomas Brodowicz from AKH Hospital who is sarcoma specialist. Also told him everything from the beginning and his current suggestion is to do additional surgery with resection of 5mm more on the spot where there was the first surgical removal and to do additional analysis of the new tissue. In the meantime they will do additional analysis on the tissue sample that I have brought to them and in 2 weeks I should go back to discuss the results and possibilities for future treatment.

Both of them agree that this is very rare that can not give me any preventive at the moment that will stop any spread in the future.
Also agree on that that the proliferation and the mitoses are very very low which they consider it good but again no promises for the future.
Definitely they discard PET Scan for this sarcoma type follow up.

I did ask both what do they feel regarding spread from the second surgery and both have discarded that, saying that if it does spread it will not be from the surgery although I did read some of the links provided here regarding this.

regarding the liver result looking at the report they agree that if there is no painting from the contrast should not be worrying, however they did not looked at the CDs, and I will insist on that that someone does look at them next time. In the meantime I will do some blood test on the liver and see a specialist about that. I would not like to leave anything missed

On Tuesday I will talk with the surgeon that did the first surgery regarding what does she feel regarding doing another resection. If I decide to do it maybe it is the smartest that the one that did the first to do the second also since she knows what did she saw and what to do now, however if she feels that is not certain I will seek another surgeon that I have already talked to.

I also asked regarding food and all those sugar stuff that I've read but both of them said that with this type it does not have much effect although they did not encourage eating junk food.

Honestly I feel that I'm not smart do decide what to do. however I'll need to do something since time is running. Probably will make a decision early next week.

I really wish that all this goes away but it just does not. Still hoping and praying for the best.

thank you all for your kind support

[Olga]

Martin, shouldn't you be sleeping at this hour? I want to point you out that sleeping at night during the times between 12 and 4 am is beneficial for the circadian clocks associated hormones production that immune system depends on and they also regulate cortisol production which is important to keep normal.
Regarding spread from the second surgery - we did not mean that the second surgery causes the spread directly but the surgical stress elevates production of the growth hormones (the mechanism our body uses to heal the wounds), the growth hormones could cause the already disseminated sarcoma cells that are dormant at the moment to wake up and start to grow. This is why the surgery can be a promoter of the metastasis. If the surgery done by the experienced surgeon, the direct risk of spread is minimal especially considering there is no macro disease at the primary site at the moment. How does it heal and when is the next MRI for the primary site scheduled?

[MartinBube]

Hi Olga,

I usually sleep at this time during the week it is 20min past midnight but since it is Friday I have stayed little bit longer

Basically I do not have scheduled any MRI, was supposed to be one month from the surgery which was last week when I did the Liver MRI, however this is what I would like to discuss with the Surgeon on Tuesday. Doing an MRI before the surgery so she can see the place of the primary. looking outside it has healed pretty well, since I did had not so big cut. I've already started jogging last week with no problems.

[Olga]

So you did not have any post-surgery MRI of the primary site? It is a general sarcoma recommendation to have one in 3 months after the surgery (when the healing is over).

[D.ap]

Hello Martin

Thank you for the update.

If I can ask, was your first surgery performed as a laparoscopic type surgery?
And last but not least, would your purposed follow-up surgery be performed along with a much more extensive incision and would you recovery period be longer and with PT?

I am so glad you are armed with more information as it can certainly calm our minds, sometimes.

I really wish that all this goes away but it just does not. Still hoping and praying for the best.

thank you all for your kind support

We all are in agreement.. however my motherly line to Josh is at this point in all of our lives we have two choices-

1. To let this cancer get us down

2. Or see it as a challenge and beat it


We would all like to have a choice 3-

3. not have it in the first place, huh

Love and prayers to you and yours,

Debbie

PS Our son Joshua's shortcut
http://www.cureasps.org/forum/viewtopic.php?f=4&t=750

[MartinBube]

Hello Debbie

I'm not sure what actually means laparoscopic type surgery and what PT stands for?

the revision as the doctor has said in Vienna should be additional 5mm more on the original site however I will talk with a surgeon tomorrow and see that they propose.

It is a little bit contradictory to me since another surgeon that I went for consultation said 5cm and massive removal of tissue and also even going to the pelvic bone if necessary which for sure will take huge time to recover and not really sure if it would not create any movement issue

[Bonni Hess]

Dear Martin,
I am so grateful that you are so pro-active in seeking additional and expert medical opinions to make the most knowledgeable decisions about your treatment. I am sorry that you are receiving contradictory and confusing opinions and advice regarding the advisability/need for a second surgery to the primary tumor site. Is the advice of the surgeon who is advocating the 5 Cm. margin and massive removal of tissue based on a concern about primary tumor reoccurrence or metastatic spread, or both? I am perplexed about the doctor's discounting the aspect of possible vascuar invasion based on his feeling that "mainly all malignant tumors have vascular invasion". It certainly seems to me that if there is vascular invasion of the tumor it can then be spread through the bloodstream so I think that his opinion needs more clarification and documentation before you discount the aspect of possible vascular invasion as a consideration about whether or not the second surgery is necessary if there is already microscopic spread of the ASPS cells. Of course if surgery is determined to be necessary to prevent primary tumor reoccurrence that is an important consideration but these issues need to be discussed with and clarified to you by the doctors to better guide your treatment decision. I Hope that you will be able to obtain enough clear information to make a decision that you are confident about. In the meantime, please know that my most caring thoughts and very best wishes are with you, and I will be anxiously awaiting your next update about your treatment decision.
With deepest caring, healing wishes, and continued Hope,
Bonni

[MartinBube]

Hi Bonnie

thank you for your continuous support. I'm also perplexed regarding the vascular invasion but that is the answer I got. I said, I'm a mechanical engineer and when I read this for me it is scary and I feel that a surgery bleeding can spread it.

they said: id does not work that way, saying that surgery is not working in that way.

Seeing that I'm not a doctor but I try to look on things in a logical way I'm getting to confused. However the pathologist here in Macedonia did say to me, medicine is not as maths. 2+2 does not equal 4 always.

I got tonight another email from the oncologist from Vienna that radiation is more likely to help on high grade tumor and surgery on low grade. However I need to chose a surgeon wisely which actually is not that easy since we are talking about living people that operate on people and not just a cell phone that has predetermined characteristics

I have scheduled a meeting with my first surgeon tomorrow and I'll see what she says. If she is not confident for sure I'll see additional doctors. Only time is not waiting

[D.ap]

Hi Martin

A thing called work called me in this morn..
Sorry for the late reply.

Laparoscopy--surgery involving a laparoscope

Laparoscope: An instrument through which structures within the abdomen and pelvis can be seen. A small surgical incision (cut) is made in the abdominal wall to permit the laparoscope to enter the abdomen or pelvis. A diversity of tubes can be pushed through the same incision or other small incisions permitting the introduction of probes and other instruments. In this way, a number of surgical procedures can be performed without the need for a large surgical incision. Virtually all parts of the body today can be visualized using a laparoscope including the joints of the body.

Laparoscope comes from two Greek words. The first is lapara, which means "the soft parts of the body between the rib margins and hips," or, more simply, the "flank or loin." The other Greek root is skopein, which means "to see or view or examine." Skopein has become -scope in English

PT is ,physical therapy, to regain usage of any muscle that maybe involved

Laparoscope: An instrument through which structures within the abdomen and pelvis can be seen. A small surgical incision (cut) is made in the abdominal wall to permit the laparoscope to enter the abdomen or pelvis. A diversity of tubes can be pushed through the same incision or other small incisions permitting the introduction of probes and other instruments. In this way, a number of surgical procedures can be performed without the need for a large surgical incision. Virtually all parts of the body today can be visualized using a laparoscope including the joints of the body.

Laparoscope comes from two Greek words. The first is lapara, which means "the soft parts of the body between the rib margins and hips," or, more simply, the "flank or loin." The other Greek root is skopein, which means "to see or view or examine." Skopein has become -scope in English
in the surgical procedure.

Keep the faith and let us know as time permits.
Love
Debbie and family

[D.ap]

Hello Debbie

I'm not sure what actually means laparoscopic type surgery and what PT stands for?

the revision as the doctor has said in Vienna should be additional 5mm more on the original site however I will talk with a surgeon tomorrow and see that they propose.

It is a little bit contradictory to me since another surgeon that I went for consultation said 5cm and massive removal of tissue and also even going to the pelvic bone if necessary which for sure will take huge time to recover and not really sure if it would not create any movement issue

Martin in reference to the clean margins and massive removal, here in the states, before the advent of specialized surgeons orthopedic etc a surgeon would more times than not , amputate a limb rather than perform limb sparing surgery as a response to a sarcoma.
Not that long ago either. Beginning in the 1970's. surgeons began rethinking sarcomas and the margins needed to control cancer.

[MartinBube]

Hi Debbie

as far as I know it was not done with Laparoscopy. However it was not done with too much scalpel cutting.
I had very small bleeding. did not had any drain, was able to go home 2 days after and able to walk one day after. However until I got to normal walking with no pain 2 weeks passed. I started running one month and a week after.

maybe the reason for not bleeding to much was because the tumor on one side was in the fat tissue and on the other touching the muscle, it was not deep in the muscle towards the back.

I saw my surgeon today shortly and agreed that tomorrow afternoon she will call radiologist and orthopedic surgeon to agree when to proceed, or whether I should do an MRI of the area before doing anything just to make sure how things are standing.

[MartinBube]

Latest update:

probably I have found a good orthopedic surgeon that does have experience with sarcoma in general and maybe next week or the week after I'll be doing a surgery with bigger resection

however the orthopedic surgeon requires that I do a bone scan before surgery because on the primary site there is a bone from the pelvic area or from the spine that is close and he would like to see if there is anything that is there so that he would go up to the bone to clean the whole area, which sounds little bit scary for me.
after this all material will be sent for analysis to check for any malignant cells in the area, which according to me and the malignancy of this cancer is very likely to appear but anyway lets wait and see

Also I'll be doing an MRI of the primary site before the surgery that I've scheduled for Monday.

really disappointing that after talking with 6 different doctors none said the bone scan and now that comes as possibility also. seems that every one of us needs to be his own doctor

[Olga]

Hi Martin,
so your MRI is on Monday? What if the result is totally normal? Why do you say that "after this all material will be sent for analysis to check for any malignant cells in the area, which according to me and the malignancy of this cancer is very likely to appear"? On the contrary, our impression is that ASPS is not very locally aggressive. Its main danger is a distant spread (and this is the main significance of the vascular invasion note in the pathology reports as its main dissemination route is via blood stream).
Re.Bone scan - we recommend to have it for the initial staging anyways along with the lungs/abdominal CT and the brain MRI.