Martin from Macedonia - Dx Jan 2015

[MartinBube]

Hello everybody,

First of all I want to tell you that one and a half week ago, I had my first baby girl. I'm so happy and thankful that I got to experience this in my life.

I had a regular chest CT 30th of July which came out identical as previously. Nothing new same number of nodules that I had January 2016 which still terrify me when I get the result.

I have Brain MRI for Thursday as ones per year, and Abdomen and Pelvic MRI 30th of August.

will write right away as I get any result

[D.ap]

Martin

Congratulations on all announcements ! : )
How’s mom and baby doing ?

[MartinBube]

They are doing great. Sleeping, Eating & crying.

Till now we are excellent

[Olga]

I am happy to hear that your doing good and enjoying the parenting experience, also want to note that your scanning schedule/discipline is excellent.

[MartinBube]

Thank you Olga,

I also did today abdomen MRI and last Thursday Brain MRI.

Brain MRI is all clear.

I'm still having difficulty with finding a date for pelvic MRI as here in the state system is little bit chaotic but hopefully I will do it in September

[Andres de Mexico]

Acabo de leer todos los comentarios y me da tanta alegría que todo este marchando por un buen camino, muchas felicidades.
también me da esperanza de que yo este libre de esta enfermedad.

[MartinBube]

Hello Everyone

Its been a long since I have read or written on the forum but believe me I was soo busy with work and Family that it kept me no thinking of nothing else.

So in September i did a CT chest and end of October MRI of Abdomen and Pelvic. All the scans are clear with no changes.

As I had 2 nodules since my first scan in the lungs 2 and 3mm which still the doctor claims are not connected with this (I think this can not be 100% sure at all) I asked them to compare the size from the first scan in 2015 Feb and Sep 2019. So all was the same.

From my surgery / diagnosis this January would be 5 years now, but still I continue to go on the scans always with a great dose of fear. I'm not sure if this will ever stop.
I do the scans every 6 months now.

I really hope that my stable situation will keep on.

[D.ap]

Hello Martin ,

Such great news to my ears!
So incredibly glad for you!
Thank you for checking in and sharing .

Love to you and yours ,

[MartinBube]

Hello everyone

Update from me after some time:

almost 6 years (in 3 months) since surgery and diagnosis

- Had a CT Chest Sep 2019 and MRI Oct 2019 which was all good, same as before

Due to covid I was not able to do the next check sooner so its been a year since I scheduled again.

- Had a CT Chest last week. Unfortunately this time there was some new Radiologist that looked at my result and had a report that says significant growth of my 2 lung nodules. from 2mm/3mm to 5mm/6mm. I felt really disturbed and tried to find and talk with them but no success.

Went back home and took back all old results and noticed that one time they wrote 2mm/3mm but also the first scan says 5mm.

So I took the old CD and went in 2 private hospitals for second opinion. The radiologist there looked at both CDs and they saw the nodule but they were not able to see any difference in size. They even measured on a scan from 2018 March 4.8mm and in the official report is written 3mm.

So 2 additional radiologist have confirmed that there is on visible/significant growth. Additionally they have explained that the nodules very hardly can be defined as secondary mets, but some other type of inflammatory nodule that is not connected with ASPS. I'm really not sure if someone can say this but anyhow I explained to them that I consider my case as special and rare so asked them to take a look carefully.

Again both said in this scan they do not see anything that I should be worried, but to continue regular scans to follow up as I'm doing the last 6 years.

My oncologist has asked me to move the schedule to once per year.

Next is MRI, Abdomen and Pelvic probably next month.

I will update as soon as I finish that.

[Olga]

Hi Martin,
it is indeed a worrisome development. Were the CT scans done with the contrast, all of them at the same hospital/scanner - there is variability. As I understand, the previous CT was done 1 year ago, correct? I am not sure re. all the speculations re. nodules being not ASPS connected - if they are slowly growing, it is more possible they are ASPS than not. I would say it the mets are growing, it is highly probable they are ASPS because it would be hard to find another cancer or sarcoma that in some patients grows so slowly as ASPS.
Please do no panic. If these are mets, you have a case of the very slow growing ASPS and with the single digits they can be most probably treated with the local ablations - preferably cryo but other modalities can be used too with the high level of experience using it being a major factor.

[MartinBube]

Hello Olga

thank you for your reply

All the scans are done on the same CT scanner but without contrast, as I have very bad reaction from the contrast. Probably next time I will do with contrast.

we compared Sep2020 with March 2018. In March 2018 the report says 3mm but yesterday the Radiologist on that same CD from March 2018 measured 4.8mm instead of the 3mm written on the report.

And on the very first Report from Feb 2015 the radiologist wrote 5mm.

This was very strange to me as I have chronologically in the reports

Feb 2015 5mm
March 2018 3mm but actually is 4.8mm
Sep 2020 5mm
I even have reports between these that say no nodules :)

therefore I suspect that the measuring was not done very precisely.

Anyhow I will not do anything at this moment. I will not wait for one year but will do sometime in April 2021 another CT chest with Contrast so I can at least compare with the very first which was done with Contrast.

afterwards I can search for options to remove these nodules if necessary or maybe I will not do anything, depending on the results

[Olga]

There might be some other contrast medium options, if you had a bad reaction to the contrast in 2015. Discuss this with the radiologists. What was the reaction you had? sometimes fluids IV help to wash it out faster from the body.
Re.sizes - look stable to me, if comparing trough the years. How many nodules do they see, what is the step resolution of the scanning - slice?

[MartinBube]

Hello Olga

when I had the CT done with contrast I usually have difficulty breathing and the urge of having stomach reaction as throwing up. This lasts 10 seconds and that's it. but the feeling is like I will stop breathing.

there are 2 nodules which are the same as the first scan but as I wrote, through the years there are reports where they say all clear. and reports that say 2 nodules with same size 2 and 3 mm.

that is why on Monday I asked the radiologist to open the Scan from March 2018 to find them and measure. He measured 5mm and on the report is written 3mm. Either they do the report so fast and do not care just click fast to measure or there is some other parameter.

Anyhow next week I will meet my radiologist that was looking my result since 2015 and will compare all CT done till now carefully so that we are sure if there is any need of worry at the moment.

I'm not aware what is the step resolution of the scanning - slice and it it can vary between scans

thanks

[Olga]

Thank you for clarification. Let us know how the review goes, comparing the scans from as far as possible is a great way to see the real evolution of the nodules. In any case, you are doing great so do not overreact.

[D.ap]

Martin
I second Olga’s above message .
I wouldn’t worry too much about the readings .
Have a good remaining weekend !

Love ,