Martin from Macedonia - Dx Jan 2015

[MartinBube]

Hello

Regarding the comparing scans since the start of my control scans I talked with the radiologist and the result is the same she claims that she does not see any visible growth or change in these 2 nodules. When I asked why the difference in size in some results, she said depends on the magnification they use and which points are measured. For eg. the same nodule from left to right is 3 mm and measured up and down is 4mm. if the mafnification is smaller than the possibility for wrong dimension is even higher So I wait and see the next scan.

In the mean time I did MRI, Abdomen and Pelvic which came out clear and same as before.

However in mid December I went on Cardiologist just for a regular check that I do ones in a year or once every 2 years and the doctor saw a nodule on my thyroid gland 8mmx4mm with no bloodstream but said nothing to worry about just to check my hormones which were all in normal values.

After a month I just went to a specialist to check what this would be and the answer was seems nothing serious but to be sure please do a biopsy with a needle, and this really worried me.
I will go tomorrow for a second opinion but definitely I'm would like to avoid a biopsy or at least without consulting another or third opinion. At least I would wait a month or two just to see if there is any growth or not.

As I'm already ASPS could be a met, but also could be something else. Do you believe that MRI would give better understanding of the situation? If necessary I would make the biopsy so that I know what to do next

[D.ap]

Hi Martin ,
I absolutely feel a MRI would be your best tool right now.

[Ivan]

Hello

Regarding the comparing scans since the start of my control scans I talked with the radiologist and the result is the same she claims that she does not see any visible growth or change in these 2 nodules. When I asked why the difference in size in some results, she said depends on the magnification they use and which points are measured. For eg. the same nodule from left to right is 3 mm and measured up and down is 4mm. if the mafnification is smaller than the possibility for wrong dimension is even higher So I wait and see the next scan.

In the mean time I did MRI, Abdomen and Pelvic which came out clear and same as before.

However in mid December I went on Cardiologist just for a regular check that I do ones in a year or once every 2 years and the doctor saw a nodule on my thyroid gland 8mmx4mm with no bloodstream but said nothing to worry about just to check my hormones which were all in normal values.

After a month I just went to a specialist to check what this would be and the answer was seems nothing serious but to be sure please do a biopsy with a needle, and this really worried me.
I will go tomorrow for a second opinion but definitely I'm would like to avoid a biopsy or at least without consulting another or third opinion. At least I would wait a month or two just to see if there is any growth or not.

As I'm already ASPS could be a met, but also could be something else. Do you believe that MRI would give better understanding of the situation? If necessary I would make the biopsy so that I know what to do next

Don't biopsy. It's so small they will miss it probably. "no bloodstream" - the nodule is non enhancing?

[MartinBube]

Hi Ivan,

Yes non enchancing, and no bloodstream but this is only ultrasound. I will see another doctor tomorrow and will also ask for MRI

[Ivan]

Hi Ivan,

Yes non enchancing, and no bloodstream but this is only ultrasound. I will see another doctor tomorrow and will also ask for MRI

ASPS is very vascular, so.. I'm not sure if the MRI will give any actionable data. If it can give a higher resolution in soft tissue (it very well may), you can get it as a baseline. I don't think you should biopsy or do anything. This is not a common location for ASPS metastases.

Do you have any prior scans of the area for them to go back and review? Perhaps in retrospect they can see something there.

[Olga]

Martin - in support of everything that was said already and to round up the subject - I would suggest to proceed with two consecutive scans few months apart with the contrast preferably done on the same scanner for better comparability. To small to biopsy plus we try to avoid unnecessary biopsies. Do not worry much but stay vigilant.

[MartinBube]

Last Friday I went for a second opinion to see another doctor (Thyroid Gland specialist) which suggested the same. I have explained the whole ASPS situation and he did a detailed ultra sound.

definitely no biopsy at this moment, but check up in 3 to 4 months. He said that MRI is not needed for him also at the moment but I will do it to have some referent value for the future check ups.

[Olga]

Hi Martin, was the planned in 3 to 4 months check up done?

[MartinBube]

Hello Olga,

Yes I did another check in July, everything is the same as in March. The doctor said that at this point we can do this checkups for a while because this nodule could have been here for a long time like that.

I'm going to do the regular CT, MRI scans in the next months so I will check it again also.

[MartinBube]

Hello Everyone,

I had my regular yearly check in November and I got the result today.
Abdomen and Pelvic is all clear and no news.

However on CT chest there were noticed 2 new nodules. The old ones were the same as before. I had this scan on a new CT machine and new radiologist that read the result so I took all scans and went for a second opinion immediately. We compared 2015 and 2021 scans. The discussion was also very confusing to me as this guy which is pretty one of the best in the country was not even able to find the old nodules. He noticed the new one but he said that there is a big difference in the imaging technique between this 2 scans. The one from 2015 said was not very HQ, on the other side the new scan is done with 3mm resections and that he can not say that this was not something sitting there and now on a new and better CT its been detected.
He recommended another scan in 6months on the same CT and same technique.
In the meantime I will try to reach the radiologist that was following my case since the beginning if she is able to look at the results between the years to check again.
To conclude I have not much to do but wait for 6 months now.
To me is also strange how the old nodules are same size but there are 2 new that grew to3-4mm

[D.ap]

Hi Martin ,

I wonder if they were just missed in prior scans.
It amazes me the detail scans of the lungs .
It could be calcified benign deposits very easily.
But it’s good that the oncologist is doing a comparison/ 6 month follow up .😊

[MartinBube]

I found all my scans and took it for another opinion. Now I'm more confused than before. This radiologist that looked at my clear scan 2018 and 2021 says that he does not see any nodules in my lungs at all. That this image he sees makes no sense with my latest report.
I even tried to show him some spots that I think I saw in the past with other doctors.
I explained all about asps and how indolent can it be and he was aware somehow about it. But repeated again that my lungs have no nodules.
For me it is stranger that last 2 places I've been they are not able to see the old nodules that are written in reports.

I have researched a bit and I will try one more place for opinion. Next is to send this scans abroad. Maybe to the hospital where Dr. Rolle used to work. Is the procedure still available that he used to do?

[Olga]

Yes as far as I know it is available...but perhaps you should not rush and just wait for the next scan, and try to keep the scanning on the same scanner with the same resolution.
They are either very, very small and few or none? Besides if there are only few nodules they might be cryoablated if they get to more than 5 mm size, it is not that traumatic. Dr at the Coswig hospital will say the same, wait and see, to have a firm proof they are there AND that they are growing.

[MartinBube]

So another update. I went for another opinion with all the scans. Definitely there are nodules probably 5 because I do not have a detailed new report but this is what this radiologist said to me:

My Scans 2021 and 2020 are completely identical which means I did had the "new nodules" last year but were missed. all is same size.

There is one nodule only that he is not able to see in 2018 but says that the image is with lower quality than the new one. This nodule is almost 9mm. This is what is very worrying to me. The nodule is deep in the lung not on the surface so I'm not sure what would be the options for surgery.
He explained to me that in 3 years this nodule could be anything and that I should not panic and just follow up in 6 months or 1 year as it is already stable for 1 year. I will try go get a brain MRI because I have not done it for few years just to check if everything is OK or not.

I want to start some communication regarding potential surgery so If anyone can share any contact with the hospital at Coswig so if you can please share any contact so I can at least start the communication. I will also check what are the local options but I can not expect to much as my oncologist is not very experienced with ASPS.

Meanwhile I got infected with Covid with some mild symptoms, just my d-dimer are increased and I have 7 days therapy to do another check

[D.ap]

Hi Martin,
With the scan pics, how much did the nodules grow from 2020 till now?
Does your job by chance lend itself to pollutants of any sorts?

I'm wondering if the nodules could be pockets of inhaled particles ?
The radiologist is reputable and knowledgeable about ASPS and it’s imagining looks ?