Check up fear

[melanie]

Hi all, its been a long time since I have been on this board. My husband was diagnosed with stage 1B 99% Embryonal carcinoma back in February of 2018. He did 1 round of BEP. So far he has been all clear. His next round of blood work and chest x-ray are on Thursday and for some reason both of us have a terrible feeling about this appointment. I recently found out that a third of adjuvant relapses happen after 3 years. I am really freaked out by the possibility of late relapse and look for some hope and support.

[Mike]

Relapses after adjuvant BEP do seem to be pushed back a bit into later years, compared to most happening within 2 years on active surveillance. However, the relapses after adjuvant BEP are more rare and while check up time is always an anxious one, I would not be overly worried. I do understand the worry though.

Mike

[melanie]

Thanks Mike. I really dont understand why my husband and I are so worried about this check up. Its weird. Maybe because we are getting close to the 5 year mark? I know after 5 years you are considered cured but that has always confused me as one can relaspe after 5 years. So what does "Cured" really mean? Do you have any data on the relaspe rate after 5 years?

[Mike]

I think we all get a little nervous thinking that we are close to the end of observation, etc. I am not sure that there is a perfect definition of cured. I kind of look at it at when my chances of it coming back are back to that of a typical person in the population of getting it in the first place.

There is always a possibility of cancer in the other testicle even so we never have any guarantees.

Mature data from SWENOTECA showed about a 3% chance of relapse after adjuvant BEP https://pubmed.ncbi.nlm.nih.gov/25114021/ and then the G3 Group showed in those that relapsed 20% did so after 5 years https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7164488/ These are small numbers though so hard to tell.

I would assume at this point that the BEP did it's job and that you are only going in to get checked to prove to other people that what you assume is correct. Kind of an I told you so. haha

Mike

[melanie]

Hi Mike. So I am confused on a finding. My husband's chest xray was clear of cancer but they suspect COPD. His last chest xray was in 2020 and did not note this finding. He has no symptoms of COPD or any breathing problems. He passed his lung function test back when he finished chemo. He did a sleep study last year and his oxygen saturation great and never dipped. He has never smoked is very fit and has no trouble breathing with exercising. Could this finding be a mistake made by the radiologist? Could it be lung damage from his 1XBEP? I didnt think 1 round would put him at pulmonary risk or that it would show up more than 2 years after treatment.

[Mike]

Hi Melanie,

Sorry for the delay. It is a bit outside my wheelhouse. I think Bleomycin toxicity would be rare with just one round. Did he have COVID by chance? If so, wondering if that could be causing an issue? Have they referred him to a pulmonologist for further evaluation?

Mike

[melanie]

Hi there, Nope, no covid. He has been in great health. The oncologist reviewed the xray and said that he thinks the radiologist is wrong and that my husband just took a large breath and that he has large lung capacity. He did not refer him to a pulmonologist but I do wish he would have as I feel like we should rule out any disease. It feels very strange to me that a radiologist would assume disease so easily. I would imagine they should know what a large breath looks like on xray.

[Davepet]

I will simply say that mistakes happen, whether in the test itself or the interpretation. I would not be cconcerned unless nother test returns similar results.

[Mike]

It feels very strange to me that a radiologist would assume disease so easily. I would imagine they should know what a large breath looks like on xray.

Unfortunately, in the U.S. the radiologist is pretty hands off and just looks at the images, for oversimplification and not a slight to radiology. When I lectured for Philips Healthcare on low dose CT technology in Australia and Poland the radiologists were a bit taken back as they are more hands on as far as assessing the appropriateness of the tests ordered, patient history, etc.

My urologist would order my CT scans with and without contrast (basically 2 CTs in one) and then the hospital had a delayed kidney scan, which was like another smaller window CT. In reality, I only needed one CT with contrast (or without if the radiologist preferred) but by the time the radiologist was involved in reading the scans the Rad Tech had just done exactly what was ordered. My urologist was ordering them with and without contrast so that whatever was needed could be done (i.e. giving the radiologist the option without having to contact the urologist). It wasn't until my 5th year and 12th CT that a Rad Tech got the order changed in order to reduce my radiation exposure.

After one CT, I was told I had Crohn's Disease because neither my urologist or the radiologist knew that I was suffering with travelers diarrhea when I did the CT and thus the intestinal inflammation. Another time my urologist told me I was in kidney failure because my creatinine shot up, when in fact I had only eaten one meal that week and it was my muscle breaking down.

The point is that an image or a lab result on their own can mean different things based on the individual patient and sometimes when just looking at the result and not the whole patient, things can get misinterpreted.

Mike

[dcnovachris]

Hi Melanie -

Your fears are a common concern I also had each time I was approaching a check-up appointment. I was diagnosed with Stage IIA embryonal cell carcinoma and blood markers were never elevated. Since my cancer spread to the lymph nodes in my abdomen, I was ALWAYS worried that a few rogue cells got away and were going to make their way to my chest or brain. My pulse and blood pressure were always elevated at check-up appointments, even at my final 5-year appointment. I tried to calm myself with reminders that I had done everything in my power to facilitate a full recovery (orchiectomy, RPLND, check ups, etc). Beyond that, it was in the hands of a higher power and I could only control how I responded to the news, good or bad.

To ease your concerns leading up to the appointment, it may help to prepare a list of questions for the oncologist. Perhaps I was lucky with my post-surgery oncologist, but he always patiently answered all of my questions and addressed any of my concerns before ending our appointment. He also reviewed my chest x-rays and CT scans personally and would follow up with the radiologist if he or I had any concerns with the radiology report.