Hello,
This is my first time posting here so Id like to start with a brief introduction of myself since I will be participating on this forum. Let me start of by saying my first language is not English as im from the Netherlands.
My main goal is to both gather and share information on this journey and hoping to find some friends on the road. So feel free to ask me a question if you are reading this and have just been diagnosed, whenever I have time available I will answer questions.
End of februari 2019 I went to my regular doctor because of noticing a hard marble like structure which seemed to be sticking out of my left testicle. My doctor assured that considering my age (36) that a tumor is unlikely and said that it is nothing to worry about, he had a look at it and told me it was a spermatocele.
Being the somewhat stubborn patient that I am and taking into consideration that I had the feeling of pressurizing and pulsation flow through my pelvic area towards my scrotum I asked if I could get an ultrasound, which he then agreed on.
So early april 2019 I went for an ultrasound with in the back of my mind, well the doctor is most likely right so I did not have any anxiety at all going to the clinic where the ultrasound was done.
However during the ultrasound it quickly turned out that my instinct that that something didnt feel right (especially the pulsating feeling from my lower abdomen towards my scrotum and balls, radiating downwards to my inner thighs) turned out to be true.
3 days forward (8th of april) and lots of talks at aneasthology and fertility department of the hospital they finally removed the tumor, which later turned out to be a stage 1a seminoma with no risk factors. Tumor was 1.2cm in diameter, sphere shaped and there was no ingrowth in the tunica.
There for I was given no chemo and a CT scan done after the operation showed signs of metasasis. The only thing they found were 2 hemangiomas on my liver, which is none cancerous.
The same day they sent me home I arrived a call from the hospital that I should get to the hospital A.S.A.P. because they had found a post surgery internal bleeding.
So I went back to the hospital, they kept me overnight and the day after my hemaglobin started going up (indicating no active bleeding) and I was once again fired from the hospital.
Around 2 weeks after I started to have feelings of nausea every morning and noticed that I was getting swollen glands in my neck, persistent cough and somewhat shortness of breath (post anesthesia symptoms?) were also present but subsided within around a month.
According the doctor and the oncologist this could possibly due to an ear infection and I have to say I have always been prone somewhat to that. But after the earpain and pressure around the back of my skull subsided I was still left with the enlarged lymphs, which once again according to the doctor were not large enough to worry about.
Now my earpain due to going outside (windy weather seems to trigger it) more or less has been very mild. However the lymphs stay enlarged and the pressure on the back of my skull is persistent and is present almost daily and for long periods on days that it is there.
2 years ago I have done a 23andme test (the doctors here in the Netherlands do not seem to take it seriously unfortunetely), but it showed 4 genes that were considered a risk factor for testicular cancer including a somewhat uncommon gene. Also I have 2 genes (including 1 rare variant) that predispose me to glioma (brain cancer), hence my 'worrying' about the doctor/hospital due to financial reasons trying to send me away and trying to make me believe my swollen glands on the back of my head, back of my neck and front of my neck are due to an infection. However they have been persistently larger than normal for more than 5 months now. So I keep pushing my doctor to get it looked into.
Something else I keep noticing is that depending on how full my stomach is and time of the day I seem to get the same odd pulsating effect / low intensity pain around my belly button and slightly above, radiating downwards on the right side of my abdomen towards my scrotum and this often seems to give a feeling of radiating blood flow down my right innerthigh (once again I apoligize for the weird description but there is no other way to describe the 'pain', which I would rate as intensity 1 to 3 on a scale of 10.
The abdominal regions involved are: epigastric, umbilical, right lumbar, right iliac and right inguinal area and once every now and then the left iliac and left inguinal area.
The right inguinal area is slightly (but noticeably) 'bumped', so my doctor had me checked for another testicular ultrasound (due to persistent feeling of heavyness in my right ball too) and to get my inguinal area checked to rule out a hernia, this process has been repeated once more through 2nd opinion at a specialised cancer clinic which also showed no abnormalities in the right testes and also saw no signs of a hernia in the area.
Some other problem I seem to inconsistently getting (though on average least once daily), is a pressured feeling on my hand palms radiating to my ring and middle finger, the same type of radiating feeling i also seem to be getting below my calv radiating down to my ankle and the top of my feet, this seems to be happening nearly only on the left side of my body, both for my foot and hand. This also happens rarely in my left shoulderjoint but rarely
A few weeks ago I had a photo of my chest done, which was clear and saw no abnormalities, which Im very glad about but dont get me wrong my main symptoms seem to be my abdominal area, which upon both self palpation and doctor palpation noticed that the lymphs in my abdominal cavity/wall can be felt, this is also the case for both my inner thighs.
So upon talking with the doctor and looking at the medical history of my mother (crohn disease pretty much all her life), I agreed on getting a gastroscopy and colonoscopy, which found gastritis in the stomach. I am currently still waiting for lab results if this is due to a H. Pylori infection or not. Knowing that and having looked upon the symptoms of antral gastritis (which was the diagnosis) the symptoms listed in both scientific articles aswell as what my doctor told me we both agreed that it was not the reason for my symptoms. I obviously will get my gastritis treated dont get me wrong.
In particular the area directly above my belly button and just right of my belly button give a feeling as if there if a slight open wound just under the skin where the lymphs are, the 'pain' which is only felt upon palpation mainly is very mild (1 on a scale of 10) and is best described as a burning/stinging type of pain as if someone drops a few drops of alcohol on an open wound. This pain is directly where the lymph nodes seem to be somewhat harder and enlarged. To clarify the lymph nodes can be felt all over my right flank of my abdomen and they are definetely enlarged compared to 'my old self' of roughly 2 years ago.
The hospital has planned a CT scan for my abdomen for the 25th of november and they seem rather careless with both me and my doctor addressing the urgency of my symptoms which are clearly not normal.
If someone who has been diagnosed with testicular seminoma/germa/teratoma spread to the abdomen could shed some light on their symptoms and their diagnosis I would be ever thankful.
Oh and one last thing for those worrying if orchiectomy will affect your sex life and hormonal values, I can only speak for myself but my libido and hormonal values recovered after around 2.5month, this is also when the pale look (anemia?) on my face disappeared.
Below are my bloodtest results:
6 april ( 2 days before orchiectomy left side):
AFP <7
HCG beta unit 3 iu/L
LDH (IFCC) 206 iu/L
15 may:
LDH (IFCC) 180 iu/L
23 august:
AFP <7
HCG beta unit <1 iu/L
LDH (IFCC) 190 iu/L
