Announcement

Announcement Module
Collapse
No announcement yet.

Finished 3xBEP - my story (and experience with treatment in Slovakia, Europe)

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Finished 3xBEP - my story (and experience with treatment in Slovakia, Europe)

    Greetings,

    finished my 3xBEP last month and just received the results from the last blood test and CT - all clear for now. The observation begins.
    However as most of you (as this is English speaking forum) are probably from UK/US/Australia, I would like to share my experience of how TC is treated in Slovakia. Not much difference in case of medications (BEP is BEP everywhere) but there were few things different from what I was expecting reading your experience on the forum.

    But lets start from the beginning:
    Feb/March 2019 (don't really remember) I started feeling something weird in my left testicle. Was not really pain per se but something just wasn't right. I first went to see an urologist on 22nd of March, he did an USG immediately (was quite surprised he had it in his office) and told me that I definitely have varicocele which could explain the discomfort. However he said he does not see anything suspicions in the testicle itself but he will send my blood for some tests (which was HCG and AFP as I later found out) and for me to come back next week.

    Next week the results came back the markers were elevated (sry don't have the reports not with me so I don't know the numbers exactly). I will never forget what the urologist told me - "Go to (name of the local) hospital and have the testicle removed IMMEDIATELY". He almost shouted the "immediately" at me. So I went, confused, depressed, I remember writing one email to work that I might need to have a surgery and that I'm cancelling all me meetings for a few weeks (haha!). When I arrived to the local hospital I was still so confused about what was going to happen, what was immediately, etc. I decided to do what every man does when he has a problem - I called my mom She is a nurse and long time ago she worked at one of the oncology hospitals over here, so whe would know what do to. It must have been bit of a shock when I told her what was going on but she kept calm, told me to email her the results and that she will have a word with (other) urologist she works with. She did, he had a look at the results and told me to come see him in the university hospital the next day.

    So I did. They (he and some other doc) did another USG and they told to each other, not me "This is definitely a tumor, this has to go out, go find a slot in the operating theater". I was lying there on the bed, no pants, doctors talking about tumors, well, not great. Later the urologist explained everything to me but I was already in so much shock.

    I read in most of your stories that orchiectomy is performed as a same-day surgery. Well that was not the case for me - they told me to arrive on Sunday, I had the surgery on Monday and was released home on Wednesday. Is this inefficient? Probably. But frankly, I could not imagine going home much earlier as I was in quite a lot of pain and could barely move. Surprisingly as the wound healed, walking became okay but I was not able to stand still for weeks after the surgery. Btw. I later found out that there is a rule (or KPI maybe) that after diagnosis, orchiectomy has to be performed within one week. Even my admittance to the hospital was labeled not as "scheduled" but as "urgent".

    After the histology came back the cancer was confirmed - EmbryoCa. I was told to go see yet another urologist - an onco-urology professor who worked at the same oncology hospital my mom used to work years ago. CT scan and some blood tests followed with good results - I was staged at 1A and I was recommended 1xBEP, which I agreed with.

    I read in most of your stories that you had the chemo done as outpatients. It works a bit different over here. The long week (days 1-5) are done in hospital as an inpatient (you actually get admitted at day 0 and next day the chemo starts), days 8 and 15 as outpatients. I was pretty pissed about this at first but later realized it had a lot of pros. Despite the hospital being stuck in like 18th century (3 to 4 bed rooms, shared bathroom at the end of coridor, etc.) it was still more comfortable than daily commute, and I'm from the same town. The doctors in the ward were nicer and had more time than the doctors treating outpatients plus the biggest advantage - it was easier to pee every few minutes during the chemo - a bottle next to the bed rules My record was going every 11 minutes - I can not imagine that as outpatient and asking the nurse to disconnect me every single time.

    However the beginning of the treatment brought a shock. During the few weeks time between the blood test at the onco-urologist and the blood test on day of my admittance to hospital the markers increased. That means I was no longer stage 1A but 1S - which, in case of nonseminoma automatically means 3xBEP instead of 1xBEP. This was probably the all-time worst information I received during the whole treatment, I even felt worse than when I first found out I had cancer.

    Anyways, you all went through the chemo so no need to go through details of every cycle, just a few things I remember:
    - I actually never felt nauseated from chemo. When I felt really bad stomach-wise, it was caused by antibiotics I was prescribed during 2nd cycle (doxycycline) because I had some nasal bacteria infection I cought from my daughter combined with a bite from a tick which tested positive for some bacteria.
    - I felt like **** though at the end of every long week. I always needed at least 3-4 days to get better so I could take case of my self (like cook something, clean the dishes, ...). However I was surprised how quickly the energy returned, literally everyday was better than the one before, at the end of each cycle I felt strong like before the treatment (which was pretty depressing, finally feeling okay and then having to go to next round of chemo.)
    - My taste changed a lot - I could eat bread with bread combined with bread all day long for almost the entire treatment. I felt sick of clean water and never drank much sodas - I settled for water with freshly squeezed lemons. My lemon consumption was like 4-5 lemons a day.
    - The scariest side effect was probably the tinitus (started during cycle 1 and stayed with me until the end of treatment but went away) and a bit of neuropathy (pain in the fingers - which only started after 3rd cycle but luckily went away after about two weeks).
    - Despite balding even before the treatment and making fun of me finally getting properly bald, I remember that it actually made me cry when my hair started falling out on day 16 of cycle 1 - it was like the first encounter with the fact the chemo is actually killing healthy cells in my body.
    - The biggest achievement (except for surviving it) was that I learned how to give myself shots of Fraxiparine, not something I was prepared to do. And boy I'm glad I did it, during the last cycle I met a fellow patient also with TC, who decided not to give himself shots of FXP and he eventually got thrombosis from PICC. Not nice stuff.

    Also one thing worth mentioning is, that despite our healthcare system is actually far from good, we all (all fellow patients with TC I met) received Neulasta / Longquest shots without any issues and without having to pay anything for it - I haven't heard from anyone that they had low white cells or similar. And also while the hospitals don't look very nice over here (or are rather terrible to be honest) I never felt like I was not receiving the most-up-to date medication, cure, etc. comparing the information I was getting from the doctors and what I read on the net (here and elsewhere).

    So that's all so far, wish me luck in observation and sorry for the long post

  • #2
    Thank you for sharing your experience and I am glad you are healing!

    Comment

    Working...
    X