“Ausalt, ma ei uskunud seda. Ma lootsin, et vähirakke on alles jäänud vähe, aga ma ei julgenud loota, et sa saad täieliku ravivastuse, et vähk on kadunud,” ütles mu onkoloog ja selgitas ka selle mõtte tagamaad. Ta ei julgenud kõige positiivsemat stsenaariumit uskuda, sest lihtsalt mu vähk on selleks liiga agressiivne.

Me rõõmustasime, kallistasime ja panime paika järelravi plaani. Esmaspäeval oli esimene uue ringi kokteilipidu. Viimane kokteilipidu, nagu kindlustusest teada sain, on märgitud 7. augustile. Aga sellest kindlustusest jne räägin kohe. Selgitan ka kohe ära, et saan jätkuvalt ravi selleks, et haigus kohe või üldse tagasi ei tuleks. See järelravi on raviprotokolli osa, mille vajalikkus on teadusuuringutega tõestatud.

Esimesel kokteilipeol laabus kõik sujuvalt. Ainus häda oli mu port, mis ei tahtnud pärast kahte kuud pausi korralikult tööle hakata. Kolmandal katsel hakkas port ilusti tööle ja minu keha täitus immunoteraapia kokteiliga, millel meie jaoks hinnaks 500 eurot tükk. See on isegi odav, sest tänu kindlustusele peame ise maksma ravimist vaid 10 protsenti. Saan seda nüüd iga kolme nädala tagant poole aasta jooksul.

Miks ma otsustasin hinna välja tuua? Sest, mõtlesin, et mis oleks, kui ikka hakkaks seda raamatut kirjutama ja tooks seal ära ka igasugust teaduslikku juttu ja ka ravimite maksumust. Mul on jubedalt vedanud, et peanpraegu vaid 500 eurot ise iga kord välja käima. Mind aitab kindlustus.

Või noh, sain eile kindlustuselt mõnusa kõne. Mu jooksva kindlustusaasta, mis algas oktoobris, jooksul ei jagu kogu raviks ja kaheks eesootavaks operatsiooniks raha. Ma pean omast taskust maksma umbes 77 000 eurot. Mul on umbes aprillini aega, et see raha kokku ajada. Lisaks tuleb nüüd detsembris ka välja käia mõned tuhanded selleks, et maksta kinni kiiritusravi. Kogu see asi tõmbas mul eile jalad nii alt, et oleksin väga tahtnud oma psühholoogiga rääkida, aga teda näen uuesti alles jaanuaris.

Olen juba end kurssi viinud näiteks Vähiravifondi reeglitega. Sealt ma abi ei saa. Arusaadav, mu ravi toimub välismaal ja seega ei käi ma nende reeglite alla. Ja sellest polegi midagi. Ehk siis, mu enda ülesanne on see raha kokku ajada. Kust, seda ma veel ei tea. Täna ma ei tea veel ka seda, kust ajan kokku järgmiseks nädalaks vajamineva raha, sest pangaarvel on mul oluliselt vähem.

Kiiritusravist räägin ühes järgnevas postituses lähemalt. Praegu on see, mida tean, et saan kiiritust 15 korda 15 punktis ja see skeem on saadaolevatest kõige moodsam.

Tegelikult on mul jubedalt vedanud, et nii head ravi saan. Mind aitab erameditsiin. Jah, ma olen patsient erahaiglas, kus kõik maksab. Aga, arvestades, et hinnaks on lõppkokkuvõttes mu elu, siis tahan loota, et see on väike hind, mida maksta.

Olen siin (oma raamatu tarbeks) natuke sügavamalt uurinud ka Eesti ja Portugali (riikliku ja era)meditsiini erinevusi just selles osas, mis puudutab konkreetselt minu haiguslugu.

Ma sain teada (tegelikult teadsin seda juba varem), et Eestis puudus pikka aega automaatne Haigekassa rahastus immuunraviks pembrolizumabiga kolmiknegatiivse ja põletikulise rinnavähi (TNBC + IBC) puhul lihtsalt diagnoosi põhjal. Selle asemel lisati immuunravi haigekassa rahastatavate teenuste loetellu konkreetsete raviskeemide ja näidustuste alusel. Iga näidustus pidi omakorda läbima hindamis- ja lisamisprotsessi. Ehk siis, kõik võttis kauem aega, peab ootama komisjoni otsust. Aga, kiiresti areneva haiguse puhul on aeg üks olulisemaid faktoreid. Seega, Eestis ravi saades ei pruugiks ma täna olla siin, kus nüüd oma raviteekonnaga olen.

Tean ka faktiliselt, et inimene, kes põdes Eestis sama diagnoosiga vähki, nagu mina, ei saanud sama ravi ja suri mõned kuud tagasi. Jah, loomulikult on iga haigus erinev, iga kulg erinev, aga selle vormi puhul on kiire, karm põhiravi ja pikk järelravi hädavajalik.

Mida tuleb Eesti puhul veel tähele panna: mul on ka põletikuline rinnavähk (IBC) aga, Eestis kasutatakse selle juures sõnastust “kliiniline vorm ja agressiivne kulg”. Rahastusotsused on Eestis aga tavaliselt sõnastatud TNBC staadiumi ja “kõrge riski” järgi, mitte “IBC” sildi järgi.

Portugalis võtab ka riiklikus süsteemis olles kõik rohkem aega. Siin on siiski Pembrolizumabil skeemides olemas ja heaks kiidetud. Erameditsiinis, mis on siin väga levinud riikliku kõrval, on see samuti olemas ja minule parima võimalusena maailmas standardina KEYNOTE-522 tüüpi skeem ( keemiaravi + Pembrolizumab enne operatsiooni ja Pembrolizumab jätkuna pärast) tunnustatud.

Ma ei taha siinkohal üldse öelda, et Eesti arstid oleksid kuidagi kehvemad, absoluutselt mitte. Lihtsalt nemad takerduvad kahjuks rohkem Haigekassa/Tervisekassa taha, kes teeb otsuseid.

Muide, minu kirurg ütles, et immunoteraapiat kasutatakse kolmiknegatiivse rinnavähi ravis juba viimased viis aastat. Miks see sai Eestis normaalseks osaks skeemist alles 2024. aasta detsembrist, seda ma ei tea. Mainin igaks juhuks ära, et toetun siinkohal ametlikele Tervisekassa dokumentidele.

Ma alustasin selle postituse kirjutamist oma sünnipäeva õhtul. Teadlikult, sest, miks mitte. Mõtlesin, et ma olen vist tõesti õnnelik inimene. Päriselt õnnelik, sest olen enda ümber suutnud leida nii imelised inimesed. Ja seda mitte ainult sõprade näol, vaid ka tuttavate, isegi võõraste. Ma olen seda mõtet mõelnud tegelikult oma vähiteekonna jooksum korduvalt.

Ma olen isegi küsinud endalt, et millega olen sellise asja ära teeninud, et minu ümber on nii head inimesed. Mida olen suutnud sellist teha, et olen teid justkui millegagi puudutanud?

ENG

“Honestly, I didn’t believe it. I hoped there would only be a small number of cancer cells left, but I didn’t dare to hope for a complete response that the cancer would be gone,” my oncologist said, and also explained the reasoning behind that thought. She didn’t dare believe in the most positive scenario because my cancer is simply too aggressive for that.

We celebrated, hugged, and set up a follow-up treatment plan. On Monday, the first cocktail party of the new round took place. According to the insurance information I received, the last cocktail party is scheduled for August 7. But I’ll talk about insurance and all that shortly. I’ll also explain right away that I am continuing treatment to prevent the disease from coming back—either immediately or at all. This follow-up treatment is part of the treatment protocol, and its necessity has been proven by scientific research.

The first cocktail party went smoothly. The only problem was my port, which didn’t want to start working properly after a two-month break. On the third attempt, the port finally worked beautifully, and my body was filled with an immunotherapy cocktail that costs €500 per dose for us. That’s actually cheap, because thanks to insurance we only have to pay 10% of the medication cost ourselves. I’ll now be receiving this every three weeks for half a year.

Why did I decide to mention the price? Because I thought what if I actually do start writing that book and include all kinds of scientific explanations as well as the costs of medications. I’ve been incredibly lucky that right now I only have to pay €500 out of pocket each time. Insurance is helping me.

Well, yesterday I received a rather sobering call from the insurance company. During my current insurance year, which started in October, there isn’t enough coverage to pay for all my treatment and the two upcoming surgeries. I will have to pay about €77,000 out of pocket. I have until around April to come up with that money. On top of that, this December I’ll also need to pay several thousand euros to cover radiation therapy. All of this knocked the wind out of me yesterday so badly that I really wanted to talk to my psychologist—but I won’t see her again until January.

I’ve already familiarized myself with, for example, the rules of the Estonian Cancer Foundation. I won’t be able to get help from there. That’s understandable because my treatment is taking place abroad, so I don’t fall under their rules. And that’s okay. So it’s my own responsibility to come up with the money. Where from, I don’t yet know. Today, I also don’t yet know where I’ll get the money needed for next week, because there is significantly less in my bank account.

I’ll talk more about radiation therapy in a separate post. For now, what I know is that I’ll receive radiation 15 times, to 15 target points, and that this scheme is the most modern one currently available.

In truth, I’ve been incredibly lucky to receive such good treatment. I’m being helped by private medicine. Yes, I’m a patient at a private hospital where everything costs money. But considering that the final price is my life, I want to believe that this is a small price to pay.

For my book, I’ve also looked a bit more deeply into the differences between the Estonian and Portuguese healthcare systems (both public and private), specifically as they relate to my own medical case.

I learned (though I actually already knew this) that for a long time in Estonia there was no automatic Health Insurance Fund coverage for immunotherapy with pembrolizumab for triple-negative and inflammatory breast cancer (TNBC + IBC) based on diagnosis alone. Instead, immunotherapy was added to the list of reimbursed services based on specific treatment regimens and indications. Each indication had to go through its own evaluation and approval process.

In other words, everything took longer – you had to wait for committee decisions. But with a rapidly progressing disease, time is one of the most important factors. So if I had been treated in Estonia, I might not be here today, at this point in my treatment journey.

I also know as a fact that a person in Estonia who had the same diagnosis as me did not receive the same treatment and passed away a few months ago. Yes, of course every disease is different and every course is different, but with this form of cancer, fast and aggressive primary treatment followed by long-term follow-up treatment is essential.

Another important point about Estonia: I also have inflammatory breast cancer (IBC), but in Estonia this is described as a “clinical form with an aggressive course.” Funding decisions, however, are usually formulated based on TNBC stage and “high risk,” rather than the “IBC” label itself.

In Portugal, even within the public system, everything also takes more time. However, pembrolizumab is included and approved in treatment regimens here. In private medicine, which is very common alongside the public system, it is also available, and the globally recognized standard KEYNOTE-522-type regimen (chemotherapy + pembrolizumab before surgery, and pembrolizumab continued after) is acknowledged as the best option for me.

I don’t want to say at all that Estonian doctors are somehow worse, absolutely not. Unfortunately, they are more constrained by the Health Insurance Fund/Tervisekassa, which is the body that makes the decisions.

By the way, my surgeon told me that immunotherapy has been used in the treatment of triple-negative breast cancer for the past five years. Why it only became a normal part of treatment protocols in Estonia from December 2024, I don’t know. I’ll just note for clarity that I’m relying here on official Health Insurance Fund documents.

I started writing this post on the evening of my birthday, quite deliberately, because why not. I thought that maybe I really am a lucky person. Truly lucky, because I’ve managed to surround myself with such wonderful people. And not only friends, but also acquaintances, even strangers. I’ve actually thought about this many times throughout my cancer journey.

I’ve even asked myself what I’ve done to deserve this. That there are such good people around me. What have I managed to do that I’ve somehow touched you all in this way?