An Update From Us

[MelaniePaul]

Hi everyone.

So my husband came back from the hospital just now where they did the bone scan today. Tomorrow they are doing a second scan - I am not sure what the English word for it is, only know it in German. But with those two scans plus the latest PSA readings Paul's oncologist will hopefully be able to get an as clear as possible picture of what is going on at the moment and what treatment to choose.

We have looked into Chemotherapy and Xtandi and feel positive towards both; I suppose it depends on how agressive the tumors are growing which way to choose.

This morning, I contacted the hospital in Germany again - well, one of them - where the offer LU177. My question was mainly what we could do to reduce the cost of the treatmet. The whole thing would cost about 20,000 Euros. It was then that I was told that there is a form wich is called S2, I think, which can be used in Europe by patients who can't get a treatment in their homecountry because it is either not available or the waiting list would be too long. So then they get the treatments they require in the other European country and the cost is somehow split between the two countries. Don't understand it completely, yet, but it definitely looks like we wouldn't have to pay for this on our own.

Still, we are still worried and the waiting for the doctor's appointment is annoying. We would like to know now how to go forward, even if the way forward would be complicated or maybe even frightening in itself.

Best wishes to everyone for today!

Mel.

[Dr_WHO]

Be strong! I can not give advice on the cost of treatment in Germany or the EU, but you have my prayers that your husband can get the treatment he needs. Having cancer is not cheap. I had to fight to get one of my pills covered in the US ($10,000 a month).

The second scan you talked about may be what we call a CT scan. It looks for turmors in the soft tissue and organs. Once that test is done, could you please post your husband's results (PSA, bone and CT scans, biopsy results, Gleason score, etc.). There are a lot of people that are a lot smarter than me here. With your husband's information they may be able to suggest possible treatment options. For example I have Stage 4D1, T3N1, Gleason 4+4, Ductal prostate cancer which had spread to the pelvic area. With that kind of detail the brains in our group should be able to give you solid advice.

Please do your own research and do not be afraid to challenge your medical team. For example, 18 months ago I had to fight to get surgery as they said it was to advanced. Recent studies have shown that is the way to go.

Please also use this sight if you or your husband needs emotional support. When I was first diagnosed with advanced cancer I was feeling down. A great man, Eric, on this sight helped me get back on my feet. Perhaps that is the most important thing about this sight.

[Hidden]

I wish you well. I've always had the nuclear bone scan and CT abdominal scans on the same day.

Ich wünsche Ihnen alles Gute. Ich hatte schon immer den nuklearen Knochenscan und CT-Bauch-Scans am selben Tag.

Feel free to use the German term as many on this group speak German.

Fühlen Sie sich frei, den deutschen Begriff so viele auf dieser Gruppe zu benutzen. Deutsch spechen

I am curious as to if you are German or an ex-pat living in Germany.

Ich bin neugierig, wenn Sie Deutsch oder ein Expat leben in Deutschland sind.

Gourd Dancer

[ctarleton]

These links concerning procedures for obtaining planned medical care in other EEA countries might be helpful in some way. They all refer to the S2 process.

nhs.uk/NHSEngland/Healthcar...

nhs.uk/NHSEngland/Healthcar...

focusondisability.org.uk/me...

Charles

[MelaniePaul]

Hi Charles.

Thanks. We have received the form this morning and will fill it in to see if we qualify for this.

Unfortunately, as I have mentioned in another post this morning, my husband's situation is getting worse at the moment, so we are not sure if we will go to Germany or just do the treatments suggested from the hospital here. Ideally, I think, we would get a couple of rounds of Chemo and then Xtandi afterwards. I don't think we have time now to wait until we get the okay from the HSE, the Irish version of the NHS, to go ahead with treatment in Germany.

Mel and Paul.