I went ,as you know ,tho the radiologist last Tuesday, I was waiting for the radiologist team to decide about complete pelvis radiation, since the beginning the radiologist told me they normally do only prostate radiation, but ok he was going to check with the team, till 5 lymph nodes was OK for him ,but not receptive to all pelvis ,conclusion today call me to say they would do only the prostate radiation, surprise, his excuse was that they only radiate til five and he saw 6 on the scan ,the same scan others saw 5 ,for me an unprofessional argument to run from a situation they never wanted ,when I confront him why they didn't do all pelvis radiation said it had no benefit for me ,it was to dangerous because of side effects, and finally said I could choose for second opinion in other hospital, Antoni van leeuwenhoek in Amsterdam.
Hi Murcao, I'm sorry that the consultation did not achieve what you wanted and hope the second opinion delivers a more acceptable opinion for you. Did the first consultant detail the potential 'dangerous side effects' and the chances of you experiencing them?
I think others have spoken of haing 'all pelvis radiation' in this forum?
They don't do all pelvic radiotherapy there and then use stupid excuses, instead of simply admitting the fact they don't do it ,radiotherapy to all pelvic region is very common, including boosts to positive lymph nodes.
I’m so sorry that you are having this battle but well done you for challenging what seems like an inequality in the delivery of health care. I don’t know where ‘there’ is but have you heard of the patient advocacy service ‘POhWer’. Could they or a similar service help you? They have a website
good luck and I really hope this works out in your best interests.
If I were you I would go for second opinion at a centre of excellence to investigate the possibility of whole pelvic radiation.
Very sorry for the bad initial respons anyway. I must say that it’s very strange strategy to go ’all in’ with both hormone therapy and Abiraterone and then only do radiation to prostate because of the amount of lymph nodes. Anyway, second opinion seems to be a very good strategy right now. And also, if you will have a second opinion, perhaps you could check for the possibility of having done your radiation treatment in another EU country that do whole pelvic radiation treatment together with prostate radiation
It's very difficult for me to check that possibility, I have an health insurance, it's the normal hier in the netherlands, everything related to cancer treatment It's covered by the insurance but I don't know if it's possible abroad ,everything costs thousands and I'm not rich, Belgium and Germany are close enough but have no idea if it's possible. Maybe I need an authorisation from the insurance and you know they only see numbers ,stop working for a couple of months and travel expenses or even staying some weeks in other country I can afford it ,but medical expenses most be covered by the insurance.
my husband has been told exactly the same . I tried to challenge but the oncologist said it will do more harm than good . What harm? My OH starts RT in a weeks time once a week for 6 weeks and apparently it’s a strong blast . His PSA has fallen to 0.1 with the Prostap, Aberaterone & Prednisone. We thought about a second opinion but we have waited far too long and we will challenge the oncologist at the next meeting .
The radiologist told me the same ,he said they only radiate 5 lymph nodes max and he says is at least 6 so he doesn't want to do ,I beg to him ,but they give a fuck ,sorry the language, it may have second effects, I don't see hoe it would benefit you ,it's my life ,what side effects worst than death ?
Totally get it swear words and all .my OH were away for a good few days and when we next meet the oncologist questions will be asked whether he like it or not as up to now I felt like a child being put on a naughty step . Will keep you updated on our discussion
