My father is getting a lot worse, all chemos failed, hormone therapy did not work either, genetic testing revealed no mutation and he now has very painful metastasis all over his spine ( no organs). PSA is 1900 and alcalina phosphates are high also. My father has an appointment on Thursday next week at the Gustave Roussy cancer center in Villejuif to see if he could qualify for any trial.
I am wondering if some of you in the forum are also located in France and could share some advice. I am chocked by how long it takes to get appointments and by the lack of empathy of my father’s oncologist who does not like anyone else than my Dad to be present during visits. The oncologist actually said that he was fed-up with family members forcing their way in during consultations. My father is not capable of remembering or really understanding by himself and relies on my Mom’s help. My poor mother (she is 75) felt terrible during the last appointment: the oncologist did not say hello to her, did not look at her once. I went once with my dad and had a similarly unpleasant experience. The oncologist never really speaks directly to my father either. He dictates his decisions to his secretary instead of explaining what will happen next to my dad, in a conversational manner. I am glad that my father is being referred to Villejuif and will see a new Dr but I am worried about how it will go. Based on what I have read on this great forum, I think my father should ask about targeted radiotherapy for his spine metastasis and also about radium 223. Will the new Dr get pissed off if my parents ask him these questions? Is such a vertical structure of the doctor-patient relationship usual in France? I am French too but I have lived in the US since 1990 and I cannot even imagine being treated like this here. I would not want to give my parents the wrong advice and further alienate the doctors. I feel terrible because I cannot help more. My father is crying because of the pain ( he is taking 5mg oxicodone, using a 12 mg fentanyl patch and taking a steroid. Are these doses low? This is so heartbreaking. I just told my father that if he still feels so much pain tomorrow, my mother should take him to the ER.
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Le choix de l'institut Gustave Roussy va aider à trouver une option Quand le chimiothérapie ne fonctionne plus, on peut associer au cabizitaxel, Xtandi ou zytiga
Une autre option sera le Lu177PSMA qui est présent à Nantes, Dijon ou Grenoble ou en Allemagne
Le radium xofigo peut aussi aider en cas de métastases
Nous avons vu le professeur Fizazi qui est très humain et très compétent. Il faut absolument le voir lui-même. Avant, un de ses collaborateurs vous recevra et vous demandera tous les détails. Ensuite le professeur Fizazi écoutera le résumé de ce collaborateur et vous dira ce qu'il faudra faire pour votre papa. J'ai pu accompagner mon mari pour tout expliquer. C'était début octobre 21. J'espère qu'ils n'ont pas changé les règles depuis, à cause du covid19. Bon courage!
Medicine is not just science..its an art too. Doctors like your father's..take out the "humanity" out of Medical care are doing disservice to the profession. A concerned wife not allowed in sessions with Doctor is simply lack of etiquate and compassion. I am glad you are changing this Doctor..to hopefully find a humane one.
Hello. I am in France, also sick in stage 4, and treated at the Médipôle de Savoie and at the anticancer Centre Léon Bérard in Lyon. Your father's relationship with his oncologist does not seem appropriate to me. We know these great teachers and doctors rely on their knowledge and science, but we, sick people, are gambling our lives. We must take into account the fact that metastasized cancer is difficult to cure and death is now a reality and no longer an abstraction. So, above all, we need human relationships, empathy, understanding and also clear explanations. We need doctors who look us in the eyes. Your father has the right to have someone he trusts with him in front of the doctor (maybe not your mother, too close emotionally), someone who can speak up and ask relevant questions and receive answers. The doctor is at your father’s exclusive service during the consultation, his only objective must be to accompany him on this difficult journey. At Gustave Roussy, I hope he will be better served. Technically speaking, Xofigo (Radium 223) is available in France, but not reimbursed and very expensive, between 6 and 10,000 euros per injection and we usually do 6, for a result that seems average, interesting against pain, not against the PSA. The Léon Bérard center in Lyon is carrying out phase 3 studies on LU-177 PSMA617, but the study for post-chemotherapy patients has been closed. However, this option can be discussed for a patient like your father, refractory to chemotherapy because there are exceptional authorizations, pending final marketing authorization. If Gustave Roussy is not aware, contact the Lumen department of the Léon Bérard Institute. Lutetium 177 is a strong isotope. I had two out of six injections planned, but the results were not up to par. However, in your father's case, there might be something that could be done. The treatment is also available in Germany, Austria and other countries, but the cost is very high. I want your father to be treated with more humanity and to keep love for life and for those around him.
Thank you so much for this detailed answer. When you say that xofigo is not reimbursed, you mean by the securité sociale but the mutuelle usually picks it up, no?
Yes I mean "Sécurité sociale" (CPAM). But please, read carefully this link : legifrance.gouv.fr/jorf/id/... Under certain conditions, financial support could be possible.
I am so sorry that you are having these difficulties in France. My father lives in Paris (he is 95) and the care he is getting is amazing. I was visiting and needed a 'firmagon injection and was more than pleased with the process and the cost. This is my only experience with PC in Paris. I hope you can work out the details. Not all providers are the same. I suggest that you take the advise of others who have had better results. It ain't no better in the USA.
I am not in France but I am very sorry for all you have been going through. No patient or family member should be treated like that and that doctor should not be one! I assume your dad is living in France and this is why he is being treated there.
Hopefully, the situation will improve with the new referral. The radiation treatments for pain sounds fairly standard of care but every case is different.
I do hope your dad and your family find a more compassionate oncologist who will understand the family's ordeal and your dad's needs for treatment and pain relief.
May your next steps lead you to greater peace and quality of life for your dad. Good luck.
Thank you dmt1121 for your kind words. I hope indeed that they will do radiation for pain even if there are metastasis all over. I read that sometimes when there are too many they do not. If they could identify which metastasis causes pain, it would be good to zap at least these.
Vous êtes mal tombés avec votre premier médecin. Pour ma part, les expériences ont été bien meilleures et peu à peu une relation de confiance s'est instaurée. Mon épouse participe de temps en temps aux RDV(mais pas toujours). D'une certaine manière, elle aussi valide le choix du médecin.
Je suis suivi à l'APHP et à la clinique Hartmann à Neuilly. (Il faut toujours un deuxième avis). Très bien tous les deux.
Gustave Roussy sera mieux adapté pour votre père car ils ont les derniers traitement et une très grand expertise (Premier centre de cancer en Europe). Même si vous ne rencontrez pas Karim Fizzazi, le suivi des patients est collégial. Ils discutent des cas ensemble et prennent des décisions collégiales.
Si d'aventure, vous n'étiez pas satisfaite de la relation là-bas, faites moi signe et je vous recommanderai à mes oncologues pour un RDV plus rapide.
Hello I too live in France and have experienced similar experiences.
I contacted Le Ligue de Cancer, in our area, the lady spoke English and was amazing, she found me another very well respected oncologist, who also speaks English.
My present oncologist is young, listens, likes questions and has no problem with family members being present. He wasn't adverse to my experimenting with my treatment.
If you would like me to send you his details I will be delighted to help.
Le Ligue de Cancer will also be able to offer support to your Mum. Do they get any help at home or other assistance ?
I'm so sorry to hear of your Dads pain and his suffering, intern you all stuffer with him.
Thank you lettuce231 for your kind wishes and helpful comments. I had not fought of contacting la ligue contre le cancer. I will do it to get my mother some help and will write to you if it does not seem to work out at Gustave Roussy.
I have been pleased with my cancer care that I have sought out around the country. but do find even in the top cancer hospitals in the US the assistants to the doctors who we often see instead of the doctor are not aware of future treatments. They seem to only be aware if what is SOC today. So most of us know more about what's coming down the line than them.
I have advanced prostate cancer because of a unknowable rouge PCP doctor and the greed of the hospital corporation pushing the doctors beyond safe limits to increase profits. Accepting the colateral of patient harm and death as part of the process of making more money.
My PCP at that time "apologize in advance" for the crush on him and how he hated the time that has been taken away from his patients while he used patients appointment times to do data entry into the new computer system.
He gave little to no consideration to my comments or concerns during this time. I never every though I might have cancer but He should have and refered me to a urologist and found it early. He had almost no knowledge of PC. The second greatest cause of death for men behind lung cancer and he knew almost nothing about it or the drugs he had me on while presenting himself as knowledgeable enough to make alternate opinions over experts.
He later told me I knew more about PC than him a month after my diagonsis. When I confronted him.
It appears there may then have been a cover up attempt with the hospital, and their urologist to try to bury it. They may have succeeded had I not taken my care elsewhere.
So the US is no panicia when it come to care, and we are very far behind in some areas.
Change doctors and hospitals as often as necessary until you find one that pays attention, takes action, and refers you to specialists before things get out of hand.
Thanks TJGuy. It appears that there are indeed many issues as well in the US and not enough awareness about prostate cancer. It is incredible that patients know more than their doctors! I have told my father to change many times but he was afraid to do it and I did not want to pressure him…
Merci.... the sob comment was from high school French. Here's my favorite expression when I meet French people and when I depart. It means Goodbye and Health and Happiness to you all: "La plume de ma tante".... somehow they always give me a strange look (???). Wait till you see my Greek.....
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