New Member "sue saddened wife" : PSA rising (3005) after two tx xofigio. What's next?

Sounds good Beth. For the record, I expand my disappointment with the Canadian system to include just about every stage of care we've encountered, not just primary care. By contrast, I have experienced far superior service from the neurologists and prostate oncologists I have contacted in the US. I look forward to our chat!

Hi Sue,
Posted a poll and thread. Yes, I have noticed that we are able to get approval for some of the newer HT's and chemo that you are not getting. But we also have thousands of dollars in debt, and that with what is considered a decent insurance plan. I'd have to take the expense over lack of treatment, though. It appears that your free health system doesn't like the expensive US drugs!
Beth

Beth, that is so true, and it leaves us with no choice other than to pay full price for a drug to be adminstered in the US if we cannot get it here.

Ah! Good for you Doug. I am encouraging Don to think about a prostatectomy as I know a few guys have had this even though (as the BC Cancer Agency so delicately puts it) "the horse has bolted." He wouldn't have an orchiectomy but seems amenable to the other. I was listening to Dr. Israel Barken speaking about someone who had bone mets but they were apparently determined to be dead and scarified so he had his prostate removed. Seems to have worked well.

Just to add a tidbit on the "free" medical...yes it's "free"...although you may be dead as a door nail by the time you actually get to be seen. On the east coast, we have to fly to Halifax, Montreal or Toronto if we want to be seen by a specialist within a 2 year period (we live on an island, roughly the size of Texas, so driving to Halifax is still a 16 hour drive PLUS a 12 hour ferry ride)...at our own cost. And of course none of the drugs are covered here...so hubby's Lupron shots are around $3500 out of pocket, and if he wanted to continue with the Cialis daily maintenance it ran around $500/mth---all out of pocket and not covered by MCP (provincial "free" medical plan)

Post Edited (ashleynfld101) : 2/2/2015 3:47:27 PM (GMT-7)

Whoops Doug, I didn't read the RALP part. I am horrified by the thought of radiation too but my husband had frightful pain in his head and that stopped it. Nothing else would. I hate the concept of Xofigo as well as all this stuff is in itself carcinogenic. That's why I follow all the natural substance studies and do as much as I can to help Don protect his healthy cells while sensitizing cancer cells to radiation. And I am beginning to think that doing nothing is as good as having all these evil drugs in your system. At least, in Don's experience.

@Ashley Your post isn't at all funny but the way you put it made me chuckle. Yes indeed, the system sucks. Our Lupron and Firmagon are covered if you are 55 or better. Zytiga and Xtandi are covered, the latter by Astellis if your provincial plan doesn't cover it. We have insurance (extended benefits) with Great West Life and they cover quite a few drugs as well.

Doug,

Given the theme of this thread, I was wondering if you could remind me how you came to get an orchiectomy instead of the more-typical hormone therapy shots. I seem to recall that because of your tender age you would have been out of pocket for the shots but the orchiectomy was covered. I remember thinking at the time that, had I been you, I would have considered that a high price indeed for "free" healthcare.

But, of course, we all have our phobias and you and I seem to have different ones. I had no problem with radiation which seems to be off the table for you but I could never have matched your sang froid about your perfectly sensible surgical solution.

@Moon---lol, it's okay, I try and add a little of my east coast humour to this whole ordeal when at all possible! Only happy if it makes you chuckle! I still have a little of my ha-ha intact;)
Over 55 hey? Well, isn't that interesting. I have definitely not heard of that here...if we wanted to be fully covered, I suppose we could go on welfare...that would certainly cover everything...meanwhile, in all seriousness, we are blessed enough at this point at least, to be able to afford the out of pocket drug costs...

@Doug---yes, I believe that would be covered...hubby not keen on the idea (at this point anyway---although in ALL honesty, it certainly makes NO difference to me!---quite frankly as a girl, I always thought they must really be in the way all the time anyway ;) lol. Just kidding. ---There's that inappropriate humour sneaking in again...;)

Peter, it was a combination of things, cost of drugs the major one. Having been out of the country for last 15 yrs my health insurance lapsed and being in a war zone the premiums were exorbitant, to say the least. So first cost. Secondly, I have absolutely no problem with being "neutered"; that was basically taken care of by the RALP anyway. If you really think about it all they really did was demolish a useless sperm factory. Having the prosthetics installed left me "intact" with something to scratch. I'm no worse off then you in the ED department, can still do the trimix, rings, pumps, implants or whatever.

As for phobias, I'd do spot radiation for pain as long as they stay away from my rectum, bladder, colon, that is where a "phobia" may come in. I don't want a secondary Cancer or,damage to said parts. I'm quite happy with 5 good years rather than 10 lousy ones. QOL!
That's about it in a nutshell (pun intended)!

Cheers, Doug

Ashley I do not know where you live but for the love of heaven make them do the mamogram. Do you have a family history? Our daughter had a momogram last year and she was 41 but it was her fertility specialist who ordered it up .Her regular GP was baliitic telling her she is exposing herself to all that radation. I applaud the fertility Dr ., she did 3 rounds of invitro and was on some pretty strong drugs ..Funny Lupron was 1 of them. Her paternal grandmother died with breast cancer and we have her Dad with stage 4 prostate cancer .We do not know if the Braci 1 or 2 genentics is part of Daves family history. After the fact of Dave getting the diagnosis we did find out that a estranged grandfather died of prostate cancer. But lets not screen .! But Ashley your poor husband , this makes me feel ill. I wish you lived close I just want to hug you like I would my daughter. When I read your post I can't help it I am crying.😢.just cannot believe that for your husband. It is negligence pure and simple. Have you written letters of complaints to the college of physicians and surgeons because I would get copies of his medical records showing dates he had testing and results an I would lodge a complaint! As soon as its filed as a complaint it has to go to a reveiw board. They do tend to stick up for their own however the complaint is like at the very least a mark against their record. I am still waiting and will call this week about our complaint. Today we had ct scan appointment at 1 hospital and bone scan at another. Fri is the tell all day for us when we get results and I am scared were Daves PSA is going to be I hope I am wrong and it stays at 3,005 and doesn't go up. They are sic #s.I am going to be writting a letter very soon to the minister of health because the more I find out about the neglect of healthcare and what it costing us with the lives of our husbands the more enraged I become. I want answers!! But really Ashley demand and do not take no for a answer!!🌼🌼

Thanks ladies:)
I know...it's all beyond frustrating. I did demand the mammo (I mean, do they really think we're just itching to get in the squisher---like it's fun!!). They flat out refused (directly from Radiology dept) they went against my primary Dr. orders and said NO!
I'm heading to Florida this weekend and think I'll simply self refer and get a mammo on my own---I'll send it to my primary back in Newfoundland, and if nothing else, then I'll have a baseline. I'm 35 btw.
I do understand that at my age, breast tissue is dense and therefore mammo's are not as useful, but honestly, why not do it anyway?! Plus, I am the first to say, stick a needle in it--biopsy it! If you don't know what it is---find out!!
Needless to say, with Dave's history and prognosis, I am not anxious for anything to happen to me, and feel like I have no choice but to be my own advocate.

Yes Sue, I'm waaaayyyy over here---St. John's, Nfld....I literally live in the most eastern house in North America. Next neighbor is in Ireland:) And yes, the waits in the hospitals, scans, Dr, dentists---everything is purely sickening. Literally and figuratively! lol.
I have an average of 2 week wait just to get into our regular family doctor. Now what is hell's bells good is that when one of the children has strep throat and needs antibiotics? My 6 year old had a 10 day wait after Christmas to get into the Dr...I knew she had strep--I could see it. Got to the Dr--finally, she took the swab only to tell me that it had to be sent out...so exactly 22 days AFTER I first called the Dr office to get her an appointment, she finally got the darn antibiotics.
Oh, and here's an interesting tidbit---do you know that ALL our biopsies in this province get sent away to be read? Our breast biopsies get sent to MIAMI!!! Yes, you read that right. So results take an average of 3-4 weeks. Dave waited almost 5 weeks for his prostate biopsy results.

We actually spent 4 months in Panama this past summer...yes, the one in Central America....Dave would go to the lovely private clinic (Johns Hopkins affiliate) every few weeks to see the nice English speaking Dr, who was trained in Canada....he would walk in without an appt, have his psa, testosterone, and every other battery of normal tests done. He would pay his $12 (!!!!) and he would have the results emailed to him within 4 hours.
How's that for a 3rd world country. Beats the hell out of our 1st world sorry excuse for healthcare any day.