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Today's appointment with my brother

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Posted 3/26/2013 12:44 AM (GMT 0)
Had my brother at the clinic today. Saw the prostate cancer care coordinator. He was very helpful and had plenty of information.

We then met with the RO. I've got mixed feelings here. The doc knew his business and had gone over all the details of my brother's case - have even consulted with our URO before the appointment. He agreed that beam radiation wasn't the thing to do and question our objection to surgery - not much but enough for me to get the sense that he's not 100% convinced about Brachy for my brother.

Turns out they don't do Brachy in that clinic and this RO wants my brother to be seen by a Brachy specialist at another clinic so we've got another appointment to go through before making a decision. The question that was this RO was asking was, "would the brachy alone be enough to knock out the PC?" In his mind he was thinking of a combination of Brachy and some beam to get it all. The concern seems to be about last year's rise in PSA. He also concerned that my brother's prostate size is just under the limit of what they like to do for Brachy. In the end he did agree that Brachy was a reasonable possibility and if the Brachy doctor thought he could get all the cancer in one treatment it would be worth it.

Anyway, he was trying to do the best for us, did agree to the referal and now we've another doctor to go see.

I am a bit frustrated that we didn't get something more conclusive today.

Guess it just goes that way sometimes.

Hope you all had a better day,
Andrew
Posted 3/26/2013 12:58 AM (GMT 0)
sorry you didn't get the final solution today, but sounds like you are narrowing things down fast.

hope your brother is holding tough, as you try to work this out for him. does he have any personal feelings about a treatment choice, or is he trusting you alone for this?

david
Posted 3/26/2013 1:17 AM (GMT 0)
Brother is really hoping for Brachy. He doesn't like the idea of surgery and getting to a clinic 5 days a week for beam is just beyond his ability to deal with. I am not 100% sure he really understands what it's all about but really likes the idea of one shot deal.

The one thing he keeps asking is, "Will it buy me 5-10 more years" The docs have told him that Brachy could be a cure so he's willing to risk it. He is clear that beam is out and he'd let me talk him into surgery.

He does have some problems understanding what is going on and relies on me a lot but I try to make a partnership as much as he's able to.

I did feel bad for him on the ride home as he was really hoping to get "the answer" on what to do today. Like so many of us he's overwhelmed with the choices and lack of clarity from the doctors. He'd really like it if one of them said, "This is your only choice, we've got to do X."

I know he's getting depressed over the whole thing. Today was a low point for him but he's a fighter and I hope to rally him for one more try. My brother did hint that it's been a couple of weeks since I bought him a burger and that a good burger with a few fries would really help cure his depression...
Posted 3/26/2013 1:40 AM (GMT 0)
a good burger and fries, perhaps a shake too, has a great way of healing a wounded mind and spirit, makes me want to go to "five guys" burger, and have a heart attack special. hope all this gets resolved soon, for both your sakes.

david
Posted 3/26/2013 2:08 PM (GMT 0)
Andrew,

You may already know about this but I will say anyway. There is a practice in Atlanta that offers a treatment that combines brachy and IMRT. I think they call it "prostacision" or some such moniker. I do not know where you are but Atlanta is fairly east to get to by air and relatively inexpensive. The treatment does take some time but I think they can help with temporary housing.

Do a Google search and you should find a lot of information.

Regards,
Don

Posted 3/26/2013 7:53 PM (GMT 0)
Don - We out here in California and air travel with my brother is not really practical. And we have an insurance issue, medicare, which limits some of our choices and sadly leaves us with local resources.

The news is that we did get call from the Brachy specialists and they have an appointment open tomorrow - my brother thinks the Uro/Ro and care coordinator from the clinic may have pulled a few strings to get us an fast appointment. I do feel like they're trying to do their best but it is a difficult case.

Andrew
Posted 3/26/2013 8:24 PM (GMT 0)
Andrew,
I think you are in the bay area, correct.
If so who is your brother your seeing?

BOOGEE
Posted 3/26/2013 9:51 PM (GMT 0)
Boogee - yes, right here in the south bay. Right now we're working through the Palo Alto Medical Foundation and Standford. I don't know the name of the Brachy doctor we're going to see tomorrow. My brother couldn't pronounce the name well enough for me to understand on the phone. Some doctor out of the Mt. View office - I'll find out for sure tomorrow.

Andrew
Posted 3/27/2013 3:18 AM (GMT 0)
Andrew, as far as having cancer, your brother is still in a good boat, as it sounds like the cancer is still in the capsule of his prostate. Have you looked int o proton therapy ? The number one place is in your backyard in Loma Linda. I don,t think this is about convenience (one shot deal) I think this is more about cure and knowing it,s gone. Nothing wrong with a 2nd opinion either, remember this is also a business. Sounds like the clinic your going to is steering you towards a treatment they can provide, rather than the right treatment.
Posted 3/27/2013 3:31 AM (GMT 0)
Andrew - wishing you and your brother all the best - sometimes the best answer is not the easiest.
You'll get there...
hugs,
Bronson
Posted 3/27/2013 5:10 AM (GMT 0)
Bronson - easy answers is something we never get with my brother. I am just hoping that tomorrow's answer will have been worth the wait.

We'll make it - brother's a fighter.

Andrew
Posted 3/27/2013 5:13 AM (GMT 0)

Webuppp said...
Andrew, as far as having cancer, your brother is still in a good boat, as it sounds like the cancer is still in the capsule of his prostate.

so far that's about the only thing the doctors agree on. Right now no one is really recommending a treatment method. They keep ruling them out. Both the surgeon and IMRT RO have say they'd rather not in this case. Brachy is just the next thing on the list to check out.

Sometimes it's frustrating looking for an answer.
Posted 3/27/2013 6:05 AM (GMT 0)
I am going through the same struggles looking for answers, the right answers too. Hope you find your's soon for your brother as well.

david
Posted 3/27/2013 10:52 PM (GMT 0)
Just got back from today's appointment. The Brachy doctor was a bit concerned that because of the size of prostate and PSA (10.7) that my brother is right on the edge of what he considers the upper end of effectiveness for Brachy. So he was concerned that we still might need some HT at some point. The doc did think that it was still possible for Brachy to curative at this point but wanted to be very cautious about promising results. He was a tiny bit concerned that we might miss something on the edges and there is nothing certain about the PC being contained at the moment (so far he's the only one concerned about escapees).

In the end the doc is willing to try and my brother is a fighter so they're going to schedule the procedure and we need to see one more RO to confirm that they can deliver enough radiation in the right places.

I am not sure if this is normal for Brachy but there are two doctors working on this - a URO and an RO and we've have to have consults with both before the procedure.

They're hoping they can schedule the procedure in 3-4 weeks.

Now, I am going to stop thinking about all this and sneak off to the shop.
Andrew
Posted 3/27/2013 11:42 PM (GMT 0)
I am not sure if this is normal for Brachy but there are two doctors working on this - a URO and an RO and we've have to have consults with both before the procedure.

That was the case with my procedure as well. I believe it is standard procedure...at least it is where I was treated.
Posted 3/28/2013 12:13 AM (GMT 0)
Andrew: its a smart doctor that doesn't make promises, that would be a good sign to me. my oncologist today said joking, if he had all the answers and knew all the outcomes, he would be at the horse tracks placing bets.

david
Posted 3/28/2013 1:54 PM (GMT 0)
Andrew:

Would Obamacare kicking in Jan 1 of 2014 change your options?

I'm having my insurance guy look into this now. From what I can see so far it's very possible that I will be able to dump my restrictive HMO come Jan 1 and go with any insurance wherever I live.

They have to insure you at the same basic rate they insure everyone else at your age range. So having prostate cancer already diagnosed does nothing to the rates.

Not sure if that changes anything with Medicare, though.
Posted 3/28/2013 6:17 PM (GMT 0)
Aachen,
Not really. In any case we can't wait until then to be treated. My brother is already on Medicare/Medical. His coverage isn't really affected by the law.

Andrew
Posted 3/28/2013 6:23 PM (GMT 0)
Andrew, sounds like you have a good plan in place and are doing all of the due diligence. My best to you and your brother.

I agree that now it is time to sneak off to the shop and spend a little energy getting away from Pca as best you can.

Sonny
Posted 3/28/2013 7:56 PM (GMT 0)
Andrew please check into HDR brachytherapy. It can treat larger prostates than seed brachytherapy and makes the radiation dose cloud more conformal to the cancer in shape and intensity than seeds. It also solves the salvage radiation potential of a failed surgery. Some docs do two or three procedures in two days requiring an overnight in the hospital. Some docs like mine do two procedures a week apart and doesn't require an overnight. Very minimal side effects and effective treatment.

Check www.cetmc.com for Jeffrey Demanes at UCLA, the HDR pioneer. In the bay area there is a doc with the last name of Hsu that is renowned. Try googling Hsu and High Dose Rate brachytherapy. If I have the name right you will know. If not I will research it for you. Just let me know.

Another thought for monotherapy brachytherapy is to do some light HT like a combo of 6 months Casodex and Avodart with the monotherapy HDR. Would help the HDR and present minimal side effects. I think Demanes cuts off the monotherapy at PSA 10. Would he extend it to an 11.4? I think it depends on the age and other factors, but you should inquire.

The seed clinic in Atlanta is one I know well and I looked at them for treatment. My wife used the center for breast cancer radiation and they are top drawer. But it would require a very long stay and daily IMRT, which your brother appears to be against.

Please let me know how I might help,

Jack
Posted 3/28/2013 10:17 PM (GMT 0)
Sonny - I managed to get a couple of hours in last night in the shop and am hoping to get a good chunk of Saturday out there.

Jack - We're still waiting for the Brachy RO appointment but so far the consensuses among the doctors is Brachy followed up with HT as a secondary treatment if needed (we've not discussed timing yet). My brother's PSA is at 10.7 so there has been a question if we should attempt any kind of radiation.
Posted 3/28/2013 11:23 PM (GMT 0)
Andrew, you see my signature. 10.7 PSA should not be an issue for radiation. It does play into whether monotherapy should be pursued, but it is much more than just PSA.

If there is a thought at all about HT, many docs, mine particularly, were clear that HT starts before radiation. It does two important things, first it will shrink the size of the prostate (will benefiot your brother's enlargement) to be a better target for the radiation; and, second, it makes the cancer cells more vulnerable to radiation increasing the effectiveness.

Do check into the HDR. Most seed rad-onc don't have the equipment to do HDR, so you have to find a rad-onc that does HDR. They exist in your area and your uro should know some.
Posted 3/29/2013 4:29 AM (GMT 0)
Andrew,
What were the previous psa readings?
Posted 3/29/2013 5:01 AM (GMT 0)

Squirm said...
Andrew,
What were the previous psa readings?


2/12: 7.6
8/12: 6.8
1/13: 10.7

The question right now is about prostate size - it is small enough to completely radiate or do we come up with a different plan.
Posted 3/29/2013 1:15 PM (GMT 0)
Andrew,

The doctor is I. Chou Hsu, MD. He is in the radiation oncology department at UCSF Medical Center. UCSF is renowned as a leader in prostate cancer treatment. Dr. Hsu specializes in HDR Brachytherapy and regularly publishes treatment methods and results. I just read the abstract of results treating men with PSA >10, Gleason 7 or greater, and T3 staging using HDR brachytherapy with very encouraging results.

On the website www.ucsfhealth.org you can find his information by searching the doctors. It looks like he practices at the Mt Zion clinic, 415-353-9807,and the Parnasus Clinic, 415-353-8335. If I were you, I would get a consult before making any decisions.

Jack
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