Overwhelmed for newly diagnosed husband

Margaid,

I agree with your husband that surgeons are more likely to recommend surgery, and brachytherapists are more likely to recommend brachytherapy, etc. However, that is the precise reason why a patient is best served by meeting with each specialist. The purpose of the meeting is not to get his recommendation for treatment, but to learn about his treatment and his track record so that you can make the decision about which one is right for you.

Unlike other cancers where you see an oncologist who oversees a limited list of therapies, there are a wide array of therapeutic options available to the the prostate cancer patient. He typically starts with a urologist who often recommends surgery and then must, on his own initiative, seek out other specialists to talk to (often coming back to where he started, but a lot more capable of making a decision that's right for him.). I met with 6 before making my decision. Gone are the days of the "paternalistic model" of decision-making where one found a doctor one trusted to make the decisions for him (and good riddance, imho). Now doctors are trained in the "shared decision making" model. This puts the onus on the patient to learn all he can about his disease, his options, and to do a frank self-assessment of his own attitudes before making a decision.

I've shown you a number of important studies related to your husband's type of prostate cancer. I suggest that you and he look at them and discuss them with doctors you meet with. At the university hospitals you are considering, doctors usually love to discuss these kinds of studies, and expect that patients will come to them with them nowadays.

At the end of the sticky "for the newly diagnosed" are some suggested questions to ask the various specialists I hope you meet with. I think you will find that you can't know how they will answer them in advance. In some cases, you may not even understand the question, but that's OK too. In explaining it, the doctor and you will get into a conversation that I think you will find enlightening. I think you both will feel empowered to take charge of your own decisions at the end of this process. Feel free to ask questions as you go along.

- Allen

Margaid, the issue, really, with high risk PC is the likelyhood that surgery will not get it all, which means that radiation is in the future anyway. The surgery, especially the surgery that you're talking about, pretty much guarantees nasty side effects, and is not likely to be curative. So, why do it? The so-called triple play of HT+brachy+external beam is a standard therapy for high risk cases, and has a proven track record.

It's easy to get sucked into the emotional "get it out of me" mindset, but with high risk PC, that is potentially very counter-productive.

--note that I'm not a medical professional, I'm just a random guy on the internet who is an affirmed 'surgery guy'--I'm very happy with my treatment and my outcome. But my case is very different from your husband's.

Margaid,

I was diagnosed via a bone chilling biopsy report. Immediately, I saw many good surgeons, urologists, oncologists and a radiation therapist. Everyone pitched their own specialty. All of the doctors, except for 1 of the 3 or 4 surgeons, said I should start hormone therapy immediately. I held off a week because I was able to quickly get into a C-11 scan and immediately afterwards started Lupron and Casodex (Hormone Therapy). Once I started hormone therapy, I had time (several months) to consider my options. That was my path, I don't know if it was right but, it was best for me. The initial gift of hormone therapy was the time I needed to explore and make informed treatment decisions. Best of luck.

Mike

PS: The C-11 scan informed my treatment path. Mayo Clinic and possibly Arizona Molecular ? which has had a name change.

Post Edited (Mike2420) : 6/28/2016 9:30:10 PM (GMT-6)

I think Mike2420 is making a good point about starting hormone therapy now. Since he was advised to (1) start it before surgery and (2) he almost certainly will be advised to start it before any kind of radiation he may decide upon, and (3)he would start it even if he decides against surgery or radiation, it seems he has nothing to lose and everything to gain by starting it now. It will take the pressure off so you can take your time and more calmly examine your options. Radiation usually requires that hormone therapy begin 2 months before the radiation in order to give it time to radio-sensitize the cancer. If he agrees, almost any doctor can administer the medicine.

The only caveat is to be sure you complete all diagnostic imaging tests (e.g., bone scan) before starting hormone therapy. You will also certainly want clearance from your other oncologist - I have no idea what interactions there may be with other medications he may be taking. I know it doesn't interfere with Taxotere (they are usually taken together).

- Allen

Absolutely schedule a surgeon consultation as well. I think it's a good idea to hear all points of view. Ash Tewari at Mt Sinai would be my top choice if I lived in the NYC metro area. Because of the high probability of lymph node metastases, he will probably suggest extended pelvic lymph node dissection (ePLND). This means they will make an effort to take out all the pelvic lymph nodes and not just sample a few (PLND). I understand that they are very hard to see, so they sometimes inject a fluorescent dye to help the surgeon find them. Be sure to ask about this. "Just cut it out" is a something many of us have said, and is a very common first reaction.

I usually don't mention proton therapy because (in spite of their marketing) it has not proven to be any better than other forms of radiotherapy in terms of effectiveness or toxicity, it is expensive, and it is often not covered by insurance. But I know that there is a new proton center in NJ that you may want to investigate. For high risk patients, they would do IMRT to the entire area and a proton boost to the prostate (about 40-44 total treatments). Also, being new, I don't know how much experience they have treating high risk patients or whether they do at all.

It's always a good idea to bring questions in writing with you and write down the answers as you hear them. Some people like to record the interview (with the doctor's permission) but my experience has been that they don't bother to listen to the recording later. I always "debrief' with patients immediately afterwards - it's amazing how much one of us can miss that the other hears. And it's easy to miss stuff when you are hearing new terms and concepts.

Good luck with your high level overview. He is very lucky that you are doing all this for him.

- Allen

I think it's a good idea to hold onto the slides if they will release them to you, but I have no idea about storage requirements, if any. Usually, if you tell your doctor that the path report was from Bostwick or Epstein that will be good enough.

Maybe ask who is seeing his patients while Horwitz is away? If your husband gets a hormone shot, that gives an extra few months to get into see him.

You can usually get the external beam part of the therapy done at a convenient local place. The RO doing the brachy part can coordinate that.

- Allen

How frustrating! I really don't know Mark Sobczak - I've only seen his name on a few studies he co-authored with Horwitz. I would not cancel the Tewari appointment. I have a thought - perhaps you can arrange a phone consult with one of the experts. I've met Mitchell Kamrava at UCLA - a super nice guy - he took over from Jeff Demanes when he retired last year. He does a LOT of HDR brachy and can probably answer all your questions about it for now. The other world-renowned specialist in HDR brachy would be Alvaro Martinez at 21st Century Oncology in Detroit. If you call and set up a phone consult, you can just email your husband's diagnostic info in advance. I am coming up blank on other top ROs in the NYC/Philly area. I know that Sean Collins at Georgetown just completed a study of SBRT boost therapy, but you probably don't want to travel that far.

You are correct that in the two RP+HT studies, the hormone therapy was not begun until after the RP. In the one study, they used a "combined blockade" of an antiandrogen (like Casodex) and an LHRH agonist (like Lupron). In the other study, they only used an antiandrogen (flutamide, in that case). I don't think it would interfere with that therapy and it may help it to start it early. Maybe call the doctor who suggested it and ask him.

When hormone therapy is used with radiation, it is begun two months before the radiation (this is called neoadjuvant), and then continued concurrent with the radiation, and then continued long-term after the radiation (this is called adjuvant). How long the adjuvant period should last is controversial. A recent trial proved that 2 years was better than 2 months for the adjuvant period. One study suggested 18 months may be enough, and some ROs like to extend it as long as 3 years. HT may be especially important when the pelvic lymph nodes will be treated, as in your husband's situation. (My RO includes an optional 9 months of HT, and pelvic LN treatment, in his SBRT high-risk protocol).

In your husband's case, he has elevated PSA and high grade cancer so they might suggest he start his hormone therapy with about 2 weeks of Casodex. This prevents a testosterone flare, which would otherwise occur when Lupron (an LHRH agonist) begins. Alternatively, they can start him with Degarelix (Firmagon), which unlike Lupron, is an LHRH antagonist that doesn't cause a testosterone flare.

Any doctor can start him on hormone therapy. And I don't think anyone, surgeon or RO, would object to him starting it ASAP as long as his other doctors don't see a problem. The only caveat is that it will shrink existing tumors, and that can confound the results of imaging studies where they are hunting for them.

- Allen

HT can be administered by ROs,Uros or MOs. GPs can administer it, but they would probably want the scrip written by one of the others because it's outside of their field of expertise. Degarelix often has injection site reactions on the first 2 shots (they start with bigger doses), so it's best to have someone who has given it before. Lupron is an IM bolus injection that lasts for 3,4 or 6 months. Casodex are just pills.

I don't think he needs a PET scan at this point, unless a doctor requests one. The only reason for your DH to have one would be to rule out distant mets. But because his PSA is already pretty high, even a bone scan should pick it up if any were big enough to be detected. The MRI is often used for staging - that is, it will show if there is macroscopic EPE that might preclude surgery. Radiation is conformal to the shape of the target, so it can deal with any EPE.

- Allen

Hello Margaid. What I did was give my pathology to my brother in law, the MD. In turn, he gave it to 3 fellow MD's and 2 pathologists and asked them, "If this were you, what would you choose?"

The reaponses were unanimous....Radiation

So we went to see Dr. Horwitz at FoxChase today (radiation oncologist). We liked him a lot and he was very informative - he spent almost an hour talking to us.
Fox Chase did their own pathology and came out with the same results and after reviewing everything he said my DH is stage T2c.

His recommendation was to do just IMRT with 2 yrs ADT. He said that since only 2 cores where G9 and the rest were G6 and G7, the prostate does not seem to be bulging out and the CT and bone scan are clean that IMRT is sufficient.

To my surprise he did not think HDRT BT boost was necessary - he said he can do it of course if we want to but does not think is needed. He also did not think SBRT was the right option either. I am a little confused about the recommendation and did not think of it while we were there. He said that SBRT is used more for low and intermediate grade not high grade but than isn't the treatment he recommends more for intermediate not high grade?

I am pretty sure that we will go with RT but just want to get the right RT treatment. Don't want to over do it if not necessary but also want to make sure we do enough.

Any thoughts and recommendations would be greatly appreciated.

Michael_T said...
Interesting about not adding the HDR brachy boost. I'm not one of the guys here that can quote studies, but I'm pretty sure that studies do show there is a small, but significant benefit to the HDR brachy boost. I certainly know that my oncologist (Richard Lam at Prostate Oncology Specialists) felt that it was beneficial. It typically cuts 2-3 weeks off of the IMRT schedule, so total time commitment of the treatment is about the same.

I know, that's why I was hoping to get some input from very knowledgeable, supportive and smart people on this forum. Right now we are thinking that we will make a decision by Monday if we will go with surgery or radiation, although we are pretty sure it will be RT. At that time we will start on any and all paperwork for approvals, hormone shots, schedule planning session etc and that will also give us a little more time to decide if we should/want to include HDR.

Since going to Fox Chase is at least 3 hr round trip my DH is considering going on disability since it might be too much for him to do the drive plus the treatment and work,or maybe see if he can work only part time and mostly form home - something else we need to check into.

I'm sure we could get the treatment in NJ, but knowing from experience, having the right doctor and being comfortable with the doctor makes a huge difference. We like Horwitz the best from all the doctors we met for any PC consultation and best from many, many doctors we've met for CLL over the last 10 years (well, maybe we liked one CLL doc just as much or more :) ).

Michael_T said...

BTW, was there any discussion about the radiation having any effect on your husband's CLL?

We talked to couple of CLL doctors about any possible problems with various treatments of PC and I also called the company that sends us the drug. If we decided on surgery he would have to get off his CLL drug for about 10 days before and after surgery but there is not problem with taking hormones or radiation as far as anyone knows. Another reason to go for RT? :)

Allen, I looked at "dose painting" link and I do not think that he is thinking about it. He was very thorough in describing all options and specifics of each and did not mention anything about SIB.

In my notes I have image guided IMRT with calypso markers, 40 treatments 5 X week for 8 weeks. Lupron for 2 years and Casodex for 2 weeks.
We can start on Lupron any time we want but he does not believe that waiting 2-3 months before starting RT makes any difference. We are planning on starting on Lupron ASAP as it will still take at least a month for all the prep and getting everything scheduled including our personal stuff.