recently diagnosed in Boston

tomobrain...

Welcome to our club..and it's not as bad as you fear. Dana Farber has a great reputation. That being said, there are some things we'd like to share with you....

First, at the top of the forum page there is a topic post called "newly diagnosed--read this first". I'd suggest you read it. There is lots of good info in there.

Here's the deal: your diagnosis is what we call low-intermediate risk. Which means that you have time to make a truly informed decision. PC is not like other cancers. You have time...up to months...to do your research, look into all the treatment options..and then make a good decision about what is right for you.

Some things to do:

Ask your urologist to send your slides down to Johns Hopkins for a second opinion. The crew there reads nothing but PC slides, they are the experts. It may not change your diagnosis...but it might.

Then, when you go over to DF, set up appointments with not just a urological surgeon, but with the radiation oncology team as well. Ask them to lay out all your options...and what they all involve, and what the potential side effect profiles look like.

In reality, you'll be fine. You are cureable--yes, cureable. Not remission, but cure is in your vocabulary.
Come back, ask questions, feel free to lay it all on the table. We've all been where you are.

Sorry for your diagnosis and you have time to learn and decide. Rushing is a mistake. I was heading into surgery decision with the most experienced surgeon in America but wanted to check off that I looked at other options. After one meeting with my ro changed my mind. I just had my six week follow up today and I am as normal if not better than presurgery.

I am not telling you not to do surgery. Only choose your treatment after you fully know all the implications of each treatment.

Thank you everyone for your responses - Andrew my PSA was 3.4 but had gone up from 2.6 in 6 months. Does anyone have thoughts on how quick it could get out of the Prostate. Great to have this community. My urologist said RT not for me as I had a lot of cancerous samples in biopsy. Should I get some kind of MRI before surgery?

Talk to my guy, Irving Kaplan at Beth Israel he's one of the top radiation guys in town and can give you all the options from that vantage point. It's best to get the point of view from each specialist since they're up to date on best practices and capabilities. Then you can make a decision based on the best understanding.

Also discount anytime one specialist bad mouths another specialty. They might not be as up to date and see it through their own lens which they have a lot of ego invested in. The old saw, to a carpenter every problem takes a hammer holds here too.

Beth Israel /DF /Harvard is all some sort of collaboration so most of these docs are associated across all three.

Tomobrain,
What Saipan said. You have the time to make an informed decision. A urologist is trained in surgery and thats the way they lean. Because you are low/intermediate risk, you have plenty of time to do your research. You must be your own advocate on this journey. Make appointments with surgeons as well as radiation docs. Both treatments have side effects associated with them. You need to decide what is right for your life style and what you will be comfortable with. Follow the advice you’ve gotten above. One other thing to include as you learn about this disease and its treatments. Always bring someone with you to your appointments to take notes and ask questions. You’ll be amazed at how much you’ll forget to ask and won’t remember if you’re alone. An extra set of ears always helps.
First.........relax. Take a deep breath and realize, as mentioned above, cureable is in your vocabulary. I am also a GS9 like Michael T. It also took me about 3 momths to decide on my treatment plan.
Best of luck. We were where you are now. We’ll be here for any questions you may have

Post Edited (Dogdays) : 3/21/2018 10:55:12 PM (GMT-6)

thanks everyone, you have opened me back up to the possibility of radiation. Also should I get an MRI prior to surgery - any thoughts?
I will also check in and get my biopsy slides checked out by Johns Hopkins - I will ask my urologist. Saipan - DRE was negative and my PSA went 2.6 then 2.8 then 3.4 with 3 then 4 month interval

tomobrain said...
...should I get an MRI prior to surgery - any thoughts?

Yeah, one thought: It's too soon to be thinking about that. You haven't decided to have surgery yet, remember?

tomobrain said...
Saipan - DRE was negative and my PSA went 2.6 then 2.8 then 3.4 with 3 then 4 month interval

Negative DRE is a hopeful indication that your PCa is confined to the capsule.
Per MSK's nomogram, /www.mskcc.org/nomograms/prostate/psa_doubling_time, your doubling time is about 18 months. That rate shouldn't move the needle toward rushing your treatment decision.

I agree with others that you should explore the various radiation options before settling on surgery. Even if in the end you decide on surgery you will then know you chose it after fully exploring the many options that are open to you right now, their potential effectiveness, and their potential side effects. It's an important decision, you have plenty of time to explore options, and whatever you decide you won't get a do-over if you later wish you had chosen a different course of treatment.

Dana Farber is a premier go-to hospital for advanced or high risk cases, in part because DF participates in a lot of clinical trials and also because doctors there get a lot of experience treating patients who have failed previous treatments. I'm there now myself. But clinical trials usually don't apply to patients who have moderate or intermediate risk disease which should respond well to standard treatments--whether surgery or any of the various radiation options. These treatments are available at Dana Farber but are also available and done successfully at Boston's many other hospitals, nearly all of which are affiliated with Harvard, Boston University, or Tufts medical schools. I'd be more concerned with finding the right doctor for your chosen treatment rather than a particular hospital. You want someone with a lot of experience doing the procedure you'll be having.

Best of luck researching the many options open to you and making the difficult decisions need to choose a treatment and to find the right doctor and hospital.
Jim

Let me add my voice to the "slow it down" chorus. You have plenty of time. Even if you take a year to decide, it probably wouldn't make any difference.

Here's all the info I have on why one should not worry about taking one's time:

/pcnrv.blogspot.com/2016/08/treatment-delay-in-primary-radiation.html

I agree with SteelGuy that Irving Kaplan at Beth Israel would be an excellent choice for an RO.

corrected - not fav. int. risk - but still slow!

Pratoman-

Yes, you are correct. that would take him out of the favorable intermediate risk category. I'll correct that on my previous post. Thanks.

tomobrain,

I don't know how I can add much of a technical nature here. You have received advice from some of our resident Experts - capitalization is intentional. These men know the landscape, and have given excellent advice. They did the same for me, and I am ever grateful.

Where I may be able to add something is in underscoring the need for newly diagnosed men to fully realize that unless they have drawn a VERY bad hand in their diagnosis, there is ample time to learn, understand your condition and understand its potential treatments. Even as unfavorable intermediate risk, your disease is curable. There are numerous surgical and radiological treatments that can do that job, and the best of them have similar cure rates. No one treatment is greatly better than others.

That said, if the cure rates are similar, my advice is to learn which treatments are appropriate and available, then learn about their side effects. You are a young man, so you will have the privilege of living with those side effects for many years. Choose wisely. You don't want to pick a treatment and then find out that its side effects put a major damper on your lifestyle.

Also, as the others have said, when you want to learn about a particular treatment, its efficacy and its side effects, be sure to learn from a practitioner who actually delivers that treatment. This is true even down to sub-specialties. For example, an RO who is an expert at LDRBT (implanted seeds) is most certainly NOT an expert at SBRT (a form of high-dose external beam radiation), and the expert in SBRT is definitely not an expert in brachytherapy. It takes a bit of research up front, but it is worth the time to learn, discern and choose. Only after you have done all this can you comfortably choose which treatment is best for YOU.

Welcome to the discussion Tomobrain.

The bad news is your recent diagnosis. The good news is two fold: 1) you have plenty of time to research, learn as much as you can and ask as many questions as you can and 2) you're in Boston, so you have access to layer upon layer of state of the art knowledge and treatment.

I'm also in Boston, and went the surgery route for a lot of different reasons. Consider the Lahey Institute of Urology in Burlington. They have two of the best and most experienced surgeons in Boston - Dr. Moinzadeh and Dr. Canes. Lahey also has all the current radiation treatments, and based on my experience, very good RO's - Dr. Howard Hsu is mine.

I found it really important to have docs I could talk to, and who would listen - that is very true of DR. Canes - which is a surprise for a surgeon at the top of his game. I have friends who have been patients of Dr. Moinzadeh and have very high opinions of him. As others said, you want a team working with you - even then the amount of "do it yourself" decision making is staggering.

Best of luck, and check in here to let us know how you're doing.

Rob