I just got the bad news....40 years old

MrBaseball-

I remembered that recently a HW member, TimOZ, went with Irving Kaplan at Beth Israel Deaconess. I think he talked to several of the top doctors in the Boston area. You might want to email him (email in the link below) and ask how his experience was:

www.healingwell.com/community/profile.aspx?f=35&m=3818836&p=251012

All urologists bring up the can't do surgery after radiotherapy. The argument is not valid. If the cancer is restricted to the prostate, the newer forms of radiation rarely has local reoccurrence. In the rare cases it does, the gland can be radiated again. With the right physician, SBRT, LDR brachytherapy or HDR brachytherapy are very effective and very well tolerated. We have many men who have had these procedures with very high response rates that have been very well tolerated.

The area covered by radiation is also greater in case a few cancer cells have penetrated the capsule. As radiation doses and methods have evolved, the need for surgery, in my opinion, has diminished to a few clinical indications where surgery would not be in the patient's best interest.
Be your own advocate and do not let your physicians ego get in your way. It is your life.

Paul

Thank you for all of the help. I keep hearing to a person in here that "I have time and to do my research" but really how much time do I have? When I asked my urologist about sending my slides to JH he said that it wouldn't really matter because I have cancer and even if there are some adjustments to them, surgery would be his recommendation. So while I know this is my body and my decision, I guess I feel like If I ask him for more things, he will come up with a reason not to. This could be me misreading him as well, but he just seems very interested in the surgery. Even when I asked him how bad this was, his response was "this is bad." That line alone created a sense of urgency for me to just say ok, let's do this surgery and get if over with. Of course as I've seen on here, that is not the right way to go about this, but how do I get around his apparent stubbornness. Thank you for all of the help.

Hi mrbaseball. Like others have said, you are definitely not alone in this journey. I was diagnosed at 39 after my primary care doc decided to check my PSA during a routine physical for fear I probably wouldn't have been back for 4-5 years. She probably would have been right if it weren't for my PSA being a 6.5. That was in July of 13'. Had no idea what that was at the time. I too had young kids (6 & 9) and a great marriage. Still have both just a little older now. Unfortunately the only advice I can give you is to talk to your wife and close family/friends and think about what is most important to you in life and make your decision based on that alone. Unfortunately you will not get much help from doctors in how you should try to treat the disease. At our age of diagnosis, willing to bet every doc you talk to will suggest prostectomy. Every one I talked to did. Of the options I had, active surveillance was the only other option that I was entertaining but I could not get one doctor to say they thought that was a good idea. Too much life expectancy for me they would say BUT ultimately its your decision which never made me feel like I really had a choice. I chose robotic surgery and it is not without side effects almost 4 years later but they are manageable. I can live with them and without cancer on my mind 24/7. PSA still undetectable and cancer free today. I used to say when I was where you are right now, that I can't wait until this crisis in my life was a distant memory. 4 years later it barely enters my mind but there are reminders from time to time. Best of luck in your journey and hope all turns out the best for you.

I was referred to a urologist thru the system my general practitioner is part of. After being told that I was young and likely had an aggressive cancer, he sent me home with an antibiotic. I had a million questions and when I called back a couple days later, he was less than thrilled and was actually short with me on the phone. I thanked him for making my decision to go else where easy and immediately called Hopkins urology and got an appointment. Best thing I ever did.

If you're not comfortable with your urologist or don't like his manner or his willingness to answer your questions, it's time to get on the horn with one of the big centers in your area to find someone you mesh with better. Don't feel trapped or badly about your decision. Move on. Whoever you are talking to should be willing to provide you information about his expertise and should also be willing to refer you to someone that knows about other treatment alternatives AND should not quibble about having his diagnosis confirmed by someone else, much less the recognized expert on Gleason Scores.

You will likely get, "Surgery is the best option," from urologists. And "Radiation will solve your problem," from oncologists. It's natural, that's their area of expertise.

With a G7 you have some time. I don't think anyone here or a doctor will tell you to wait a year to make a decision, but you don't have to make your decision tomorrow either. Find someone you're comfortable with.

Mrbaseball220 said...
, but how do I get around his apparent stubbornness.

A: By firing him and choosing a doctor with whom you are more comfortable. And, by taking control of your own health by consulting multiple specialists rather than relying on this guy who is trying to rush you into one option.

Jim

P.S. BTW, his comment about not changing his mind no matter what Dr. Epstein says sounds arrogant and ill informed to me. What if you're downgraded to 3 +3 in fewer cores? What if you're upgraded to 4 + 4 in more cores? Knowledge is power and to choose one option in a single minded way seems inappropriate.

Mr Baseball, you're getting exactly the same advise from lots of people, so what is your hesitancy?

You have time, do research, get better educated, and please find a first class urologist. The guy you seem to favor is clearly not giving you good council.

Good luck!

I found that when I finally made my decision on treatment, I no longer experienced ongoing anxiety. I've talked with other men who had a similar experience.

As you said, Mr B, it's highly likely your bone scan will come back clean. I'm thinking, and maybe wrong, that you need to get the bone scan done, because if you don't you'll continue to wonder about the low back pain. And I'm guessing you'll feel better after you hopefully get a clean result.

Also, as others have said, most guys find it a huge relief once treatment decisions have been made.

With that said, anxiety will likely be a part if life for a while at least. I've got it, most of us get it. I've done biofeedback breathing training, and lowmdose zoloft, the two together have collectively helped me.

Dr. Adam Kibel at Brighams did my surgery as well as my brothers. He is top shelf...

Mr Baseball-

Yes, of course anxiety is a natural reaction. Boy, have I ever been there! The first thing I did was get into psychotherapy. Having had two parents suffer grievously and die of cancers, my diagnosis threw me into a loop of ruminative thinking that I could not break out of. My interactions with others were affected, I wasn't sleeping well, and I knew I wasn't making good decisions. Psychotherapy helped with all that. My therapist also taught me how to practice mindfulness. It keeps me focussed on the present moment instead of wondering what I did wrong in the past or what will happen in the future. It's very simple to learn, but it takes daily practice. It took me about 2 months of daily practice to make it a habit of being. Within a couple of months, I could recognize myself again and was ready to make life decisions.

BTW- if you're not sleeping, talk to your doctor. You won't get anywhere with your mind if you don't sleep.

As for the bone scan. I think they often increase anxiety. You know those pains in your back? They may be from some kind of repetitive use injury or arthritic inflammation. You may have had bone injuries years ago that you do not even remember. All of those show up on a bone scan. Bone scans are not specific for cancer. Everyone I know who has had one inappropriately has regretted it - they cause needless worry and even further tests to rule out all those benign causes. NCCN (an association of most of the top cancer hospitals in the US) recently issued the following guideline:

NCCN said...
For symptomatic patients and/or those with a life expectancy of greater than 5 years, a bone scan is appropriate for patients with any of the following:
1) T1 disease with PSA over 20 ng/mL or T2 disease with PSA over 10 ng/mL;
2) Gleason score 8 or higher/Gleason grade group 4-5;
3) T3 to T4 disease; or
4) symptomatic disease.

In this study, they recommend bone scans only when PSA >20 or GS ≥8:

Toward better use of bone scans among men with early-stage prostate cancer

Perhaps your best approach is to ask the top doctors what they think. Some of them may have imaging ideas of their own, and the imaging technology at the Harvard hospitals is excellent.

Mrbaseball220 said...
Thank you everyone for your words of support. I have started to take control of this situation and do what is best for me. I think I had my initial shock and was thinking my Dr. would do what's best for me and i could trust him, but apparently that may not be the case. I have called and started to set up appointments, I let the Uro know to send my slides to JH and as I said, I'm taking control.

One thing I am wondering. I wake up each day with a tremendous amount of anxiety. So much so I can feel it in my chest or stomach and I'm sure it's normal, but any advice on how to get that anxiety to not be present? Any help on that would be greatly appreciated. Thanks again.

It's a good question and I had that too for a few weeks. Its totally normally, its a life altering but not life changing diagnosis.

If you can get your head around what people are saying and that you have TIME, you might try the approach I took.

Get a calendar and set some milestones. With your diagnosis and as others have said I think you have MONTHS to make whatever treatment decision you are most comfortable with. Whatever that means I'm not going to put a number on it, every situation is different but it's probably most important if YOU put a number on it. Is it three months, six months (in my opinion both are probably fine) somewhere in between.

Build your timeline with milestones.

1. By next week i'm going to have collected a list of surgeons and facilities I want to have further contact with.
2. I want to send my pathology to Hopkins (probably one of the best, my understanding is that they DO err on the higher side so keep that in mind. Mine came back though actually a tad LOWER than stanford had graded my 3+3 and 3+4 (lower %) cores

etc..

If you build a plan and work the plan, your mind should be more at ease that you are working to solve the problem and in at least MY case that relieved a lot of the anxiety as I got through the initial shock phase.

Then I just dove into research, research studies, clinical studies, meta analysis from all programs for all types of treatment and I built out the level of modeling and strategy that I (underscore I) needed in order to make the decision that I did as comfortably as I think one can such a decision.

It should at least help take your mind off it a bit (I know, even though you are FOCUSSING on it MORE) and it'll will allow your mind to be less anxious yet more productive.

YMMV.

Post Edited (paulmerc) : 7/22/2017 3:01:43 PM (GMT-6)

Mrbaseball220 said...
I think one of my biggest worries is the Bone Scan. That is scheduled for August 1st and due to the fact that I have ongoing lower back and tailbone pain, I am finding it difficult to not think it has spread.

I would get the bone scan. assuming you can afford whatever the co-insurance amount it.
Its not a lot of radiation relative to a CAT scan (an MRI might be better and as many have said I would find a uro who wants to do a 3T image to look for any mets in the region and pelvis area. they can see lymph, seminal vesicles, pelvis area and lower back even).

If it is negative, well then great and focus just on the cancer and treatments

If it is POSITIVE then I think your treatment options for the prostate cancer might change both in approach and of course time and of course follow up. So, I think it is better to HAVE that information than to NOT have it.