Newly Diag and comming to grip with it

Welcome to HW, sorry you need to be talking to us.

Kind of a shock to get the news. Let that sink in for a bit. Now's the time to learn all you can. Dr. Walsh's book and the sticky thread at the top of the forum are good places to start.

With your numbers you have a lot of options. Surgery would likely work but so would radiation - beam (IMRT/IGRT) and brachy seeds. What you really need is another medical opinion. At least you need to talk to a radiation oncologist. And I'd think another URO. A good URO should have given you a better set of options - to only offer surgery is a bit narrow minded.

When I was DX'd, my URO sent me over to our local cancer clinic for a "multi discipline" appointment. There I got general information on PC, the clinic and spoke to both a URO (surgeon) and a RO who specialized in IGRT. If I wanted they had a brachy specialist in a nearby city as well.

They gave me plenty of time to make my choice, offered lots of help and listened. One thing I still laugh about is that I'd brought in a written list of questions so I would forget what I wanted to ask. Near the end of the appointment the RO asked if he could see my list because he wanted to make sure we'd covered everything, then he took the pathology report and lit they'd give me and marked out where all my questions were answered so I could refer to it when I got home (and wrote down the title of Dr. Walsh's book, suggesting I get a copy). It was important to them that I made an informed decision. I ended up choosing radiation and it's worked just fine.

You want a doctor and medical team like that.

Hang in there and keep us updated on your progress - ask all the questions you can think of, we're here most days,
Andrew

A little more info: While I doubt there is a natural cure, I am doing several things to see if I can at least slow it down. I was already taking Tumeric as it did a great job of treating some inflammation but I increased the dosage. Your probably know the rest,,,, Vitamin D, Pygeum, Stinging Nettle, Beta Sitosterols (the last three in one pill), lycopene (cooked tomatoes), Pomegranate juice, flower pollen, Vitamin C. As little dairy as possible (no milk), no calcium supplement, LESS red meat. Campbell's book, The China Study, has interesting information on the effect of Casein (protein in milk) on cancer. The information in this book is disputed by many but the stats in that book regarding global cancer cases and tests on rats are hard to argue with.

I am currently taking an antibiotic. I had pain and discomfort in my groin for three weeks after the biopsy (I had NO symptoms for the previous infection). Went back to my doctor and urine analyses showed infection. From the biopsy? Not sure.

You didn't mention who read your biopsy slides.

Probably the most important step for anyone in your shoes at this juncture is for a pathologist who specializes in PC to provide a second opinion (unless your initial reading was already done by one of them). In the sticky thread titled "Newly diagnosed with PC? -- read this thread first," this is the "Step 0" (to be done before Step 1, in other words). Please read that sticky thread (4th post down) for more information on how and why to proceed.

Welcome to the forum. Another great source of information is the book " The Prostate Monologues," written by Jack McCullum. It's a great look from the patient's point of view and a good read.it's available online.

As a fellow G7 guy, you have time to invest in learning all you can about which primary treatment is best for you, sounds like you are off to a good start.

Many urologists happen to be surgeons, so their bias to push surgery is the expected, but it doesn't mean its the best treatment for any particular patient in question.

Check out all options, talk to a good medical oncologist (many tend to be neutral about treatment options) because they typically don't have a "dog" in the fight.

It's important to make that primary treatment decision the best possible one, as you don't get a second choice to re-do it.

Keep learning, keep reading, keep asking questions.

Good luck to you ahead, and we are here to help you and support you along the way.

David

Hello Daig7 and welcome. Sorry you have to be here but you DO have both time and options to make a good decision. As others have said, the sticky thread for newly diagnosed patients is a good place to start. Here is the link: www.healingwell.com/community/default.aspx?f=35&m=2652250

The next best thing you can do is to get another opinion on your biopsy. Bostwick and Epstein (JHU) are experts. This is as much art as science and you want to get the best opinion.

In addition to the books already recommended, I have found "Invasion of the Prostate Snatchers" by noted prostate oncologist Mark Sholtz is a great read. It will give you some counter balance to the surgeons eager to start cutting on you.

Beyond that and beyond just visiting another urologist, you should consult with doctors who are experienced in LDR brachy, HDR brachy and SBRT. All of these have shown curative results as good as surgery but with generally less onerous side effects.

Do your homework, get educated, review the options and then...make a decision.

Best of luck,

Jim

Hi Daig7 and also let me extend my welcome. The time after diagnosis is a crazy, crazy time. I would echo the previous advice to take your time learning and being informed about making a decision. My experience is you have to be own your own advocate and to try and control the health care system instead of letting it control you. At the end of the day, only you know what is best for you.

Also, with your diagnosis your prospects are excellence. Since that's the case, your decision is likely more about the potential side effects (which vary from person to person) more than anything else.

Best of luck and do let us know if you need any help.

Michael

Hello daig7,

Welcome to the forum, sorry you have to be here.

My stats were similar to yours, 3+7 but I also had an enlarged prostate and my uro (who was also my surgeon) said that because of my enlarged prostate, the seeds were not a good option. I had open prostatectomy within a few weeks of my diagnosis, and my PSA levels are still undetectable.

A year and a half later I still have significant ED, started to see some progress in the last couple of months, went from needing around 60Mcg of alprostadil to needing 5-6 Mcg to get an erection that is strong enough and that lasts long enough to allow some spontaneity in intimacy.

In hindsight, and based on information I have now that I didn't earlier, if I had to do it over I would have asked about treatment to shrink my prostate enough to make the seeds a viable option, because it seems that might have resulted in less ED problems.

I applaud your taking time now and second guessing your uro/surgeon's advice. I'm praying for a good outcome for you.

Good for you, Daig,
I had a urologist who was similar to yours. He did not remain my urologist for long. Unfortunately, many are frightened into that 'must get it out out' mindset. You can learn about prostate cancer from many sources. Walsh's book(s) were not my favorite as the slant towards surgery is obvious. My favorite book on the subject was Surviving Prostate Cancer Without Surgery by Brad Hennenfent.
Best wishes on your journey, and congratulations on your courage. There is indeed quality life after pc.

daig7,  Welcome.  It stinks you have to be here, but you've found a great place.  There is a lot of info at the top of this page "please read if newly diagnosed". I was a little like you in thinking "what do I know compared to doctors", but I did my research and came away being able to ask good questions to start with (for example, "how many of these surgeries have you done, and what were the results?").  I had a urologist who wanted to do robotic surgery on me ten days after my biopsy!  I fired him and talked to another urologist, an RO and a medical oncologist.  In between meetings I continued to read and ask questions here.  I think most of the docs appreciate thier patients understanding a little, although I think it also intimidates some of them.  Helps you weed out the folks who are truley trying to help, vs the ones looking to make you another payday for themselves.  Maybe that's harsh, but it's what I found.

Keep doing your reserch and you'll find yourself more and more confident.  Best of luck on your journey, and always remember it's YOUR journey.  You have to live with your decisions.  I found it to be the heardest part (making a treatment decision), but in the end, I felt good knowing it was MY decision.  Let us know how we can help. None of us are doctors, or pretend to be, but we've been through the treatments and endured the side effects (if we had them), and not all doctors can say that!

Mike

toyoung, oh, I am going to get a second opinion and possibly more. My Doctor agreed that I should not tell anyone until I had digested it and that has proved to be valuable advice. I would say that it may not be appropriate for someone that is married. Early on, I could not deal with it. How would I expect those close to me to deal with it when I can't. Of course, I will tell them in due time but I am glad I did not do it too fast.

Thanks for sharing your perspective.

Daig, sounds like a sensible choice.

Good luck,

Jim