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Update: saw my GP today

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Posted 12/5/2008 7:50 PM (GMT 0)
 

My GP gave me more time than my URO and I was less of a basket case than Wednesday. Had a bone scan done this morning. Tech ran the device along the length of my body and then told me to stay for a 180 degree scan around my mid-section. Is that normal?

I've updated my stats based on my GP visit. Anyone know about HIFU honestly?

PS: My GP is about 73...looks like Robert Redford and aged less than Dick Clark ever did...had him since I was 8...and he delivered all 3 of my kids....I digress.

Caught my wife crying this morning. Broke my heart. Broke down myself. Not for me, but for what she feels. darn what a fine woman! Five minutes of a total hug helped us both.

Is HIFU another scam or is it as bad as Cryo or the other options?

My doc said only real stats are on radical prostate removal, but new technologies are moving quickly. Any advice?

Searching at full speed...Mikey

 

Posted 12/5/2008 8:47 PM (GMT 0)
I don't think the FDA has approved HIFU in the USA as of yet. But I could be wrong as the medical field moves at a pretty quick pace. It wasn't available at least three months ago.

Do you know what stage they gave you yet? I am assuming by your numbers it is T1c or a T2c if it was detectable by DRE. From the numbers you are in a good position for a cure with treatment, so keep reading on what will be best for you. Just remember, don't always choose your treatment plan based on the side effects. There are those that will claim fewer side effects on certain treatment plans, but aren't always necessarily true for everyone. In any treatment plan, to have a statistic someone had to be below the curve and those above the curve so to speak. Dealing with cancer you can never be quite sure which side of the curve you will be on...only a best guess.

One more thing...the anxiety will subside with time (and support from loved ones)...don't let it get you down too much. We all have been in your shoes at the beginning. I remember when my wife cried one time...it made my eyes well up...she didn't deserve this I thought. Then I just turned in a circle in front of her and asked her if she saw any expiration date on me. Made her laugh and it eased the situation.

Added:  Yes on the bone scan...pretty much normal.  I had several additional scans at different angles due to the 'uptake' that was found.

Posted 12/5/2008 10:19 PM (GMT 0)

 Many thanks LV-TX and Selmer,

I have found what may be a positive. Dr Joe Chin is a doctor and professor at one of Canada's best medical universities. UWO in London, Ontario (near me). From articles I've found and help on this site, he has participated largely in:

1) Cryo

2) HIFU

3) DaVinci

4) open and many others

My GP spoke of him and his team highly for prostate cancer in this area...today. My URO didn't mention him. My GP said if he referred me to him, he would do one of many possible options...but, he would perform the procedure himself...I asked that specifically.

I believe my GP was also wise when I asked him who has the best rep here for prostate removal...he said no one. All have problems somewhere with procedures and side effects.

Maybe this is my next step in looking at this.

Anxiety still high...Any info from others on the above would be gratefully acknowledged.

BTW all 6 DRE in last 12 months were benign or nothing found. Prostate size is 42 or 44 cm squared on TRUS...I'll get correct number tomorrow and update my update.

Thanks all...Mikey

Posted 12/6/2008 1:54 AM (GMT 0)
Hello again, Mikey

If I am correct, HIFU is the procedure not done in the States, so have no knowledge of this. Sounds as if you are on the right track by going to London to get treatment. Glad you are making progress on this uphill battle. Keep in touch.

Bob
Posted 12/6/2008 3:25 AM (GMT 0)

Hi Mike,

Hopefully the GP has calmed your nerves somewhat. HIFU is legal in Canada and in stage three trials in the US. It is an out patient procedure. I looked at this when considering my own treatment options. I would have traveled to Montreal or Toronto. I believe you said you were in Canada so one may be close to you. I also investigated Cryo. Very similar procedure only they freeze everything rather than heat it. The doctor I spoke to about the cryo also does the HIFU in Canada. The cryo is done in the US. His name is Dr Steven Scionti. He not only performs the procedure but also teaches it to other doctors. He is located in Hilton Head, SC US.

I did not choose either method due to the evidence of lymph node involvement. I went with IMRT/IGRT. Very little in the way of side effects related to the radiation. I am also taking hormones and have the typical side effects from that.

I have just completed a book by Dr Myers that you may find interesting. And I will also recommend a few others. There is also a book by Dr Peter Scardino that explains the medical jargon and range of treatment options quite well. If proton beam is on your list then I suggest the book by Robert Marckini. If you are interested in brachytherapy try the book by Thomas Farrington. The books by the doctors are both good. The other two books have some bias as they both recommend the respective treatment that worked for the author. But, the information is factual and accurate or at least agrees with other sites I have checked.

As Selmer said take some time to research, question and digest all of the information. I took about six weeks before making the final decision as to what and where and who. After that don't look  back and don't second guess your decision.

Good luck to you and hope for peace of  mind to you and your wife.

Don 

Posted 12/7/2008 3:26 AM (GMT 0)
Your biopsy is similar to mine as far as involvement. My gleason was higher and I had perineural invasion. With all of that said the pathology after removal was good. My point - don't get overly anxious. One thing you will learn on this forum is that there are guys with all degrees of diagnosis and most are doing very well. The majority of people also get cured. It sounds like you have a strong prospect of cure, and you have equally good prospects of no ED, and no incontinence. You do need to make some wise choices concerning treatment, and I as others strongly suggest you do a lot of reading to make yourself educated regarding your options and best treatment for what you want to achieve. Education, and knowing you have made your best decision will calm the mind.

I know the idea of having "Cancer" is a lot to swallow, but many men have it and you are still lucky that you have caught it before it gets worse. Hang in there you will be fine!
Posted 12/7/2008 4:22 AM (GMT 0)
hi Mike,
slow down, nothing is going to happen overnight, you don't have to make a decision right away, it will be your decision, don't be rushed into something you may not be comfortable with next week when a different procedure is recommended. It took me 4.5 years to come to a decision, I too considered the options open to me including going to Oz for HIFU, settled for brachytherapy in the end, returned to work 2 days later, no catheter, no flomax or pain killers after 2 weeks. Not saying it is like that for everyone, but it was right for me.
Posted 12/7/2008 4:29 PM (GMT 0)
Read "Living with prostate cancer" by Dr. Patrick Walsh head URO at John Hopkins. Great source of information. Really helped me make decision. Good luck. Had open surgery Oct 1st, no problems. PSA 0.00 last week. Have leakage but that's pretty normal.
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