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diagnosed today

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi everyone,
Just diagnosed today with PC.
Stats are:

10 cores taken
Number of samples affected 2
5% and 50%
Gleason 3 + 3
T stage T1
PSA 5.5

I'm seeing the surgeon and oncologist in 2 weeks
but I'm edging towards the robotics.
Obviously a bit shocked at the moment but most people on here seem very positive
so any advice gratefully received.
Does anyone have experience of this in the London, UK area?

Thanks
Mike

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Mike,
Glad you found this forum and hope it will be helpful to you. I am waiting for my DaVinci surgery scheduled for August 12th here in the USA. I would suggest you read all that you can before making your decision. If you go with the robotic surgery find a surgeon with as much experience as possible. The procedure has a high learning curve. My surgeon that will perform mine has performed over 2700 with the robot and 2500 with traditional surgery. It appears that the robotic is the 'gold standard' here in the states but other treatments also work.
I explored 3 options before settling on the robot. Also depending on your age impacts your choice.

I'm 54 and have 5 cores of 12 with cancer graded at Gleason 4+3 and 3+4.

Good luck and keep us all posted.

Larry

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Larry,
Thanks for the response.
I forget to say I'm aged 51.
Your surgeon choice has a lot of experience by the look of it.
I will be seeing my surgeon in a couple of weeks and will ask
about his numbers with both surgeries.
Good look for Aug 12th!
Mike

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Sorry to hear you have joined our club. Like Larry said do all the research and reading you can take. The more you know the better.
I had my robotic surgery on the 15th June 2009. Doing OK, still some issues, I would do it again no matter what.
Keep your head up and ask all the questions you can think of. There are a lot of very informed guys here.
I will keep you in my prayers.
Keven

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Kevin,
How are you feeling after the op?
How was the 1st couple of days and have you had
a post op PSA test yet?
Mike

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

I am doing OK.
First couple of days were pretty rough, really sore to move around getting up and down. The catheter was no fun at all, but necessary. The time has gone so fast it is amazing. I'm still not ready to go back to work. I don't believe I could do my job, bathrooms are a fair distance from where I work.
Still have a little internal soreness if I do to much.
I have a post up on pain while urinating. It hurts when I pee and I get perinial pain sometimes, it is pain like you get hit with a hammer in the butt when peeing.
It is strange but the doctor said it is normal.
I have not tested my sex life yet, still sore in the tip.
I just today received the PSA result's from my first test post op.
0.01 wooohoooo. My wife and I am super happy. I can take the peeing pain..lol
Keven

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Keven,
Great news on the PSA.
Yeah, bathroom locations take on a new significance.
Inconvenience seems a small price to pay.
How's the erections if you dont mind mind me asking?
Mike

kreinholt's picture
kreinholt
Posts: 35
Joined: Mar 2009

Mike, obviously recovery is not always the same for everyone. I am 48 and had the Da Vinci on 5 Mar. I can tell you that my recovery so far had been rather easy. Haven't conquered the incontinence quite yet but have improved and adapted to it somewhat in my daily routine. Still maintain an active life with some advance planning. I can tell you that if you are struggling with what procedure you will opt for, the Da Vinci procedure is king. My recovery was quick with little to no pain. Mainly discomfort when I got out of bed or coughed, but that is expected after surgery on the abdomen. I was pretty much up and about in two weeks. Incontinence is still an issue but I keep doing my kegals and can now hold large amounts in until I reach a bathroom and also smaller amounts when I get up from my desk at work. Took about two and a half much to see any improvement and even experienced backwards progress first before it improved. Worried me at first but I didn't get too discouraged. My advice is to start kegals now. It will pay off after the surgery. Have had no problems with erections (with no drugs) although have not attempted sex yet due to the fact that there is still some leakage. I have never liked condoms but that may be the answer. My first month PSA was .068 and my recent three month was .022, so, so far so good. Keep us posted Mike.

Kurt

Bill_4's picture
Bill_4
Posts: 29
Joined: Jun 2009

Hello Mike
Welcome to this forum. I am having robotic surgery this Monday morning. I can appreciate the place you are in. It took me about 6 weeks to do the research, get two consultations (radiation and surgery), speak with a few post-treatment patients and read the helpful information on this forum. There are many good books including the Complete Guide to Prostate Cancer by the American Cancer Society and the Guide to Surviving Prostate Cancer by Patrick Walsh, MD. I was able to find several men locally that had surgery 3 to 6 weeks before mine. It was helpful to talk with people who had just gone through what I will shortly experience. What I learned is that having an experienced physician who you trust and are comfortable with is important. However, don't be put off if you don't have a surgeon with 1000's or even many hundreds of surgeries completed. Some people say that a competent surgeon can skillfully performed this surgery having done a few hundred surgeries. Each of us is unique and will come through surgery and healing in our own way. What medical facilities are in your area, the degree of your cancer, your age and in the States, what insurance you have, all play into the treatment decision. I wish you well and am glad to answer more questions. Our numbers are similiar:
PSA 4.56, 3+3 = 6 Gleason, T1c, age 60. Surgery in 5 days.
Bill

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

...you miserable sod .

Seriously--sorry you've got to be here, but you'll find lots of guys here who've been down the primrose path before you, myself included. The good news would seem to be that, with your good numbers, you've got LOTS of time (months) to sit back and learn, and read, and absorb, and make the right decision for you. Every one of us is different, and what was right for me...

Anyhow, on the subject of surgeon experience (if you go with surgery), see (open surgery) http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2637145 and (for laparoscopic) http://www.ncbi.nlm.nih.gov/pubmed/19342300?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum. The short version is: not every surgeon learns from his mistakes, but a tyro will have more problems (with YOU) than an old hand. For robotic, don't settle for less than about 750 operations. Ask about the long-term outcomes (10 years) of his patients.If you can't find a Really Good Surgeon, consider buying an airplane ticket to someplace where you can, or else consider some other technology, which in your case might be radiation or HIFU.

PS. If you go with robotic, my experience may be useful to you. Go to http://www.sv-moira.com and scroll down to the "Prostate Cancer" link.

Good luck.

Another Larry

gaburrell
Posts: 25
Joined: Jul 2009

Hi Mike,

I'm 54 with a gleason score of 7 (3+4) and PSA of 6.4. You have some time to do alot of research before making a decision, also you will need more tests to determine your stage. I am at the end of the staging phase and about to make a decision since I was diagnosed about 2 1/2 months ago.

I know how nervous this can make you. Joining this group has been helping me here in the USA.

I also suggest going to the "You Are Not Alone" website http://www.yananow.net/ and downloading "Strange Place" pdf which is a 42 page all you need to know booklet on Prostate Cancer.

Best of Luck.

Gil

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Mike here is another great website...

http://www.ustoo.com/

To answer your other question. I have not tried my sex life yet, still irritated in the tip.
I have woke in the middle of the night with a few half staffs though.
Take care.
Keven

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Thanks everyone for your replies, all very useful.
The information is a lot to take in at the moment.
The next scary step for me presumably will be staging?
Mike

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Mike,
As you are finding out their is literally a TON Of information out there which is good but can also be very overwhelming. Keep focused on the good news, from your numbers it looks like your cancer was caught very early!

Don't get overwhelmed with staging...Your doctor should all ready be able to tell you that if he has not all ready. I believe you said they found 2 out of 10 samples. Was he able to actually feel anything during the DRE? (Digital Rectal Exam)

This link might help you:
http://www.prostatecancerfoundation.org/site/c.itIWK2OSG/b.47293/k.D232/Diagnosis.htm

The tree tests I had done were all painless.

I had an ultrasound done (Yea I found out I wasn't pregnant, The cute nurse that ran that test said all men use the same joke when they have the ultrasound done) - Test is painless.

Had a urine flow test done, you just pee into a machine that measures the force of your urine.

Had a CT Scan done of the pelvic area. Again painless and a cute nurse!

The Doctors nurse talked about doing a bone scan but the Dr. decided it was not needed for me. I believe Usually done at the more high end Gleason scores.

If you ever want to chat offline shoot me an email at lewvino@yahoo.com

I've talked to a couple guys offline on this forum and via phone (Thanks guys you know who you are)

Also look into a prostate cancer support group in your area. Word of warning the guys will most likely all be older then you but can also provide you support.

Larry

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Larry,
There was nothing unusual found on digital exam.
I was told it was T1, but that's not staging is it?
I'm looking at the HIFU ultrasound treatment but cant find that
much info on the long term results (not surprising as it's new I suppose)
Cute nurses are a bonus, I must remember to have an original joke to hand:)

Mike

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Check this site out - http://www.cancerhelp.org.uk/help/default.asp?page=2720

T1 is staging. I was staged at T2B.

I actually looked at 4 treatment options in depth.

1. Proton Beam Treatments - My dad was treated with this in 1997 for his prostate cancer. I ruled out since my insurance would not cover
2. Seed Implant/Radiation Combo - My local urologist told me that I would need both not just one if I went with this method due to my cancer being the 4+3 (7) which is borderline aggressive.
3. HIFU - This is not approved in the states though I did research and would have to go off shore for treatment to either Mexico or Bahama's. Rule out again since it is not approved then my insurance would not cover. I also looked into clinical trials for this but have to be over 60 (I'm 54) and I believe Gleason 6 or under. Yes HIFU is relatively new.
4. Robotic and Traditional surgery - I Chose robotic for August 12th.

Larry

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Larry,
I understand the T1 bit, I think, but presumably
I have to be scanned to see if it's travelled outside the capsule?

I think the HIFU is available on the NHS in the UK, but
it wasnt suggested to me at the biopsy meeting.
That site is interesting, thanks.

MIke

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

You will find if you talk to a surgeon they recommend surgery.
If you talk to a radiation Doc they will recommend radiation.
Talk to seed implant and they recommend seed implants.
Talk to a HIFU person and they will tell you how great HIFU is.

That is what is unusual about this cancer. There are about 8 or more treatments to pick from and you need to decide for yourself and wife/partner/significant other what is best for you.

I'm not a medical Doctor (So ask your doctors) but I would think that your cancer is contained. The biopsy is kind of a needle in the haystack hunt, since they are sticking the needle in random. The more cancer the more likely to hit a spot. I believe you said they found 2 cores out of 10.

Some men want the cancer out of their bodies so they choose the surgical removal.

You may not of read this yet but with radiation it forms scar tissue which can cause problems with surgery later on. I'm not sure if HIFU leaves Scar tissue or not but would think that it does since it is destroying not only the cancer but the prostate by the HIFU Waves.

Ask your Doctor what he thinks of HIFU. If you can get names of other men that have had that treatment talk to them but remember they will probably be biased since it worked for them.

I'm trying to keep open minded on my journey and decision. You get one chance up front to get rid of the cancer but if it does come back then what's next? With surgery if my cancer would return then I can still have radiation.

When I talked with the HIFU doctor (after I made my decision for robotic surgery) He stated they could repeat HIFU but again since not covered in the states It would be a significant cost for me out of pocket. So I would be paying out of pocket for the procedure perhaps 2 times.

Larry

gaburrell
Posts: 25
Joined: Jul 2009

T1 is actually staging but it may be preliminary if you have only been as far as the biopsy additional tests are needed to determine if the cancer has spread out of the prostate. Your numbers are low so that may be your stage.

Gil

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

HIFU appears to be a treatment mode that some men do well with: low volume gland, low percentage tumor, non-aggressive cancer.

I had a fascinating exchange with a HIFU advocate a few weeks ago, after I made the same "it's new" (implied "unproven") assertion. They came back with "No, it's been around 15 years!" To which the response is--then where are the long-term studies (10 years+) on survival rates and side effects?

There was a recent study published in London (Br J Cancer. 2009 Jul 7;101(1):19-26. The NHS summary is here:
http://www.nhs.uk/news/2009/07July/Pages/Ultrasoundforprostatecancer.aspx
) in which some doctors used HIFU on 172 guys. It makes sobering reading, if you can lay your hands on it. The NHS take on it is that HIFU should at present only be offered as part of a clinical trial (i.e.: are you desperate?). If you can get the article, read carefully their definition of "potency" and see whether it matches your definition, then review the statistics on return of potency post-procedure, especially in comparison to other treatment modes. Much of the unimpressive results in that study can be attributed to "learning curve," and you need to ask yourself whether your operator will do better.

I would like HIFU to succeed. We want all the effective weapons we can get in our arsenal, because different weapons are right for different guys. I look forward to seeing articles published in refereed medical journals that demonstrate that success.

The other Larry

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Larry,
I read the shortened version from your link.
What did you make of the full version?
Thanks
Mike

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

For a more professional appraisal than I'm capable of, have a look at...

http://prostatecancerinfolink.net/2009/07/04/hifu-for-localized-prostate-cancer-a-series-of-172-uk-patients/

...which I thought was reasonably objective. I've lost my access to the full document, which you can get here:

http://www.nature.com/bjc/journal/v101/n1/pdf/6605116a.pdf

or maybe for free in your local library.

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hmm, the HIFU doesnt look so good under that critera...
Mike

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

One reason I thought I would mention on why I choose the Robotic Procedure was that at least in my thinking was this:

With the Robotic you know that you will have:
1. Urinary issues since they have to cut the urinary tract and stitch back together
2. Issues with erections

Now in Theory being young and having this happen as a result of surgery...hopefully our bodies will adjust and overcome both issues with time.

With Radiation and some other treatments the issues with erections I beleive will usually start perhaps 5 years down the road. That is five years where my health may or may not be as good as it is today. So I'm hoping to tackle those issues while I'm younger rather then in my case 5 years from now when I will be 60. I turn 55 in Sept.

In prepration for my upcoming surgery I knew I was overweight so Since April I've been working on loosing that weight and happy to report that I have dropped 37 pounds.

As a result of the weight loss my Doctor just last week cut my diabetic medicine in half!

So of course all of this should also help my blood pressure and healing ability post surgery.

Of course there are no promises but My doctor seems to think that I will do fine overcoming the two big side effects.

Larry (lewvino)

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Larry,
Impressed with the weight loss...
Yeah, I understand the implications of the radiation path
which is why I'd like to know more about the HIFU.
Seems that most big hospitals and surgeons arent too keen about it.
Mike

hopeful and opt...
Posts: 1313
Joined: Apr 2009

Prostate cancer is very slow growing disease. As one of the other poster mentioned, do not rush, but take your time to make the right decision.

It is critical to get a second opinion on your biopsy so you will not be under or over treated. It's very complicated to figure out the gleason score, so you want to have your blocks sent to an "expert", not just any lab. I attend a lecture here in CA. where the medical oncologist, steven Strum (an expert in the field and author of a Primar(sp) on prostate cancer talked about sending pathology for his patients to a lab in Germany( I don't remember the name of the lab.

Also, there is a test MRI endorectal plus a Spectrocopy that is at major hospitals that will show nodule involvement plus define the tumor in your prostate.

If you decide to go for say robotic surgery, do not worry about going to a different geographic location. You get only one operation, get the best.

I know that your 51, which is young, but active surveillance can also be considered. I'm not sure if this is a good choice for you, but look into it.

We are with you.

Ira

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi Ira,
I'm seeing the urologist and oncologist next week
Just getting a list of questions together, on top being
"Is it contained?"

Mike

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Hey Mike,

You are definitely in the right place (this forum) for the research and data collecting. I am 55 and 3 months post robotic. I too was a T1. Had two areas of cancer but, contained to prostate lobes.
I still have incontinence but, getting better. Erections have not happened. Remember, removal of prostate is a form of birth control.??? When the arousal function recovers we have "dry" ejaculations. This means there is no semen or fluid to ejaculate.
There is never too many questions. Good luck next week.

Jim (shubysr)
We're here for ya!

bbjr
Posts: 2
Joined: Sep 2009

Hi Mike:
My name is Bill. I live in the US in Michigan. I suggest that you go to the website for the Lance Armstrong Foundation. They have a wealth of information for all types of cancer & links to many sources. They will send you a free book that will help you to get organized & enable you to take charge of your treatment. I would gladly have paid good money to obtain this book. Right now you are confused & more than a little scared, which is normal. You are now a member of a very large, world wide fraternity. Good luck, & bset wishes.

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