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Just diagnosed with prostate cancer

airwood58
Posts: 5
Joined: May 2012

I just found out yesterday that my prostate biopsy was positave for cancer. Nosw I have to go back to Shands hospital and my wife and I have to make a decision along with my doctor to see what the next step is. Not only am I now battling cancer, I also have sarcoidoisis which is a autoimmuine disorder, asthma copd and emphazema. I have a family history of cancer and my uncle went through seeding, radiation therapy and hormone therapy. I also found out about robotic prostocemy. I would like to hear other peoples views on both procedures. I am 58 and I have heard good and bad things about both procedures could anyone help me.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Airwood,

Welcome to the forum but I wish you didn't have to be here. All of us here have had to go through the shock, fear, and confusion associated with this diagnosis. Certainly your wife is also experiencing many of the same emotions that you are.

The first consultation with your urologist is an important step in determining what your next steps might be. The doctor is supposed to explain the cancer diagnosis and lay our the various treatment options. Before you and your wife meet with your doctor I hope you take the time to read back through several pages of posts on this forum to get a feel for the pros and cons of the many options you have.

Prostate cancer is usually not fatal. Only one in 32 men in the United States actually die from complications resulting from this disease. Most men die of something else. The number one killer of men with prostate cancer is heart disease, just like the rest of the population. Keep in mind that prostate cancer is usually (but not always) very slow growing and it is likely that it has been there for several years and has just now reached the point of detection.

Different treatments are applied to different stages of prostate cancer. In your post you left out some important information that you need to have at your fingertips when your are considering your treatment choice. What is your PSA history, , the Gleason score (from your biopsy), how many biopsy cores were taken, how many were positive, and what the percent involvement of each positive core, the results of the DRE exam, whether or not you have any other physical symptoms (like BPH, an enlarged prostate, urinary difficulties, etc.) Once you share this information men who have had similar diagnoses will surely share their experiences and information.

As you suggested in your post there are pros and cons about the different types of procedures. No treatment is risk free and none are guaranteed to "cure" your cancer. Typically men decide to have their prostate removed through surgery (including robotic surgery), elect some form of radiation treatment (seeds is one type of treatment), and often men with with intermediate or advanced cancer also receive some form of hormone therapy. For men with low risk prostate cancer active surveillance is increasingly being utilized.

Now is the time to educate yourself on the basics of the different treatment options and their potential side effects on your quality of life after treatment. Since your urologist is a surgeon he will most likely suggest removal of the prostate. Be sure to get second opinions on this and not just from other surgeons. Investigate the various forms of radiation and consult with a radiologist (don't just take the surgeon's word for it). You will find it useful to also consult with an oncologist that specializes in prostate cancer in your area. I also suggest you look into getting a second opinion on your biopsy result as this is a very subjective assessment and depending upon the experience and background of the pathologist the results frequently vary. Since your treatment choice to a large part will be based on the pathology of your biopsy this is important.

Another good idea is to begin collecting all the medical paperwork associated with your diagnosis. Be sure to ask your GP and urologist for copies of EVERYTHING and ask them to explain anything you don't understand. Taking notes or recording your conversation with the doctors you consult with is another way to be sure you don't forget. In my own case I don't remember much of what my doctor said after "Unfortunately, we found cancer ..."

I was diagnosed 2010 at the age of 59 with low risk prostate cancer after a PSA reading of 4.2 ng/ml. The biopsy showed 1 of 12 cores positive with 15% involvement and a Gleason score of 3+3=6. The DRE was normal and there were no physical symptoms or history of prostate cancer in my family. Although the diagnosing urologist recommended surgery, I consulted with other surgeons, two different radiologists, an oncologist, and doctors who specialize in proton therapy. By the time I was done I had consultations with six doctors. Eventually I elected a form of radiation known as stereotactic body radiation (SBRT) delivered by the CyberKnife system. I was treated in June 2010 and have suffered no side effects.

When making a decision, I found it useful to make a matrix that listed each type of treatment that detailed side effects, convenience, effectiveness of treatment (based on studies I had read), cost, insurance coverage, and so forth. The most important aspect of this was quality of life following treatment. I did not want to risk ED, urinary incontinence, or bowel problems. Happily, my choice worked for me but as I mentioned earlier, there is risk with every treatment. Make sure you understand them.

Best of luck to you as you go through this challenging time.

K

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

Another welcome to our forum. You may not know yet but it would be helpful if you could share your PSA level and your Gleason Score. Make sure and ask for them from your doc when you meet with him.
Those are two very important markers to keep on this journey.

Kongo has given you excellent advise all ready. So rather then rehash I will give you brief update on myself.

Age 54 diagnosed with Gleason 7 (4+3). After extensive research and weighing options I went with Robotic surgery at Vanderbilt. I've had excellent results and August will mark my 3rd year anniversary of my surgery. If you choose Robotic - make sure and get a surgeon with a large number of procedures under their belt. Look for in the 1000's. It has a high learning curve.

My Dad - Treated with Proton Radiation Gleason 6 back around 1996. He is doing Great and no signs of recurrance.

A good friend at Church - He was treated with seed implants about 15 years ago (Not sure on his Gleason) But he is also doing great today.

So you see there are various choices and they all have the same goal - Get you cancer free!

Keep us posted on your journey! Several of us have been on here and are more then willing to offer support and positive info.

You have other factors such as the asthma copd and emphazema so research carefully and ask the questions to your doctors.

lewvino (larry)

Swingshiftworker
Posts: 634
Joined: Mar 2010

Don't know the details of your prognosis, since you haven't provided any basis info regarding your PSA, Gleason score or staging. The treatment depends largely on these factors.

That said, I'm a strong opponent of surgery (either open or robotic) for men w/early stage PCa (Gleason 6, PSA 10 or less and Stage T1c).

Here's a link to a paper which goes into detail about why surgery is recommended by urologists even when it's not necessary and when they know the risk of failure Doesn't mean that surgery can't work for you but there are other equally effective means of treatment for PCa without the risks presented by surgery:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

I had early stage PCa and, instead of surgery or low dose rate (LDR) brachytherapy (BT) aka "seeds," I chose CyberKnife (CK), a form of steretactic body radiation therapy (SBRT), which IMHO is the most effect method of treating early stage PCa currently available:

Here's a link to a video, presented by a Dr. Fuller, which provides a good overview of CK and its advantages over other forms of treatment:

http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

Don't know if surgery or CK would be appropriate in your case or not but you asked for general info about various forms of treatment and these two links give you a start in evaluating at least two potential forms of treatment available.

Good luck!

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

I had this surgery in Jan of 2011. My doctor explained all of the treatment options to me. He explained that this surgery was a good way to treat my cancer. There are a number of different treatment options that need to be looked at. The surgery took about 3 to 4 hours I also had a double hernia that needed to be fixed. My Doctor explained and indicated that this surgery is not something that he does if ones over all health is bad. I had to go thru a pre surgery screening. It took me about 6 weeks of recovery before I was able to return to work. I had some pain the first week and was up and walking 10 hours after surgery. This surgery has left me tired and has slowed me down this past year. I work 12 hr days and walk on the average of about 4 to 5 miles a day, On my days off I take it easy now. The surgery for the most part left a little pain, but it went away after a couple of weeks. The side effects are bladder control and varying ED issues, this is getting better over time. I now walk everyday and try to keep active. Now the question is how advanced is your cancer, what is the PSA and Gleason scores. My Gleason score was the Bad 7 and all of the biopsy samples taken was between 40 to 60 percent cancer, there were 18 samples taken. The Doctor informed me that I had an agressive form of this cancer and that it needed to be treated. The cancer had not spread yet and was confined to the prostate. Keep in mind that all treatment methods have side effects, these can vary from one person to the next. I was 61 when I found out that I had prostate cancer. Right now you are going thru a lot of confusion and have many questions. It is good to have your wife with you, my wife helped me keep the information correct and fill in the blanks. Take your time and have the doctor explain each treatment method, above all ask questions. This was the most difficult decision of my life so far. Take care.

winespider
Posts: 2
Joined: May 2012

Hi Airwood58,
My biopsy was positive and my Gleason score was 8. I went with robotic surgery because of the high Gleason score and the posibility that the cancer had spread outside of the prostate. 9 months later I was put through radiation treaments, and the PSA count returned again. If you have a Gleason score of 7 or 8 ,Your age suggests that surgery would be your best option. If the cancer is a gleason score 6 I would consider the Proton Radiation treament. Proton radiation is less invasive than spot beam. I had the spot beam radiation, and had I known more about it befor hand, I would have gone somewhere where the Proton method was available. Several men from my area have went through the Proton treatment method and have had no problems and no cancer returning. I have had the Lupron drug treatment and chemical castration which seams to be working for now.

airwood58
Posts: 5
Joined: May 2012

I had the RP surgery on June 7th and I have been back to see my doctor. He told my wife and I that the origional gleason score was incorrect. After getting the biopsy report the doctor told us that the gleason score was a 7 not a 6 and a T3C not a T2C as origionally thought and the cancer wasn't encapsulated but had spread to the surronding area. The doctor took out tissue all around the area. He said he THINKS he got it all. I worry that he didn't get it all. All it takes is a few cells that wasn't taken out to spread to other areas of the area like the bladder or liver. My doctor wants me to get a PSA test every 3,6,9 and 1 year. what if it spread and he is waiting. Should I ask him to have a PET scan done just for my own piece of mind. Because of family history with prostate cancer and I am on Immuran which causes cancer and I have Sarcoidoisis which is a autoimmuine disease which increases the risk of cancer I worry that I will have to deal with cancer in other areas. The other problem is constant urination ALL night long. I pee and I feel like I still have to go. It is affecting my sleep. I am peeing more after the surgery then I did before surgery. I also have gas and constapation. I am 3 weeks post surgery. I don't know if there is a problm or just the healing process. If you have any suggestions I would greatly appreciate it.

VascodaGama's picture
VascodaGama
Posts: 1549
Joined: Nov 2010

Hi Airwood58

You are not the only case that got upgraded (worse scenario) after surgery. The Gleason score 7 is intermediate but you should request for the prime pattern/grade they found. Was it a 3+4 or 4+3?

Pattern 4 as the prime means your cancer is more aggressive and got higher risk for recurrence. The pathological stage also indicates that you got extra capsular extensions placing your case in higher risk for metastases.

The PSA will be an important marker to evaluate your progress. Usually doctors do the first PSA post-op three weeks after surgery, and then repeat the exam one or two month later.
Depending on your initial PSA pre surgery, after surgery it should go down to undetectable levels. My doctor’s threshold of success was 0.06 ng/ml. What is your doctor’s remission level?

You could request a PSA test now to compare results and for peace of mind. You do not have to follow your doctor’s schedule.
A PET scan would help you in finding more details but there are limitations and the equipments give false negatives when the tumour is small (PSA<10). Newer modalities with newer contrast agents (C11, F18, etc. and tesla 3) are better to detect metastases. Nevertheless I would wait for the PSA results firstly.

Hope for the best.
VGama

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