[hulahips]

Back from Dr and am in tears. My husband who is 64 has prostate cancer. He is a grade 3 across the board. Basically options are cryo, radiation or surgery (cut it out) using devinci (the robot). Dr we saw today does cryo but did not push it. He did suggest we meet with the surgeon and then the radiatiologist before making decision. Pros and cons to all. This is going to be a difficult decision. We will go to support group this wed night. Any advice is very much appreciated. I want him around the rest of my life. He is going to advanced urology group here. I am crying but he's of course telling me it will be fine. Please survivors , talk to me!

[Edjkoz]

If you would like to talk, please feel free to pm me and we can talk.

[Wandatime]

Sheldon had aggressive prostrate cancer eighteen years ago. Hormone therapy, radiation seeds, good diet. PSA levels now undetectable.

[hulahips]

Dr mentioned the seeds but u can't be around children or the elderly. Didn't really recommend

[hulahips]

Originally Posted by LittleDog;109***5

I am also a prostate cancer survivor. I had the biopsy and of the 12 testings one was found to be cancer. At that time my psa was 8 but had gone up over the past couple of years. Prior to my radiation I had to do the harmone therapy treatment to reduce the prostate size. After this was done I received radiation treatment which I felt for me was the best treatment although I didn't get any second opinions. Since that time, 3 years ago, my psa testings have been like .001. So far so good.

There is a prostate cancer group which meets monthly at Laurel Manor. These meetings are open to family members also. This meeting has speakers, primarily cancer physicians. Every other month they have a mens only meeting also at Laurel Manor which is very informative and much information is discussed by either people presently being treated or by survivors. I'm not to sure of the specific dates but you can contact Laurel Manor to get the specific information.

John

John. Do the wives attend?

[Wandatime]

Originally Posted by hulahips

Dr mentioned the seeds but u can't be around children or the elderly. Didn't really recommend

Well, that was eighteen years ago and he couldn't be around kids or the elderly for a very short while. I'm sure the procedures have changed dramatically since then. HH, if you want to PM me, we can meet and I can give you some moral support. It is a tough row to hoe but you can do it, and so can your husband, if he is willing to put in the work.

[Edjkoz]

Yes, spouses are welcome

[hulahips]

Thanks so much Wanda. Appreciate it. Maybe after a few days when all sinks in, I will take you up on this

[iaudit]

Below was copied from prostate pointers website:

Newly Diagnosed

Go to the actual website as there are imbedded links within this article that takes you to more information. I also have several books if interested.

Also, Dr. Michael Dattolli in Sarasota is a prostate cancer expert and can do a color Doppler ultrasound that can help determine clinical stage and whether the cancer is organ confined.

"Ok, your doc has called and passed along the information "you have prostate cancer." What should you do next? Here is a very simple (and incomplete) sequence of steps you should consider.
If you don't already know, ask what your PSA is; ask the gleason score, and clinical staging.
Prostate cancer has 5 grades: 1-5. The pathologist selects the most prevalent pattern and assigns it a grade; he picks the second most prevalent pattern and assigns it a grade. The sum of the two grades is the Gleason score. Grade 1 PCa is the least aggressive and grade 5 is the most aggressive. Here is a good page which explores the issues.
Clinical staging represents the "best guess" of your urologist concerning the spread of your disease. The best guess is determined by a digital palpation of your prostate and the results of a bone scan. Click here for a discussion of staging.
You should understand Clinical Staging is a guess. You should not seek treatment until you have a better estimate of your actual staging. So, to accomplish this end, you might consider the following.
Get the best possible Gleason information available. Request your biopsy slides be sent to a genuine expert. While your local pathologist is no doubt skillful, an accurate Gleason score is critical. Here is a list of pathologists that are recognized by many.
Next, you should use the Partin tables to obtain a better estimate of your clinical staging. The Partin tables are a compilation by Dr. Alan Partin of Johns Hopkins of pre-op data correlated with post-op staging. Post-op pathology is exact -- it tells you exactly how you are staged. Post-op pathology is when your physician says "oops, you're not T1c, you're T3a." Go here and calculate your estimated staging. You must have a) PSA, b) Gleason score and c) Clinical staging.
Ok, you have your Partin estimates in hand. For example, if you entered 4.1 - 6.0 ng/ml for your PSA, 3 + 4 = 7 for your Gleason score and T2b as the clincal staging, you obtain the following information:
Organ contained: (35)29-40
Capsule penetration: (51)44-57
Seminal vesicle invasion: (7)4-11
Lymph node involvement: (7)4-13
Organ contained means the tumor is completely contained within the prostate (very desirable). Capsule penetration means the tumor has penetrated the prostate (capsule and locally invaded adjacent tissues) which increases the chance of extra-prostatic disease. Seminal vesicle invasion (2 small glands adjacent to the prostate) is undesirable. Lymph node involvement means the disease has the potential for spreading throughout your body. The numbers to the right (35)29-40 represent the likelihood of the event occurring. For example, (35)29-40 reflects a 29 to 40% chance of organ contained disease. 35 is the average value.
You now have an accurate view of your likely staging. And at this point, you enter the Great Unknown. Since no available treatment has been shown superior to not treating the disease, it is up to you to make a treatment selection. Personally, I believe PCa treatment has progressed to the point where treatment is superior to no treatment.
As a general rule (not always true), your urologist will recommend a radical prostatectomy. If you presented with an inital PSA of 20, Gleason score of 9 and estimated clinical staging of T2c, he might might recommend radiation (instead of a radical prostatectomy) since the likelihood of organ contained disease is very low (3 - 10%).

In terms of long term survival, there is no data which suggests you should choose radical prostatectomy (retropubic, perineal or laparoscopic), external beam radiation (photon, neutron or proton), brachytherapy (permanent implant or HDR), cryosurgery, hormonal therapy (here, here or here) or non-hormonal chemotherapy as your primary treatment. It is unusual to use non-hormonal chemotherapy as a primary therapy.

Selection of a primary therapy is a choice driven by the individual's belief "this is best for me." Carefully examine the various injuries associated with each treatment. And, I'm sorry to say, when a urological surgeon tells you "only 3% of my patients suffer from incontinence", you must ask "what exactly do you mean?" Incontinence to your physician may well mean you will only need one diaper per day. Ask for the names of 4 or 5 previous patients and interview them.

This is an important moment. Either you stick your head in the sand and say to your doc "what would you do doc if you were me" or you research the options to the best of your ability and make a choice!

Selecting a treatment. Go here and learn about the likelihood of various treatment injuries. Go here to learn about the treatments and general information. Pay close attention to the likelihood of various treatment injuries. I believe each of the treatments are equally effective (given low grade disease) if each treatment is performed by physicians of the top rank. Each treatment has a variety of treatment injuries which might help you say "no, I don't want to do that." You get to do this one time (initial treatment) and you have to live with the results for the rest of your life. Spare no expense nor labor in reaching your decision.
Post a note to the P2P mailing list and get some expert advice from docs who specialize in the treatment of PCa.
After you select a treatment, you might want to join one or more of the general discussion mailing lists. They provide an excellent line of support and you might as well share the information you have learned with other men.
Additional thoughts
Get a second opinion concerning your Gleason score. Use the link here to find an expert. It is not unusal for a local pathologist and the expert opinion to differ considerably.
Consider augmented therapies. For example, if you elect any form of radiation, hormonal therapy makes good sense. Talk to your doc, do some research and you might want to add vitamin D, hormonal therapy or 5FU chemotherapy during the radiation.
Find a support group in your area. There are so many men faced with prostate cancer who desperately need support and guidance. If you don't find a support group in your area from the, you should check with the local hospital. You can even start your own support group. Look at UsTOO, Man to Man or Malecare and they will be glad to help you locate or start a support group. In addition to UsToo, Man to man and MaleCare, Ron Koster at rkoster@hvc.rr.com maintains a fairly complete list of all support groups.
All forms of treatment for PCa inflict serious insult to your body. In particular, radical prostatectomies performed by your average urologist can turn into a nightmare. If you elect to have a radical prostatectomy, be extremely careful in physician selection. Ask your doc how he defines incontinence. Ask him how many of his patients suffer incontinence in any form. Request a list of patients treated by him and call them. Take a tape recorder with you whenever you visit your physician. If nothing else, it will make him very careful in his assertions. It's a handy way to replay the conversation later and try to understand many of the technical terms."

[hulahips]

Thank you everyone for all info. Am so overwhelmed don't know where to start. Surgery, cryo, radiation?? Who to do which one? Will go to support group tomorrow night and hopefully the members are willing to talk and share their experiences with us. I don't know how to make this decision?? It seems its 6 to 1 or half dozen other? I really need to find men who have been treated by Advanced urology as in general I am not happy with doctors here

[cmj1210]

Talk to your Medical Oncologist and listen to all of the options. I am a cancer survivor and the best advice I was ever given was to listen to my doctor. Getting advise on this forum can be good information but the bottom line is your Oncologist has your records and knows what options are be best for you. Try and relax it will get easier. In the meantime, prayers for you and your family.

[dbussone]

Originally Posted by hulahips

Thank you everyone for all info. Am so overwhelmed don't know where to start. Surgery, cryo, radiation?? Who to do which one? Will go to support group tomorrow night and hopefully the members are willing to talk and share their experiences with us. I don't know how to make this decision?? It seems its 6 to 1 or half dozen other? I really need to find men who have been treated by Advanced urology as in general I am not happy with doctors here

I was treated at the Rad Center of Advanced Urology, and Dr Dersch is my urologist. I spent my working career in healthcare and did a lot of personal due diligence when I found out I had prostate cancer. I can tell you we are fortunate to have Advanced Urology here in TV.

[Fredwms]

Originally Posted by hulahips

Hubby had biopsy and was told 2 out of 12 pricks came back positive wow this is scary. We are seeing Dr on Monday. Any advice from men who have been through this would be appreciated. Thanks

I was diagnosed with prostate cancer in 2001. My Gleason Score was 7 out of 10, a higher than normal risk. I decided not to have the prostate removal surgery and opted for radioactive seed implants and beam radiation for 30 days. It must have worked as I am still cancer free 14 years later, however, I still get my PSA test every 6 months. Hope everything turns out OK.

As a note, many doctors recommend surgery to remove the prostate but that surgery comes with a longer healing period. I was out of the hospital in one day and only returned for a 15 minute outpatient radiation treatment each day for 30 days. Hope this helps. Always get a second opinion on your cancer treatment options. There is no reversal of the lifetime effects of prostate removal surgery.

[dotti105]

The best Prostate surgeon anywhere is Dr. Vipul Patel in Celebration, Florida. He has patients fly in from all over the world to do surgery. He perfected the DiVinci method for Radical Prostotectomy. His practice is Global Robotics Institute, 407-303-4673.

Dr. Patel has done over 8,000 procedures and teaches as well as written the textbooks for this technique.

Dr. Raj here in TV, at "Advanced Urology", has done 1,200. He is supposed to be very good, but there is quite a difference in the track record.

I am a RN. I want the most experienced Dr with the best outcomes for my family. Some people will go to any doc without knowing that doc's outcomes. It make make all the difference in quality of life, for the rest of your life.

Surgery is not the best option for everyone! But if you are considering surgery, you need to see the best surgeon out there. A friend asked his Urologist "Who would you see if you were me?", The Urologist said, "Well, 2 yrs ago I was in your shoes and I went to Dr. Patel."

Dr Patel does a nerve sparing posterior approach. He moves the nerves out of the way before removing the prostate, preventing damage to the nerves that control erectile function, bladder and rectum. He has less patients with lingering incontinence, impotence and rectal leaking. These are all possibilities with Prostate Surgery. His patients have PT to control the pelvic floor muscles before and after surgery.

It is an amazing practice and if you go there you will see what I mean. They have thought of everything and do all that they can to make this very frightening cancer something of which you can be confident of the best possible outcome.

Driving an hour each way is nothing compared to getting the world's best to do your surgery, or at least give you a 2nd opinion.

It is a frightening diagnoses, and many men can carry on with "watchful waiting". But educate yourself, go to the roundtables, read everything you can get you hands on, and talk to several doctors.

If you want more information PM me.

[hulahips]

Thank you. We will Definitely see him for a consultation. I'm just not to comfortable with the doctors around here or the villages hospital