Prostate cancer?

[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

[NY_Newbie]

No advice, but prayers are with you and hubby!

[TheVillageChicken]

Got it in 2001 and had seed implants. Held it off for ten years with no side effects. It came back in 2012, and my Urologist back in Rooster Poot had limited options. Offered to slow it down with hormone therapy. I went to Duke University, and had cryoablation of the prostate. I have had some side effects, which the Dr says wouldn't have happened if the tissue had not been previously radiated. The good news is that my PSA has been undetectable since July 2, 2012.

Here is the important stuff. Your husband's treatment is in his hands, but the doctors will try to influence his decision. Surgeons want to operate, radiation oncologists want to radiate, etc....whatever earns them a payday. If I were starting over, I would have the cryo from the get go. They will do a full prostate mapping biopsy, and only freeze the affected areas. My urologist at Duke is The Man when it comes to cryotherapy. His credentials are stellar. BTW, I did not spend a single night in the hospital for either treatment.

[hulahips]

If they freeze affected area, would that be the end of it, other than keeping an eye on it? I'm sure I'll have more questions after Monday meantime am trying to learn what I can

[TheVillageChicken]

If they freeze affected area, would that be the end of it, other than keeping an eye on it? I'm sure I'll have more questions after Monday meantime am trying to learn what I can

If it has escaped the prostate, that won't be the end of it. In my case, a CT scan did not show any signs that the cancer wasn't confined to the prostate, and I guess they were right since my PSA has stayed at virtual Zero since my treatment. Of course, it can always recur, but not in the treated area. There is a Prostate Cancer Support Group here in The Villages. I have never attended, but I believe they are meeting next Wednesday at Laurel Manor Rec Center.

[gomoho]

Do your research and decide which option works best for you. Then, if you can go to someone that does this procedure day in and day out. We were fortunate when my husband was diagnosed. We were in Las Cruces NM and the doctor told us, I can do this surgery, but if you have the means find a doctor that is a specialist in this procedure cause he's probably done it a thousand more times then I have. Best information a doctor has ever given us. Ended up at the Southwestern Medical Center in Dallas Texas 13 years ago - and never looked back. Good luck on whatever route you choose.

[Edjkoz]

I am a Prostate cancer survivor. Please do not let anyone's comments influence your decision regarding treatment. Cancer and its treatments are individualized depending on many factors. Speak with your Urologist and Oncologist and always get a second opinion. Naturally, hearing one has cancer is devastating but try not let it overwhelm you as you move through the process. Also, there is a Prostate support group in the Viilages where you can get great info.

[Wandatime]

You can also help your body fight cancer by boosting your immune system through diet and exercise. Even after radiation seeds and hormone therapy my husband's PSA was still high. The doctors wanted to do surgery. Sheldon said no and did lots of research. Two super foods for prostrate are broccoli and red bell peppers. Sheldon ate both every day for over a year, and completely shunned processed meats and red meat. That by itself lowered the PSA to undetectable levels and they have remained thus for the last fifteen years. Not saying this would work for everyone, but even if it doesn't drop the PSA levels you'll still be a lot healthier to fight off the cancer or any side effects from treatment.

[iaudit]

Prostate Cancer Research Institute
Prostate Cancer Research InstituteThe Prostate Cancer Research Institute (http://pcri.org/)

Prostate Forum
Snuffy Myers, Prostate Cancer, VA, DC, MD, Medical Oncology, External Beam Radiation (http://www.prostateforum.com/about-dr-myers.html)

Dattoli Cancer Center
Dattoli Cancer Center | Sarasota Prostate Doctor | DART (http://www.dattoli.com/)

Visit these three websites for a wealth of information on prostate center. Also, look for a book written by Dr. Stephen Strum -
A Primer on Prostate Cancer (Second Edition): The Empowered Patient's Guide: Stephen Strum, Donna L. Pogliano: 9780965877770: Amazon.com: Books (http://www.amazon.com/Primer-Prostate-Cancer-Second-Edition/dp/0965877779)
I have a copy you can borrow. PM if interested.

[hulahips]

You can also help your body fight cancer by boosting your immune system through diet and exercise. Even after radiation seeds and hormone therapy my husband's PSA was still high. The doctors wanted to do surgery. Sheldon said no and did lots of research. Two super foods for prostrate are broccoli and red bell peppers. Sheldon ate both every day for over a year, and completely shunned processed meats and red meat. That by itself lowered the PSA to undetectable levels and they have remained thus for the last fifteen years. Not saying this would work for everyone, but even if it doesn't drop the PSA levels you'll still be a lot healthier to fight off the cancer or any side effects from treatment.
Wanda. No one is more into health than I am. I'm a fanatic and have been telling hubby for yrs to lay off the meats, bacon, etc. It's a lost cause. I also researched immediately goof foods for the prostate and came up with pumpkin seeds. Bought him a huge bag and its now on Kitchen island. We will know more after Monday.

[Wandatime]

Wanda. No one is more into health than I am. I'm a fanatic and have been telling hubby for yrs to lay off the meats, bacon, etc. It's a lost cause. I also researched immediately goof foods for the prostate and came up with pumpkin seeds. Bought him a huge bag and its now on Kitchen island. We will know more after Monday.

Oh dear; well, maybe this will turn him around. Please keep us posted on Monday's news. They have made quite a few advancements recently.

[LittleDog]

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

[tcxr750]

There is also the option of watchful waiting. If each sample only had a small percentage of cancer cells. That could be an option presented. Do some research on what the Gleason Score numbers mean. That would be used in any decisions for treatment.

[newguyintv]

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

See Dr. on Monday!

[bob47]

Commonly, prostate cancer is slow moving and something else is likely to get you first. There are, however, more aggressive strains.

If there is a sufficient amount, the biopsy samples can be sent out for genetic testing, which will give insight as to the nature of this particular cancer. Typically, the required amount is a biopsy that contains at least 5% cancer, or a minimum continuous length of 0.5 mm. Your urologist will know all about this. I think this is critical information.

I also suggest reading "Invasion Of The Prostate Snatchers", co-authored by Mark Scholz, MD, and his patient Ralph Blum. The local prostate cancer support group highly recommends this book.

Good luck to both of you.

[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]

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]

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 (http://www.prostatepointers.org/newlydx.html)

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]

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]

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

[hulahips]

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.

Haven't heard of dersch. My husband saw Roach. Wonder if they are in same group?

[Moraskifish1]

I learned I had prostate cancer after having high PSA readings over a number of years. After numerous biopsies which were negative, the last biopsy came out positive. There is a robotic surgery that can be performed. It's almost outpatient surgery. Your hospital stay will be almost overnight. I was not a good candidate because of other issues. I wound up starting with a hormone shot-then six weeks of radiation treatments. I can honestly sympathsize with ladies going through the "change" with the hot flashes. Radiation is painless although you do glow in the dark(just kidding). My last two PSA checks were zero. You will have to be checked every six months which can be a pain, but look at the alternative. Listen to what your doctor tells you. If needed, ask for a second opinion. There are alternate treatments. Good luck.

[Fredwms]

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

I never heard of opting for radiation seed treatment and not being able to be around seniors or children. I think that is BS. I had radioactive seeds implanted years ago and was only told that I could not be cremated if I died within six months. The seeds eventually lose their radioactive strength after a few months anyway. I would not let that myth deter your decision on which procedure is better. Get a second opinion.

[TheVillageChicken]

I never heard of opting for radiation seed treatment and not being able to be around seniors or children. I think that is BS. I had radioactive seeds implanted years ago and was only told that I could not be cremated if I died within six months. The seeds eventually lose their radioactive strength after a few months anyway. I would not let that myth deter your decision on which procedure is better. Get a second opinion.

My urologist told me that I couldn't let children sit on my lap for six months. Murphy's Law dictated that we got a new grandchild right after my procedure. We also had to postpone my treatment six weeks until my doctor gave birth to her baby.

[hulahips]

I never heard of opting for radiation seed treatment and not being able to be around seniors or children. I think that is BS. I had radioactive seeds implanted years ago and was only told that I could not be cremated if I died within six months. The seeds eventually lose their radioactive strength after a few months anyway. I would not let that myth deter your decision on which procedure is better. Get a second opinion.

Yes. Dr Roach definitely told us that but my husband won't consider the seeds hopefully tonight he can meet lots of guys at the support group that had it and can advise him

[red tail]

I havnt seen any comments on the Robert boissoneault oncology institute for prostate cancer treatment. my urologist has recommended them to me. any comments from anyone having knowledge of them?

[VillagesFlorida]

I had 33 radiation treatments there in 2001, after a lumpectomy for breast cancer. I could not have been more pleased with the care and treatments I received. My husband recently learned that he needs radiation following a prostatectomy 5 years ago and he was referred there. I feel that he will be in very good hands and will receive excellent care.

[hulahips]

Men with prostate cancer, watch your dairy! There is a link