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Newly diagnosed Prostate Cancer

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

Hello everyone

My husband just had his 55 year birthday and found out that he has Prostate Cancer. His PSA is 5 and Gleason score is 6(3+3). He had biopsy done recently and just took X-ray to find out what stage he is at.

I am new on how to fight prostate cancer and want to find out all the information that would help him. The first thing I am looking for is what kind of diet helps fight prostate cancer: soy been? tomato?

Thanks a lot!

Jennifer

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Jennifer,
Sorry to hear about your husband. I just turned 55 this month and had the Davinci Surgery in August.

There are foods etc for fighting prostate cancer but don't forget that you should also look into Surgery, radiation or other treatments. My Gleason was 7 (3+4) and PSA of 5.1.

It sounds like they have caught your husbands cancer early so don't ignore it.

Soy bean and tomato's are good for fighting prostate cancer along with what they call a heart healthy diet. There are several excellent books out on Prostate cancer and would recommend reading Dr. Patrick Walsh's book on Prostate Cancer and the book Saving your sex Life by Dr. John P Mulhall. You can get both books online at any of the major booksellers. They will also talk about Diet in Dr. Walsh's book.

I have drastically changed my eating habbits since being diagnosed. Is it helping? I do not know but figure it can not hurt. I have eliminated red meat from my diet, Eating more fish and chicken. Also eating more TOFU in tomato sauce. I also have read that Pomegranite juice is great and that ACAI berry is. I take both of those in a pill format that I got a a health food store. I was buying Pomegranite juice at grocery but it is expense to get 100% pure. Most of it is watered down and mixed with other juices so the pill format is better.

Also Vitamin D is good for fighting prostate cancer and Green tea. I take my Green tea also in a capsule format since I can get it de-caf that way and am avoiding caffeine and drinking lot's of water instead. I have stopped all soft-drinks, coffee, alcholol...etc. Just water and fruit juices. Yes, I know not much fun but that is what I'm doing pre and post surgery!

My first post surgery PSA test is on Oct. 19th so am hoping for a very low number.

If you or your husband want to chat offline feel free to email me at lewvino@yahoo.com

I'm sure other's on the forum will be chiming in and also giving you their ideas.

Just remember, You and your husband are not alone, there is ton's of information to shift through. My dad was treated for his prostate cancer back in 1996 and is doing pretty good still 13 years later.

Larry

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

First all, I wish all my best to your new PSA text.

Yes, PC is not new for us because my husband's dad and his uncle had it. Seems it is family history. But both his father and uncle had PC at their 70s.

Yes, Surgery, radiation or other treatments are all in our consideration. We will find out what his urologist would recommend to us. We live in Columbus Oh area. Does anyone know who are good urologists and good surgeons in the area? Thanks very much for advance!

Now I hate myself for not point a gun to him to force him go see doctor earlier. With new job new home new baby to a new area, he hasn't had his annual check up for 3-4 years due to stress. What a bloody lesson. I just wish we are able to fix it.

Thanks Larry for all the diet and supplement information. I will go get those from store in no time. My husband hates soy bean product and OK with green tea. but I'll let him read all these helpful posts.

Larry thank you for your email address and we will keep touch with you!

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I hated soybean at first but have gotten to actually enjoy the TOFU. My wife makes it with tomato sauce, Onions, Green peppers etc to 'spice it up'. Actually had two helpings for lunch today. I used to work for a company up in the Dublin Ohio area but was based out of Tennessee where I live now so not familiar with any of the doctors up that way.

Don't beat yourself up over the physical's. A gleason 6 is very treatable with good outcomes.
If you decide on Surgery with the Davinci robot look for a surgeon with LOTS of experience. I had a choice between 1 with about 250 here local or a Doctor up at Vanderbilt in Nashville, Tn who had done 2000+ I went with experience.

I'm sure another man on this forum named Sonny will be sending you some thougths soon. He just had his Davince Surgery on Sept. 17 up at Henry Ford in Detroit. Sonny is having great results post surgery.

If you like to cook I believe Michael Milkin at http://www.prostatecancerfoundation.org/
has a cook book out on things that he has researched and used in his fight against an advanced form of prostate cancer.

Larry

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

Glad that there are so much information and website that I can learn from.

How do you find out which doctor is right for you, as far as how many surgery they had done? Just go interview them and ask question? Does urologist do prostate cancer surgery too? Our family doctor recommend a urologist in Central Ohio Urology Group to us but my husband is not crazy about him because he has to wait very long to see the doctor for just 10 minus of talking.

Thanks

Jennifer

MCSmith44
Posts: 13
Joined: Jun 2009

I don't think you or your husband should feel bad about missing his annual checkups. I'm 65 years old and have had annual physicals for as long as I can remember. Five years ago my PSA reached 4, at which time my doctor referred me to a urologist. I saw the urologist every six months for three years with my PSA remaining around 4. Eventually when my PSA jumped to 5, my urologist recommended a biopsy, which revealed two cancerous tumors each with Gleason score 6 (3+3). My urologist stated that it was rare to find a Gleason score 5 and that detection of my prostate cancer did not rate an A+ but did rate an A. My point is that your husband's cancer may very well not have been detected after earlier physicals and that his prognosis is excellent due to the early detection he has experienced.

Last year I had brachytherapy treatment at MD Anderson Cancer Center in Houston with very satisfactory results. Early detection left me with a range of treatement options, and your husband has the same advantage. The two of you have the opportunity to select a form of treatment primarily based on your evaulation of potential side effects, with the likelihood of cancer recurrence reasonably small.

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

That makes me feel better. My husband had his PSA test 4 years ago at 1.9. I have been told that PC is slow growing cancer. However in his case, jump from 1.9 to 5 in 3, 4 years is pretty dramatic. He just had X-ray yesterday and I pray for nothing worse then stage1.

by reading poster here, seems Da vinci is a pretty good option.

I wish you the best!

MCSmith44
Posts: 13
Joined: Jun 2009

As you and your husband learn more about his particular diagnosis and begin to consider treatment options, please feel free to contact me about my brachytherapy experience. My email address is marvin.smith@domtar.com.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

My name is Sonny and I have been a member here since I was diagnosed in June. All of my numbers are contained in my signature.

I was not a candidate for doing nothing and selected surgery as my route to deal with it. I am from Orlando and after much searching I selected Dr. Menon at Henry Ford Health Systems in Detroit.

Dr. Menon took my prostate out 6 days ago on September 17th. You can see my day to day posts under Sonny Day 2, etc.

Did a lot of research about the alternatives and then the Dr. You fill find that there are guys here that have gone with either surgery or one of the many forms of radiation. Just ask them and they will tell you why. The surgeons used have been some of the best there are. Sometimes the surgeon was selected because of travel limitation, insurance benefits or because they were considered as one of the best by the peers

Take your time, get all of the facts and just get your collective heads wrapped around this thing. My wife was diagnosed with cancer 5 years ago and we took our time and made our decisions about her treatment and it has resulted in a pretty good outlook for life and the future. My decision was based on these same goals.

There are a lot of quality of life issues that go along with surgery or radiation. Take your time, know them and consider them in your decision process.

This is an extremely knowledgeable and supportive forum. Ask the questions and you'll get the answers or at the very least a direction of where to start looking.

The supportive part has already started, you have already been added to the prayer lists of many.

Good luck and may God bless you, your husband and your family,
Sonny

60 years old
PSA November 2007 3.0
PSA May 2009 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

Surgery done on September 17th by Dr. Menon, Vattikuti Urology Institute, Henry Ford Medical Center, Detroit.

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

I wish you the best for your recover from surgery!

I am digisting a lot of inforatmion right now so please forgive me if I ask some beginner questions.

1, is the urologist who proferms da vinci surgery or open surgery? or we need find a surgeon to do that?

2, after you finish the surgery in henry ford hospital, are you go back to Orlando see your regular urologist in the future?

3, there is a very good urology clinic in cleavland OH, which about 3 hours away. I am thinking may be see a urologist from there. is it doable? (we have a two years old)

Thanks!

Jennifer

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Jennifer,
I'll answer some of the questions since it is the same for most guys.

My local urologist only did open surgery. He gave me the name of two men that did robotic (one local and the one at Vanderbilt, Nashville, Tn). As mentioned earlier I went with the one at Vanderbilt. My local urologist spent over 1 hour with me and my wife discussing all the treatment options and said even If I chose robotic he would still provide my follow up care. His office actually removed the catheter post surgery. I am having my first post-surgery PSA done back in nashville but then will be having future blood work drawn at my local urologist and most likely just be going back to Nashville on a yearly basis.

My main reason for chosing robotic where as follows:

1. If you have robotic or open surgery first you can have radiation as a backup treatment if needed. Most cases if you have radiation first you can not then have prostate surgery due to extensive scar tissue from the radiation.

2. I looked at two different types of radiation. A. Was proton beam radiation and my insurance company would not cover it. This is only offered at about 6 centers in the USA (My dad had proton beam radiation back in 1996 and is doing fine today) B. I then looked at a combanition of radiation with radiation seed implants. In my case they only gave me a 56% chance of being cancer free in 10 years where the surgeon gave me a much higher number.

3. I also looked at HIFU treatments but you have to go out of the country to either Mexico or Bahamas for this since it is not approved yet in the USA. Also some insurance companies will not pay since it is not approved.

4. Once I decided on Surgery then it was either traditional or robotic. I chose the robotic for numerous reasons.
a. 6 small incisions rather then 1 big one.
b. less blood loss
c. Surgical field is magnified so the surgeon can see better
d. Shorter hospital stay
e. when they remove the prostate they actually have to cut the urinary tube in two places and then stitch together. With the robotic surgery the camera can show all angles so the surgeon can actually see the bottom of the tube for his stitching. This is up under the pubic bone and in traditional surgery I read the surgeon does this part by 'feel'. That means two large hands inside of you rather then small robotic tools.
f. With less blood loss the surgeon has a clean view of the erection nerve bundles for performing nerve sparing. This is important since I'm sure you and your husband want the best chance for future sexual relations. With the magnification of the robotic the surgeon also has a better view of these nerve bundles to spare if possible. That's assuming cancer has not got into them. In my case the doctor estimated he spared 100% on the one side and 50 - 70% of the nerves on the other side. Tommorrow will be six weeks post surgery for me and am having some success using the Erection drugs all ready.
g. I did lots of research and prayer also in making my decision

6. Also in my mind I thought I'm young and can get over the two impacts of surgery quickly which are urinary issues and erection issues. With radiation you won't get those side effects until several years down the road since the scar tissue builds.

You and your husband will need to of course make your own decision as to what is important to you but you want to of course beat the cancer and look at quality of life issues.
The two big issues that your husband will face are 1. urinary leakage and 2. erections

I've been one of the lucky ones and have had no need for any type of urinary incontent pads post surgery. Some men take many months to get over the urinary leakage.

On the erection front talking frankly...it will be impacted...which is why you want a very skilled surgeon if you choose surgery. They say the farther out from surgery that you are the better the erections typically will become as the nerves settle back down since they will be subject to trauma in surgery. As I said earlier my wife and I have had success with using Levitra but it is definetly not like it was pre-surgery but am happy so far.

If you like I can email you some charts comparing open surgery to traditional surgery.
again my email is lewvino@yahoo.com

The hospital I chose was 3 hours from where we live so yes it is doable though you may want some one to watch your young one for you for a couple days.

Sonny actually travelled from Florida to Michigan for his surgery ----by HIMSELF---- since his wife is also battling cancer. As you can see we are almost like a second family on these forums and everyone is VERY HELPFUL!

Don't be afraid to ask since that is how we learn and share and there is a ton of information on this site from men in early cases to some that are battling very severe cases of the prostate cancer.

Larry

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

There are Urologist that do surgery but the one you want is the surgeon that specializes in da Vinci if that is the route you select. You want a surgeon that has done hundreds if not thousands of this type surgery. The learning curve is steep and the best of them have done at a minimum 750-1000 surgeries. My doc has personally done over 3000 surgeries. I am fortunate to have great insurance and the where with all to be able to come to him. By many in the field his surgical procedures and skill with the da Vinci is considered the Gold Standard.

I belong to another PC forum and I have seen the Cleveland Location mentioned a number of times as really good and the guys have gotten great results.

As Larry mentioned my wife could not come with me. I came by myself and have had no issues at all. All who come here stay for one week before going home because of the specialized type catheter they use. My thoughts are that they put it in, I want them to take it out. Mine is coming out tomorrow and then I will stay 1 additional day to make sure every thing is okay.

I will see my local urologist for follow up PSA testing, but I will come back here in January for the 4 month post surgery follow up. Again, they are the ones that did it, I want them to that follow up.

I know that this all is a lot to digest. Just remember to take a deep breath, take your time and try not to get overloaded and overwhelmed with the information.

Anything you need to ask, just post it. There is an awful lot of experience here and those of us who have been down the path are committed to lighting the path a little brighter for those that follow.

Sonny

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

Those information are very helpful. I will let my husband read them all.

The urologist he has seen twice, was recommended out family doctor. Every time my husband had spent lots of waiting time but only got talk to the doctor a little. That’s why we may want find someone better. Sonny, if you don’t mind. Could you please tell me what is the other PC forum you belong to. I like to go there see if I can get more information for the Urology Group in Cleveland Clinic. You can drop to my email box if you perfect not say it here. My email address is qjenxu@hotmail.com. Thanks in advanced! Also, if you don’t’ mind, can you tell me the doctor who did your da vinci in Detroit? We lived in metro Detroit over 14 years and pretty familiar with that area. I don’t know how our insurance work but defiantly, it will be one of the options. Thanks again!

Larry, your case is pretty similar with my husband’s, I cross my finger praying not getting worse. Thank you for sharing all those thoughts and information with me. I feel like we are putting ourselves in GOD’s hand when come with pick a doctor since we know nobody. We have a long way to go. We will pray for you and Sonny and everybody else here.

NM
Posts: 214
Joined: Jul 2009

Hi my name is Nick and I will give you a quick overview of my story as it might help you. I was diagnosed in June with prostate cancer by a urologist who also insisted on doing the Davinci operation. I asked how many has he done and he said about 4 a month for a 1/2 a year. I called the hospital where I was scheduled and asked if they had a more experienced doctor and was told sorry if you come here he HAS to do the surgery. I went immediately(thank god) to my family doctor and he recommended 2 other hospitals. To make a long story short I went to Danville got a very experienced and caring doctor and three weeks after surgery I am doing well so far with no incontinence at all. First get to know your doctor and have fairly good access to him or a member of his staff. Trust is a big factor in having surgery or even radiation. I choose surgery because at my age (52) I wanted the prostate out and then if needed I can still do radiation. I wont know my Psa for a couple of weeks so I am still hoping its gone and Im cancer free. Hope this helps some.....Nick.....Ps I posted a lot here as others did so please if you want to learn more do as i and others have and go back and read these posts.....Peace to both of you and my prayers too....Nick

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

The site is healingwell.com just click at the top of the page on forums and chats and it takes you to the page where you can select Prostate Cancer.

I hope this helps, I know it helped me tremendously.

BTW is was our buddy Larry that lead me to the site for the first time.

Bless you and your family.

Sonny

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

will check them!

hopeful and opt...
Posts: 1362
Joined: Apr 2009

Sorry that you have joined this crappy club.

It is a good idea to get a second opinion of your biopsy by an expert(since this it is a complicated test to analyze), so that you are not under or over treated....one experrt is Dr. Epstein, Johns hopkins. Simply have your doc send the parrifin blocks to johns hopkins.

There are various local support groups sponsored by Me Too, etc. ....contact the amaerican cancer society.

I was diagnosed in March for my 66th birthday. My numbers are 2.2 psa ( increased from 2.2 i January to 2.5 in July), 2 of 12 cores positive- less than 5 percent involvement in each, gleason 3=3=6. I have also had a MRI with a spectrocopy which showed no defined nodule involment. I am t1. I just had a molecur test by Aureon which showed a 97 percent cbance that I will not need surgery in 8 years.

I am currently on Active Surveillance. That is, I am closely monitored and will delay other treatment as long as possible, if not for life. I hope to avoid any possible negative side effects as long as possible.

Good luck

Ira

saoco
Posts: 43
Joined: Aug 2009

Hi Jennifer,i will like to hear your husban talking how he feels about his pc.
PC hit me when a was 46years old,my father had it ,and about two years ago my brother had it.
I had lasproscopi surgery about five years ago and my psa had been 0.04 thank God my brother
went to my doctor and it has been two years since and his psa is 0.05.
I do not think any diet will help much and and it depend the Dr you find one will tell you to go with surgery,other will tell you radiaction.In my humble opinion I went with surgery because I want to get the cancer out of my body and radiation in my opinion will kill
maybe all cancer cell but the prostate still will be inside of you. my father pass away in June but no from pc.he has radiation and about two years after he develop some complication from takin radiaction.any treament you guy chose have it own risk,but with the davinc and all other new technology it is getting better to fight pc.my psa was 4,gleaso (3+3)so your husban thank to God like me is in early stage ta2. I hope the advices from the group will help you.
when it hit me I was ignorant and I went trouhg it only whit the help of God but it was more than enough but you guys have us to help you.

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

My husband hasn't say much about his PC yet. He doesn't have much time to do research because he is very busy at his stressful work. He even doesn't want to talk about it with me until this weekend. He doesn't like to have surgery but he will listen to his doctor. He doesn't want to have second opinion or have another report for his biopsy. I am the one who jump up and down getting ready to fight the PC. He is not in the same page yet, I hate to say. He will make his own decision slowly but I can keep feeding him the information.

saoco
Posts: 43
Joined: Aug 2009

It seem you will be his rock,and thas is wanderful,we all need support to do fight this batle.
In here you will find all the help you guys need God bless you both.

hopeful and opt...
Posts: 1362
Joined: Apr 2009

All of us here have gone thru shock, depression and all the negative feeling during the first month or so..........Remember, generally in the vast majority of cases there is no rush to make a decision right away....however you need to keep moving to make the right decision and not hurt yourself.................good luck...............Ira

NM
Posts: 214
Joined: Jul 2009

I sent my samples to John Hopkins for a second opinion after my wife emailed them. Was told w/o insurance it would run 250.00 This was a small price for peace of mind and surprise my insurance covered it even though John Hopkins is in another state. Hope this helps....Nick

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

got address and fee information.

asked my husband make the inquire to his urology office to send slide to Johns Hopkins. (thought I couldn't do this for him because the privacy policy)

Hope he make his move soon.

Jennifer

Andiesdad
Posts: 5
Joined: Sep 2009

Hello Everyone,

I joined this site yesterday and would like to post a few comments of my own. First of all Jennifer, thank you for being the Loving wife that you sound like for your husband, we all need someone by our sides when it comesto events like these.

I turn 58 on the 4th of Oct. on the 2nd of September i went in for my prostate byopsy after givng doctor a PSA of 5.3. on the 16th of September my urologist called me and my wife into his office to explain the findings. I have stage 1 prostate cancer (we think,) the MRI was wednesday to find out if it's spread to other organs. my total gleason score was a 8 (4+4) involving 70% of the core sample. if my cancer hasn't spread, my urologist wants to remove my prostate before the end of the year and i don't mind telling all of you that i'm a little frightened. He wants to use nerve sparing radical retropubic prostatectomy but he said that he beleives that he can spare the nerves on the right side of my prostate but not the left. i know that this will be a must do surgery but i don't know if i'm more affriad of the surgery or the after effects of it. I want to thank all of you who has posted to this site for your valuable information and wish you all GOD's speed in a full recovery

NM
Posts: 214
Joined: Jul 2009

Hi and welcome to the club. I am now 3 weeks post op and will give you a quick opinion on my surgery. First when I was told I had cancer I felt deflated. Then I started researching and reading all posts here and realized I wasnt alone. I found a surgeon I trusted and didnt look back. Scared, hell yes only a fool wouldnt be. I also didnt want my quality of life to suffer but I had Cancer so I had to do something. I had 5 out of 6 cores positive for cancer. To shorten this post I had a supportive family a good doctor and now I am almost ready to return to work. I am also 52 years old. I choose surgery first so if necessary I could still have radiation but hoping its not necessary. So far no incontinence. Hope this helped and for more information see my post and pre surgery posts as well as others... Praying for you... Nick

Andiesdad
Posts: 5
Joined: Sep 2009

Thank you for your comments. funny (no not funny, there is nothing funny about any of this,) ironic. people are always the ones that; this will never happen to me. it always happens to someone else. my cancer dianosis blew me out of the water. now i know that it's not the other guy.................. I will go for the surgery and pray for a speedy recovery, with minimal after effects. but it really does help to read others stories on this site. I thank you for your time and all of everyones thoughts. and pray that all of your surgries and recovery processes go smoothly. GOD BlESS you all.

saoco
Posts: 43
Joined: Aug 2009

Right place to be.
Hi andiesdad I do not like to welcome any one to this club in reality I Wish we will not get any
new menbers but it is only a wish.so you are here and we need to help you to go trough this.
the surgery you are talking about I think is called LAPROSCOPY;the difference between that and davin is the fallowing in davin the surgery is almost fully robatic,and the instruments
rotates 360 degrees.LAP the doctor manipulates the instruments.I have LAPRO fives years ago
and thanks God my psa has been 0.04 since.I live in new york city.I did not have incontinece,but I developed scar tissus and needed a second surgery.my brother had the same surgery and dinot have any problem at all.This surgery most likely will save your life,
but it also will take somthing from you.what ever this surgery takes from you it will give it back to you slowsly you need to be patient this is the name of the game.I know your mind is going at about thousands of miles per hour but you will be fine.Have faith in GOD and he will
get you trough this test in your life.I hope this will help you.I was 46 years old when pc
hit me.

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

Dear Andiesdad, I am sorry (but glad) you fund here, a wonderful warm, kind, and knowledgeable group. I fund I got so much help and support from everybody here. I know it is extremely difficult to realize what happen to you and what you are going to go through.

To answer your wonder, I am not sure what is 'use nerve sparing radical retropubic prostatectomy ' as what difference between regular Da vinci surgery. what are the after effects of this surgery?

Well keep pray for you!

Jennifer

Andiesdad
Posts: 5
Joined: Sep 2009

Thank you for your comments, and thank you for being a rock in your husbands life. from what i understand (they may be the same surgeries, just called different names. can anyone else out there help?) the surgery that i mentioned is done by a robot that the doctor controls, as the doctor is doing the surgery, if he can spare some (hopefully most)of the nerves that control erections he does so with these robotic arms, then hopefully later on post-op there may be less chance of your husband suffering from ED. again if there are more comment from others who have already undergone this surgery. please correct me or add on to what i've just said. thanks

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

the side effect of the surgery is pretty comment. I hope everyone who have that surgery will not have much side effect. I understand how important 'the quality of life' is. However, one got have to have 'life' first, then able to work on 'quality'. I don't know if my husband is agree with me or not but i told him now worry about it much now. the important thing is find a experienced surgeon to get minimize side effect.

I do believe Larry and Sonny are having good experience on how to deal those side effect. both of them are on the trip and will return soon. I am sure they would be happy to offer you their opinion.

best wish for you.

Jennifer

SubicSquid
Posts: 11
Joined: Aug 2009

AndiesDad, Our cases are similar. I am 63 years old, my PSA was 5.6 and my Gleason 8 (3+5,confined to the left side of the prostate.). I was diagnosed in July, but recovery from a severe E-coli infection/prostatitis from the biopsy has delayed my surgery. My nuclear bone scan and MRI were negative for spread. My extra problem is that I have a really fat gut. My urologist has scheduled me for an open prostatectomy on October 22 because he feels more confident doing my case that way because surgery on obese men is much more difficult. Fortunately, he has referred me for a consult with a very experienced DaVinci surgeon on Tuesday who wants to see if he will be able to do DaVinci surgery on me. I hope that he will. Either way, our cases seem similar so I will keep this site informed as my treatment progresses. If I have the open surgery, I will be one of the few currently on this site not to have robotic. It will be interesting to see how differnt the recovery might be. The good outcomes I have been reading about here make me feel optomistic that things will be alright. Hang in there and stay optomistic.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Hey Andiesdad,

My name is Sonny and I was where you are not quite 3 months ago. In that time I have done my research (that's how I found this forum)made my decision and had my surgery. This is a brief synopsis of my travel down the PCa path.

I had my surgery on Thursday Sept. 17th at 10am. I was in my hospital room about 4pm and walking around the hospital corridors by 7pm. I was discharged the next day around 3pm and went to the apartment I had on the hospital campus. I walked 4 times a day every day and totally probably walked about 3 miles per day. I had only mild discomfort and not once during the week that I was there did I feel the need for any kind of pain meds.

My catheter was removed on Wed. the 23rd and I flew home to Orlando from Detroit yesterday afternoon. My recovery may not be typical, I have talked to many guys who didn't have it as easy I. I think a large part of the success is dependent on the Dr.'s skill and on how much you do before the surgery to prepare.

I walked more the days before the surgery, lost a few pounds and began eating the recommended post-surgery diet 10 days before the surgery. The diet is all about getting you digestive system on track. Gas, bloating, constipation, all of that can be avoided by eating correctly for the effects that the surgery will have on your body.

I started doing the Kegel exercises about a month before the surgery to build the muscles. My cath was removed at 9am and I have not had a drop, drip, leak or anything since. Unlike some others, I haven't even had a leak when sneezing or coughing. I consider myself very fortunate with my recovery.

My nerves were spared on both sides. You Dr. may find he can spare both once he gets in there. They never know for sure until the can actually see whats going on.

I don't have any experience the ED Rehab yet, my surgery was only 8 days ago. I am not supposed to start the rehab plan for 2 weeks.

This was short, sweet and to the point. There is nothing about the process I would change and there is nothing about the decision I regret. You will find that once you have made the decision and put the details and plan in place, a serene peace and calm will wash over you. You will feel comfortable and confident knowing that you have done all you can and now it is out of your hands.

This is a very supportive and encouraging group here, you should know that many will be saying prayers and blessings for you and your family and in fact they have already started.

Bless you and your family,

Sonny

Bill91101
Posts: 34
Joined: Apr 2009

Hi Jennifer and husband (welcome to the no-fun club)

I am 55 yo also. (well, 56 in a couple of weeks!)

I was diagnosed in April: PSA = 89, Gleason = 3+4. No bone cancer, no cancer in any other organs.

Surgery was not an option (evidence seemed to indicate that the cancer had gone beyond the prostate- I had a neighboring lymph node that was irritated, chemo wasn't considered.)

I started IMRT treatments in June. IMRT is Intensity Modulated Radiation Therapy. 42 treatments at 15 minutes apiece. Only side effect was some diarrhea (tg for spell check), and pain urinating. That's all gone.

I began Degarelix treatments in June, also. Degarelix knocks out the testosterone and starves the cancer. (lack of testosterone is a bummer- but is isn't forever, and it beats the alternative)

My latest PSA number was 0.5. Prostate is down to 'normal' size. My lymph gland is no longer swollen.

I am working full time (and more = groan)

My Urologist says 'we're winning the battle'.

I'm a staunch advocate of pomegranate juice, tomatoes, salsa, organic whole foods, meditation, prayer and 10,000 steps a day. Laughing at yourself helps, too.

My dad had PC 13 years ago. He got proton beamed. That's all. No surgery, nothing. His PSA has been below 0.5 since. He turns 90 next March. We had a good laugh on the phone about my initial predicament and the outcome (not sure why it was so funny, but we laughed)

There is a lot of great information supplied by people on this board. I hope this helps.

Stay strong and VISUALIZE winning.

Bill

JohnDa
Posts: 3
Joined: Sep 2009

Hi Jennifer, I was diagnosed in July. My PSA was 5.4 with a Gleason score of 6 (12 biopsies with three showing cancer) A great book to read is Bob Marckini's "You can beat prostate cancer". He explains most all treatment modalities and the pros and cons of each. He was in the same boat that your husband and I are in but you can save a lot of time and benefit from his research. He talked to 200 patients and doctors who specialize in each treatment modality. He goes to in depth discussions on PSA, Gleason scores, patient results, insurance, etc. I'm still debating treatment approach but based on my scores and talking personally to patients all over the country, I have narrowed down my choices to Proton Therapy and a "Wait and see with monitoring" approach. I'm continuing my research but hope to make a decision by the end of this week. As far as food is concerned, I've seen Broccoli, and tomatoes recommended (Bob 's book also covers a diet). I am also taking pomegranate extract in pill form. It's a lot cheaper than the juice and doesn't contain the sugar. Don't let your urologist talk you into any specific method . They can be very biased towards their specialty. Do your own due diligence. Remember, after treatment , it's the quality of life that counts. If I can be of any further help, please contact me. John

qjenxu's picture
qjenxu
Posts: 19
Joined: Sep 2009

thanks Bill91101and JohnDa for your kind words and encouragement. My husband and I are deeply appropriate everyone's help and pray and support. I will looking through all the opinion and suggestion your provided. your advises are opened my eyes. I printed every post out so i can read them as I need anytime.

Wednesday we will see our urologist to find out if the cancer is spread or not.

JohnDa, with you good luck and the best for your decision.

Jennifer

JohnW7WZ
Posts: 1
Joined: Sep 2010

Hello Jennifer,

"You Can Beat Prostate Cancer and You Don't Need Surgery to Do It", by Robert J. Marckini

Please obtain this book and read it completely asap and encourage your busy husband to do the same. While you are an Angel to do the research for him, this is one of the most important decisions he will ever make. It is normal to avoid it, deny it and put it off. This book will change his perspective, give you both hope and return a sense of control to your lives after the shocking diagnosis.

I was diagnosed in August 2009 at the age of 58. No symptoms, just a blood test from a physical exam, PSA 11 and Gleason (3+4). I was blessed to catch this early as well. My treatment choice was Proton Beam radiation at the UFPTI in Jacksonville, FL. This was completed in February 2010. Post treatment I have no symptoms, no side effects and absolutely no change in my daily routines. Everything works for me just as it did before the diagnosis. My PSA is already down to 3.6 and falling.

Read the book, take a deep breath and if your husband has any questions, he is welcome to email or call me by phone. You are welcome to contact me as well, but he needs to engage!

Hang in there, John

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

John,

Welcome to the forum. Many men here would benefit from your insights and experiences with proton beam treatment.

I strongly suggest that you open a new thread to better able to share your background and knowledge. You tagged onto an old thread here that was started back in 2009. A new thread oriented toward this treatment option would, I am sure, generate a lot of discussion.

Glad your choices are working well for you.

===========================
Age at Dx: 59. PSA was 4.3 which dropped to 2.8 after eliminating dairy. 1 of 12 cores positive with 15% involvement. Gleason 3+3=6. Stage T1c. DRE normal and there were no physical symptoms or history of PCa in family.

Treatment: SBRT with CyberKnife in June 2010. Side effects: None

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