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Please help...Husband recently diagnosed

The wife
Posts: 2
Joined: Jul 2010

Hi! My husband was diagnosed with prostate cancer 1 week ago today. His Dr. on Long Island sent us into NYC for an appt with the Director of Urology at Mt. Sinai Hospital. He gave us so much info our heads are spinning. Here are some of his stats:
PSA= 7.5
Gleason score= 3+4
11 out of 13 core samples were positive
The cancer may have invaded the nerve (which he may or may not be able to save if he does the radical prosatectomy which is his suggestion.)

The Dr. says he is not a candidate for robotic surgery because there is a lot of cancer and he wants to make sure he gets clean borders and take lymph nodes to make sure there is no cancer there. He made it very clear that there is a lot of cancer.

My husband wants to do cyberknife. He's so worried about all of the bad things that come along with surgery.

He is a VERY healthy 57 years old (and very stubborn). Any suggestions would be helpful. Thank you.

The Nev
Posts: 50
Joined: Sep 2009

Hello I'm not to far from your husband’s diagnosis. I was 54 and turned 55 right before my surgery. My stats were
PSA 4.5
Biopsy 10 of 18 cores positive all on the left side
Gleason 3+4=7
I did have robotic surgery, the left side was bulging and so they were not able to save the nerves on that side. They took 8 lymph nodes all clear and my margins were clear. 6 month check up PSA 0

So your doing the right thing information is your friend, there is a lot here and I'm sure others will direct you to other sites books and material. Treatment options vary and you all will have to decide what’s best for you. My main advice would be to get a second opinion, learn all you can make a decision and then go with it. I chose to go to M.D. Anderson in Houston Tx because I felt like they gave me the best chance. I thought no matter how it comes out I gave myself the best possible chance and so I live with that with no regrets. Good luck with your search and your treatment choice.

Villacapra
Posts: 4
Joined: Jul 2010

Hi
I (54) was diagnosed with PC (PSA 20.4, 8/32 cancerous cells in biopsy, Gl. 3-5) in FEB 10. I read tons of info online. Very helpful. Found THIS WEBSITE HERE to be the best source. I saw 4 doctors. All had different recommendations, from wait n see to surgery, and even alternative treatment by mushrooms, chelation and vitamins. Also listened to Dr. Israel Barken's weekly podcasts. Eventually I followed the doctor who showed the keenest interest in my case and who performed BRACHYTHERAPY on me in May 10. Not because I beleived Brachytherapy to be the best (although it qualified as one of the best options beside surgery), but because I liked and trusted THAT PARTICULAR DOCTOR MOST. Beleiving in your doctor is the key. Plus a supporting spouse and family. And I found some changes to lifestyle and nutrition I learned along the way to be most rewarding. Like your husband, I felt good and looked good. Now 1 month after Brachtherapy I feel weaker and have some slight pains and difficulties with urgency and urination, which are supposed to be temporary (3 months). The present is physically the most uncomfortable stage, though it is bearable and I'm still feeling generally well, except for those localized difficulties.
All the best, VC

YTW's picture
YTW
Posts: 63
Joined: Apr 2010

Wife: Number one, DONT PANIC, Take time to research ALL options AND get at least on more opinion. On the Cyberknife website there is a link where you can e-mail three Cyberknife doctors. These fine gentlemen will give you their personal opinions based on the information you give them.Check the link below. Best Wishes.....Jimmy

http://www.cyberknife.com/forum-doctors.aspx

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

Sorry that you're faced with this tough decision process but as others have said, this is a good place to start to gather information. I completed the CyberKnife treatment earlier this week and couldn't have been happier with the process to date but you really need to visit a CyberKnife center in person and discuss the options with the medical team there.

My pathology was different from your husband's in that I had only a single core (of 12) positive, Gleason 3+3=6, a PSA of 4.3, and was staged at T1c. My DRE was normal and had no other symptoms. CyberKnife is optimized for prostate cancer that has been detected early and is contained within the prostate. It may not be appropriate for your husband if there is evidence that the cancer has spread to the surrounding nerves, seminal vesicules, and lymph nodes. An 'ideal' CyberKnife candidate is one who has localized prostate cancer, a Gleason score of <7, a T1/T2 stage, and a PSA <10. I know that many CyberKnife centers will treat patients with intermediate cancers but you need to talk to them in person. I found them quite open and informative while I was doing my research. For more aggressive prostate cancers, there are probably more appropriate treatments that you should consider but only a doctor can advise you on which type of cancer your husband has...and be prepared for differing opinions on that from different doctors! Also, keep in mind that when you visit urologists who are mostly surgeons, over 90 percent of them will recommend surgery. When you visit a radiologist, they are going to recommend radiation. An oncologist could go either way. Make sure you get opinions from all of them.

As was pointed out in another post here, www.cyberknife.com is a good place to get information about Cyberknife and it maintains an excellent patient forum which is moderated by physicans who practice the CyberKnife procedure for prostate cancer and are some of the most recognized experts in this field of radiation. That might be a good place to start.

I have posted a blog (double click my name here and it will take you to my CSN space where you can read Kongo's blog) where I tried to describe the process I went through from diagnosis through treatment with Cyberknife, the doctors, the pros and cons (as I saw them) of the different treatment options, and how I finally made a decision.

Another thing I would do if you haven't already started is to gather all of your husband's medical records in one place -- biopys report, history of PSAs, all the medications he takes, any other medical conditions, insurance information, and so forth. I made several copies of this information so I could quickly provide them to the doctors I visited for second opinions.

Good luck to you and your husband.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

The wife: Sorry to hear about your husbands cancer but you are among friends here! The information overload can be unreal! The good news is you have found the cancer and can get treated! My dad is a 13 year Prostate cancer survivor and I'm a 10 month Prostate Cancer survivor!

I'm not sure if your husband would be a good candidate for cyberknife at the Gleason 7.
I'm sure you will be hearing from KONGO on the forum soon. He just finished up cyberknife and I believe it is best for Gleason 6.

Just remember that each specialist will push their speciality so do your homework by reading and listening and asking questions.

A couple excellent books that you can get from amazon are:
1 Dr. Patrick Walsh's Guide to Surviving Prostate Cancer
2 Saving Your Sex Life: A Guide for Men with Prostate Cancer Dr. John Mulhall

Dr. Mulhall is in NYC and Dr. Walsh at John Hopkins in Baltimore I believe.

Its normal to be afraid of the things associated with surgery but with a VERY SKILLED SURGEON your husband should do fine.

I am pad free and getting erections with Levitra and that is with the Doctor sparing 100% of the nerve bundle on one side and in his estimate 60% on the other side.

Let us know how we can help and you will find everyone on the forum loves to help. We are not doctors, just other men, woman, wifes, daughters, sons, etc that have been impacted by prostate cancer.

If your husband or you want to talk just let us know.

Larry Age 55
PSA Pre surgery 5.3
Gleason Pre surgery 4+3 (7)
Gleason Post surgery 3+4 (7)
Davinci surgery Aug. 2009
Current PSA 0

The wife
Posts: 2
Joined: Jul 2010

I can't thank you all enough. My sister sent me the link to this website two days ago and just from reading the posts, I had a much better understanding of what the doc was telling me. We are definitely going to get 2 more opinions. It's such a big decision and you definitely don't want to make the wrong one!
The one thind I didn' ask the doc is what happens if he can't spare the nerve? My husband seems to think his sex life would be over. That's why he doesn't want to do the surgery. I will ask the second opinion doc.
Thank you again so much for all of your help! We REALLY appreciate it!

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

Wife, there are two nerve bundles that surround the prostate... one on the left side and the other on the right. If one of the nerve bundles can be spared, your husband may eventually recover his ability to get erections, although they may achieve different angles than he had previously. If both bundles have to be taken, the liklihood of ever recovering sexual function is poor. I have read about a nerve transplant procedure where they take nerves from the ankle and reattach them where the prostate used to be but you would need to seek some more expert advice about that. Another side effect of surgery is that there will no longer be any ejaculate at the time of orgasm as the prostate is the organ that makes the ejaculate the carries the sperm. However, many men seem to think that these dry orgasms, while different, can be just as intense as before. I'm sure others who have had this procedure will let you know on this forum their experiences.

One thing about prostate cancer...there is a possibility that whatever course of treatment you pursue will cause a decrease in sexual potency afterward. With radiation, the nerves are generally spared and if there is a decline in the ability to achieve erections, it is usually well treated with drugs like viagra or cialis. Without nerves, I'm not sure ther drugs will do much good although some men have achieved some degree of sexual function through penile injections, pumps, or penile implants. If you peruse the past posts on this forum you will find many discussions about these alternatives.

Another surgical side effect is incontinence and most men who have surgery report some degree of urinary incontinence after surgery. For most men, continence gradually returns during recovery and over 90% of men regain complete control of their urinary functions by two years after surgery, most achieve it much sooner. There is a small percentage of men who never regain continence.

One other thing about surgery is that there is an apparent shrinkage of the penis after the operation. When the prostate is removed, the urethra (which passes through the center of the prostate) is removed as well and the surgeon must reconnect the urethra from the base of the penis to the bladder, which has the effect of drawing the penis up into the cavity where the prostate used to be. Exercise and taking drugs like viagra and cialis which increase blood flow to the penis help mitigate this effect and often the bladder gradually adjusts its position but many men have reported that they end up losing about an inch.

When you research statistics about side effects, be sure you ask about specific standards that are being graded. For example, many of the studies reporting the return of sexual function after surgical or radiation procedures define restoration of function as the ability to achieve an erection sufficient for penetration at least once a month. To me, that doesn't sound like a restoration of sexual potency but depending on a man's age and prior sexual function, that may be just fine. Younger men, such as your husband, may have a contrary view of what sexual function means so make sure you get very, very specific when your discuss the potential side effects with the doctors.

If your husband eventually decides to undergo surgery, be sure you find as experienced a surgeon as you can get in either open or robotic procedures. For robotic surgery, most men who post here will encourage you to find one who has completed hundreds of procedures. A study I read recently showed that most surgeons using robot assisted surgery have done fewer than 50 procedures. Urologists who perform open RP freqently perform fewer than 10 a year. If I was being operated on, I would go out of my way to find the best and most experienced surgeon available, even if it meant I had to travel to get to them.

Many men who post on this forum have had excellent results from surgery and I think most would tell you that their pre-treatment physical condition, body mass index, exercise routine, and so forth helped their recovery but the most important aspect of their success was taking the time to research the pros and cons and picking the best surgeon they could find. With a good surgeon the liklihood of recovering sexual potencey and continence within several months of the operation is extremely high.

With radiation, men frequently experience urination issues shortly after their treatment but the issues go away within a few months or are treated with drugs like Flomax. In my case, I haven't experienced any urinary issues except for one afternoon of feeling an urge to urinate more frequently than normal. Depending on the type of radiation, some men may experience a decline in sexual function two or three years following their radiation treatment. If this occurs, drugs like viagra or cialis are highly successful in restoring potency.

Other forms of radiation besides Cyberknife include brachytherapy where relatively low dosage radioactive seeds are implanted in the prostate. HDR brachytherapy is a similar approach but involves the insertion and removal of tiny radioactive rods into the prostate to get the same dosage. (CyberKnife emulates the dosage supplied in HDR brachytherapy). XBRT and IMRT are different forms of photon radiation that treat the prostate in a regimen that takes about 47 or more days while the radiation is delivered in small fractions each day.

There is also proton radiation which uses protons instead of photons (protons have mass...photons don't).

There's also cryotherapy where the prostate is frozen and thawed to kill the cancer (it can also kill the ever important nerve bundles), HIFU which is a high frequency ultrasound technique not yet approved by the FDA but available offshore and many have tried this procedure with good results although its costs must be out of pocket.

There's a lot to learn but you're on the right track.

steckley
Posts: 100
Joined: Aug 2009

Here's a link to an excellent video presentation whose viewing should be required of all new arrivals seeking options for PCa treatment. A video presentation titled "Sexual Problems in the Male Cancer Patient", concerning Erectile Dysfunction by Dr. John Mulhall of Memorial Sloan Kettering and author of the book "Saving Your Sex Life." Consisting of 4 parts, total time of about an hour and a half, it contains an address to a PCa Cancer Patient group and contains of of the most through and up to date information available. Well worth the time for anyone who is contemplating their method of treatment after a PCa diagnosis.

www.mskcc.org/mskcc/html/94910.cfm

griff 1
Posts: 114
Joined: Jun 2010

just read and read and read these posts, there are some awsome guys on this site and i have been helped alot with all the info. sounds like your husband is lucky to have a great wife to stand by him. good luck. griff

griff 1
Posts: 114
Joined: Jun 2010

just make sure your dr. has done alot of the procedure and good luck. griff

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

As you do your research you will find success as well as failure with just about every type of treatment. Once you have determined what treatment path you will follow to terminate the beast the one real piece of advise I feel is best to give is put most of your energy into finding what you believe to be the best possible person for that treatment choice. Reason: you only get one "first try" to solve the problem and any second try will be just that...a second try. My path is well documented here and was and is to date still very successful. If you have any particular questions I would be happy to help.

Randy "cancer survivor" In Indy

Trew
Posts: 891
Joined: Jan 2010

When I was at Loma Linda U for radiation and proton treatments the head of the nuclear Oncology dept told me the weakness od Devinci was the very small sampling of lymph nodes they can take. I wonder what a proton center would tell you RE treatment?

chitown
Posts: 90
Joined: Mar 2010

I was diagnosed in March and went through a similar process, that others probably go through as well. The first is denial where the mind goes crazy and finds latent sanity in denial and in looking for a illogical solution that will change the current situation. Next is anger, when denial does not work. Crying and 'why me' kicks in. In negotiation phase mind tries to separate 'rotten' from 'bad' and is willing to remove the rotten and accept the bad - if rotten goes away. This is where getting rid of cancer and accepting sexual problem is acceptable in exchange for a long healthy life. The next phase is acceptance where the mind accepts that life will change and finds that with support from medical community, technology, friends and family - it will be ok! Only after this the mind can make and feed good about the decision made.

We are all humans and have sometime type of deliberations to go through. With friend, family and well wisher the process can be shorter and less painful

Hope this helps.
P.S. I am 2 weeks past davinci surgery, back to work and doing very well - physically and mentally

zakpaga
Posts: 66
Joined: Jan 2010

The Wife

Sorry to hear that your husband has been diagnosed with PCa. But you have come to the right place by joining this forum where you will get excellent advice as you have already seen.

I got my surgery a little more than three months ago with Dr.Samadi from Mount sinai Hospital in NYC. I was 52 yrs old when diagnosed in January and 53 years old since yesterday. My PSA was 4.7 and Gleason 4+3, which was downgraded to 3+4 after the surgery.

I am just curious to know which doctor you saw at Mount Sinai Hospital. Dr. Samadi was able to save 100 per cent of both my bundle nerves and I am able since a week to have erection hard enough for penetration (excuse my vocabulary) with only 10 mg of Cialis. I was 98 per cent continent at catheter removal and just worn 1 pad for a week for security. If Dr. Samadi is the one who said that your husband is not a candidate for robotic surgery, you better believe him because he is one the best robotic surgeons in NYC with Dr. Ash Tewari from Corneill Hospital.

The fact that I am able 100 continent today and fast recovering from ED is due to the experience of my surgeon, plus my age.

But, before making a decision on the type of treatment, you need your husband to have a whole bone scan, CT scan of the pelvis and MRI of the prostate to make sure that the cancer did not spread to nearby organs.

I know that it could be overwhelming and I have to commend the wives on this forum who are so supportive of their husbands to take the lead in information gathering. You are doing a marvelous job.

Keep reading the books recommended by members of this forum, look for second, third opinions from other surgeons, oncologists and cyberknife doctors and you will be ok.

I wish you good luck.

Victor

bdhilton
Posts: 752
Joined: Jan 2010

I am 17 weeks out from surgery. Your husband sounds like my biopsy except I was 4+3 . I had my surgery done out of Northwestern (Chicago) by Dr. Catalona (one of the best in the world and will be retiring at some time in the near future). I was dry from day one and I am recovering nicely with my ED issues….I live in Atlanta and that where my urologist surgeon sent me…
Lots of choices to make in a short time…Your life for sure will change but I believe my life has changed for the best… I read and see many women posting for their husbands but from my perspective your husband should be taking the “reins” on this process and face his demons..but to each their own…The last thing I wanted was surgery but that is what I ended up selecting….Not an easy process and none of the treatments are magically or without side effects so make an educated and wise decisions…
Best to you and your husband in this journey

mrspjd
Posts: 688
Joined: Apr 2010

Wife,
From one woman to another, sorry to hear of your husband's recent diagnosis (dx). Although this is a scary time, the more you know and educate yourself, the better you will be able to make informed intelligent decisions with your husband. My husband was dx in Feb 2010 with very similar stats, although his PSA was only 2.8, 9/12 cores were positive, many at 100%, gleason of 3+4=7 and PNI. After a second opinion on his biopsy slides, and add'l testing, his PCa was staged at T3c and termed "locally advanced" because it was outside the capsule in the rt seminal vesicle and high volume. I won't go into details here since you can read my posts by doing a search of my user name on the PCa board. If you have any questions, be sure to post them and I will be happy to answer, as will others here.

As usual, Kongo has posted some great educational info, logical and well-thought out and easy to understand. Most of the gentlemen and the few women posting here are very supportive and will give you some excellent info, but you must take the time to read through several pages of posts, and you must do your own homework, because no two cases of PCa are the same. What (treatment choice) may have worked for one man, may not be right or work for another. There are no easy answers.

Unfortunately, there are a few guys who post on this discussion board who don't take too kindly to women posting here, saying that their husband should be doing the posting himself. You will quickly come to know who those posters are and, although they may be well-intentioned, it's best to just ignore their discouraging remarks. What they fail to understand is that this whole PCa diagnosis/subject is and should be approached as a team effort (husband & wife or S.O.) and while we (women--wives, mothers, sisters, daughters) are on this and other sites posting our experiences, asking questions, educating ourselves, then sharing the info with our husbands, our wonderful smart husbands are busy reseaching other PCa websites, reading the scientific studies & literature, attending face-to-face PCa support groups, etc. Coupled with our own research, it can only add to the quality of our posts. I think we can agree that two people doing the research together, asking questions, becoming educated about PCa & sharing info are certainly better than one...there is alot to learn.

Best to you and your husband.
Sincerely,
mrs pjd

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Didn't really have anything worthwhile to add, just wanted to say that I too offer my support to another woman going thru this journey with her hubby. Keep us posted on what you two decide. Best wishes, Maria

BRONX52
Posts: 156
Joined: Apr 2010

VERY GOOD ADVICE !! IT IS A TEAM EFFORT AND ALTHOUGH MY WIFE DOESN'T POST ON THIS WEBSITE SHE HAS DEFINITELY BEEN AN INTEGRAL PART OF THE RESEARCH AND DECISION MAKING. IT IS MUCH EASIER TO FIGHT THIS BEAST KNOWING THAT YOU HAVE YOUR SIGNIFICANT OTHER BY YOUR SIDE !!

ob66
Posts: 214
Joined: Apr 2010

What a great post and great support you are. From the get-go my wife let me know that when "I have Cancer, We have Cancer". She has been nothing but wonderful, albeit scared. Probably reads more than I do on prostate cancer, which is volumes. She is there for whatever I need whether it be support with appointments, help at home, and total unconditional love. I can't imagine going this without her. Hopefully your help to "Wife" is as supporting to her as it seemed to me. I have been through daVinci surgery (June 2009), AUS surgery (May 2010) and now am 15 days into radiation therapy. And with all that I am doing well, feeling very positive and am emanantly helped by the support system about me---wife, kids, grandkids, and friends. My values have always centered on family and friends, and their reciprocation is unbelievably helpful.

mrspjd
Posts: 688
Joined: Apr 2010

for Bronx, ob66, Kongo:
Today, when I read your beautiful posts addressed to me I cried (the happy cry, but you knew that!). I shared your thoughts with PJD and we cried together. Thank you for your support. It really means so much to both of us. Your wives & families are lucky to have such caring and thoughtful men in their lives. This is a difficult time for all of us, so glad to know we are there for one another. Thank you again. I wish you all the best.
Sincerely,
mrs pjd

Klemon
Posts: 26
Joined: Jun 2010

Hi there!
from one wife to another.. I feel your panic. My husband was diagnosed 2 weeks ago, after 3 yrs of rising PSA...and 2-3 negative biopsies.. The at PSA 8.2 and a third biopsy in March 10 was 1 core positive- 1% 3+3=6 positive. We were not panicked, knew it was slow and curable and under 7. we decided on DaVinci robotic surgery for cure, after speaking with many people personally, including our own Dr who had it done ( along with both his brothers). sexual function and continance returned in all their cases. We went to the Mayo clinic in Rochester for surgery consult, since they are big time experts and do so many.. upon review of the slides they told us they were only precancerous cells and recc saturation biopsy to confirm. I was devastated when it came back 3+3=6 on the left, 3+4=7 in the middle and 3=4=7 on the right, and 4+4=8 (4 cores) in upper middle right. Base was negative. We were thrown into "agressive" cancer category (8) and had to do bone and CT scans, both along with pelvic MRI of the prostate to ensure it had not spread...thank god all were all negative. We are expecting its confined to the prostate and moved surgery up to July 22. The waiting is excruciating. From the 5 doctors we spoke with , surgery is the gold standard for cure if your life expectency is over 10 years.. for us.. we are willing to take the risk on sexual function if the nerves cannot be spared, because sexual function while extremely important (my husband is a VERY heathy active, fit 63 yr old), longevity of life is more important to us. If you chose to go another route, make sure they are telling you the risks as well, radiation seeds or external also can have some unpleasant side effects. Remember that if you are going to get cancer, this is a good one to get, as cancers go, it is nonagressive, even teh agressive level we have.. they told us is still not like other cancers.

ob66
Posts: 214
Joined: Apr 2010

A man being diagnosed with prostate CA is one bad sentence. To have a wife like you, Klemon, and mrs pjd, is unbelievable. Although you are not my own, I have the support you offer. What a great thing? Your husband is one lucky guy, as am I.....It is still not like other cancers...

142
Posts: 169
Joined: Dec 2009

Klemon,

Do not dismiss a 4+4 Gleason as a "good" cancer - it is very agressive, and you need to treat it as such. There is nothing about PCa that is good.

The fact that scans and bone scans are negative mean that surgery is still an option. Nothing else. If they had been positive, they would not waste the effort of surgery.

After DaVinci, my biopsy Gleason 4+4 has turned into a post-op 4+5 with extra prostatic extensions that required the removal of the nerves as well, followed by IGRT, and serious discussion of hormone therapy - that has torn my life apart and left me at nearly one year later still unsure of what I have to look forward to.

I have a new "normal" at 11 months from original diagnosis, and I have to deal with it if I want to move on. "Good" is a day that I don't use more than 3 pads, and can actually do a days work without bowel spasms. "Good" has become very relative.

I've had other cancer that was "easier" - at least less destructive than this.

Be aware, be understanding, and press the doctors for real expectations. Then verify, validate, and do it all again.

All that aside, your husband needs and certainly appreciates your support, and will much more so, even if he doesn't realize it yet.

My best wishes are with you.

Chasmag
Posts: 1
Joined: Dec 2009

I am little over a year out from surgery and radiation. Your husbands info is almost identical to my case. I was 53 when diagnosed. I decided to have my prostrate removed by full open surgery. Doctor didn't think I was best candidate for the robot or other choices. My thought was I am young enough that recovery now from total removal would be easier then having to have it removed at an older age. Surgery and recovery was a bit rough but I survived it OK and so can your husband. The doctors did a great job and my surgery was at a VA center. After surgery my psa went down the up and had to do the radiation. Now my psa is close to zero and lower every test. Now I am able to get an erection and have normal sex with no aids. The technology today is amazing. Only real shocker I had was dealing with being told the 2nd time I still had the cancer. Take time to evaluate all the choices and decide which way to go is best with your husband. Good luck.

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