Just diagnosed and a bit scared. - Prostate Cancer N...

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Just diagnosed and a bit scared.

rf3rf3
rf3rf3

Just diagnosed in Feb of this year. Only 50. But dad had it and i am African American—-so risk is there. Gleason a mix of 3+3 and 3+4. Lots of cores with cancer but all localized and i’m Told very low risk of aggressive cancer. Just got engaged , trying to have kids, etc.. and so afraid of side effects of surgery. I’ve met with 6 NYC/NJ docs...surgeons, radiation oncologists, urologists, proton beam docs, etc... Think I will choose between Cyberknife (NY Winthrop) and HIFU (NYU Langone). Any thoughts? Would love and appreciate any feedback.

28 Replies
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Darryl
DarrylAdministrator

Hi. Totally understand your fears and concerns. Before you jump into a treatment, please have a second opinion on your biopsy slides. Info for that is here: malecare.org/second-opinion...

Also, attend an in person support group. The best in NYC shows it’s schedule here: malecare.org/nyc

And start looking at sperm banking, for those kids you wish to have

Burnett1948
Burnett1948 in reply to Darryl

Burnett1948.rf3rf3 Don't do what I did and rush into a treatment.I had a 3+4 Gleeson upgraded from 3+3 Gleeson in 2005. I didn't thoroughly check out all aspects including surgeons and best treatment and I didn't understand I had time to do so. I heard the word cancer and I freaked out. I now understand that Prostate Cancer isn't as fast growing as other cancers. I now have recurring Prostate Cancer after Surgery in 2005 and Radiation in 2009. Best wishes.

Hi rf3rf3, you have time. DO NOT RUSH. Seek other opinions, read, study, ask questions.

Remember, surgeons want surgery, radiation docs want to irradiate, all doctors think their solutions is the 'perfect answer' to your situation. This cancer forces YOU to chose your path. Learn as much as you can, sort out the chaff and find doctors you feel comfortable with and can TRUST. Talk to people, as Darryl suggested, go to some support groups and ask questions. There are thousands of sites on the internet, stay with the 'brand name' ones. Joescancercures.com isn't a brand name site. :) Take a deep breath, relax (as much as you can) and involve your fiance in the information gathering and discussion phase. This may be a long term relationship (the cancer and your fiance) so get her involved.

61, Gleason 9 (5+4, 4+5, 4+5, 5+4, 5+4, 4+4), Grade 5, all 6 cores +. Make sure your relationship will last. Care givers have a long road ahead of them and it is bumpy. Get her involved.

May God bless you and your journey be smooth.

rf3rf3
rf3rf3 in reply to no5ole

Thanks for the support and guidance. You are right...finding the doc you can feel deep trust with is hard because they all have 'the' answer.

Hidden
Hidden

Hi as someone who was also diagnosed in Feb. Although I am not African American and 68, I share both your family history and Gleason scores. The most baffling thing for me is the decision making process on treatment and you need to take your time. A good book to read is Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. He is one of the best prostate surgeons at John Hopkins. This might be a good place for you to have a consult. They are one of the best in the country. At your age surgery is a good option if you can find someone like Dr. Walsh who is experienced, does 40-50 surgeries a year and is successful with nerve saving techniques. Here is a link to a good decision aid from HHS Agency for Health Care and Quality. You can print the report and take it with you as a guide for discussions with doctors; effectivehealthcare.ahrq.go... Also I am finding that work and hobbies are a good thing to distract myself from constantly researching and worrying. Best wishes!

rf3rf3
rf3rf3 in reply to Hidden

Yes...great ideas! Surgery is a decent option but so surgeon and anatomy dependent. I do need more hobbies to distract me from all the research I'm doing. Thanks!

Take your time and research. Freeze your sperm if you desire kids because no matter what treatment you do, you won't be able to. I did Proton Beam therapy and had a reoccurance and just did HIFU with great success. If I could do it over HIFU probably would be my first choice. Surgery for me was never an option. The choice is yours and you have time.

Hi, was in a similar situation to you 18 months ago. The concern with prostate cancer is treating the cancer before the cancer penetrates the prostate capsule, (the protective shell/membrane surrounding the prostate gland). Once outside the capsule options go from cure to treatment protocols. The Oncologists I consulted with became concerned as my Gleason scores were a mix of 3-4 and 4-3, with my Father also having prostate cancer and a number of cores showing cancerous cells. Similarly I was 52 when I opted for treatment.

The previous suggestion to store sperm cells should be well heeded if you are looking to have children. All treatments have some probability of risk to male performance as a reality. After talking with my wife, weighing all treatment options, and reading through many, many articles in this forum we decided on robot-assisted radical prostatectomy, (Davinci surgery). For me, radiation and surgery were both viable options with excellent promised outcomes. The difference was that a second follow-up procedure had a small likelihood of occurring and having surgery performed first allowed follow-up with radiation whereas treatment first with radiation did not allow viable follow-up treatment options.

You are young and have many options to consider, which can seem daunting. Keep track of how slow or fast your cancer is growing and make an informed decision that is right for you.

Get well soon!

Chris

rf3rf3
rf3rf3 in reply to azcanuck

Thanks,Chris! How were the side effects from surgery, if you don't mind me asking?

azcanuck
azcanuck in reply to rf3rf3

My urinary incontinence lasted about 4 months. Kegels prior to treatment were recommended and likely helped, (also post surgery kegels). I still get a bit of leakage when lifting heavy objects. I was fortunate that my surgeon was able to spare both nerve bundles, which has helped prevent erectile dysfunction. My ability to maintain an erection is not the same, at times I experience leakage during sex and orgasms are hit and miss. I have an understanding wife which is key and we are finding ways to keep our flame alive.

I spent a significant amount of time finding a surgeon with extensive experience in robotic surgery. A common thread in most prostate cancer forums seems to be that there is a link between better outcomes, post treatment, and amount of experience of the physician, (and if you can find physicians that are always looking to improve and learn who have significant experience...). I am very fortunate my side effects were limited. This forum has a number of members who are able to articulate their post treatment side effects and their strategies and options to meet their challenges.

Radiation treatment has some notable differences in terms of side effects. Any decent doctor will be able to delineate all effects and likelihoods of them happening, and whether they will be transient or permanent. In general, the less invasive the prostate cancer the better the recovery will be.

There is a lot of information to deal with, but also a lot of help and support for you as well.

Best wishes on a full recovery...

rf3rf3
rf3rf3 in reply to azcanuck

Thanks so much for your help,azcanuk.!

spm58
spm58 in reply to rf3rf3

Hello, I was diagnosed last March 2017. Gleason ranged from 7-9’s. All cores were cancerous. They thought it was all contained from ct scan and mri. It was found to be in colon but able to remove parts and get clean margins. They also found small amount spread into my lymph. This was all discovered during radical prostatectomy da Vinci robotics. I followed with radiation treatments for two months. With surgery, leakage was issue. Kegel did not help so referred me to a urinary? Physical therapist. Within a week I was 80 percent better. Within a month I was 100 percent again. The type of exercises were what made a difference. My PT said kegel could prevent improvement and needed to do more yet simple exercises relating to daily natural movements( ladder, steps, sitting and standing, twisting etc..)

My radiation was a piece of cake with hardly any side effects. Hope this helps! God Bless You- scott

rf3rf3, to be honest, the other 2 replies scare me. I was diagnosed at age 52, am now 77 and cancer free. I was advised by my general doc and my urologist to have radical surgery, which I did, followed by 35 radiation treatments when PSA rose after a year, followed by hormonal treatment (testicles removed) a year followed the radiation which finally cured me. I have been a facilitator for our local PCa Support Group for over 20 years and unfortunately I have seen more than a few members and others who decided to "watch and wait" to see what happens ( medical jargon for watch and waiting to see what happens, or basically doing nothing) The least thing you should do is "Active Surveillance) which means being followed by your urologist on a schedule. In far too many cases I have unfortunately seen and heard men AND their docs say "if we had known then what we know now, we should have been more aggressive." Once the cancer is out of the gland capsule, it's a whole different and more deadly disease. Good luck.

rf3rf3
rf3rf3 in reply to ng27868168

Yea....I kind of ruled out active surveillance based on all the doc feedback.. Just hoping I can take a couple months to decide. Thanks again. Much appreciated.

Hidden
Hidden in reply to rf3rf3

One thing I didn't mention is having a Prolaris test prolaris.com/prolaris-for-p... This is reimbursable from insurance and will let you know how agressive your cancer cells are. I am still waiting for my results. They sent the biopsy off to the lab. It is pretty neat and good clinical trials on the testing. You will get a score from 0 to 5 with more detailed information. It is totally interesting the rush physicians have after no PSA testing of me for 6 years. My urologist who I saw every 6 months never did a PSA for me since 2012, yet tells me it is the only reliable test for prostate cancer. The local hospital radiation oncologist wanted to give me hormone shots the day of my consult. After I told him I was getting other consults he said "well I guess you can kick the can down the road, it is only prostate cancer." All I can say is get as much information as you can. If 2 months makes a difference after all this time, that is just the way it is. Best of luck! Andy

rf3rf3
rf3rf3 in reply to Hidden

Thanks,Andy. Hope the Prolaris comes out good!

I was pleased with the results of my HIFU surgery, although I had to pay out of pocket. If your insurance covers it, that's would be very nice -- it was $25K that I paid. I did get a big deduction and a big tax refund the next year so that helped.

rf3rf3
rf3rf3 in reply to WSOPeddie

Wso, did they do both sides of proportion just a focal area

WSOPeddie
WSOPeddie in reply to rf3rf3

The cancer was confined to only one side of the prostate. I was aware of focal treatment and talked to the HIFU surgeon about that. He recommended treating the 'whole gland' to be sure not to leave any of the cancerous tissue behind. That sounded like a good idea and that's what we went with. So far so good, a year and a half later. Best of luck with whatever treatment option you choose.

rf3rf3
rf3rf3 in reply to WSOPeddie

Thanks. I have one doc at nyu that says he can do full ablation of my prostate since I have it in both sides. Another doc at Sloan Kettering says doing HIFU on full prostate might lead to worse side effects than radiation. How are your side effects?

WSOPeddie
WSOPeddie in reply to rf3rf3

I didn't have any bad side effects. An experienced HIFU surgeon should be able to spare the nerves related to incontinence or ED problems. Don't be shy about asking how much experience the doctor has with the treatment you have in mind.

Thanks....side effects? Did they do whole prostate or one side?

rf3f3..., not sure if you are asking ME about side effects, but I had my whole prostate removed in 1992 with open radical surgery (8" incision) and catheter in for 14 days! Much improved surgery procedures these days. :)

rf3rf3
rf3rf3 in reply to ng27868168

How is the psa?

ng27868168
ng27868168 in reply to rf3rf3

PSA at .002 last checkup.

Hidden
Hidden

lots of trials for newly diagnosed cases.

You might check it out, if only to get a sense of what is being thought about these days.

clinicaltrials.gov/ct2/resu...

This is a search on that "keyword", so the trials may or may not be for your people in your situation.

So....tomorrow is the big day. I have opted for HIFU at NYU Langone with Dr.Taneja. After being diagnosed in early Feb, i tool a LOT of time and investigated almost everything out there. Because I work in Pharma i get access to almost all the scientific literature out there which helps.

In the end, I did not choose prostatectomy because of the side effects. As a 50yr old, recently engaged , and healthy guy i am just not ready to suffer through a year or so of ED and incontinence. Proton beam would have meant about 5 weeks of disruption to my work . Active surveillance for a Gleason 7 African American was strongly not recommended by every doc i spoke to. Cyberknife was close second—for effectiveness and because it would be covered by insurance. HIFU is a bit of a gamble—there is a 20% recurrence rate apparently—but i am hoping to buy myself a few years (at $25k) before i need radiation or surgery.

Anyway—wish me luck.

davey1957
davey1957 in reply to rf3rf3

Wishing you all the best with your procedure. Xoxo

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