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Husband Newly Diagnosed...so much to understand

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Posted 10/8/2012 2:10 AM (GMT 0)
Hi everyone,

Last week we were a normal family; this week we are now starting the journey that is prostate cancer.  First I had to figure out what the prostate was...since I'm the wife.  Here's what we know: my husband is 54 and gets a PSA test every year. This year it came back at a level 5.  Had a biopsy and one of the 12 samples (right base) came back as: prostatic adenocarcinoma, involving approximately 40% of the biopsy core.  In addition, the Gleason was 4,3.  Perineural invasion present (this freaks me out as that sounds bad).  In another sample (right mid) it states Focus of simplified prostatic glands with cytologic atypia identified; favor prostatic adenocarcinoma inolving 5-10% of the biopary tissue volume.  Gleasons grade 3,4.

During the biopsy, the urologist casually noted that my husband had a cyst on his bladder.  After their meeting last week, his office called to schedule a bladder scope for tomorrow.  According to the office, the doctor "forgot" to discuss this with my husband when he was informing him he had cancer.  Okay, now I'm really worried.  Should I be worried that the bladder is involved too?

We are meeting with a RO on Thursday to discuss radiation as an option.  So much to learn and understand, it's overwhelming.  We have young children and we're scared to death.  Any words of wisdom or light shedding on what the above means would be greatly appreciated.  It now looks like my Facebook time will be spend on HealingWell.

Thank you for your input.

 

Posted 10/8/2012 2:19 AM (GMT 0)
hello and welcome, demtap

sorry you needed to find us, but glad you did. i have been here 4 years, and still feel that hw is the best patient to patient support site on the net.

you are in the "scared" stage. good news - completely normal when the dirty word cancer pops into your life. this part will pass in time, as you learn all you can about prostate cancer.

for starters, i would reccomend you buy or borrow a copy of Walsh's book, "Surviving Prostate Cancer". Many feel its a good one volume primer to all things prostate cancer. There are other good books, but this is a good starting book.

second, don't feel pressured or rushed by any of the doctors into making any kind of immediate primary treatment. urologists tend to push surgery, as radiation oncologists will push for radiation, makes sense if you think about it.

please feel free to ask all the questions you need to ask, no such thing as a dumb question.

i was 56 when diagnosed, due only to a fast rising psa number, no other symptons or issues, and like your husband, was diagnosed as a gleason 7.

many will reccomend that you get a second opinion on the biopsy diagnosis, that can often be a good thing, so that you know what degree of prostate cancer he is really dealing with.

wishing only the best for you and your husband, don't be surprised if the fear doesnt turn to anger at some point too, that is a common reaction once the fear subsides.

again, your best tool at this juncture, is education, education, education. really think through all available options, because there is no "reset" button once you undergo a primary treatment for cancer.

we will be here to support you every step of the way.

david in sc
Posted 10/8/2012 2:46 AM (GMT 0)
Hello and welcome demtap. I am also new on this site, but not new to the cancer journey. You will learn a great deal on here. I agree with David though and with all your options now, take your time. Can't tell you not to panic, but try to stop and take a breath. Thoughts for you on your journey ahead.
Posted 10/8/2012 3:23 AM (GMT 0)
Welcome to HW and sorry you had to find us. HW, as you will see, is extremely informative with very compassionate and supportive folks. I am the wife of a husband with advanced Pca and am certainly glad I found HW.

I would try not to worry about the bladder situation as there are many reasons someone could develop a cyst. You will get to understand that this disease is like a roller coaster ride with lots of ups and downs.

It is very important to take your time in deciding your husbands treatment. As David said, educate, educate, educate. I have always been a big believer of second and third opinions and choosing a physician/Oncologist who specializes in prostate cancer.

Good luck to you and your hubby. You will get through this.

Zimac
Posted 10/8/2012 4:36 AM (GMT 0)
Hi Demtap,

Please don't panic. I agree with what David says above. I was 3+4, and PSA 9.4 before surgery, and T3b post-surgery at age 56, and had several other complications (seminal vesicles, lymph node a few years later) and here am doing well 10 years after original treatment (at age 56) and salvage radiation (at age 65).

I know this diagnosis is a shock to you and your husband, but as with many who have it, this disease may not need to become the central focus of your lives. More than ten years after my diagnosis I still take out garbage, walk the dog, and mow the lawn; my wife and I still have occasional disagreements (though less so than in years past), the bills come every month and we pay them... life goes on. I hope you'll be as lucky as we have been. There's no reason to believe you won't be.
Posted 10/8/2012 10:57 AM (GMT 0)
Hi demtap, another wife here. Like Bohemond, been dealing with this for a decade. It's what we call the new normal.
Fear, panic,all that normal but wait until you have information before you before leaping to any condition. Take a deep breath and learn everything you can. This board is so good with its support and information. I truly have felt welcome here with my questions. Ask away, there is no dumb question.
Posted 10/8/2012 11:29 AM (GMT 0)
Welcome to our forum and so sorry you have to be here. You are fortunate to have found this site before decisions will be made about treatments.

I am 62 and was diagnosed last year after many years of PSA testing with a PSA of 5.25. My biopsy came back with 2 positive cores and a Gleason 7 (3+4) I did my research and chose to have a Davinci RP and so far it looks like I got  my cancer early.  I also knew very little about my prostate, cancer and what to do about cancer. My URO gave me a copy of Dr Patrick Walsh's book "Surviving Prostate Cancer" to read before we had our first post biopsy consultation. This book is considered to be one of the best dealing with prostate cancer. It can be bought online from Amazon and is in most public libraries. If you and your husband can get a copy it covers a lot of information you should know before you meet with your URO.  Good luck and remember this beast can be beat and sit back take a deep breath and do not rush into anything until you have done all of your research. PC is mostly a slow growing cancer and taking a few extra days or weeks to make decisions will not have any adverse effects on the outcomes.

Terry The Water Guy

Posted 10/8/2012 11:31 AM (GMT 0)
Hi demtap and welcome! I am new here too although I've been lurking for MONTHS! I agree with zimac...don't focus on the bladder cyst. Cysts come and go in all of us all the time and we don't even know it. But yes it is good to get it checked.

My hubby was diagnosed in April. I know EXACTLY what you are feeling. As Bohemond said: 'This is your new normal'..You will get there. Once things sink in and you do your research (read read read!!) you will come to terms with your situation. This is not a death sentence and don't look at it that way, although I know it's hard not to with the "C" word. Look at it as something to be managed and incorporated into your lives. I feel for you and your husband but be thankful they found it. Hubby had surgery in May and you never would know it now..He is feeling great and is back to heavy working on a daily basis. He works 12 hour days and is no slouch. As a matter of fact he was back to work (sitting at the desk mind you!) 5 days after the surgery with his catheter still in! There are other options of course and you need to research them all and have long hard talks with your doctor. That is the worst part b/c the decision is up to you. I think a very important factor in all of this is finding docotrs/surgeons/radiologists etc that your really like and trust. Obviously experience is huge. Buy the book that Purgatory suggested. I have a few of them myself and still refer back to them as questions pop up in my head. Knowledge is key.

I am glad you didn't wait so long as I did to join this forum. I went through that scary freaky time on my own yet visited this forum daily. I still do. Keep us posted in your journey and know you can post comfortably here as there are many people who want to help. Everyone who is here has been exactly where you are and totally understands what you are going through. Good luck and tell hubby not to panic!!! (you too!) Take your time. Research. You will get to your 'new normal'..Thinking of you today for sure. The emotions you are feeling now are pretty much the worst part of this whole thing. The mind can make you or break you..Take care :)
Posted 10/8/2012 12:35 PM (GMT 0)

demtap said...
Hi everyone,Last week we were a normal family; this week we are now starting the journey that is prostate cancer. First I had to figure out what the prostate was...since I'm the wife. Here's what we know: my husband is 54 and gets a PSA test every year. This year it came back at a level 5. Had a biopsy and one of the 12 samples (right base) came back as: prostatic adenocarcinoma, involving approximately 40% of the biopsy core. In addition, the Gleason was 4,3. Perineural invasion present (this freaks me out as that sounds bad). In another sample (right mid) it states Focus of simplified prostatic glands with cytologic atypia identified; favor prostatic adenocarcinoma inolving 5-10% of the biopary tissue volume. Gleasons grade 3,4.
During the biopsy, the urologist casually noted that my husband had a cyst on his bladder. After their meeting last week, his office called to schedule a bladder scope for tomorrow. According to the office, the doctor "forgot" to discuss this with my husband when he was informing him he had cancer. Okay, now I'm really worried. Should I be worried that the bladder is involved too?
We are meeting with a RO on Thursday to discuss radiation as an option. So much to learn and understand, it's overwhelming. We have young children and we're scared to death. Any words of wisdom or light shedding on what the above means would be greatly appreciated. It now looks like my Facebook time will be spend on HealingWell.

Thank you for your input.

demtap said...
First I had to figure out what the prostate was...since I'm the wife. .

This has to be one of the most common compelling statements I've ever read on this forum and probably more common the most would think. You are most definitely on the right track by coming here and you should try to encourage your husband to come along as well.

Posted 10/8/2012 12:56 PM (GMT 0)
Take a breath and take your time to learn what you can about PC and the treatments available to you. Look for the best, most experienced doctors you can find. Get opinions and second opinions from a surgeon and radiologists. Start a journal and keep all your questions and notes in it. You think you will remember everything, but you get so much information you will not remember it all. Go along with your husband on his appointments and take notes. Get copies of any and all tests and procedures. Write down all you questions before your doctors appointments and have them answer all your questions before you leave the appointment. Ask any questions you want to here at HW. Create a signature with your husbands stats in it.

Good luck to you. Your husband will be okay.

You can read what I went through by clicking on the link in my signature.
Posted 10/8/2012 1:30 PM (GMT 0)
demtap

I've found this to be really helpful, so much so that I keep a copy home and a copy at Gigi's place. Me and my Doctor Son-in-law, aka Gigi's Dad, frequently refer to it.

What I really like about it is its written in a way I can understand without a lot of medical terms I can never really figure out.

malecare.org/advanced-prostate-cancer-program/

Gentle Hugs to you and your hubby. You two can and will beat this beast!

Bud

We will beat this crap

Post Edited (Raddad) : 10/8/2012 11:15:12 AM (GMT-6)

Posted 10/8/2012 4:38 PM (GMT 0)
Hello demtap and welcome to our little corner of the world. As others have stated there is a great group of folks out here that will help as much as you want/need - no "dumb" or "embarassing" questions so don't worry, ask away!

With respect to Perineural Invasion , here's a link that I think explains it very well:

http://myprostatedoc.blogspot.com/2011/06/perineural-invasion-on-prostate-biopsy.html

After you've read this, go back and read how others have dealt (quite successfully) with having Perineural Invasion part of their statistics - Bohemond, nhwife, and others.

Slow down, take your time and do your research, which should include getting a 2nd read on his biopsy results. You guys have time, so in addition to spending time on forums such as this one whereby you can gain invaluable input from those that have "been there, done that" I would also suggest getting multiple insights from each of the various medical disciplines including surgeons, radiologists and so on. Go to this realizing that each will promote their own treatment and weigh that into your decision making process. When you talk to the medical professionals, insist on getting their own personal result/statistics with respect to % recurrence, continency issues, ED issues and so on. Push them to also explain what "continency" means - for some will consider continent to be "only one pad per day" which sure as hell isn't continent to me! They all keep records so don't be shy in requiring this information from each - and if they tell you they don't keep stats then that to me would be a warning sign.

Spend tons of time on the internet and use that as a resource as well, understand this beast called Prostate Cancer and what makes it tick and what is available to beat it down; find current studies and reports. To that end as I have done in other threads I would be happy to share some of the studies I have either pulled down from the internet or purchased, and would be glad to send copies to you - simple shoot me an e-mail and I'll reply.

Good luck with your research, and let me/us out here know what we can do to assist.

Best to you both.
Posted 10/8/2012 4:46 PM (GMT 0)
Demtap,
To help you understand your husband's situation. His gleason scores or 4+3 and 3+4 indicate intermediate risk prostate cancer. PC is classified into three risk areas, low, intermediate and high. This means that if not treated it has a good chance of spreading to other areas over time. Intermediate risk pc has a cure rate of 70% to 80%, and even if a cure is not effected one can live a normal life for 10 or more years and many have gone for 20+ years. There is a 10 year survival rate of close to 100%.
Just about every treatment option works well with low risk cancer, but when you get to the intermediate and higher grades more effort should be given to staging the cancer so the optimal treatment for his individual situation. The low psa and low number of cores bode well for a cure. A PAP test and a PCA3 test should be given to indicate aggressiveness; these are simple blood tests. You may want to get a color doppler or a multiparametric MRI of the prostate to gain a better understanding of the volume and location of the cancer and if there is any extracapsular extensions. It is always recommended to have his biopsy slides confirmed by an expert in PC, either Jon Epstien at John Hopkins or Bostwick Labs.
Latest research has indicated that for intermediate grade cancers a combo Brachytherapy/IMRT combined with a short course 6-9 months of hormone therapy has had the best cure rates with the least amount of permanent side effects. The brachy gives a high dose to the prostate and the IMRT hits the margins and prostate bed that cannot be reached by surgery. The HT makes the radiation more effective and kills any cancer cells that may have escaped into the blood stream.
Take your time and get several opinions from doctors in different fields. Once you gain information the fear of the unknown will go away. It is important to find the absolute best doctor to give the treatment. A surgeon should have at least 500 procedures and a radiologist or brachytherapist at least 250. A doctor who only deals with PC is better that one who divides his time with other diseases.
Good luck,
JohnT
Posted 10/8/2012 4:51 PM (GMT 0)
Like any jungle....once you start to comprehend more and more you get better at getting through it and knowing where you are at. Here are some suggested websites for more info and also consider getting second opinions (on your own doings not the good ole boy referral system) just for real comparison and contrasts (sometimes is hugely enlightment). I got 8 opinions and wish I had it on tape for y'all.

www.yananow.net  (1000+ patient histories, forum, explanations for most everything)
www.prostatepointers.org  (groups, forums)
www.phoenix5.org
www.paactusa.org   (newsletter, free pdf files on line)
www.marinurology.com
www.wmfurology.com   (these urology sites might help explain some on bladder and PCa issues)

yeah  - keep your wits about you, may turn out way better than you are currently thinking, cyst could be benign nothingness (we all hope).

Post Edited (zufus) : 10/8/2012 10:54:26 AM (GMT-6)

Posted 10/8/2012 5:05 PM (GMT 0)
Demtap,
You (and your husband) are already on the right track by finding this site.
Learn all you can and take your time. Lot's of good experience here on HW with all types of treatment. Best wishes,

Joe
Posted 10/8/2012 8:29 PM (GMT 0)
Nothing I can add to the excellent advice already given, so welcome, sorry you have to be here, but thanks for joining us.
Posted 10/9/2012 2:07 AM (GMT 0)
And DO take Water Guys advise and pick up a copy of Pat Walsh's book and read it. You will find it very helpful and enlightening..
Posted 10/9/2012 2:51 AM (GMT 0)
Welcome demtap and husband!
Sorry you had to join our little pity party but strength in numbers, as they say.

It is a scary time. We have all gone through it and many here still are.
Pca is a slow growing cancer and you both do have time to make the best decision for your husband.

Good luck in the coming months. We will all be here for you.

Hugs to you both,

Bill
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