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Newly Diagnosed...what a hellacious week

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Posted 3/15/2013 5:52 AM (GMT 0)
Thank you everyone for making this blog available. What a blessing that I stumbled onto site. Here's my week..

A week ago Yesterday my husband goes for his physical.  Interested in having his testosterone checked as he knows a few guys who are low and taking hormones.  Remembers his boss's horror story of having a high psa he was age 50 and had pc.  Husband is only 42 so he had to lie to drs and said he had family history of pc so they would test his psa.

A week ago today they called him back into the clinic..his testesterone was low and his psa was 41.3 He called around and finally found a urologist who would get him right in. He calls me and asks if I did the Aflac Cancer policy which I was going to do when I can next which isnt until june.  Great policy they say if you do not get cancer in 20 years they will give you 100% of your premium back....Spoiler aler...always a day late and a dollar short...

The next day sees urologist, Performs DRE feels a slight bulge on right side.  Wants to do biopsy very concerned  because of his age 42 and psa 41.3 as we learn that this is 10x level.  Asks if we can do biopsy next week.  Husband says now works for him and talks dr into doing biopsies.

Had to wait a weekend from hell with no news.  We had an appt with urologist on Monday to find out biopsy results.  It was awful so many thoughts going through your head and a lot of tears shed.

Monday...Tests results Positive he has pc.  Right side; 3+4=7 involving two of six core biopsies and 15% of the total tissue.  Left side 3+3=6 involving one of 6 core biopsies and 10% of the total tissue.

Tues...Bone scan.  Negative thank god.

Wednesday...three and a half hour drive to Salt Lake City.  We live in Idaho.  We have two appts to consult with two doctors.  First one at the Gamma West Cancer center with Dr.S a radiologic oncologist or whatever he's called.  He told us that he would treat my husband as an advanced case because of his age and  because of his psa.  He would do four months of hormone therapy. After two months start either external radiation or internal.  External  would be 7 to 10 week tx five days a week.  and internal either the seed type or the temporary catheter four treatments two each day with two weeks inbetween. 

Next appt at the Huntsman Cancer Institute.  Dr. S a urology surgeon.  He wants Clint to do surgery.  He said open surgery because my husband has had a prior GI surgery 20yrs ago to repair a Mekels Diverticuli rupture.  I guess open better than robot for him because of possible scar tissue.  We scheduled surgery for April 11.  He said he needed to wait 6 weeks after biopsy. He goes over all the risks ED and incont.  He too concerned with age and high psa.  He orders biopsy slides to be sent to him for a second reading. He orders a CT scan.  cant get in today so we stayed over night.  Totally overwhelmed and exhausted by all the info. 

Today...had CT at the Huntsman Center.  Also Dr. ordered another psa. Drove home.

Tomorrow Dr. will call us with CT and psa results. Planning on telling the kids and family this week end when we have all info to give people.  I have been suffering in silence as I am a woman and I like to talk...

Questions and Advice is much appreciated...

*how do you tell your kids.  We have one son who has Down Syndrome, a daughter 15 going on 25, and another daughter 12.

*Husbands boss did Radiation and it was sucessful.  That is where our first appt was.  After leaving there my husband felt he wanted to go that route.  After leaving the Huntsman Cancer Institute we left with a surgery appt we know surgeons want to do surg and radiologists want to do radiation.  They were all good salesmen but we are not buying a car!  Confused at all the info.  Basically does one just rule out all the pros and cons and sucess rates??  Does it come down to those who do radiation mainly to spare nerve damage...ED and urinary probs?  If you do radiation it doesn't sound like if you have probs down the road that you can have the surgery.  But if you have the surgery and have probs  you can do radiation? And why wouldn't you just want to get the prostate out knowing it has cancer...just because of the two risks or what are the other factors that helped you make your decision??

Thank you for reading I know I am a wreck and my brain is fried from trying to take this all in.  But I am a strong person and so is my husband we went through a lot 20 years ago with all of my son's health probs and diagnosis and he is such a blessing.  I know one day we will call this pc a growing and learning experience as well.

Posted 3/15/2013 7:00 AM (GMT 0)
Hi there,

This may start a little controversy among us, but the "gold standard" of PC cure is surgery -- of course, that is for cases that are considered curable. Yes, your husband's PSA is very high, but it sounds like he has a good chance to be cured.

One thing about surgery is that the pathologist's exam of the removed prostate is the ONLY way to know the true extent of the disease within the gland. about 30% of the time, the post-op pathology differs from what the biopsy predicted. Remember that a biopsy only samples perhaps 1% of the entire prostate -- whereas the post-op pathology examines the ENTIRE prostate.

In about half of this 30%, the PC grade is UPGRADED (worse than predicted) and the other half find the PC grade to be DOWNGRADED (not as bad as first thought).

It is very possible that either surgery OR radiation could cure him. But yes, you are correct that you cannot fall back and go with surgery if radiation is the initial treatment and it should fail. At least this is true for external beam radiation -- because the scar tissue built up around the prostate, from the radiation, makes it very difficult to reach the prostate.

On the flip side, if the surgery should fail, radiation CAN then be given. Sometimes it is planned this way in advance. This is called "salvage radiation" -- which means it is an attempt to complete the cure that was begun by the surgery.

With external beam radiation as the primary treatment, some medical experts fear that the radiation, itself, could trigger its own case of cancer 15-20 years into the future -- and your husband would still be a young man. You can ask a radiation oncologist if this is true, or if the latest radiation technology has solved this problem.

It is very wise of this urologist to request your husband's original biopsy slides so a second opinion can be made.

Your husband's Gleason Scores are not too bad. The 3+3=6 is a low risk cancer. The Gleason 7 is not as bad as it could have been because it is a 3+4 (as opposed to a 4+3). The prevailing type of cancer cell within a sample is assigned the first number and the secondary (if any) type is the second number.

Thus, with 3 being less aggressive than a 4, his Gleason 7 is the "less aggressive" type and can almost be thought of as Gleason 6.

However, his high PSA number suggests that treatment should be done as soon as he is recovered from the biopsy -- probably within the next couple months.

After getting the results of the second biopsy opinion, here is what he should do:
1- visit a HIGHLY EXPERIENCED radiation oncologist & learn the pros & cons of external beam and seeding.
2 - visit a HIGHLY EXPERIENCED urologist/surgeon & learn the pros & cons of a radical prostatectomy,
which is the complete removal of the prostate & related glands. This could be the same urologist he
is seeing now.

After weighing all the good & bad points as applied to his situation, you & your husband can make an informed decision based on his confidence & comfort level. In ANY case, make sure that the doctor has performed at least SEVERAL HUNDRED treatments of the type he chooses.

If you go for surgery, the success rate between open and robotic procedures are about the same. So it would be fine if he needs to avoid "Mr. DaVinci."

With your husband being so young, he would likely recover very will from surgery. The skill of the surgeon is VERY, VERY important. That is why 300+ previous ones are important to ensure that a surgeon (or radiation oncologist) is beyond the learning curve.

If they are able to do nerve sparing surgery (this refers to the nerves that control erections), he should also recover nicely in the sex department. However, be sure to make sure the doctor discusses the probability that erections probably will NOT be at the same level as however they were before the surgery. I think this does differ from patient to patient, though. And it can take anywhere from a few months to a few years before erections return.

He should also be continent after surgery -- after a short time where there is some leaking, etc. But eventually he should be 100% continent, assuming that nothing out of the ordinary takes place.

What a shame that your husband had to "trick" the doctor into giving him the PSA test. The fact that it led to the diagnosis shows the folly of the medical profession (or insurance companies) for not doing PSAs before a certain age.

You might want to purchase the 3rd edition of Dr Patrick Walsh's "Guide to Surviving Prostate Cancer." It has tons of info!

There will be lots of people here jumping in with additional advice & info for you, so stay tuned.

Good luck to him!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.

Post Edited (HighlanderCFH) : 3/15/2013 1:07:12 AM (GMT-6)

Posted 3/15/2013 9:12 AM (GMT 0)
Hi,

Take some time to breathe. All this is coming at you fast and furious, and the truth is that you do not have to make up your mind right away.

You've already started to sort out some of the issues that we all go through in making the decision. And you are right that every doctor tends to recommends what he knows and does for a living -- it would be scary if he didn't.

When you mentioned GammaWest, it rang a bell with me. It is because they published their 5-year results with temporary implants (High Dose Rate (HDR) brachytherapy), and they were excellent. Among intermediate risk men, 94% had no significant PSA increase 5 years out, and the side effects were very low. Here's an abstract (Click on the link below to read it):

High dose brachytherapy as monotherapy for intermediate risk prostate cancer.

There's no other therapy I know of, except maybe SBRT, where 83% of men retained their potency, with only low chances of transient irritative side effects. The reason that this therapy is so effective is because it treats a margin outside of the prostate, which surgery cannot, and because the high dose rate radiation is especially effective at killing prostate cancer cells while preserving healthy tissue.

Because it treats a margin beyond the prostate, local failures are rare. However because the total dose given is so low (only 39 Gy), the prostate can simply be re-treated. Contrary to what many urologists say, salvage surgery is possible - there are surgeons who specialize in that - but it is not the salvage treatment of choice.

The chief benefit of surgery is that you get a pathology report afterwards that tells you what was in there. The other benefit is that if the surgery was curative, the PSA immediately drops to an undetectable level. If you get an excellent pathology report and an undetectable PSA, that can give you a lot of peace of mind. However, compared to the 94% 5-yr cure rate for intermediate risk treated with HDR brachy, Johns Hopkins (arguably the best at surgery) reported a 77% 5-yr cure rate for intermediate risk men treated with surgery:
Biochemical (PSA) recurrence after RP at Johns Hopkins by risk category

Even with nerve sparing, potency preservation is only about 40% or about 15% without nerve sparing. Incontinence usually clears up after about a year, although stress incontinence and climacturia (urination at orgasm) may continue. Penile shrinkage is often a problem as well.

Salvage radiation after surgery treats a much wider area of the pelvis and side effects are worse. Often, hormone therapy will be necessary as well, which increases the risk of impotence.

If you do decide to go for surgery, the two most important questions I think you ought to ask surgeons you interview are:
1. How many of this type (i.e., open or laparoscopic or robotic - not the total of all) of surgery have you done? (A good answer would be 1,000 or more.)
2. What is the positive margin rate you have gotten in the last year? (surgeons at Johns Hopkins get about 10%; surgeons at community hospitals may get 20% or more, which is terrible)

The only surgeon I know of who is reporting excellent potency preservation is Dr. Ash Tewari at Weill-Cornell in NYC. He's developed a technique where he pulls less on the cavernosal nerves, monitors penile blood flood, and stitches up the urethra on all sides. I wish everyone did it that way.

I talked to 6 different specialists before I made my decision. As you interview doctors, I suggest you go in with written questions and write their answers down immediately. It's too easy to miss something important while you're trying to process what you just heard. Many very good doctors are poor communicators, so don't hesitate to stop them and ask for definitions of their "medicalese" terminology. Good doctors should give you their frank assessment of the risks and side effects of treatment. One line I heard a lot was "this is what I'd want my own father to do." I always wonder what their relationship was like with their father. ;-)

- Allen
Posted 3/15/2013 9:33 AM (GMT 0)
I forgot to address your question:

damgoodview said...
And why wouldn't you just want to get the prostate out knowing it has cancer

If you had complete assurance that not even a few cells had escaped into the prostate bed or local lymph nodes, it would be good to get it out. However, with his Gleason 7 and high PSA that is not assured.

With radiation, and especially with high dose radiation (temporary implants), the killed cancer cells left in there may serve a useful purpose. The dead cells are presented to the immune system, which creates antibodies against similar cancer cells. Those antibodies may then seek out and destroy other cancer cells that may be circulating elsewhere. This is called the abscopal effect. It sometimes happens that tumors completely outside of the radiation field regress after a primary tumor is irradiated.

- Allen
Posted 3/15/2013 9:37 AM (GMT 0)
Damgoodview, so sorry you have to be here. I don't have a lot to add, you've been given some good advice and I'm sure more will come. I just wanted to say I was 42 at dx, 44 now and have 2 children, 8&12. I know what you're going through.
Time to learn, ask questions, and even vent when needed.
All the best with your research.
Posted 3/15/2013 11:18 AM (GMT 0)
Hi there, guys have given you some great advice, I just want to emphasize one point: it is EXTREMELY important in prostate cancer to seek out the best surgeon, or the best radiation oncologist/center. The skill and experience of the surgeon/radiation oncologist can mean a world of difference in the treatment of cases with intermediate and high risk. All the best to you and your hubby. I am pretty sure that you are right when you say "I know one day we will call this pc a growing and learning experience as well"
Posted 3/15/2013 12:10 PM (GMT 0)
Firstly, sending you a soothing hug from over the pond.

We can all remember too well this awful period between diagnosis and treatment choice and it can be totally overwhelming; I remember feeling like the top of my head would blow off! Hang on in there, try to stay calm and most importantly believe it will get easier.

Some great advice already above and others will chime in. I’ll just echo the suggestion that you take notes during all appointments as who said what can easily become blurred when your head is spinning. The best thing about PCa is your have choices – the worst thing about PCa is you have choices so take your time, learn all you can and lean on each other, you will indeed get through this and come out the other side changed and no doubt even stronger.

Only you and your husband can decide what is best insofar as who and when you tell the news to but maybe consider holding off a little while until you know more. Adding the stress and upset of scared/shocked children at this stage may not be helpful to you both.

Keep us informed of your journey, ask anything here but also, you just come here and talk to us or vent any time you feel the need!

Wishing you both well.

Susan
x
Posted 3/15/2013 1:12 PM (GMT 0)
Take you time in making a decision. When all this first hits you will probably be your lowest point in this journey. I have never told anyone other than my wife about having prostate cancer. My kids were 13 and 16 when I found out. I will tell my son one day. You can read what I went through and how I came to my decision of treatment by clicking on the link in my signature.

Good luck to you. You are going to be ok.
Posted 3/15/2013 1:24 PM (GMT 0)
Hi dam....sorry you have to be here but glad you came here for support.  I was in the same boat as you and your husband.....not knowing what to do...surgery or radiation. My first 2 Uros both said I needed surgery and they were local. My last one who I trust and is more experienced and has actually done and taught the robotic surgery is the guy who recommended radiation...so I chose that route.

As some have already said...the Gold standard is surgery because you get it out of you and they can check the prostate out and tell for sure if it escaped the gland. We radiation guys never really know if we got it all or not.  I too was told radiation because of my high PSA of 94....but I also had Gleason 9 which really makes me a better radiation candidate.  I find it strange your husband has such a high PSA yet a fairly decent Gleason score....don't know...maybe others with more experience can say.  It sounds to me like either option may be good for you.....at least with surgery...you can always go back and do radiation...but if you go radiation first....most of the time they cant do surgery after radiation.

As far as how to tell your kids....that's a tough one.  Mine were a little older at 25 and 22 and my oldest son broke down in tears which I didn't expect him to do....my youngest took it OK..(Maybe because he hates me...LOL).  Its a tough thing to do no matter what....Wish you the best of luck and you are already doing the smart thing by asking people who have been there, done that with prostate cancer.  Its best for you 2 to research all you can on each treatment choice before you make the call. 

Hope the best for you and your husband...chris

Posted 3/15/2013 1:29 PM (GMT 0)
Hi damgoodview, and welcome both of you to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on. Please keep in mind that with Clint's statistics you have time - time to learn about PCa and the various treatment options - so don't panic! Along those lines, while you may have made an appointment you have the right to cancel should you decide on something different - after arming yourselves with as much information and data as you can.

So then after a couple of deep breaths, one of the first suggestions I would have for you is to get a 2nd read on your biopsy slides. Labs such as Bostwick and Epstein are two of the best and a 2nd opinion is usually a good thing to add to your dossier.

Along with forums such as this where you can learn from people that have and are going through what you are, do as much internet research as you can. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome (kinda like what Susan/over the pond was describing!) as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding your choice of treatment. There are a number of great books out there as well - Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey.

You have already talked to and met with some of the medical experts in the different treatment approaches; you may want to consider meeting with more. Unfortunately as you have seen, for the most part each will strongly suggest what they do as a treatment option - you simply need to work through that, and in fact your analogy about not buying a car is pretty close!

As you meet with these professionals, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining;) same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me. This goes directly towards your question "Basically does one just rule out all the pros and cons and sucess rates??"

As part of my journey to learn about the various treatment options, including success rates and quality of life results, I downloaded, purchased, and copied a number of studies and results that I would also be happy to share with you, so if you are interested shoot an e-mail my way and I'll reply right away.

We are all out here to help - my very best wishes to you both in your journey.
Posted 3/15/2013 1:58 PM (GMT 0)
Welcome. It's good that you have this outlook, because right now you are (as you should be) undoubtedly "drinking from the firehose" to gather as much good information as possible.

It turns out that a couple of the experienced members of HW/PC have collaborated on a thread that was made for you (your husband), and others like you, who were just diagnosed with PC. It is still new, and still a work-in-process, but it is information that we felt just about each and every "newcomer" should know...and might not immediately know.

Here's the link to that thread, which is appropriately titled, Newly diagnosed with PC? — read this thread first.

An important first question: Who read his slides? (read the thread if you don't know what I'm talking about)

best wishes...
Posted 3/15/2013 1:59 PM (GMT 0)
Hello I am so sorry to meet you this way. I am also new here, my partner of 27 years just got his psa results when we went in for blood work... It was a 46 the first time and a 41 the second a week later.<he is only 52 years old> I know how you feel, or at least how I feel. So <his biopsy is scheduled for the end of the month, and we got the psa at the end of LAST month> needless to say its been a very emotional time, more for me than him. I have read everything I can and been on the computer late for a month, he either doesn't want to know, or is and I suspect this is the one, being the strong one for me. I dont have any usefull information for you other than to keep reading here, it helps to see that others have gone through the same thing...I say it helps but I am very selfish, my real concern is for us and the way our lives will change. The thing is, life will continue and we will make the most of it no matter what, over the last month I have realized how much I love him and how much for granted we take every thing on a daily basis, it kinda makes the moments we have now more special even if my lungs are tight and my eyes full of pressure and from time to time my mind just goes "blank" becasue its hard to know what my feelings are at the moment as so many of them pass through my head at one time. Never give up, who knows what the future holds for any of us many of the post here are about hope and positive thinking...No assurances that it will make a difference in his condition, but giving up definatly will make a difference and it wont be a good one. I wish you the best, If others read this and had a high PSA like 40 or up can you please give us a little more information, you can google all you want but dont find a whole lot of hope in medical articals. Anyway hang in there and know that your not alone even if you feel like you are.
Posted 3/15/2013 2:11 PM (GMT 0)
hey whats this "dont have a poll yet" it said vote and I said yes thinking I would be given something to vote on...looks like I voted already! lol a little humor in the day never hurts :-)
Posted 3/15/2013 2:20 PM (GMT 0)

DamGoodView,

Please refer to my profile and email me. I can share my experiences with the facilities and doctor with you.

Posted 3/15/2013 3:09 PM (GMT 0)
Dear DamGood,

I too had to make the decision between radiation and surgery.  For me it ultimately came down to my own personality--I wanted to know the extent of my disease.  I didn't want to wonder if every little ache and pain was the cancer spreading because the radiation missed something.  With surgery they can look at the prostate and also you know that your PSA should become undetectable, but with radiation it may not.  I was lucky enough to have friends and relatives in the medical field where I live who gave the name of an experienced surgeon to do the procedure.  With your husband's age he should recover well.  I am a little over 13 months out from my surgery and can honestly say--at least for now--that things are pretty much back to where they were prior to surgery.  You are going through the worst of it right now, but know that things do get better.  There are many success stories with both options and you need to decide which one you are most comfortable with.  Best wishes to you.

Posted 3/15/2013 3:34 PM (GMT 0)
Allen The abscopal effect you mentioned is an extremely rare event seen during the treatment of  kidney, melanoma, and lymphoma cancer, using ipilimumab with radiation therapy.  Human treatments designed for PC are in early stages of development.  Unknown if and when it will be available.
Posted 3/15/2013 3:54 PM (GMT 0)
1otherSimon,

Since you are new I have opened a new thread for you so people can say hello and answer your questions.

Here it is: www.healingwell.com/community/default.aspx?f=35&m=2673382

Welcome to the forum.

Oh, and as for the poll on this thread, it is easy for new members to check the "I want to add a poll" checkbox by mistake.
Posted 3/15/2013 4:11 PM (GMT 0)
Welcome Damgoodview and 1othersimon. Your loved ones are very lucky to have you so involved with their treatment options. And it appears you have a very good start on understanding already what those options are. The responses you have gotten are so good, I really cant add anything, except that when you have appointments, it is ok to voice record your meeting with the Dr.. That way, you can go back and listen to it later if needed. Its always best to ask "Dr., our heads are spinning and we are learning a lot of information very quickly, mind if we record our meeting so we can refer to it later, rather than call and ask you to repeat or clarify later?" If the Dr. objects, then that is a Dr. you don't want.

Btw, my psa was 49.7, G9 at age 51. I am fine.

I chose surgery, but you have to make your own choice. I probably could have chose radiation and/or HT and still would have been fine. I just want to let you know that there are patients on this forum with much higher psa's that are also doing well.

Come back anytime-for info or just to vent.
Posted 3/15/2013 4:52 PM (GMT 0)
44 years old 6 weeks after di vinci robot surgery and everything going great for me. In the last week most of the dribbing went away and the minr pain. I dont know if age has anything to do with this. I know what your going through. Had blood work done in november PSA was 3.9. 2 years ago it was 2.6. I caught it and told the doc. Went to a urologist surgeon did a biopcy next day called and told me I had cancer 4 out of 14. The first thing I did was come home get on line and get as much info as I could and found this site. The one thing to remeber is this is not a death sentence pc is very cureable . I went with the surgery because of my age and i just wanted the big C out. and everythings worked out great so far. Just got released to go back to work. Now I just half to get back in shape. Relax take a deep breath you have friends here. Great friends
Posted 3/15/2013 4:59 PM (GMT 0)
Hi Dam (I bet you didn't think about that becoming your first name when you typed in a user name!)
Many other people have given you great advice on the medical questions, so I'll speak to the one that got less attention -- how to tell your kids.

I personally would wait a little before telling them, for two reasons. First, it gives you some time to come to grips with this yourselves. If you're still scared and overwhelmed, they'll pick that up and be more frightened themselves. It's a tough conversation, so you'll want to be in good emotional shape to have it. And secondly, you'll have more information and clarity as to what you're going to do, so you'll be better able to answer their questions.

Our kids were 6, 8 and 10 when my husband was diagnosed. I ended up telling them without my husband because he couldn't bring himself to do it. And frankly I worried about how well he'd handle hearing the questions I thought they'd ask...my oldest kid is a huge worrier, and I correctly predicted his first question would be "Is Dad going to die?" BTW the answer I went with, since in our case the cancer is considered incurable and terminal, was "We're all going to die some day. We just don't know when. Dad could die from this, but he also could live a really long time with this" (hey even just two years is a really long time to a kid! it wasn't a dishonest answer). I didn't give more info than they had to have. I wanted them to know he had cancer, and that he was going to have some treatments that might make him more tired or irritable. Anything beyond that -- I've answered their questions, and I check in on how they're feeling about things, but I don't go beyond their questions.

I think it helps to time it -- initially my husband was in a lot of pain (bone mets) and crabby as all get out. By the time we told the kids, his hormone therapy had kicked in and he felt pretty good. They were scared initially, but then they saw he was still Dad, things were pretty normal, and I really don't think they think about it much now.

Be ready for them to ask how it'll affect them. I had a friend who was gravely ill, and had to tell her tween daughter that she was going to another city for a few months to paraticipate in a clinical trial that was very much her last chance. Her daughter's reaction? She wanted to know who was going to drive her to volleyball practice! Kids live in a smaller world, and they don't fully understand what's coming. So know that their questions could be very very specific and practical.

Good luck with all the info and decisions you face.
Posted 3/15/2013 5:23 PM (GMT 0)

Putt said...
The abscopal effect you mentioned is an extremely rare event seen during the treatment of kidney, melanoma, and lymphoma cancer, using ipilimumab with radiation therapy.

Several radiation oncologists I've talked to believe it is common and helps to account for the apparently superior results on intermediate and high risk PC seen with hypofractionated protocols like SBRT or HDR Brachy, along with the treatment margin.

I've discussed with two ROs and an oncologist using this effect for my friend who just had lymph node radiation for recurrent PC. Ideally, I'd hoped to enhance the abscopal effect with neoadjuvant Provenge to beef up the innate immune response, and follow it with adjuvant ipilimumab to limit adaptive immunity from the cancer afterwards. Due to cost considerations, we had to settle for less than that, but remain hopeful.

This is an emerging field that I think may change the sequencing of therapies for PC. If you're interested, here are a few references I found useful:

The Confluence of Stereotactic Ablative Radiotherapy and Tumor Immunology
Radiation as an immunological adjuvant: current evidence on dose and fractionation
Maximizing Tumor Immunity With Fractionated Radiation

- Allen
Posted 3/15/2013 6:03 PM (GMT 0)
I was 42 at dx. My kids were 2 and 6. They are now 7 and 11. They still don't know. If I ever have disease progression I will tell them. The only thing telling your kids will do is cause them un-due stress in their lives. There is nothing they can do to help your husband with this. They will just live in a world of fear overing know what is going on. I will only tell my children, if and only if I am ever told I am dying of PCa. Otherwise, telling them will only cause them pain. This is just my opinion. Obviously, you have to decide for you yourself what to tell you children. I choose not to tell mine, until it is absolutely necessary.
Posted 3/16/2013 12:20 AM (GMT 0)
Hi,
Welcome to HW, sorry you had to find us but you will be glad you did.
All of us here can relate to what you are going through right now. Hearing the "C " word directed at you is a new, unpleasant feeling.

I also choose Da Vinci surgery because I wanted the cancer out! If there was anything remaining I could address it later with radiation. Yes you can't have surgery After radiation.

Your husband's PSA is high but there are many men here that have had much higher PSA 's and are doing just fine. The Gleason scores are pretty average and the tumor doesn't sound that large so he has that going for him. I would agree with others, get more opinions from some other doctors, you have some time. You both decide what is best for your husband.

As far as telling the kids, they are young, you may want to wait until you get everything figured out and have a plan.

Best of luck with your decisions. Keep in touch we are here for you.

Bill from Florida
Posted 3/16/2013 1:14 AM (GMT 0)
ChrisR, I agree 100%. I've told my kids the bare minimum. Nurses and techs have said I should tell them ( even given me books on how to) but I don't see the point. They are going to grow up fast enough.
Posted 3/16/2013 1:33 AM (GMT 0)
Hello and welcome to a place you thought you would never be. Great people here and I didn't find this forum till after my surgery. I was 43 at DX with 1 girl 18 and two boys that were 10 an 6. I was scared stiff at first and calmed down after meeting and talking to people that had go thru the same thing. I was a Gleason 8 after biopsy and that's all I could think of until I met with my Uro who ended up being my surgeon.... What a great guy with an awesome team! Having full trust in my surgeon made my stress level come way down. As for the kids, well I was straight forward with my daughter and she took it hard but she's strong and was strong for me. My two boys, we were kind of vague with them and they just knew I had to have surgery and all would be good. I chose surgery because of my age, pretty sure it was contained, and I liked the idea of the prostate out of my body and look at extensively to see if it was contained. My Gleason score was lowered to a 4+3 and contained. Pads for a few months and all the parts work down there... And work better with a little help. My wife said the side effects won't kill you but the cancer will so I went for it! Good luck to you, I'm sure your husband will be fine!
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