Does Anyone Have Any Encouraging Words?

My husband was diagnosed two weeks ago with Prostate Cancer. I have found this forum so helpful in so many ways. We had a consult last week, and the doctor scared the heck out of us.

Overall, my husband's story is this:

PSA of 3.9 until January--now 5.2
Overall Gleason Score of 7 (unfortunately 4+3)
DRE: nothing detected.
Age: 68 years old
Biopsies had 4+3 in RLA (5% of tissue): RLM 10% of tissue); RLB (<5%); RMB (<5%); LLA (30%); LLB (50%); LMA (40%); LMM (40%); LMB (30%). Other samples have 3+4 at lower percents.
Husband in excellent physical condition and very active

The bottom line is that the cancer showed up at some level (between 5-50%) in every single biopsy sample. We knew the biopsy report was not good, but we also felt we could beat this thing. We are fighters. The doctor came in and said he had hoped for a better report and that the report was very bad (his assistant used the word "grim.") He said the cancer was widepread.

We have faith in this doctor. He has performed over 2500 surgeries, and is a leader in robotic surgery. He has no bedside manner (which is fine with us--in fact, we like a straight shooter). He was blunt--he does not think he can spare my husband's impotence, but says he is 90% sure he can prevent permanent incontenance. He said he planned to take the lymph nodes as well as the protate.

I asked every single question I had written down. Then I started to freak. I told him I didn't care about ED, but that I needed this man, my very best friend, in my life for many more years--10-15 more years. I guess the "good" news is he said he thought he could get me my 10 years. I asked how long we have to make a treatment decision, and he said a couple of months. He encouraged us to get a second opinion but told us in no uncertain terms he did not think my husband was a candidate for radiation.

We are scheduled for staging next week. After that I plan to schedule the surgery immediately in July (the earliest the doctor can perform the surgery) but have INSISTED to my husband that we seek a second opinion from Duke with a radiation (seeding) oncologist. I found the best radiation doctor I could--a good one--and we have a consult scheduled with him the end of this month.

My husband is depressed, doesn't want to talk with anyone. I am so scared of losing the very best friend I have ever had. I am desperate to hear from others here that we can beat this thing. That my husband will live.

irmaly

Ok take a deep breath, calm down, you will have your best friend at your side for years and years to come.

Yes you two will beat this prostate cancer crap.

Yes get second opinions. Take your time in deciding on a treatment plan. Yes I understand the first reaction is - Get this thing out of me! - Still - make a educated choice. Second, third opinions are always good. A surgeon's choice of action will be surgery. Is that the right way to go? Maybe, hence second and third opinions.

ED - ok sure that will come - still there are a lot of things that can help that. MUSE, Caverject, BiMax, Trimax - when you two get to that point - ask here. There is a lot of first hand experience - with successful results.

Stay with us, speak out, rant,rave whatever makes you feel better.

Our brothers and sisters will be adding more here.

HUGS!!

Bud

Thank you so much for your responses. I have actually been doing fairly well with all this, keeping my head up and reading everything I can find. I have followed the excellent advice in other threads about what to ask doctors, how to read biopsies, and the like. I guess today it all just came tumbling down, trying to be the rock in all this. To make matters worse, my husband's brother died of prostate cancer back in the winter (he was 78). Because he never wanted to talk about his cancer, we have no idea if he ever even went for treatment. We lead very active lives and have lots of interests. I so much want a good quality of life for my husband and many, many more years. I am a pitbull. I never give up, and I fight like hell. I just needed some re-assurance that there is a chance we can win this thing.

Verteran, the Doctor was very receptive to any all and all questions and said we were doing exactly what we should be doing--looking at all the options and asking all the questions. Unfortunately, my folder with his answers is in the car, and the car isn't here right now, but I did ask him to make his best case for surgery over radiation. There were three things, the most important one I remember without my notes was that he strongly felt he needed to get the lumph nodes out. I can't remember the other reasons off hand (other than the usuals like can't come back to radiation), but he made a persuasive case. As I said, we have a consult with an excellent radiation oncologist specializing in prostate cancer the end of this month at Duke. I will be asking him the same questions and asking him to make his best case as well. I realize my husband is older than many on this board, but he is, other than cancer, fit as a fiddle--eats well, exercises, normally laughs a lot, and has no other health problems. My feeling from the surgery doctor was that his good health and active lifestyle also made him a good candidate for surgery. The doc didn't say this outright, but I came away with that. We haven't had the bone scan nor the MRI yet. Those are scheduled for Thursday. We are trying to get through this one step at a time and are hopeful those will be good, although a lot of my reading says they aren't always true as to whether the cancer has spread.

irmaly, not much to offer that the others guys haven't other than my support and prayers for you two as you go thru this preliminary process of elimination. Once you do sort thru things and come to a decision, you will be amazed at how much stress and pressure will be lifted. Study hard, consult wisely, read all you can, reach an educated decision and then don't look back or second guess it. Good luck in your shared journey.

Your biopsy slides are kept with either the pathologist whom did them or a hospital connected to your case, mine were at the hospital I went and picked them up and you have to sign them out, but you own your slides. So, either you or your doc(s) can arrange to have slides sent out to anybody (for further opinions or additional testings), they literally stay good sealed in wax slides for decades, but they might not save them for more than 10-15 yrs. (that varies). I just picked mine up after like 9 years and got to see the pathology stuff under a microscope and got photos done by local patho-doc and have shared them on the net. Give your husband a dose of good news, you just talked to another guy (herein) whom had way worse stats and very high risk even had total urinary blockage and in emergency room cause of volume of PCa found.  The good news is still living pretty decent (thus far-knock on wood too), year 10 just reached.  Still there are therapies to choose as to 2nd or 3rd line choices.  So, very likely PCa is hopefully not the worst enemy in his life, please tell him this.

PAP is an older test to see if you have bone breakdown showing, and if so an idea on mets happening or not, it is a blood test and there is also a urine test for bone breakdown called Pyrilinks-D and other names. Dr. Strum recommends more extensive testings so as to get any information possible on ones disease (see his Primer on Prostate Cancer book). Other docs believe they know it all and do there own selective tests or therapies and don't look at what other docs do or have done, thus the med folks do not all agree on almost anything in this, welcome to the brave new world herein, and nothing is simplistic here and exceptions exist and anomolies....that is my heads up for you. You will find out sooner or later, there is enough controversies in this to start a library. Best to your choices and results.

Post Edited (zufus) : 6/3/2012 11:41:55 AM (GMT-6)

Hi Irmaly,

I know how you feel...have been there. You are so lucky to have found this site...we went through the ordeal without much knowledge and extremely scared. His status is not what we had hoped for but....yeah, grim kinda sums it up.

Today my husband is healthy and we feel very blessed. I have learned to just take it day by day.

I will be thinking of you and sending prayers.

Best wishes,
Kathy

Hello Irmaly:

Welcome to HW but sorry you have to be here.  It sounds to me like your doc may be a little overly pessimistic with the word "grim".  Remember, despite the number of samples, it's still a G7, there is no palpable tumor on DRE and the PSA is relatively low.  I would guess that your husband might respond well to treatment.  I do agree with F8 and JohnT on this...with a good probability of positive margins then surgery may not be your best bet.  I think it's great that you are seeing a good RO as a combo brachytherapy and IMRT with perhaps a course of HT could be an excellent treatment choice. 

Please keep your head up.  There are men on this forum who have had far worse stats than those of your hubby and are doing well.  Let us know how you progress.

Tudpock (Jim)

Irmaly, you have been getting some really great info from the folks here and that is the value of this site. This is probably the finest collection of knowledge, experience and support of any PCa discussion on the internet.

I don't have much to add except to echo that you have the right mentality to address this thing head on. Your husband is blessed to have you in his corner.

I know that the folks here have seen me post my mantra before, but remember, "Every Day is A Bonus", so heads up, move forward and choke the life out of every day.

My best to you and your husband,

Sonny

Imaly

The following post by Sonny gives some info on the new Bostwich test. You will have to request it. Your Doc can send the slides to Bostwick requesting this particular test. PAP can be given by any doctor as it is a standard blood test.

https://www.healingwell.com/community/default.aspx?f=35&m=2428106

Hi Irmaly,

Just cutting and pasting what I may be able to respond to. You asked for encouragement... . Your hubby's PSA was 3.9 and rose to 5.2 (with negative DRE) in about 5 months you said? This is probably the Gleeson 7 acting out,  and I think you are correct to be treating it seriously (we did too). My hubby had same scenario but not as widespread 5 years ago, as he was 20 years younger (48 at the time) than your hubby. The initial biopsy showed a 4 + 3. We sought second and third opinions and learnt of the multifocal nature of Pca, even though it was not showing on the biopsy (one core of 5% 4 + 3 plus PIN was showing only), and we learnt about the unpredictable nature of a gleeson 7. We asked the hard questions of everyone, and eventually found a nerve-sparing surgeon with lots of experience. Following surgery, our suspicions were correct, and there were several areas not picked up at biopsy which would have eventually spread. However it was down-graded to 3 + 4 overall.

This all happened 5 years ago, and my husband has now made a full recovery for which we are grateful.

What I am saying in essence is that it is quite likely with the rise from 3.9 to 5.2 and your fast and sure action, and consultation, that whatever decision you make,  you have probably caught it in time - namely contained within the prostate itself. The blunt-speaking doctor may be talking about taking wider margins to ensure this containment - Get a second opinion on that - The nature of the gleeson 7 may mean that this is recommended, but for peace of mind, seek a second surgical opinion too, while you are checking out radiation. Both these options are for pca contained within the prostate. The fact that your hubby is in excellent physical health is great, and the fact you are both fighters is a bonus. But you may be lucky like us, and therefore whatever option you choose you seem to have caught it... and you, like us may prefer to aim at 20 years rather than just the ten! The seeds doctor will have an opinion on all this too - make sure you ask that doc too, and compare and contrast, and question their answers.

Your surgical doctor sounds experienced. If he is, he may not mind you seeking a second opinion privately if you need to, but if he does, just don't tell him. We spoke to several doctors, and did our research like you. We did end up finding someone both kind and competent. I know it is a minor issue really, compared to the advise they give, but I really can't stand rude and insensitive doctors. I have met many,  and it is not necessary.  Just make sure his attitude is not because he is bored with his work and starting to treat people as a 'pattern' rather than individually. You have the right with such life changing information (about side effects) to seek a quick opinion, and then discuss with your primary doctor. If he is not willing to do that, he may not have your best interests at heart. If he has a good reason to not spare the nerves due to margins issues and the possibility of spread, then he owes you a detailed explanation whatever his normal manner.

Hope this helps. The worst thing is the uncertainty. You are doing all the right things to resolve it. Then question I would be asking now is, is he planning to take the lymph nodes to just routine check and biopsy (this is quite common) or is he concerned about the lymph nodes in terms of potential spead right now, and if so, why?  My hubby was told the same thing - as it turned out lymphs were fine. I don't think they can check this beforehand other than just other scans etc.

It is scary but you asked for encouragement. Just a few ideas to give you that maybe. You have to have hope... but I do think,  reading you hubby's stat's and situation  that you can have some hope here, regardless of what you both decide in the end.  You are dong all the right things. Keep in touch with the guys (& gals) here and they can support you all the way, each step of the way.   Good luck & kind regards,  Lana

Irmaly,

This doc of yours reminds me of the guy who diagnosed me. He was similarly blunt and had the bedside manner of a drill sargent. I don't remember much of what he said - I was shocked - but I do remember him giving me 17% of cancer being contained.

I am glad I had told him goodbye and found other docs. You mentioned Duke - it is where I had my surgery. See dr. Moul there. He is a very compassionate and very knowledgeable surgeon.

While I had surgery, radiation sounds like a very reasonable choice and can also be directed to entire pelvic area to address the limph nodes.

Finally, the HT alone or in combination with RT could be an answer.

I think you have many choices available to you, don't be bullied by a havy hand doc into an immediate decision. As many others said, take a deep breath and go slow.

Best of luck,

Greg B.

Iramly,

Sounds like you have done your research on your surgeon very well. I did the same thing with mine and the one testimonial that was hard to beat was when I asked my GP, who I trust with my life, if he would go to my URO to have his prostate surgery and he told 100% yes he would. My URO is very much like my GP in bed side manner which I like, they both take all the time I need to discuss me and my medical issues at every visit. I never felt pressured into doing any one source of treatment. My URO, being a surgeon, also had me discuss with their radiation oncologist on staff all RT treatments available even proton beam RT and with their help and the support of my wife we made the decision that surgery gave me the best outcome. So far I believe I made the right decision.

Good luck on all of your follow up consultations.

Terry.