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I am S.O. of Newly Diagnosed 45 year old male - need TONS of advice

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Posted 4/17/2009 7:19 PM (GMT 0)
Hi Everyone,

I've been reading the posts in this forum which are phenomenal. Just joined today because my best friend of 17 years (and my former boyfriend... I am female) has been diagnosed with prostate cancer about a week ago after biopsy. I don't have all his stats (nor does he) so I'm groping in the dark as to how to best support him at this stage. His parents are aged and in another state and he is single so I will be his primary support person throughout this. I have done a bit of research on treatments but feel like I'm not hearing/seeing everything. His doctor is Dr. Michel (in L.A.) and my friend told me that Dr. Michel recommended surgery (because of my friend's age) and Dr. Michel also told my friend he only had 4 treatment options. So here are my questions/concern:

1. My friend is EXTREMELY concerned about side effects of surgery. In fact just told me he will not have surgery and would rather die than deal with incontinence or impotence. From what I read in this forum those two results are possible but don't always happen and if they do, it's possible to deal with them and still enjoy life. Any advice from survivors on this front is greatly appreciated.

2. What are ALL of the possible treatments. I imagine there are more than the 4 that Dr. Michel told him.

3. Any advice/information on how I can support my friend who currently holds this outlook: hopeless, doesn't want his manhood taken from him, doesn't believe diet plays a role in health/healing (because Dr. Michel told him this) and is currently contemplating doing nothing and letting the cancer 'run its course'. I'm hoping where he is mentally will change and that this is just a phase he's going through.

Thank you so much in advance for your help. For all intents and purposes, I am his significant other in this.
Posted 4/17/2009 7:52 PM (GMT 0)

You're doing the right thing.  There are others, but the book I bought that has helped me sort it all out is (by Sloan-Kettering's) Dr. Peter Scardino's The Prostate Book, available online and at most bookstores.  You can check it out here: http://www.amazon.com/Dr-Peter-Scardinos-Prostate-Book/dp/1583332200.  The other recognized source is (by John Hopkins') Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, see http://www.amazon.com/Patrick-Walshs-Surviving-Prostate-Cancer/dp/0446696897/ref=pd_sim_b_1/175-5220518-3187439.  I also recommend a husband-and-wife first-hand account of their experiences, How We Survived Prostate Cancer: What We Did and What We Should Have Done, http://www.amazon.com/How-We-Survived-Prostate-Cancer/dp/1557048193/ref=sr_1_1?ie=UTF8&s=books&qid=1239997445&sr=1-1.

Best of luck and please feel free to ask the advice of the many experienced people resident in this forum.

Greg

Posted 4/17/2009 7:57 PM (GMT 0)
If your friend has been given the option of surgery then he is in not too bad of place - yes of course there are side effects but the other option is not to be considered - If he has been diagnosed this young - chances are he has an aggressive varient of the disease.  Not one that will take 20 years but more like 5 years till it gets bad.  My husband was diagnosed at 50 with an aggressive varient - I'd rather have him a bit incontinent and with erectile disfunction and be active and having fun then dealing with this MONSTER.
Posted 4/17/2009 8:03 PM (GMT 0)
Hello, BesT Friend and welcome to HW. The first thing we need is details, what's his general health, what's his stats when he gets his biopsy results? I would urge you to encourage him to come on here and discuss his concerns fears and needs with us. If no, then we are always here for you to come to in need. You pretty much summed it up in that there are risks and adverse effects from all the options available and that most of them deal with the areas of continence and impotence. These conditions can be worked thru and adjusted to, so it's not time to start planning not to seek treatment. Watchful waiting is a possibility, under the right circumstances for him, and doesn't require the patient to decide to risk death before loss of function. As far as fear of loss of both, that is a fear most of us here have had initially, at least. Fear of those conditions are far less than of severe and lingering death from untreated cancer, once one makes the mental adjustment of just what the end results is of either. You friend is still in shock and denial now. Information, support and sharing will help him to work past that, I hope. I am sure lots of advice and support will be coming your and his way shortly. Do try to encourage him to join us here, it will be very beneficial for him to find others who have walked the path he has before him now.
Posted 4/17/2009 8:17 PM (GMT 0)

I might have posted a bad link to Dr. Scardino's book, try this instead:  http://www.amazon.com/Dr-Peter-Scardinos-Prostate-Book/dp/1583332545/ref=sr_1_1?ie=UTF8&s=books&qid=1239999304&sr=1-1

Greg

Posted 4/17/2009 8:23 PM (GMT 0)
I can only give you specific information on Brachytherapy which is the treatment my husband chose.  If you want information of that, let me know as I'm always glad to help where I can! 

Posted 4/17/2009 9:16 PM (GMT 0)
The best advice I can give is to see a good prostate oncologist for a 2nd opinion; it was the best thing I ever did. Way too many doctors just don't do enough work in properly staging the cancer. Also an oncologist has less bias in the treatment options as he doesn't have a dog in the fight. Urologists will almost always recommend surgery, and radiologist will recommend radiation. There are a few good oncologists in the LA area so you are lucky. The Prostate Cancer Research Institue web site has a lot of information for the newly diagnosed. They have a list of oncologists and other doctors on their website.
In my own case all my urologists got my staging and recommendations dead wrong and had I followed thier recommendations I would have been in for a lot of grief. My oncologist was much more through and had a lot more knowledge of various staging tests and treatment options.
JohnT
Posted 4/17/2009 9:29 PM (GMT 0)
Without knowing or posting his stats, it would be hard for anyone here to even make a guess. What is his gleason score, his current PSA, and previous PSA's to see what the velocity was, did they determine from a biopsy any staging? All this makes a big difference in even beginning to know what treatment direction to seek.

Your friend needs to come to terms with his diagnosis for starters. If he would really rather die than to deal with potential side affects of Ed and/or incontinence, that is pretty extreme. But we don't know his age either, if he's 85 years old, he might have a good point.

Sounds like he's in the anger mode, quite normal for many at first, but that anger won't help him with what lies ahead. Glad he has a good friend like you to help him through this and perhaps even be his advocate.

The side effects from surgery, if that was the treatment path, varies so much, you can tell that from reading on this site. He might have little problem with either, or a lot, or somewhere in between. My wife and I went through the same process, and she would rather me be alive with her and our children and grandchildren then to be dead because I was worried more about ED or incontinene. PC is nothing to fool around with, it is a dangerous animal with a mind of its own.

I wish you two only the best, as you seek treatment methods. Since you listed no stats, its even possible he may not have to do anything for a while or even a few years.

Please keep us posted, and thanks for joining us here.

David in SC
Posted 4/17/2009 9:40 PM (GMT 0)
Thank you everyone for the responses so far. I have very little information (test results, specs) at this point because his doctor didn't give him any. He is 45 years old (title of posting) and had 2-3 'bad' PSA results so the biopsy was ordered. Now he's told he has cancer but he's not been told anything more than that. They can't even tell if he has a tumor or just random cells. He did a CAT scan today. Next week a bone scan, then a colonoscopy and a f/u visit scheduled with Dr. Michel in about 10 days. With so little information at his disposal it's hard to know what to do so I appreciate all of the input.

I do hope his pessimism is just a natural phase of dealing with the diagnosis and that it will pass. We have no idea extent of his illness at this time. I will definitely look into the oncologist for a 2nd opinion. Thanks so much everyone for the input. Please keep it coming.

Danielle
Posted 4/17/2009 11:21 PM (GMT 0)
Danielle, the shock and awe of being diagnosed with cancer hits everyone different too. Especially if it came out of the clear blue. In my case, my PSA had been climbing for years, leading up to 3 biopsy until they struck PC, I was shocked and disapointed but not surprised. At 45, your friend is way young, but there are several men in their early 40's that are dealing with PC, they might be able to comfort him and help him reason and reconcile this terrible dx. When you get the rest of the stats, please share, so we can help you think through this maze of treatments before you. If he had a biopsy, they have to give you a copy of the pathology report, that you should be able to simply ask the doctor for, its his right to know. Please keep with us.

David in SC
Posted 4/17/2009 11:31 PM (GMT 0)
Danielle
Welcome to the forum. Sound advice from all above. The doctor in all likelihood gave your friend his stats but he did not take them in (very common reaction)........make sure he gets the biopsy stats from the doctor as they are extremely important in the decision making process. I would particularly undertake just what JohnT suggests. Scanning methods are improving all the time and many doctors simply are not up with or bother about using the latest techniques. It is most important to get the best possible idea of the extent and location of the tumour before any decision is made. Then get opinions and treatment suggestions from a reputable surgeon, a radiologist and an oncologist (opinions from more than one of each is desirable.) It is a disease with quite a number of successful treatments and treatment selection with this particular illness is up to the patient. Make that decision as well armed with information about your circumstances as is possible. Your friend is in shock, is angry (why me?), and perhaps denial (this can't be happening) as most of us were on hearing the word "cancer" pronounced. Knowledge and information will help enormously in making the right decision. I wish him well during this rough patch............he is fortunate to have such a friend as yourself.
Bill
Posted 4/17/2009 11:57 PM (GMT 0)
Danielle thank you so much for joining our family. As we always say to new members we wish you did not have a reason to be here, however you obviously do. I to remember having the same thoughts as your boyfriend. I told my wife if I were to be impotent after treatment I would just as soon do nothing and die. Once the doctor informed me point blank that if I chose to do nothing I would not see 50 I changed my mind. I decided to live what I preached and I figured that there was a reason for this new chapter in life. I cannot tell you that I have enjoyed having cancer but I can say that the last 22 months I finally learned how to live life. Love is more important than sex, affection is more powerful than libido, holding hands means more than ignoring each other, sharing your hears and emotions will give both of you the reason for hope that he will need to forge the path forward. I pray that you will be a strong supporter and researcher. stay in touch with us and feel free to email me anytime if you would like to chat away from the forum.

peace and much love
dale
Posted 4/18/2009 6:26 AM (GMT 0)
Thanks to everyone again for the open-armed welcome and excellent advice. I'm going to pass on all the recommendations to him and hopefully get him in this forum at some point. He has a slight aversion right now to joining a cancer group but hopefully that will change. If he knew how supportive this group was I think he'd be floored. I certainly am. You're all spectacular. Heroes, I'd say... My sincere thanks.

--Danielle
Posted 4/18/2009 6:48 AM (GMT 0)
Hi Danielle,
I don't have much more to say than the group has said. I can say I was 44 when I joined this club. I have advanced prostate cancer but even I am doing well. I also was treated in the LA area. I live in Vegas, but lived around there 23 years and still have deep roots there. The City of Hope was an excellent place for me. Your S.O. should get a second opinion, and that's close enough. Also Loma Linda is a great place as well although it wasn't the place for me. UCLA/USC also rank very high. I have heard of Dr. Michel but I don't have anything to offer about him.

I came here in 2006 and know how much that this place was a Godsend. I welcome you here now as I have hundreds of others. You will see many very passionate about things, but all the intent is outstanding. This is the best place on the web for patient to patient interaction. Make yourself at home.

May peace be with you and your loved one!

Tony
Posted 4/18/2009 7:24 AM (GMT 0)
Hi Danielle,

I join with others in welcoming you here. My hubby was diagnosed in his late 40's two and a bit years ago, and in answer to your first questions - just quickly knowing you are early in your research - for my husband incontinence was never an issue (he was lucky and strong due to his age), and impotence has recovered slowly over 2 years to previous function. Secondly, the diagnosis of cancer is chilling - give him plenty of time and just be there gathering information at the moment - the fact that you know how he is feeling is a tremendous plus, so you are doing it right. Don't try to sway his mind at the moment - let him express it. Finally (sorry this is a little rushed and a bit like a list!), my husband had a complete aversion to support groups apart from this one here (which he reads with me and I post for him). He speaks with no one at all about his experiences at the moment, and some people are just like that. Therefore, be prepared to be your friend's only support if that is what he needs and requires. You can do it alone if you have to - he is lucky to have such a best friend, so good luck and try to stay calm. You will hear it often that "knowledge is power" and it is true. However it is also normal to feel overwhelmed. Try putting it all in a folder and making notes like a diary as you find out each new piece of info as you may loose track once you get some info on specifics. Make it available for him to read when he wants to followup on various things. The books others have recommended are excellent too, but being a bit of a summariser, I took notes from these books and also filed it in a folder which helped us keep a track of the info etc.
Keep posting any questions you have. Good luck & kind regards for now, Lana
Posted 4/18/2009 1:35 PM (GMT 0)
Hi Danielle,

Welcome. I'm new here too, my boyfriend was diagnosed this week with T2c Gleason 4+4=8 at age 47. Your friend is going to really appreciate having you there. I have a friend who had female cancer and she said her friend was her biggest support that she knew she loved her. Her husband was going through his own stuff, so she got most of her support from a friend.

Thankfully he saw another doctor yesterday, a urologist at the Cleveland Clinic. He already had a surgery scheduled at the VA who diagnosed him, but I told him to get another opinion. Someone here suggested he see an oncologist, but I can't explain to him why a urologist may be biased, the doctor told him he doesn't care what he decides to do. Can anyone suggest something else I can throw at him to convince him of the advantage of an oncologist over a urologist? I gave him the link to this forum, but he said when he came here he was confused by all the things people were saying. I told him how helpful people here are, but you can lead a horse to water...

Anyway, the doctor yesterday said they will cut his nerves and the Levitra won't work anymore, but said he could use a pump or injection. Any input on the likely effectivesness of these for him would be helpful. I told him I loved him so much I didn't care if he had ED when we first went out and he realized his Wellbutrin was making him need Levitra. I told him all that mattered is that he's going to be okay. I sense he's grieving about sex, he didn't want to come inside after our date last night. It kills me to see him upset, he's such a stoic, any little inkling he's upset is huge for him. The fact he was even talking about it means it's bigtime on his mind. Would I be giving false hopes to tell him that things are likely to return to normal with a pump/injection?

Please email me privately if you want Danielle. I'm a newbie too, not as knowledgeable as the others here, but a good listener.

Dana

Posted 4/18/2009 2:23 PM (GMT 0)
Hello Danielle As you can see I’m around the same age of your S.O. and I understand exactly how he is feeling right now.   I have gone through all of this very recently and I’m currently recovering from surgery.   I don’t know the particulars of your case but let me tell you about my experiences.   I had a slightly elevated psa (2.6) which led to a biopsy because it was slightly out of range for my age.   The biopsy showed 5% cancer in one core.   At first t I thought that seem really small, perhaps I could just watch it for a while.   After doing some research and talking to a lot of doctor I decided I have the best chance of recovering fully if I address this now.   There is no advantage to early dx if you don’t do anything about it.   So I did, found a doctor who has done a couple thousand of these surgeries in a high volume center.   My final pathology showed a tumor that was more than 50% of one lobe, far more than the biopsy showed.   As it turns out, the decision I made for treatment probably added many years to my life.   Funny, for me the anxiety and fear of the unknown leading up to the surgery were far worse than the surgery itself.   Trust me; I prepared myself for the worst. I may be an exceptional case but I’m here to tell you that the outcomes from these surgeries are not always bad.   I’m slightly three weeks out of surgery little over one week after the catheter and I’m very close to being dry, also ED is not an issue, everything is working fine. Your friend is young and that should work to his advantage.   The best thing you can do right now is look at all the options and make the decision that is right for you.   If you go with surgery, find the most experienced and skilled person you can.   I attribute my quick recovery to my age, very skilled doctor, being in good physical condition, and just plain old good fortune. I feel for you, I know where you’re at and it’s not a great place to be. Best of luck Steve
Posted 4/18/2009 2:49 PM (GMT 0)

Hello Danielle.  I would agree with my friends here - get a second opinion from a doctor you respect and have confidence in.  Then choose the treatment option that is right for you.  For some that is surgery and for others they choose somethingelse.  For me, surgery seemed the best option and that is what I did.  As others have said, age is a factor in how long it takes to recover.  I was fortunate to be dry 3 days after catheter removal and not have major issues with ED.  One other factor I would add at this point is that there is nothing wrong with taking meds to help things along.  That was a hurdle for me but I am glad I did and it works fine. 

Please continue to explore this site and all the good information.  Best wishes for a full recovery.  Your friend is a lucky man to have someone who cares for him.  David

Posted 4/18/2009 4:40 PM (GMT 0)
I agree with the posts above. I assume he is a single person like me. I could not have gone through my ordeal without my best friend. She even went to the doctor with me. You are great being there for him (trust me you being there probably means the world to him). Try to go to the follow-up doctor's appt with him. At the least, try to write down as many questions as possible before the visit and take a tape recorder if it would help to remember.

Again, stay there for him. I think I cratered 3 or 4 times but always had someone there to listen to me. It meant a lot to me.
Posted 4/18/2009 10:43 PM (GMT 0)
Hey Everyone,

Thanks for all the encouragement and offers of support. I'm sure I'll be back here again and again for information. (Hopefully later on to give back too like you are all doing now.) I appreciate the responses from rob2 and Steve to let me know you're same age range as my friend. Just curious if anyone has ever heard of photodynamic therapy and sonodynamic therapy? They're approved for other cancers in the US (esophagus and lungs) but not for prostate. A clinic in Australia called Opal was using a combo of the two for prostate but they've stopped (for reasons other than effectiveness so their website says). Just curious of anyone has the scoop on this 'alternative' treatment. Should I start a different thread for this subject?

Many thanks again.
Posted 4/20/2009 3:54 AM (GMT 0)
hello danielle.your friend has every right to be scared .however it isnt as bad as your mind makes it out to be ,im with tc if he lives in la area GO TO CITY OF HOPE i was 43 when dx im now 44     11 months post op .have NO incontinence issues and have great sex with  my wife as often as i want, what isnt usually mentioned is your friend is young  and that counts for alot, if you want to contact me by personal e mail feel free to do so, im more than satisfied with my tyreatment option of robotic sergery,,, have a wonderful night and hang in there your a great friend to someone .hope its appriciated .................................dirt

Posted 4/20/2009 5:00 AM (GMT 0)

Danielle,

You didn't raise the topic, but if your friend hasn't had kids, and hopes to, then he should make preparations for sperm storage before surgery.

As others have said, City of Hope in Duarte is great. Well, OK, it could be better, but the several other hospitals I've been to were nowhere near as good.

DJ

Posted 4/20/2009 1:33 PM (GMT 0)
Danielle , I know where you and your friend are coming from. I was recently diagnosed with PCa too and have been researching everything. I too am scared of the side effects of RP and many of the treatments. May I suggest a great book by Bob Marckini " You can beat prostate cancer and you don't need surgery to do it". I believe it is available at Amazon. I got mine from the University of Florida Proton Therapy Institute where I am planning on having treatments. Proton Beam has very little side effect compared to the other treatments and has the same success rate. Mr. Marckini's book is an excellent resource. He compares all the treatments and helps you make your own decission. It has been the hardest decission I have ever made and no matter the support from friends and family it all rests on the PCa patients shoulder. Good luck and keep optomistic.
Posted 4/24/2009 6:51 AM (GMT 0)
Thanks again everyone for the advice and encouragement. He's going to City of Hope sometime in the next couple of weeks for a 2nd opinion with an oncologist.

Good luck to you all and I'll see you on the 'board'.
Posted 4/25/2009 12:44 AM (GMT 0)
ZZZ,

Thanks for your response. You had said you had tons of information on the ultrasound -- since you're leaving town soon and he'll probably be coming to some conclusions before your return, would you mind sharing/sending any of the information you have so he and I can review it? Whether it's web links or otherwise. We'll all ears right now as we await a f/u appointment with his urologist and a 2nd opinion with an oncologist.

Thanks so much,
Danielle
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