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Cancer: Prostate Message Board
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Old 06-18-2012, 08:43 PM   #1
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I'm so scared

At about 5:00PM today, my husband & I were told he has prostate cancer. He is 52, in very good health otherwise. Out of the 12 samples, 2 showed cancer. One sample was given a 3+3, the other a 3+4. His psa was 4.3. The doctor spoke at length about everything from what and where the prostate is, diagrams & everything through to the treatment options and their risks. Of course my brain is racing. I've been trying to read all I can to educate myself on as much as possible tonight. But right now I'm just so scared and so sad. How do we know which treatment to choose? Do we get a second opinion? I hate that he has to go through this. I want them to take it all out tomorrow. I know I have to get a grip, but I am panicking. I want to be positive and strong but I'm crumbling right now. It's almost midnight & I'm exhausted. My husband is asleep, which is amazing to me, but I'm glad he can. I on the other hand cant stop my brain. Don't know what to do. I can't even pray. Why can't I pray?

 
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Old 06-18-2012, 09:04 PM   #2
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Re: I'm so scared

Lizcap,
It's always a shock to be diagnosed even if you are expecting it but it's important to take charge of your treatment. Investigate all the treatments and make sure that Proton Therapy is one of them. I was treated at Loma Linda and recommend you visit their website and check out their Proton support group which sends out a very informative newsletter. MD Anderson also has an excellent support group.
Bob

 
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Old 06-18-2012, 10:10 PM   #3
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Re: I'm so scared

Hi, Lizcap, I agree with Harpman ...to encourage your husband...after he finishes his nap...to check out multiple sources of help. If you are thinking of prayer as a source to help the two of you with your search...you are probably already receiving some spiritual benefit from your thoughts--even if stress is blocking the words. ...AND you have the positive thoughts from Harpman, me and others on this blog.
Your doctor has caught this early. Not all doctors detect prostate cancer in 52 year old men...even with a PSA that is a bit elevated (some doctors don't even do PSAs at that age). 3+3 is lower than many men have whose wives face the anxiety that is hitting you. 3+4 is better than 4+3. So you may be reviewing a variety of courses which would have good outcomes. Surgery ...as you mentioned ...has some appeal. General Norman Schwartzkopf (Desert Storm general) said he liked knowing all his cancer was "in a jar" on his surgeon's desk. Senator John Kerry and the Emperor of Japan chose surgery. It seems some doctors tend to recommend that your men in their 50s. It was my urologists suggestion for me (73 yo at the time). It seems to me (only a layman...who just did a little research for my prostate...and the prostates of a few friends & family) that doctors tend to recommend the same treatment for all patients. I talked to one expert (at the Irvine, Calif Center) who seemed to differentiate. So...my point...have your husband take some time reading. He will know where to go and what to ask when he gets there.
What did his doctor suggest? If he finds a radiation guy ...like the fellow in Irvine..your husband would not need to know as much about the benefits and risks of seeds (brachytherapy) vs external beam. I guess there are lots of very precise radiation techniques now...with all kinds of confusing letters...IMRT...and SBRT (only 5 treatments)... Proton therapy ...which helped your other friend on the blog...claims to be able to use a stronger dose...since its main thrust does not start until it gets to the tumor...and reportedly ends when it leaves the target. ...thus....allegedly (in the marketing CD..) little damage to nearby healthy tissue. After years with Loma Linda being the main place for proton therapy for prostate cancer, they are springing up in several spots (it is a HUGE expensive machine that takes a couple years to get going). It takes several sessions...only 5 minutes each time...painless treatment....but several sessions (I had 45). I commuted. I thinks some sites...like Loma Linda ...Jacksonville...try to help patients find housing for a couple months...and promise such a minimum of side effects that it qualifies as a "radiation vacation." I picked it because I was guessing it was the best chance for survival. Your husband is going to make a good decision...with your help. Get some rest.
Dale

 
Old 06-19-2012, 05:33 AM   #4
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Re: I'm so scared

Hello Liz and welcome to the Board!

Okay, I know this is the last place you would have wanted to visit a few days ago, but that is true for all of us before diagnosis. I'll echo what Bob and Dale have said: being diagnosed or having your husband diagnosed is a shock and sends most of us into an emotional and mental tailspin. It seems like cancer is going to occupy your life fully and forever, and that there is nothing you can do. However, that is not the case, and you have already recovered enough to visit this site. Good for you! And good for your husband in getting a good sleep!

Here are a few brief thoughts, and I hope those of us on the Board will be able to help further.

First, it is important for you and your husband to know that, due to advances in testing, knowledge and treatments, prostate cancer has the longest survival for any of the major cancers. Survival for low- and intermediate-risk men is virtually 100% at the ten year point, with even men with high-risk cases surviving at a rate of 95% at that point. Of course the vast majority of us will enjoy many more years beyond that, and very few of us will die from prostate cancer. While this is great news, our long typical survival - typically outliving the disease - places a big premium on chosing therapy wisely to minimize side effects. I'm convinced that is best done when the patient (and supporters like you) have become empowered.

There are a number of fine resources about prostate cancer to help orient new patients. Here is a great recent book to start: "Invasion of the Prostate Snatchers - No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency," by Ralph H. Blum and Mark Scholz, MD. The authors are not against treatment, just against unnecessary treatment. The medical co-author is closely associated with the Prostate Cancer Research Institute which has many resources for patients that are readily available.

It's very important to get that Gleason score reviewed as Gleasons are often mis-rated by general pathologists who do not specialize in prostate cancer. If it is really a 3+3 in both cores, that opens the prospect of active surveillance. On the other hand, a 4+4 would make some therapies a long bet while pointing toward others.

It is important, after you both have gotten oriented a bit, to get second, third, fourth, fifth opinions - whatever it takes until you feel right. That's par for the course with prostate cancer. Your feeling that you want to "get it out tomorrow" is quite normal. However, these days surgery is clearly no better than well done radiation and a lot more invasive. It's important to understand the differences in side effects and how those differences fit your husband's case and your lives. These days there is no premium for surgery for younger men - radiation is as good long term. Dale and Bob have mentioned proton therapy. An apparently equally effective therapy is Intensity Modulated Radiation Therapy (IMRT that Dale mentioned) with Image Guidance (IGRT that Dale mentioned). However, radioactive seed implant by an expert may be the best of all if the cancer is truly just in the prostate. You both have time to figure out what is right for you.

One prominent medical oncologist likes to remind us that a diagnosis of prostate cancer is like the canary dying in the coal mine: it is a sign that things are not right. It's important to check our overall health when we get diagnosed. For example, heart health is usually a much more important threat to us prostate cancer patients than the cancer itself. Being diagnosed is often a vital motivator to get serious about doing the right things for ourselves.

Take care and keep your spirits up,

Jim

 
Old 06-19-2012, 08:49 AM   #5
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Re: I'm so scared

Thank you so much Bob for your support and suggestions. I will look into Proton Therapy and Loma Linda. A support group sounds good to me right about now. We have no experience with any of this, even remotely. But I am going to do as you suggest and educate myself. Last night I was feeling sorry for myself, for us. I've got to take the bull by the horns here and help my husband. Thank you again, so, so much!

 
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Old 06-19-2012, 09:05 AM   #6
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Re: I'm so scared

Thank you Dale! The positive thoughts and kind words are wonderful to read. How sweet you people are! I believe you are right about us knowing where to go and what to ask when we get there. It felt good to read that. My husband and I are both educated, intelligent people. We can handle this, right?.After reading your reply I am very eager to go do my research. You and Bob have given me my starting points. I feel like I have a lot of work to do, but your words have inspired me. And I don't feel so alone as I did last night. This forum is such a wonderful thing! Thank you again, Dale!!!

 
Old 06-19-2012, 09:40 AM   #7
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Re: I'm so scared

Jim, thank you so, so much! I keep reading your words over and over again. They make me feel so hopeful and safe.

I am going to get "Invasion of the Prostate Snatchers" I am also very focused on what you said about second opinions.My husband was saying yesterday he doesn't want to get a second opinion and that he trusts this guy we have now. But I feel in my gut we should go the second opinion route. So your thoughts about that resinates with me and I am going to tell David (my husband) what you said.

My thought about "getting it out tomorrow" is typical me. I tend to have knee jerk reactions to things. Im somewhat impulsive. David on the other hand is quite the opposite. He tends to do tons of research, think about it, talk about it, then think about it some more. I guess we have to meet somewhere in the middle and do what we have to do to get this taken care of. Can't help thinking I wish we could fast forward all of this and be done done with it and everything be great once again. i'm a bit of a dreamer too.

So, I'll keep you posted on what we decided. Thank you Jim! Truly!!! God bless you.
Liz

 
Old 06-19-2012, 05:04 PM   #8
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Re: I'm so scared

Reluctance to get a second opinion

Hi again Liz,

In post #7 you wrote:

Quote:
Originally Posted by Lizcap View Post
... My husband was saying yesterday he doesn't want to get a second opinion and that he trusts this guy we have now. But I feel in my gut we should go the second opinion route. So your thoughts about that resinates with me and I am going to tell David (my husband) what you said....
So many of us have had the same feelings your husband is now having. I definitely include myself in that group. We really want to be able to trust the doctor we first see and also to believe that he or she is an expert.

In my own case, the doctor made an extra effort to fit me into his schedule first thing in the morning following the day I got my PSA back at 113.6. I appreciated that, but our relationship went down hill from there, even though I had a hard time realizing that at the time.

He had a bad cold, and during my appointment he was interrupted by phone calls perhaps a dozen times. Even before the biopsy, that high PSA and a "rock hard" prostate indicated a challenging case. However, my wife said later that the doctor lamented, when I was out of the room, that he wished he could have seen me sooner because he could have helped. His comment depressed her, but she did not share it at the time as she did not want to further discourage me. The biopsy was a few days later and apparently the doctor did a good job. He then left for a scheduled vacation to Asia (late December), and planned to see me right after his return. However, when I tried to contact his office for data I needed for a second opinion, his staff was evasive and barely cooperative.

Still, with all that, I felt loyalty to him along with dissatisfaction. I wrote up a detailed list of pros and cons. That helped me make up my mind. Fortunately, I got a good lead to another urologist from a friend in church, and I never saw the first doctor again.

I hope you both have a better course. Of course it would be best if you both can maintain a good relationship with the first doctor, whatever happens. However, prostate cancer technology is so complex that one doctor cannot master it all, or even master much beyond the basics for areas outside his area of specialization, to say nothing of overcoming biases. That's one of the reasons it is so important to get opinions from doctors who offer different therapies or case management approaches. My new urologist ended up referring me to a medical oncologist when we both realized I needed more expertise in drug based therapy, and the oncologist is the one who has managed my care for the past twelve years.

Take care,

Jim

 
Old 10-21-2012, 05:34 PM   #9
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Re: I'm so scared

Hang in there I know how you feel. I am 53 and was just diagnosed in September my numbers are similar to your husband. Have you two made a decision yet? After a great deal of research I have decided to go with Proton treatment.

At first I tried to keep my research away from my wife which I found out was a bad idea. I now keep her informed about everything, she was instrumental in all my research,so hang in the with him and be supportive.

 
Old 10-21-2012, 07:02 PM   #10
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Re: I'm so scared

Hi, Phoenix, Your offering Liz and
David some support is probably very helpful. Some of us on the board have difficulty remembering the early 50s....(referring to our 20+ years ago...and to the 1950s). I suppose Liz and David have received effective help and are offering suggestions to couples facing anxious decisions...like the ones they faced four months ago. If they are still checking this thread, I hope they will let us know how they are doing.
Perhaps you will give others the benefit of your research, your wife's help and your upcoming successful experience. Your handle does not give a location. Which proton center are you considering? I was lucky enough to be within commuting distance to Loma Linda, the grandfather of the sites. I see there is a center in Somerset, NJ, but I don't know if that was chosen by David. He and Liz are very bright and did lots of research...so they have EARNED a good outcome. They said they backed up the research with a little prayer to ensure they would take the path to optimum health. Thanks to you for cheering them on in their current phase. Dale

 
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