The uncertainty of it all

Hello everyone, I've been reading here for the last several weeks, and appreciate the information that has been provided by so many. I'm 47, and was diagnosed in July, and like everyone else, it came as a complete surprise.

My doctor of nearly 30 years retired in Jan 2013, and so my last physical with him was Nov 2012. I decided to stay with the new doctor and see if I felt comfortable with him. He spent time getting to know me on my first visit last November, and there was no pressure or time limit, which I found refreshing. He asked my my former doctor had discussed my PSA with me, to which I answered no. He also inquired about whether or not DRE's had been performed, which they had ever since age 35, and I was always told that things felt normal. He went on to inform me that my PSA was trending up, especially in the last couple of years. 2.4, 2.8, in that neighborhood anyway. Regardless I was taken back at this news. He performed a DRE, and indicated he did not feel anything unusual either.

A week later I get my results with a note that it had gone to 3.2, and that depending on my level of worry that I could speak with a urologist, or recheck in six months. He indicated he felt okay with a recheck so May finds me back in for another test. I took these several months to educate myself somewhat on the topic, and being someone that rides a airdyne stationary bike 10 miles a day, six days a week, made the decision to not ride four days before my retest. I was convinced this was the reason for the change, I was wrong. My PSA came back in the upper 4's, and so he sent it out to another lab which showed it even higher, total PSA in the lower 5's with a free PSA of 11. At his suggestion I went to a nearby Urology group, and actually saw a younger, and newer member of the group who had replaced a senior member a year or so prior.

After the most thorough DRE I have ever experienced, he indicated he felt a small firm spot on the left, and immediately recommended a biopsy, but indicated he would do what I was comfortable with, that it may be nothing. I was going through implant surgery, and so I elected to wait a month and have another PSA test. It came back at 3.5, with a free PSA of 10, he did indicate the free was generally looked at with PSA results greater than 4, but that it was concerning still due to my age, and that he could feel something. Needless to say, I agreed to the biopsy.

12 core biopsy results
Left lateral 85%
left apex 5%
right apex 2%

All G6

I've been extremely stressed for the last several weeks, and early on while waiting on the biopsy result was having huge emotional swings from I'm fine, to anxiety and near panic attacks. He indicated that the CT scan showed one isolated area, the one he felt, and I've since had two sit downs with him and my wife to go over the different treatment options. He indicates that I am a candidate for watchful waiting, and as long as I a not someone that worries excessively, he doesn't see any problem with that approach. I am not that guy, I worry excessively. He also indicates that at my age, no previous surgery in the abdomen area, that I am a prime candidate for surgery, with the best odds or recovery, and that if I want to proceed in that direction, he has no trouble recommending it.

I've tentatively scheduled surgery for Oct 8th, and I'm getting a second opinion from another urologist on the 27 th, in order to remove any doubt, and save myself from future "what if's".

It's almost as if as soon as I got the word that it was a small area, and shows no indication that it has metastasized , that my family and friends understand why I'm still stressed. "Get it out while it's curable and move on with life", seems to be the consensus. I don't fault them for thinking this way, it's simply their ignorance showing, because it most certainly is not that easy. My wife even feels this way, and it has not been healthy for our relationship.

Anyway, if you've stuck with me this far, I apologize for the long winded post, but I need to vent, and to vent to those who know how it feels.

Post Edited (thurman) : 8/20/2014 10:18:22 AM (GMT-6)

Sorry your here but know that there are some wise and experienced people who are worth listening to. Consider the following:
1. Second opinion on biopsy; Epstien @ Johns Hopkins
2. Consider talking to a Radiation Oncologist about EBRT or Brachy Thearapy
3. Find and talk to others who have been through this
4. You have time, because of your stats to research all treatments including active surveillance!
5. You are your best advocate!

Others with very large brains will follow. I wish you well and peace.

Between the "worries" and the 85% cancer in one of the cores I would think that AS is not for you. However, all other options are available. Take your time and talk to an Oncologist. Also a second opinion on your biopsy is a good idea. Good luck

browntrout said...
Sorry your here but know that there are some wise and experienced people who are worth listening to. Consider the following:
1. Second opinion on biopsy; Epstien @ Johns Hopkins
2. Consider talking to a Radiation Oncologist about EBRT or Brachy Thearapy ( let me add: and/or Brachy... IOW both maybe)
3. Find and talk to others who have been through this
4. You have time, because of your stats to research all treatments including active surveillance!
5. You are your best advocate!

Others with very large brains will follow. I wish you well and peace.

Thurman, sorry you have had to join us in this world of uncertainty, a world of many a between a rock and a hard place, but glad you found us. The uncertainty of it all is what adds a lot of stress to the already stressful.

But key in on the above where BT says " You have time ". Because it's like they say over at Prostercision(sp?): "You have one chance to get this right". Of course, what is right for a given individual can be highly debatable. But the best news going for you is that, unless the Bx managed to miss some more aggressive PC(and there is no way to ever know that, and no real reason to assume that they did), you have plenty of time! There is no rush with those G6s, and opinion seems to be that G6s don't grow up to be G9s. And you should certainly consider not yet doing anything that can't be undone, in the form of active surveillance while you figure things out. While this PC is nothing but bad news, you might consider those G6's you have as a blessing. Lot's of folks never get past the word "cancer", never hear anything after that, and all they can think is "get it out of there". But you need to know that there is a huge difference in G6 and G8-10 as far as danger of it spreading and actually dieing from it. You actually are unlikely to die from these G6s even if you do nothing, although you do have a long life expectancy for it to work against you. But it is very unlikely to do that damage quickly. So don't let your anxiety rush you into anything.

Research and find out the relative cure rates of any given treatments and then weigh those difference against the relative differences in likely side effects. You are most likely going to live through the PC diagnoses. It is the side effects of treatment that will be with you for those long years, so slow down and study carefully.

There are so many "On the Other Hands", including your age, when it come to the pros and cons of various treatments, their relative success and side effects, that I am not going to go there right now. But you have time to research them all and make your decision in a calm manner.

Hi Thurman,
I can completely relate to the array of emotions that you are feeling. It's all very natural and once you have made up your mind on what treatment option you choose, you will feel much better. Surgery is a really big deal and you will need to search within yourself to determine if this is the best course for you. Sure, if the cancer is organ confined, then surgery will remove it and life will go on. There are some side effects from surgery that you need to consider, especially if having an active sexual life is still important to you. First you need to understand that you will no longer ejaculate. Not even a little. Second, ED is a real big concern. If having an intimate relationship with your significant other is important then you really need to think about this hard. No pun intended. Doctor's cannot guarantee that you will be able to get it up. May take a little time, May take a long time. May never happen. Yes, there are options for that but for me, its not too appealing. I had surgery this past February and I really miss having an intimate relationship with my wife. Best of luck to you in whatever you choose but please remember to think about what is really important in your life. For me it was living and I was willing to give up everything else. Now Im having second thoughts.

Oh, and one last thing. No one gets how you feel. There will be a lot of well intentioned "I know how you feel" but no one understands what you are going through.

Thanks for the input guys! As I mentioned, I've been doing a great deal of reading here, and realize that many of you have been faced with a much more challenging situation than I have been currently been diagnosed with. Due to this I was somewhat hesitant to post, but in the end did so knowing I would get some good reinforcement from this community.

@ Michael_T - My urologist told me that there was almost no chance this had occurred, but that it was always good to be sure. I probably would have been more comfortable had it worded it as you did.

My urologist put the Dr. Walsh book in my hands as I was leaving the day I was diagnosed. I must admit that reading this, while waiting for the biopsy, then CT scan results is when I seemed to stress the most. I knew back in May when my free PSA came back at 11, that it was a bad sign, and the book presents it as sometimes a particularity bad sign in some cases. If there is one thing I've learned over the last several months, is a lot of this varies from person to person, and what the test results indicate for one, aren't necessarily the same for the next guy. This is what I find so frustrating, something my wife indicates is a byproduct of OCD.

I have gotten some other non affiliated professional opinions, two from Dentists, and another from a Cardiologist, who are friends at a professional level with my wife, and I am also meeting with my primary care physician next week for the first time since diagnosis, so I'll seek his input as well. So far they all have leaned toward surgery, not because they don't understand the risks, but because they feel it's the most likely to have the best possible outcome for a cure. While I know everyone understands the risks, it's just not the same if your not the one at risk, but I admit that I find myself leaning that way too. sierraluvr's comments are weighing heavy on my mind these days, for certain. I'd rather have other options to fall back on in the event the surgery wasn't a cure, but I can't imagine losing intimacy with my wife.

I don't know if this would be considered unusual, but my main reason for wanting to meet with my PCP is to get something I can have for anxiety on a PRN basis. As much as I dislike medication, I find myself needing something to calm me down from time to time here recently. I own him a big thanks too for bring this to my attention!

Thank you again for your thoughts and suggestions!

Thurman,

The G6 Conundrum, My biopsy was resulted as G6, 10 of 12 cores, Postoperative I was the esteemed recipient of a 4+3=7 pathological diagnosis. (later confirmed)

The most important recommendation that I can make is to receive a comprehensive evaluation at a National Cancer Institute.  While I feel community hospitals are the backbone of medicine for most of the country and provide excellent care, a reason does exist that specific academic hospital systems are designated as comprehensive care centers. After having that evaluation with recommendations, you can choose to have your care wherever you feel most comfortable.  I chose a National Cancer Center for my surgery and my brother (47) at the time had his surgery done by the same young physician.  We both have had excellent results.

Regards

Hero

Consider talking to a Radiation Oncologist about EBRT or Brachy Thearapy

I strongly agree with the browntrout. Many around me (especially my original urologist) was of the 'get it out now' school of thought. I am very happy that I met with an oncologist who thoroughly explained all of my options including the one that I eventually chose: LDR brachy. That consultation was a game changer. I hope you too will thoroughly explore your options.

Thurman, with all due respect to the dentists and cardiologists who have given your advice...they may or may not know squat about prostate cancer. Even with my pea brain's worth of knowledge I have been able to educate two PCP's about this disease WAY beyond what they learned in medical school.

Please take the time to talk with different practitioners who can discuss the different options in a knowledgeable manner. Yeah, surgery might still be your final choice but at least you won't have any regrets about a lazy approach to decision making. As an example, you said you would like to have options to fall back on if surgery doesn't cure you. Do you know that there are equally efficient back up options for a failed radiation treatment? It's just that you probably need to talk with a RO or Brachytherapist to understand those options.

Good luck,

Jim

You can put your stats in the MSK nomogram to help with you understand the odds/chances for your different options. Sorry to hear this at the young age of 47.

Actually, Jim, surprisingly from what I've read on HW, very few men regret their decision. But, then again, most men who post here have considered a variety of options.

Certainly, it is a good idea to speak with a surgical specialist, a radiation expert, and a medical oncologist who specialuzes in PC.

Mel

Tudpock18,

I simply took what you said the wrong way, because I was looking at it in a very generalized manner. Your approach is very logical, and I appreciate your input very much.

Thanks,

Todd

Thurman, I'd also like to refer you to this excellent thread started by member HCV which may be helpful to you:

Jim

www.healingwell.com/community/default.aspx?f=35&m=3164828