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The doctor was right - it was cancer

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Posted 1/10/2013 4:16 PM (GMT 0)

After an agonizing week of waiting for the pathology report to come in - I almost feel a sense of relief. As a refresher, my GP gave me the news that I had cancer before a biopsy was done. With the holidays, it has taken much longer than normal to get the official diagnosis. Athough 5 days of waiting was because my biopsy samples got mislabled and nobody bothered to find out what was going on with them. It was my multiple daily calls that pushed them to action.

So here's what I know so far:

I lost 9 pounds during the 3 weeks of this ordeal - I am an overly anxious person. My wife is envious.

Sitting at the kitchen table telling my kids was pretty tough on all of us. I will definitely need to keep communication channels wide open to make sure they are OK.

6/12 cores on left lobe have cancer. For what ever reason, the cores were analyzed in pairs (although the cores had broken in the sample containers so there were actually 3 cores). So the top two base cores had 17%, the middle two 46%, the 2 apex <5%.

I had a hard nodule 8mm in size and I assume that was the 46%. I am trying to find out if the PA targeted the nodule during the biopsy or if they were just random samples.

Prostate size 23.5. PSA = 3.2

All were 3+3 = which made me feel better. The PA who called me with the results said it was T2a but I think she meant T2b. I've got to get that cleared up as well. The PA also indicated that they would not spare the left nerve if I chose surgery.

Although I haven't met with the oncologist I have been researching possible treatment options. I was hoping to have a while to think about what to do, but my hand may be forced as there is a possibility I may be layed off from work next month. I really can't do this without insurance.

I went to a support group meeting last night - I felt a bit odd being at least 10 years younger than the rest but it was a good experience. The variety of treatment outcomes was staggering - everything from working as normal to total failure of everything. For me, I have found this forum to be invaluable for knowledge and support. However, talking to someone face-to-face has really helped me tremendously as far as a calming down. I didn't think that would be the case before.

Now the mental debate gets into high gear about treatment options. Should they be appropriate, I have pretty much concluded to either go with brachy or surgery. I don't like the thought of losing half of my nerves with surgery but for some odd reason I feel more comfortable with surgery (still trying to figure this one out).

Even after reading the Grimm et al report - http://prostate-cancer.org/PDFs/Is14-2_p3-11.pdf I, for some reason, am not completely convinced brachy is the way to go. I just can't seem to accept the far superior results of brachy presented. Maybe the regurgitated info about surgery has convinced me otherwise. Maybe it is the fear of a reoccurance of cancer, the need to know the cancer is out and not spread, or the fear of radiation causing further problems 20 years down the road. This decision making process is the worst - I was bad at making big decisions before. Adding in the fear factor makes me useless now when making decsions as I tend to over-analyze everything. 

Thanks to everybody on this forum. Your posts provide great comfort, support, and invaluable information. Should you have suggestions how to best proceed on this journey I am all ears - especially regarding treatment options. I sure wish there was a little program to run which would give us the treatment which provides the overall best outcome. It worries me to no end that I will make a decision I will regret.....aaaaarrrrgggghhhh

All the best

Posted 1/10/2013 5:10 PM (GMT 0)
Tough spot re: getting laid off and having to force a decision based on that. Can you get COBRA? It is expensive but maybe an option? That way you'd have a little less pressure (maybe). I went through a similar thing back in 2003: layoffs coming fast and furious and me on an expensive medical treatment. It didn't turn out as I feared and I was able to hang onto the job during the treatment.

I'm in a situation somewhat like yours in that I am debating brachy vs. robotic surgery and so far I am leaning toward brachy (although this changes about 500 times a day).

Good luck.
Posted 1/10/2013 6:13 PM (GMT 0)
Unless you work for a very small company, you are most likely eligible for COBRA. Most people are. It is more expensive because you pay both your own, normal, contribution plus whatever your employer was paying on your behalf. Whatever that amounts to, it's obviously far less than paying for PCa treatment yourself ...

http://www.dol.gov/ebsa/faqs/faq-consumer-cobra.html#.UO8D6eQ0WSo
Posted 1/10/2013 6:16 PM (GMT 0)
I'll start looking into the COBRA option. If it is available I think it will cost me about $1600 month(includes family). Although I can't afford that much I probably can't afford not to have it. Just another thing to worry about.

So what is your opinion on brachy versus surgery for a 52 year old. I have been reading with interest the thread on the brachy vs surgery subject but am wondering how age plays a factor in all of this. Do you have any ideas? Like you, I feel like a a fish out of water just flipping and flopping between options.

Thanks
Posted 1/10/2013 7:45 PM (GMT 0)
Dear Mr...the brachy vs. surgery thread is timely for you and should provide you with valuable perspective.  The age question can be debated endlessly also and there is no easy answer.  Our friend Yoop, who recently opted for brachy, makes a good case that the younger you are are better reason to choose brachy since you have more years left to live with potential SE's from surgery.  Others will make the case that younger guys tend to heal/recover better from surgery so go for it while you are young.  Personally, I like Yoop's take but that's just me.

In any case you should definitely meet with first class surgeons and first class brachytherapists to get a close-up view of your disease and understand your options.

Good luck,

Jim

Posted 1/10/2013 7:57 PM (GMT 0)
Mr Anx - I too will welcome you, as you've already seen you've come to a good place with LOTS of guys (and gals) that will provide you with unbelievable help, support and experience.

As you've probably already come to see, I am one of the "Brachy" guys; as Tud/Jim indicated above after my exhaustive research into the treatment options I felt that was the best route for me. HOWEVER, this is an incredibly personal decision - and likely one of the most important ones you're likely to make in your lifetime, so I pledged to not "push" my opinion for treatment - but rather just try to be a source of information on Brachy as one option.

Would you mind sharing your age with us? It would also be helpful to setup the "signature" part of your profile so that we can get a better idea of all of your PCa stats - check out most of our posts out here to see what the signatures look like on the bottom of each post. One of the first questions many will pose to you is have you gotten a 2nd read on your biopsy slides yet? Labs such as Bostwick and Epstein are two of the best and a 2nd opinion is usually a good thing to add to your bucket of information.

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 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.

I would also second Tud's input to meet with as many of the medical experts in the different treatment approaches as you can. When you do, 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.

I know that at this point it is all a bit mind-numbing for you - but trust me, "this too shall pass!" Stay with us, we're all here to help you with your own journey.

Peace, and best to you.
Posted 1/10/2013 8:03 PM (GMT 0)
was hoping your biopsy would come back negative, however, good news on the gleason 6 part. with those percentages of cancer, you will need a primary treatment. you have a small prostate btw, one of the smaller ones i have seen reported.

my left nerve bundles were removed during surgery, the right side was suppose to be removed but they couldnt due to surgical difficulties, they were marked as "damaged". good news, was one of the lucky ones and have zero ED problems right from the start. so it doesn't always mean you will be guaranteed of having ED, it varies so much from guy to guy

david
Posted 1/11/2013 4:48 PM (GMT 0)

I apologize for not responding sooner to your comments. I reached my limit of cancer stuff for the day - I couldn't deal with it any more. I'm too physically and emotionally exhausted.


A Yooper...... I am 52. I also have Dr Walsh's book on hold at the library.


I am not sure about spending money on getting a second opinion on my biopsy. Will it make a difference in treatment options for me at this point. I can't even decide squat right now. As mentioned, I have only been able get down to the surgery/brachy treatment and am now at a stand still. The associated thread is very timely for me but it still has not persuaded me to jump off the fence in either direction. BTW, there is a physical /biological reason why decisions are extremely difficult for me to make. And, I will forever doubt or second guess my decision. Bringing that up opens up an entire discussion which would be a distraction. If anybody is curious, just email me and I will try and concisely explain.


I have scheduled my consultations with a surgeon and radiation oncologist in 2 weeks. I have started to make a list of questions to ask. I'm not even sure what to ask them other than how many of these procedures have you done and what is the outcome (including the definition of success). Has anyone compiled a good list - if so I must have missed it in my search.


I might add the surgeon I have selected (if I choose surgery) has done over 1000 RP with over 400 via daVinci. I feel pretty confident in him. He was also recommended in the support group I attended. I am not so confident about finding a superior radiation oncologist to do brachytherapy.

I read that I shouldn't necessarily be concerned with having to think about salvage therapies should the primary treatment fail. However, seeing men such as Purgatory needing a second treatment option haunts me. Which primary treatment has the most successful secondary treatments. I suspect that would be surgery but really do not know - any thoughts?

Thanks again for your comments and thoughts.

Posted 1/11/2013 4:56 PM (GMT 0)
Can't imagine dealing with cancer without insurance..get cobra, even if only for yourself...
Posted 1/11/2013 5:28 PM (GMT 0)
MrAnx - if you want to send an e-mail to me I can reply with a list of questions for both the surgeon and the radiologist. I also know there are other guys out here who have excellent lists as well and hopefully they too will chime in.
Posted 1/11/2013 5:54 PM (GMT 0)
A Yooper - you should post your list to HW where everyone can benefit.
Posted 1/11/2013 10:35 PM (GMT 0)
MrAnxious, I know where you are coming from regarding insurance coverage. Three years ago on January 6, 2010 I had robotic surgery for removal of my prostate because of cancer. I was diagnosed with cancer in October of 2009 and lost my job in November of 2009 due to a plant closing so I can understand your concerns very well. If you would like to discuss the COBRA route, just send me an e-mail, my address is listed in my profile.
Posted 1/12/2013 1:46 AM (GMT 0)
I believe it's the law that you have to be offered COBRA for up to 18 months. You may have some options. For example, if others in your family are in good health, it may be cheaper to get them private insurance than to keep them on COBRA but you can keep yourself on COBRA. Just be careful of the timing; you have make the COBRA decision by a specific date (I think it is 60 days but it may have changed) and if you miss the deadline by as little as one day you can no longer get COBRA. That would suck in a major way!

If you have a capsule-confined gleason 6 cancer it may not make much difference which of the treatments you select from the standpoint of controlling the cancer. But there are three other issues consider. First, the profile of side effects is different. With radiation side effects are likely to be minimal at first, but may develop with time -- and you are young and presumably in good health otherwise. With surgery you'll get hit hard with side effects at the outset most likely but at a young age and with nerve sparing surgery the odds are you will recover most of your functionality with time. The second issue is "second chances". You can do salvage radiation after surgery, but only a few docs will do salvage surgery after radiation. The third issue is knowledge, and this might matter a lot if you are the worrying type. If you get surgery, they do a detailed exampination of the prostate after removal and know exactly how much cancer you have and how aggressive it is. about a third of the time Gleason scores after prostatectomy don't match gleason scores from the biopsy. With radiation you never get a specimen to examine so you have less information in hand for making further decision making. So it is hard to say which is an objectively better decision; it is more realistic to approach it is as "which the decision that gives you, as a unique individual, more comfort and peace of mind."
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