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Posted 8/13/2013 7:58 PM (GMT -5)
Hi there- Jerry noted I hadn't posted an intro so decided to take the leap and introduce myself, at the same time request guidance!   I’m one of the wives, and have been following this forum for about 9 months.   I’ve learned a lot over the course of a short year, on a topic that we knew nothing about before 2012.   2012 was a hard year on my husband, he also lost his father to cancer; his father was diagnosed and passed away within 6 months.   Thank you all for your care and time sharing your experience and advice!   Wish this site wasn’t needed, that there was a cure- but really appreciate your willingness to provide comfort and knowledge!   Definitely this is a caring community!   Questions for those who have time and to provide advise/input/considerations: -       What should the next step(s) be -       Should my husband wait 3 months or seek out an oncologist for consult? -       His urologist indicated referral to an oncologist would be the next step, and did not say he should do this right away.   My husband indicates he’d like to wait 3 months for the next PSA, I’m not sure if it isn’t better to have a consult, and then decide on waiting versus considering a treatment, whatever that would be     History: Diagnosed in Spring of 2011, age 51, after having two PSA exams: Nov ’11 – 4.9, DRE – Neg April ’12 – 5.2, DRE – Neg June ’12 biopsy   PCa DX on 4/12 cores, Gleason 3+4 = 7   August ’12, RALP; path = pT3a, pNO EPE – present, extensive Margins involved, unifocal, anterior quadrant   At this time, quarterly PSA tests have been done, with the last two trending upwards:   09/19/12: < 0.1 12/26/12: < 0.1 04/10/13:   0.13 07/31-13:   0.20   I suppose this has been the same for many of you- we both thought having a biopsy wasn’t needed, were sure my husband’s elevated PSA was due to bicycling, he’s in good health and disciplined on diet, weighs the same as when we were married 25 years ago…   Then after surgery thought that would be the end of it.   Alas, it’s good to have positive thoughts, no other way!     Thank you one and all!   Strange how you can feel as if you know people through an online forum but that definitely happens.   You really can, the world is an amazing place!  
Posted 8/13/2013 8:06 PM (GMT -5)
Hello Runner Lady,

Welcome to HW PC, glad you made the plunge and joined us. What a pleasant introduction you wrote.

From looking at your husbands history, it looks like he has recurrence underway, and the usual course would be salvage radiation at this point. Salvage radiation works best if used before the PSA climbs too high. Some Radiation Oncologists would say at .50 or before, others would be wanting to do it at his current level of .20.

Probably a good idea to see a Medical Oncologist right away, to get his take on your husband's situation. He may very well agree, and advise your husband to see a good Radiation Oncologist, to start that process. It's also possible, that they might recommend doing both salvage radiation and hormone therapy at the same time. There are two schools of thoughts about that, some feel HT with the radiation is better, others feel that you do the radiation alone, and only had HT later if needed.

Please feel free to ask all the questions you desire. And if you need to vent, vent away, we can take it.

There are lots of wives here, so you should fit in fine.

Please let us know how he's doing and keep us updated.

David in SC
Posted 8/13/2013 8:07 PM (GMT -5)
you have a great attitude. That alone will help you guys through this.
Posted 8/13/2013 8:14 PM (GMT -5)
Thanks David Purg and Davidg - for the warm welcome and guidance :-)- he's getting ready for the best 4 (or is it 5) days in gaming (Gen Con, for board gaming geeks as they call themselves), and I'll share with him upon his return.
Posted 8/13/2013 8:21 PM (GMT -5)
I agree with Dave. Your husbands situation was not unlike mine. Post surgery my PSA's were <.01, ,.01, .07, .28 and .50. I saw medical oncologists and radiation oncologists when my PSA hit .28 and had SRT when it hit .5. I was told that studies have show that starting early, PSA below .5, and adding HT for some period of time greatly improves you chances of a cure or long term remission. IMO he shouldn't wait 3 months before taking to medical and radiation oncologists. BB
Posted 8/13/2013 8:25 PM (GMT -5)
Hi Runner lady...so nice to see the support for your husband. My wife has been great through this process and it's meant so much for me and I'm sure your husband feels the same way.

I would start moving now on your next steps. Not that the situation is even remotely dire, but you want to be playing offense instead of defense. Certainly a consult with an RO makes sense, but I'd also consider a medical oncologist. In particular, I'd urge you to see a medical oncologist that specializes in prostate cancer. When I did that, it gave me a completely new perspective on my disease and options. Suddenly, I was playing offense.

Of course, those specialists aren't on every street corner. My guy is Dr Lam here in Los Angeles, but there are others around the country. And if they're not close, many will do a phone consult.

As has been stated, your husband will do fine with the great attitude and support he has. Now I would just try and top that off by getting the best medical support you can. Good luck and welcome!
Posted 8/13/2013 9:56 PM (GMT -5)
I like the idea of talking to a medical oncologist fairly soon. Then he can wait for his next PSA in a couple of months and have a better idea what he is waiting to see. Most likely he will need to talk to a radiation oncologist, too, sooner or later, but that can probably wait for one more PSA to confirm the trend.
Posted 8/14/2013 1:05 AM (GMT -5)
Hi,

I agree with Purgatory and the others. He really needs to see an oncologist very soon. If there is a recurrence taking place (and it would seem this is very possible), the earlier salvage treatment begins the better his chances.

It would seem that his PSA is trending toward a quicker doubling time -- and this is nothing to fool around with.

As they say in this club, "You only get one shot at this." If recurrence is happening, he will have one shot at completing the cure, probably with salvage radiation.

Here's hoping for a GREAT outcome for him!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.
Posted 8/14/2013 4:32 AM (GMT -5)
Thanks BB, Michael, Peter, and Chuck-
Michael, your suggestion for a phone consult is an option hadn't thought of. We're in easy driving distance to St Louis, and Chicago so can look there as well. Not so certain of radiation oncologists here in the home town, no experience with them.

Your support, input and experience makes a huge difference, and I'll share with my husband Sunday after his trip - and he can make a next step decision.
Posted 8/14/2013 5:10 AM (GMT -5)
Welcome, RunnerLady. I'm another wife on the Forum.
You have received excellent advice. I'm definitely in the school of let's get on the offensive with this beast.
I would hope you do this so you are NEVER where my husband and I are right now.
Good luck - this is a great forum for support and answers.
Posted 8/14/2013 2:12 PM (GMT -5)
Thanks for the note and support, nhwife! Reading your signature line, what a difficult journey your husband's on, and that's an understatement. Needing to keep one step ahead of this cancer is so very hard.
Posted 8/14/2013 2:39 PM (GMT -5)
You have all ready been provided answers so will Welcome you and your husband.

I'm for years post Surgery also Gleason 7 and will be starting IMRT for my recurrance the last week of August.

If your husbands wants to chat just let me know since we are in the same boat!

Lewvino

Posted 8/14/2013 3:19 PM (GMT -5)
Thanks for the post, Lewvino and the welcome is appreciated!

Best wishes for success with IMRT!!! I'll pass your offer along to my husband to connect with you, I know that would make a difference.

Does your doctor have an estimate for how many / how long the IMRT will go?
Posted 8/14/2013 3:27 PM (GMT -5)
Hello Runner Lady and welcome.
Good to jump in and be involved as people are very responsive here. You are right in that it seems to be a vibrant, living community but I have never met anyone personally either but feel after 6.5 years that I know several people here. My husband has been lucky so far but we keep in touch as to be informed is the best thing. The guys and gals here have a lot of knowledge about all aspects of the 'what to do next' thing. Keep in touch and share your journey and although you will find differences of opinion here and there, it is always good to have input from those who have been there. I can't add anything but glad you joined us, and welcome once again. You and your hubby seem very fit! That is always a good thing which will help you both, no matter what you end up deciding. I always found it helpful to write everything down. I ended up with 3 folders which I recently gave to another lady with a hubby in same position as mine once was.
Good luck and feel most free to continue to ask questions and seek support here. Kind regards, Lana
Posted 8/14/2013 9:24 PM (GMT -5)
Welcome Runner Lady,
Agree with the advice above, but note too that there is lots hope and positive in your future. I like how many call it being on the offense. Keep us updated. You will get support from both sides of the fence. Some of us may be losing now, but we fought hard and ran the race and the goal has changed - I wish it hadn't, but we've been blessed many times over on this journey.
Posted 8/15/2013 6:36 AM (GMT -5)
Runner lady,
The doctor is looking at 38 treatments. 1x a day weekends off.

I'm anxiously awaiting the phone call that will tell me what time my first treatment will be at.
Posted 8/15/2013 7:37 AM (GMT -5)
Hello Runner, Please consider Proton Therapy. When I was at Jacksonville, Fl for my treatment there were a number of patients there for salvage radiation. May or may not be appropriate for you husband but it's another avenue to explore.
Posted 8/15/2013 8:08 AM (GMT -5)
Attack the beast!

A fellow gamer? Awesome! Xbox gamer here, RTS's. My wife used to laugh about it until one of my gamer buddies flew from Seattle to Ohio to visit with me the last 2 days before surgery. Now she is thankful.
Posted 8/15/2013 9:15 AM (GMT -5)
Runner Lady,

The suggestion to find a good medical oncologist as well as your uro/RO is one I would address sooner than later.

I say that because I made the decision to find one, but between getting initial visits scheduled, insurance verified, and finally getting an appointment took several months. At least in my area, allthough there are a lot of good oncologists, they are very busy.

I see the oncologist rarely, since he and my uro have similar ideas about my current situation, but when I do need him, I get in to see him in a few days, because the files are in place, and relationships established.

Posted 8/15/2013 9:25 AM (GMT -5)
Hello Runner Lady:

   This is another vote for seeing an oncologist soon. Let the Onco make the suggestions for when the next PSA should be. At this point, it would seem an oncologist rather than a urologist should be your primary cancer care doctor.

   Trust me ... your husband is lucky to have you by his side, and for being there to help him thru the wait and see periods of testing and treatments.

Best wishes to you both.

Rob

Posted 8/15/2013 4:58 PM (GMT -5)
Welcome Runner Lady. I wish you both well. Glad to see the wives on here in support.

Don
Posted 8/17/2013 12:21 PM (GMT -5)
As others have said, you should have a team of PCa professionals, not all from the same practice.

A urologist/surgeon or two. a radiation oncologist and a medical oncologist with the latter being the Quarterback of the team as MO is not predisposed to surgery or radiation. The more they are affiliated with a national cancer center the better.

Even though radiation is not on my short term horizon, until recently that was the weak spot on my team. The 2 urologists and the MO were all over relying on the CYA wording on the bone scans rather than looking at the scans themselves.

Do not accept vague wording like multiple thoracic bodies or right posterior ribs that do not quantify how many tumors. That was my lesson learned.

Had it not been for this site and another called Inspire.com, I would never have been accepted into UF & Shands Metastatic Disease program as all the non-radiation professionals over relied on the CYA wording on the bone scan report and assumed cancer was rampant in my bones, rather than what recent MRI referred to as mild metastatic disease, assuming there is such a thing.
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