Rant and SRT query

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Veteran Member

Date Joined Nov 2009
Total Posts : 7269
   Posted 9/23/2010 9:46 AM (GMT -6)   
Folks, it looks like SRT will be the next step for me in this journey. I have been so bummed out/depressed about this. My fear is that I have the aggressive cancer (that last PSA triple reading sure shook me up). I also have been having significant tailbone pain since 6 weeks post-op. When I asked Ford about that a few months ago, they assured me that it would not be the PC (those symptoms supposedly do not occur for a LONG time if ever and the PSA would be sky high). Still I wonder. Last night, I did not sleep at all. I was tossing and turning, all upset, and I shed some tears too. That is not good as I have a long day at work (taking another professor's class) and an evening thing too. I am tired. I am also hoping to get in to see a medical oncologist at Umich, but it is difficult to work with them on scheduling due to some blips (I saw their team before, but not a medical oncologist and their scheduler does not know how to classify me--new patient or not--it's a hassle right now). Anyway, I am currently depressed. Thank goodness I am still working as I still love the job and manage to leave my troubles at the door (although I am writing this while giving a test now!).
Regardless, the pity party needs to end quickly. I still have a 3-month reprieve in a sense.
But I will be seeing a local radiation expert who is supposed to be excellent (according to my friend who is a doctor in town). I would like to start gathering information to formulate questions to ask. Here are some, but I need help in thinking of some others. This sure feels like starting all over again with this disease!
So, folks, can you possibly answer some of these questions (I'll still ask them) and also suggest other questions to ask.
1) What can I expect (ie: procedural stuff). How much radiation? Schedule.
2) I plan to teach from 9:30-12:30 straight every day. Can I do this and get the radiation each day in the late afternoon? I ask this in the context of logistics and fatigue.
3) What side effects should I expect (I sometimes have constipation problems and I do have hemmorhoids that rarely bother me).
4) Is your equipment the same as Umich? Is there a medical advantage having it done at Umich. Is it feasible/worthwhile to have Umich do the settings or would that not make sense do to calibration issues?
5) What are my chances of a cure, given my stats?
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06

James C.
Veteran Member

Date Joined Aug 2007
Total Posts : 4463
   Posted 9/23/2010 10:52 AM (GMT -6)   
Mel, I think that, like me, your first question should be,

'what is your criteria for determining BCR? "
Followed by "Have I gotten enough test result rises to justify/qualify me for SRT at this point?"
"How many rises and at what point do you consider that I need radiation and/or hormone treatment?'
"What do you base that decision on? Any cites, studies, etc?'
"Will the hospital and/or my insurance allow and pay for early treatment"
"What schedule should I be getting tested now, what degree of sensitivity should the test be?"

You asked, and I must be honest with you since you did, but I think you are probably about 6 months to a year premature to deciding you have BCR and there's no need to start planning your funeral yet. (Lame attempt at a joke to lighten things up). I suspect you will find it hard to get any doctor or hospital to begin SRT with just the data you have at present, although the positive margin does carry some weight. I understand the worry and panic that can set in, as I am living the same thing now, but you-and I - need to try to take deep breath's, spend the next few months preparing and getting questions answered and knowing, with preplanning what and when the trigger will be pulled on SRT.

I can't offer anything but my thoughts and prayers for you and hope you can find some way of beating back the panic and depression. Things aren't nearly as bad as our wildest imagination can make them. I'm sure other guys will say the same thing in different ways, so I hope you can take what we tell you and find comfort and reassurance in it.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh
ED continues: Bimix .30cc & Trimix .15cc PRN

Post Edited (James C.) : 9/23/2010 10:08:11 AM (GMT-6)

Regular Member

Date Joined Feb 2010
Total Posts : 308
   Posted 9/23/2010 5:04 PM (GMT 0)   
i'll share my experience later, but my main comment now is why are you so sure about SRT ?
i was under the impression that most docs use a threshold in the area of 0.2-0.25 , and   i started my RT when PSA had gone from 0.3 to 0.4
i'd LOVE to have numbers like 0.06  !!!
i'd recommend assuming NOTHING, and enjoying the ride, until/if bigger numbers show up that prove that something needs to be done...
hang in there !!
Age@dx: 55
5/05 PSA: 1.8 ;12/07 PSA: 3.7 ;7/08 PSA:4.7
8/08 Biopsy1: 3 of 6 irreg
11/08 PSA: 6.5; 12/08 Biopsy 2: of 12, 3 cancer, other 9 irreg; Gl:3+3=6.
1/22/09 RRP; 1/25/09 Released; 1/28/09 Pathology: Cancer on 10% of gland, lymph & SV were benign, Gl re-typed 3+4=7, stage T2c
2/13/09 PSA:0.1
3/9/09 back to work
6/09 PSA:0.1; 10/09 PSA:0.1; 2/10 PSA:0.3 ; 4/10 PSA:0.4 Referred to RO
5/4/10 First RT.;6/25/10 Final RT. ended up 36 treatments, 64.8 Gy.
8/10 PSA:0.2

Veteran Member

Date Joined Nov 2008
Total Posts : 697
   Posted 9/23/2010 11:20 AM (GMT -6)   
Hey Mel.
Here are my answers, which are necessarily colored by my SRT experience. Yours probably won't match up exactly, should you undergo SRT.

1.) Probably around 38 treatments, 1 per day, Monday through Friday. Mine took about 15 minutes from checking in at the desk to walking out the door. The actual time when the machine was on was just under 10 minutes in my case, as I recall.

2.) You should be able to work the treatments into your schedule depending on your individual commuting circumstances. I live and work about 5 minutes from the hospital, so I basically used a coffee break each day for treatment.
I know some people report fatigue, but I didn't really notice any. My problem was that my bowels got tickled by the radiation, and towards the end of the 38 treatments I started having loose bowels, painful bowel movements, etc (all of which were treatable and temporary and did not interfere much with life in general.)

3.)You might have bowel irritation, bladder irritation, and fatigue. Usually these are not as bad as patients expect. Usually. Sometimes patients get away with zero side effects. A small percentage of patients have serious complications.

As to chances of a cure, things look favorable in your situation (I sound like a Magic 8 Ball, right?) You can run your numbers through the MSK calculator at nomograms.org for a clearer idea. There are no guarantees, but starting with a low PSA like yours is right now would really increase the odds of success, as does your positive surgical margin (provides a local explanation for the PSA increase, and local means potentially curable by SRT).

I blogged about my experience and did not spare my readers any detail about problems. See my sig file for that blog.

I also encapsulated everything I learned about SRT (side effects, chances of success, etc) over the past 3 years in a Google "knol" (guide) at: knol.google.com/k/salvage-radiation-for-prostate-cancer and on that knol I have linked to some recent very useful articles, like the one for us lay people in the PCRI Insights newsletter ("Nine Decisions") and the more academic review of the state of SRT by Choo.

Hope this is of some help!

Best wishes.

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) Jan-Mar 2007
PSA 9/2007 and thereafter <0.1

Veteran Member

Date Joined Jul 2010
Total Posts : 3887
   Posted 9/23/2010 11:43 AM (GMT -6)   
Mel, many of us, including myself, are in the same boat..You must have a copy of Dr. Walsh's book, Surviving Prostate Cancer, 2007 edition. Carefully read pages 377 through 384..Your particular numbers point to a local reoccurrance (maybe) that is indeed treatable with radiation..There is still a good chance your cancer can still be cured.. Nobody said this was going to be easy....

The one thing you have is TIME.. Like James said, there is no big rush, Your emotional state probably presents a bigger problem to your health than the PC...You need to get that under control first. If you let your imagination run wild, you are doomed..PSA anxiety is very real. That's why many PC docs do not use the ultra-sensitive test. It can cause more problems than it prevents..

Now, is radiation the best course of treatment for you should you need further treatment? I would ask your Radiation Oncologist this question. "If you expect me to accept a dangerous, $100,000, treatment program, you must prove to me, or at least convince me, that it's necessary and that it will be effective. Is that asking too much??" How often, in cases like mine, is this treatment successful??

In the meantime, live every day as though it was the last and stop worrying about things you can do little or nothing about...That will destroy you quicker than the cancer..
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

Forum Moderator

Date Joined Jan 2010
Total Posts : 7080
   Posted 9/23/2010 11:44 AM (GMT -6)   
If you look back at my IGRT thread (see sig.) it covers the side-effects I had along the way.
Mine started immediately due to the G 4+5 and multiple EPE/ multiple positive margins. Based on the logic my doc used in discussion with me, you are not there yet.
1) see sig.
2) I would have been able to do that, but would have been really dragging the last couple of weeks, and 8 weeks or so afterwards. You'll be in bed by 7 if you had the same path as mine.
3) They will likely expect you to go to a colo-rectal guy to get everything as in-order as possible before starting RT. I had to get a clearance from mine. My 'roids seem to have become permanent - before they acted up once a month, now it is constant. Rad. Oncologist says it isn't the treatment (yeah). Don't believe them.
4) know nothing about Umich.
5) Can't help there.
My IGRT journey -

Regular Member

Date Joined Apr 2008
Total Posts : 364
   Posted 9/23/2010 12:00 PM (GMT -6)   
The thing I would add would be to discuss HT before and during the SRT, HT is known to weaken any PCa cancer and help the SRT be effective.  The usual time on HT ranges from 6 months to 2 years.  I drew the long straw and am doing 2 years, it's that da** Gleason 8 that extends my HT.
You'll probably get some guys chimming in that HT hasn't been proven to help but you need to decide who you believe the experts are, guys like Strum and Meyers or our buddies.

Veteran Member

Date Joined Jul 2008
Total Posts : 966
   Posted 9/23/2010 12:01 PM (GMT -6)   

Good advise was given above, so I can only add one thing at this point.

Why not treat the symptoms you have instead of the cancer. The symptoms being the stress and anxiety you are currently going through.

Those two things alone will certainly shorten your life span if you don't get them under control. I would be talking to a therapy coach long before talking with any cancer specialist if I was in your shoes. It won't help those helping you (family included) if your under stress and anxiety all the time.

Take the time to get your mind clear....

Not to be taken as offense...please.
You are beating back cancer, so hold your head up with dignity


Signature details in Sticky Post above - page 2

English Alf
Veteran Member

Date Joined Oct 2009
Total Posts : 2217
   Posted 9/23/2010 12:18 PM (GMT -6)   
On the basis of my hospital's threshold I think 0.06 is still not high enough to start on any additional treatment. I never even got that low after surgery!

So don't get ahead of yourself.

That said...
If and when SRT is needed then it'll take about about 35 working days or 7 weeks. Depending on your treatment centre you should be able to ask for your sessions to take place at a time that fits in with your daily routine. RT may make you tired, but that probably won't happen till half way through. Fitting it in with work will depend largely on what type of work it is and the distance to/from the treatment centre. One of the issues is getting your fluid input sorted out as you have to drink about 300ml of water about an hour before each session so that the treatment can be done while your bladder is full.

I also had a lot of tailbone pain and I think that may have been down to both sitting more than normal and sitting and sleeping in different positions. (And it has largely passed)


Veteran Member

Date Joined Nov 2009
Total Posts : 7269
   Posted 9/23/2010 12:36 PM (GMT -6)   

I just posted a long response and somehow it disappeared.

Thanks so much for all your responses. Let me clarify a few things:

I would doubt if any doctor would recommend that I start SRT NOW. It makes no sense with a 0.06 PSA. However, my next PSA will be in 3 months (12/21/10 app.). Looking at the pattern, I truly believe that my numbers will greatly exceed 0.10 and perhaps be pushing 0.20. We may do another one 4 weeks after that to confirm the reading and THEN it will be SRT time.

One of the reasons I want to see a top-notch medical oncologist is to discuss a few possibilities. One of which is the HT question. Someone said they drew the long  straw of 2 years on HT. Is the plan to follow that with SRT in the HOPE of effecting a cure? There is something very attractive about at least extending the hope for a cure for a few years!

You all make excellent points about my emotional state. Hopefully, it will proceed just like it did with the PC dx. originally. After the initial shock, I settled down and got it together. One thing that helped was doing the research/work BEFORE my actual dx. As a result, I had a plan in place (regarding consultations). As I start formulating some questions, things will improve. I am already doing better than even a few hours ago. But you all made good points. 


I'm going to reread these responses and add to my list. I am hoping I can get in to see this medical oncologist. Umich is being...difficult!







PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06

Veteran Member

Date Joined Jul 2008
Total Posts : 966
   Posted 9/23/2010 1:10 PM (GMT -6)   
Good for you Mel,

If you don't mind...share with us what the onco says as Umich.

Myself and others will be very interested. In regards to a cure...that is what SRT is planned for. A mopping up action on any cancer cells left behind. If for some reason that a cure would not be possible then HT is used for remission which as you already know can be for years.

I am more interested personally what the onco take is on adding HT to SRT.

You are beating back cancer, so hold your head up with dignity


Signature details in Sticky Post above - page 2

Veteran Member

Date Joined Nov 2009
Total Posts : 7269
   Posted 9/23/2010 2:34 PM (GMT -6)   
Someone said they were doing 2 years of HT I think BEFORE doing SRT. Again, the latest thinking seems to be that doing some HT before SRT is beneficial.

Veteran Member

Date Joined May 2009
Total Posts : 2692
   Posted 9/23/2010 3:46 PM (GMT -6)   
Hey Mel,

Call in sick tomorrow and go to New York. It will do you good. You can see Sonny and Lynne.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Red Nighthawk
Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 9/23/2010 7:10 PM (GMT -6)   
Mel, slow down. Take a breath. Smell the fresh air. You have plenty of time to get your act together. Consider all options, including holistic. Do some google searches on vitamin therapy, and juicing. There are other options out there that are infrequently discussed here, or anywhere for that matter, because they are not sanctioned by big-med, or considered main stream. How many horror stories do we know about with RT and hormone therapy to be cautions? I know I am being blunt, and many are thinking I'm wearing a tin-foiled hat, but I'm not. I'm a realist who believes (hopes) there are cures, outside the big-medical establishement. Search vit c therapy and decide for yourself. <Edited>I may be on the same road as you, just a little behind at this point. Peace.

Post edited by TC-LasVegas
In the best effort for peace on this forum...

Post Edited By Moderator (TC-LasVegas) : 9/24/2010 12:16:35 AM (GMT-6)

Veteran Member

Date Joined Feb 2008
Total Posts : 1858
   Posted 9/23/2010 7:40 PM (GMT -6)   
Got to agree with what James had to say Mel. Don't get yourself in a lather anticipating the worse but rather plan a course of action should the numbers keep rising. You only have two readings so at this stage that is not enough to go on. I personally would regard 3 consecutive increases (even at the ultrasensitive level) as a sign that something is going on. I do not understand why the doctors have an arbitrary figure set before starting treatment. I mean if I had <0.01 then 3 months later 0.03, 3 months later 0.05 and 3 months later 0.08 then it's obvious that something is developing. This is an entirely different scenario to the PSA jumping up and down at the ultrasensitive level. To me it simply does not make sense when studies say on the one hand salvage is more successful if done early and on the other hand doctors say "let's wait till it hits 0.4" by which time obviously the tumour size will have increased. It is almost guaranteed Mel that with a PSA of 0.06 that there couldn't be anything connected to Pca that is causing you discomfort. Take it easy and plan a course of action.
Take care and relax,

Post Edited (BillyMac) : 9/23/2010 6:44:06 PM (GMT-6)

Veteran Member

Date Joined Nov 2009
Total Posts : 7269
   Posted 9/23/2010 11:02 PM (GMT -6)   
Mel I deleted the portion of the post that has offended you as outlined in your post here (I can cite in violation of rule 11), I also deleted your counter post about it as it was in violation of forum rules (Cited is rule 4).


Post Edited By Moderator (TC-LasVegas) : 9/24/2010 2:11:38 AM (GMT-6)

Red Nighthawk
Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 9/24/2010 7:23 AM (GMT -6)   
I'm sorry for saying something that upset you Mel. I wish you nothing but the best of health and a sure and confident decision if that moment arrives. I sincerely meant no offense to you, please believe me.

Age: 63
Gleason grade: 3+4=7, present in both lobes, pT2c NX MX
Robotic RP: Sept. 15th, 2009
PSA's: .04, .03, .02, .05 (darn)
ED: Improvement slow but there are positive signs. No incontinent issues.
Surgery: Dr. Jim Hu. Dana-Farber/Brigham and Women's, Boston

Regular Member

Date Joined Apr 2008
Total Posts : 364
   Posted 9/24/2010 11:27 AM (GMT -6)   
Mel:  I'm the one doing 2 years of HT, I started the HT 2 months before I had SRT, the docs believe that HT shrinks and weakens the cancer before the SRT. The other 22 months are if the SRT fails, to drive the PCa as deep into remission as possible so I would get some down time from my next HT round.
If I hadn't had a Gleason 8 the normal treatment woul have been a total of 6 months of HT before, during and after the SRT. 
I'm of the belief that you jump on the cancer with both feet and don't give it a chance to breath, it just doesn't make any sense to me to allow something to grow that you know is there.
Most Rad. onc's want three consecutive rises in PSA before they'll start SRT but you need to know that it will usually  take at least a month to get set up for the treatment between the doc's appts. and the prep. 

Veteran Member

Date Joined Feb 2008
Total Posts : 1858
   Posted 9/24/2010 5:27 PM (GMT -6)   
Given that you removed the sections of the post that prompted my comment I find your action in editing my post a very reasonable thing to do. I have deleted my edited comment as irrelevant to Mel's thread.
Good health to all,
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 7:54 PM (GMT -6)
There are a total of 3,004,893 posts in 329,179 threads.
View Active Threads

Who's Online
This forum has 161751 registered members. Please welcome our newest member, Roadranger82.
231 Guest(s), 11 Registered Member(s) are currently online.  Details
SoMuchFun, notsosicklygirl, Rainy cloud, sebreg, Girlie, getting by, Todd1963, Tudpock18, oregonhay, jay185, iPoop