CSN Login
Members Online: 6

You are here

What lies ahead?

CC52
Posts: 103
Joined: Nov 2013

Hello everyone,

I wanted to start by saying how much I appreciate the contributions each of you have made to this forum, and how I have already benefited from the knowledge, experiences and opinions you've shared.

Here's my situation:

I am 61, and diagnosed with Pca in October 2013. There is a history of Pca in my family, with my father (who will be 90 in May) and his three younger brothers. One of them died as a result of Pca about 20 years ago. 

PSA in 2003 was 1.9, increased to 6.1 in June 2013. Along the way, there were a couple of drops, but in all a steady rise. My pcp has encouraged me to see a urologist since 09, but I have resisted. But the reality of the family history and the 6.1 sent me to the urologist. Biopsy revealed 3 of 18 positive: Rt mid lateral @ 30%, Lft apex mid @ 5%, Lft apex medial @ 30% w/perineural invasion present. Gleason score of 3+3=6 in all cores, with overall Gleason of 6. CT and bone scans negative for mets.

Urologist wants me to move forward with treatment or removal. Radiation oncologist made no recommendation, (he advised taking my time, no rush) although he implied I may be a candidate for active surveillance.

I intend to seek second opinions from both Johns Hopkins and Georgetown. I am encouraged by the growing acceptance of active surveillance, and hope that may be an option for me. If the second opinions lead to the reality that something needs to be done, I am preparing for that eventuality.

If you have any comments, please share them with me. I will do the best I can to stay active here and update as things progress.

My thanks to all...

 

 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Congrats!!!  Much better than my post-CK results.   Here's hoping that the trend continues in this direction.

VascodaGama's picture
VascodaGama
Posts: 3392
Joined: Nov 2010

I wonder about the other fronts. The PSA is consistent and targets the ultimate success; CURE.
What about symptoms, apparent side effects or matter of the sex department? Do they make part of this success?

Let us know more details.

Congratulations

VG

CC52
Posts: 103
Joined: Nov 2013

That's a great question VG!!

At six months post CK, and after the tough time dealing with the shingles during my treatment, I am happy to report all is good. Mostly.

When I began my treatments and up to Nov 30, I was on two Flomax (tamsulosin hcl 0.4mg) per day. For the next 30 days, I reduced to one per day. On Jan 1, I went off it completely.

I tell you all that to say my experience was:

Urinary issues (difficulty peeing, discomfort, etc) were greater during and immediately after the treatments, and have lessened as time has gone on. Peeing has returned to normal as I remember it.

Sexual issues related to the Flomax use were "unpleasant", due to retrograde ejaculation. I described that in an earlier comment in this thread. Ejaculating was also difficult at times - but hard to know if that was a result of the treatment or of my own overthinking it - i.e. would I *** or will it hurt or what if I can't? The sensation of cumming then was noticeably different, and it was painful at times. Never had much of a problem getting an erection either, but maintaining it didn't always happen. Over time, sexual function has improved, and I'd say to about where it used to be.

The one area that has not returned to normal yet is my bowel movements. Prior, I was a regular morning guy, once per day with a normal stool. Since my treatments ended, I usually go in the morning, but there are times that I have 2 or 3 bm's a day. And when it comes -get out of my way! A few times a almost didn't make it to the john. Also, instead of the normal stool I used to have now they are much softer/loose. Dr says that is a result of the treatment and dietary fiber, and may improve with more time.  

(wasn't that fun to read fella's?)

I'm very pleased with my results so far, and accordingly, I'm thrilled with the decision I made to do CyberKnife. I understand that there are no guarantees - and the future is full of uncertainty, but I am living my life anticipating that I will evade the bandit from here until my last breath.

Peace,

CC

bob33462
Posts: 78
Joined: Feb 2016

Very happy for you!

VascodaGama's picture
VascodaGama
Posts: 3392
Joined: Nov 2010

CC

Great post. Thanks for sharing the details.

The bowel problem will also improve in time. I also had soft stool for quite a long period that improved after imposing some restrictions on diet. A colonoscopy revealed diverticulosis that were accumulating “grains” and expelling them later with traces of blood. My doctor commented that it could be a cause from RT. (could it?)
In fact RT has caused me to lose partially the sensation when passing stool but I have never been incontinent and lately (10 years post RT) I begun seeing some improvement in that too.

Best wishes for total recovery.

VG

CC52
Posts: 103
Joined: Nov 2013

 

Met with my RO Wednesday for my nine month check, and it's all good news. When he said "I'm not worried about you at all", I pointed to my head to which he replied he can't help me with that, we all had a good chuckle Wink.

He told me things seem to be progressing normally, and needless to say I'm very happy with the results. Lingering side effects with urination and bowel stuff, but nothing that is a huge problem for me. Sexually - no problems.

History:             

Start Of CyberKnife Treatment (9/19/2014) psa 7.5 ng/ml

1 month - (10/22/2014) psa 3.7 ng/ml, testosterone 471 ng/dL

3 month - (12/17/2014) psa 1.3 ng/ml, t 503 ng/dL

6 month - (3/18/2015) psa 1.1 ng/ml, t 380 ng/dL

9 month - (6/24/2015) psa 0.5 ng/ml, t 469 ng/dL

Will check back in September, until then, I raise my glass in celebration my friends!

 

hopeful and opt...
Posts: 2335
Joined: Apr 2009

Celebration time...not only the best toasts , but next week we will arrange to have fireworks in your honor.

CC52
Posts: 103
Joined: Nov 2013

(Posted in the Cyberknife Treatment thread):

My one year check-up on 9/25 went well... at least as far as the numbers go:

PSA came back at .4 ng/mL (.421 ultra sensative), and testosterone was 449 ng/dL . Definitely pleased about that.

Still having some issues with urination though. During the day, starting and flow is good, but with more frequency than usual. Sometimes, an hour or two between visits to the bathroom. Don't feel like I'm completely emptying every time.

Consultation with my RO is this can happen at about the one year mark, and I mentioned to the Dr. that I had already put myself back on Flomax. He agreed with that, and offered a steroid if I felt it necessary. I declined. I've upped my doseage now to two pills per day, so I'll see if that helps. I've also had some serious pain around the tip (shooting needle like symptoms) at times - mostly as I settle into bed at night. That really gets my attention!

I trust my RO's advice on what I'm experiencing - that it's not at all unusual, and that with more time (2-3 months) things should begin to settle out with a return to more normal habits.

CC

VascodaGama's picture
VascodaGama
Posts: 3392
Joined: Nov 2010

Yes let's celebrate with fireworks,... what an idea.

Congratulations.

The purposes (title) of this thread got now a clear answer and the best ending. 

Best wishes

VG

CC52
Posts: 103
Joined: Nov 2013

Greetings fellow forum mates! I've not been good about staying active here for a few months now, so I have some catching up to do.

For the most part, things have been okay. As I've described here in various posts, or on the Cyberknife thread (http://csn.cancer.org/node/292915), I have experienced some difficulties, mostly related with urination since completing my treatment. I'm on Flomax, back and forth a couple times between one and two per day (Dr's advice) as my symptoms change. Mostly, I continue to have the most difficulty urinating at night. I try to watch my liquid intake, but as I've told my Dr., not much seems to make a difference. Peeing once or twice per night, but it's the flow - or lack of it - that is most troubling. No issues during the day. Anyone have any thoughts?

Stools remain soft, and urgency can be a problem from time to time, but so far no accidents!

Sexual function has also been a bit inconsistant. But hey, I'm not 23 so I'm working to accept changing dynamics related to age and radiation treatment.

Number recap goes like this:

Start Of CyberKnife Treatment (9/19/2014) psa 7.5 ng/ml

1 month - (10/22/2014) psa 3.7 ng/ml, testosterone 471 ng/dL

3 month - (12/17/2014) psa 1.3 ng/ml, t 503 ng/dL

6 month - (3/18/2015) psa 1.1 ng/ml, t 380 ng/dL

9 month - (6/24/2015) psa 0.5 ng/ml, t 469 ng/dL

12 month - (9/24/2015) psa 0.4 ng/ml (.421 ultra sensitive), testosterone 449 ng/dL

And the really GOOD news is, in spite of my urinary/bowel/sexual inconsistencies, my most recent numbers are:

18 month - (3-18-2016) psa 0.1 ng/ml (.139 ultra sensitive), testosterone 264 ng/dL

In all, I'm feeling really good for a slightly overweight, out of shape soon to be 64 year old. I'm happy with my decision to do the Cyberknife treatments in spite of the related (to my experience) side effects. My results so far are all I need to have as confirmation that the treatments were successful. My next appointment is in September, and I'll do my best to provide an update.

All my best to everyone - CC

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

While you seem to think you need further confirmation, I'd say that your treatment w/CK has been successful in terms of killing the cancer.  Generally, after radiation, the goal is to achieve a PSA less than 1 and you have far exceed that at 0.01 after 18 months.

FWIW, I am now over 5 years past my CK treatment and still haven't gotten a PSA result that low yet.  My last/lowest reading was 0.200.   So, it's been a much longer road for me to receive confirmation of a "cure."

Sorry to hear about your difficulties w/urination and "less than satisfactory" sex BUT those things may not be due to CK.  Not saying that CK may not have anything to do w/those problems but your age may be the main factor.

I'm 65 and am also still taking urinary frequency drugs (Flomax and Oxybutynin) and have been taking Cialis (mainly as a sexual aid but it also is supposed to help w/urinary frequency) because (like you) also still have those issues BUT I do not attribute them to my CK treatment.  I think that they are mainly a function of age.

In any event, congratulations on your apparently successful CK treatment!  Please keep us up to date as time passes. 

CC52
Posts: 103
Joined: Nov 2013

Not looking for further confirmation at all SSW, simply reporting my results. I'm absolutely thrilled with my numbers...not so much with the other nagging issues. I agree they could be age related, but I had none of the problems I have had to deal with prior to CK. I'm just a layman connecting the dots as I see it. I remain optimistic that with time will come some improvement. Additionally, I fully recognize that each of us, regardless of our treatment type, will have different results and experiences. You roll the dice to a large extent, and you hope to be prepared if things don't go 100% as hoped. To this point, no one from my CK treatment staff has suggested that my experience is age related. What I have been told is this is a reaction that some men have to the treatment, perhaps not CK specific, but to radiation therapy in general. 

Many thanks again to you for all of your support, advice and concern for me and all of our other friends here. I raise my glass in a toast to you and us!

Best regards - CC

 

 

 

Old Salt
Posts: 821
Joined: Aug 2014

A feather on the cap of Dr. Collins and his staff. Hopefully, the urination issues will improve with time.

PS: I was also irradiated at G'town (CyberKnife x 3 + IMRT x 25), but had a Gleason score of 9. Almost two years later, my PSA is 1.4. I am hoping it will go down some over time.

CC52
Posts: 103
Joined: Nov 2013

Thanks Old Salt, and my thumbs up to your progress. It's nice to know you are a patient of Dr. Collins. Really great people up there doing good work! Continued success my friend. A toast to us!!

Will Doran
Posts: 207
Joined: Sep 2015

CC,

 Congratulations.  This calls for another toast.

More good news.  Just like I got this week. (See post-Good News Keeps Coming).

May we all continue to read and hear these things. And may we all live to see a complete cure for this beast of a disease.

Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 3392
Joined: Nov 2010

CC

Another update with excellent results. I will celebrate yours, swing's and Old Salt's successes with a glass of Esporao red.

One thing you should remember is that you got your prostate in place, most probably with living benign prostatic cells producing PSA serum and subjected to infection and imflammation, that could be blocking the normal flow. Alfa blockers may help the voiding issue but will not cure the problem. Radiation could have affected the muscles in the bladder's wall overstretching it and now do not squeeze hard enough to completely empty it. Maybe a CT scan and a cystoscopy examination manages to pin point the cause.

Best wishes for improvements in that issue.

Congratulations,

VG

Pages

Subscribe to Comments for "What lies ahead?"