How I got to "undetectable" PSA

[Istomin]

Hello, Everyone. I’ve benefited greatly from reading the posts on this site and since I’ve now reached a (temporary?) resolution--“undetectable PSA” after various treatments--I thought I’d summarize my story. All of my treatments were at the Smilow Cancer Hospital, which is part of the Yale-New Haven Hospital system in Connecticut. I’m 71.

7/1/17 PSA 9.1

9/11/17 Biopsy found Adenocarcinoma (total 22 needles used)

3 needles Gleason 4+4=8/10 (Grade Group 4) one with perineural invasion

1 needle Gleason 4+3=7/10 (Grade Group 3) with perineural invasion

1 needle Gleason 3+4=7/10 (Grade Group 2)

5 needles Gleason 3+3=6/10 (Grade Group 1)

9/21/17 NM Bone Scan Whole Body: No metastases

10/23/17 PSA 15.8

10/23/17 CT Chest Abdomen Pelvis W IV Contrast: No metastases

11/20/17 Radical, robotic, nerve-sparing prostatectomy by Dr. Preston Sprenkle. Removed many lymph nodes, did not find any extracapsular extension; margins negative but tumor close in one area.

Pathology report: percent malignant cells (after manual microdissection): 80%

Somatic variant detected in the tumor: Variant Allelic Fraction BRCA2 D1386fs 42%

12/29/17 PSA 0.077 (it was disappointing that PSA was not undetectable after surgery)

2/29/18 PSA 0.073 (a slight drop made me hope it would drop further; it did not)

3/27/18 PSA 0.097, testosterone 423 ng/dL

4/4/18 PET/CT Scan skull to thigh prostate: “Small mildly avid focus in the left inferior sacrum.”

4/13/18 PSA 0.113, testosterone total 327 ng/dL. First three-month Lupron injection

4/19/18 MRI Sacrum W Wo IV Contrast: “Nonspecific, small foci of vague enhancement and T2 bright signal in the left S4 region and left pubic body.”

5/11/18 PSA 0.056 (drop after month on Lupron)

6/4/18 MRI pelvis without and with contrast (MRI prostate): “No prostate cancer recurrence in the pelvis status post prostatectomy. A 1.2 x 0.9 cm T2 hyperintense and minimally enhancing region in the left S4 vertebral body is again noted, but its borders appear more vague as compared to prior (previously 1.1 x 0.9 cm). There is no associated bone expansion. The T2 hyperintense lesion seen in the left pubic body is likely excluded from the field of view on this study.”

6/8/18 PSA 0.035

7/12/18 PSA 0.026

7/13/18 Second three-month Lupron Injection

8/24/18 PSA 0.013

9/11/18 Begin 39-session radiation with RO Dr. James Yu, ~ 70 Gy (I forget the exact number but Dr. Yu and I agreed on an “aggressive” dose) to prostate bed, pelvic area and bone metastases.

10/9/18 First six-month Lupron injection

11/5/18 End 39-session radiation.

11/06/18 PSA 0.011

1/3/19 PSA 0.008, testosterone <12 ng/dL

2/28/19 PSA “undetectable”

So, here I am. I’m approaching the one-year anniversary of being on Lupron and Dr. Yu, my radiation oncologist, and I agreed about continuing with it for another two years (again, a more aggressive choice). My next PSA test will be in six months. The reason my radiation was originally delayed somewhat was because of incontinence, which was a real problem for months after surgery (the surgeon who performed the prostatectomy said that the location of the tumors made it trickier than usual to reconnect the urethra). My hope was that my control would improve (incidentally, working with a physical therapist in the Yale-New Haven Urology Department who specializes in pelvic floor issues helped me considerably). The side effects of the radiation were mild in my case; incontinence got somewhat worse and fatigue increased a bit, but these passed fairly quickly after radiation was completed. It’s now over a year after surgery and my incontinence has improved but only to about 80 to 90%. I looked into various procedures that exist for this but don’t believe my situation is bad enough to warrant any of them (artificial sphincter, etc.). I use pads all the time (I like the Tena brand) and experience increased leakage when I exercise and if I drink alcohol. This is a nuisance but manageable with forethought. I have noticed some fatigue and muscle aches after starting the Lupron but it helps to exercise vigorously. I also gained about twenty pounds and am now working on losing it (down five pounds so far; healthful diet). I go to the gym almost every day, alternating between intermittent high intensity aerobics on a stationary bicycle or elliptical trainer, weight machines (I’ve been trying the slow-weight method), and walking (averaging 4-5 miles a day). I still get occasional hot flashes but they are manageable. The libido is completely gone. My wife of over thirty-five years and I have a wonderfully supportive relationship and I think of her as my “Rock of Gibraltar.” I have two grown children who have also been great. I retired last spring after decades of teaching in a university and now write full time. “Undetectable” is a wonderful word and I hope my PSA stays that way for a long time, although I am well aware of what the genetic mutation that I have implies about the future.

[NPfisherman]

Welcome to the forum we all wish we had never had to join...Thanks for posting...May you be a member of "The Undetectables" for a long, long time.... sounds like you are doing everything you can... Take it a day at a time...enjoy life....

All the best,

Fish

[Istomin in reply to NPfisherman]

Thank you, NPfisherman! Fingers crossed.

[Tall_Allen]

"I am well aware of what the genetic mutation that I have implies about the future." But if I understand correctly, it is a somatic mutation rather than a germline mutation - which makes it more susceptible to therapy, not less.

[Istomin in reply to Tall_Allen]

Thanks for your comment Tall_Allen. I repeated what my surgeon and RO told me when they saw the pathology report--it's an aggressive form that would be hard to eradicate by itself even without the bone metastases, which make it virtually impossible. Now that you mention it, I don't know why the pathology report refers to a "somatic variant" (and I didn't understand the implication at the time). Isn't BRCA2 germline? My father had PC too, if that's relevant. I've been told (and have read on this site) about various treatments that are used when/if Lupron stops working, and this is what I guess I may have to face at some point. But for now, things are as good as they can be, at least with my PSA.

[Tall_Allen in reply to Istomin]

Pathology reports don't comment on genetics per se - although they may stain for certain proteins that are related to genes. BRCA2 can be somatic or germline. It sounds like yours is somatic. Germline would require a saliva or blood test, not a biopsy.

[Istomin in reply to Tall_Allen]

Thanks for the explanation, Tall_Allen. I didn't know this and will raise it with my doctors.

In light of the above (my BRCA2 appears to be somatic), does the treatment I got look like the "standard of care" for my situation? What might be advisable in the future, if Lupron stops working?

[Tall_Allen in reply to Istomin]

Radiation hopefully will work well. Nothing to do now but wait.

[Jbooml in reply to Tall_Allen]

I forgot your particulars...what are the defects in your case....if you don’t mind sharing...I wish my Docs took some interest in mine....well those only effecting the cancer. I can’t imagine one can hope for a ‘dream’ defect but in the grand picture some are far more tolerable than their hitchhiking ‘deplorables’

[Istomin in reply to Jbooml]

Hi, Jbooml--I guess my problems were the relatively high Gleason score, the location of the tumors in the prostate, which made reconnecting the urethra tricky (and may be the cause of my continuing and likely permanent incontinence), and that there were 2 bone mets. But as of now the cancer appears to have been arrested through Lupron and radiation.

[Jbooml in reply to Istomin]

Sorry to hear about these unforeseeable developments...I was inquiring as to TA’s mutagenic defects...as in biochemical or genetic....not to say I’m not interested in where your disease has taken you....brac2 has particular challenges and we’re all solidly grateful that you’re team is hammering it hard.

[Tall_Allen in reply to Jbooml]

Sorry- I don't know what you are referring to.

[Jbooml in reply to Tall_Allen]

Did you have your cancer or for that matter your relevant autosomal genetic markers profiled. I don’t expect you to share this publically understandably but keenly interested in all the possible combinations contributing to these morbid variants. It’s one thing to pour over all the epitopes etc and quite another when detailed and personalized inferred from other’s experiences.

Thanks

[Tall_Allen in reply to Jbooml]

No I didn't.

[j-o-h-n in reply to Jbooml]

"I don’t expect you to share this publicly understandably" <===<<< ???

Please do NOT take this as criticism but aren't we all here to share publicly? If not then what are we here for? I'm talking about the subject of Pca not skeletons in the closet. That's for our shrinks to charge as for...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/12/2019 9:20 PM EST

[Jbooml in reply to j-o-h-n]

Everybodies different...some share others not..Im pissed off my docs arent a little more concerned or interested about my particulars...so im left to dig around...found out some ethnic leads that might concern my lot..quite interesting...guys with natural insensitivity to T...called reifenstein syndrome...an undermasculizing gene, ironically strongly associated with prostate cancer..i seem to fit in many ways..hows that for sharing.

What doesnt make you stronger can only nearly kill you.

[j-o-h-n in reply to Jbooml]

I'm sorry but I didn't mean for you to share. But now that you did someone else might see your post and share their experience fighting Pca and any other malady that you or one might have. So again let me apologize in wording my post the way I did. You might have noticed that I ask newbies to please gives us data on themselves so it might benefit them as well as us. Most of the newbies I ask do not respond. So I get a little ticked off, since they come here for info but do not share their info. But c'est la vie.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/12/2019 10:26 PM EST

[Shooter1]

Sounds like you got it and have a rosy future...congratulations at undetectable.

[Istomin in reply to Shooter1]

Thanks, Shooter1!

[abmicro]

Looks like you went for a cure with very aggressive radiation. I hope you accomplished that goal. For sure at a minimum, you will have many years of cancer free remission with what you did. Enjoy life.

[Istomin in reply to abmicro]

Thanks, abmicro!

[Costarica1961]

Almost a idenical experience. Although there is a bit of age difference. My PSA was 12.3 in 6/13 OF 2016. I to had robotic prostectomy and 38 sessions radiation as well as incontinence at night incontinence with sleep mask. Otherwise bridge over the river kwai. On lupron one year with zytiga test, 12 psa 0.0006 and the closest i have come to a sexual thought, was when i walked pass the bakery dept. I have lost 20lbs i guess you may of found mine. I swim and walk bruno my lhaso op with a attitude. You sound like numbers guy and so am i but we truly are own captains and the masters of our destiny. At least our outlook.

[Istomin in reply to Costarica1961]

Thanks Costarica1961 for your 20 lbs! I look forward to passing them on!

[Litlerny]

Very good news, Istomin! Kudos!! I hope it lasts a long, long time.

[Istomin]

Thanks, Litlerny!

[Rmurchu]

Thanks for sharing , what Gleason score and stage are you?

[Istomin in reply to Rmurchu]

Gleason ranged from 6-8, but I don't remember the stage and it wasn't in the records I could access.

[Rmurchu in reply to Istomin]

No worries, no need to look, I am Gleason 10 not near yours just your story sounded positive and wanted to see if you were close to my Gleason score...

[PGDuan]

Hello Istomin, happy for your latest results. Enjoy the good news.

I’ve had a similar journey and am recently in the undetectable group as well. The main question in my mind is how long to go with the ADT + Zytiga. My MD seems to recommend 18 months based on recent studies, although I’ve heard various suggestions from other experienced doctors ranging from 6 to 24 months. Since I am tolerating it well so far I also plan to choose the most aggressive treatment for now.

[Istomin in reply to PGDuan]

Thanks, PGDuan. MY RO wants me to be on Lupron for another 2 years, for a total of 3. I'm tolerating it well. He hasn't said anything about adding Zytiga and I should probably ask about that too.

[PGDuan in reply to Istomin]

Yes, probably worth asking your MD about it. I am Surely no expert but it came from my MDs at Stanford highly recommended based on recent studies and recent FDA approval for my kind of situation.

[leo2634]

Welcome to the squad of Undetectables !

[Istomin in reply to leo2634]

Thanks, leo2634!

[keepinon]

Hi Istomin,

Congrats on being undetectable.!I hope to follow your path, but what I am most curious about now is your journey through incontinence. I am only 17 days post-RP, but my incontinence is 100% when standing. I was wondering how soon did you start seeing improvement? One month, 3 months, etc. Was it incremental or once it started improving, did the gains come quickly? I have had one session with a PT who hooked me up to a bio-feedback machine and see her again in a few weeks. Doing lots of kegels, Just looking for some encouragement as now it does not seem like it will ever get better.

I expect to have to have RT in the near future also. Thanks for whatever you can pass onto me!

[Istomin in reply to keepinon]

Hi, keepinon--thanks. My improvement took months and was gradual. 5-6 months after surgery I was still leaking a lot and using pullups (except at night--I still wore pullups, but there was much less leakage). There were also setbacks when leakage would increase for no obvious reason and then improve again. I kept doing kegels throughout. Exercise, walks, alcohol--all increased leakage. So did overdoing the kegels, as when I felt sore from the number I did. The one jump in improvement I had (rather than a gradual rise with ups and downs) was about 7-8 months after surgery when I was put in touch with a therapist and she showed me/trained me to do the kegels better. I regret that I didn't know that such therapists existed until then and some of the doctors with whom I dealt did not know that a PT was on the staff. I got to about 80 to 90 % control (it's really hard to quantify) and changed to pads before radiation started, which was around nine months after surgery. My control deteriorated after the midpoint of the 2 months of radiation, but came back to the same level as before after the radiation was finished. I'm assuming that my level of control is now frozen at 80 to 90 percent and I'm learning to live with it. I use only pads now and go for hours without leakage. I'm going on a trip out West tomorrow for some sightseeing--the first trip of any length since surgery. I want to see how I have to handle things in an unfamiliar setting over the course of a week. But I gather that my case was particularly bad because of the tricky nature of the urethra reattachment caused by the tumor's location. Most, I believe, do better overall and more quickly. Hope you are one of those! 17 days post RP is very early still and what I've read suggests that there will be marked improvement over the coming months and a good chance to regain complete continence within a year.

[keepinon in reply to Istomin]

Thanks much for the reply. Since I am not the "patient" type, it tells me that I have to be tough mentally and deal with it until things improve. Kegel strong! Good luck with your journey.

[Istomin in reply to keepinon]

You too!

[j-o-h-n]

Greetings Professor... I think you get a passing grade.

Did you realize that Dr. YU wears personalized sweatshirts from Yale University? (lucky guy).

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/12/2019 9:27 PM EST

[Istomin in reply to j-o-h-n]

Thanks j-o-h-n! Best of luck to you too.

[petercraig2]

Congratulations Istomin, great bio and outcome looks good for you.

It's good for newly diagnosed guys to know there can be excellent outcomes such as yours even though it can be a lottery.

Like yourself I had rising PSA after surgery but radiation and using Estogen patches for ADT and PSA is now .011. My Onc lets me have monthly PSA and Testosterone blood tests just to keep an eye on things. Also quarterly I have blood tests for Alkaline Phosphatase, DHT and Chromogranin A just to have early warning of any potential metastasis in bones or othewise.

Peter

[Istomin in reply to petercraig2]

Thanks petercraig2! Sounds like things are going well for you you and that you are taking every precaution.