Recently diagnosed - PSA 15.1 with only 1 core positive @ 3+3. At 44yrs old - any thoughts?

ZZarth. Based on the 3+4, i wouldn't say you leaped over moderate and went straightto high risk. High risk is G8 or 9. Although the PSA of 15 is somewhat concerning.

Regarding the Apex- i had my primary lesion at the Apex. My understanding is that there is no capsule at the Apex so it can be easier to escape. And i believe the statistic is that 50% of all positive margins are at the apex. (could be wrong about that, if i am, someone will correct me).

I think having it at the Apex, IF you choose surgery, its even more important to have an experienced surgeon. Also, speaking from my own experience. ... My surgeon does a frozen section while the patient is still on the operating table. In my case it was a good thing, as the margins at the apex were positive. When he saw that, he went back in and cut more, retested, and got negative final margins, before closing me up.
So that might be something you want to ask about, IF you go for surgery. Not all Doctors do it.

Zzarth,

The primary reason I had combo Brachy/IMRT was that my cancer was in the apex. I met with three of the most experienced specialists in PC, Dr Scholz, DR Bahn, and Dr Barantsz in Holland.
They all said the same thing, Surgery would work, but the risk of positive margins was much greater and the risk of incontinence was also greater as the urethea and nerve bundles run through that small area. Radiation to this area can give wide margins and the nerve bundles are somewhat resistant to radiation and heal quickly.
The location of the tumor is very important in the overall decision making, I would never do surgery for a tumor next to the the prostate bed or in the apex, the risks are just higher. Normal PZ tumors away from the capsule are excellent candidates for surgery.
I've had no side effects whatever from treatments and psa has been <.1 for nearly 7 years.

zzarf, I don't know about Austin, but some of the best in the world are over in Houston at MD Anderson.

ZZarth,
Sorry to hear you are going through all this. Looks like you have a good handle on treatment options. As far as that job ,Just shooting from the hip here, but I would get a lawyer and sue that good for nothing Company!!! Good thing you are out of there though, find another company that actually cares about you, like I was so fortunate to find. Keep the faith
Dan in so Cal

Zzarth, that is very disturbing to say the least. I would at least consult with an attorney and ask the question. You don't want your job back, it wouldn't be pleasant to work in that environment at this point. But if you could possibly get compensation, why not investigate.

Man, that really, really sucks. I'm sorry to hear this. I don't really have anything to add on legal front, although it probably does bear looking into to. But...this will pass. You have every prospect of winning on the cancer front and I hope this just turns out to be a small blip on the job side.

ZZ.....sometimes you hear of things happening when you simply are so shocked you don't know what to say. This is one of those times. That a company can be so utterly heartless and discriminatory is unfathomable in 2016.

I am sure this stuff happens, but we just don't hear about it.

Frankly, your legal options are expensive and thin at best unfortunately.

However, should the local news stations catch wind of this, I am certain beyond doubt your tide would turn quickly and dramatically.

Brother, I am sincerely sorry about your luck. It will get better.

 

Hi Zzarth and thanks for the update. That's an awful high PSA for what your biopsy shows--certainly would be good to get your arms around that.

I'm curious...why do you say your only choice is surgery? Assuming you do choose treatment, any treatment should be able to cure based on what we know no.

Zzarth said...
@Tall, my points about getting a MRI was to better understand the situation... I would suspect I have occult multifocal lesions, but I don't think there is a way to prove this without just taking the prostate out and doing a biopsy, right?

"Better understand" is not a good reason to have an MRI. Advanced imaging that is not specifically tied to treatment decisions is a waste of time and money, and is apt to cause more problems, especially anxiety, than it's worth. For the reasons I already stated, a 3T MRI should only be tied to a specific treatment decision - let the doctor order that if he needs it.

I can see, given the high PSA with no apparent cause, that you might worry about distant tumors. That is certainly a legitimate concern. But then it is not an MRI you'd want -- it's a full body bone scan and CT. At your PSA, if there is anything distant, it will show up with that.

- Allen

There are only a few things that can cause a psa of 18.
Infection.
Distant mets
Psa leak (rare)
A medium size transition zone tumor
The most likely causes are infection or TZ tumor
Any treatment is likely to cure both. MRIs have a hard time seeing a TZ tumor, but often an expert RO can see one.. I personally would not have treatment without knowing why my psa was so high and rising fast.

Hey Allen

Nobody suggested a TURP ... I saw a add for laser focal ablation, and I think they mentioned that in their add...

Speaking of which I talked to a Focal laser ablation center today... they said they would need a 3T MP MRI before they could really form a plan.

Also, they stated that no insurance covers focal ablation for a prostate and the cost was >$20k out of pocket... which I feel is a little high considering it's outpatient, shrug...

Anyways, @Allen, regarding the possibility of an obstruction. Right now I do have to PEE frequently and urgently quite often... but when I do pee, it comes out about 50% full stream... no pain, just not super fast. This has been the case now for over 5 years... however, good question, I meet with 2 urologists next week and I will ask if we can get a cystoscopy to rule one out.

Also, I was previously asked about prostate volume... In the biopsy report, my prostate volume is approximately 24 grams.

Here are answers to your questions in-line

• Do I need to see a pathology report to tell me how contained it was?

##> No, I would be good with just a lowered PSA level that was monitored, and perhaps some symptom relief from enlarged prostate issues, e,g: peeing often, low pee stream velocity -- there has to be a better term for this :)


• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?

##> Sure

• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)


##> Yes

• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?

##> Yes

• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)

##> unsure still.

• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?


##> I understand they exist, I do not understand the extent of their impact.

• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids,
frequency, urgency, burning while peeing, ED).

##> Yes, which I believe steers me to more of a CK approach if we went external beam.

• Am I prepared to undergo the time and SEs of radiation?

##> No

• Am I prepared to undergo surgery and its recovery?

##> If I say no to the last question, can I so no here?


Man this sucks. Is there a 1-800 hotline I can call to complain about getting PC at 44yrs old?

:)

Thanks for all the advice guys.

Zzarth

Hi zZarth,

I am sorry to hear you have joined this club. There are many great posts above and I wanted to make you aware of other alternatives. I was 48 last year and diagnosed with G6 and G7 (3+4. 10% was G4). My PSA was 3.3. Like you, I was told surgery was the 'gold standard'. The surgeon scheduled a 3T MRI showing two lesions. One was very close to my nerve bundle and he was not sure it could be saved. I immediately began looking for alternatives. I stumbled upon focal treatments. I see they have been mentioned above and I chose focal laser ablation.

Laser ablation targets the tumors in real time while you are in the MRI machine. The equipment used is the same as used on brain and kidney tumors so it is very precise.

Last November I went to the University of Texas and had my lesions ablated by Dr Eric Walser. The procedure took a few hours and I left the hospital the same day and flew home the next day. I have had NO side effects and have preserved my quality of life which at 48 was important to me. I missed one day of work when the FLA was done. The procedure is also being done at UCLA, University of Chicago, Desert Imaging in CA, Sperling Prostate Center, Emory University, and the National Institute of Health performed a clinical trial several years ago. FLA does not prevent you from having other treatments such as surgury or radiation should the cancer return. I was looking to preserve my quality of life for as long as possible while hopefully even better treatments come along.

This past May I had my six month follow up 3T MRI at a leading cancer center in Boston. My MRI CD was read here in Boston and also by Dr Walser and I am happy to report no cancer was visible. My PSA also dropped to 1.85 which is even lower than when I began having PSA tests at about your age.

There is an alternative site called "Inspire" which has a section dedicated to focal treatment with very knowledgeable people just like on this site who can answer questions.

The downside is most of those performing FLA make you pay out of pocket. In my case it was $20,000. I did obtain out of network approval from my HMO and after an appeal they paid for the entire procedure except for my $500 deductible. There are also clinical trials
Underway and you could qualify with only one lesion and G7.

You need to advocate for yourself. Please post back, I am happy to answer questions if you want. All the best.

ZZarth,

Dr. Walser is at UTMB in Galvaston, where he is head of radiology. I believe he is connected w UT in Houston. He has performed the second most FLAs behind Dr. Sperling in NY, and is a pioneer in FLA in my opinion.

My health insurer is a small HMO in Boston, Tufts Healthcare. Once I learned I was a candidate for FLA, I called the HMO to find out if they would cover the procedure, laser ablation, which they said they would, it is FDA approved, but not used much at this point for Prostate. Since there was no one in the New England network performing the procedure, I petitioned for out of network coverage and my PHP signed off which then went to the HMO's MD and he approved. I paid out of pocket for the procedure and then submitted my receipts for reimbursement. Initially they only paid about 10%, so I appealed the payment based upon their pre-approval. It took, a few months but they ended up paying. In my written appeal, I argued had I gone through with the scheduled and approved surgury at the Harvard teaching hospital or chosen radiation it would have likely cost them more than the $20k. The covered my post FLA MRIs locally. The inspire site has much more info on insurance reimbursement and someone has likely been through it with Aetna.