PSA 150 - Are we looking at PC w Mets or is there a chance it’s something else?

A rough quote of Dr. Walsh would say that a high PSA ay mean nothing, and a low PSA might be the worst cancer.

The real rule is that the PSA number means that there is a problem. It does not mean that there is absolutely cancer.

Guys in my group have PSAs in the hundreds, and no sign of cancer. They turn out to have infections.

But my PSA was never over 7.4, even with 95% of my prostate involved in a G4+5 tumor. I did removal, then radiation. Now I am at 7.6 based on bone mets.

What am I saying? PSA is an indicator, not a declaration. High or low is of little relevance.

Docs should investigate by running an antibiotic series. If that doesn't lower the psa, a biopsy is called for.

hoping and praying for the best news Lady J! you have tons of knowledge and support from the fellas here on HW. Best, JKO

Prayers for good outcomes LadyJane. The waiting is the hardest part. My husband was diagnosed last July, now post surgery, and on hormone therapy with radiation coming soon. It's a long road for sure, but I am praying your road is a short one to good news. This group has been a terrific wealth of knowledge and support - you're in a good place!

Hi Everyone,

My husband & I are emotionally and physically tired this weekend. It was a very long day @the Prostate Center on Thursday. Funny thing, the center was primarily run by an all male staff of nurses, which is obviously intentional.
We were callled in early, so we were a bit rushed (it's a 1&1/2hr trip to the city for us), & we ended up being there all afternoon.

The procedure went really well considering. Because his job is so physical they decided to take him off work on Friday. Good thing, he was pretty sore yesterday. Doing much better today, but taking it easy.

After much discussion w the doctor, it was determined the biopsy was necessary. He scored 30/35 on their suspicion scale, i.e. 2 PSA's scoring in the 150's to rule out a false positive, his symptoms, and his age.. They did a urine stream test which was @the low end of normal, w 90cc residual; but he's on Flomax right now so I'm not sure how accurate the test really was.

During the procedure nothing blatant showed up w the ultrasound i.e. the prostate appeared normal in size. The doctor didn't want to speculate, but thought it felt a bit rigid. Not a good sign from what I've learned. He took 14 biopsies & had already decided to put a rush on the samples. We should know in 7-10 days. Also ordered a Bone Scan ASAP. They didn't have a date for that on Friday, so I'll call Monday. They normally book a f/u visit but this doctor decided he would call us w results as soon as they came in. If those test results come back inconclusive or questionable we'll ask for a 2nd pathology opinion (might ask for that regardless) & he'll book the MRI Real-Time Elastography. It's very new to this clinic, this doctor has only used it once himself and said it's booked till April; but by how he was talking he'd get around that if necessary.

The Nurse talked to me privately after and mentioned, they were concerned because often PC @his age w such a high PSA, in combination w his symptoms, can mean a more aggressive kind of cancer; which is what I've found in some of the literature I've read. Dr. Walsch's book (4th edition) was delivered last week. I now understand why it's referred to as the "Bible" of PC! It's a little overwhelming, and I was a nurse; which can be a curse & a blessing in these situations!

I worked on neurosurgery for a year and then in Community Health w acute and palliative patients, before getting very sick myself w (IBD) Inflammatory bowel disease, which was diagnosed when I was 12. I've been on disability for a long time & have an extensive surgical history w nearly 100 emergency admissions & lengthy hospital stays from Mount Sanai to Mayo Clinic,& my husband & family have been there for me every step of the way. We never could have children, although extremely difficult, we knew early on it was just not in the cards for us. We have 10 beautiful nieces & nephews to love instead! My last surgery in 2016 was life saving but left me chronically nauseated & dehydrated, w malabsorption, but no longer in such pain & I've been stable for 2&1/2 years w a PICC line that I hook up to for IV fluids and a bit of food every night. It's kept me home and out of the ER. I've been doing things we never thought possible. He does the weekly drsg change for me & life has been as near normal as it can be for us. We even felt motivated to start home improvements last year, from ceiling to floors. We were just going to begin the kitchen cupboards. Might need to rethink this DIY project & get some help!

He truly doesn't deserve to be a part of this club, that no one in their right mind would ever join willingly.

Although I've always been a believer I can't help but question...When did God decide we were strong enough to deal w this too?

We've asked close friends and family to pray for the best outcome possible & we are trying to stay positive & do normal things, but it's difficult to concentrate. We are both attempting to wrap our brains around things so we're prepared for what could be, but still hopeful that the PSA and symptoms can be explained by something else.

Thanks again for keeping us in your thoughts & sending messages of support. I'll let you know when I know more.

~LjK

Hello All,

It feels like a lot has occurred in such a short time. In our notoriously slow system, they certainly moved quickly for him; & I’m grateful.

The Bone scan was yesterday - results still pending, might hear later today or after the weekend on Monday.

Biopsy results: 12 out of 14 were positive for PC - Gleason Score is 9. Further details on that number will follow I’m sure. Need to know bone scan results before determining treatment options.

The Doctor phoned as we were leaving the city. We stopped at the gas station before heading out onto the highway for home & took the call in the storage area! Not a moment I’ll ever forget...ushering him to the back of the gas station so we could put the doctor on speaker phone & have some privacy. We did ok, but then he handed me the keys to drive home. I could tell it was hitting him. Not a drive I’ll ever forget either. Very cold, it’s been a virtual deep freeze this year; poor visibility & lots of snow-covered areas so we were crawling @times. Kept me focused, and from falling apart, but I was screaming inside!! We both knew it was a possibility, but of coarse we were hoping for a much lower score & it’s difficult to get your head around it.

My head & heart hurts for him. He has aggressive Prostate Cancer. My husband has PC & not the watch & wait kind!!

The treatment specialist @the Prostate Center returned my call this morning & we have an appt w her next week Friday. By then all available results should be in and she’ll be able to explain options w/out the emotion that will certainly come from me if I try and do it; & he doesn’t need that from me right now. This Doctor recommended reading everything I could (which is happening already) & writing down questions.

Life has changed for us overnight and we know it’s a road nobody wants to go down, but here we go anyway.

What will treatment look like for him??? How will he handle the information?

I’m still holding out some hope; but each result we get is chipping away @my resolve.

Lots of literature recommends surgery 1st, “Just get it out of there”; start treating with ADT & then targeted radiation or a combo of all three, w chemo thrown in there for some.

For those who have been here...any thoughts on treatment, or things you would do differently if you had to do it over, would be appreciated.

~LjK

LJK, Clearly not the result you were hoping for.
Take heart in the fact that this is a very manageable disease, for a very long time. (Read Todd's comments above, and even his blog, whenever you get down).
Being in a panic is a normal response. You will adjust to the "new normal" over time.
Andrew pretty much gave you the right info. Wait for the bone scan, if its positive he'll likely go on ADT very quickly, and that should stop the cancer in its tracks. ADT is otnfun, but its not as bad for everyone as some of what you might read here. I've been on it for 6 months and side effects have been bothersome at worst, but very manageable

Hang in there, we are with you every step of the way.

20 years ago ... times change and treatment modes have improved. And no two cases are exactly the same. Without mets, you have a different disease than with mets.

Certainly, an improved diet will help - less sugar, processed foods and more veggies will help.

gently - no. Honestly, yes.

sometimes it's best to just rip the bandage off fast and wait for the shock to die down. It's an emotional kick in the head. PC is as much a mental/emotional problem as a physical one. Just be calm and honest. A quiet hug and a box of tissues might be needed. There may be screams or anger. This will test you as much as him.

With ADT, he'll lose hair in unexpected places, not all from the top of his head.

Thanks for your replies.

I will do my best w your suggestions.

This will not be easy!

~LjK.

Really sorry about the Dx. I was reading all your posts and was hoping you get a lower Gleason score.

But you and hubby have to get ready for the fight ahead. Lots of folks on this forum and have been through this and probably toughest part is what you are experiencing now. Once you are in battle you get used to it.

As others have suggested , surgery should not be on the table as a choice, it will only make the journey more difficult.

There’s is a thread for Gleason 9 on this forum and you will find a ton of info there as well.

LadyJaneK said...

It won't be possible w chemo &/or radiation but did any of you work while starting on ADT?

This is generally not true. Let's be clear that there can be the upper-end and lower-end of extremes on how different people tolerate the different treatments differently, but generally people are able to continue working throughout PC treatment.

Radiation, for sure depending on which type you choose; the biggest drawback is having some flexibility in your daily schedule to attend the treatments, and some people take off work to accommodate and/or to travel out of town for treatments. The most common types of radiation require multiple visits, but often men are not even sure if the machinery is "working" because they don't feel much different. Brachytherapy has become somewhat popular largely because it is a "convenient" treatment; you basically miss one day (treatment day) of work.

Chemo depends a lot on the toxicity and response...and there are multiple different chemo blends for PC at different stages. Generally, a strong chemo affects people for a couple days, but then it's weeks before the next treatment...back to work. Be aware of fatigue and "chemo brain"...if you fly commercial jets, you won't be allowed to work; most others will.

ADT can also cause a bit of "fogginess" (and fatigue), but generally people of working age continue to work. No piloting, however.

Most people take about 3 or 4 weeks off work for surgery, but the main reason doctor's give this order is for patients to get their continence under general control before returning to the work setting.


NOTE: I gave the big picture response; next I suspect you'll also get some anecdotal "this is how it was for me" responses...

Post Edited (Blackjack) : 2/8/2019 2:03:48 PM (GMT-7)

The symptom that might improve is his urgency. If this is caused by a PC tumor, then ADT/RT should shrink that and give some relief. Some of the other issues you mentioned earlier in the thread might not be address, but in general, the urological issues should get some relief.

His fatigue might get a bit worse with the ADT, but that varies a lot between men.

While he should be able to keep working, heavy physical jobs are more difficult to maintain while under treatment. He might have more bad days and need a day off now and then. Hopefully his boss can give him a more flexible schedule at first. Likely he'll adapt as time goes on.

Andrew