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

LadyJaneK said...
I've read the ADT often helps w certain symptoms, creates others, but do you feel better after?

~LjK

When you have a Gleason 9 and if you have bone mets, you don't have to feel better. You want your PSA to drop to zero & you are thankful to be alive. Feeling ok is ok with me. Some days are great and some days bad. I'm glad to enjoy them all.

LadyJaneK - Welcome to the G9/10 Crew, the least favorite chapter of the club no one wants to join! Your husband is fortunate to have you here, researching and supporting him. This disease can be quite upsetting for guys, since it attacks the very core of our "manliness", if you will. The first few days are the scariest, especially if you've been searching online with the numbers in his diagnosis. Keep in mind a lot has been developed and learned in just the last few years. A lot of what you find online may be rather outdated, so don't push the panic button prematurely!

Here's a link to the 4th thread of a continuing series. In its first post there are links to the prior 3 similar threads, and you may find it useful to look through the posts for those in similar situations. Did the biopsy results say whether the G9 is "4+5", or "5+4"? It isn't much of a difference, but if the 5 is first that's "primary type 5", which some studies also caution merits the most aggressive treatments.

The Gleason 9 and 10 Crew - Welcome and how ya doin'? (Part 4, continued thread)

Next up should be a staging evaluation, probably by a multiparametric MRI. With a PSA that high, and a G9 case, odds are good that this has already escaped the prostate. If so, the staging study should help you know if there is local advancement, or maybe even metastases (let's hope not). If metastatic, there is debate about treating the prostate directly, or going solely with systemic hormone therapy / chemo. If it has spread, as Stage 3 or 4, then surgery isn't likely to be curative. I ended up with radiation and hormone therapy, but your doctors will look at his overall situation to decide the best combination treatment.

All the best, and please stay with us. No doctors here, but we all have varying degrees of experience to share.

Hello All,

Cyclone, your post came exactly when we needed it!

My husband has been handling this PC/Gleason 9 diagnosis with such courage. Yesterday I could tell he was reconciling things in his brain. Today he surprised me & was ready to hear what his diagnosis meant & about the treatment choices recommended. It really is a lot of information, & I knew it wasn't going to be easy, nor would it all sink in first go round; but it went surprisingly well. I found this site which is updated regularly & it guided the discussion a bit. I suggested he read it & refer to it on his own time & he will.

https://www.uptodate.com/contents/treatment-for-advanced-prostate-cancer-beyond-the-basics?search=prostate%20cancer%20treatment&source=search_result&selectedTitle=2~18&usage_type=default&display_rank=2

After confirming we are going to figure this out & putting a positive spin on things, your post came in Cyclone & I handed it to him to read. So thank-you!

And thank-you to everyone else for all your posts, they have carried me some days.

This week & the future will have its challenges, but I am feeling more optimistic that we will find our way through this. ~LjK

Yup, I've encouraged that. One step @a time He doesn't really like the computer or his phone. He prefers to be in the garage w his tools & cars.

G9 here, 11 months has passed since my diagnosis -- here to offer my words of encouragement and share a bit of my journey.

I had 3 months of ADT before radiation (will be 18 months ADT total), then IMRT (five weeks, 23 treatments), then Brachy seed implants. I was able to work through the entire radiation treatment. My side effects from everything has been pretty minor and definitely manageable. Thankfully, CT and bone scans were negative. However a bone density test as a baseline before ADT (which can cause bone loss) showed I already had osteoporosis, so I have two years of Reclast infusions given every six months.

I can tell that I likely have diminished muscle strength -- but some of that is on me as one is encouraged to work out to stay ahead of this as an effect, but not being a gym rat, I've ignored that.

My wife (40 year anniversary three weeks ago) was very scared initially, but we've both put fear and uncertainty behind us and optimistically pressing forward. My doctors think things are going well, but with PCa, and particularly with radiation as a primary treatment, it's a slower path to nadir (the low point of your PSA) and a definite long game to see if there's no reoccurrence -- ie you're not going to be able to say "I'm cured!". But, you can and should believe "I'm cured!" -- and that's the path I'm on.

Your husband is blessed to have you there to support him -- you guys will do fine!

Great news, LadyJ!
Sounds like you have a treatment team that's on top of things.
Best wishes,
SP.

LadyJaneK said...

Hello CAdogsRus, wish we didn't have this reason for meeting online. Very good to hear your journey so far & how you're managing w treatment, & that I am not the only concerned wife around here! I think getting some good news & the beginnings of a treatment plan underway is helpful.
How did you determine your treatment plan? Just wondering did your Doctors offer surgery as an option? I've read in some G9 cases they sometimes do. It seems there are very different views on this point i.e. risk of surgery and you still often have to follow it with radiation, more or continued ADT & chemo. Each case is individual, but If it doesn't give you a better OAS then why go thru w risky surgery. ~LjK

Good news on your bone scan. Hopefully, the MRI shows the tumor seems confined to the prostrate.

As to deciding to not take a surgery route, no one on my team (UR + RO + MO) pushed one approach over the other (i.e. radiation vs surgery). I had considered surgery as a G8, but between the second opinion from Epstein came in at G9 and my research on treatment options, it was clear to me that the "triple play" of ADT + external radiation + Brachy boost was the best decision for me.

One thing I should note that my sex drive is basically zero from the ADT -- but for us, at 40 years of marriage, not really an issue as our relationship is much more than sex. So, the bedroom does take a hit from this disease be it ED side affects from RP or lack of interest from ADT.

But overall, 11 months into a G9 cancer diagnosis, I'm happy that treatment has gone well and much more appreciative of overall how blessed my health and life continues to play out.

Be positive, take it as it goes, and keep moving forward.

Lady Jane,

Is there an RO on the consulting team? The reason I ask is the constant bias that we see all over: Urologists are surgeons, and they will almost always recommend surgery, regardless of the severity of the case. This isn't to say that they are wrong--but they don't generally want to lose out on work.

Someone above talked about the "triple play" option, of ADT + External Beam Rad +"brachy boost", which is a front line treatment for high risk cases that have a high likelyhood of having escaped the gland--which is a high probability in your husband's case, regardless of what the scans show.

In the end, however, we all go with our guts, based on what we are told, what the doctors say, how they say it, and what we are comfortable with. You're getting good info, it sounds like you're with a good team, so keep us posted and know that we're here to support as best we can.

LadyJane, so sorry about the diagnosis. Glad the bone scan was clear and treatment has started. My husband is also a G9, diagnosed in August. He chose the surgery option and is now on ADT and will be going for his radiation consult in about 10 days. The guys here have given you all of the medical information, so I have little to offer there. This forum has been a Godsend for me - my husband doesn't like to post - he has left a lot of the researching to me. The information and support here are beyond compare. What I can offer, is the perspective of being the wife. The time of diagnosis hits you like a sucker punch - we have been through all of the stages of having our lives change overnight - anger, grief, and finally acceptance. In the early days, I had waves of anxiety and fear, sleepless nights, and the stress of holding it together so as to not add more stress to my husband. His coping mechanisms are far better, he is great at compartmentalizing and putting things on the shelf in between appointments. Following surgery and the G9 diagnosis (initial biopsies were 7 and 8's which were horrible at the time - oh how I wish we had those numbers now), were up and down with anxiety and emotion as we waited on those first post-op PSAs. He held steady at 0.06 after surgery - not at all encouraging. Then the Axumin PET scan which came back negative - our first positive in what seemed like several months of bad news. Once he started ADT we got our first <0.04 - so nice to see that little sign - again a little disappointment at the next check - we lost the < and have a reading of 0.04 - I'm trying not to obsess about that. We have finally accepted this is our life now and it's going to be an up and down journey. We're praying that treatment will keep this thing at bay for the next 10 years or so - hoping to get to enjoy some retirement in the near future (I'm ready now, hubby is not). I still have moments of anxiety, but at the end of the day I realize we all have an expiration date and just need to live while we're alive. Reading and posting to the forum definitely helps with the ups and downs. My best to you and your husband as you begin the journey. You've started the treatment path and I found that once we were finally on the treatment course the stress eased a bit. Prayers that both of our husbands will have good results and tame the beast for many years to come. The anxiety and stress will abate slowly over time as you adjust to living with PCa in your lives.

LJK - There are quite a few people here including myself that did not have significant incontinence after surgery and quite a few that did not after radiation. I cannot explain why some are lucky and some are not and the doctors are little help with this analysis since no one knows for any particular person.

LadyJane, it's good to look at the long haul--but hang in there, and take it one step at a time. Permanent castration is step 100. You're on step 6. You have a lot of steps to take until THAT particular decision is needed--and it may never be.

Some men do ADT for a year or two--and then take a holiday that never ends. It's just impossible to predict. Just like some men have miserable side effects from surgery--or radiation--and some don't. We can only work with the light we have--and make decisions based on the information we have available to us.

LadyJK,

There have been a few discussions of orchiectomy in the time I've been following this forum. What I recall reading is that because it's irreversible, it's only worth considering if (1) you need to be on lifelong androgen deprivation, (2) the cost of lifelong chemical castration is prohibitive, or (3) you live in a place -- usually a third-world country -- where ADT is not always or reliably available.

I've been on ADT for one year, and will finish next month. For me, the injections have not been difficult to tolerate. The side effects, esp. hot flashes, are quite annoying, but your husband would have them after orchiectomy as well. My copay for each 3-month injection, on a Blue Cross/Blue Shield plan, has been $150, also tolerable. I could see where someone who needed lifelong AD with 20+ years ahead and facing a couple of thousand dollars a year for Lupron might opt for orchiectomy, even in the developed world. But you're not there yet, and hopefully won't ever reach that point.

--SP.

Thank-you all for your responses & being honest. Helps to hear first hand from you as we muddle through this phase.

My husband took his 1st dose of Casodex today. Waiting for the MRI appt.

We saw the treatment Dr & got our first look @my husband's biopsy report yesterday. Diagnosed PCa G9 high risk/high volume. Wasn't the unbiased meeting we expected though. Basically told us if the MRI shows mainly contained, they will want to do RP & likely EBRT & ADT after; & it's in too much of the surrounding tissue it will be EBRT & ADT. Acc. to her this PC center does not use brachytherapy on high risk b/c they haven't found it effective?? My husband said he'd like to hear the opinions of an RO on this, so we'll set that up.

She explained the RP surgery well, & what's involved post-op & possible complications & b/c my husband really hasn't read anything yet, there were a few surprises for him! She also made ADT sound awful, so he was not eager to start his meds today! I sure hope he's one of the lucky ones & doesn't have too many side effects from it.

Has anyone else in the G9 group been told that about brachytherapy?. ~LjK