don't want treatment, what's ahead for us?

I get a numb chin a lot, but I think a lot. Thimk Rodin.

"same time, a cattle-call. It is honestly a horrible way to manage patients and, I believe, just a small peek at what Obamacare (or any socialized medicine) provides."

Not really, this is what the current FOR PROFIT mess is

If the symptoms are actually "numb chin syndrome", that's serious. That condition is due to metastatic disease affecting the mental nerve (a sensory nerve to the chin). It's caused by metastasis to the jaw, skull base, or to metastatic spread to the subarachnoid space around the brain. Should get it checked out quickly.

Break60,

I have a Gleason 9. Gleason 9 is notorious for low PSA production. I decided soon after surgery, that once I spotted a trend in PSA readings, that I was going in for SRT. I considered kind of delayed adjuvant. I decided that it was better to hit it hard and early than to wait until it was .2. If the G9 PSA is unreliable, it could be that a .2 is equivalent to a 5 or a 10.

Some of treatment has a time element as well. If surgery bought me 4 years, and I can get another 2 or 3 yeas from SRT, then get another 5 or 6 from HT, maybe by that time a new treatment or drug will surface to help me for the next 10 years.

This is an individual decision. I have consulted with Stephenson of Cleveland Clinic who has done some studies of when to begin SRT, and it's effect on treatment.

Goodlife

What a coincidence, his crown broke down and needed to be replaced. This happened 2-3 days after the numb-chin started.

The doctor even said numb-chin was a virus and she hadn't heard anything about it in a long time. She gave him anti-viral RX.

Will wait and see. Is it the tooth, a virus, or, warning of mets.

Inchoation said...
...........
This question has rolled around in my head plenty since my surgery especially with my downgrade to G6. Would no treatment really offer me any better life expectancy than surgery? Impossible for me to know but I wish I'd had the chance to know prior to my surgery I was a 6 than opposed to after when it was too late and the decision was wrested from my hands.

But isn't that the real kick in the balls with this disease: how could you ever know that you were, in fact, a 6 without having the surgery? And they could have told you you were a 7, or a 6, and if you had the surgery you might have instead been UPGRADED to a 9 or 10! It could have gone just the opposite than it did for you. Point is: without the surgery you would have never known. Now whether it is definitely a good and helpful thing to know is a different discussion.

I keep telling myself: Self, If you had only been a 6, I would def not have had this surgery and maybe not even radiation. I would watchful wait and do what I could with alternative approaches. But if I had been a 6 on Bx, I would not really know that I was only a 6, would I?

I was in fact upgraded in a way: not my Gleason 9(5+4), but SVI+. My surgeon, based on his DRE, really felt good about my chances of it being contained and thus offering me a cure. One of my main reasons to go with the surgery: so that I could know, and IF contained a probable cure. But though my nodes were neg, I was not contained, it was in the SV. So my probable cure is down to a lower chance now. But if I had gone RT, we still would not know this for quite a while, and then only if things did not work out. I guess watchful waiting was out of the question with a G9(but maybe not according to the OP), but who knows my G9 could have been downgraded and really been a 7. Still, only one way to know.

As much as anything else, I hope for future PC patients, they have a better means of diagnoses. The PSA ain't much, but it's all we got. The Bx is even worse, just look at how many men have 2 and 3 Bxs before finally getting diagnosed with aggressive PC. You know they had it the whole time once the PSA started rising, but multiple Bxs missed it.

Myeverything, you don't know if it was a G7 or G9? I have recently learned that the 4+3 G7s are a lot higher risk than the 3+4 G7s, really very close to the G8s and 9s. So if he is a 3+4 G7, his out look calls for a lot more years than the others, and he is more likely to die from something other than PC, at least for quite a few years more.

But here is a link to a study of conservative treatment of G8-10 compared to Radiation and surgery. Although, among the "conservative" about 40% still had Hormone therapy, as did your guy. Still, looking at over all survival, looks like about 30% in the conservative group survived about 10 years, with about 15% of the guys who had additional serious health problems still alive past 10 years(presumably most of these sicker guys died of other than PC). The author quotes other studies which show a range of about 13-40% longer term survival. As for a PC specific death rate, in the conservative group, either 10 or 15 years later(can not figure out which) 43% had died of PC.

What this does not tell us is: what is the quality of life for those who actually survived 110(Edit: I meant 10 years, 110 is probably a bit optimistic) or 15 years with little treatment? Was there much pain, for how long, etc. Even for the 27% ( in the conservative group) who died of other than PC, did the PC cause them a lot of problems before they died of something else? I do not know.

Bill

Post Edited (BillyBob@388) : 3/26/2014 7:10:11 PM (GMT-6)

Transfer this post in your mind to the Theory thread My mind is fried. apology to my every thing

Good morning everyone,

Update:

Yes, he had a biopsy and also a 2nd opinion on the biopsy, I think that's why I say 7 & 9.

I am always reading about PCA and this morning, saw some studies that Metformin (for diabetes) can have a positive off-label effect on PCA. Just thought I'ld mention that,now. I'm going to suggest we look into it.

We take a lot of supplements. I guess I'm just rambling. He takes beta-sitosterol which has helped him, very much, minimized going to the bathroom at night. He might go once or twice now whereas he was going 4+ times, before.

And, something we've noticed. Viagra & Cialis give him headaches and are very expensive. A pharmacist suggested Sildenifil as a generic. It is much cheaper and no headache, and, not so draining as the other two.

However, we're starting to notice that on the days of Viagra-type, he will go to the bathroom about 4+times we we think we're seeing a relationship.

How's he doing, you ask! Pretty much the same however, I notice his energy level seems to be just a little lower but we are both doing everything we've been doing for the last few years. Age, personality, PCA, everything.......Hey, I was doing hand-stands 2 years ago and wouldn't think of doing one today. Am very disappointed about that but don't seem to be doing anything about it.

We had another blood test about 2 months ago and you will be shocked, as we are. His PSA has been about 147 but, with the last test, it was over 450!!!! I'm sure I hear the group-gasp! No, I'm not making light of any of this, he is truly my life. We know it's a bio-marker, and are watching all details on a daily basis. I know a man whose PSA was 800+ at one time and his life, at that time, was pretty much the same.

He still has the numb-chin. We liked the antibiotics better than the antiviruls but it's not gone and all of my research points to mets. Funny, the doctors & dentists don't seem to think of this but it's all over the net. We're talking about it because eventually, the doctors will probably want to do a radioactive-dye for diagnosis and radiation. We don't want these, anymore. However, we're watching every day and it will depend on over-all health, ability, pain. We can change our minds if we think it's best.

So, that's the latest with us.

myeverything,

That is a shocking PSA but we've seen higher. How fast is the doubling time?

If you would like to get an idea of what the future may hold, I suggest you look at the Yananow site (you are not alone now). Here is the link: Yananow
The site has hundreds? thousands? of men's stories and can be readily sorted by date, PSA, age, gleason score, years since diagnosis, etc. You can do a quick search, for example: PSA between 200 and 299 and diagnosed 5 years ago, to see how many are still around and how many are not. In this example 5 men were found, 2 were still in treatment Ages 60 an 62, while sadly, three were not (RIP) ages: 42, 50, 54.

The stories are informative. You might not like what you see there, but I do believe information is power.
I wish you both well.
Jeff

Good morning everyone,
I just posted this in the 'caregivers' forum and wanted to share the latest with you.

We're still here. I've thought of you often have checked-in and still read your stories.

I think I last left off with my report about the numb-chin, the MRI showing no metastisis. We've been back to the doctor to get a crown and still don't know the answer. His chin still gets sore and numb but not serious, not consistant and rarely requires anything for pain.

We thought we were doing fine until 5/5 when we made a commitment to eat like we believe we should. Even though we have nutritional backgrounds, we had gotten far off track enjoying ice cream and common treats. We went back to fresh, raw, almost vegetarian with eggs & lots of salmon. The first month was exciting as my husband lost 25 pounds, starting at 326 with low BP and good pulse.

Pound 26 changed everything and I think the cancer took over and it's been downhill. He's lost about 120 lbs since. Somewhere in June & July he started having endless aches, pains, low fevers, everything he ate turned to disabling gas, lost his appetite. He has started to eat more but it's still a battle not knowing if it will turn to gas or not. He rarely has any fevers but he still has daily headaches and body aches.

I told our new doctor (and showed my research papers), I thought he had cachexia: the 'wasting away', but the doctor said no. We'll see. We like the new doctor and are hoping for the best. Our last doctor was absolutely awful. She wouldn't follow-thru with our agreements made during our visits. Then, wouldn't return our, or pharmacy, phone calls. I'm so disappointed with this welfare, cattle-call healthcare.

Our last blood test showed poor GFR numbers for the kidneys so we had an ultrasound last weekend. Even my untrained eye could see the difference between the healthy kidney and the other.

He's still not taking any traditional protocols but our QOL of greatly changed. I've found a wonderful cancer support community in Redondo beach (cal). It was said we might get a 2nd opinion and be able to maintain the cancer at a chronic level. I think we're going to look into this and I'll report back.

Best wishes until then.