I guess I don't understand the meaning of metastatic

Wish I could be helpful but there are people on here who will be. Meanwhile, hoping for you that your MO is reading the latest stuff and that the MO is part of a team that shares information.

Your insurance company has more to say about it than anyone...First, you do Lupron followed by casodex. When they stop working, THEN your insurance may consider Zytiga..

Alephnull,
As hard as it might be to do, if I were you , I would see another Doctor and get him or her to press hard for Insurance to pay for that Zytiga
Wings

alephnull said...
No need to respond, just depressed and confused.

I asked my MO about Zytiga.
He said no. He said no because he claims that because the spot on my lung isn't big enough to biopsy I'm not metastatic yet. And this is even though he told me it likely is a PCa met, because of the characteristics of the spot.
Heck, he's the Onc that determined I am BCR.

My surgery showed a positive lymph node, seminal vesicle invasion, positive margins, perineural invasion
I have no prostate.

Hmm, I'm BCR, my PSA rose dramatically last spring after 3 1/2 years.
And this was 18 months after radiation to my pelvic bed and pelvic lymph nodes.

If I'm not metastatic, how did my PSA rise without a prostate?
I guess I'm in f'ing lala land.

darn, sometimes I hate living in the middle of the country where doctors who were at the bottom of their class go to practice. I'm starting to think my MO was a diversity hire.

Or maybe, I have a complete misunderstanding of this whole thing.
Sometimes I really wish I drank.

maybe no need to respond....but feel compelled to do so. thank you alephnull....for such an honest post. You state feelings that are difficult for me to identify. when I'm feeling as you do (which is often...esp lately)...I just get angry and push people away. Your post is helps me tremendously....though.....that doesn't do you much good. 'and it's disconcerting to me that I cannot be of anymore help (if any at all).

Good luck buddy

(and I know what you mean about doctors in rural areas.....I'm southern Appalachia. Docs tend to be big fish in small ponds here...no matter their lack of expertise..)

I also believe you could get insurance to pay. It can be a pain....a full time job...but....with the right help....most anything's possible......the right help being key....good luck)

Oh....and don't this disease make the good 'ol days of escape look tempting lol I know the feeling

Alephnull.
You have a great PSA Curve excel sheet. What are you...a database programmer? ( I read your profile)
Could you do us a favor and show us the overall one since your first Diagnosis?? I bet it looks impressive.

Winger

JNF said...
Frustrating. So we don’t treat now, rather we wait until we know what we think?
And then won’t it be more difficult to treat than it would now?

Frustrating indeed. It makes my blood boil whenever I read of yet another case where someone is denied treatment early on when it might have been much simpler, but instead the doctors wait while the insurance companies insist that you can't be treated until some set of conditions affirm that the cancer is now well established, if not widespread.

Had that not been the case then I would have only a one line signature below... diagnosed and treated, rather than one that extends through several years and represents thousands of dollars and much personal anguish.

schoolpsych said...
alephnull,

I think all of us are with you on how frustrating it is to have every doctor seeming to have a different opinion. It is understandable, I suppose, because unfortunately, cancer is so complicated.

Understandable, but only to a degree. I have met too many MD's on this PCa journey who have strong opinions, based on old data. Many of them are just not current, and fall back on easy and generalized 'standard of care' BS. Infuriating to be sure when they quote incorrect clinical studies or just give you the "trust me" line. Lazy and incompetent.

Be informed and work hard being your own advocates. You life is in YOUR hands.

BTW
I totally disagree with the idea that metastatic is determined by images.
Our wonderful National Cancer Institute states.
"
Stage IV

In stage IV, the PSA can be any level and the Gleason score can range from 2 to 10. Also, cancer:

has spread beyond the seminal vesicles to nearby tissue or organs, such as the rectum, bladder, or pelvic wall; or
may have spread to the seminal vesicles or to nearby tissue or organs, such as the rectum, bladder, or pelvic wall. Cancer has spread to nearby lymph nodes; or
has spread to distant parts of the body, which may include lymph nodes or bones. Prostate cancer often spreads to the bones."

/www.cancer.gov/types/prostate/patient/prostate-treatment-pdq#section/_120

Nice OR statement. Lymph Node spread is one of the branches. Oh, and so is seminal vesicle invasion.

Both of which I'm positive for, also the last scan showed my lung spot.

Alph,
Is there a way to appeal your Med Onc's decision?

alephnull said...
Nice OR statement. Lymph Node spread is one of the branches. Oh, and so is seminal vesicle invasion. Both of which I'm positive for, also the last scan showed my lung spot.

Okay, let's try to parse this...

IFF (has spread beyond the seminal vesicles to nearby tissue or organs)
OR (may have spread to the seminal vesicles OR to nearby tissue or organs) THEN...

Doctors make the WORST programmers. Knowing what we know about male anatomy, if the first condition is true, then the second MUST be true... unless there is some short cut the cancer can take around the seminal vesicles and nearby tissues. By this definition even I am metastatic, which I certainly hope I am not. But the SV's are only stage 3B... OK, this is making my Lupron brain hurt. I knew there was a reason why I retired early... if only I could remember.

Metastatic disease = N1 OR M1

alephnull-

Your positive LN puts you in the stage N1, which is regional. While pelvic LN mets are mets (that is, it is not prostate PC tissue as T3/4 would be), the term metastatic is usually applied to the cases where there are distantly discovered metastases, which is stage M1. Your lung spot would be stage M1c.

You are confused by NCI about the staging terminology, anyone would be. Let me try to unpack it for you:

Stage T4 (note the T and the arabic numeral) refers to cancer that has grown into surrounding organs, such as the external sphincter, rectum, bladder, levator muscles, and/or pelvic wall. T stage shows how far outside the prostate it has gotten

Stage IV (note the roman numeral) refers to the AJCC Prognostic Stage Grouping, which isn't really a T stage system, it is a risk stratification system. In the latest version (8th edition), Stage IV is defined as any cancer that is at least N1 (IVA) or at least M1 (IVB). So Stage IVA is what NCCN would call "regional," and Stage IVB is what NCCN would call metastatic.

The NCI article you referred to is incorrect and out of date (I wrote to alert them). In the AJCC 7th edition, all stage T4 fell into stage IV. T3a and T3b fell into stage III, in which they remain in the new edition. They are IIIB if the gleason score was 6-8, IIIC if the Gleason score was 9 or 10. (In fact, everyone with GS9 or 10 (and not N1 or M1) is now stage IIIC).

Here's an article about the new AJCC system:
/pcnrv.blogspot.com/2017/03/prostate-cancer-staging-update.html