I have Intraductal, Gleason 8, through-the-roof Decipher score .91, so that qualifies me for saying I have APC. But my journey has just begun, and perhaps they caught it in the nick of time (no way of knowing). I see what others are going through and I give thanks for your insights and courage. I also feel sheepish saying I have APC as, compared to many of you I am either 1) lucky, or 2)early.
Time will tell, but I give thanks to the warriors on this blog who are fighting the good fight. Your courage, kindness, and wisdom are inspiring to this newbie.
So sorry that you are here. But it is a great place for information and fellowship. With the numbers you posted unfortunately you do have APC. Could you please share the results of any CT/bone scans you have had. If you have not had these scans yet, pressure you urologist to order them ASAP. You need to find out if the cancer is localized or if it has spread. That is critical when planning your treatment.
Having intraductal sucks. I have Ductal, a related rare cancer. Still not quite sure what the differences between the two. I do not know if the doctors even know. My biopsy report said I had intraductal. The pathology report said it was Ductal. However both suck, are rare, sometimes are aggressive and a bit harder to treat. The big thing to note is that both have a tendency to not always produce PSA (a test of a pathology slide indicated that 30% of my cancer did not stain for PSA.) For that reason I get regular CT/bone scans in addition to PSA tests. Finally, since they are rare, no one knows the best way to treat them. There are not to many of us intraductal/ductal men out there. For that reason my response may be a bit long.
First thing you need to get is information. Listed below is an article published last year:
The second thing to know that there are many here that have survived decades with APC, even intraductal or ductal. Perhaps my story will be of help in not only on treatment options but also to give you hope.
Back in January of 2016 I found out that I had Gleason 8, T3N1, Stage 4D1 Ductal cancer. I elected to have surgery even though it had spread to the pelvic lymph nodes. A year ago most surgeons would not operate if the cancer had spread locally. The thought was since the cancer had spread there was no value to remove the primary source of the cancer. I had to bring in a lot of data showing why surgery was appropriate. (Note last month more data was published showing better long term outcomes with surgery even with lymph node involvement.) If you decide on surgery make sure you discuss with the surgeon what he/she would do if they find lymph node involvement.
My surgery was followed about two months later by a Lupron shot. Lupron lowers your testosterone which prostate cancer needs to grow. Continued use of Lupron can keep the beast at bay for years or even decades.
Two months later, while still on Lupron I then had 38 rounds of radiation. Just about two weeks ago I added Zytiga based on the results from the Stampede trial. Note, you may be a candidate. Information on the a Stampede trial is listed below.
Now for some good news. So far the cancer seems to be in check. I am still active, go on 60 mile bike rides, X-county ski, SCUBA, etc. There is no reason that you can not keep doing the things you love.
The third thing you need to do is to play an active role in your treatment.
Just FYI - i had RP in Feb. PSA (May) is <.008. Completed 15 of 38 radiotherapy treatments to date.
My radiology oncologist suggested (you can never get them to say anything definitive) that if I see PSA rise, he believes I should see a medical oncologist and start chemo ASAP. I believe this is the result of the STAMPEDE and other recent trials. Hope I don't have to make that decision, but I'd go for chemo as first line and then ADT if that fails.
We are all warriors! Good luck! Hope that you do not have to go on chemo. (Note the Stampede trial tested hormonal drugs.). Stay strong during the last half of radiation.
I stand corrected on the stampede trial. I read somewhere there was a study suggesting chemo might be the best first-line treatment for intraductal . Will try to relocate the study
Still haven't located the study. Possibly my rad oncologist brought it up. I intuitively get it the concept. With idc-p fire as many bullets as possible.
No worries. It seems like you have a better team than mine. They keep saying that Ductal should be treated like regular cancer. To be honest it is getting very much old arguing with them every time we meet.
You need a genomic test. If you score high (probable) and have ductal, there are probablyinstitutions that would like your case. Just a thought
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Seriously, my decipherscore is so high, a retrospective analysis of patients that were assigneddecipherscores yielded interesting results, except in my decile(highest risk), there were no followup participants to follow up on. Cohort study was only ~100, so who knows? Somewhat unsettling in any event.
This is where I wimp out on you. I have been asking for a genetic test for over a year. What they say now is that there is no benefit. All of the things I demanded they do will render useless any benifit from the test. Sorry to add to your burden. I am so tired of fighting I would rather it just end.
Seems like the system is screwed up. Insurance companies appear to be willing to pay for a wider range of drugs if one has a high genomic risk profile, yet they are not willing to pay for the tests (which are expensive) to determine one's profile. How screwy is that?
There have to be drug trials that might be very interested to have someone with ductal participating. Just a thought.
In two weeks when I see my MO I will once more ask about DMA testing. Last year my Radiologist contacted 11 pharm companies to see if anyone was doing research on Ductal. Same answer from all of them. No money in it.
I just turned 60. I was diagnosed when I was 58. I have retire medical insurance. Some things, like Lupron and Zytiga they cover. They do not like to cover tests.
The STAMPEDE trial has quite a few arms testing quite a few different combinations. The original arm was the same as the CHAARTED trial, and tested the combination use of docetaxel and ADT for cancer that was metastatic at diagnosis.
This was a trial of moving docetaxel way up earlier in the treatment plan, and it proved to be helpful.
Welcome to our fraternity. Dr.WHO's golden advice on this rare type of PCa and intelligently what you have opted to do so far have already offered us a good learning opportunity worth looking at. Keep us posted on your progress.
Hankm : With the numbers and treatments you have gone through already, it is probably a good idea to seek out a "great" medical oncologist - preferably a Genitourinary Medical Oncologist. Don't know where you live, but such experts in the field of PCa are often found at centers of Excellence such as Univ. of Chicago, UCSF, Memorial Sloan Kettering in NYC, Yale, Duke etc. If you live anywhere within reach of big cancer centers than you should begin to interview with such oncologists and find one you can work with.
I am not saying you need further treatment yet, but the work of your Rad Onc and your Surgeon/urologist are complete and they will not be managing your journey with you from here on out once you are done with your radiation. You want to find a Med Onc who you trust and can work with because they will be with you for the long haul. Just saying...
Thank you Peter-excellent advice. I'm in very good hands at Yale and will ask my rad oncologist for some names. I'll also consult with my urologist as he is really on top of things.
I'm pulling for you also. Since you qualify for this you have a great resource in this forum to get knowledge of what to expect ..This can help you tremendously.. APC is a life changer.Be vigilant and follow good nutrition and exercise , fight to stay positive.It can be a battle and you will be tested to your core. Like that old poster from the80's with the kitten hanging by its nails """ Hang in there baby! With determination to heal yourself and a little luck you can stay on top of this bastard APC .Not to be negative..But it's a formidable foe .Im 2yrs into APC and for 1yr. No visible signs.From Stage 4 Gleason 8 non-op mets ,and APC tumors shutting urethra off and putting me near death in kidney failure.I had 2tubes out of kidneys in to bags for a yr .The things that can "possibly " happen due to APC can be horrifing.Dont think about that..I am not down playing your status all ..All APC is deadly serious. But if I can go into an drastically improved condition so can you. There is no cure for APC ..Do the best that you can ..That all any of us can do anyway....
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Thanks so much lulu. You have been through hell, yet you keep getting up when punched to the ground. And I can't tell you how much I appreciate the advice that you, dr who, and others give to those of us that could be on the precipice.
My eyes are wide open because of this board. Hoping for a good outcome but prepared for anything. I also am realizing that right now in this moment of time I must thank my lucky stars and enjoy the day because one never knows what tomorrow will bring.
Hankm
No , thank you! Don't look down! As they say ,don't get stuck in fear ,although it all can be freightening,especially not knowing fully what's going on .You sound optimistic and grateful. Those quality traits will get you thru just about anything.I owe you thanks for your good spirit..You cheered me up. Thanks!
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