Hi ! Newbie here. Husband was diagnosed back in June and had robotic prostatectomy in mid-September. The procedure was smooth and his recovery has been problem-free, except for the ED and incontinence issues. The incontinence issue has been practically non-existent which has been a very pleasant surprise. He is 61. No history of prostate cancer in either side of his family. In fact, he has ZERO of the factors usually associated with prostate cancer. This has been such a shock to us. He is handling it wonderfully well so far. We are trying to read and educate ourselves. It is admittedly quite overwhelming. Where to start ??? I should add that I am still trying to get/use the correct terminology, etc. as a quick summary : he is Stage 4 (metastatic/involvement in two of the four lymph nodes that were harvested during the prostatectomy). Scans were clear (for bone mets/organs) as of July 21. He received his first injection of Eligard on Sept.27. We had to wait for insurance to approve the Prolia injection and he got it (the injection) today. The plan is to have the Eligard injection every four months and the Prolia twice a year. Should we get an oncologist ??? A team approach makes sense to us. So far, we have only seen the urologist(s) located near to us. We are retired and willing to consider going elsewhere for treatment/guidance/clinical trials. I would appreciate ANY thoughts or advice. Thanks so much. p.s. Vanderbilt and UNC Chapel Hill would be the closest university settings for us, as we are located in east Tennessee.
Looking for some guidance... - Advanced Prostate...
Looking for some guidance...
Welcome to our group! I know you and your husband will get lots of insight and support on this site. We were all ‘newbies’ once...
Definitely recommend getting an oncologist who specializes in Advanced Prostate Cancer. I am treated locally in Atlanta, but travel to MD Anderson in Houston, TX every 6-months. They, and other teaching hospitals, provide access to the latest treatments and clinical trials. There are a number of other excellent hospitals to consider - Sloane Kettering, MAYO, Cleveland Clinic. Perhaps some folks on this site can provide specific recommendations.
Education is key. I recommend you read Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. Make sure you get the latest edition- it is a definitive guide that explains the different phases of PCa and many of the latest treatments.
We are here for you and your husband during this journey. There is much to be hopeful for. Many new developments and treatments are now available and more on the way.
Best wishes,
James
Thanks so much for your words of welcome and encouragement. I have ordered the book this morning. I appreciate the heads-up on getting the latest edition. Education truly is the key.
Happy to help.
Another thing a lot of us want to learn about is the role of diet in fighting cancer. A great book is Anticancer, A New Way of Life, New Edition by David Servan-Schreiber. You can get it on Amazon, too.
There is also a movie on Netflix called The C Word. Very informative and 1/2 of the movie features Dr. Servan-Schreiber. He has an amazing and inspiring story.
Best,
James
"Should we get an oncologist ???" Yes! Without a doubt, the best one you can find.
Thank you ! And we have begun the search THIS MORNING !
In my opinion, once your cancer moves outside the prostate, it's time to move from a urologist to an oncologist.
I would suggest you look at the results of the STAMPEDE, CHAARTED and LATITUDE studies which show early use of either Docetaxel chemotherapy or Zytiga can add just over a year to overall survival (median).
ncbi.nlm.nih.gov/pmc/articl...
Personally, I prefer the 6 cycles of chemotherapy because it goes after all the cancer cells, not just the hormone sensitive ones. I did it earlier this year with good results. My PSA went from 463 to 0.19 in around 6 months.
Many others here have also done early chemotherapy with good results.
Talk to your oncologist about it. Good luck with your treatments and keep us posted.
Thank you, gregg57. We are a little slow on the uptake. It wasn't until we had a really awful meeting with his urologist yesterday that it smacked us in the face that it is SO time to move on. We are very pleased with the urologist's surgical skills (RP/daVinci robot), but wow, as far as moving forward, he says hormone therapy. Period. That's it. No discussion. So yes, we WILL be bringing in an oncologist. ASAP.
Sounds like you need to move on from this urologist.
To give you a little history, ADT (hormone therapy) alone was the old "Standard of Care" until recently. In the past, chemotherapy was saved until patients were castrate resistant. At that point, chemotherapy is not nearly as beneficial. But the value of using it early on was only discovered recently. Even more recently, the second-line hormone treatment Zytiga was also found to have a similar survival benefit. Any oncologist that doesn't know this is unqualified in my opinion. I read somewhere that in the US, oncologists are required to discuss the results of these trials with prostate cancer patients. I'm not sure that is correct, but it should be that way as far as I'm concerned.
I would really recommend doing early chemo if you don't have any medical reasons to prevent it. Give yourself the best chance of winning this fight. It's not that difficult for most people and it's over fairly quickly (18 weeks with no complications). For an gain of 13 months (median), for me it was an easy decision.
Here's a quote from the findings of the CHAARTED trial, the first trial to demonstrate the value of early chemo.
"The median time to progression was 20.2 months in the combination group, compared with 11.7 months in the ADT-only group (HR, 0.61; 95% CI, 0.51–0.72; P < 0.001). Approximately 27% of patients who received the combination treatment demonstrated a decline in prostate-specific antigen (PSA) levels to less than 0.2 ng/mL at 12 months compared with 16.8% for those taking the single therapy (P < 0.001), according to study findings. The trial was designed in 2005 by the Eastern Cooperative Oncology Group (ECOG), which is now part of ECOG-ACRIN."
You can get lots of support here from many of us who have gone through it successfully. Lots of experience here.
I wish you the best and hope you find a good oncologist that specializes in prostate cancer.
Sorry to be late in this thread, but try finding an Onc who knows something, anything about PCa.
We were sort of taken aback when the urologist would not even entertain the mention of any other options open to us. Sheesh. But, it is really a good thing it happened, from the standpoint of pursuing more aggressive or up-to-date treatment. I am already learning a lot from joining this group. All the info you have shared today is very much-appreciated. Thank you.
In 2013, I was stage dx with stage pt3b Gleason 9 PCa after RP which means PCa was found in my seminal vesicles which are near the bladder neck (base) where I had a positive margin . But none was found in my pelvic lymph nodes which is the area where PCa tends to spread first. When my psa went up to .3, I had my prostate bed radiated in 35 sessions along with Lupron for six months. This was standard practice. then went up to 1.3 and I had an MRI which found two suspicious iliac lymph nodes so I had ALL pelvic lymph nodes radiated in 50 sessions along with 13 months of ADT3 by a RO who treats nothing but PCa, Dr Dattoli in Sarasota. Since if PCa was in two lymph nodes it was likely that there was more so the entire pelvic lymph node system there was treated. Obviously I stayed in Sarasota for a couple months. No PCa has been found in any area treated since. But after stopping ADT3 my Psa went up again and at 2.3 I had a CT pet scan with axumin which found a small lesion on my right femur which again I radiated but this time with SBRT which is high dose RT which allows fewer sessions, in my case just three. I also went back on ADT3. My PSA is now <.1.
I tell you this because there’s different ways to skin a cat. My PCa has surfaced in different places each time and not returned there after treatment. My philosophy has been to kill any cancer that surfaces and use ADT3 as systemic treatment. FYI, ADT3 is Lupron, bicalutamide and avidart. I chose not to just rely on systemic treatment because it’s palliative not curative. I may be kidding myself but I believe in killing this beast not just taking away its food.
Bob
Wow. It does seem to make sense to try and kill the beast. That's what we tried to discuss it with the urologist and his lack of response was the "ton of bricks" we needed to have dropped on our heads. I am glad you have had success in your course of treatment. And thank you for sharing your experience.
Yes many will say radiating areas beyond the prostate is a waste of time because once it’s escaped the prostate there’s cancer in the body you can’t see. Also it takes great skill to do it and many ROs won’t try it. Good luck
Bob
When we met with the urologist this week to discuss treatment options, we asked about doing additional (more sophisticated) scans. Jeff's scans were clear (bone mets,etc.) in late July. But as I mentioned, his RP didn't happen until Sept. 13. So we didn't think it would be unreasonable to see what, if anything, has changed since July. He said we certainly COULD get scans, but that even if there were bone mets, radiation would be of no help. He said radiation is only for pain resulting from bone mets and that chemo is the option when all else has failed. That info seemed very different from what I had been reading and researching.
chemo is the option when all else has failed. Definitely "old school" thinking. Early chemo or Zytiga is the new Standard of Care for MPCa. Sorry, but he needs to get up to date with treatments.
Bob,
I have to say that I am surprised and impressed by the success you have had with such aggressive treatment. I hope it continues. You are in a kind of clinical trial of just one patient.
Have you considered additional systemic treatment, e.g., adding chemo, zytiga, or just Casodex and/or Avodart in order to try to really nail any micrometastases?
Whatever happens, please do keep us informed.
Best of luck.
Alan
Alan
I don’t think of what I’m doing as a one man trial since others are doing it.
I’m following the advice of Dr Dattoli who is an advocate of focal RT and Dr Snuffy Myers regimen which includes metformin and a statin (which I was on prior to dx) and triple blockade of Lupron , casodex and avodart as well as vitamin D3 and calcium etc.
I’ve been holding off on the next gen ADT, immunotherapy and chemo as long as what I’m doing is working.
I haven’t hired a MO yet since my urologist can administer Lupron and xgeva.
Bob
My impression of Dr. Dattoli is that he's managed to cure some people that everyone else had given up on.
I think you're in good hands. Best of luck with it.
Alan
Dr D has indeed taken on very tough cases. He and his staff who’ve been with him for decades know prostate cancer . He treated Snuffy Myers which is why he recommends drugs like metformin and others. I believe he’s recently added SBRT to his regimen. Very competent RO who started out at MSK .
Bob
Hello Jscjac,
You've come to the right place for information and camaraderie.
With Pca it's like real estate, there's three things to look for "a good oncologist, a good oncologist, a good oncologist",
Good Luck and Good Health.
j-o-h-n Sunday 11/12/2017 3:29 PM EST
As most everyone has said -- yes, oncologist. Find one who is local and *listens* to you and your needs, questions. Then it is also a good idea to get a consulting oncologist -- a researcher-type who specializes in prostate cancer. Try centers that are close to you -- Vanderbilt I think has a big cancer center so that's a good place to try? Also, I think Duke has some options. The "uber oncologist" (as we call ours) is really on the cutting edge and will (should absolutely) work with your regular oncologist, who will see all kinds of cancer types. Our regular oncologist likes having the resource. (This is at it should be.)
Urologists really are limited for prostate cancer to early stages. Once you've hit Stage 4, you do need a medical team.
Always remember you deserve answers.
Best tip. Get yourselves a nice book and keep notes of every appointment. We also use ours to prepare for appointments, to write out questions we have so we don't forget. It has been an invaluable. We can figure out when scans were done, when he started a med, etc.
Sorry you are joining this group -- but it is a very supportive and informative place.
And don't forget to take care of yourself too. As your husband loses his testosterone and as the reality of his situation settles in, his mood may change (or oscillate). And even if not, there is a lot that is "on you" too -- so do good things to take care of you.
Thank you, Caring7. I am glad I found this group.
I think it is a good idea to get a second opinion. Don't overlook hospitals that are national cancer centers. I think there are 2 or 3 fairly close to you. Vanderbilt is a national cancer center.
Hi JSCJAC:
Welcome to, sadly, is a growing group of prostate cancer fighters. I just read through all the replies to your original message, and without being too redundant, let me reinforce the advice to get a good Oncologist on the case, and keep up with results from other patients along with news of future treatments. There is always realistic hope for a long life ahead.
My main feedback to you is that it's a long process - lots of possible treatments, and more in the pipeline....so don't get discouraged or depressed. I used the CYBERKNIFE focused beam radiation back in 2008, but the cancer stayed in my bloodstream, so I had hormone therapy and several expensive pills and most recently the PROVENGE immunotherapy treatment to fight the disease and to extend my life...that's almost ten years with the cancer, and I have at least 2 more years of life left even if chemo fails, when I start it shortly. I live by myself, can still drive a car, and even play golf. No disabling symptoms. So no need to feel trapped or desperate, as your hubby will be around a long time. Fret not....don't panic.
Good luck and best regards
Ron Pavluvcik, Shelton, CT 203-767-1123
High grade prostate cancer: Large Tumor, High Gleason (9), Low PSA. What next?
need some guidance, feeling desperate..
Looking for help
Is another MRI needed? 
Increase in PSA
