need advice

Hi everyone. Writing to ask advice. I know the dr is supposed to be your guide but when you feel uneasy its best to ask I think. Husband had the surgery to remove prostate, robotic. PSA is now up to a 1.02 less than a year out. Was told he would "eventually" need the shots of Luperon? His gleason was nearly 10 on post pathology reports. Being aggressive do any of you think waiting is a good idea on shots? They have him set up with a appt in Vanderbilt in August for a bone scan and new PSA that day. This being March that really bugs me. I have heard about a choline test you can get in Rochester , asked about it, they told me its too early? My daughter works for a urologist, his thoughts, no I wouldn't wait, id get shots now , he said he has to get them anyway no risk if it were me. So I am throwing this out there, maybe someone can explain it to me . He had some cancer cells in one lymph tissue sample after surgery , they had originally thought it was contained. I would appreciate any thoughts you have. PS, everyone tells me this Dr Smith is one of the best drs in the South , just really riddled why he would wait???

19 Replies

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  • I would go with my gut Benhelper. Get a 2nd opinion . The folks with knowledge will respond soon ;) Good wishes.

    Jackie

  • thank you Jackie.

  • There are a couple schools of thought on this, so I would expect you will hear both. For some, the idea is to avoid the dreaded "castrate resistant" status at all cost, and it's their thinking that you can't become castrate resistant if you avoid ADT for as long as possible. For others, like myself, ADT (of which Lupron is one type) will help slow the development of PC for a vast majority of patients. So why would you not go on it as soon as possible? My status at diagnosis was similar to your husband's, and I asked for my first injection at my 3 month check-up after surgery. That allowed us to see what my PSA was post-surgery without the Lupron and then after. So I'm in the pro-ADT camp for aggressive cancer.

    The one thing to remember is that PC is slow advancing for 80% of men who are diagnosed. So in those cases, a 3 month delay or even 6 month delay isn't too unusual. Most urologists and oncologists think nothing of 3 months. Of course, when you are on this side of the table, 3 months seems like forever.

  • thank you for your reply. Weighing all this out in our hearts here. We just want to do the right things.

  • So sorry that you are here. With the prostate out, the only source for PSA is if it has spread. I would (and have) start on hormonal treatment sooner than later. Waiting just allows the cancer to become more entrenched. From what you stated, he was similar to me. For me, I wanted agressive treatment. I had my prostate and 14 pelvic lymph nodes removed last April (one being "100% cancer"). My PSA went to <0.1 in about eight weeks after the cancer. Instead of waiting for my PSA to rise (which is not a guarantee as the for I have does not always show with PSA). I started a two year treatment of Lupron two months after the surgery and finished 38 rounds of radiation to my pelvic area last October. My PSA is still<0.1.

  • We really are leaning to asking Vanderbilt if we can get started sooner than later. thank you.

  • My husband patient of medical ONGOLOGIST dr. David Chism at vanderbilt ingram cancer center. We live in Alabama. Being treated with xofigo (radium 223) for MCRPC and multi bone mets. Nuclear radiology at cancer center administering xofigo. Excellent care there

  • My husband was operated on at Vanderbilt as well. Dr Smith did the surgery, he has performed over 7,000 of the robotic removals, we were told at first it was contained, after post op exam of tissue they found some in some lymph tissue. Did your husband have his prostate removed? Just wondering how you get a oncologist on the case through Vanderbilt. We live in Lower TN.

  • So sorry - just read your question. Referred by our ongologist at Clearview cancer. I would call The Ingram Cancer at vanderbilt & request an appointment. Our ongologist is Dr.

    David Chism.

  • Radical prostectomy in May 2012. stage 4 - Gleason 9.

  • Hi Benshelper,

    Having a PSA of 1. anything, is pretty good for a year out from surgery. Especially, with the aggressive G scores. Me too. My psa vacillates from 1 to 1.4. I'm very happy with that. I'm on Lupron with Zytiga. You won't be put on anything until your PCa shows growth. And that's how you want to approach it. You don't want to start an ADT up front, because it will fail on the back end. Then additional drugs get involved, ultimately leading to chemo. You seem to have it right where you want it, imho.

    Joe

  • Benshelper, See the blog developed by Chuck Maack of Us Too for a great reference tool by a PCa survivor.

    theprostateadvocate.com/obs...

    Clint

  • Kudos on being a supportive wife and making the effort to educate yourself so that together you can make informed treatment choices. Prostate cancer is challenging because there are so many decisions to make. Good luck.

  • Hello Benshelper,

    I have heard the arguments on both sides for early ADT vs. later ADT. There are experts on both sides and I personally have no credentials that qualify me to weigh in. Having said that, I'll go ahead and give you a few ideas that occur to me on this subject.

    First, I'd like to say something about the Mayo Clinic scans. The purpose of those scans is to find out if the cancer has spread to one or just a few specific spots outside the prostate bed. If it has, there's a chance of finding them and attacking those spots with surgery or radiation. It's something of a long shot, but it sometimes works.

    Unfortunately, the scanning technology we have is not able to pick up very small tumors. That's why the Mayo people want to only test patients with a PSA above around 2.0. Those with lower levels of PSA probably have tumors too small to be found by scanning. Even if the PSA goes above 2, but Ben then goes on Lupron, the Lupron should shrink the tumors and, again, they could be too small to see on the scans. So, if the Mayo clinic approach sounds promising, then you'll want to hold out on the Lupron for a bit.

    Another approach to the "PSA failure" (i.e., rising PSA after treatment) is to radiate the area around the where the prostate was. I'm surprised that Ben's doctor didn't mention that. Radiation works best when the PSA is very low, the lower the better. Some say that the chances of success (already less than 50/50) get significantly worse if the (pre-Lupron) PSA goes above 2. Unlike the Mayo C-11 choline scan however, getting on Lupron now might actually make the chance of success with radiation slightly higher. Lupron will probably stop the spread of the cancer immediately, weaken it, and if it is still all within the radiation field (a big "if") make it more likely to all be killed by the radiation.

    The Mayo approach and the "salvage radiation" approach are intended to try to cure the cancer. The odds of their working are not high but, unless someone discovers that the cancer has spread to many places (which it may well have done) they're not zero.

    Then there's drug treatment. That almost always begins with Lupron or a similar drug (this is also called ADT or Androgen Deprivation Therapy.) This may still be controversial, but I personally am more persuaded by the argument for early ADT. The idea is to stop the cancer before it spreads and before it undergoes more mutation. Some say that this gives longer survival but not everyone is convinced. ADT does have side effects, one of which is a generally total loss of libido. Sex is possible, but it requires effort for a man to get it started.

    Recent studies ("chaarted" and "stampede" clinical trials) appear to have shown that ADT combined with chemotherapy provides significantly longer survival than ADT followed by chemo after the ADT stops working. That too is a consideration.

    So here's what I would do: Get the earliest appointment you can to meet with a medical oncologist specializing in prostate cancer. Write down a list of questions and ask them. Here are some that I suggest:

    1. Do you think that Ben's cancer is likely to be contained in the region of the prostate, or in a few areas? Is that common for men with Gleason 10 cancers or is it likely it's spreading everywhere?

    2. Is salvage radiation still an option for Ben or is it too late for that?

    3. Does the C-11 choline scan at the Mayo clinic, or similar scans elsewhere offer any reasonable hope of success in locating small, treatable, areas of cancer? Should we hold off ADT in order to try one of the scans?

    4. Does it make sense to begin ADT now, without waiting until August? What advantage would there be in waiting? If there isn't any, can we begin now?

    5. If you think that curative therapy (via the C-11 or similar scans, or via salvage radiation) is not likely to work, would you advocate a combination of ADT & chemo, as indicated by the "chaarted" and "stampede" trials?

    Unfortunately, the specialist may not be able to answer these questions. He may say that we just don't know - and he's not lying if he says that. But I would ask him for his best recommendations anyway.

    Best of luck.

    Alan

  • thanks Alan, I appreciate your reply. I was contacted today by Vanderbilt and they now agree to see Benny way sooner than they said before. I found out for one thing they had his PSA number wrong on his chart showing the rate of increase since last May and it was since December. That seemed to charge them up a bit. It always pays to double check charts and be sure they have everything correct. So now we are set up for scans and more in one month not 6. That makes me feel alot better. I am still keeping this list of questions, thank you!!

  • I am not a Doctor, but play one at home on myself. I would get on a triple blockade asap. The PSA of over 1, is 5 times more then when some Doctors start treatment[>0.2]. If your nadir hits zero/undetectable---reaching 0.2, is a warning sign. I would sign up for a Vantas{lupron type drug]--implant in the arm---done in 5 minutes without shots and good for a year, plus, adding the drugs, Casodex, and Avodart. The high Gleason usually means a return of advancing PSA's----you probably will get there eventually--as someone already said why wait---lets put those cells to sleep/dormant--and by doing so many will die during the process--by starvation/ and blocking their receptors.

    Nalakrats

  • One caveat on the one year Vantas implant.

    Sometimes a person has a bad reaction to an ADT drug. For example I appeared to be experiencing liver damage on Lupron. So a more conservative approach is to get a shorter term treatment first. Shorter term treatments give some additional flexibility to change to other drugs on a shorter time frame.

  • See your point---looking from my tower I know that a one month shot as a 3 month shot starts out with maximum drug infusion in the body loaded up on day one, and then it starts a half bell curve as Lupron[Leutinizing Agent], drops day by day until you need the next shot---so by the time you need the next shot your body has mostly depleted the first shot---which to me might be dangerous and allow dormant/sleeping Pca cells a reason to wake up.

    We call Vantas---Steady Eddie---the amount of drug released on day one is the same that is released on day 300---no ups and downs---and if you get a bad reaction--you do not have to wait a month--since you were injected/or get treatment---With Vantas--a Doc. takes it out in 3 minutes. Can be done at a Walk In Clinic if your Uro, or Onc. or GP was not immediately available. My Doc. has over 10 years of implanting Vantas in over 500 patients. We are buddy buddy---so I asked him how many patients have you killed with the implant--he said none--but he also said that some advanced into deep Metastatic Cancer eventually--and did die. He has gotten up to 6 years on Vantas, on patients with high Gleason's, expressing a very aggressive disease, along with Casodex, and Avodart--keeping their PSA under 0.1

    I know one of his patients personally that went 4 years--maintained undetectable---he had a nasty pathology/Genome Mutations---and he had it taken out and did active surveillance. He did this for 6 years, to date, and his PSA, with just his personal supplemental program---has been 0.3 for 6 years. They must have killed a bunch of those little bastards.

    Nalakrats

  • At your husband's stage, more or less, I took these steps (once my PSA doubling time went from 30 months (not a care in the world) to 4 months (deadly):

    1. Plugged my data into MSK's salvage radiation treatment (SRT) benefit nomogram. It spits out the odds of benefit.

    2. My odds were very low (and subsequent consultations ruled out SRT completely IN MY CASE), so I put my eggs in the c-11 choline PET/CT scan whac-a-mole basket at Mayo. Four scans over 18 months finally ruled out local treatment, leaving me only systemic treatment. My 4-month PSA DT was screaming, "HURRY!".

    3. I then beelined it to three consults at another big national cancer research center, a local medical oncologist, and a clinic in Los Angeles to which many big names in oncology such as Snuffy Meyers send their toughest cases: Leibowitz at Compassionate Oncology (every man with PC should study his website, IMO.) PC is all he does, his treatment protocols are literally decades ahead of some of the biggest institutions, and I've talked at length with some of his patients who are still athletes 17-18 years after the big cancer centers gave them one year to live.

    But before and during all that, I spent thousands of hours studying PC in books and PubMed. I remain convinced that this led me to making far superior PC decisions over my past 13 years than my 15-18 oncologists have collectively done.

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