I was just giving the news about by prostate cancer and I'm looking to learn from everyone here, my stats:
63 years old
PSA 27
Gleason: 8 (4+4)
having CT scan tomorrow and Bone scan Friday
If anyone has some ideas on the following:
1.) finding a good prostate cancer Dr. near me in So. Ca. 92543.
2.) Loma Linda Cancer Center and I'm looking into Proton treatment and if that applys to my cancer status.
Happy I found this website!
Steevo,
With a PSA of 27 and Gleason 8, your cancer is serious and aggressive. It's important for everyone with cancer to get the best doctors and especially so for someone with an aggressive cancer.
Here are some suggestions:
1. One place to look for doctors is at one of the U.S. National Cancer Institute "Designated Cancer Centers". These centers are believed by the NCI people responsible for compiling the list, to be leading edge research, teaching, and treatment institutions. Here is a link to their list:
cancer.gov/research/nci-rol...
2. It is my personal, inexpert, and possibly worthless opinion that proton beam therapy and x-ray therapy are equally effective and the evidence for proton beam having fewer side effects is significant in theory but slender in practice. However, having said that, I would also say that, as far as this non-expert can tell, proton beam therapy is not worse than other radiation therapies and Loma Linda is a top institution from which to get it. They've been doing proton beam prostate treatment for more years than any other institution.
It used to be, and may still be, that for a high-risk case like yours, proton beam radiation oncologists would combine proton beam with x-rays. Protons would be aimed at the prostate itself. X-rays would be aimed at the areas around the prostate to which the cancer may already be spreading. Ask the Loma Linda people about that.
I think it is VERY important to have an excellent radiation oncologist planning and directing the treatment. If the treatment fails, it may not be possible to repeat it because the cumulative damage from two heavy doses of radiation to the same area may do more harm than good.
Here are some questions I would ask about radiation treatment:
1. Should I have neo-adjuvant (i.e., before and during) androgen deprivation (i.e., hormone therapy to block testosterone availability) treatment?
I think the answer is Yes if you have settled on some form of radiation rather than surgery. I also think you want to start it NOW! It can take up to a couple of months to schedule radiation. In the meantime, you want to stop and reverse the growth of the cancer. ADT will also shrink and weaken the tumors, making them more susceptible to radiation damage.
2. What additional scanning should be done?
The bone scan will show if there are bone metastases large enough to show up on the scan, but won't show anything about tumors local to the soft tissue of the prostate and surrounding lymph nodes. The CT scan might give information about that, but one of the newer MRI, or especially PET scans, might be more specific. I would ask about them.
3. What will the rad oncs radiate?
Obviously, they will radiate the prostate. Will they radiate the region around the prostate? What about the lymph nodes? Are there extensions of the prostate tumors that have penetrated the capsule wall? How will the rad onc find out what should be radiated and make a plan?
4. Is it essential to do any needed additional scanning now, before starting ADT? Will the ADT will shrink the tumors and make them harder to spot? How quickly can any new scans be done in order to start the ADT soon?
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You have entered a strange and scary new world where none of us ever wanted to be. However, there's a decent chance you can escape from it or render it unable to harm you.
I wish you the best of luck.
Alan
I think like Alan your are in good hands with Loma Linda. I am also considering Proton treatment. Regarding a good surgeon in SC. Mitt Romney was treated over the summer for prostate cancer by Dr. Thomas Ahlering at UC Irvine Hospital in California. You can bet Romney with his money and resources found the best surgeon. Good Luck!
I’m about 6 weeks post diagnosis and have spent nearly all of that time researching and exploring my options which are considered much easier than yours. I am 65,PSA 5.95 and Gleason scorer 3 + 4=7. I have many options with these numbers, yours may be more limited or even more urgent. One takeaway I’ve learned is to make sure you physically get to one or two cancer research centers like Mayo, Johns Hopkins, etc. There you likely will find excellent doctors who will be cautious and thorough. Like the rest of us you’ll have each specialist tell you their specialty is what you need. It will get contradictory and confusing. Keep a large notebook with sections for doctors, tests, talks with guys who’ve been thru this, etc.
At the first cancer center ask them to request slidesfrom your urologist and read in their operation to confirm first readings. There’s a small chance a little difference could alter someone’s treatment plan for you.
I’m still undecided on my exact plan but likely will include proton therapy. You have at least 2 options for facilities in SC in Loma Linda and San Diego. And of course Mayo Clinic in Phoenix isn’t far away.
Good luck with everything and keep us all posted.
After reading the previous comments, let me just add this......., First make it clear that my experience dealing with PCA at age 52, which was 25 years ago I opted for open surgery as opposed to external radiation followed by radiation a year later, followed by hormonal treatment in the form of an orchiectomy another year later which was successful in stopping the cancer. (now 77) I understand there have been many advancements in radiation therapy since that time, but after receiving 2nd and 3rd opinions from other doctors, I picked surgical removal over radiation for the reason(s) given back then. Both 2nd/3rd opinions said that surgery was the more "sure" way of eliminating the cancer because once the radiation is done, there was no base in which to perform needed surgery if that became necessary in the future because of its possible return. Just something to ask about, as times and methods and options have changed and improved. Good luck.
The comment from the moderator is good, but why have you already decided on radiation therapy? Have you not considered radical prostatectomy (robot-assisted laparoscopic preferably)? I think that you should seriously consider it. I had a less-aggressive cancer than you (PSA 10+ with increased velocity, Gleason 3+4=7, and stage I after biopsy), and chose surgery as the best way to get rid of the gland itself in toto. I would recommend you see (if you have not already) a clinical oncologist who specializes in prostate cancer. You should choose a urologic surgeon with lots of experience in surgery should you choose that result. In my case, after getting the dx from my urologic surgeon, I got "second opinions" from both the clinical oncologist and a radiation oncologist. The clinical oncologist recommended, with my age (67 at the time) and life expectancy of 10-15 years at least, surgery. Have done with the source of the cancer. I trusted the clinical oncologist, because he had no preconceived recommendation based on specialty really. I saw the radiation oncologist who told me that I would need whole-beam radiation, not brachytherapy--my prostate was too enlarged. I was leaning toward surgery anyway, but this and the clinical oncologist cinched it.
The after-effects of both radiation and surgery are similar, though they occur in different ways. Both have a 50/50 chance of ED. With surgery it is immediate (usually--even in "nerve-sparing" surgery), but improves over 1-2 years. With radiation, typically it gradually increases over the year after the end of treatment. Both can result in incontinence (mine diminished to almost zero within 2-3 months). Radiation has other side effects, too. One other inconvenience to surgery is that you have to have your Foley catheter in place for 1-2 weeks postop to let the urethra heal. I figured 10-14 days nothing in comparison to peace of mind from surgery.
The advantage of surgery is that, of course it gets rid of the prostate, but also it allows the surgeon to get microscopic view of the area around the prostate, including the lymph nodes, and can tell if there is spread to that area. Also, of course, is the fact that the prostate is then dissected, with pathologists determining actual size and spread of the tumor, including spread to margins. My stage went from I post-biopsy to II post-op.
In any case, really study your situation. My urologist gave me the excellent book, "100 Questions And Answers About Prostate Cancer" by Pamela Ellsworth, MD. It is great and covers everything from diagnosis to treatment options, and treatment of spreading disease. I recommend it.
Best wishes! It appears that your doctor caught it early enough for a good outcome.
Thank you everyone, you folks are great, I appreciate you taking the time to help me. I have an appointment also at City of Hope Cancer Center they will advise on surgery option with Dr. Clayton Lau. Of course I dont yet know if the cancer has spread, I'll have a CT scan today, Bone Scan on Friday and trying to also get a PET or MRI as Alan suggested.
Best
Your account is similar to mine. I'm 63, Gleason 9, with clean CT and Bone scans so am diagnosed non-metastatic. If you scans are clear, you might consider this trial that I'm 6 weeks into. Here is the public link: clinicaltrials.gov/ct2/show...
HI uust wondering nowhere does anybody say do they say they went to a hematologist onocloigest that knows more about the cancer than a urologist ,had i first saw a hematologist onocloigest first a year ago i would already have my cancer fixed i put my trust in a urologist i wasted a year.back then my psa was 9 now its 25 cause i wasted a year look up a hematologist onocloigest
Coming to terms with prostate cancer not easy
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Non-invasive diagnostic for prostate margin determination
