Newby with GS 10 but PSA 3.16

Not a lot of new advice to add, you've gotten some great advice from the fine folks here and are doing a wonderful job of educating yourself. Your low PSA, G10 disease is in a class of its own and extremely high risk and needs careful determination of treatment.The treatment decisions are difficult and everyone's situation is different as far as their prostate cancer, their expectations, and life circumstances - I think yours even more so. As you can see in my signature below, my husband was, on biopsy, a G7/8. His decision was to opt for surgery and he went in fully aware of the potential side effects of that course of treatment. Overall, he just wanted first, to know exactly what he was dealing with (didn't want the mind games of not knowing), and secondly to know that he would have the whole arsenal of treatments available to him over time. In all of the research conducted and published that I have read, there is no true, clear laser cut advantage of any treatment over another that is generalizable to the larger population. I am used to reading medical research studies and sadly, they frequently lean toward the specialty of the team conducting the research and can give a bit of a slanted view. Rad oncs lean toward radiation and surgeons toward surgery. Not to mention, with the near similar outcomes for all, one of the true decision factors among the various modalities to be considered (besides the likelihood of killing the cancer) is the side effects that ultimately show up from the respective treatment chosen - basically, do you want side effects sooner or later? As a disease that can tend to become a more chronic issue once you pass that magic Gleason 6, ongoing treatment becomes a reality for many. My husband did exceptionally well with surgery and recovery, nearly fully continent within a week of the cath being removed. A year out, near zero drips except with the occasional sudden cough or sneeze. He ended up being upgraded to the 4+5 with a positive node, EPE, and +SVI and is now on ADT, and just finished his radiation therapy in May. PSA was pretty fixed at 0.06 following surgery, but dropped to non-detectable levels shortly after beginning ADT and continues so at this point. As far as QOL issues - his libido is suffering from the ADT, but both of us feel a bump in the sex life is a better option than the other outcomes. His attitude in regards to the ADT is to endure the course. The radiation therapy was a different bird, not bad in the initial phases, but evolved into extreme fatigue and the usual bowel concerns toward the end. Amazingly, in his focus on enduring, he managed to work 40+ hours a week through all of it. Ongoing opportunity to wander this mortal plane together is our choice for as long as we can with some decent health, and we have accepted this new "normal", as LadyJane referred to in her wise post. Overall, prostate cancer is a b***h, but we've chosen to be aggressive in our approach to it and to go on living life. We could be depressed (living in the past), make our selves crazy with anxiety (living in the future/unknown), or simply choose the present. I'm rambling here and not really adding much except to wish you the best in your decision - you've done the research to help you decide what will fit you and your circumstances with an especially high-risk level of disease.I wish you the best as you navigate this path.

I've been trying to find out what facilities in my area offer HDR brachytherapy and it's taking a lot of time. Has anyone already compiled such a list?

I did find a Varian site that lists the places that have their equipment but there are other manufacturers of the equipment (Elekta for example).

I'm also finding that HDR BT is offered for some cancers but not others at the facilities indentified as using a particular manufacturer's equipment. For example, I see the Hopkins has Elekta BT equipment and that they offer HDR BT for breast cancer but I don't find clear indication that they offer it for PC.

Also, am I correct that seeds (permanently implanted radiosources) are only implanted for LDR BT, that for HDR BTseeds are NOT used, that the source is temporarily placed at various locations in the prostate through a number of fine catheters for a short time, removed when the session is done?

Holding our breath for results of MRI tomorrow, hoping it shows tumor is not beyond the prostate.

Thanks again for all the input and encouragement.

Grandpa, yes, you're correct about HDBT--the rad sources are put in, then removed a few days (I think) later. They are not permanent, where with LDBT they are permanent.

Since you are in the Northeast Corridor, someone within a reasonable distance of where you are must offer HDBT for PC.

Thanks halbert. Added them to my list. Hope to get HDR BT closer to home if possible but want to go somewhere where they have considerable (and recent) experience. Hoping Hopkins does HDR BT.

I know some triple play guys that travelled for their brachy, but had the IMRT part of the treatment done locally. But clearly that depends on your local IMRT options.

So you're on ADT, but not Lupron? What have you started on? If you've already been on some sort of ADT they would still make you wait until start Lupron? Have you had a PSA and testosterone test since starting ADT? (Sorry for all the questions!)

Grandpa Marv - Sounds like your visit went well and you are narrowing the choices down. You are doing a great job in a short time period which your adverse PCa requires.

You may want to consider staying at JH or G’town if you are unable to gain confidence in the local RO people and equipment. The noted places all have some ability to deal with all the out of town patients they get for extended treatment. In fact, you could go to some top notch place with better weather and not worry about winter driving

During HDR brachy you have a catheter inserted--I'm not sure if they do that for LDR brachy, but I presume so. FYI, whether it was a result of my brachy or IMRT (or both), I don't pee as well nowadays. But it's only a minor annoyance and I take about one Rapaflo a week for it and I'm fine.

Yes, radiation to the prostate may affect urinary flow (long) after undergoing the treatment. I don't know whether HDR brachy is better or worse for your situation than say, SBRT. Of course, there are drugs that may help with urinary flow (see Michael's post above). I was prescribed one, but ended up not taking it because I didn't have serious problems and was a bit concerned about potential cardiac issues.

I do agree that travel to Georgetown can be a nightmare. I was allowed to schedule my treatments mid-day, and had no issues.

Unfortunately, I cannot comment on the IMRT instrument used by your local (Charlotte Hall) radiologist, but most will agree that what matters most is experience, not the equipment.

PS: I just read the post by schoolpsych; it's quite encouraging. I think you should discuss that strategy with the Johns Hopkins staff
https://www.healingwell.com/community/default.aspx?f=35&m=4145188

Post Edited (Sr Sailor) : 8/17/2019 12:17:28 PM (GMT-6)

Sailor: Thanks for the reply and link to schoolpsych. Just finished sending him a reply with thanks.

Mumbo: I have bunch of questions for local rad onco and will include questions regarding age, upgrades of his equipment and his level of experience treating PC.

Also want to thank the person who suggested contacting Dr. Sartor at Tulane. I was able to contact him and he has been very helpful.

Thanks again.

Mumbo: Thanks for SBRT suggestion and link. e.noont thread has a lot of good info, need follow it and digest. SpaceOAR discussion also got my attention and need to look into it, generate questions for local rad onc regarding what he can do to protect adjacent OAR like bladder and intestine.

Hadn't considered camping out near a facility that offers optimal treatment Already told the kids we were done camping for the year, not ready to share the bad news with them yet. Sudden change of camping plans at this point would need well conceived explanation. Daughter expecting twins in November, kidney transplant recipient and high risk so don't want to distract her at this point when there's nothing she can do. No one in family has been told yet for this reason. Same for friends, neighbors. Don't want leaks or spilled beans.

Grandpamarv,

I hesitate to throw more at you that you may not need but I see that you have contacted Dr. Sartor so possibly expanding your geographical search for more information for treatment options and information on adding chemo or Zytiga. My cancer had already spread to a lymph node at diagnosis so I was a different from your case, but I ended up either doing telephone or in-person meetings with doctors around the country. Many will do a telephone appointment. If you choose to pursue this route, you might also want to check out Prostate Oncology Specialists in Los Angeles. I had my surgery and radiation done here in Cleveland at the Cleveland Clinic, but ended up flying back and forth to Los Angeles every three weeks for my chemo. My Clinic doctors were not onboard with POS's recommendation that I do chemo and Zytiga as part of the upfront/initial treatment. Through my discussions with my doctor at POS, it made sense to me so I did it through them. Certainly, your case is different from mine, but you will find that there are different thoughts among different doctors.

As far as the grass, I have a big yard and use a push mower (well, okay, self-propelled) and I never had a problem working full time and mowing the yard during radiation (I'm in my early 50's). Chemo, on the other hand, did knock me on my rear. So, my wife, who had never mowed a lawn in her life, learned a new skill. I had a great time sitting in a lawn chair in the driveway watching and giving her a (good-hearted) hard time (seriously, how hard is it to overlap a bit and not miss a row of grass?) ha ha. Anyway, my point is, take care of yourself, you might, or might not, need to make some alterations as far as yard work once and awhile, but those things will all work out. You'll always be able to catch up on tasks when you've recovered.

We really appreciate all the info, suggestions, sharing of experience.

Got prostate MRI report today, seminal vesicles normal, no enlarged lymph nodes, no osseous lesions in pelvis.

lesion volume .97 cc lesion dimensions 1.3 x 0.7 x 1.1 cm. location: right posterior lateral peripheral zone of the mid gland, with extracapsular extension and neurovascular bundle involvement.

Don't know what urologist will think about surgery at this point, see him when he gets back from vacation in 10 days. See local rad oncologist in a couple days.

One remark Hopkins rad onc made was to consider DNA testing and wonder how much others have done this, what value it adds. No family history of PC as far as we know. Hopkins mentioned Invitae as option for DNA testing.

GPM - I had genetic counseling and testing done in June, mainly for my sons and brother but also to see if there was a gene deficiency that might contribute to my PCa treatment. Also had Decipher genomic testing on the prostate tumor after surgery. The genetic counseling pretty much starts with a family cancer tree where you establish who died from what and when (much harder to determine than you would think, what did Uncle Bob actually die of?) and then discuss with counselor to see if genetic testing is appropriate. They then take a blood sample and send to Invitae lab in CA and you get a report on 21 markers possibly associated with prostate cancer such as BRCA1, BRCA2, etc.

My results were negative for the 21 markers so not very helpful. The counseling was interesting but probably not necessary. There are a lot of disclaimers about the science rapidly advancing and the test results are only as good as what is known today, not necessarily tomorrow. I think we are all looking for a cause of our PCa and the genetic testing gave me some hope that there was some gene responsible for my malady. Did not help me as it turned out so I blame a guy named Gene now.