Newly diagnosed

mrspjd said:

mr and mrs life explorer
My husband's PCa is similar. If he had elected surgery as his primary tx, he would have had open, not robotic (RRP). We agree that, even with a skilled and experienced RRP surgeon at the controls, for the guys with intermediate risk PCa that need wide cutting margin clearance and possibly more nodes disected/removed, the arms of the DiVinci cannot attain the necessary angle width as well as can be attained by the hands of a skilled and experienced open surgeon. Mr pjd elected not to have surgery and instead chose ADT3, High Dose Rate Brachy--temporary(HDR-B), and IMRT--sort of a triple primary adjuvant therapy approach. While a regular MRI may not show much re locally advanced PCa, an endorectal MRI w/Spec using the newer Tesla 3 MRI is considered the gold standard for determining if Extra Capsular/Prostatic Extension (ECE) is present. With a 3+4=7 Gleason & PNI (perineural invasion)identified in his biopsy report and confirmed in the 2nd opinion biopsy report lab results reading from Johns Hopkins, the endorectal MRI was an important test for mr pjd and confirmed that the PCa was in the rt seminal vesicle, with no evidence in the nodes. This info was important to us because it helped pjd make his treatment decision. His PSA was 2.4 @ diagnosis in Feb this year, and nodule was found on DRE that determined biopsy was necessary (9/12 cores positive).

Was wondering what specific ADT drug or drug combination Mr Life Explorer is on and how long he intends to stay on the drugs based on your docs recommendation. At 6 months in, mr pjd has tolerated the ADT well, with only minor side effects. How is Mr Life Explorer doing on the ADT? You wrote that your surgeon is "currently" in L.A. We live in So Cal & wondering if, by chance, your uro surgeon might now be at UCLA? Thanks.
Best,
mrs pjd

mrspjd said:

INTERMEDIATE RISK LOCALLY ADVANCED T3 PCa
Larry,

Yes, I've heard the same reasoning about why RRP (robotic) is a "better" choice than open RP that you've commented on. After consults with both experienced and skilled RRP and open RP docs earlier this year, we heard both cases being made about why one approach may be better than the other. This goes to the frustration for us "lay-men and women" in trying to sort out conflicting info when making important critical decisions for PCa treatments. As all here have come to know, ultimately we have to decide what is "personally right" and what makes sense to us--a highly personal choice to fit lifestyle and philosophy.

In our case, a nationally known and respected open RP uro surgeon made this case during our consult about why RP, FOR INTERMEDIATE RISK PCa, MIGHT be a better choice when attempting to remove all the cancer through surgery--re angle and width of margin clearance (as written about in the previous post). He also said that that the actual tactile feel and touch of the organs during an open RP procedure can (to an experienced surgeon) be important in determining the scope of the PCa, what to remove and where and how much to cut--i.e., margins and number of lymph nodes for dissection. This md also told us that while a post RP pathology report may provide add'l PCa info, that is NOT the reason to have a RP (or RRP)--the reason, the goal, for surgery is plain and simple--to remove ALL THE CANCER and obtain clear/negative margins. All this made sense to us. In another separate consult with an RRP surgeon, we asked about potential lymph node dissection during the operation. This info was important to us because of pjd's T3 locally advanced PCa staging (at the time we did not yet have the info indicating no node involvement/metastasis). The RRP doc shocked us with his answer--he didn't remove any nodes--period! When we pressed him for more info, his unprofessional response was "well, if you want nodes removed, I can take out one or two!" Couldn't get out of his office quick enough! If we had seriously considered RRP, I'm sure we would have consulted with another RRP doc. This is OUR experience and I realize many of you (Larry included) have had wonderful consults with RRP docs who you have used for successful outcomes.

Since pjd did not elect to have surgery of any kind, the subject/discussion was dropped. If there are studies out there comparing both surgical procedures, as with a lot of study data, I'm guessing one will find a study to support which ever choice/case that they are partial to.

Larry, you have had, and continue to have, my respect from your thoughtful, insightful, and caring posts and from sharing your personal experience. Thanks.

mrs pjd

mrspjd said:

Appreciate your support
Larry, Thanks for your support. It is appreciated. While I don't consider myself a "religious" person, I've had more conversations with the man (woman?) upstairs this year than in any other year of my life. A special family friend, an extraordinary, self actualized, woman in great physical and mental condition, recently was involved in an horrific auto accident in which the jaws of life were required to pry her out of the wreck, then she was airlifted to the nearest hospital. After 5 surgeries in less than 4 wks to repair severe internal injuries and two broken legs, during the hospital bedside vigil, her family, through the CaringBridge website, asked for prayers as their belief in the power of prayer is strong. Over 13,000 invited friends, family, & community members, visited that personal CaringBridge site. Sadly, she passed away from injuries and complications sustained from the accident. Her family's heart touching thought was that their prayers were answered, but not in the way they had hoped and that there were bigger plans for her elsewhere.

This brings home the feeling, more than ever, that Life is precious and short. So make sure the special people in your life know they are special and loved. Tell them. Often. This PCa journey will be with us all for a long time, in one way or another. Live your life. Today. Every Day. I do not mean for this post to be morbid or burdensome, but rather uplifting. I hope it is interpreted this way.

mrspjd said:

lymph nodes
In OUR experience, and as usual with obtaining info about PCa treatment, we received many different medical opinions about treating nodes and number & scope of nodes to treat, whether by dissection or radiation. Seven nodes (pelvic only?), whether by RP or RRP, are a lot to remove, unless, of course, they were all cancerous (just my lay opinion)--hopefully they were not. Indeed, Bronx, you had a very skilled RRP surgeon.

We were told of add'l potential complications and side effects from dissection of too many or all nodes (like chronic edema), especially if those nodes were not cancerous. Sometimes, prior to primary treatment, nodes are biopsied via laproscopic procedure, if node involvement/metastasis is suspected, since negative bone scan & pelvic CT do not detect microscopic cancer cells. Also, endorectal MRI using Tesla 3 technology, appears to be the gold standard for diagnosing ECE (Extra Capsular Extension) such as in the nodes and/or seminal vesicles.

I am not an expert, just spitting out what I think I learned in our PCa journey. This discussion is another reason to, first, do as much research as possible, then ask as many questions as possible during medical consults prior to making a treatment decision that you determine gives the best chance for successful treatment of your particular stage of PCa.

Life Explorer said:

mrspjd
Sorry for the delay in getting back to you. We were out of town and away from computer access.

My husband has been on every 3 month Lupron shots since March 22nd, and he is tolerating it really well now. He had horrible hot flashes at the beginning (every 20 minutes), but they've decreased in both intensity and frequency. (Although the doctors offered, he never went on any drug therapy for the hot flashes.) He is also bothered by dry mouth and fatigue during exercise. So far that's it. He did have a baseline bone density test before starting the lupron so they could watch for any early signs of osteoporosis, and since his cholesterol level was borderline, he was started on a statin (for the increased cardiovascular risk associated with lupron). Although the beneficial effects of aspirin in PCa is preliminary, we asked if he could start a baby aspirin a day and his urologist and internist agreed.

As far as how long he will remain on ADT if his PSA remains undetectable: that seems to be the million dollar question. When he started Lupron, they told him that he'd be on it for 2 years, but now there seems to be some new data that indicates that patients who stay on it for 3 years do better than those who stop after 2 years. We've asked 3 urologists and they've all had different opinions. We decided that we'd just keep watching the literature, and then as his 2 year anniversary gets closer, we'd have the discussion with his physicians again. What are the doctors telling your husband?

Thank you for the information on the MRI. It makes sense. When we asked about the MRI, it was after my husband's surgery. My husband's PSA pre-surgery was 5.3 with the biopsy showing only 2 out of 12 cores positive (Gleason 3+4). All the docs were shocked that he had a positive lymph node and that his PSA did not go down to undetectable after surgery and lymph node dissection. This has been a very tough year.

I hope your husband has continued success with the ADT therapy. I know that this is a very stressful time for both of you.
Best,
Life Explorer

Life Explorer said:

mrspjd
Mrspjd,
I agree that our husbands' cases have many similarities. It sounds like he is adjusting well; and if he's like my husband, he has not let this stop him from doing anything he wants.

How are you doing? Like you, I have had many conversations with the guy upstairs, complete with full-flood tears. We have been married for over 29 years, and he is the best part of my world. I can't imagine life without him. But, no matter how challenging this year has been, it has also been a real growth experience. I have met people (and read about some on this site) with much worse prognoses who live their life with amazing grace, dignity and good humor. They are my inspiration, and I am trying hard to emulate their positive attitude as much as possible. My husband and I are closer than ever, and we have a renewed appreciation of just how lucky we are and have been.

I, too, hope you will stay in touch. And I hope that other wives out there will join in our discussion. Although we are not the ones who are going through this challenging journey, we are the ones who love them and would do anything to make this go away.

Have a wonderful thanksgiving.
Life Explorer

mrspjd said:

Many Similarities
Life Explorer,

From one wife to another, I appreciate your reply. We appear to have much in common. My husband, PJD, started ADT3 in May, just a few months after your husband. He is on the 3 month (22.5mg) Lupron injection, and takes Casodex (generic) and Avodart in addition. Like Mr Life Explorer, PJD’s ADT side effects have so far been minor, with occasional mild hot flashes. PJD also had a baseline bone density test, (the QCT) for the same reasons you stated. He has no history of heart disease or heart issues, but also saw a cardiologist to get a baseline stress EKG and related info prior to start of ADT. While maintaining a heart & prostate-healthy diet and exercise plan, his cholesterol #’s were still borderline high. He recently agreed with his cardiologist & oncologist to start a statin for potential PCa and heart-health benefits. He continues to take a few supplements and also takes one 81mg aspirin most days. He exercises & works out several days a week with a personal trainer for obvious reasons, but also to proactively combat any potential ADT side effects, such as bone loss. While I notice (he doesn’t notice) that he seems more tired or fatigued, he hasn't slowed down & has maintained his work routine, and usually gets in one or two rounds of golf a week. More than likely the recent fatigue is from the IMRT which was completed end of October (or a combination of both the RT & ADT) and hopefully will resolve soon.

Ah, yes, the million $ question: How long to stay on ADT, especially for the men presenting with locally advanced intermediate risk T3 PCa & no test evidence of distant metastasis, such as to the bones or organs. And so many different research studies, both here and in Europe, to sort through with different or conflicting study results (6 mos, 1 year, 2 years, 3 years, intermittent??). Like you, we have read & received several different medical opinions on this subject and are assessing it month by month. The one year “Lupron” anniversary will mark a critical decision point. Fortunately, PSA, testosterone and DHT levels continue to significantly decrease and respond well to the ADT, both pre and post RT tx. Like your husband, it will be a year or so (after ADT cessation) before his “true/real/nadir” numbers stabilize & are known. PJD does not have a problem with this concept because, after careful evaluation, he decided the benefits out-weigh the risks and believes his chances of successful treatment are significantly increased by the ADT and RT combination for his stage of PCa.

Thank you for your good wishes. I wish the same for you and your husband. Hope you stay in touch.

mrs pjd