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IADT3since2000 05-04-2021 07:51 AM

Re: positive lymph node removal during prostate removal
 
Hi again JD,

Here are a few thoughts prompted by your reply to Terry about your husband's history.

[QUOTE=JD2823;5510502]...
We are in Arkansas (50 miles from Little Rock, two hours from Memphis)
We are both teachers currently working. I can't wrap my head around treatments in another state, we just can't afford something like that. We do have insurance, but I have no idea what they will pay for and what they won't. I'm sure out of state/out of network??[/QUOTE]

One source that may be able to provide information on good local doctors or leads to local support groups is the Arkansas Prostate Cancer Coalition. You can find contact information for it by going to the site for the National Alliance of State Prostate Cancer Coalitions at https://naspcc.org/index.php/state-coalitions . My recollection from one annual NASPCC meeting I attended is that it was quite active. They may also be able to advise on insurance aspects. Your husband's case is challenging of course, and you may be able to negotiate a waiver to get out of state care, if that would be better than care available in-state. Nearby powerhouses for prostate cancer are MD Anderson in Houston and Vanderbilt University, with MD Anderson being especially prominent.

Here is something you can do on your own to explore state/local resources: go to www.pubmed.gov and search for something like - prostate cancer AND Arkansas . I just did that and got a list of 51 papers. You can then click on the blue hypertext to get the abstracts that most papers have, and then click on the + sign for author affiliations and look for Arkansas institutions. That will facilitate contacts and acquiring leads. To focus the search more, try something like - prostate cancer AND Gleason AND Arkansas . When I did that I narrowed the list to just nine articles. The first author listed is typically the quarterback or director for the study, and the last author is typically the senior member of the team, sort of like the producer, so such authors with an Arkansas base would likely be more helpful.

[QUOTE=JD2823;5510502]We chose surgery because that is what the urologist said he would do if it were him and he was the only doctor involved with his care.[/QUOTE]

That's typical, kind of like the Ford salesman telling you that a Ford would best serve you, but that's the reality the vast majority of us prostate cancer patients face. Urologists, for better and for worse, are the gate keepers for prostate cancer. They aren't out to deceive us; most honestly believe they are the best doctors to take care of us, and often their product, surgery, is a reasonable option.

[QUOTE=JD2823;5510502]His overall health... he has type II diabetes and has had a very hard time controlling his sugar the past two years. He has complained a lot of fatigue and tired legs for the past year. [/QUOTE]

This is really important. Is your husband taking metformin for his diabetes? There has been exciting research suggesting that metformin, the old mainstay, dirt cheap drug for diabetes, is quite active in helping to counter prostate cancer, not just clinical evidence but also research showing why metformin is likely helpful, the "mechanisms" of actions. Research has also shown that other diabetes medications do not have this favorable effect. Moreover, research indicates that metformin counters some of the side effects, especially "metabolic syndrome", including controlling blood sugar, faced by men on ADT (androgen deprivation therapy) for prostate cancer. Here are links to two of many papers that are particularly encouraging: https://pubmed.ncbi.nlm.nih.gov/21933330/ , and https://pubmed.ncbi.nlm.nih.gov/23287698/ . The latter link has a further link to free access to the complete paper with its highly encouraging graphs. You can view other research by going to PubMed and searching for - prostate cancer AND metformin ; I just did that and got a list of 345 papers, virtually all published after 2007, which indicates this is a very active, hot area for research. At least one clinical trial is now underway (an arm of the STAMPEDE trial in the UK) to test whether metformin does really work against prostate cancer the way we think it works. Now retired eminent prostate cancer expert Dr. Charles "Snuffy" Myers, MD, did a wonderful presentation focused on metformin at the 2016 Conference on Prostate Cancer in the annual series held in Los Angeles. An inexpensive DVD set that contains that talk is available at https://secure.pcri.org/np/clients/pcri/giftstore.jsp#welcome .

[QUOTE=JD2823;5510502]Other than that he is in good health. I think this answered best that I could with information that I have so far. We are still waiting on post op pathology.[/QUOTE]

Be sure to get copies of all test results and reports. Even if you don't understand all they contain, other doctors you see will appreciate having them.

Good luck!

Ö.Jim

[SIZE="1"]- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.[/SIZE]

Terry G 05-04-2021 12:23 PM

Re: positive lymph node removal during prostate removal
 
JD, The additional information is already proving very helpful. Early detection is key to a quick resolution to most any cancer and especially prostate cancer. It frustrates me to find men that are not detected earlier.

Reading through the comments I see youíre getting excellent information and advice. Even though my diagnosis was far simpler than your husbandís I found out with the advice of forumís like this one that the best treatment is often at a center of excellence. Although it was a little effort on our part getting out of network to seek treatment it was very much worth it. I believe the very best can make a difference and MD Anderson is among the very best. We treated our travel like an adventure or mini vacation seeking out new restaurants etc. Also, all of our followup has been by virtual visit and very convenient. After 50 years with our original insurance we changed to a company that offers Cleveland Clinic in network just in case we had a new challenge face us. Iím glad youíre getting such good advice here and wishing your husband and yourself the very best.

JD2823 06-14-2021 10:59 AM

Re: positive lymph node removal during prostate removal
 
Just want to tell you thank you again for helping us understand so much of the unknown. I read the book you suggested and it is excellent. We now have had an appt. with radiology oncologist. I understand now that the waiting is to get the accurate psa 6 weeks post op and that will tell if there is any cancer left in his body? I think if it is above three then insurance will pay for more advanced scans. He goes Thursday for six week post op. I guess they will do the psa test and start hormone therapy then. I was reading about all the different kinds. is one better than another? The surgeon wants him to wait twelve weeks to start radiation. He is still dealing with incontinence so I understand why we are waiting now. Hoping for complete recovery for sure! I know it is such a pain to pee when I sneeze, so I certainly sympathize with someone dealing with it all the time.

JD2823 06-14-2021 11:13 AM

Re: positive lymph node removal during prostate removal
 
Jim, sorry I haven't been on here in awhile so just now seeing this. He has been on metformin for several years. Hopefully it has been helping... encouraging news to hear. I think I also read that in the book. I will research these links and see what I can find. Thanks again for the info.

john4803 01-07-2022 04:26 PM

Re: positive lymph node removal during prostate removal
 
I had 3 lymph nodes infected and so my RO went high on my radiation. I was put on ADT (Lupron) immediately after surgery for 2-1/2 years and my Stage 9 cancer did not metastasize until almost 4 years.

During my Prostate surgery, the cancer was trying to get into my bladder, so I had quite a repair, resulting in my catheter being in for 3 weeks. It fully recovered in a couple of months.


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