Recurrence. Lymph node mass. At Johns Hopkins now for 2nd opinion. Help.please. UPDATE🤭😭😭😭😭😭😭

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GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/7/2018 1:15 PM (GMT -6)   
Ok. I posted all of this once and it disappeared. My error, I’m certain.
Here is my husband’s story.
Age 50..2003. Radical Prostatectomy. Gleason 4+3.Negative lymph nodes and margins.
2006.. PSA. 2.08.. Two needle biopsies Negative. Prostascint Imaging . No evidence of locally recurrent disease within the prostate bed or adjacent nodal beds. No evidence of distal metastatic prostate ca.
March 2006. Received Salvage Radiation Therapy to 6480 cGy in 36 fractions to prostate bed. Siteman Cancer Center Washington University St. Louis.
Psa’s Started to rise ..
2007..0.17;;2008-0.2;;2009-0.2::2010-0.2;;2011-0.8;;2013-1.2;;2014-1.9;;2015-2.2;;2016-3.5;; March,2017-6.1;;May, 2017-6.1;;Oct. 23, 2017..7.8.
Followed by Dr. Mi, who was not concerned about continual rise, stating doubling time was long. 12/5/2017 Bone Scan..negative
CT Abdomen and Pelvis...1.6cmx1.7 cm nodularity along right internal iliac lymph month delay in care, due to “ lost records.”
Michalski delayed treatment, stating radiation treatment records from 2006 had been lost.
Husband received Lupron 3 month shot on 12.15. 2017 and began 30 day regimen of Casodex.
Michalski proposed 28 sessions of external beam rad to lymph nodes and pelvic area. Stated it was with curative intent. Husband told him that he did not wish to go through more radiation, given all of his current problems. Michalski said , “ There won’t be any problems. The only problem we sometimes see..is..bowel obstructions. And we can take care of that.” ( I have been a RN now for 40 years. Ok. And my husband had a ruptured diverticulitae in 2000, requiring colon resection, temporary colostomy then reconnection.) Informed Dr. M. We are seeking 2nd opinion. Not met with our expected professionalism.

Husband was Seen March 6, 2018 at Johns Hopkins by. Dr. EA, MEdical Oncologist.
Stated likelihood of radiation being curative <10%. Stated “ No RO here would order that.”
Husband has 3 pad a day incontinence,frequency. Severe problems with adhesions and bowel issues from radiation. Severe erectile dysfunction, not amenable to any pharmaceutical interventions.
Antonarakis spoke at length about genetics. Husband’s father and uncle both had PC . Age 60’s but no recurrence after RP. Husband’s brother and 2 first cousins had PC in early 50’s. Both had RP. No recurrence.
Antonarakis ordered COLOR test and stated a tumor dna analysis would be attempted.
The slides from his 2003 RP were analyzed here at JH and he states reclassified as 3+4.
Antonarakis plan of care: Husband to receive Lupron 3 month dose on 4/17 at Siteman.
Michalski at Siteman declined our request for a MO.( Our insurance does not require it. As a professional courtesy, I asked him.) He did not offer my husband the opportunity to have advanced PET scan, despite our desire to pay for it. Michalski said no need for MO and plan was Lupron for 2 years.
Antonarakis said, “ that is ridiculous. We hate anti-androgens.” Went on to specify all potential complications. His plan is to stop Lupron in June and watch PSA. Do PSMA scan when levels rise.
PSA is 0.1 now.
Also stated, “ Johns Hopkins hates chemo.” He spoke with us for 95 minutes.
“My hope is that there will be a clinical trial for you next summer.”
Wants to see us in 6 weeks to review genetic test results. And meet with geneticist, if indicated.
Said majority of men at his advanced stage die within 5 years.
“Try to find an oncologist in St. Louis who will work with Johns Hopkins protocol.”
Frankly, I was stunned when we left. Has taken me 24 hours to assimilate this into my consciousness. I still can’t formulate it into words, to tell our children. We are hiding out here in our hotel in downtown Baltimore.
.
Advice please.

Post Edited (GaryGwifeRN) : 3/11/2018 6:36:36 PM (GMT-6)


halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3555
   Posted 3/7/2018 1:20 PM (GMT -6)   
Wow, that's quite a story. And, honestly, quite contrary to anything I've heard before out of Siteman.

I assume you live in the St. Louis area. Have you talked to anyone at either SLU or Mercy?
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Ak123
Regular Member


Date Joined Nov 2016
Total Posts : 281
   Posted 3/7/2018 3:53 PM (GMT -6)   
another member here and myself had RP and SRT and both failed for both of us. The otter member name is cashless have been trying diet & exercise to lower psa. He has been very successful in bringing it down from 5 to .4. For more than 2 years. I started myself doing the same things. Is it possible you can get your husband to try while investigating other avenues?
age 63 now, diagnosed on 10/2012 at 58 years old
RP 12/2012, Gleason 3+4, positive margins and extra capsual extention, PNI,. T2c.
Psa 12/12/2016 .07
SRT 1/3/2017 (39 sessions at MSK )
Psa 5/16/2017 .07
Psa 7/15/2017 .10
Psa 2/22/2018 .17

GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/7/2018 3:55 PM (GMT -6)   
I think he is now sufficiently terrified, that he will do anything.

Ak123
Regular Member


Date Joined Nov 2016
Total Posts : 281
   Posted 3/7/2018 4:01 PM (GMT -6)   
I totally understand and I don’t think you should believe the 5 years time they gave him. I am not a doctor but I have read on here that 20 years ago, it used to take 8 years for Mets and 5 to end but that was before all the new treatments they discovered. I heard chemo byitself can last for some patients more than 6 years. Ask Tall Allen on here, he is very informed about all of this and can give you better advice. From what I read from your post, he is not even CRPC patient yet. I am not really the person to go by his words but I read a lot on this site that said different things.
age 63 now, diagnosed on 10/2012 at 58 years old
RP 12/2012, Gleason 3+4, positive margins and extra capsual extention, PNI,. T2c.
Psa 12/12/2016 .07
SRT 1/3/2017 (39 sessions at MSK )
Psa 5/16/2017 .07
Psa 7/15/2017 .10
Psa 2/22/2018 .17

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 3212
   Posted 3/7/2018 5:11 PM (GMT -6)   
GaryGwifeRN said...
I think he is now sufficiently terrified, that he will do anything.


I'm sorry to hear Y'all have been put through the ringer like this. I am not expert enough in the situation you find yourself in to offer any advice, perhaps others here can. Although I concur with what AK123 mentioned, and things of that nature that might help and probably won't hurt. God bless and prayer sent up for Y'all!
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos with one G9(5+4), 1 PNI, T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, cut wide, but 1 tiny foci right at the edge of margin ) Pros. 106.7 gms!
At 15 months, not wearing a pad most days, mostly dry
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17,10/17

GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/7/2018 5:23 PM (GMT -6)   
Thank you. Doctor just called, saying that 2 Radiologists here at Johns Hopkins read the CD of his CT of abdomen and pelvis and they see a pelvic mass, suspicious of metastasis, that our home cancer center did not see. We have gone to a NCI teaching facility and you think that they don’t make mistakes. Well, as a 61 year old RN, I know how many, many mistakes are made every day, in hospitals. Wind gets knocked out of your sails, get back up and sail on. We been fighting this....for 15 years now so we aren’t giving up now. I know how very difficult it is to find a physician that is excellent.. we will just keep looking. I say, we...🤭😊, I, mean, me.

Tall Allen
Elite Member


Date Joined Jul 2012
Total Posts : 10645
   Posted 3/7/2018 9:52 PM (GMT -6)   
You've run into the problem that to a hammer everything looks like a nail. You've talked to two of the top people in their respective fields, and they each have biases.

I've got to say that Michalski is one of the top ROs anywhere, and has forgot more about radiation oncology than Dr A will ever know. JH is just not very good at radiation oncology, imho, whereas Siteman is one of the best. The question for Michalski would be, what are the chances that salvage LN radiation will be effective? A recent study by Touijer et al. (described below) suggests that 10-year mortality can be decreased by 54% by such treatment. This is hard to ignore.

/pcnrv.blogspot.com/2017/12/salvage-whole-pelvic-radiation-after.html

Dr A is an MO - and one of the best. He specializes in personalized medicine. There are a very few therapies (only 3, in fact, and one is only if there is a metastasis to biopsy) that we have to treat certain genetic abnormalities. Here's an article about the Color Test if you want to know more about it:

/pcnrv.blogspot.com/2018/02/inexpensive-screening-for-germline.html

For incurable PC, I think JH (and a short list of other institutions) is second to none.

So the decision is in your court - do you want to go for a cure, or are do you want to manage the disease? I would point out that you can do both - try the salvage LN treatment, and if that doesn't work, move on to a management strategy.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/7/2018 11:04 PM (GMT -6)   
Thank you Tall Allen and everyone. We will likely go home and talk with Michalski. Your advice is invaluable to us.

Post Edited (GaryGwifeRN) : 3/7/2018 9:52:18 PM (GMT-7)


John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 1245
   Posted 3/8/2018 8:59 AM (GMT -6)   
Why not try a completely different facility for a 'sanity' check. My entire PCa journey was managed by MD Anderson and I'm a happy camper. You can self refer and easily get an appointment.
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
12/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/9/2018 6:02 PM (GMT -6)   
First opinion was in St. Louis at Washington U.
Second opinion was at Johns Hopkins. Husband will not go for a 3rd opinion. And frankly, it’s time to make a decision.
Going in next week to talk further with our RO. Both physicians have strong opposing views. My husband has many side effects from original radiation, including 3 pad a day incontinene and diarrhea alternating with constipation.
2003. Husband..RP, Gleason 4+3
2006. External beam Rad 38 sessions
2014..PSA rising
2017..Oct. PSA.7.8. CT ABd. Right inguinal node Mets. Bone scan neg.
12/17..Lupron 3 month IM and Casodex 30 day dose.
3/17..PSA 0.1

GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/9/2018 11:26 PM (GMT -6)   
Tall Allan, if I am understanding this correctly, it is the patients with the higher Gleason, more lymph node, most disease that fared better.
My husband has a Gleason of 3+4, negative surgical margins , 1 lymph node involvement so I assume he does not fall in to that category.
I don’t quite understand...is this study done on people who had previous radiation therapy and RP? Maybe it’s just shear exhaustion, but I’m not seeing this, thank you.
2003. Husband..RP, Gleason 4+3
2006. External beam Rad 38 sessions
2014..PSA rise
2017..Oct. PSA.7.8. CT ABd. Right inguinal node Mets. Bone scan neg.
12/17..Lupron 3 month IM and Casodex for 30 days
3/18..PSA 0.1

GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/9/2018 11:40 PM (GMT -6)   
Tall Allen said...
You've run into the problem that to a hammer everything looks like a nail. You've talked to two of the top people in their respective fields, and they each have biases.

I've got to say that Michalski is one of the top ROs anywhere, and has forgot more about radiation oncology than Dr A will ever know. JH is just not very good at radiation oncology, imho, whereas Siteman is one of the best. The question for Michalski would be, what are the chances that salvage LN radiation will be effective? A recent study by Touijer et al. (described below) suggests that 10-year mortality can be decreased by 54% by such treatment. This is hard to ignore.

/pcnrv.blogspot.com/2017/12/salvage-whole-pelvic-radiation-after.html

Dr A is an MO - and one of the best. He specializes in personalized medicine. There are a very few therapies (only 3, in fact, and one is only if there is a metastasis to biopsy) that we have to treat certain genetic abnormalities. Here's an article about the Color Test if you want to know more about it:

/pcnrv.blogspot.com/2018/02/inexpensive-screening-for-germline.html

For incurable PC, I think JH (and a short list of other institutions) is second to none.k

Thinking these criteria do not apply to my husband. He has low volume disease, Gleason 7, 1 lymph node . And I don’t see where these patients had previous salvage radiation.

So the decision is in your court - do you want to go for a cure, or are do you want to manage the disease? I would point out that you can do both - try the salvage LN treatment, and if that doesn't work, move on to a management strategy.

GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/10/2018 12:00 AM (GMT -6)   
My husband’s PSA was 7.8, up from 0. 3 years prior. RO never worried, he said, because of doubling time over 1 year. Every man on here gets additional treatments when PSA rises fractions. Haven’t seen anyone yet in my husband’s situation. And darned if I can get any doctor to rationalize it, for us.
2003. Husband..RP, Gleason 4+3
2006. External beam Rad 38 sessions
2014..PSA rise
2017..Oct. PSA.7.8. CT ABd. Right inguinal node Mets. Bone scan neg.
12/17..Lupron 3 month IM and Casodex for 30 days
3/18..PSA 0.1

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1593
   Posted 3/10/2018 12:56 AM (GMT -6)   
GaryGwifeRN said...
My husband’s PSA was 7.8, up from 0. 3 years prior. RO never worried, he said, because of doubling time over 1 year. Every man on here gets additional treatments when PSA rises fractions. Haven’t seen anyone yet in my husband’s situation. And darned if I can get any doctor to rationalize it, for us.


I'm sorry you're having to go through this. Racking your brain...it's scary, surreal, isolating and exhausting...you're right in the middle of it. It's palpable in your posts. Living is not over for either of you. That's my belief.

Take care
David

Tall Allen
Elite Member


Date Joined Jul 2012
Total Posts : 10645
   Posted 3/10/2018 3:18 AM (GMT -6)   
GaryGWifeRN said...
Tall Allan, if I am understanding this correctly, it is the patients with the higher Gleason, more lymph node, most disease that fared better.
My husband has a Gleason of 3+4, negative surgical margins , 1 lymph node involvement so I assume he does not fall in to that category.
I don’t quite understand...is this study done on people who had previous radiation therapy and RP? Maybe it’s just shear exhaustion, but I’m not seeing this, thank you.


No, you are not understanding correctly. The study showed that the sickest men had the most to benefit from the additional salvage compared to ADT only, but on the whole, everyone who got the salvage had increased survival.

The study was done on men who had a previous RP and PLND who were found to have a positive LN. They then received whole pelvic SRT, which includes radiation to both the prostate bed (which your husband already had) and radiation to the pelvic LNs (which your husband has not yet had). Those who had both areas treated had 59% lower 10-year mortality compared to those who had ADT only. Those who had ADT only survived no longer than those who were only observed, although their prostate cancer-specific survival was better.

To summarize - men with positive nodes who got salvage radiation to the pelvic LNs lived much longer.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Octorobo
Regular Member


Date Joined May 2009
Total Posts : 406
   Posted 3/10/2018 4:48 AM (GMT -6)   
Wow, I can understand the exhaustion. Especially in the day to day battle. TA's case study seems to bring some hope. Renew your strength and take some action. Maybe live longer! Maybe a real long time.
Be of good encourage and press on.
This forum is amazing.
Diagnosis in August 2007
Age 57
PSA 4.1 Gleason 3+4=7
Robotic Surgery - 10/2007
GS 3+4=7, Stage T3a N0 MX, Margins-, EPE +, PIN+, Nodes-
Post- Surgery PSA .005, Jan. 2015 .06
SRT ended 5/15/15. 35 treatments 70 Gy's 8/1/'15 PSA <.006 11/1/2015 <.006 5/2016 <.006. 12/2016 <.006, 5/2017 <.006, 2/2018 <.006

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1593
   Posted 3/10/2018 8:20 AM (GMT -6)   
GaryGwifeRN said...
Thank you. He did not have a PLND. His surgery was in 2003. Two lymph nodes were examined. No disease. Sorry to belabor this, but we must make sure the benefits do outweigh the risks. He has been through so much and suffers daily with the effects from his first round of radiation. An easy decision for others, perhaps, but not for us.


There's more of this than meets the eye.

Post Edited (island time) : 3/10/2018 6:23:54 AM (GMT-7)


GaryGwifeRN
New Member


Date Joined Feb 2018
Total Posts : 11
   Posted 3/10/2018 10:09 AM (GMT -6)   
Thank you all for all of your excellent support. I have handed the baton over to my husband. Putting my own oxygen mask on first. I applaud each and every man who takes interest, responsibility and action for his own health. Some men don’t. I now see why some wives bail. Being who I am, I won’t but I will look after my own health first. This has been totally insane. Time to move on..thank you for helping me see and runderstand this. Perhaps a miracle will occur and you will see my husband post on here. I have encouraged him to do so, over and out."..........to the gym...
2003. Husband..RP, Gleason 4+3
2006. External beam Rad 38 sessions
2014..PSA rise
2017..Oct. PSA.7.8. CT ABd. Right inguinal node Mets. Bone scan neg.
12/17..Lupron 3 month IM and Casodex for 30 days
3/18..PSA 0.1

Post Edited (GaryGwifeRN) : 3/10/2018 8:13:09 AM (GMT-7)

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