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Any advice would be appreciated. PSA rising 6 weeks after RP

DonnaS67
Posts: 10
Joined: Sep 2016

Good morning,

 

My husband had a RP on Juy 27th.  Pre surgery he was diagnosed with 5+4 = 9 Gleason score and his PSA was 7.9. We had the first post srugery PSA done and the results were 24.  Thinking this was a misread, we had it re-tested 2 wekks later and the number is now at 28.  All of the pre-surgery prostascint, bone scans and x-rays were negative for any uptake and the surgeon said that it was contained except for a little area on the right side but he felt confident that he had gone wide enough to get it all and all of the margins came back normal. Doctor said 2 weeks after surgery that we would not have to Radiation or hormone therapy and then when we returned to have blood drawn for the first PSA post surgery, he did a 180  (without even having the PSA results yet) to say he really thinks we should have the radiation and hormone therapy because of my husbands age (58) and the aggressive nature of his cancer.  We have switched to an Oncologist (Radiation) instead of the Urologist and now we have no idea what to think and the information you can find is almost none. I don't know how to get throught this, we are now starting at square one and they are ordering all of the same tests we had prior to the surgery to see if they can detect cancer elsewhere. 

 

Devastated

 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Donna,

I am sorry for the situation. You need to recover the strengths and continue the good fight against the bandit. Be positive.

You did not specify which tests have been done before surgery or the ones now being requested by the new oncologist but I guess they were the traditional bone scan and CT/MRI. These tests are typical in providing false negatives because they cannot detect cancer of small sizes. The initial negative results may have been the reason for choosing surgery as prime. Most probably the newer tests will also fail if they are the same, so that you should insist in getting image studies via PET scans with the newer contrast agents.
Please read my post to another survivour in here; https://csn.cancer.org/comment/1553746#comment-1553746

Without defined targets, the radiologist may direct the radiation to common areas of salvage treatments that includes the prostate bed and localized lymph nodes. Unfortunately this sort of blind administration is done on guessing and it may fail again. I would recommend you to get copies of previous tests and exams for comparison by the radiologist, but I would be looking for the possibility in having PET exams.

Gleason 9 is of aggressive type of cancerous cells. They spread fast and need prompt attention. In any case, your husband needs to recover from the surgery and be fit for the RT. Usually doctors recommend 4 months of rest before any administration, though this period can be extended further without prejudice of the outcome. Do not rush but be attentive and do things coordinately.

Just curious about the type of surgery. Was it open RP or robotic?

Best wishes and luck.

VGama 

DonnaS67
Posts: 10
Joined: Sep 2016

Thank you for your response. The RP was robotic and the tests prior were the routine prostascint, ct scan, bone scan an chest X-ray. I have read a little about the PET scan. What can I do if his Doctor is resistant to this type of test?  Any help is appreciated as we are getting conflicting stories from different doctors.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Donna, 

Prostate cancer is extremely hard to locate outside the gland. Your husband's surgeon guessed wrong about the containment, and what was obviously a positive margin. 

Ensure that his radiation oncologist is well experienced with prostate cancer specifically.  As Vasco noted, enhanced PET scanning could be of great value. PETS are not massively expensive, and his situation medically warrants one.

Disease that has escaped the capsule is in most cases still treatable toward curative effect via radiation only. His case is not hopless; radiation, done right with good imaging to guide it, may eliminate all of the disease.    Radiation is the obvious next step. But your husband's particulars demand real expertise; doctors who have worked on PCa a lot.

Hormonal Therapy (HT) can extend life many years, but is not curative. The same for chemo.   

Best of luck with this stressful development,

max

 

 

DonnaS67
Posts: 10
Joined: Sep 2016

Thank you for the response, I appreciate it and I will keep updating as I find out more information.

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I am sorry for what you and your husband are going through.

A Gleason 9 is an aggressive cancer, and in most cases the cancer has spread outside the capsule, and surgery for cure is not an appropriate treatment. As VG mentioned, in addition,  there were inadequate tests done when your husband was diagnosed. VG gave excellent advise about seeking out more effective diagnostic tests.

I suggest that you and your husband seek out a medical oncologist, the very best that you can find, to lead your medical team. A combination of hormone treatment and radiation may be appropriate. Radiation does a better job when done in conjunction with hormone treatment.......it is also possible that depending on the extent and where the cancer is now outside the prostate, that hormone treatment only  may be more appropriate.

Keep on posting here and ask questions...as lay people we will do our best to answer and give support. We are here for you.

Research, Internet, read books. Attend local support group(s). There is an organization USTOO.com that sponsors local support groups world wide...go to their site and determine a support group,  near where you live.

At any rate the proper diagnostic tests are appropriate at the this time 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Donna,

I sense anxiety in your words. The situation may seem pretty bad to you at the moment because you dealing with the unknown, you are not educated in PCa (prostate cancer) affairs, your husband is young and the doctors you are meeting just pass you conflicting stories. It is confusing but try keeping your posture. Listen to them, collect as much information as possible, read a lot about similar cases and digest the data before acting. You do not have to follow blindly the doctor’s recommendations, in particular if he is resistant to your wishes or you have no full understanding of his recommendations.

Thought I do not know details of your husband’s status or the advancement of the disease, I would reinforce above Max’s opinion that the case may “still be treatable toward curative effect”. Finding its location is vital in your next step. Doctors use the word “Localized” when referring to cancer in the proximity of the prostate gland (further than contained). This is the traditional area for the attack with all weapons when surgery fails. If the cancer has spread to far places (not localized) then the case is treatable but the curative purposes become ambiguous, depending on the areas where cancer is set. I guess that this is what doctors are telling you in their style of wording but you cannot understand it all.

The insurance or health care system you have may “prohibit” certain exams or therapies if these are not considered standard. The doctor can tell you about the coverage but even uncovered exams can be done privately or through other means with a referral letter from a physician.

I wonder if someone is insisting to repeat the exams with the solo commercial purposes. I would like to know the details of previous exams. Can you describe what is written in their reports?
Get copies of all tests and exams because you can still get a second opinion on those results from a specialist radiologist. He then would tell if repeating the tests is in fact necessary.

In particular the ProstaScint should be able of localizing PCa if they used recent tracers in a MRI 3T machine. Can you tell which substance was used? And in which machine (MRI, CT, PET, Gamma-Ray, etc) were the test done?

Back to the initial phase of ProstaScint (in 2001), the tracer they used at the time were very unreliable, commonly providing false negatives and/or false positives. Later they improved the monoclonal antibody Indium based (7E11C5.3 antibody) which at higher resolution machines become more reliable but still providing only 68 % in accuracy in SPET or CT machines. This test was approved by the FDA (2005?) and it is administered in several clinics since. Never the less, other tracers with Choline base (C11, F18, etc) emerged and become more popular than the ProstaScint for easy of administration (apart from providing higher levels of accuracy due to PET). PSMA based tracers (like the ProstaScint or Ga 68) are more reliable but they should take the benefits of a higher resolution machine for specificity.

In the end the goal is to locate the bandit so that one can choose the best plan for eradicating it. Radiation is usually done only one time to the same area. Rads over rads is not practical so that the field of attack should be defined from the best information we can get.

The modality with added HT (hormonal) commented by Hopeful above, may still improve the therapy outcome if the cancerous cells are AR+++ and PSMA+ (genomics of your husband’s cells) which information you may find in the pathologist’s report from surgery. Do you have a copy?

I am sorry if my comments still add more confusion to the situation. I will try explaining the facts while you gather the details on the matter. Just ask and the survivors here will help.

Best wishes and peace of mind.

VGama

 

DonnaS67
Posts: 10
Joined: Sep 2016

I will gather all the test results and report here.  Thank you for all of the information.

 

Old Salt
Posts: 720
Joined: Aug 2014

The pathology report from the surgery (the gland is examined in detail)  is usually very informative.

DonnaS67
Posts: 10
Joined: Sep 2016

We still do not have a copy of that report and we are 8 weeks post surgery.  I have requested it.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Donna, if it is a lot of documents, scanning them and then a cut-and-paste or other technique to get them here would be easiest. But I recocmmend redacting (blacking out) any personal ID information, since this is a public site (name, SS number, date of birth, address, patient ID) -- I recommend that all of that be removed first, for security and confidentiality reasons.

Will Doran
Posts: 207
Joined: Sep 2015

Donna,

I'm very sorry to hear of your husband's situation.  And sorry that your have this fight added to your lives. 

I was diagnosed in 2013 with a PSA of 69, and Gleason 7. I had no symptoms.   Had Robotic surgery Dec 2013.  My PSA dropped to <0.010 in about two months post surgery.  From the start, my Urologist / Surgeon sent me to Radiation and Chemo Oncologists before we did the surgery.  I was to decide which route I wanted to go.  I decided on surgery but was told that they were going to be very aggressive with my treatment.  Post surgery Pathology showed I was  Stage pT3bN1.  One lymph node involved (very tiny spot), no bone involvement, And surrounding tissue was OK.  Even though that was my results, I had 8 weeks of radiation, after being started on Lupron (hormone therapy).  Since I was listed as an aggresive stage 3, my doctors decided to treat me as an advanced stage 4.  I was on the Lupron for 2 full years.  I've been off the Lupron for 9 months at this point and my testosterone has come up from it's lowest of 17, while on Lupron (normal is 250 - 1,100) to 320 and my PSA is still considered Undetectable.  However the PSA has come up to 0.035.  We are watching the PSA and then going to decided whether I need to go back on Lupron. 

I did much study and research before deciding what to do.  Make sure you understand all that is ahead of you and make sure and think about quality of life.  This is a very hard fight.  It's very scary, but the fight has been worth it for me.  I would assume that your husband will have to have "clean up Radiation and Hormone therapy. That started, for me, two monts post surgery.  I'm not a doctor and thus I'm only guessing, from what I've been through.  He's much younger than I was when diagnosed.  I was 67 when diagnosed and just turned 70 last month.  I was told, at the time, that I was a good candidate for surgery becasue of my "Youth" and physical condition, at which I laughed.  I was told that by the Radiation and Chemo Oncologists.  Post surgery they have all said we made the right decision, because of the recovery I've made to this point.    So, as to what I've been through you have done what would have been recommended by my doctors.  It's the follow up treatments that should make the difference. 

Again, I'm not a doctor but this is my take on your situation, according to what I've been through.  Ask as many question as you can both at the doctors and here on this site.  We will all try, as much as we can, to help. 

It's a hard fight, but tell your husband to "Fight like 'H' and stay strong."

Know that your husband and you are in my thoughts and prayers.

Peace and God Bless

Will

DonnaS67
Posts: 10
Joined: Sep 2016

Thank you.

bob33462
Posts: 78
Joined: Feb 2016

Donna -

I had Da vinci in April 2016 and my post operative PSA was 2.6.

Before I started any Salvage Radiation or HT therapy I opted to have a 68 Gallium PSMA PET/CT at UCSF. This is the most sensitive scan for Prostate Cancer. Unfortunatly it is not yet FDA approved so either get into a clinical trial for it or travel to Germany or Austrailia where they can do them. More trials are coming out for this PSMA Scan.

The reason I wanted the scan before Salvage Radiation was to see if it has matistized to the bones or any soft tissue areas. If it had, Radiation would be fruitless. I didn't want to start HT before the scan because it may have prevented the scan from picking up cancerous areas.

Best wishes to you and your husband.

Bob

 

 

 

 

 

DonnaS67
Posts: 10
Joined: Sep 2016

Okay, since the PSA test came back high the doctor ordered a new bone scan and CT pelvis scan.  Doc syas the scan showed a spot on his back that could be nothing but he is ordering a cervical MRI just to be sure.  I am concerned because I received a DVD of the scan and I do see the spot the doctor is seeing only I also noticed that the whole prostate area is lit up like a christmas tree on the scan as well, only he did not say anything about that.  I am no doctor but I compared it with his presurgery scan and they look no different.  We are sending his medical records and images off to the Cleveland clinic to have a urologist give a second opinion.  I have also contacted the Mayo clinic to get him on the waiting list for a C-11 Choline PET scan that may help us better dtermine where the cancer is.

 I am concerned that they have not come up with a treatment plan as of yet.

Here is what I found on the first biopsy report (still waiting on the post surgery report - now 8 weeks)

Adenocarcinoma Gleason 5+4=9 (Grade group 5)

Left Base - Gleason 4+4=8 2 cores involved

Left mid - benign

Left apex - suspicious for carcinoma

Right Base - Gleason 5+4=9 (80% pattern 5) 30% of tissue 2 cores involved

Right Mid -  Gleason 5+4=9 (70% pattern 5) involving 10% of tissue

Right Apex - Gleason 5+4=9 (60% pattern 5) involving 5 % of tissue

Thank you for all of the support, we keep on looking.

 

Will Doran
Posts: 207
Joined: Sep 2015

Donna,

My pre surgery MRI showed my prostate as bright red.  The lymph node that had a spot, didn't show up in my pre surgery MRIs.  It was too small for the MRI to pick it up.   Post surgery, after a year, you can see the "blank--open" area where the Prostate was.  My Doctor has showed us all that and pointed out all those things to us. 

My Gleason scores were 6 & 7, and the first numbers were all 3's.  Post Surgery showed 40% involvment of the prostate. 

You are making the right decisions to get second & third opinions.  Keep at it.  Don't back off.

Love, Peace and God Bless

Will

DonnaS67
Posts: 10
Joined: Sep 2016

Well, after the elevated PSA  post surgery at 6 weeks of 24 and a re-test two weeks later at 28.5 we had another bone scan and pelvis CT. Bone scan came back with a suspicious spot in the T6 vertebrae so the Radiation oncologist ordered a thoracic MRI. Results cam back yesterday with evidence of cancer in the bone. We have an appointment scheduled with a medical oncologist on October 18th to talk about a start date for Hormone therapy and possibly chemo in conjunction.  Has anyone else had it in their spine? What can we expect.  Will the hormone therapy kill it?  Can it still spread to other areas?  Plese help me.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Donna

I am sorry for the situation. This positive result of cancer in bone (T6) is not good news. This finding is tottaly contrary to the surgeon comment in your first post that; "...The pre-surgery prostascint, bone scans and x-rays were negative for any uptake and the surgeon said that it was contained ...."

This was bad diagnosis turning into bad choice of therapy. I hope the oncologist you are seeing is prostate cancer specialist. The last info you shared indicates your husband's case as very aggressive and advanced, T4 with metastases in bone. This may not be curative but it can be treated and controled for years. Hormonal and chemo are palliative. The radiation we have been so hopeful does not now assure cure too. Radiologists may reserve it to attack those spots causing pain.
Surely it is possible to radiate the common areas covered in salvage treatments but these do not include bone, in particular those places where RT is not practical.

Xofigo is the new treatment for bone metastases but it is know to cause nasty side effects. You can read details in here;

https://www.cancer.gov/types/prostate/research/radium-223-improves-survival

http://www.cancercenter.com/cancer-drugs/Radium-223/

There is another similar therapy using radioactive particles named Lu 177 (Lutetium) this is new and still under clinical trials but it is reported not causing critical side effects. You can discuss with the new doctor about these treatments. Make some copies. Please read details in here;

http://www.imperialendo.com/for-doctors/lutetium-therapy/lutetium-therapy-patient-information-sheet

Best wishes,

VG

DonnaS67
Posts: 10
Joined: Sep 2016

I agree that we got a bad diagnosis and that likely the RP was unecessary.  I will ask the oncologist about the medicines above and we are also going to try to change to a plant based diet for a while to see if that will help with his blood pressure and cholesterol at least while we arei n this high stress situation..

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Please read above

Old Salt
Posts: 720
Joined: Aug 2014

I have read that cancerous sites in bone sometimes can be killed with spot irradiation (like SBRT). Has that possibility been discussed?

Just a thought...

DonnaS67
Posts: 10
Joined: Sep 2016

Yes, we asked about that, however, they said they would not use the spot radiation unless my husband was in a lot of pain from it or it was compressing the spunal chord.

 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

I agree with Old Salt. You may discuss the matter with a SBRT radiologist and try to locate the spots with one of those "sate-of-art" image exams. Spot radiation kills cancerous cells, but this is applied when the spots are located at feasible and appropriate places, where the required intensity (grays) can be deposited. T6 is at the thoracic, close to several vital organs, difficult to treat with external radiation. The isodose should be planned looking into the best angles of delivery.

My comments in previous post generalizes the whole situation based on the location of the metastases. Salvage therapies with ER commonly include the lower abdomen with spots at lumbar bones. Here the attack is wider (tissue and bone) providing higher possibilities of success. Oligometastases treatment are also successful at this areas but for a fewer number of spots that could be isolated at far places.
Radiologists abstain from treating with intent at cure when assurances of success are low, reserving radiation for other purposes as when treating unbearable pain (due to metastases in bone). The cancer is controlled with palliative manipulations that can last many years. 

Here is a simplified image of T6 location;

http://www.chiroone.net/interactive-spine

Best,

VG

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