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Progression without significant rise in PSA

Trp911
Posts: 8
Joined: Jun 2017

My husband was diagnosed five years ago at age 53. He hadn't been to a doctor in 20 years and worked out everyday and appeared healthy. PSA was 12.8, prostate was left intact after they discovered lymph node invasion. 9 nodes, including local and distant were positive. He had 52 rounds of radiation and hormone therapy for 3.5 years and responded very well, undetectable PSA. He battles significant fatigue and has symptoms that are worrisome for spinal mets. The pain does improve after a while, but it is frequently debilitating. He claims the pain is muscle spasms, but he also lives in denial about all of this. His PSA was undetectable (uncommon with prostate still there), after radiation and recently has slowly risen to .23. Research says unlikely to be in the spine without a rise, yet he has been high risk of it since day one. Gleason was 4 + 3.  Has anyone experienced metastasis to spine without significant rise in PSA? 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I have read other men who had bone mets but with a relatively low PSA... nothing as low as your husband's 0.23, but more like a PSA of 5. So I suppose it could happen. Have you or your husband requested a bone scan? I realize this may be difficult without demonstrating significant PSA, but if you detail the symptoms to your Dr he may be able to give some guidance. He did originally have a hystoloc grade 4 which could have thrown off micromets. Having chosen RT rather than RP there is no lab pathology to indicate whether or not there was extraprostetic extension. The distant LNI should have been reason enough to keep him under periodic observation for the past five years.

Trp911
Posts: 8
Joined: Jun 2017

He has been checked every three months and opted to cease hormone therapy almost 2 years ago. When surgery was performed, they were able to identify extra prostatic extension, yet opted not to remove.  several nodes also has extracapsular extension. I think the doctor would agree to do a scan of my husband was honest and didn't under report symptoms. :(  just trying to make sense of it all.....

FinishingGrace
Posts: 83
Joined: Apr 2017

My neighbor does this. Tells me all about every problem he has (which are real) but when we get to the doctors office and the doctor walks in the room? He smiles and tells him how great everything is. I'm a Christian and I swear I have come close to violence right there in the room it makes me so mad.

Hoping your husband can get the scan and wishing you all the best.

Trp911
Posts: 8
Joined: Jun 2017

Haha, frustrating isnt it?! Thank you.

VascodaGama's picture
VascodaGama
Posts: 3050
Joined: Nov 2010

Trp911,

I cannot understand your two posts above. Can you specify if your husband had surgery after radiotherapy?

When and how did they find those positive lymph nodes with cancer?

What about any image study, has he had a CT or MRI at diagnosis?

I understand your worries about your husband's symptoms but nobody can tell you that such is related to cancer without proper diagnosis. The hormonal treatment is linked to several side effects including loss of muscle mass, fatigue and changes in mood similar to the symptoms experienced in menauposethat could be related to his present symptoms.

The PSA is a simple marker that together with the image studies can guess the existence and location of PCa. I wonder if any bone scan has been done along his 5 years of survivorship. You may request his doctor to get a PET scan that is more specific to prostatic cells, and then proceed accordingly. That will give you both peace of mind.

Best,

VG

Trp911
Posts: 8
Joined: Jun 2017

Thanks for your comments.  I guess some of my info was confusing.  He was diagnosed about 5 1/2 years ago. When they went in to remove the prostate, they discovered infected lymph nodes. At that time, most specialists believed removing the prostate was not worth it, bucause if it was present in nodes, it was micro mets everywhere and therefore incurable, and they chose not to put the patient through the prostatectomy. He had a very skilled surgeon (one who taught many other surgeons the DaVinci method, he also consulted with the top three facilities in the country for guidance) I realize some of those recommendations have changed since - depending on the specialists.   He had radiation at that time, and hormone therapy. the radiation caused virtually no side effects. The HT went on for 3.5 years and he stopped almost two years ago.  He did definetely experience all the side effects from the HT.  He had bone scans at the time and everything came back clear. He has had psa checks every three months since. He still experiences extreme fatigue, and for the last year has had significant pain in his back and neck.  He denies that it could be anything other than muscle spasms.  I know that until hes honest about symptoms, we wont know for sure.  I realize no one can diagnose him from here....I was just wondering what your opinions are and if anyone else experienced bone mets without rise in PSA after this time frame. I understand that these cancer cells can change and sometimes in aggressive cancers, dont cause a rise - but the information is muddy in this area for me.

hunter22
Posts: 7
Joined: May 2017

My prostate cancer metastesized to my left hip with a PSA of 0.04 in March 2017. My doc did not suspect anything but wanted to do a bone scan and a CAT scan. The bone scan showed something and a bone biopsy revealed prostate cancer. My last PSA was a 0.16. I have just completed three Provenge treatments and have an appointment at MD Anderson next week. I have no pain anywhere and walk and exercise daily. I had my prostate removed in March 2016 and 1 out of 6 lymph nodes removed showed cancer. I have been on Lupron ever since but have had no radiation treatments. My Gleason score was an 8.  

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I'm curious, if you had no pains and your PSA was only .04, what prompted your doc to order both a bone scan and a CT scan one year after your RP?

Old Salt
Posts: 720
Joined: Aug 2014

It appears likely that cancer cells had metastasized not just to one (or more) of your lymph nodes but also elsewhere, PRIOR TO the surgery. That may be the reason that radiation was not prescribed but hormone therapy was.

hunter22
Posts: 7
Joined: May 2017

Bone scan and CAT scan prior to surgery were clean. 

 

Old Salt
Posts: 720
Joined: Aug 2014

Scans would only pick up major metastases.

VascodaGama's picture
VascodaGama
Posts: 3050
Joined: Nov 2010

Trp911,

Along our journeys as survivors in sequential treatments, many get confused when told that their cancer got a different Gleason rate more aggressive, many years after the initial diagnosis. This surely is a surprise to the many as it does not fit the way our cells duplicate and evolve. In fact there is a controversy among researchers regarding an increase in aggressiveness of prostatic cells while these advance in life.

There have been some studies on the issue but nobody could get a reasonable answer. However, as I posted to you in the other thread, the Gleason patterns used traditionally in the diagnosis to judge aggressiveness can now be complemented with a genetic test which is more accurate for judging aggressiveness. This test can provide specifics independently of the Gleason grade. In other words, there are Gleason rates (1,2,3,4,5) lesser aggressive than others. Here is our discussion;
https://csn.cancer.org/comment/1585668#comment-1585668

I believe that cancerous cells can get higher Gleason rates if their DNA is damaged while in their life cycle of duplication. This could be due to a treatment we endured or an outside cause such as pollution (orange gas, etc). In a clean environment (including no forced DNA damage) one should expect cells to duplicate equally becoming a clone of the previous. That is to say, with the same Gleason pattern.

Those that were diagnosed initially with a certain rate in biopsy and later found with a different rate, may have missed the second rate from the beginning. There are also those cases when the tertiary rate is not reported by pathologists for its very low numbers. Another aspect in this intrigue is the fact tha one may have an aggressive type of PCa evolving some where without knowing it for being asymptomatic and producing low PSA serum. The best is to get a gene test along with a biopsy and a sophisticated image exam that is specific to prostatic cells.

Here is an interesting article about "Aggressiveness of Prostate Tumors May Not Change as Cancer Evolves", on the opinions from epidemiologists;

http://www.cancernetwork.com/prostate-cancer/aggressiveness-prostate-tumors-may-not-change-cancer-evolves#sthash.40TdPmX4.dpuf

Here are news on some genes that denotes aggressive bandits;

http://www.bbc.com/news/health-22065289

I hope this post helps in understanding your above inquire "... bone mets without rise in PSA after a time frame".

Best wishes,

VGama

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