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halesgirl
Posts: 4
Joined: Mar 2021

Good Afternoon All!

I am new to this forum but it appears that i will need alot of information from everyone. My husband has not "officially" been diagnosed yet, but with a PSA of 47 and growths felt on both sides of the prostate gland during the DRE the doctor is pretty certain.  What really frustrates and scares me is that his PSA level went from 4 to 15 in January. At that time his doc sent him to one of the largest Urology Centers in Maryland - where he was told he likely had an infection and given 4 weeks of antibiotics to take. No DRE done, no exam of any kind. He went back for more blood work on 2/15 - no visit with the urologist. Results were in on 2/18 (according to the report) but NO ONE contacted him to say his PSA was now 47!!! Finally on 3/18 he called the office for the results, they told him it was 47 and that was it. He immediately called his PCP who called for the report herslef and advised he be seen immediately.

At this point we were so disgusted with the lack of concern from Chesapeake Urology I started researching top docs in Maryland and of course, came to Johns Hopkins. God bless them!!  He was seen for the inital visit the very next day, more bloodwork done (I'm terriried to see what it is now another month later), MRI scheduled for Saturday and biopsy April 2.  I think we are in the best hands possible other than God, but I am still sick with fear. 

I would welcome any advice, words of wisdom or just your thoughts on where we're at so far.  Thanks for hearing me out. 

Worried Loving Wife

 

GeorgeG
Posts: 152
Joined: May 2017

I traveled from Florida to have my surgery at JH, you are indeed in good hands. 

A likely cause for such a fast rising PSA can in fact be an infection or benign enlargement but as you know that is not the only possibility. That said, Prostate cancer is on the average slow growing except in rare cases. On the whole it is also very treatable and with proper intervention and quality medical care it does not take a large percentage of men, in fact its one of the lower fatality rates. Early detection and modern surgeries and radiation capability has increased the outcomes for the better. Every man is different, it is not a one size fits all and every family has a different perspective on what right for them. Some want to be aggressive and punch hard, others want to wait and see. Some dont care about side effects, some care a lot.

Get educated, ask questions and make well considered choices. Thats all we can do. Your at a top notch facility so you have taken the most important step. What happened before does not matter, its now part of history. Every day we make the best call possible with our latest information. Its very hard but try to relax. This may still not be cancer. If it is cancer, for most men its not life threatening. If in the small chance that it is life threatening, most live years, some live decades, Is there a possibility of a super agressive, fast moving cancer? Yes but its not very likely and some guys beat even those odds. Try to stay calm and walk through the steps to get a complete diagnosis then you can check back here as your options are presented and you have choices to make. Enjoy your days together, you still have the gift every day. This never goes away but it does get easier, the shock wears off. 

Cancer sucks but its very common and so its a part of life for many. We dust ourselves off and deal with it. I look at it this way - totally healthy people are wasting that gift everywhere in large numbers. In this club we can decide to have more good net days by giving and receiving love and offering the best support we can, no matter what our outlook is, something that nobody can predict, including people with no cancer diagnosis today. All the best and thank you for supporting your husband. I know your going through it with him.

 

George

halesgirl
Posts: 4
Joined: Mar 2021

Thank you for such an inspiring reply!! You've eased my mind and my heart tremendously. We've been together for 33 years and we will handle this together.  And I do plan to cherish every day since tomorrow is not promised to any of us.   Hope all is well with your health. I'm sure I'll post again once we have more definitive information. Have a great evening.

 Regards,

 Carol

GeorgeG
Posts: 152
Joined: May 2017

Carol

 

Thats a wonderful attitude. There are many knowledgable and compassionate people here that are willing to help if the need arises.

 

George

 

VascodaGama's picture
VascodaGama
Posts: 3356
Joined: Nov 2010

Carol,

I agree with George above. You should expect topnotch care from JH on your husband's prostate issue. I advise you to give them copies of the tests done at the other institution and write down (or tape) the conversation with the physician attending you. You will need to educate yourself on the matter as doctors do not substitute the patient in making a final decision . They will explain and recommend the best at their view. Second opinions are always a good step forward before deciding on an option.

Best wishes,

VG  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3647
Joined: May 2012

Carol,

Your husbands test history indicated serious and aggressive disease.  His biopsy will better detemine this and stage his situation.   Johns Hopkins is among the world's best, and virtually all PCa cases are well-managable.   The reactions of his doctors is dispicable and disguisting.  I would make that clear to them personally.    COVID has distrupted cancer care dramatically in the US.  C.T.C.A. had a TV advertisment on a few weeks ago, that said that tens of thousands have not had timely diagnoses due to the stupidity involving COVID.

It is time for you and him to get pushy,

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3647
Joined: May 2012

(( Carol, I intend this post in response to your Mar 26 note regarding his new PSA result.  I placed it here by mistake ))

 

In PSA testing and evaluation, something called alternatively either a 'vector' or 'doubling rate' is usually regarded as pretty dependable in evaluating aggressiveness.   You will hear his doctors mention this now.   His is stunning.  From what you say, they are now operating in urgency mode, with is advisable.    The most definitive result, of course, will be the biopsy -- more important than any scan, but the scans are necessary and valuable.  

Recall what everyone here has said: virtually any case is highly managable.

Georges Calvez
Posts: 526
Joined: Sep 2018

Hi there,

I would say wait and see what the results are from the biopsy, MRI, the inevitable bone scan, CT scan, etc.
PSA results are not a reliable predictor of the nature of prostate cancer.
Yes, the PSA level does correlate with more serious disease, but there are a significant proportion of men with low PSA and stage 4 disease.
I was one of the odd lucky ones, I started with a PSA level around three times the level of your husband's, and I am walking round in remission three and a half years later.
So, say it again, wait and see.

Best wishes,

Georges

Clevelandguy
Posts: 688
Joined: Jun 2015

 Carol,

From what I have heard JH is top notch.  Wait and see what the test results give you then plot a course of treatment.  Sound like your going down the right track.  Check back in when you get some results.  Lots of experienced guys here to give you their stories and help out with advice.

Dave 3+4

halesgirl
Posts: 4
Joined: Mar 2021

Thank you all so much for weighing in. You've already helped tremendously and we've just gotten started. We just got the results today of his most recent PSA test and it has now risen to 89. In one month moving from 47 to 89 is scaring the bejesus out of me! I haven't read a lot about numbers rising that quickly but it feels pretty ominous to me. Hopefully the results of his MRI tomorrow will yield some better results. 

GeorgeG
Posts: 152
Joined: May 2017

The DRE is imperfect. The PSA if you still have a prostate is imperfect. Detailed enough imaging to assess and confirm disease has been notoriously difficult with the prostate. They have newer MRI technology that can produce more information that will help make the process more reliable but will not produce a diagnosis. What it will do is add more clues and help guide where to get the biopsy samples from to increase the probability of getting a complete picture. Even then sometimes the final assesment is not given until after surgery, should that be necessary or appropriate. 

The MRI is most likely the first in a two part process being used to guide the biopsy needles. Then the samples have to be analyzed and a report produced. Together, all of this will produce a pretty clear picture of what you are facing. The waiting game is no fun, hang in there. You will have answers soon. Then you will seek opinions, be given options and you will have to decide on your gameplan.

 

George

 

Georges Calvez
Posts: 526
Joined: Sep 2018

Hi there,
I suggest that at your next consultation you request a Tcm bone scintigraphy if the doctor does not suggest it, which he may considering the speed at which the PSA level is rising.
https://en.wikipedia.org/wiki/Bone_scintigraphy

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 292
Joined: Feb 2018

Personally, I think your feelings are normal.  You are doing the right things.  Research; care facility; decision on treatment plan.  Right now, to me, you are in the learning and investigative phase. After all the results are in you folks will have to make a decision on how you want to proceed.  In my experience with the beast, I never let the beast get in the way of my quality of life.  I did everything the doctors told me to do, but I did not stop living and nor did my wife.  I am still me and she is still her.  I have been on my journey for 3 years.  There have been trials and tribulations. I am still in remission (PSA undetectable).  I am continent (no pads, no thins, no diapers).  My wife and I are still intimate.  This is a great forum with many cases.  So with that said, I wish you folks the best on your journey.

halesgirl
Posts: 4
Joined: Mar 2021

Thanks everyone for your valuable feedback.  The bio[sy is scheduled for this Friday 4/2 and I assume it will tell us exactly which type of cancer it is. It clearly is no  longer needed for an accurate placement of the biopsy needles as the MRI shows the prostate is fully engulfed and it now involves the bladder, lymphnodes, seminal vesicles, urethra and tail bone. I am sick and scared beyond words - but i know each and every one of you and your partners have felt the same at some point in this journey.  That said, I would welcome any positive words you can offer because right now i feel that it is looking a bit bleak.  Thanks all for your time!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3647
Joined: May 2012

As you probably know by now, the main number provided by a prostate biopsy is the Gleason Score, which authoratatively shows how aggressive (or non-aggressive) the PCa cells are.   A "6" is the least aggressive, and a 9 or 10 are the worst.  Be aware that a few days or longer may be required to get the biopsy data back.

He will almost certainly receive an assortment of treatments, called combination therapy.   Surgical removal is very unlikely.   Hormonal Therapy (HT) is a certainty, while radiation and chemo are possibilities.  The order in which these are begun or overlapped varies by doctor.

My 'positive' thought is that, even in cases of aggressive, metastatic PCa (IF he has such), prognosis is usually measured in years, not months.   And we have a writer here who has survived metastatic disease for two decades now.....  Also, men in long-term HT most often report reasonably good quality of life.

max

GeorgeG
Posts: 152
Joined: May 2017

Max sums it up pretty good. The Gleason score and the profile of the cores is part of the puzzle. The score is stated as X+Y which is the aggressiveness of the most predominant followed by the less predominant cells. Most centers consider 3+3 and 3+4 as being less aggressive and 4+3 and up as more aggressive with 9+10 the most aggressive as Max said. This is not what you were hoping for but there is still more to understand for the whole story. Every man responds to treatments differently. Your husbands response to say hormone therapy will hopefully be strong to help slow things down and maybe even reverse the PSA trend. I had locally advanced 4+3 disease with a PSA of 22 at surgery and HT drove my PSA to undetectable quickly after it started back up. As stated, he may not have surgery at this point because radiation or other systemic treatments might follow anyhow. You guys may want to consider a second opinion. Remember that surgeons talk surgery and radiologists talk radiation. Depending on your insurance and willingness to travel there are many good top notch centers. That said, I will re-iterate that JH is excellent and this is a great start.

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