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Newly Diagnosed- Questions

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Prostate Cancer
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Concerned715
New Member
Joined : Oct 2016
Posts : 6
Posted 10/4/2016 8:56 AM (GMT -8)
My husband was just diagnosed.
Age 53
PSA Level 15.2
PSA Level 13.1 (two weeks later)
Biopsy 12 Core (last week)
This is what the Urologist told my husband today when he called with the results;
Showed on 1 sample
Gleason score 7
Next they would schedule a bone scan and a CAT scan.
My sister-in-law is a Oncology RN and said that we should contact a medical oncologist and schedule an appointment.
My husband's urologist is having surgery and will be out for 3 weeks.
We are very scared and I don't know the right questions to ask.
Any advice on what to ask the dr?
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InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 10/4/2016 9:13 AM (GMT -8)
Welcome to HW, sorry you need to be here.

First, the best defense against fear is knowledge. I get that you're scared, we all were, but husband has every reason to expect a good outcome. It won't be fun to go through and normal will change, but likely not as bad as you're imagining.

Check out the sticky thread at the top of the forum, there's a lot of great info there along with a good list of questions to ask. If go to a medical oncologist, find one who specializes in PC. PC can be a bit different than most cancers, so having an expert is good.

At this point, a bone scan and CAT aren't likely to show anything useful, but might have some use to establish a base line.

PC is generally a slow growing cancer so you have time to get a few second opinions and investigate the various treatment modes. You want to make an informed decision and not rush into anything. In addition to a URO you should also talk to a radiation oncologist to explore those options.

Hang in there and ask all the questions you want, we're here most days.
Andrew
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JNF
Veteran Member
Joined : Dec 2010
Posts : 5725
Posted 10/4/2016 9:14 AM (GMT -8)
First, relax. Nothing is going to happen anytime soon. Yes, he is too young and his PSA is too high, but it looks like it is a small amount of cancer that can be effectively controlled. You are doing the right things by researching and supporting him. Generally at this stage it is too early to go to a medical oncologist as they are more useful if the cancer can not be controlled by primary treatments like radiation, surgery or Active Surveillance.

That the PSA came down indicates something else is involved like prostatitis. Please get a copy of the biopsy results. That will tell you where the cancer was found and whether it was G3+4 or G4+3. This may make a difference in the treatment plans. Then get a second opinion on the biopsy slides either through Epstein (at Johns Hopkins) or Bostwick. They are the very best at reading prostate cancer slides. Determining the G score can be very difficult.

Then start reading about what PCa is and what it is not. An excellent place to start is the Prostate Cancer research Foundation at www.pcf.org. There are many great websites and books and many other members will provide you with information. Great that you found Healing Well as there is a wealth of knowledge and experience here that will help you.

Above all, do not rush into anything. He has plenty of time to research and make his decisions as to what needs to be done. At least 6 weeks and probably more like three months to adequately assess the situation and make decisions.

Best wishes
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JackH
Veteran Member
Joined : Oct 2013
Posts : 2037
Posted 10/4/2016 10:18 AM (GMT -8)
Welcome.

Naturally you are concerned...any time the word "cancer" is used, it can be concerning.

But when you read the "sticky" thread at the top of the page ("Newly diagnosed..."), you will learn that the professional medical societies don't even recommend doing bone scans or CT scans for such small amounts of PC and at low (below 20ng/mL) PSA levels...it is simply highly unlikely that there is anything that has spread, and that's what those scans are looking for. (The fact that your husband's doctor prescribed it probably indicates he's an older doctor who has been around a long time and was treating men a generation ago when men were more often symptomatic and with worse cases, and/or not up to date on the latest physician recommendations.)

The worst thing your husband could do is to rush into anything. Nothing in what you've described so far indicates any reason for anything otherwise. The best thing is to start learning about PC...because there is a lot that people don't understand about it. It is not like most other cancers.

In fact, your S-I-L's comment is a good example. There is absolutely no reason to see a medical oncologist at this point. Medical oncologists, in prostate cancer cases, are only for advanced cases. Your husband's case may not need treatment at all!

Take your time. Heed the advice already given and have his prostate biopsy slides re-read by a prostate pathology expert. With only one positive core, he'll want to make sure he's got a good reading of what it really is.

good luck
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Larry E
Regular Member
Joined : May 2016
Posts : 162
Posted 10/4/2016 12:28 PM (GMT -8)
Sorry your here,
but this is the Best place to get advice and find out about others experience with treatment. Others on the site know more than I and they will be posting soon. So just check back often and wait for the posts to roll in. This forum cares about you all.

Larry
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alephnull
Veteran Member
Joined : Dec 2013
Posts : 2452
Posted 10/4/2016 12:48 PM (GMT -8)
What InTheShop, JNF, JackH and Larry E said.
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Concerned715
New Member
Joined : Oct 2016
Posts : 6
Posted 10/4/2016 2:17 PM (GMT -8)
Thank you all for your responses.

I spoke with his urologist this afternoon, his Gleason is 3+4=7
The Dr said only 1 of the 12 samples had cancer. He said it was 7 mm.
I am scheduling his bone scan, CAT scan, and chest X-ray tomorrow. Hoping that it is contained.
According to the dr, after we receive the scan results he will have to decide between surgery and radiation.
It is all so overwhelming.

Thank you again for your kind and reassuring words!
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JamesE
Regular Member
Joined : May 2015
Posts : 286
Posted 10/4/2016 3:37 PM (GMT -8)
Hi Concerned,

Sorry about the diagnosis, I can clearly remember the stress my girlfriend (of 17 years) and I were under when we got mine. It's like everything started to speed up and it was hard to clearly figure things out.

Fortunately my girlfriend convinced me to get a 2nd and 3rd opinion, which I fought about at first. I liked the Urologist I saw and was happy just to stick with him but she went to a prostate support group and got some names of other Drs that the group leader and others respected. One was in our state(NJ) who had done thousands of Robotic surgeries and another was in NY at a respected Cancer Ctr. I did not want to go to these appts. but reluctantly agreed to the first one in NJ and after I finally got on the bandwagon and kept the NY appt. I finally started to realize that the more info I got the more things slowed down for me and I was able to think more clearly.

We eventually went to a 4th place in Maryland where I ended up being treated. There were different tests and opinions along the way that helped figure out my diagnosis and things were pretty hectic until I decided on a treatment plan but it was sooo important that I went to other Drs and made an informed decision.

To this day I am thankful for the time the original Dr took to explain my diagnosis and treatment options; he spent well over an hour and a half at the end of the day. But it was in my best interest to seek out cancer centers and Drs who specialized in Prostate cancer. I hope you both can take a deep breath and take some of the advice above and also be sure to get other appts with Drs. in the Pc field.

My GF continued to go to the prostate support group monthly through the whole process(she still goes monthly) and really helped me to educate myself about what we were facing. More knowledge definitely equaled more calm with a situation that is anything but calm....I wish you both the best...Jim
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halbert
Veteran Member
Joined : Dec 2014
Posts : 5814
Posted 10/4/2016 6:48 PM (GMT -8)
Welcome to our club. None of us wanted to be here...but here we are.

With a single G3+4, he classifies at the low end of "intermediate risk", which simply means that (a) he (and you) have time to figure out the options. To get the opinions you need. A Medical Oncologist might be interesting to talk to, but not usually needed at his point.

He really has 3 options:

Option 1: Surgery. Most commonly these days is what is called RALP (Robotic Assisted Laparascopy). For surgery, find a surgeon and team that has thousands of procedures under their belts. Ask the surgeon specifically about his/her personal record and side effect profiles. Don't jump at this too quickly. My diagnosing Uro told me I had six months to make a decision. You probably do too.

Option 2: Radiation. This comes in multiple flavors, if you will. Brachytherapy (seed implant), External Beam radiation, a hybrid version called SBRT, and others. It's best to talk to specialists in each flavor. Again, go for a team that has done a lot of them.

Option 3: Active Surveillance. Yes, with a single G7 core, in some programs, he would be eligible. AS means that you closely pay attention to it, over time, and if or when something changes, you take action THEN. Studies have shown that properly managed AS programs have no long term negative effects. The key is ACTIVE, and you absolutely have to follow the protocols.

To help us help you, please tell us where you're located, and where you're going to consultations. Perhaps we can steer you to a known PC expert near you.
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ASAdvocate
Veteran Member
Joined : Feb 2015
Posts : 1052
Posted 10/4/2016 7:43 PM (GMT -8)
Concerned, I second everything that Halbert has written above.

Also, with only one core of G3+4, he could research focal treatments like HIFU and Focal Laser Ablation. Those promise lesser side effects than surgery or radiation.

There is also Proton Beam Therapy, which is growing in popularity.

Clinical trials for PCa vaccines are now going on. Prostvac has received a lot of attention.

He has the time, and he should take it to fully understand the procedures and their consequences. Please try not to let him be bullied into any cure that he is not 100 percent comfortable with.
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celebrate life
Veteran Member
Joined : Dec 2014
Posts : 2111
Posted 10/4/2016 9:35 PM (GMT -8)
Hi concerned,
From one spouse to another a very warm welcome. You have found a very informative and,caring group of people to help you understand your tx options and to encourage you to find the Dr 's that will give your DH the absolute best chance for a positive outcome. Best wishes to you both.
Beth for Gary
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Concerned715
New Member
Joined : Oct 2016
Posts : 6
Posted 10/5/2016 6:37 AM (GMT -8)
Thank you, again, for all your responses.

We live in Fairfield County, Connecticut. Closer to New Haven than NYC.
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JackH
Veteran Member
Joined : Oct 2013
Posts : 2037
Posted 10/5/2016 7:36 AM (GMT -8)
Have you arranged, yet, for the prostate biopsy pathology second opinion?

If you've now read the sticky thread "Newly diagnosed with PC - read this thread first," you now realize that this is the most important next step.

It is the most important next step...
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Concerned715
New Member
Joined : Oct 2016
Posts : 6
Posted 10/5/2016 10:29 AM (GMT -8)
Bone scan and CAT scan scheduled for tomorrow. Appointment Monday with a different Urologist group.
Praying the scans are negative!
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CaliJR
Veteran Member
Joined : May 2015
Posts : 786
Posted 10/5/2016 10:57 AM (GMT -8)
Welcome Concerned715, sorry you have to be here. I think you have received some great advice above. Continue to do your research and make yourself your own advocates in this journey. If you get 4 consultations, you will get 4 different opinions on what treatment plan to do. In the end, it will be your husbands decision (in consult with you of course) on what treatment plan sounds right with hopefully the least amount of side effects. He is young so I am sure he wants to get through this without any long term side effects with the best results. I wish you both well on this journey. Take care and keep us posted.
-JR
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JackH
Veteran Member
Joined : Oct 2013
Posts : 2037
Posted 10/5/2016 11:13 AM (GMT -8)

Concerned715 said...
Bone scan and CAT scan scheduled for tomorrow. Appointment Monday with a different Urologist group.
Praying the scans are negative!


The collective wisdom of the members of HW/PC is that the first thing to do is to have your biopsy slides read by a PC pathology expert...I encourage you to read the "Newly diagnosed..." sticky thread. The 2nd opinion pathology is easy to do (your urologist's office will be used to handling the process for you because it is a common step) and inexpensive. It should be done now...before any treatment consultations.

When you read the "Newly diagnosed..." thread, you will also find the "best practices" documentation for bone scan/CT scans.

Diagnosed yesterday with a single biopsy core of unconfirmed 3+4, and already scheduled for scans and a 2nd urologist group...? You are "rushing."
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Concerned715
New Member
Joined : Oct 2016
Posts : 6
Posted 10/6/2016 4:10 AM (GMT -8)
What do we need to do to have the pathology reviewed by Dr Epstein?
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halbert
Veteran Member
Joined : Dec 2014
Posts : 5814
Posted 10/6/2016 4:53 AM (GMT -8)

Concerned715 said...
What do we need to do to have the pathology reviewed by Dr Epstein?

Ask your doctor to have them sent to Johns Hopkins to have them reviewed by Dr. Epstein. He (or his staff, more likely) will know how to do the details.
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JackH
Veteran Member
Joined : Oct 2013
Posts : 2037
Posted 10/6/2016 5:49 AM (GMT -8)

Concerned715 said...
What do we need to do to have the pathology reviewed by Dr Epstein?


Very simple steps. I'm afraid that the link in the "sticky" thread may be out of date, but go here for easy-to-follow instructions:

pathology.jhu.edu/department/services/secondopinion.cfm

They do a great job of making it easy, and your urologist's office should know exactly how to handle this.
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Concerned715
New Member
Joined : Oct 2016
Posts : 6
Posted 10/8/2016 12:31 PM (GMT -8)
Bone Scan was done last Wednesday, Dr called Thursday and said it looked good.
CAT and Chest X-ray were Friday.
Dr called back today (on a Saturday).
Said the CAT looked good. The Chest X-ray looked good. But he took a closer look at the Bone Scan and he sees some Scerlotic Lesions on his pelvic bone.
I can NOT believe he would not take a 'closer look' before calling the 1st time. Why would he give this information on a Saturday and say it could be nothing. But we need to schedule an MRI asap.
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Izzyblizzy
Regular Member
Joined : Oct 2006
Posts : 411
Posted 10/8/2016 12:48 PM (GMT -8)
Oh my goodness. So sorry for you as a new and hubby as newly diagnosed. Apparently there is something he is concerned about. I hope it turns out to be nothing, but obviously would follow what doc says.

Best wishes, and I remember being a brand new member 10 years ago! I hope everyone here is still helpful and always reaches out. Everyone was at that point at one point in their journey.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 10/8/2016 1:51 PM (GMT -8)

Concerned715 said...
But he took a closer look at the Bone Scan and he sees some Scerlotic Lesions on his pelvic bone. I can NOT believe he would not take a 'closer look' before calling the 1st time. Why would he give this information on a Saturday and say it could be nothing. But we need to schedule an MRI asap.

You just discovered why it is not standard of care to give bone scans to favorable risk men. The AUA, ASCO and NCCN (the top professional organizations) all recommend against it. Fewer than a percent are ever found to have bone mets. Remember, bone scans do not specifically detect cancer. He is right that it is probably nothing, which is also why the radiologist didn't mention it in the first report. What the bone scan has done is raise your anxiety level, and set off a search using even more expensive, time wasting, and non-conclusive imaging studies. You have no choice now but to track it down. I'm sorry you've been put through all this, and hope it is indeed nothing.
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John T
Veteran Member
Joined : Nov 2008
Posts : 4315
Posted 10/8/2016 6:49 PM (GMT -8)
Usually it is not necessary to see a medical oncologist, but with a psa of 13 it may require a bit more investigation. Psa is a ratio of both prostate volume and tumor volume. There is no way a single core of G7 would cause a psa reading that high.
Someone should be able to come up with an expected psa level based on tumor and prostate size and also be able to identify the cause of Unexpectantly high psa.
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Michael_T
Veteran Member
Joined : Sep 2012
Posts : 4041
Posted 10/9/2016 7:58 AM (GMT -8)
Once guys reach middle age and older, every accumulated ding and dent shows up on the bone scans. I was worried when it happened to me and I have subsequently seen dozens of guys here go through the same concern. Given your husband's diagnosis of one G7 core, it's highly unlikely to be PC that's showing up.

Still, I can certainly appreciate your concern--all of this is so new and I'm sure your head is spinning. Best of luck on your next steps and there's a very high likelihood that everything will be fine with the bone scan and--even better--that based on his diagnosis your husband has a curable cancer.
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Octorobo
Regular Member
Joined : May 2009
Posts : 437
Posted 10/9/2016 6:06 PM (GMT -8)
Welcome 715

Sorry you are here. It seems extremely unlikely that anything related to PC is going to show up on a bone scan. Are you dealing with a very experienced PC doctor? Your sister in law is giving you less than knowledgable advice. Standard protocol would offer a MO after primary treatment, and the a secondary follow-up procedure. I would hope you could step back, take a breath, and go to a top tier PC facility with recognized doctors who know what they are doing and why they do it. Been nine years- not new to this world of PC.
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