Newly Diagnosed- Questions

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

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

What InTheShop, JNF, JackH and Larry E said.

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

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.

Thank you, again, for all your responses.

We live in Fairfield County, Connecticut. Closer to New Haven than NYC.

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

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."

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.

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.

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.

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.