Newly diagnosed !: What a blessing to... - Advanced Prostate...

Advanced Prostate Cancer
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Newly diagnosed !

Roberthale7318
Roberthale7318

What a blessing to find this group!

I was diagnosed with prostate cancer at the beginning of July 2018 with a Gleason score of 5+4 and a PSA of 4.7 . I guess that’s a low PSA score with that high of a Gleason . Not sure what that means. I recently had a bone scan and a CT scan . Fortunately the CT scan showed “no metastases .” Unfortunately the bone scan showed “intense activity“ in one spot and “moderate activity“ in two others.

I’m wondering if anybody has any experience with doctors and hospitals in the Raleigh/Durham area? I have heard that Duke university hospital has a good prostate cancer program. I would greatly appreciate any input/wisdom !

Scared and hopeful, ROBERT

11 Replies
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Welcome to the group. Sorry to hear that you have to join us, but glad you did. You will find a lot of support here from caring people who share a similar journey to yours. Like you, at diagnosis in 2015 I had a low PSA (4.65), Gleason 4+3=7, and jumped immediately to Stage 4 by having one bone “hot spot” (confirmed by bone biopsy to be a PCa tumor) on my lower pelvis. Three years later on ADT with Lupron and bicalutamide, plus recent chemo with docetaxel, I’m still hormone sensitive with an undetectable PSA, and interval resolution of my lone bone tumor.

I know it’s easier said than done, but take a deep breath and try to put the fear and panic behind you. I’m in central FL, and know the best places in the research triangle area to go for treatment, but Duke has a very good reputation. There are several people in here who can help guide you to s good treating facility and oncologist in your area.

I hope they follow up on the bone scan to determine if the hot spots are PCa related, or from another unrelated cause.

Prayers and best wishes to you.

Mark

Good morning Mark and thank you so much for your encouragement and prayers ! I am hoping that the “hotspot“ result of old injuries or other sources.

Interestingly enough I am also from Central Florida during the winter months and will probably get some of my treatments in that area in October when I return… I would love any guidance you have for facilities, doctors etc. in that area !

Gratefully ,

Robert

Hey Robert,

Always glad to give support and encouragement to a fellow “soldier” in this war! 😃

Your hotspots may very well be unrelated to your PCa, and I hope that’s all they are. I have had them show up where I broke my collarbone in a motorcycle crash about 10 years ago, and from a broken left ankle from football way back when I was 15 years old! The radiologists have a way of distinguishing them, as well as arthritic changes, from potentially cancer related hot spots. That left me with one PCa related hot spot on the bottom of my pelvis. Unfortunately for me, they did a CT guided bone biopsy of it (not a pleasant procedure) and the pathology report of it confirmed the presence of prostate cancer cells. But, as I said, it has not lit up the scan for over 2 years now, so I’m pretty blessed and happy.

I don’t think you can go wrong with any of the 3 NC facilities AlanMeyer mentioned in his reply. All are excellent. You just need to decide which one feels like the best fit for you, and the logistics of getting to them.

Not sure where you are in central FL when you’re down here, but I live in Leesburg, FL just NW of Orlando. There are several cancer centers in the area, but only a few capable of handling the needs of Stage 4 patients. I narrowed my options down to Moffitt Cancer Center in Tampa (90 miles away) and The Mayo Clinic in Jax (140 miles away). In spite of the shorter trip to Tampa I got a much better “vibe” from my initial contacts and responses from the Mayo. I’ve been very pleased with them. We also have used them for my wife who went through surgery, chemo, and radiation treatment for tongue cancer about two years ago, and has made a very good recovery, with no signs of any residual cancer, and with very caring and expert providers there.

Keep in touch, and stay healthy! You’re off to a good start, and will be around for a long, long time.

Mark

Good evening Mark and thank U thank U again ! I did play football back 50 years ago, both offense, defense and all five specialty teams so I got banged up pretty good 😩 didn’t go on the play in college but maybe they’ll be my “scholarship“ 😄 I am in Orlando October through May. So far the news is good about not having to get the prostate surgery . I am may be unrealistically hoping, that I can get radiation here in Raleigh and be done by the time I get to Orlando but it’s so helpful to have the personal input.

I must say, you and your wife have certainly claimed some mountains !

Warmly, ROBERT

Moffitt Cancer Center (USF) is a respected source of care, however, I get my cancer care at Florida Cancer Specialists (largest private cancer institute in FL, located in Brandon) and Mark Robbins, MD is the best uro-oncologist in central Florida. My regular doc is a urologist, Angelo Paola. Together they are a great team. Good luck.

Thanks Mark… It means a lot to have your input !!

I use the National Cancer Institute Designated Cancer Centers program to find good places to recommend to people. To see their full list see:

cancer.gov/research/nci-rol...

North Carolina happens to be a state where a lot of top notch cancer research and treatment is done. Duke University Medical Center in in Durham is one of three recommended hospitals in North Carolina recommended by NCI. Others are the University of North Carolina in Chapel Hill, and Wake Forest University in Winston-Salem. All of these places do research on cancer as well as treatment and they have doctors that keep up with the latest developments. Phone numbers can be found on the NCI pages.

Best of luck.

Alan

Good evening Alan!

I’ve all but decided to go to Duke . When I first checked last week, Duke did not except my insurance plan. By changing my address from Florida to North Carolina, I was very lucky in being able to change my insurance with United health to a supplemental policy with no deductibles Not sure if this would be helpful to anyone else but, you can change your insurance plan to any one of your choice with a “special election“ if you are changing your residence from one state to another, rather than waiting to October 15 .

As I was saying to Mark, I may be unrealistically hopeful but since I don’t have to get prostate surgery, at this point, I’m hoping that I can start radiation and hormone therapy right away, here in Raleigh, and be complete with the radiation treatment by the time I go to Orlando

Thank you again. You and this group has been such a blessing !

ROBERT

Hidden
Hidden
in reply to Roberthale7318

Robert, sorry to hear of this trouble, i will tell you my story, real quick summary, so that if it helps you in some way:

I too was recently diagnosed (Sept 2017) PSA 364, Gleason 9, mets to various Lymph Nodes and bones including femur, all kinds of bones in the pelvic region, the entire spine, from the lumbar to the thoracic to the cervical up approaching the base of the brain. ...Immediately went on Androgen Deprivation Therapy (Eligard / Lupron, et al) and ZYTIGA pills...radiation was not practical obviously, when you have that many mets, prostate surgery would seem a little absurd in my case (although interestingly enough there are some new theories emerging on this topic, that if you remove the "mother ship" of the cancer, even though one has metastases all over the place, it could potentially extend life) and if not for the groundbreaking studies in 2017 showing ADT injections + Zytiga has tremendous results, they would have gone to the chemo on me, but because the FDA approved the ZYTIGA as a drug allowed to be given earlier in the metastatic disease cycle literally like 4 months before i was diagnosed, i got lucky, and didnt do the chemo and went straight in for the Lupron injections + Zytiga etc...

Now, your situation is materially different...some of what I said might apply to you, some of it wont. Where are the bone mets showing on the bone scan, what part of the body? Ribs? Lumbar? Pelvis?

Roberthale7318
Roberthale7318
in reply to Hidden

Good morning!

I can’t even imagine how you must’ve felt when you found out the results from your CT scan and bone scan . I do know it must’ve taken a lot of courage and faith . I used to wonder why some people, with seriously terminal illnesses, continue to have hope and now I understand that just a few months and possibly a few days can be the difference between life and death with medicine evolving so quickly . You didn’t mention your prognosis but I’m assuming that you have had great success .

My “hotspot“ what is on my clavicle . There was also one “moderate activity“ on one rib and a “low activity“ on another rib. Other than that I was clear on the bone scan. The CT scan was completely clear .

Thank you so much for your wisdom and courage ,

Robert

I would recommend Dr Andrew Armstrong at Duke based on personal experience.

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