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TREATMENT ADVISE PLEASE PSA 4.5 GS 8 & 9 WITH LYMPH NODE INVOLVEMENT

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Posted 6/6/2018 2:14 PM (GMT 0)
My very healthy, very physical, hard working husband, 60, just got his diagnosis of PC last week after being monitored for SLOWLY rising PSA. His PSA had reached 4.5 and it didn't appear as though the dr was overly concerned because it wasn't uncommon for a "a man his age." An MRI, biopsy and bone scan later he has multiple nodes that are malignant, GS of 8 & 9 and he's been told that there is "lymph node involvement." My husband has had a preliminary phone consult with Dr. Datolli from the Datolli Cancer Center in Sarasota FL who had reviewed Bob's MRI and biopsy reports and from those, told Bob that he should have all of his previous tests redone that the ones he had done were "too cookie cutter" and that they needed to be done by a clinic that does "just prostate screenings" in order to get a clearer view that would also include lymph nodes in a color coded view. He also said that if anyone mentioned surgery that he "should walk away" he advised him to do brachytherapy with hormone treatment.
We have an appt with Moffitt Cancer Center in Tampa today to get a second opinion.
To make matters worse, I lost my father in October to what began as PC which metastasized to his spine and hip. It was tragic to say the least!
We can't go through that again!
We just want to be sure that we take ALL of the right precautions, ask all the right questions, and chose the right course of action.
PLEASE HELP!
Posted 6/6/2018 3:02 PM (GMT 0)
Gleason 9, multiple lymph nodes are involved.....I suspect they will start off with ADT (hormone), probably add chemo and perhaps move on to some form of radiation treatment..Be sure your insurance company is on board, they will balk about repeating all the tests which should not be necessary...
Posted 6/6/2018 3:06 PM (GMT 0)
If not done yet, please read at the top(1st post) " Newly diagnosed with PC? – read this thread first". I'd start at the last page & last comment, then work your way through from the beginning. Let us know how the consult goes. You'll find lots of friends here.
Posted 6/6/2018 3:13 PM (GMT 0)
Get as much info as you can. I think Fairwind in on target. So sorry to hear you news on your Dad but know that there is lots of hope for you husband. Keep us posted.
Posted 6/6/2018 3:29 PM (GMT 0)
You are with two excellent centers in Florida for what you are facing.

Certainly no surgery should be considered. The use of combination external beam radiation including the nodes and brachytherapy is the most effective local treatment. The ADT is certainly indicated for a period of perhaps 18 to 24 months. As to other initial treatments like chemo, there are several studies that indicate when it is most effective and Tall Allen certainly has a grasp on those. As to additional investigative items, listen to both clinics and see what each approach is. Many professional prefer to direct the investigation. Datolli has been leading edge for a long time with both investigation and treatment methods. I would find it hard to argue with him. Also see what Moffitt says.
Posted 6/6/2018 4:14 PM (GMT 0)
I think that you don't need all the diagnostic work re-done, but you should consider getting one more scan, a particular PET scan. It is free at NIH. It will provide assurance that there are no distant metastases before deciding on a treatment. There are no other places I know of that provide a free PET scan for high-risk patients. I don't know if he qualifies because of the positive nodes, but do ask. They require a rebiopsy afterwards. Here's the contact info:

/clinicaltrials.gov/ct2/show/NCT03181867

Johns Hopkins has announced a similar study. Call to see if they have begun recruiting for it:

/clinicaltrials.gov/ct2/show/NCT02420977

At UCLA, they charge $2650 for a similar PET scan in high risk patients. Contact: Johannes Czernin 310-206-3226

At the University of Wisconsin:

/clinicaltrials.gov/ct2/show/NCT03232164

All the other US trials of PET indicators for high risk patients require the patient to have a prostatectomy afterwards, which I don't believe to be his best option. There are many options for patients who are recurrent after treatment, but the use in high risk patients is a new developing application, and one that is long overdue.
Posted 6/6/2018 4:34 PM (GMT 0)
(continued)

If the PET scan finds no distant metastases (pelvic lymph node metastases are called "regional" rather than distant. It is staged as "N1"), there is hope that he can still be cured.

Here's an article that discusses the use of hormone therapy plus whole pelvic radiation to treat lymph node positive PCa:

/pcnrv.blogspot.com/2016/08/adt-and-radiation-for-first-line.html

While the following comparative study did not specifically address men who were lymph node positive at the time of treatment, it did find that high risk men did better if they had an additional radiation boost to the prostate using brachytherapy compared to radiation plus hormone therapy alone or surgery, even if it was followed by radiation therapy.

/pcnrv.blogspot.com/2018/03/brachy-boost-therapy-and-surgery-extend.html
Posted 6/7/2018 10:26 PM (GMT 0)
Firstly, THANK YOU to all that submitted advice it's all been very helpful, fretful and knowledgeable!

Our hopes of having a clearer treatment path after consulting at Moffitt yesterday were dashed when we were told by the surgeon that an appt needs to be made with an Oncology / Radiologist to clarify whether or not there is lymph node involvement and if so, where.

I asked the surgeon if the test results and scans were what he needed to access Bob's PC. He stated that they were "adequate" NOT what we wanted to hear!!!

What's most disturbing is that NO ONE has yet to mention a PET scan. Is that not necessary for an accurate diagnosis for telling EXACTLY where Bob's cancer is???

The dr. told us that Bob's cancer is "aggressive in the sense of prostate cancer" and he would like for him to seek treatment within the next 3 months but that it could be years before this cancer is life threatening. REMEMBER we don't even know EXACTLY where the cancer is, so how can the dr. say it's not life threatening but not make the call about whether or not the cancer is in Bob's lymph nodes???
The dr. also told us that due to the type of cancer that Bob has that his chance of reoccurrence was 20 -30% whether he treated with surgery or radiation and then he spoke of "salvage surgery" and "salvage radiation" NOT really terminology I was comfortable hearing especially since we are PAINSTAKINGLY TRYING to make the right choices now so that "salvaging" isn't in our future. It's that unreasonable???

We were given yet another pamphlet by the PA to read over but told NOT to "read too much into it" and to not Google anything. WTH??? One of the things that I did read was that if Bob chose radiation that he would need to avoid contact with small children and pets in the beginning. Again I say WTH??? What about me who sleeps next to him every night??? Geese this is ALOT to think and worry about!!!

Datolli's PA mentioned that they would put Bob on hormones prior to treatment to ICE the PC and because she knew Dattoli would require all of Bob's previous test to be redone
(I'm sure our insurance co. will be on board with that plan!) the timing would more than likely put Bob at an August treatment date. How long can Bob's PC be put in an ICE mode??? And please tell us about your experiences with side affects from hormone treatments. I believe in majority rules...

We are mentally exhausted and it's only been a little over 3 weeks since Bob's diagnosis. I was told that this was the most exhausting phase because once treatment was decided you could just focus on the course of action and follow through. But until then...

Our greatest source of info has been from friends that have already experienced PC. Most of them are many years into recovery and feel as though "many things have changed" so this forum which has been so insightful and helpful was recommended by one of those friends, thank you DJM.

THANK YOU ALL AGAIN FOR YOUR TIME AND ADVICE! PLEASE KEEP IT COMING. IT IS MUCH APPRECIATED!
Posted 6/7/2018 11:11 PM (GMT 0)
B&R206,

You've got some of our most knowledgeable veteran and elite(!) members advising you already, they know much more than I, so I won't say much. Mainly I want to give you encouragement. A few specifics, though:

Dattoli and Moffitt are excellent. Other good choices for you, if you want further consults, would be Dr. Debra Freeman in Tampa (CyberKnife) and Dr. Matthew Biagioli in Orlando (Florida Hospital). It's very important to feel comfortable with the doctor and team who are treating you. In central Florida there are a lot of great options, so feel free to explore.

Many of us are on ADT (hormone therapy), either as part of primary treatment or together with salvage RT. It's not fun, but it's tolerable. The reason most ROs would start your husband on it two months prior to radiotherapy is that it weakens the PCa cells and makes them more susceptible to disruption by the radiation.

Mental exhaustion is not a good place from which to make medical decisions. Even with high-risk PCa, you don't need to decide yesterday. It won't jeopardize your husband's health to take a complete break from PCa for a week -- no doctors, no HW, no Google, no pamphlets -- and go on holiday somewhere if you can. Then come back to it refreshed. There are many good therapies. When you're confused by what doctors are telling you, we'll be here to help you sort it out.

Very best wishes to both of you.
Posted 6/8/2018 1:20 AM (GMT 0)
Your frustration is coming through loud and clear, and you are asking many of the right questions. I'd like to give you a pep talk about patient empowerment. Those good questions are exactly what you should be asking his doctors - that's what the meetings are for. If the doctor doesn't mention a PET scan, it's up to YOU to find out about it. All key decisions are in your hands, and if you don't speak up, those decisions will be made for you.

You should always go into meetings prepared with questions in writing. Here are some tips for managing the doctor/patient relationship:

/pcnrv.blogspot.com/2017/12/managing-doctorpatient-relationship.html

Getting back to the PET scans. The reason I gave you those links is so that you would call them to see if your husband qualifies. you don't have to rely on anyone else to do this - call them yourself. They usually welcome calls from patients.

To address the other points you raised...

The doctor was right to let you know upfront what the odds of success are, and what salvage is possible if it isn't successful. They should also inform you about the potential side effects of treatment and the approximate odds of those occurring. it's a LOT to take in, so take notes.

The hormone therapy will prevent any further progression for a very long time, probably at least 10 years. But when it is used as part of brachy boost therapy they would only give it for 6 months to a year, probably. Side effects generally are cumulative, so short-term use has fewer side effects. He will probably experience hot flashes and emotional lability while he is on it, and his libido will drop to zero. (very similar to a post-menopausal woman). It's all reversible when he stops taking it, although the reversal will not be instantaneous.

It is true that if he has permanent seeds as part of his therapy, pregnant women, pets, and children should not be in close contact for several weeks. You may wish to sleep apart for that time, although you are not in a vulnerable risk category. There is a different kind of brachytherapy, called "high dose rate brachytherapy" (HDR-BT) where nothing is left inside, so there is no danger of radiation exposure to others. I think Moffitt now offers HDR-BT.

There is one of the world's pioneer (seed) brachytherapy doctors in Florida - John Sylvester at 21st Century Oncology in Bradenton.
Posted 6/8/2018 3:29 AM (GMT 0)
I was treated by Dr Datolli 5 years ago. It was a very positive experience. A stand alone facility with a very helpful and professional staff. All the treatment equipment is in one location. More importantly, he has been treating nothing but prostate cancer since the 1980's.The man knows his cancer.

The feel of the place I was to endure this treatment was important to me. "The feng shui" if you will. Other facilities I had consults at were either impersonal, industrial bureaucratic corporate hospital settings and or chaotic.

As far as becoming a danger to others with Brachy, it's not really an issue. Simply don't sleep on top of your spouse or have small children or pets sit in your lap for extended periods of time for the first few weeks. That controlled radiation release is potentially curing you.
Posted 6/8/2018 4:31 AM (GMT 0)
Hello and welcome B&R!
Now go hug the member who sent you here. Because this is the place to get the most current and best information about PCa and compassionate support from all the members. You can follow your Dr 's advice and not google, because Tall Allen and a few others have already done the search. I'm sure because you just went through this with your dad (I'm so sorry), and from what you already posted, you have a decent understanding of terminology, but if something throws you, look in the sticky threads at top of page.
I lost my DH about a year ago to PCa, and while I have moved on in many areas of my life, I keep finding myself back here in HW. It's kinda a family thing. I gotta check in and then I see a post from someone like yourself. Sooo, as to the hormone therapy. That was where I feel like we weren't really given a clear picture of how immediate and lasting the side effects would be. Both of your lives will change to a new normal beginning with the first injection. But the benefit from ADT should also be quickly evident. I can only share our experience and what I have been told here. For us the loss of libido was immediate, and sexual intimacy was a thing of the past. The hot flashes began as a soaking of the sheets night sweats, and the bed linen had to be changed at least once a night. But his hot flashes improved over time, enough that he could laugh at me when I stuck my menopausal head in the freezer. Also, stamina at first was greatly affected until his body adjusted somewhat to the lack of testosterone. Without stamina, it is hard to exercise regularly, and my DH had some weight gain (he was already skinny, so NBD), and loss of muscle mass is not uncommon. The scrotum and penis may also atrophy depending on the length (no pun intended) of time on ADT and how much effort is put into maintaining that particular muscle for that day the therapy may no longer be needed. For some this is a big issue, others not so much, and for others the "new normal" becomes just the norm.
I'm sure I have either missed some stuff or have sent you into a state of panic with more info than you'd like, so I will quit now. But I did wish someone had better prepared me going into ADT, especially since it is always the first tx with mets.
Best wishes. You have good reason to be hopeful and expect a very good outcome with treatment for your hubby.
Beth
Posted 6/11/2018 8:47 PM (GMT 0)

Hello B&R206 ~

You've found a tremendous resource, right here, at Healing Well.

We've got members from every corner of this country, and from all across the globe, as well.

There's power and solace in that ~ because here, the members can share insight, new research, first-hand treatment experiences, and advice when asked.

More than anything else, it's important to say that WE'RE ALL IN THIS TOGETHER. Just checking in on this website can provide you with information, support, and encouragement ~ while waiting for those all-important doctor appointments.

Here at Healing Well ... you can read ... you can learn ... and you can POST ... twenty-four hours a day, year 'round.

My own diagnosis came into my life, unexpectedly, five years ago, after a lifetime of perfect health. I continue to pursue treatments --- but more importantly, I continue to stay active. I think that's important to hear from OTHERS when you first become diagnosed. On diagnosis day, it's a whirlwind of emotions ... and worries, fears, and anxieties abound.

What helped me most was getting STARTED on some treatments. That was an important day ... I had a PSA of over 100 when I was first diagnosed. My doctor started me on ADT shots ... and within the first month, I began to see tremendous improvement, in terms of diminishing PSA scores.

Those initial treatments brought my PSA down to single digits ... that was a very important day ... and over time, with ongoing treatments, I have been able to keep my PSA in the decimal range. We ALL have our own individual treatment path ... each case is different ... and my treatment history is shown at the bottom of this post, beneath my signature. One treatment at a time ... one day at a time ...

I think it's valuable to hear that members here are leading active lives. I am still working full-time, I walk each day, I pursue my usual hobbies & interests, I attend social events, and I work on volunteer and charity projects ... these are perhaps things I did not imagine could be possible when I was first diagnosed.

It takes a while, but I assure you ... you WILL find your way forward ... and there are many new treatments available to help you reach new health goals. New treatments and medications for prostate cancer have emerged in the past decade, and there's new studies and clinical trials ongoing, each and every day. Just some HOPE and ENCOURAGEMENT to share with you.

Best of all, there are many new medications and treatments that are ALREADY approved and available to you right now.

We have all stood at that "spot in the road" where you are standing right now. Keep walking forward ... don't get mired in the mud. There's an ancient proverb that states, "The journey of a thousand miles begins with the first step." The most important thing ... keep moving forward ... one step at a time.

Meanwhile, I have some advice for you. Find the SEARCH BOX at the top of your computer screen. Type in this thread titles, as follows: LETTERS TO THE NEWLY DIAGNOSED.

You will find this thread immediately when you type it into the search box. There you will find a wide array of LETTERS written for those who just got "the news" of a health diagnosis. Read the letters, one by one ... and I believe those letters will LEAD YOU FORWARD. Some members print them off, and read the letters, one by one.

Once you get a treatment plan started, let us know how you're faring. I hope that you will continue to check in here at Healing Well. Read ... reflect ... and post whenever you wish ...

Just wanted to reach out today, with a message of hope, support, and ENCOURAGEMENT !

Handshake of support, from across the miles,
CYCLONE ~ Iowa State University
Posted 6/11/2018 10:36 PM (GMT 0)
Again, I offer my sincere appreciation to those of you that have taken your valuable time to give us advice, encouragement and support.

There's SO MUCH to take in, evaluate and conquer!

At least now with the help of this wonderful forum both Bob and I are feeling hopeful about being able to educate ourselves so that we can better chose the tools, meds and doctors that we need to slay this dragon!

Checking in everyday!

THANK YOU ALL!!!
Posted 6/12/2018 12:33 PM (GMT 0)
H B&R... just wanted to say hi from a g-9 guy and offer encouragement in your search for a treatment option. As a couple of members have said PCA will become your full time job for a while but after you will have a new norm. Not bad just different from what you have now. My only suggestion is make sure you are your own advocate find the best medical team you can be a part of that team choose a treatment ( don't have to make a decision today) and then proceed. Wishing you the best on your journey of PCA.

Larry
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