Gleason 9 SVI clear margins

[Lawsuites]

My urologist urges radiation . I am waiting for ultra PSA results. My regular Psa is 0.

I would like to avoid radiation if possible

[PaulC2]

After surgery, adjuvant radiation is considered standard-of-care for Gleason 9 T3. But if your life expectancy is low for some other reason (e.g., if you're 94 years old and in poor health), that could be a good reason to skip it.

Reasons you might or might not delay radiation:

• If you had a very brisk PSA doubling time before surgery (such as PSADT < 30 days), then you could try your luck with three or four ultrasensitive PSA tests spaced two weeks apart.

• But this is riskier if your pre-surgery PSA was low or PSADT very high, because some aggressive cancers don't make a lot of PSA.

What is it about radiation that concerns you? Of the six treatment modalities I've undergone so far, radiation was the kindest and easiest to tolerate.

In any case, you might want to consider transferring your care from a urologist to an oncologist, preferably one who is extremely well-versed in prostate cancer.

[Hidden]

You should talk to a Prostate cancer specialist not just a urologist ..ASAP if possible.

[Roland632017 in reply to Hidden]

Hi Lulu700

It is me again.

This morning I replied to Alan Meyer.

I was really disappointed with an Oncologist Armanda who I was supposed to consult on 25 January 18.

Yesterday I was knocked down from having a Nuc Mec Bone Scan to check my extent on my bone metastasis since I started the baking soda therapy.

My referring Physician was unable to be contacted and my previous Bone Scan was on 30 November 17 when I was getting my Prostate Cancer staged.

I have started baking soda which when mentioned brings hostility probably from all of you so I can understand when the Radiologist Jonathan Tow approach Oncologist Armanda for approval.

She knocked it back. Now the question should I follow blindly for someone's "expert therapy " knowing that my last Bone Scan is being reduced to zip/outdated.

Now I am a PCa survivor on Stage 4 D2.

I am pain/fatigue free and can do almost anything. Again I had sex and it is incredible but now with dry ejaculation.

Not to be critical/rude as you are all free to choose your own journey.

I personally admit I am using baking soda/honey; Ural, sodibic and green tea which is do basic and successful as I am happy with my progress.

To point out I would not like to mirror someone's journey of bad side effects and pain and suffering.

I do not know anyone who likes to trade places.

Hope whatever you decided ends in a happy ending.

This is my story and thanks for being patience,

Roland ( Honorary Doctorate???? )

[Hidden in reply to Roland632017]

I believe baking soda raises ph , which is good for most of us. I like it. And green tea too. Take care.

[Hidden in reply to Hidden]

I had Radiation . I think it is the least invasive of all of the Sometimes nessesary evils we must face in this fight for life..

[pkafka]

I strongly agree with the two previous responses. I too was diagnosed as a GL-9 w/svi. I made it 11 months post RP before I had to go through IMRT, Now it is a year almost 2 years since my radiation and there are indications of biochemical recurrance. So I am off to get a Ga68 PSMA Pet next month to try and determine just what is going on. I would move on from the urologist and find a Genitourinary Oncologist to work with you. At the GL-9 level there is no cure and the name of the game is to avoid metastasis. Please don't take risks, at our level this disease can kill. Yes, some of our treatment options are uncomfortable and distressing. But the alternative is not a good one.

Be well and watchful

[kmack57 in reply to pkafka]

pkafka, just curious, where are you getting your Ga68 PSMA PET ?

[ElemanJ]

I had surgery in May/June 2017 with Gleason 9, SVI and clear margings. For preventive reasons I took antiandrogens after that and on 05.02 I withh start with IMRT. If you are below 65 I think you should treat this aggresively and aim cure or atleast a longterm Remission. Wish you all the best.

[Break60]

I assume you had RP and this is your first reading post op? Good news ! I tried to avoid radiation and HT as well, but couldn’t. SRT is tedious no doubt but necessary for recurrence as is HT if you’re high risk. If it can cure you it’s the best option. But here’s the important point: it’s been found that you need a modern ct pet scan to locate the recurrence in order for SRT to more accurately target it . And be sure to use an RO who treats PCa frequently! . Bob

[Dr_WHO]

Welcome to the group! As you are Stage four it means that some of the cancer has left the prostate. As the urologist has done their thing it is time to find a medical oncologist, hopefully one that either is very familiar with prostate cancer or is an expert. For cases where the PSA is low they usually recommend radiation and/or hormonal therapy. Please know that the radiation treatments of today are nothing like they where even ten years ago. They have a lot more accuracy and use a lot less radiation. If you are worried but decide to go with radiation try to find one that also uses MNR to focus the beam even more.

Did they talked to you about ADT therapy? A series of game changing trials were published last summer in this area. The results of the Stampede and Latitude trials show that taking a mixture of Lupron and Zytiga offers significant results. References to them are listed below.

ascopost.com/News/55699

ascopost.com/News/55700

Please know that you are part of our family. You have a lot of people pulling for you. Most of them are smarter than me so please feel free to ask any question you have. Remember, people like us we have to stick together!

[Hidden]

I do not mean to be negative, however you should be seeing a Medical Oncologist who specializes in advanced prostate cancer; preferably a researcher.

Ask your Urologist to explain "Micrometastates" and the probably that with a Gleason 9, you will delevelope mets very soon.

I write this because with a Gleason 7 fifteen years ago, I developed mets within ten months of primary treatment. Three prostate cancer Oncologists all agreed that regardless of primary treatment and even with a PSA of 6.8, that I had cancer cells floating in my vascular and lymphatic systems. The only method to kills these little bastard is early chemotherapy. Oh you can delay disease progression with radiation, surgery, and hormone therapy, but in the end, you will be like most of the guys in this group - looking for a magic bullet to extend their lives.

See someone who is current and I guarantee that person is not an Urologist in the USA.

Look at mine and other's history in the group and also Google. Key words "Gourd Dancer Advanced Prostate Cancer". Read about done of the good things that Robert J. Amato is doing. I have also posted his trial results in this group.

Give yourself a fighting chance and kick this bastard down. Good luck and above all, stay positive

Gourd Dancer

[Hidden in reply to Hidden]

I like your comment “ not a urologist in America” ..My pc specialist made better decisions for me then my Uro.

[j-o-h-n]

To: Lawsuites

ditto. ditto and ditto.

Good Luck and Good Health.

j-o-h-n Friday 01/19/2018 9:58 PM EST