1. < Prostate Cancer

What should I do next?

Posted by newtothegroup @newtothegroup, 5 days ago

Currently, I have been diagnosed with mastasic prostate cancer. I have been going for check ups every three months so I'm just confused on how I got here. About three years ago, I was hospitalized due to an inflamed prostate. After that, I was put on antibiotics and my PSA went down to a 8. My PSA was a 90 PSA three months ago and doctor said that they would adjust my antibiotics. Three months later I show up and my psa is 300 now, doctor ordered the biopsy and cancer was found 12 of 12 samples with Gleason score of 9 on all. Also my scan showing all spread to lymph nodes. Currently the doctor sent me home saying that they would start me on orgovyx in a two weeks and then apply for a clinical trial which could take three months to get started.
I am super worried to be sitting here with no treatment and just want to start something.

Does my story sound familiar to anyone else? I just don't know how it got this far with checkups every three months. Doctor said after I'm put on the hormone pill that he will see me again in three months to see how it's working. Is that the normal frequency?

Help please....

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

gently | @gently | 4 days ago
In reply to @newtothegroup "The doctor that has been treating me for the last year is the person running the..." + (show)
@newtothegroup

The doctor that has been treating me for the last year is the person running the clinical that he wants to add me to. It is only for metastatic prostate patients I believe. I have to ask for more information. Just felt like I wished that a biopsy was ordered three months ago when my PSA was 90. Thanks for the help all.

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newtothegroup, you'll be quite valuable to any clinical trial for metastic prostate cancer. And that value will be passed on to others in time.
The doctor who treated you for the last year should have ordered an MRI a year ago. It would be good to find a new internal medicine physician. You may not want to change urologists, but I suggest you might be better served. Most important now is to research the clinicals. I'm hoping you will get your records and send them out for second opinions on the best trial for you. It may be easier to keep your present doctor. And sometimes that's all we can manage. Somatic testing of the tumor looks at the somatic mutations in the tumor itself. Knowing this can tell you the chemotherapeutic agent most likely to destroy your specific tumor. The testing is done on the biopsy samples already obtained. You only have to request the testing and then wait.
https://www.cancer.gov/research/participate/clinical-trials/disease/prostate-cancer/treatment
Bless your search.

.

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1 reply
newtothegroup | @newtothegroup | 4 days ago
In reply to @gently "newtothegroup, you'll be quite valuable to any clinical trial for metastic prostate cancer. And that value..." + (show)
@gently

newtothegroup, you'll be quite valuable to any clinical trial for metastic prostate cancer. And that value will be passed on to others in time.
The doctor who treated you for the last year should have ordered an MRI a year ago. It would be good to find a new internal medicine physician. You may not want to change urologists, but I suggest you might be better served. Most important now is to research the clinicals. I'm hoping you will get your records and send them out for second opinions on the best trial for you. It may be easier to keep your present doctor. And sometimes that's all we can manage. Somatic testing of the tumor looks at the somatic mutations in the tumor itself. Knowing this can tell you the chemotherapeutic agent most likely to destroy your specific tumor. The testing is done on the biopsy samples already obtained. You only have to request the testing and then wait.
https://www.cancer.gov/research/participate/clinical-trials/disease/prostate-cancer/treatment
Bless your search.

.

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Thank you. When the doctor was talking to me, they said it was a genetic cancer. I asked for my records, so I have the biopsy results, regular blood panel results, and then a summary of the PEt scan. I didn't see anything about genetic in the package that they gave me. I also ordered a CD of the PET scan so I can show a 2ndMD specialist and possibly to the cancer center (with links to MD Anderson ) if I can get an appointment.

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3 replies
ecurb | @ecurb | 4 days ago
In reply to @newtothegroup "Thank you. When the doctor was talking to me, they said it was a genetic cancer...." + (show)
@newtothegroup

Thank you. When the doctor was talking to me, they said it was a genetic cancer. I asked for my records, so I have the biopsy results, regular blood panel results, and then a summary of the PEt scan. I didn't see anything about genetic in the package that they gave me. I also ordered a CD of the PET scan so I can show a 2ndMD specialist and possibly to the cancer center (with links to MD Anderson ) if I can get an appointment.

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Jeffmarc is the MAN- listen to his advise- he has more experience than anyone I ve spoken to on this forum.

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jeffmarc | @jeffmarc | 4 days ago
In reply to @newtothegroup "Thank you. When the doctor was talking to me, they said it was a genetic cancer...." + (show)
@newtothegroup

Thank you. When the doctor was talking to me, they said it was a genetic cancer. I asked for my records, so I have the biopsy results, regular blood panel results, and then a summary of the PEt scan. I didn't see anything about genetic in the package that they gave me. I also ordered a CD of the PET scan so I can show a 2ndMD specialist and possibly to the cancer center (with links to MD Anderson ) if I can get an appointment.

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You can get a free, genetic test here

Prostatecancerpromise.org

Do not pick the option that you want to get your doctor involved or they will not send you the test package until I’ve spoken to your doctor.

You just spit in a tube and Send it back to them. A geneticist will call you about the results

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gently | @gently | 4 days ago
In reply to @newtothegroup "Thank you. When the doctor was talking to me, they said it was a genetic cancer...." + (show)
@newtothegroup

Thank you. When the doctor was talking to me, they said it was a genetic cancer. I asked for my records, so I have the biopsy results, regular blood panel results, and then a summary of the PEt scan. I didn't see anything about genetic in the package that they gave me. I also ordered a CD of the PET scan so I can show a 2ndMD specialist and possibly to the cancer center (with links to MD Anderson ) if I can get an appointment.

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The doctor is saying that you have inherited genes that make you more suscetible to this cancer. Somatic testing is a test to detect mutations in the tumor itself. It is these mutations that are now being identified as being vulnerable to specific chemotherapy agents.
This information can only be gleaned from the tumor biopsy samples.
The spit test will give you good, but completely different, information about the genes you inherited.
Many taking the Decipher Test are only interested in knowing how aggressive the cancer is. But the test prepares a grid telling your specific tumor's mutations.
I had somatic testing of tumor which revealed that the three chemotherapeutic agents prescribed for me had been proven ineffective against the mutation in my tumor. The grid suggested several agents that were in clinical trial that might be effective. Because of that grid, I was able to avoid the side effects of medication that could not help me with the cancer.
While you are waiting to see if you can get an appointment with an MD Anderson linked oncologist, you might want to try to get a couple of appointments elsewhere. I want to say--be agressive. Many clinical trials pay for your participation and travel. Be willing to travel, because this is your life.
https://decipherbio.com/decipher-prostate/physicians/decipher-grid/

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ozelli | @ozelli | 4 days ago

“ I just don't know how it got this far with checkups every three months.”
Are you saying that you had psa tests every three months for 3 years?

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1 reply
bens1 | @bens1 | 4 days ago
In reply to @newtothegroup "Thank you. I will plan on joining in Tuesday. Also, I reached out to start the..." + (show)
@newtothegroup

Thank you. I will plan on joining in Tuesday. Also, I reached out to start the process with a local hospital cancer center that has associations to MD Anderson.

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@newtothegroup
You might want to send your medical information to a center of excellence for a second or third opinion via Telehealth. Time with all this prostate stuff, is generally not your friend.

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1 reply
bens1 | @bens1 | 4 days ago

One other thought…you might might want to contact Dr. Himanshu Nagar, a radiation oncologist at Memorial Sloan Kettering for that Telehealth opinion. I used him for a Telehealth appointment when he was at Weill Cornell.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @jeffmarc "It sounds to me like you need to find a new doctor. Do you have ability..." + (show)
@jeffmarc

It sounds to me like you need to find a new doctor. Do you have ability to go to a center of excellence where there are multiple doctors who can review your treatment options? You should be set up for treatment besides orgovyx. You should be seeing a radiation oncologist to find out what they can do with radiation. Considering how serious your cancer is, I would recommend finding a Genito urinary Oncologist, They specialize in prostate cancer, unlike medical oncologist. You will get much better care from one of those type of doctors. I would highly recommend you come to one of the Ancan.org Weekly meetings. There will be one next Tuesday at 6 PM Eastern time. Go to the website and find out about it. They can give you some really expert advice, and there are usually three doctors in the meetings. Get there early five or 10 minutes before the meeting starts and you will be the first one they talk to and give advice to about your options

You should not start Orgovyx Until after you have had a PSMA pet scan. You mentioned the results of a scan, was that a PSMA pet scan? If you did not have that type of scan then you want to find out if there’s cancer in more places in your body and that is the way to do it? Let your doctor know you really want to get that scan, before you start Orgovyx. Orgovyx Will reduce your PSA and make it harder for the PET scan to see cancer in your body.

When your PSA hit 90 your doctor should have done a biopsy. You actually should’ve been tested more frequently as well. At a recent Ancan.org Online meeting, a doctor who’s a regular, talked about his urologist who finally figured out he had prostate cancer. While his PSA was rising, his doctor didn’t do anything and said everything was OK Once the PSA really got excessive, he finally got a biopsy, but it was a little too late and he had a serious amount of cancer. You are not alone in getting poor answers from a urologist.

When you get on Orgovyx it will stop your cancer from growing, at least for a short time. . You need to get a PSA test within one month of starting Orgovyx. Just to make sure it’s working. With your high Gleason score, I would recommend monthly PSA tests because your cancer might be able to get around Orgovyx sooner. Your urologist might not be aware of this, find an GU oncologist or a center of excellence, Your cancer is way beyond the expertise of a urologist.

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@jeffmarc, I appreciate your conviction and enthusiasm when sharing experience and even advice. Keep in mind the golden rule on Mayo Clinic Connect and don't tell members what the "should" or "must" do.

- Community Guidelines: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

@newtothegroup, I'd like to add my welcome. You've gotten a lot of great advice from many members. As you've already discovered, making decisions in the prostate cancer world is a lot. It's a steep learning curve. It can help to hear from others when preparing for appointments with your medical team and to know what questions to ask. Ultimately the journey is yours and may have variations, depending not only on your cancer, but your preferences.

As Jeffmarc and others have suggested, you might wish to consider a second opinion. If your local hospital has connection with MDAnderson, you might wish to go to the expert team at MDAnderson for an evaluation and treatment plan and the treatment could be administered locally. Or is the cancer center with associations to MDAnderson where you are going for a second opinion?

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2 replies
newtothegroup | @newtothegroup | 3 days ago
In reply to @ozelli "“ I just don't know how it got this far with checkups every three months.” Are..." + (show)
@ozelli

“ I just don't know how it got this far with checkups every three months.”
Are you saying that you had psa tests every three months for 3 years?

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Yes. I had a PSA test every three months for three years.

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