Scared looking for some advice - Advanced Prostate...

Advanced Prostate Cancer

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Scared looking for some advice

RocketTest60 profile image
63 Replies

I found out ten months ago that I had a PSA of 6.4. It rose to 9.7 and recently has subsided to 8.3. I did a MRI and they said I PI-RADS 4 with a lesion in my transition zone. Seminal vesticles and Neuromuscular bundes are symmetric. However one of my lymph nodes is boderline enlarged at 1.0cm short axis. Other pelvic organs are unremarkable. I have to wait til November for the biopsy. But I am concerned that I have cancer and it has escaped my prostate. Not sure.. just looking form some advice

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RocketTest60 profile image
RocketTest60
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63 Replies
OldVTGuy profile image
OldVTGuy

Heading into the unknown is what generates fear. Get smarter.

There is a lot of great help out there and making sure you have a good medical team is where it starts. This site and others are great places to double check your medical advice as you go along. The fact your doc wanted the MRI before a biopsy is a good sign.

RocketTest60 profile image
RocketTest60 in reply toOldVTGuy

Thank you

Tall_Allen profile image
Tall_Allen

Also, ask for a PSMA PET/CT to get more information about that lymph node. Ask for the new rhPSMA-7.3 radio-indicator if they have it - otherwise, whatever PSMA radio-indicator they have will do.

RocketTest60 profile image
RocketTest60 in reply toTall_Allen

I have to admit I am confused because it says

"LESION 1: Location: Right mid anterior transition zone and right apical anterior transition zone (series 3 image 72, series 4 image 16, series 7 image 17). Size: 1.8 x 1.5 cm (in-plane), 1.5 cm (extent), 1.60 cc. T2: Heterogeneous signal intensity with obscured margins DWI: Focal markedly hypointense on ADC and markedly hyperintense on high B value DWI DCE: Positive Prostate margin: No definite extra prostatic extension, but abuts the capsule by greater than 1.5 cm. Lesion overall PI-RADS: 4 Extraprostatic extension: No definite extra prostatic extension, but abuts the capsule by greater than 1.5 cm."

So when I asked the doctor.. I said do you think we caught it early enough and he said yes.. so then how does it get out to the lymph node.. or did i not get it early enough

Tall_Allen profile image
Tall_Allen in reply toRocketTest60

Only a PSMA PET scan can answer your question.

RocketTest60 profile image
RocketTest60 in reply toTall_Allen

Thank you. I would prefer if my doctor would have said the same. Looks promising but we won't know until we do the PSMA Pet Scan..

Justfor_ profile image
Justfor_

In the MRI report is there any mention of the lesion's ADC (Apparent Diffusion Coefficient) value (mean, max, min)?

ADC has a very broad correlation with Gleason score.

ncbi.nlm.nih.gov/pmc/articl...

RocketTest60 profile image
RocketTest60

Here is all my detail

PROTOCOL: Multiplanar T1, T2, T2 FS, Diffusion and ADC map sequences pre and post contrast were obtained. FINDINGS: Prostate size: 5.2 x 4.6 x 5.5 cm PSA: 8.3 ng/ml on 10/2/2023 Prostate volume: 60.28 cc PSA density: 0.14 ng/mL2 Quality: Good Hemorrhage: None Peripheral zone: No suspicious lesion identified Transition zone: Lesion 1, described below

LESION 1: Location: Right mid anterior transition zone and right apical anterior transition zone (series 3 image 72, series 4 image 16, series 7 image 17). Size: 1.8 x 1.5 cm (in-plane), 1.5 cm (extent), 1.60 cc. T2: Heterogeneous signal intensity with obscured margins DWI: Focal markedly hypointense on ADC and markedly hyperintense on high B value DWI DCE: Positive Prostate margin: No definite extra prostatic extension, but abuts the capsule by greater than 1.5 cm. Lesion overall PI-RADS: 4 Extraprostatic extension: No definite extra prostatic extension, but abuts the capsule by greater than 1.5 cm. Seminal vesicles: Symmetric, without evidence of tumor invasion. Neurovascular bundles: Symmetric, without evidence of tumor invasion. Lymph nodes: Borderline enlarged right external iliac lymph node measuring 1.0 cm short axis (series 7 image 10). Other pelvic organs: Unremarkable.

Justfor_ profile image
Justfor_ in reply toRocketTest60

Not illuminating at all. "... markedly hypointense on ADC ...". Sure, no doubt, but how much low? The lower, the higher the Gleason score.

j-o-h-n profile image
j-o-h-n

Scared? We're all fucking scared..........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/06/2023 6:49 PM DST

maley2711 profile image
maley2711

So here is one pathway for metastatic cancer .......

cancervic.org.au/research/p...

It can also travel via the blood or thru the nerve system......numerous pathways.

NOTHING can assure you that cancer hasn't metastasized, no matter what the diagnostics are for you. Scans have size limtations for detection, and no blood test can tell you with certainty. This is what HONEST docs should be telling cancer patients .....I think most of us want the truth, not sugarcoating. With all that said, it seems you still have a high probability of avoiding a PCa death for MANY YEARS !!! Probably more likely a different cancer or cardiovascular problem will end your life !!

Think positive, nothing gained from negativity, is there?

dadsdrdawn profile image
dadsdrdawn in reply tomaley2711

100% what my reply was based on :)

maley2711 profile image
maley2711 in reply todadsdrdawn

You are not the "poster", and I don't see the reply you mention? My reply addressed the poster's questions!!

Prostatefighter profile image
Prostatefighter

In the meantime while you wait , check out Chris Warks programme (his approach to cancer), he's actually releasing his modules for free at the moment. Can't do any harm and see if resonates with you x

RocketTest60 profile image
RocketTest60 in reply toProstatefighter

is that "Chris Beats Cancer" I've heard some good things..

Prostatefighter profile image
Prostatefighter in reply toRocketTest60

It is indeed, I highly recommend. Will also prime your body much more to receive any chosen treatments. I'll PM you

RocketTest60 profile image
RocketTest60 in reply toProstatefighter

Sorry Prostatefighter "PM you" what does that mean

addicted2cycling profile image
addicted2cycling in reply toRocketTest60

send you a Private Message

RocketTest60 profile image
RocketTest60 in reply toaddicted2cycling

Got it.. I was thinking DM.. bought it already and had been slowly moving to a plant based diet since early summer.. but looks like my cup of tea due to the spirituality component.

Fiddler2004 profile image
Fiddler2004

In the beginning, the word cancer can be terrifying. You've come to the right place for information. I also like some of the videos here pcri.org and here healthunlocked.com/redirect...

The good thing about most prostate cancers, if there are any good things, is that most are not an emergency. For me I'd say the 1st 6 months were the most difficult, all the tests, scans, medications, finding the right team of doctors (make sure you have an oncologist on the team, not just a urologist , my opinion) was exhausting. Good Luck to you 🙏

babychi profile image
babychi

Do not allow anyone to pressure you into treatment until post biopsy. We are high gleason score and 5 years post radiation therapy we are alive, fit and fabulous. Clean up your diet. Lift some weights, get some aerobic exercise and try to relax. Yoga, meditation and long walks have helped us. Great outcomes to you.🌻

anony2020 profile image
anony2020

Second what everyone have said. We have all been through it. It is rough but it gets easier. These days, the medicine is wonderful. Leave the worrying to your doctor.

Dont mind me. I am just another layman trying to make some sense of the whole thing.

Baldylocks profile image
Baldylocks in reply toanony2020

Bullseye!

Lifer69 profile image
Lifer69

Relax brother. I was on prednisone, zytiga and belly shots for two years. My condition metastasized to stage 4. These drugs keep you from sleeping and produces loss of appetite. What made these medicines work was the RSO from medical marijuana shop. It let me sleep and gave me an appetite to let the anticancer drugs work. Actually I think the RSO played a more major roll in my healing.

Today I’m cancer free (too small to detect). I still take the belly shots but no more anticancer drugs. I still need to take the RSO because the belly shots prevent sleep and appetite. I even went back to work after someone forgot how to control inflation.

Relax brother, there are a few dark corners to navigate(fear), time to live fearlessly.

OldGuysRule profile image
OldGuysRule in reply toLifer69

ok, I’ll bite, what’s RSO!

Lifer69 profile image
Lifer69 in reply toOldGuysRule

Rick Simpson Oil. It’s the entire marijuana plant reduced to its essential oils. Squirt a line on a ritz cracker, give it a cover and horse that down. An hour later I’m sleeping soundly for 6-8 hours. I wake up hungry so my weight stays the same. The belly shots have the opposite effect so it produces an even keel overall I can live with.

Ian99 profile image
Ian99 in reply toLifer69

Very interesting. If you don’t mind, what belly shots ?

Lifer69 profile image
Lifer69 in reply toIan99

Firmigon(sp).

dadzone43 profile image
dadzone43

Inform yourself. Knowledge will quell the fear caused by guessing.

OldGuysRule profile image
OldGuysRule

I just read your bio. You said “God was calling me”. Can you expound? Personally, I’m a Christ follower and He has thus far carried me through and I have no fear of the future.

85745 profile image
85745 in reply toOldGuysRule

Amen brother in Christ

lowT163 profile image
lowT163

Did you get the finger in the backside? Usually can feel the tumor if it exists. Not always. I assume your Dr. had you bend over.

RocketTest60 profile image
RocketTest60 in reply tolowT163

Its in The transition zone so its not detected by the DRE

Pharm1125 profile image
Pharm1125

Hi,

Can you get the biopsy sooner? Be persistent; I had the same scenario where my PSA went down and my urologist diagnosed me with BPH. 6 mo later I had full blown prostate cancer with EPE. The earlier u catch it, the better. Good luck

RocketTest60 profile image
RocketTest60 in reply toPharm1125

Biopsy scheduled for Nov 8th.

maley2711 profile image
maley2711 in reply toPharm1125

You probably had the cancer 6 months earlier.

VictoryPC profile image
VictoryPC

You need to educate yourself on the options. My PSA rose from 4 to 60 in 6 Months 12 years ago. Now it's stable at 2.75. I have full function and full quality of life. Don't let them scare you.

Rocketman1960 profile image
Rocketman1960

No matter what you do, Do Not throw out Western Medicine. There are many great treatments out there. Knowledge is king. Read the report and research until you understand what it is telling you. Be in the driver seat. A Good attitude can only help you so trade that fear for knowledge. I'll say a prayer today for a fellow Rocket guy.

Miccoman profile image
Miccoman

Stop, breath, relax. Stress is very bad. I know, I know it's deadly scary right now but you're early onto this and you will most probably be around a long time.

I was diagnosed with terminal metastatic prostate cancer (Gleason 4+5=9) in 2014 with a PSA of 60. At that time, best medical thinking said 5, maybe 10 years. It took 7 years for ADT to stop working and my PSA to rise above 2.0. So far my PSA has risen to 106 but seems to be responding well to Pluvicto and is now down to 92.

Read, educate yourself. Listen to Tall Allen.

Know one thing: the specialists you will be dealing with know a lot about very little so you have to be the generalist looking at things like quality of life issues and the wide variety of treatments available to those without remote tumors. Learn about the different kinds of radiation therapy, options with prostatectomy and, if localized, and not outside the capsule HiFu.

Especially look into issues around ED and incontinence as those are the most common issues at my local prostate cancer group.

OH, and do find a local support group and therapist. I have a wonderful local chapter of Cancer Support Community (formerly Gilda's Club) here in Rochester, NY. Talking face to face with people who have gone through exactly what you will be dealing with is invaluable -- especially the ones now free of the disease. And I finally have a local therapist, too. It's great to have someone to unload on and break down and grieve without causing family to freak out. You will need a place to let out your emotions freely be that raging bull or drama queen and have someone say, glad you got that out. You're right about...

There is so much involved that you should consult with more than one type of oncologist and always get a second opinion about whatever way you choose to proceed. It is a great stress reliever to find that your doctor was right in their recommendation or to help decide among several choices.

Since I began this adventure with "this is going to kill you" (not those words but it's what I heard and probably accurate just not as quick), I cannot speak to the various treatment courses open to you, just repeat what I've heard and read. At this stage, to me, quality of life is paramount.

Again: stop, breath, smell the roses, kiss your loved ones and educate yourself.

Docker53 profile image
Docker53 in reply toMiccoman

Excellent advise

RocketTest60 profile image
RocketTest60 in reply toMiccoman

Thank you

Scout4answers profile image
Scout4answers

Take a deep breath. Take time to educate your self. Start an exercise program.

In my opinion love and exercise are the most potent drugs in combating PCa.

See my profile for my path

Biru49 profile image
Biru49

RocketTest60, we're all scared. You're not alone. The following is a synopsis of my journey so far, along with a recommendation that I hope you will find helpful.

I was diagnosed with prostate cancer seven years ago. I had radical prostate surgery about two weeks later, followed by 38 rounds of radiation, five sessions per week, about two and a half years after the surgery. My PSA scores got very close to, but never made it to zero, after either treatment.

Some time after the radiation treatments, my PSA score started to climb and my doc recommended a PSMA scan. The scan wasn't available in Utah, where we live, so my wife and I travelled to San Francisco and the scan was performed at UCSF. Nothing showed up on the scan. Ditto seven months later at UCLA. Seven months later, the scan was available locally. Nothing showed again.

Another scan one month ago and six spots showed up in my abdominal area. The spots are tiny (3mm) and my doc told me the previous (not very long ago) PSMA scan would not have shown anything. That's the most important point in this note to you! My very strong advice is, to make sure, if you have another scan, the very latest radioactive isotope and machine are used, even if you have to travel to get them. You can't have these scans more often than about every seven months and a lot of 'bad' can happen during that time. Again, with the older technology, my scan would have shown nothing, basically an all clear, and I would not have started treatment one month ago.

I reviewed my scan results with my doc a little more than a month ago, I started treatment with Orgovyx, (Relugolix), Zytiga (Abiraterone), & Prednisone, (a steroid) seven days later. Two weeks after that, I had blood work. My PSA score was lower by 70%. Last Wednesday, I had blood work again. My PSA# dropped another 20% to 1.6. I'm supposed to continue taking these drugs for at least two years, much longer than I anticipated. That said, the results so far are beyond anything I had hoped for.

I will continue to have bloodwork every two weeks for the next two months to make sure my blood chemistry results remain normal and, of course, to monitor my PSA#'s. I will meet with my doc or his P/A each time to discuss these result, and also to report how I'm tolerating the drugs. So far so good, other than periodic hot flushes (flashes, as my mom called them). Hopefully, there won't be any other side effects.

Actually, there is another side effect of my treatment. Orgovyx and Zytiga are expensive. Crazy expensive. Thank you Medicare and supplemental insurance. If you happen to be on Medicare, shop around as the cost of these drugs can vary widely. They are sold only through 'Specialty Pharmacies,' something I had never heard of. We don't have a local specialty pharmacy so my drugs are overnighted to me.

An example about shopping around - the first pharmacy I tried quoted me a price of approximately $350 for 30 Zytiga pills, a one month supply. Another pharmacy is charging me $57 per month for the same exact pills. Using Goodrx is part of the reason for the lower cost.

Good luck RocketTest60. I wish you the very best.

Professorgary profile image
Professorgary in reply toBiru49

If you are taking one a day you can get 90 at mark Cuban cost plus drugs for $93. There is a $5 shipping and $5 pharmacy fee added to each prescription filled. I got 120 for $122 plus 10 for a total of $132. I got 120 because original plan was for standard dose but after the prescription was sent he said I could do 1 pill with a low fat breakfast. My results were similar to yours, Psa dropped 75% and ALP dropped from 141 to 114 in 25 days. God Bless!

Biru49 profile image
Biru49 in reply toProfessorgary

Thank you. I will check it out.

Biru49 profile image
Biru49 in reply toProfessorgary

Thanks for your comment. I did check it out, signed up and will save money because you were kind enough to let me know about cost plus drugs. I am on the one pill per day program with a low fat breakfast. It limits what I can eat but I am adapting. Learning to love oatmeal!! Thanks again, and best of luck to you.

Professorgary profile image
Professorgary in reply toBiru49

If you are on the 250 per day you can save more money by having your dr. Request 60, 90 or even 120 because there is the $10 shipping/processing fee with each transaction.

Mgtd profile image
Mgtd in reply toBiru49

Not sure which type of oatmeal you are using. I tried different types but settled on the Old Fashion type. Suggest you use a brand name like Quaker Oats. I found a huge difference in quality and texture between that and the store brand stuff. I also put in fruit. I suggest if you use bananas that you slice them and cook it with the oats. Any kind of fruit except watermelon works. To save money you can buy small cans of fruit - peaches, pineapple, etc. I only those packed in natural juices. No heavy syrup.

I do a 1/2 of cup at breakfast. Sometimes I will even have at my night meal.

Hope this helps.

in reply toMgtd

Here's one: NO COOKING!!

1/2 cup oatmeal 1/2 cup non fat plain yogurt, 1/2 cup non fat milk. 1 banana chopped . Blend in a bowl, top with fresh berries, refrigerate overnight.

Mgtd profile image
Mgtd in reply to

I assume you eat it cold like yogurt, fruit and granola. So oatmeal is replacing the granola.

in reply toMgtd

Cold after overnight Eats like custard!

Mgtd profile image
Mgtd in reply to

I am going to try that tonight.

Baldylocks profile image
Baldylocks

I’ve read the entirety of your responders today and you should take comfort that; here you’ve found a great resource and so much support. I certainly have and cannot shout their value and valor to me loud enough.

Godspeed to you and yours.

anonymoose2 profile image
anonymoose2

I read the other day from a member to drink low sodium V-8 juice

JWS13 profile image
JWS13

Need PSMA PET SCAN ASAP

RocketTest60 profile image
RocketTest60 in reply toJWS13

Before the biopsy ????

JWS13 profile image
JWS13 in reply toRocketTest60

yes..I had mine before the biopsy (don't let them bully u u can have it before!)...made all the difference in the world knowing I was "MET" free and I then knew I had some time to figure things out and schedule my TRANSPERINEAL biopsy with IV Sedation .. Best of Luck to you..

RocketTest60 profile image
RocketTest60 in reply toJWS13

I have a question I asked my urologist for a PSMA Pet Scan.. and he refused.. can I go doctor shopping

db1966 profile image
db1966 in reply toRocketTest60

Any reason why not? Have you had any treatments yet?

dadsdrdawn profile image
dadsdrdawn

Fear can be debilitating. Even if you are afraid of what you will find, try to find ways to be positive and take whatever current action you can take.

Gather a lot of information so that make informed decisions when you need to.

Find things that keep you busy, happy, and connected to friends and family.

My father recently passed at 88, after a stellar life of optimism, and always looking forward to something and NEVER dwelling on his 17 year battle with prostate cancer. Only the last week of his life was really hard, although the past year took it's toll on him, he STILL was planning on traveling to Africa, and Antartica.

He worked, played, imagined, and lived a vital and strong life, combining conventional medicine with holistic therapies.

I always urge men to subscribe to and listen to Dr. Geo Espinosa's newsletters, and his podcasts. He is an amazing human, and an MD that practices out of Langone Medical Center in NYC.

drgeo.com/

I will pray for you, and keep you in my healing thoughts. Be and stay strong. Your mind is the key to so much of the outcome :)

Sent with love,

Dawn

RocketTest60 profile image
RocketTest60

totally agree ..

RocketTest60 profile image
RocketTest60

I just want to say thanks to everyone and God bless..

JWS13 profile image
JWS13

Don't let any doc or person bully you or give you condescending answers or gaslight you...this is your life and you have every right to get the treatment and answers that work for you... when I first was dx I didn't know where to start. The best beginning for me was the psma pet scan. At that time I had not had a biopsy yet and UCLA was reluctant to give psma's to unbiopsied patients. In addition I had a jerk as a primary care doc and he didn't want to get involved in the controversy, so I stood my ground got a new doc and convinced UCLA to provide the PSMA. You will meet a lot of personalities (docs included) in your cancer journey some terrific, some complete assholes and the majority helpful and empathetic. Forge through the A-holes , get yourself a good team of knowledgeable people and KEEP ASKING QUESTIONS..it's your life your protecting...there are no stupid questions . good luck on your journey! See you on the other side!

IT"S CANCER... EVERYONE"S SCARED!

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