Time to radiation treatment - Advanced Prostate...

Advanced Prostate Cancer

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Time to radiation treatment

Eddy-Merckx profile image
14 Replies

Hi Everyone,

In May 2020, my PSA was undetectable and CT and bone scans showed small lesions in a regional lymph node (I am on Lupron, Zytiga, and had chemo). Since last August my PSA has increased slightly from .03 in Aug, .05 in November, and .06 last December. Because the increase in PSA was small and the values were very small, my MO did not think there was any concern. However, at my February 23rd appointment, my PSA jumped to .22 and a CT and bone scan found a new met in a pelvic lymph node had appeared that was about 3 cm long. My MO suspects it is very aggressive because it has grown so quickly and does not appear to put off much PSA. My MO, in consultation with a radiation oncologist, concluded that radiation to the entire pelvic region was appropriate. My question is how soon do I need to get radiation? I have been trying to schedule the radiation treatment for the last two weeks , but for some reason, no one is moving very quickly. I now have a phone consult with a doctor at a hospital near where I live (I actually go to Dana-Farber, but live two hours away) on March 29th. It sounds like the earliest I could get radiation would be early April, which will be six weeks from when I learned about the aggressive lesion in my lymph node. Should I be worried that it will grow much more and possible spread?

Thanks,

Craig

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Eddy-Merckx profile image
Eddy-Merckx
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Tall_Allen profile image
Tall_Allen

Unfortunately, those low PSA-types tend to be impervious to hormone therapy and radiation. Maybe ask for a biopsy and IHC before you subject yourself to radiation that may not accomplish much. IHC would ideally include: AR (androgen receptor), PSA, PSMA, MSH2, MSH6, PD-L1,chromogranin A (CGA), neuron-specific enolase (NSE), synaptophysin (SYP), DLL-3, CD56, Somatostatin (SST). Dana Farber probably has most of those stains.

GP24 profile image
GP24

If you would get a PSMA PET/CT it would show more mets than you currently can detect with CT/bone scan. The cancer has already spread. This particular met may grow a bit within six weeks but radiation can still destroy it.

lakeheadguy profile image
lakeheadguy

My experience with Prostate Cancer.

October 2015 PSA 14.0 diagnosed with Prostate Cancer.

January 2016 - 37 radiation treatments and 2 hormone injections. Good news cancer gone: PSA .03.

Fast forward 2019. Scar tissue in prostate difficult urination. Green light surgery 80% of prostate removed.

Fast forward January 2021. Colonoscopy showed radiation enteritis (unrepairable radiation damage to large intestine).

January 2022 endoscopy showed radiation proctitis (unrepairable radiation damage to rectum intestine). Radiation damage in pelvic area can occur immediately and for up to 10 years post radiation treatments. Uncontrollable anal leakage manageable by diet choices.

Eddy-Merckx profile image
Eddy-Merckx in reply tolakeheadguy

Thanks for the info. The side effects concern me and I never thought of the delayed effects on the colon. Do you have suggestions on diet to manage the immediate side effects?

Graham49 profile image
Graham49 in reply toEddy-Merckx

Get a PSMA PET scan. If it turns out that you have just 2 lymph nodes infected (Oligometastatic PCa) you could potentially have stereotactic radiotherapy (SABR) to those infected lymph nodes with minimal side effects.

lakeheadguy profile image
lakeheadguy in reply toEddy-Merckx

Since nutrition has an impact on radiation colitis, you should start a low-fiber, low-fat diet on the first day of radiation therapy and continue it for 2 to 3 weeks after treatment, when symptoms of the condition usually subside.

Use prebiotics and probiotics.

A healthy digestive system aids the intestinal tracks.

Prebiotics are compounds in food that induce the growth or activity of beneficial microorganisms such as bacteria and fungi. The most common example is in the gastrointestinal tract, where prebiotics can alter the composition of organisms in the gut microbiome.

Probiotics are live microorganisms promoted with claims that they provide health benefits when consumed, generally by improving or restoring the gut flora.

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

FYI - My radiation experience:

Radiation - I've posted this before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/19/2022 6:52 PM DST

Duke2021 profile image
Duke2021

Hi Eddy, it’s Duke2021’s wife.Yes you’ve guessed correctly it’s awful news. My life partner of 41years slipped away February 17th surrounded by his family at home.

Sorry to read of your treatment concerns.

After 7years of researching advanced prostate cancer symptoms from treatments I would prioritize building your immunity and mental health. Resist training, gut health and plenty of sunshine surrounded with those who build you up will do the world of good. My husband was a strong selfless man. Praying for you.

CAMPSOUPS profile image
CAMPSOUPS in reply toDuke2021

Duke's wife. I am so sorry to hear of his passing. The picture you took of him not too long ago in a wheelchair outside was etched in my mind for a long time. I remember some posts of his weight loss also. I felt it so unfair that is what eventually happened to him and how it reminded me of my probable future and the future of many of us here.

I imagined him to be the strong selfless man you describe.

He seemed so alone with this damn diagnosis there in his wheelchair.

It just hit me hard and I can't imagine the sadness you have from losing him.

I am glad he had you and family at his side when he passed and I so much hope he didnt suffer much in the end.

I hope you continue to have family support and things to look forward to.

Hope the day will come sooner than later when memories bring a smile and not sadness.

Duke2021 profile image
Duke2021 in reply toCAMPSOUPS

Thanks my dear for such insightful and encouraging words.

He was a devoted husband and father. An amazing son and friend to all those who knew him. We grieve his slow loss of his mobility while he clung fast to his mental facilities.

He enjoyed his detective shows and was faithful witness to the end. Always leaning on Jehovah God for strength to ensure. We look forward to seeing him again anew in paradise when his favorite scripture will be fulfilled Rev 21:3-4. Bless you 🙏🏽

Eddy-Merckx profile image
Eddy-Merckx in reply toDuke2021

I am sorry for your loss. I strongly agree with your statement about immunity and mental health. I wish the medical oncologists provided more guidance about how to fight this disease beyond the medical treatments.

Carlosbach profile image
Carlosbach

Craig:

Wishing you a Yellow Jersey and many more Tour de France races (along with the other great bike races each year). I'm envious of your creative "handle" as I'm a big fan of the best racer ever as well.

My PSA never reached 6, yet my Gleason was a 9 and my first scans showed nodes in my lungs. My initial consult said I should plan on living another 18 months to two years. My oncologist prescribed just Lupron and Zytiga. Knowing what i know now i wish we had hit it with the chemo as well, but to date the ADT is working. Fortunately, 1.5 years later, my PSA and testosterone are at non detect levels, my latest scans (earlier this month) show no detectable nodes in my lungs, and the other nodes in my pelvis are continuing to shrink🤞. Even with this good fortune, I know I will be in shoes similar to yours sooner or later. It is my considered (and layman's) opinion is this disease manifests

itself in so many diverse ways that treatment of PCA progression is always a little bit of a crap

shoot. Fortunately for most of us the the disease learns and adapts slowly. From my discussions with my care team, odds are that your disease will not progress so quickly that your March 29 consult will be in plenty of time.

Best of luck and many prayers for your successful treatment.

Eddy-Merckx profile image
Eddy-Merckx in reply toCarlosbach

Thanks for the helpful information. I hope for yellow jerseys for all of us.

I've been reading PC posts for almost 3 years. Each man responds differently to treatment. My husband is finally responding to a drug called lynparza. There are so many options and treatments. Please get several options. We are knee deep into this treatment - we still contact several MO's for opinions. My husband was diagnosed at age 58 with one of the most aggressive that did not respond to SOC. Prayers to all.

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