Regional or metastatic? Proton + ADT +???

[KAgolf]

Have a couple of questions I am hoping someone can help with. My husband (77) was diagnosed 1/14/21 with PCa; 4=5=9 and 5=4=9, grade 5. Six/12 cores, all left side malignant; all 6 right benign. PSA was 3.7 in 9/2019, 5.15 in 9/20, 8.18 in 12/20, and 10.43 before Degarelix injection 1/28/21. Last week PSA was 0.54 and T was 41.3 (296 on 1/28/21)

He has had CT, PET, Axumin PET, and two 3-T MRI's; all show 3-4 “suspicious" lymph nodes which 1 doc says are round, not elliptical so that's what makes them suspicious.

With all those tests, NOT 1 radiologist will commit to calling them malignant or benign--all say suspicious, so they are being treated as malignant. He has also had a bone scan and no bone malignancy was seen.

bottom line seems to be 1/2 prostate malignant, plus 3-4 (probably) malignant nearby lymph nodes...... now for my questions:

URO oncology surgeon calls it advanced, very aggressive, metastatic PCa, with extremely high risk. He also calls it stage 4

Other terms used by other docs call it "regional", but do not say metastatic.

I keep reading "metastatic" means it has spread to other parts of body or bones or distant lymph nodes, indicating that the local lymph nodes aren't considered metastatic. IS THIS CORRECT? IS his regional or metastatic? (I'm a bit OCD about correct term)

He was started on ADT right away: 1 mo. Degarelix, then a 3-mo. Eligard, followed by 2nd 3-mo. Eligard. Uro says 3 years on ADT; Proton radiologist says 18 months.

We asked about HDR early on and were told by uro and radiologist that HDR plus radiation or proton would be too much....not sure why they said this since I have read here that many men do that combo

After a lot of research and talking to other men, hubby decided on the Pencil Beam Proton Therapy instead of regular radiation.....will have 40 session with 3 phases:

ph1= 200 gy hitting both left and right sides daily and targeting prostate and ALL lymph nodes in area for 24 days

ph2: 200gy daily targeting prostate and "suspicious" lymph nodes in area for 9 days

ph3: 200gy (I think) daily, targeting ONLY the prostate for 7 days-I believe they call this a "boost"

In 2 days, he will be ½ way through sessions—with 45-60 min. drive each way, seems as if he’s been going for 3 months!!

The uro and MO are at MD Anderson Jacksonville; the Proton is being done at UF Health Proton center (we REALLY like and trust his Proton Radiologist who also has a better attitude about husband’s situation); I know MDA uro isn't too happy we went elsewhere instead of doing their radiation. We do not see the MDA MO again until after proton is finished when he will decide whether to recommend chemo or any other chemicals to go with ADT. At last meeting he mentioned “possibly” using docetaxel (6 doses, 1 x every 3 mo.)

He has osteopenia in 1 hip and osteoporosis in other hip—didn’t know this before the DEXA scan; his primary put him on Boniva. Is this good enough or does he need one of the bone strengthening meds mentioned here?

Wondering if anyone else has gone this route?

If there are any opinions or suggestions we need to consider before going to next step?

If there is a better alternative to chemo? Hubby says he does NOT want chemo.

Trying to be prepared with questions, ideas for next meeting with MO

[Tall_Allen]

Some definitions:

Local= in prostate only (stage T1-T3)

Loco-regional= in prostate, may be growth into nearby organs (T4) and/or into pelvic lymph nodes (N1) but no distant places (M0)

Metastatic= in non-pelvic LNs (M1a), bone (M1b), or visceral organs (M1c)

Stage IV can be T4, N1, or M1

So he has loco-regional PC and is getting proton boost therapy for it, which will be hopefully curative. He has to have 18 months of ADT with it. Chemo adds very little to the benefit.

[GP24]

I think the planned treatment is adequate for the situation your husband is in. Adding HDR can be done but can cause more side effects too. The standard duration for ADT following radiation used to be three years. A new study showed that 18 months works just as well, so he may get a break after 18 months.

Lymph node metastases in the pelvis are called positive nodes because statistics show that patients with these metastases live much longer than patients with bone metastases or lymph node metastases outside the pelvis.

I would observe the PSA value after the radiation and then decide if additional drugs are required to be added to the scheduled ADT. This could be Abiraterone instead of a chemo. I think this would be the better choice.

[KAgolf in reply to GP24]

THANK YOU so much--this certainly helps with the "questions to ask" list I am making, along with the info. to back up questions and suggestions. AGAIN, thank you

[Hidden]

You say MD Anderson. Do you mean Mayo?

[KAgolf in reply to Hidden]

NO, NOT Mayo; MD Anderson in Jacksonville, FL baptistmdanderson.com/

[treedown]

I have went through the same confusion about Stage 4, metastatic, regional, etc. When I finally was told I am of T3aN1M0 I was surprised but this forum helped me understand quite a bit. TA explained it well above. I am younger than your husband and had rather extensive radiation and 2 years of ADT which if all things remain the same I will stop in October. At diagnosis I had very high PSA, full gland involvement, suspicious lymph nodes and clean bone scan. Nothing to explain the high PSA and insurance refused a better scan. My treatment was also curative in nature and I am in the wait and see stage with anxiety when my 3 month shot and PSA test comes around. Best wished to you and your husband's successful treatment.

[KAgolf in reply to treedown]

thank you for your reply.....seems most men with GL9 have high PSA, but my husband didn't; his is obviously aggressive as shown by fast rising PSA before ADT started. he has a VERY enlarged prostate -- 104 cc, which is about 3 times normal size. I pray my husband's treatment will be curative--his proton doc has used the term "cure" while the MDA uro said" manage"--very opposite opinions.

wishing you the best and for only good news!!

[treedown in reply to KAgolf]

Sorry my Gleason was 7 (3+4). I never asked about the size of my prostate but it was pushing into my bladder on the right side where the majority of the tumor was. I haven't had any scans since before treatment but I guess I don't have any symptoms that would warrant any yet. My local docs said curative in relation to the treatment but my second opinion at a Center of Excellance said that I will be on ADT the rest of my life. Neither knows for sure so we'll see. My MO slipped 2 appts ago and said "it looks like I may have beat this thing". At my last appt he changed his tune to hopefully a nice long vacation. One day at a time.

[KAgolf in reply to treedown]

yes, one day at a time---best wishes

[mooman80 in reply to KAgolf]

My 71 yo father's situation is very similar to your husbands, gleason 9 very large prostate with suspicious local lymph nodes. Cancer found during TURP due to urination issues. No bone mets shown on the bone scan. Fairly low PSA for his age (upper 5s I believe). One of the doctors said high grade prostate cancer can sometimes not express much PSA given the cells are so malformed. Not sure if that is true or not, but that is what he was told!

He debated surgery vs. radiation and is opting for ADT plus IMRT after consults with several surgeons who concurred with that approach. Inquired about adding HDR Brachy boost, but was told given his previous issues with urinary blockage it probably wasn't the best idea. His MO plans to have him on ADT for 2-3 years.

Hoping the treatment is curative in his case and in your husband's case as well.

[KAgolf in reply to mooman80]

Sorry to hear about your father; has he started treatments yet?has anyone mentioned using the SpaceOar gel implant to spare the rectum? I originally thought it was used only for Proton but is used for radiation too....worth asking about. Hubby said it was not a pleasant procedure, but worth it.

spaceoar.com/

also, it you have access to a proton center, you might check that out too--very few in USA, but does spare other tissue.

wishes for great outcome for your father as well as my husband...thanks!

[mooman80 in reply to KAgolf]

He has started ADT and so far no side effects and he is feeling much better physically and urinary symptoms much improved. He starts radiation in June. I have heard mixed things about SpaceOar on here... RO thought there would be no issue treating tumor close to the rectum once it shrunk down a bit on ADT.

[KAgolf in reply to mooman80]

My husband also on ADT which has not shrunk prostate; so far no side effects from ADT but everyone says they'll come.We talked to 2 other men about spaceoar before hubby had it--for us it was a no-brainer--didn't want to chance temporary or permanent bowel incontinence. There is also a newer version of SpaceOar, which can be seen on CT scan so it doesn't require another MRI to make sure it is contoured properly.

Did the doc discuss or recommend rectal balloons or nothing at all to protect rectum.

We all have to do what is right for us, but I would suggest your father seriously consider the SpaceOar.

I just read posts on here for it and they all seemed positive--one doc didn't recommend for patient, but all others for that patient did. They will not/cannot use SpaceOar if there is any extracapsular extension on prostate

The SpaceOar is done at the same time they place the fiducial markers, so it isn't an extra procedure and radiation can start 2 weeks later or a little sooner

best wishes for your father's treatment to be curative.

[cesces]

It seems like the docs believe it's spread to the pelvic lymph nodes (it's hard to tell from what you are saying, but seems likely).

One solution is to bath the pelvis with radiation. Protons are good for targeting the prostate. Not so good for pelvic lymph nodes.

Before you pull the trigger I would get a second opinion from a radiation oncologist that does both targeted sbrt radiation and less targeted imrt radiation.

Measure twice, cut once.

Also the sbrt option will likely require 5 to 7 sessions compared to the 40 sessions you are being quoted for proton therapy.

The highly targeted sbrt in recent years has proven as good if not better than proton therapy.

Get a second opinion on sbrt and imrt radiation (for the lymph nodes) as an option.

[KAgolf in reply to cesces]

SBRT is NOT used for high risk, only low and medium risk...we did look into that. The 3-4 pelvic lymph nodes did not light up on either PET but showed "slight" activity and were different shape; NOT ONE radiologist would commit to calling them benign or malignant, so yes the docs are treating them as if malignant whether they are or not---better safe than sorry.I beg to differ on the proton vs SBRT--pencil beam proton is the most accurate beam there is AND it does not have the "splash" that radiation has. It is also less destructive to surrounding tissue than photon radiation-that's important for this area--bladder, rectum, kidneys.... That is why it is used for non-surgical brain tumors and eye tumors.

as mentioned earlier, hubby will be 1/2 way through proton treatments tomorrow

We are blessed to be close to a proton center--very few in country and people come from all over the world to the one in Jacksonville.

appreciate the reply and another viewpoint

[cesanon in reply to KAgolf]

"as mentioned earlier, hubby will be 1/2 way through proton treatments tomorrow"

Missed that

[KAgolf in reply to cesces]

SBRT had more gastrointestinal toxicity, more erectile dysfunction, and more urinary incontinence than Proton.a friend was treated with proton on neck for his lymphoma....cured, thank God

[cesanon in reply to KAgolf]

"SBRT had more gastrointestinal toxicity, more erectile dysfunction, and more urinary incontinence than Proton"

Interesting. I didn't know there was a difference in side effects. I was only aware of survival rates.

Do you have any citations for the side effect data?

[KAgolf in reply to cesanon]

these are both older reports BEFORE SpaceOar, which reduces Bowel toxicity(1)Researchers from UT MD Anderson concluded that proton radiation is associated with decreased urinary toxicity but increased bowel toxicity compared to IMRT; SBRT shows a similar toxicity profile to IMRT but has a higher risk of urinary fistula.

(This is based on 2008-2015 data ---before use of SpaceOar which started with Proton around 2015-2016; use of spaceoar would lower bowel toxicity)

journalofclinicalpathways.c...

(2)Conclusions: The use of SBRT and proton beam therapy for localized prostate

cancer has increased over time. Despite men of lower disease stage undergoing SBRT, SBRT was found to be associated with greater toxicity but lower health care costs compared with IMRT and proton beam therapy pubmed.ncbi.nlm.nih.gov/272...

newer report

(3) The five-year results of over 1,300 men treated at UF Health Proton Therapy Institute for prostate cancer were recently published in a peer-reviewed medical journal.1 As reported by UF researchers, the results revealed that the majority of these men are living cancer-free with minimal to no side effects. The five-year survival rates for low, intermediate, and high-risk prostate cancer are 99%, 94%, and 74% respectively – with less than 1% having experienced any bowel issues and less than 3% having experienced any urinary issues.

Because of the comparatively low occurrence of side effects such as incontinence, impotence, and fatigue, prostate cancer patients receiving proton therapy are able to continue working, playing, and living relatively normal lives both during and after treatment. floridaproton.org/ppc/proto...