Please help has anyone here done phot... - Advanced Prostate...

Advanced Prostate Cancer

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Please help has anyone here done photon radiation

Bob10 profile image
48 Replies

My mo at Dana Farber sent me to a radiation doctor who wants to treat my prostate tumor with 48 treatments..of photons ..said it will Avoid problems later on..any help Would be appreciated

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Bob10 profile image
Bob10
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48 Replies
Tall_Allen profile image
Tall_Allen

Photons means X-rays, which most of us who have had external beam radiation have had. Are you sure he didn't say "protons"?

Bob10 profile image
Bob10 in reply to Tall_Allen

No tall ,photons radiation at Dana 44 treatments

Bob10 profile image
Bob10 in reply to Bob10

Someone must have had this ty

Tall_Allen profile image
Tall_Allen in reply to Bob10

You've had 6-7 widespread metastases. Two major clinical trials proved there was no survival advantage to prostate radiation at that point. Only side effects. Did you ask him?

Bob10 profile image
Bob10 in reply to Tall_Allen

He Said could stop urinary problems later on

Bob10 profile image
Bob10 in reply to Bob10

He said kill the tumor in my prostate

Tall_Allen profile image
Tall_Allen in reply to Bob10

To what purpose?

Tall_Allen profile image
Tall_Allen in reply to Bob10

Why not have a HoLEP TURP?

Bob10 profile image
Bob10 in reply to Tall_Allen

Not sure what HoLEp is or TURP but doctor did say they could have it cut out ..but I would have Worse symptoms like urinary problems Like leaking

Tall_Allen profile image
Tall_Allen in reply to Bob10

They are both ways of removing excess prostate tissue so it doesn't interfere with peeing.

Scorpio99 profile image
Scorpio99 in reply to Bob10

Bob10, I had 38 radiation treatments, along with 2 years of required Lupron injections, after my prostate was surgically removed because I still had a 4.2 PSA score, meaning the cancer cells had spread beyond the prostate. The radiation treatments were not uncomfortable and my hair didn't fall out, nor did it make me feel sick. I did have some dietary restrictions, with fruits & salads off my menu, and in the beginning there were diarrhea problems, however it brought my PSA score down to .01 for the past year and I'm now cancer free. It was therefore well worth it.

Bob10 profile image
Bob10 in reply to Scorpio99

Ty scorpio99 good to hear that

jedgar1 profile image
jedgar1 in reply to Bob10

I have been at DF for a year and a half. I had a met in a rib after prostectomy and 38 radiation treatments here in Florida. The Drs. here just wanted to give me lupron.

I went to DF for a drug trial that it turned out I didn't qualify for because of my doubleing time. I saw Dr. Chaudhury who does the trials and I asked if there was anything I could do at this progression of the disease to either cure it or at least get me some time off of treatment for a year or more.

They had me do SBRT on my Rib which is a trial, RO is Dr. Mai Ahn Huhnh (Win) at Brigham and Womans who I can't say enough about. She spent 45 minutes with me to explain what they were doing, what they expect and what I should expect.

And Dr. Chaudhury who spent over an hour with me on my first appointment put me on Lupron, Zytiga and Prednasone for Two years. After 6 monthes no PSA and no testosterone. I fly up to Boston every 3 monthes for Drs appointments, bloodwork, nutritionist the works.

My experience has been great but you have to be your own advocate. I went there because of the amount of Pca trials they had. If I call any of my Drs or treatment specialists I always get a call back the same day.

My Drs turned out to be Dept heads who also teach at Harvard Medical School.

I left florida for treatment because I didn't like their treatment plan.

Tell them you want another Dr. or go to Mass Gen. I was getting treated here at Hospital that also did Cancer. I wanted a hospital that Only did cancer.

I applied to MSK also but DF got back to me in days. MSK called for an appointment 4 weeks after I sent my informaion or I might be there. They had the same trials as DF.

Good luck.

Longterm101 profile image
Longterm101 in reply to jedgar1

I see dr chadhurry tomorrow

Seems like a young kid😉

How did u like him

j-o-h-n profile image
j-o-h-n in reply to Scorpio99

I had the same procedure 39 sessions. I had no side effects at all except 2 years later they saw I had a stricture in my left urinary tract. Doctors don't know if it was from the frying or the few kidney stones that I had in the past. So in and out went stents for several years (no biggie - trust me) and now 85% urine from right kidney and 15% from left kidney and no more stent (no pain at all). So be aware.

The only other comment I want to make (and don't kill the messenger) is that if you have cancer (and not to burst your bubble), there is no such thing as ever being "cancer free". Under control but not free.. 🤢

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/09/2019 7:12 PM EDT

cesanon profile image
cesanon

Could be laser burning?

Bob10 profile image
Bob10 in reply to cesanon

Doctors said Much more gentle treatment then sbrt

cesanon profile image
cesanon in reply to Bob10

What does that mean?

Sounds like you are getting BS.

They are selling you something, not informing you.

Run out of there, and get yourself to a major medical center.

Bob10 profile image
Bob10 in reply to cesanon

Doctors said to treat the tumor on my prostate to avoid problems later on

cesanon profile image
cesanon in reply to Bob10

Sounds like lasers.

Get several opinions before making a decision. Dr Lam would be a good place to start. He is a very good and clear communicator. He will do a good job of explaining your options.

Schwah profile image
Schwah in reply to cesanon

I am a patient of that office too. Different dr but I’ve met all three drs there and they have similar philosophies. They have no horse in the game and are used to date on all the studies. See what they recommend

Schwah

TEBozo profile image
TEBozo in reply to cesanon

Agree. My Doc. Richard Lam at Prostate Oncology Specialists is great. marina del Ray

Bob10 profile image
Bob10 in reply to TEBozo

TEBozo you agree with the treatment...are u getting this treatment

Sunnyvango profile image
Sunnyvango in reply to TEBozo

I agree, I took my 89 year old huband to the Prostate cancer specialists in Marina del Rey (for those who live close enough) for another opinion. They were great, and I'd highly recommend them! They srznt their recommendation to the doc here that will do the radiation and to the urologist and modified the treatment for my husbands age, focusing on quality of life, which is the most important thing if you don't have many years left to live.

Break60 profile image
Break60 in reply to Bob10

IMRT is much lower dose than SBRT , like 1.8 grays vs 10 grays per session but it’s not more dangerous . 48 sessions sounds like they’re radiating the pelvic lymph nodes or distant metastasis as well as the prostate. It’s usually 38 sessions to the prostate. Photon is the usual method of applying radiation. Proton is another methodology.

Bob10 profile image
Bob10 in reply to Break60

Sorry its 44 treatments

TEBozo profile image
TEBozo

I am 2 weeks into a Firmagon ADT shot with Lupron to follow for 18 months. IMRT radiation on May 25th for 8 weeks. PSA post op was 2.61. Dr. Lam with 18 years prostate treatment experience, was 100% in favor of Zytiga/Predisone and with bloodwork every 3-4 weeks.

GP24 profile image
GP24

Maybe your RO refers to this trial:

thelancet.com/journals/lanc...

It says:

Evidence suggests that prostate radiotherapy improves overall survival for men with metastatic prostate cancer who have a low metastatic burden, but not for unselected patients. Prostate radiotherapy should be a standard treatment option for men with newly diagnosed disease with a low metastatic burden.

Low metastatic burden in this trial was defined as less than four bone mets! Lymph node mets did not count.

Bob10 profile image
Bob10 in reply to GP24

Gp24 ty. Maybe that's what there thinking

Bob10 profile image
Bob10 in reply to Bob10

Doctor did say Radiation treatment was something new in the last year ..

TEBozo profile image
TEBozo in reply to GP24

"There is no doubt that Zytiga is potent and induces cancer remissions even after Lupron stops working. Treatments effective in advanced cancer generally proved to be even more effective against earlier stage disease. This logic is so simple one might wonder why doctors in academia feel the need to perform studies to prove it. The real reason comes back to cost. There is one potential argument against using the most active agents for earlier stage disease: the idea that there may be a benefit to holding treatment in reserve to serve as a backup in case standard treatment fails. Problem with this logic is that using effective therapy as a backup plan result in lower cure rate. The battle against life-threatening cancer should be viewed as an all out war. Delaying effective treatment merely gives the cancer more time to develop resistance. Results are best with immediate, maximal therapy."

Prostate Cancer Boob

Mark Scholtz, MD

Prostate Oncology Specialists

Marian del Rey, CA

Dayatatime profile image
Dayatatime

According to American Cancer Society it's another name for what's traditionally known as external beam radiation therapy.

cancer.org/treatment/treatm...

oncolink.org/cancer-treatme...

Ron

tango65 profile image
tango65

If you have doubts about the proposed treatment, you could consider getting an appointment with Dr D'Amico at the Dana Farber. He is an international known radiation oncologist with a large number of articles published about radiotherapy and prostate cancer.

dana-farber.org/find-a-doct...

By the way Dana Farber(an institution associated with Harvard) is the only National cancerInstitute designated comprehensive cancer in Boston. You are being treated by doctors working in a center of excellence.

en.wikipedia.org/wiki/NCI-d...

Scorpio99 profile image
Scorpio99 in reply to tango65

I didn't need to travel to Harvard for my post surgery radiation treatment, which has made me today cancer-free, I was able to ride my bike a couple of miles from my home to the clinic for the sessions.

Bob10 profile image
Bob10

Ty ron..tango65 that's my doctor Anthony D"amico

Bob10 profile image
Bob10

Dayatatime thanks your Right It's external beam radiation with photons

Scorpio99 profile image
Scorpio99

I had 38 radiation treatments, along with 2 years of required Lupron injections, after my prostate was surgically removed because I still had a 4.2 PSA score, meaning the cancer cells had spread beyond the prostate. The radiation treatments were not uncomfortable and my hair didn't fall out, nor did it make me feel sick. I did have some dietary restrictions, with fruits & salads off my menu, and in the beginning there were diarrhea problems, however it brought my PSA score down to .01 for the past year and I'm now cancer free. It was therefore all worth it.

Hi, what stage, what age, isolated, general health, PSA, duration?

Photon RT or IMRT, is excellent. Aduvant, ADT usually is combined.

The number of treatments varies on a many things. The RT Dr. Uses many computerized programs to design treatment parameters. IMRT is an excellent method; it's painless, and has 15-20 min treatment time. Just a couple of minutes under the

modulated source.

I had very few side effects.

Keep a positive attitude, its OK?

gleason9guy profile image
gleason9guy

I've done it. The doctors says it may have caused irritation to my bleeding, causing it to burn when I pee months later. They prescribed Uribel which helps, more or less.

Bob10 profile image
Bob10 in reply to gleason9guy

Did it lower your psa

gleason9guy profile image
gleason9guy in reply to Bob10

My PSA is undetectable at this time. Hard to say if it was the chemo, Lupron, radiation, or Zytiga that lowered it. They essentially threw the kitchen sink at me. My approach was to do everything my oncologist advised. So far, it seems to be the correct approach.

CalBear74 profile image
CalBear74

Please read "The Emperor of All Maladies", a history of cancer treatment by Dr. Siddhartha Mukherjee, set predominantly in Dana-Farber as he tells the stories of great cancer breakthroughs ( and winner of the Pulitzer Prize.) This is one of the world's great cancer treatment institutions. I get the impression that several people posting here are unaware of the excellence of care they deliver. This is not to say there can not be errors made by oncologists and urologists, but these physicians have demonstrated excellence in care and are monitored by their peers.

CalBear74

Cancer2x profile image
Cancer2x in reply to CalBear74

Yes DFCI has some great researchers and doctors. - for cancer! Side effects, not so much. After years if crying in the wilderness about my TOTAL, PROFOUND impotence, I finally gave up even asking, and decided the cancer control was the first in line. Last time, after another five years, I was told I could talk to a female Psychologist about it. Riiight.

I still trust my medical Oncologist so far, and they have a great cafeteria there.

Cancer, yes. Side effects not so much, although if you are puking I am sure they have an answer.

Oh, and not one doctor - ever - has asked me how my treatments have impacted my marriage. Not one. Ever. Even after complaining.

Go for the treatments, but don't expect much more than that. I am sure they avoid any sexual or relationship issues if at all possible. Not their main job. Glad to still be alive after all these years, but existing, not really living the full human experience.

CalBear74 profile image
CalBear74

Very well stated Bob. I am sure there are many patients who have shared your experiences at different hospitals nationwide .

theopolis profile image
theopolis

PROTON RADIATION? I had this procedure at loma linda university, its available in other parts of the country. Fast, easy procedure, about 30 mins total or less. I had 38 sessions, very few (negligable) side effects. Two types available...splatter, and pencil beam. If the application is right, this treatment can be amazing. I had surgery, adt, chemo...proton by far the easiest and least problematic ...for me, anyway.

Bob10 profile image
Bob10 in reply to theopolis

Ty so much ..the travel will be Tough everyday

Scorpio99 profile image
Scorpio99

If your doctor is recommending radiation and Lupron injections I'd say go ahead with it, as it got me to .01 PSA and cancer free.

Bob10 profile image
Bob10 in reply to Scorpio99

What was your psa before radiation ty

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