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Advanced Prostate Cancer
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Proton Therapy

I'm here looking for encouragement and knowledge

My dad has prostate cancer, he was diagnosed in 2011, They told him since day one he did not have many options because his cancer was extremely aggressive. We looked alternative treatments and we found immunotherapy. He is still doing that and he did HIFU 2 years ago.

Sadly, my mom was diagnosed with cancer as well and she passed away a month ago. Our family is putting our focus back on my dad after the long battle with my mom. We are not ready to lose him as well.

A new doctor is very impressed he is still here, he wants to start him in Lupron and radiotherapy. I found some information about Proton Therapy, is this a good option? sounds too good...

I just want my dad with us, for at least a couple more years

25 Replies
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You’ve come to the right place! Your dad is fortunate to have you as his health advocate

If you post your dad’s history I’m sure you will get lots of helpful advice. We need the following information (or as much of it as you and your dad can provide):

1) your dad’s current age

2) diagnosis - does he have advanced prostate cancer? Stage? Cancer spread to bones, lymph nodes, organs?

3) date of diagnosis

4) PSA at diagnosis and current PSA

5) Gleason score

6) Type of doctor or doctors treating him - does he see a medical oncologist who specializes in prostate cancer?

7) what region do you live in? Country and city (in case you would like a recommendation on a doctor or hospital for care

8) Treatment history

9) Your dad’s overall physical health now - able to walk? Exercise? Still able to work? Ability to tolerate his treatments?

Please post your answers and this knowledge community will offer ideas and encouragement

My best to you and your dad! And deepest condolences for the loss of your Mom 🙏

James

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Dimar. I had proton treatment in May and if your finances allow you go to Prague l had In continence for about 2 weeks after treatment which what l have heard from other people in the uk have it for the rest of their life proton treatment is very stress free but if you decide they will do the relative tests then the technical team works On a plan for treatment look up proton treatment on line in Prague it will give you a little more information don’t know if you remember the little boy where the parents took him from hospital in uk because he had a brain tumour well they took him to Prague from my experience you will not look back Good Luck for the future. Rob

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My treatment in the proton clinic in Prague was very non invasive and painless if you have had a biopsy having the gold seeds put in the prostate is just like a walk in the park my PSA was 8.9 in uk by the time l travelled to Prague it was 13.1 gleeson 4+3 with T2c l had 5 fractions of proton then put on Zoladex for 1 year at the moment my PSA 0.1 Don’t be afraid of proton it’s the best move I’ve made and the staff are so friendly and polite what there motive is to cure not treat . Rob

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Thanks for the answers!

We would like to get a recommendation for a new doctor, if it is possible. We are in Oklahoma, if someone knows a good doctor in this area, we will be forever grateful.

To give more background, my dad is 70 years old, his cancer has not spread to his bones or any other organ.

He was diagnosed in June of 2011, the latest scans were performed 2 weeks ago.

His PSA right now is 166, when he was diagnosed was 31.4

His gleason score is 9.

He has seen different doctors during the last couple of years, the majority of them refused to help us because they said he doesn't have a good prognosis, so they just sent us home.

We found a doctor and he has done immunotherapy with him, not Hormone therapy. Honestly, he has done pretty well in this therapy with very few secondary effects, but the cancer is starting to advanced (he did all his tests 2 weeks ago).

He did HIFU last year as well, it was helpful.

Our focus was the breast cancer of my mom and we put the cancer of my dad on the back seat, at the end we lost her.

One of the doctors, he saw 2 weeks ago recommend Radiotherapy and a drug called Eligard. When we were researching about Radiotherapy we found Proton Therapy and sounds like a better choice. We are not sure.

My dad is a very active man, he walks and works full time. He is under a lot of stress after all the battle with my mom so maybe that's not helping his cancer.

Thanks, for all your help. This has been a nightmare for us, I can't believe that I just lost my mom and I can lose my dad as well. I need some encouragement.

My parents are half of my life, I love them very much.

We hate this beast, this is a nightmare.

Thank you.

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Your dad needs a doctor who specializes in treating prostate cancer. If he can travel to Houston, I recommend going to MD Anderson. Here’s a link to my doctor - she’s very good but there are many excellent physicians there. It’s important to get immediate treatment with a PSA so high.

faculty.mdanderson.org/prof...

Hopefully one of our friends on this site may have other suggestions for doctors in Oklahoma.

Please keep us all posted. Our thoughts and prayers are with you and your dad!

James

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Thanks, I'm calling first thing tomorrow morning and we will get an appointment with her.

I don't care traveling to China if it is necessary, the health of my dad is my priority right now.

Thank you

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Hello Dimar,

I'm sorry to hear about your Mom and Dad. I'm not a doctor and not qualified to advise you but, for whatever they are worth, here are my thoughts on your Dad's condition:

First of all, I think proton therapy will be of no help for the following reasons:

1. With a PSA of 166, your Dad almost certainly has metastatic disease. In other words, the cancer has spread to multiple places in the body. Proton therapy is only used to treat the prostate itself, never for metastases elsewhere in the body. You could try killing the tumors in the prostate but most doctors believe that it won't do anything for tumors elsewhere in the body, and those are the ones that will kill the patient, not the tumors in the prostate.

2. Furthermore, the prostate has already been treated with HIFU. There may not be any live tumors there anymore. To add proton or radiation to the prostate now might do damage to your Dad but is unlikely to do anything that the HIFU hasn't already done (and done it without curing him.)

If your Dad has not yet had Lupron, Eligard, Zoladex, or any other androgen deprivation therapy, then Eligard (or the others) might be a reasonable choice for treatment, but I don't know what the radiation recommended to go along with it will do. Where will it be aimed? At the prostate where HIFU has already been done? At metastatic sites?

I think that what you need right now is exactly what you asked for, a recommendation for a good doctor. Here is a link to the National Cancer Institute's list of "Designated Cancer Centers". They are considered to be the best hospitals and clinics in the country for the latest research and treatment:

cancer.gov/research/nci-rol...

You can click the "Find an NCI-Designated Cancer Center" link on that web page to locate the nearest ones to you. The nearest one may be Harold C. Simmons Comprehensive Cancer Center at the University of Texas Southwestern Medical Center in Dallas, Texas. There are others in Houston (the outstanding M.D. Anderson Center), Memphis, St. Louis, Kansas City, and some other cities that aren't impossibly far.

What you'll be wanting is a "medical oncologist" with a specialty in prostate cancer (he or she may also treat other cancers but it's important that he or she be an expert in prostate cancer.) You don't want a urologist or a radiation oncologist. They aren't specialists in drug therapy, which is currently the only way to treat metastatic disease.

If it's hard for you to get to one of these centers, or if it's going to take a lot of time to get an appointment, you might want to start on Eligard (or Lupron or Zoladex - they all do the same thing), in order to get the cancer under some control now. I don't think it will prevent a move to stronger therapies soon - but get a doctor's opinion on that.

I personally would have grave doubts about radiation. If your Dad's current doc wants to radiate him, I'd ask what he's going to radiate and why. Is he planning to radiate the prostate? Why, if the cancer is metastatic and the prostate has already been treated with HIFU anyway?

As you know from your Mom, it's a hard journey. Your Dad's high PSA and Gleason scores are bad signs. Nobody knows how long your Dad will last. However, the fact that he hasn't had any hormone or chemotherapy yet and is still alive is a good sign. Some men are very sensitive to those treatments and get years of pretty good life from them. It's true that they have side effects, but a lot of men in this group have had them and are very glad to have the extra life that those therapies have given them.

I hope your Dad isn't too depressed. I've been married almost 50 years and if my wife dies before I do I don't know what I'll do. But I do know that my children and grandchildren would want me to stick around while I can, and my wife would have wanted it too. It's obvious that you are giving your Dad emotional support. I hope he can accept it and try the treatments that can help him.

Best of luck to you, your Dad, and the rest of the family.

Alan

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Thanks Alan,

My parents were together for 45 years, we are going day by day.

My dad is extremely sad but we know this is not the time for being sad, this is the time to fight for any chance we can have for his life.

I think the number is extremely high as well, but the Scans are just showing a small spot so that's why the doctor is saying the cancer just came back after the HIFU and it has not spread.

I don't trust his doctor anymore, I want a different opinion and whatever chance we can get.

I was not involved in my dad's treatment, my parents were very private and we found out about the cancer when my mom got extremely sick and they told us.

I asked my dad a copy of his records to look for a new doctor and I'm learning all of this.

Thank you so much.

i'm researching Dallas and I'm calling tomorrow morning.

Thanks

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Hi Dimar....I can sympathize with you. My husband was diagnosed in 2005 at age 63 with prostate cancer and in 2008 had HIFU performed in Germany; HIFU had not been approved in the USA. All seemed fine until November 2017 and again was told he has Prostate cancer. We have two friends who have had Proton Beam Therapy, Indiana & Loma Linda,CA with no after & side effects. We have met with the Doctor at the Proton Center in our area, MD and are seriously considering it. Our Insurance company will not give us a referral for "out of network" treatment, Kaiser Permanente. We have appealed the "denial - their reason for denial - 'Not Medically Indicated', in actuality - they will NOT pay for the treatment; but they will do regular radiation and any other procedures.

In all the research and comparison I have done - besides HIFU, I found Proton Beam Therapy the least invasive. There are now 25 Proton Beam Therapy locations in the country e.g. Loma Linda, Medical Center in CA.; Mayo Clinic; Proton Medical Center, Boston - check and see what is closest to you and check with your insurance company if they will pay. The costs quoted to us has been $52 and 54,000.00. Medicare will pay 80%

My heart goes out to you and feel your pain...I'm so sorry for your resent loss of your Mom and that you have to worry about your Dad. Keep your hope up high, I too have my ups and downs. Good Luck to you and your DAD.

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Hi Dimar,

Can you please also look for "Lutetium 177 PSMA 617", the combination with Actinium PSMA is also possible. This kind of treatment was found in Germany, Heidelberg. In the mean time all university hospitals in Germany uses this kind of treatment. As a matter of fact this kind of treatment is now entering fase III, there are nearly any gains in it for the pharmaceutical industry.

I'm following this treatment for the moment in Aachen (Univ. Prof MD Mottaghy), after 1 cure the result is hopefull.

Kind Regards.

StanyC

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i only know one man who underwent proton radiation and his results were bad. but, as i said, i only know the one. i'm sure there are others who have had better results.

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Good Morning Dimar,

You have already received much good advice, but here is mine:

1. No matter where you go next, your Dad needs a full body Axumin PET/CT to locate his cancer. With a PSA like his, it has metastasized and before you start treatment, you need to know where it is.

2. Your Dad has many treatment options, ranging from early chemo to a drug called Zytiga, but all are given against a background of Androgen Deprivation Therapy (ADT).

3. With the right Medical Oncologist and treatment plan, your Dad can live many more years. You need to be his advocate.

Best wishes. Never Give In.

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Thank you very much.

Ok, my dad had a Ct scan, is the test not enough? I will research it.

I'm just ready to find a new treatment this week.

Thank you. I'm on tears with the kindness of everyone here.

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14 weeks after prostatectomy my husband's first followup PSA was .69. That means some cancer was left behind. The Mayo Clinic ordered a C11 PET scan together with CT. Apparently the radioactive material they inject into the bloodstream "lights up" any cancer cells with this kind of scan. Scan was from the pelvic area to the top of his head. It detected a small amount of cancer remaining in the prostate bed. Radiation (of some kind, we haven't had that meeting met) is recommended. I don't know if this is applicable to your dad's situation. Perhaps the C11 PET with CT is what your dad needs to detect the location of cancer. I believe C11 refers to choline and its half-life.

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To do more research on proton, consider visiting this website created by and for users of proton therapy: protonbob.com/

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Check out-chips hospital in Tijuana Mexico they use here in therapy it has worked for .me.

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FWIW, I too was diagnosed in 2011, but I had a prostatectomy as soon as I could decide what to do. I am happy that I did. My cancer was described by my urologist / oncologist the same as your dad's - particularly aggressive. After surgery, i was put on Eligard. It took my O PSA down to undetectable. A year later, we tired a "vacation" which did not work out well. I went on Trelstar which was new at the time, and it worked well. It is still working well. My PSA remains undetectable. So you can have a reasonable amount of hope that you Dad will have many more years of a good life, although the side effects of Eligard and Trelstar can be unpleasant. (FWIW Eligard is the same as Lupron. Trelstar is almost the same, but with weaker side effects.)

Find a new doctor, look into Trelstar or Eligard as an ADT to push that cancer back. Look into chemotherapy if your dad needs it. Most folks here who have been through it, or are going through it, have tolerated it well. And know that there are more therapies available today, and more coming down the road soon. But foremost, find a new prostate oriented oncolologist.

Marshall

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Thanks, you are giving me hope.

I'm glad you are doing better. My dad says he is not very scared of the side effects now that he is a widow but still some of them sound very scary.

We want him to be confortable but alive.

Thanks

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Dimar, I am sorry for the loss of your Mom. I will echo what Alan said exactly, Will the Dr give him. some casodex to prevent the initial flair of eligard?If I understand correctly he has never had homone therapy ie lupron, eligard,zolodex ,casodex, zytiga/abiraterone , or xtandi. If not , I am surprised, but most men get a great response to initial treatment with Eligard, similar drugs are Lupron, zolodex, and Firmagon, of all those it is my understanding firmagon is the only one that does not cause an initial flare. It has been shown to be a little better, there are threads on Firmagon on this site from the search bar ,and men here doing it, it is more expensive. Flare can be prevented with the others by taking casodex/Bicalutamide pills prior to starting. It is so important to get a good MO specializing in Advance Prostate Cancer, I have heard of another MO from the Houston Area being Dr Robert J Amato he is in acedemia ,and is considered a world leader in Genitourinary cancers research , specializing in Advanced Prostate Cancer , google his name. I wish you the best, It is so good that you are advocating for your Dad, as a message of hope for you to show Dad, I was dxed stage 4 in 2006 with Gleason 10 and psa 148. Are you in South OK near TX?

Dan

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Thank you very much.

I'm researching Casodex and Firmagon. My dad agreed to start hormonal therapy of any treatment ASAP so we are trying to have something before Thanksgiving.

Robert Amato sounds like a good doctor, I called yesterday and they sent me an email with paperwork.

I'm impressed how kind people are. Thank you very much

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Dimar,

I think you will like MD Anderson. Our oncologist got a lot of his training there. They seem to be very cutting edge. Even if your dad has metastatic disease.. the outlook for adenocarcinoma of the prostate is still really good for most men. There are a lot of treatments. Spend some time reading through this forum.. There is a wonderful 2 hour video.(You can just listen) about a fellow who is using testosterone in his treatments and helping a lot of guys stop or slow their cancer growth. Many other treatments too... I am not an expert on them but the folks here know a lot.

My mom died from cancer and left my dad alone.. for the first year or two one of us(his children) lived with him after she was gone.. I think it helped.. and eventually we left him alone for a while. He lived with me the last 5 years of his life. If it is possible have someone with him or close by will help.. also grandkids make a difference. My dad was super close to my oldest son and when he was born(after my mom died) it was a ray of sunshine for my dad.

Prayers for you and your dad. There is a lot of reason for hope!

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Thanks you so much, I have so much hope today.

We haven't decided what to do about his living arrangements, but he wants to be in his own space. This is just plain hard for everyone

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My condolences about your Mother. You are an angel for looking after your Father. Hopefully he can get to see a Pca Oncologist asap who can give him the proper treatment that he needs.

You've come to the right place for info and comfort.

Good Luck and Good Health to your Dad and to all his relatives and friends.

j-o-h-n Friday 11/17/2017 4:30 PM EST

p.s. I fight the S.O.B. with laughter.

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Thank you so much.

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As a PCa sufferer who is in remission and the author of two books on PCa, I continue to be amazed by the first class advice offered by contributors to Health Unlocked. They are extremely knowledgeable and caring. By the way, I had successful Proton Beam therapy in 2013. Its great for PCa that is confined to the Prostate, but with your dad's high PSA reading its already escaped from the prostate.

The treatment recommended by the above is great. Another treatment that my brother had in Australia that is still under clinical trials in the USA is Lutetium -177 PSMA Ligand Therapy.

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