Proton Therapy Centers

Hello,

I am 52 years old, Gleeson 6, psa before biopsy was 4.07 total, T1C stage.

A couple of days ago I visited the Proton Therapy center at NorthWestern in Chicago.

Has anyone had there treatments done there and can you share your experiences.

Also I was wondering what kind of side effects did you get from your treatment, short and long term.

I can travel to any Proton center in the country so I just trying to determine the methods that are being used at each faciltiy and which was is the safest for the patient for short term and long term side effects.

I.E Loma Linda uses the balloon, more treatments at a lower dosage, they make a special molded to position in place.

NorthWestern uses a hydro gel spacer instead of the balloon, they insert gold seeds into the prostate to determine where to apply the radiation and they use a higher dosage of radiation and less treatments.

I have been talking to the intake nurses at these centers and I am not really getting a clear answers on which method is least likely to expose the patient to fewer side effects. My guess is the method used by Loma Linda is the one that is the safest for the patient. Unforturnatlely Loma Linda is a stickler with my BCBS but I have been approved here in Illinois where I reside.

17 Replies

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  • I will start my radiation treatments next week and it will be for 8 weeks of low dosage radiation. I have a couple of close friends who had this done at low dosage and told me there was no side effects. but I know for each individual it can be different but at least I have testimonial from them and that can be comforting going into it. I think fear is natural but talking to Pcancer survivors helps our way of thinking realize we can fight it. Because I am still new being diagnosed in May,2017. I haven't heard of proton therapy but I am glad to hear about new protocols. I recently read one protocol for Pcancer with immunotherapy, where they take our white cells from our body and stimulating our own immune system to work harder. still in trials but I feel if I can survive for another 5 years the immunotherapy will be one of the ways to attack from a different angle because we have fight it more the one angle, like the Stampede trail for Pcancer is using more then one direction of stopping the cancer.

    God Bless

    Robert

  • Thanks for responding Robert.

    I was diagnosed a week ago but I have been researching extensively about a month ago when I got my PSA results back. My Urologist has tracking my PSA for the last three years. Anyway from what I understand the treatment choices are all based on how advanced the disease is. If you are considering immunotherapy then I am guessing your disease is in the more advanced stage. God bless you my friend, Sometimes I think this ordeal that I am going through is a reminder from God that this place is not our permanent home, but I hear you we all want to stick around for as long as we can to do things we haven't done yet. I.E Be with Grand Kids, Family, Freinds etc.

    Take care of yourself and may Gods peace and comfort be with us.

  • Thank you Steveo3312

    for your reply, at this time I don't have advanced prostate cancer but I am keeping positive about the immunotherapy for Pcancer survivors. my cancer is only on the prostate at this time and I have change my lifestyle to keep it there but sometimes we never know what is next for us so all the new protocols keeps my mind positive and helps dealing with stress. stress is probably one of the situation that can make the cancer stronger. you are right this is not our permanent home but to be here for our family as long as we can is what we first think about when dealing with Pcancer. I have met a few men in their 80's who have Pcancer or it came back, talking to them at the doctor's office. one was getting Hormone therapy, I guess at that age when it comes back H.therapy is used and from one patience told me he has been on it for 9 yrs. they have use a couple of different H. therapys. I say learn as much as you can about our disease because we can't always count on the doctors to have some of the answers that we would like to have answered probably talking to another Pcancer patient gives us a closer insight to it right here on HealthUnlocked, I am still new but I am glad to have talked to the PCsurvivors here , it really brought down my stress to know and learn about all the different protocols. I am 67 years old I would love to live to be in my 80's so I pray to Jesus for healing and trying to do all the right things in his eyes and one day I will see him and my parents again when its my time to pass.

    God Bless and Amen to all of us here that are looking for answers. I am blessed to have found HealthUnlocked for my own comfort and direction.

    Robert

  • Many if not most of us start on hormone therapy so don't think of it as a backup for guys who may have a recurrence of their PCA in later years. In Nov 2014 I was diagnosed Incurable metastatic PCa with some 40 bone Mets plus all my pelvic girdle lymphs wiped out. Add my 2 seminal vesicles full of Ca so my body was a mess. Front line therapy was ADT. Even now I am still on it, latest implant yesterday. In between 8 months chemo,. also now Zytiga. PSA down from 200 to 0.03 monthly over 15 months. Feel great. If you are offered ADT look closely before rejecting. God bless.

  • hi scruffybut 1,

    will you explane ADT?

    thankx

  • I was diagnosed with a psa of 1185 was put on hormone therapy and my psa dropped to 7 in three months then down to 0.01 and has staid like that for 9 years .came off all treatment two years ago and my present psa is 0.02

  • Robert keep me updated on your immunotherapy treatment. From what I read prostate cancer can be tough to control or cure with immunotherapy but again I only know what I read on the net which in some cases that is not 100 percent accurate. Things are progressing quickly in this field and hopefully its just of matter of time before they get the right fix. My daughter is a researcher in Cincinnati focus on immunotherapy, protein research. She said the trend in cancer treatment is going towards more personalized medicince because each patient is different. If They can determine our genetic profile then maybe then can create a cancer killing cocktail specifically for us. Anyway I was just checking my googe alerts and noticed this thread.

    msn.com/en-ie/news/video/ca...

  • Sorry,

    I just looked at your post again. You are not getting the immunotherapy yet.

    Just radiation. If you cancer is localized then you can considered Proton, alot of benefits over standard radiation, If you don't want Proton then the Henry Ford cancer center just opened this year the worlds first MRI guided radiation treatment. Anyway best of luck to whatever you choose.

  • I am doing the radiation next week and they have me set up with the golden beads and mat. I am always looking ahead for other protocols in case the radiation and Htherapy doesn't work in a long duration. HT is working right now and doing the Radtherapy should make the Pcancer die alot quicker but I have to realize that it can come back and to look at other options if this happens instead of getting depress about it.Thank you for your response and I am glad your daughter is a researcher in immunotherapy . I do believe that will be our future protocols.

    God Bless

    Robert

  • Thats great to hear, I read on the internet news about it and more keeps coming out. I think they will perfect it and hopefully soon. please keep me informed what your daughter finds out.

    thank you Steveo3312

  • As a resident of Sydney, Australia, I was accepted at Loma Linda in Ca in Dec 2012 for 39 radiation sessions using their Proton Beam system. Cost about $100K including accommodation. I decided that I could get a cheaper solution. I finally spent 11 weeks in Seoul, South Korea at their National Cancer Centre, claimed to be the best cancer treatment centre in the world. I got a great outcome at a cost of $60K.

    When I returned from Korea, I decided that my knowledge on Prostate Cancer was still sadly lacking and I started serious research on PCa. This finally culminated in me writing two best-selling books on PCa. They were designed to assist newly diagnosed men who needed a comprehensive review of the treatment choices available and the questions to ask of their medical teams. (put my name into Amazon to find out more or visit my web site).

    I continue to research the subject and am a regular speaker at support groups in the Sydney area. I also do a bi-monthly free Newsletter called ProstateTalk. Whilst I spent 46 years working in science and medical technology, I am NOT a doctor.

  • Thanks Alan I will check it out now. Thanks for all you do.

    BTW are you still alive?

    legacy.com/obituaries/name/...

  • I’d look into Focal Laser Ablation. (FLA). If your biggest worry is side effects, this therapy has virtually zero. I had a Gleason 4+4 lesion ablated over three years ago & there is still no sign of it. It’s a newer procedure so you’ll have to cough up around $20,000 in Texas, $16,000 in Chicago & $30,000 in New York. UTMB Medical Branch in Texas. Dr. Eric Walser. Dr. Eggener at the University of Chicago & Dr. Sperling in New York. Walk in in the morning with cancer & walk out the same day cancer free. It’s a small laser they insert during a running MRI. They place the laser fiber directly into the lesion & heat it up. That’s all. They most likely will not accept you if you have several lesions all over your prostate but 1-2 lesions they can get no problem. Also note that this is Focal therapy for a multi Focal disease. All I can say is that I’m happy I chose this route. Google it & look for inspire.com/FLA.

    let me know if I can be of any further assistance. I’ve spoken to many men on the phone that had a lot of questions. I’m happy to help if you’re interested. Good luck to you all.

    Ray

  • Thanks Raymo. Right now I have been diagonosed as a t1c gleeson 6 but a small suspicious spot came up on my rib cage. I am having a biopsy this Tuesday at Mayo to rule out cancer, so I am just trying to take it one step at a time.

  • By the way, I was only 45 years old when I had that cancer ablated. Two years later another lesion popped up on the opposite side & got thst treated also with the same therapy. This isn’t for everyone but it’s the only treatment I was comfortable with. I live outside of Chicago too. I went to the Proton Center in Warrenville. Spoke with them for two hours. They would only give results from patients two years back. It appears (through a lot of research from the guys at inspire.com) that the initial lack of side effects start to appear a few years down the road. This is probably why they were a little vague when they were being questioned.

  • My apologies. I see you have a different post stating that. I already commented on your last post! Confusing sometimes!

  • no worries