Hello again! I know I’m been posting a lot a lot here but I promise this is my last post for a while. We now know more:
My father (G-9 recurrent) is ”oligometastic” (realising that this a controversial term) with two small (5 mm or smaller) bone mets located in right iliac bone and left lower ramus.
As some of you already know the doc in Finland suggests only radiation to prostate bed + mets for 7 weeks. MDT.
My head is spinning from everything I’ve been reading regarding early chemo, ADT etc etc.
I managed to get my father a second opition on the phone from a professor at Martini Clinic in Hamburg the 26th of June.
But is that to late?
I think my head is going to explode soon from trying to be of both emotional and medical support to my father so I am very thankful for your thoughts.
If someone would have told me the future in February I would have been chocked ”you are going to spend every night reading about cancer and research and also posting a lot of questions to a board of other men with PC that will help you more then your friends ever could, the rest of the time will be filled with work and a French spy tv series, but mostly tou will be occupied with googling cancer 90 procent of your awaken time”.
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"the head-spinning" experience you describe was my own experience when I found out one year ago that I have Prostate cancer with bone mets. First one month was horrible for me and my family as we thought I will be dying soon ..in a few months or a year. This was because of lack of knowledge about prostate cancer and also, because of outdated, data on internet.
As I got more knowledge from medical textbooks, pubmed database (US Govt.) of studies,
Getting familiar with explosion of more understanding and more treatment methods, my fear started to subside and now, fear is almost gone. This forum accelerated my learning and stimulated a lot of thoughts. So I am grateful to people here who provided me initial
support and stimulation. I was reading just like you ...day and night..sometimes all night to
figure it out.
In a year, I finished reading over a thousand research papers and countless other articles and videos etc. Yes, it can be confusing and overwhelming in the first 6 to 8 months but it certainly gets better. Knowledge is power ! Knowledge liberates ! Therefore I chose my name as "LearnAll" Wish you and Dad all the best. You seem a very caring and loving daughter and your Dad is lucky to have a daughter like you.
Note: Oligo Mets or no Oligo mets...His PSA ad Alkaline phosphatase has to be monitored frequently to see what is happening. ALP is a good biomarker to track bone mets.
Tracking bio-markers such as PSA, ALP, Albumin, Hb, Calcium level, NL ratio, PL ratio etc. ,scans etc. can protect him from overtreatment as well as undertreatment because you can see real status of cancer inside.
"He has a RP in 2017/2018 including removal of 10 lymf modes, after that his PSA has been 0 until this May that it went up to 0.24-0.26 (been shifting a little but constant for at least 10 days).
Last check up was november 2019, then the PSA were 0."
How many of the 10 lymph nodes removed had cancer? None? Now two small bone mets were detected.
"the doc in Finland suggests only radiation to prostate bed + mets for 7 weeks. MDT."
Did he mention if he wants to radiate the bone mets or extend the radiation of the prostate to the pelvis? Usually bone mets are radiated when they cause pain. Often you add hormone therapy for up to two or three years to the radiation. If your father has bone mets, I am sure the doctor will recommend that.
Of cause you can wait till the 26th of June, the radiation will not start before that. I would recommend that you do the radiation and start with ADT and then decide regarding additional treatment after that.
Now 2 very small bone mets close to the e-prostate bed.
Different doctors suggested different things. My father’s current doc only want to radiarion. This was his reply regarding adding meds:
”The PSA was 0.23 in one laboratory and 0.20 in our laboratory. Unfortunately there is a small inaccuracy between the methods from one laboratory to another, and oin this case we will take it easy and repeat the PSA test after a few weeks of radiation. As said earlier I don't think we'd need a hormonal medication - LHRH agonist or antagonist or bicalutamide at this stage. One reason is naturally the fact that we most likely don't need it but also the fact that hormonal medication has effects on general health and wellbeing. A prolonged use increases the incidence of cardiac problems and such, and our current understanding is that hormonal treatment should be kept as short as possible. I suggest we would measure PSA after 4 weeks of radiation and if it has not decreased markedly, we can start a six-month treatment of e.g. degarelix (Firmagon). Usually we combine LHRH agonist/antagonist with bicalutamide in treatment, usually so that the injections (LHRH agonist/antagonist) are a continuous treatment and bicalutamide is used 6 months at a time. ”
You are in a situation where there are several valid treatments. Therefore you will get different opinions. You prefer a chemo, but different treatments can be applied as well.
Prof. Steuber is a very good doctor, you can trust his advice. I saw a presentation by him where he presented chemo and Abiraterone as alternatives to treat patients with bone mets.
If I would be in the situation of your father, I would just get the two bone mets radiated with SBRT or Cyberknife and see how far this decreases the PSA value. And then wait until additional treatments become necessary. This just takes about three radiation sessions and no drugs and no side effects. It is currently unknown if the prostate bed or the pelvis need to be radiated - is any cancer there?
Thank you very much for your thought! Very much appreciated! If you want to elaborate just so that I understand more: how come you would not choose a more aggressive combination-treatment? My father’s scan only showed cancer in the bone mets, so I guess the extra radiation is just to be safe?
As your father has a Gleason 9, it would be an exception if the cancer did not spread. Now bone metastases were detected, and a very low PSA value.
In prostate cancer with bone mets you start with hormone therapy and not with a chemo. This has been the treatment during the last decades. Only recently, the CHAARTED study found, that there is a benefit for adding chemo to hormone therapy early. But this benefit was detected for patients with more bone mets than your father. They made an analysis for patients with few bone mets and found that adding chemo did not make a difference.
Therefore the current doc of your father does not recommend chemo. He also does not recommend hormone therapy yet, because almost all existing studies did not detect a benefit for starting with hormone therapy early. Most patients, however, ask their doc to bring down the PSA value and then the doc starts hormone therapy. So starting hormone therapy early is done most of the time.
My opinion is to try to avoid side effects from aggressive treatment and live happily without these instead. Aggressive therapy may not provide any additional benefit in the long run but will cause side effects for your remaining life. This is the reason why I do not choose aggressive treatment.
The standard of care for a rising PSA value after prostate surgery is salvage radiation. Because you usually do not know what causes the rise in the PSA value. the standard is to radiate the prostate bed and, if there is any reason to believe lymph node metastases may be present, to radiate the whole pelvis too. A reason could be the Gleason 9, which makes lymph node mets very likely. However, in the case of your father, it is known that the reason for the rise in PSA value are the two bone mets and during surgery no affected lymph nodes were found. So one could try to avoid the side effects of radiating the prostate bed and the pelvis by just radiating the two bone mets with SBRT as I mentioned. As I said this means three days of radiation instead of six weeks every day, which is the standard.
Thank you so very much for your informative answer! It answered some questions I’ve had for weeks!
A follow-up question:
Some say oligo is ”curable” (my father’s current doc is of this perception) what are your views regarding this? I’m reading so many articles about oligometastatic prostate cancer these days.
I am oligometastatic with lymph node mets. After my diagnosis I thought, if you get your prostate treated and kill the mets with radiation, you will be cured. However, the visible mets are just the tip of the iceberg. Nobody knows how big this iceberg is, but you have to expect smaller, invisible mets to be present, which will grow to a visible size after some time.
After my first SBRT radiation it did not take a year until new mets showed up. I got these radiated and even more new mets showed up after almost a year's time. Got these treated again and this time combined the radiation with a short course of ADT. It will probably take two years until the next treatment becomes necessary, so far my last treatment is 1.5 years ago. I do not suffer from side effects and so I have no problem to carry on with this concept.
I could start with ADT any time and due to the low tumor burden I currently have this will control my tumor for many years. According to a study by Laurent Klotz up to ten years. But I would like to avoid the side effects of ADT for now and rather continue with SBRT or Lu177 radiation.
All these treatments will not cure me and therefore I believe your current doc is too optimistic.
Yes I understand the questions regarding CTC..Have you had a CTC-test? My father’s optimistic doctor answered me this (regarding early aggressive treatment)
”In aggressive i.e. high Gleason score diseases we normally see PSA rise similarly as in less aggressive. The difference shows up in cancers that have an aggressive small cell component, in which PSA is not a reliable marker. As said, I've discussed my approach concerning the hormonal therapy with my colleague prof. Joensuu, and we both agree on the current approach. There is some scientific evidence on it but also it's based on our experiences here at Docrates.
We really try to make the best possible decisions at every step of the treatment to ensure you the best possibilities of getting cured and simultaneously ensuring an excellent quality of life. ”
I did not mean CTC. What I meant was: if your father has two bone mets of 7mm size, he may have also four mets with 5 mm size and five mets with 2 mm size. A bon scan will only detect the two bone mets of 7mm size, a PSMA PET/CT will detect these two mets plus the four of 5 mm size, thus showing six mets. But it will not show the five mets with 2 mm size.
So if you get a bone scan and radiate the two mets, you have nine mets left which will soon grow to a visible size. If you get a PSMA PET/CT and radiate all six visible mets, you still have five mets which will grow to a visible size later.
Therefore in my case I had to repeat the radiations and always new mets appeared after that. These mets were not new, they just grew to a visible size after some time.
Regarding cure: it depends on the definition of cure. Doctors consider a patient cured when there are no further indications that cancer is present. However, often the cancer "returns", as it did several times in my case. The cancer was always there, you just could not detect it. My personal definition is, you are cured when you can be sure that the cancer will not "return". When I apply this definition, I will never be cured.
Also, your doctor does not promise a cure, he just writes of: "possibilities of getting cured".
My doc at Dana Farber Cancer Institute has dared to use the word "cure" for oligometastatic cancer if treated early and aggressively with SBRT and ADT. ADT sucks for sure, but if it gets him closer to cured, then might be worth the hassle.
I see Dr. Sweeney, but don’t think he is taking new patients. Drs. Taplin, Pomerantz, Beltran all have good reputations and use similar playbooks - especially with SBRT and oligomets.
Thank you so very much! Do you know what is considered early treatment? My father’s current doc is refusing ADL, and he has 7 weeks of radiation and is perhaps difficult to transfer during this time and with Covid19..
I don't know what is considered "early" treatment other than to say that with his diagnosis I would want to get started with some kind of treatment sooner than later. "Sooner" as in the next couple months. No need to be overly-anxious with urgency, but since some kind of treatment is necessary, keep working on the plan and getting things scheduled. Start with systemic ADT and schedule radiation to the prostate bed and mets thereafter (??). Starting with the ADT will stop progression and help with the radiation.
I have been meaning to ask you if your dad had adverse pathology after his RP? Or were his margins negative? I know you said his lymph nodes were negative.
Well with positive margins it is assumed some cancer is left inside after the prostatectomy and those patients are more likely to suffer a re-occurrence. I was curious if your dad's pathology showed that.
Bluecat: search the term "oligometastic" on this forum and you will see a ot of helpful posts. Also do the same on TA's blog for links to research on it. Oligometastic PCa is considered curable by some.
You are a very nice caring daughter. Hats off to you!
Have you got a name for the 2nd opinion in Hamburg?
Thanks. Viewed a video with E. Efstathiou, him and two others. You probably have seen it yourself. Seems knowledgeable enough on the subject you raised regarding early chemo, extending it towards combinational therapies. In this respect it's a good fit for your father's case. I am a bit older than your father and have 2 daughters, so very appreciative of your endeavours. Don't forget to keep us posted. Best of luck to both of you.
I suggest he start with a 6-month shot of Lupron now. That will stop the cancer in its tracks and prevent any further progression. It helps radiation work better anyway, if that is what he decides to do. And it is basic to any systemic treatment.
Thank you! I’ve asked the doctor for this now, hope he listens! Another question: before radiation started my father’s PSA dropped to 0.2 from 0,26. Is this common?
Yes- degarelix (Firmagon) is a GnRH antagonist, which means that it doesn't begin with a surge of testosterone, as GnRH agonists do. The downside is that it is only available in monthly injections.
My husband is 61. Gleason 9. Had surgery. PSA still there. Had pet scan to find pelvic lymph nodes with cancer.
I have been researching and reading every article I can find since this all came down in February so I know how you feel.
I trust the advice I'm getting in this group. Luckily prostate cancer grows more slowly when compared to other cancers. I agree with tall Allen, get the lupron and zytiga to slow things down.
We are looking into radiation for my husband. If the pet scan showed bone mets I would say to skip the radiation and go for chemo but that just my opinion. Good luck to you guys and us.
It is so confusing and a very difficult time but you are doing a great job getting up to speed and you have got your dad a second opinion so you have already helped him loads. I am not going to presume to suggest what you do because others on here are much more knowledgeable than me but I wish you both all the best. Make sure you try and get some time for yourself. Coping with the uncertainty is one of the most difficult things on PC but on the other hand the fact that we now have so many choices is probably a good thing in a way, Good luck.
Do your dad a favor, go to youtube and watch the 58min Joe Tippens video. My brother has a stage 4 glioblastoma which in December 2019 was diagnosed and was 20% of his brain. He couldn't talk or walk and was going to the bathroom in his pants. The unshrinkable tumor as of 2 weeks ago has shrunk by 48%. No BS. The dr sent him home to die, and we found this and said - there's no downside - hes dying. I've witnessed a miracle. I researched the heck out of fenbendazole - which used to be used for humans and then they made a new version. It's an antiparisitic. I'm an educated person - and there is literature by John's hoppkins and AJMA. My sence of this is, no one wants a 50 cent a dose cancer treatment. Watch the video, good chance it saves your dads life. Look, I wouldn't have believed it if I didnt witness it. Right now my family is waiting to hear from the top neuro oncologist in the midwest. No one has ever survived a stage 4 glioblastoma. And they dont shrink, especially by 10% a month 5 months in a row. I'm only on here because I've PERSONALLY witnessed a miracle. There are many people who've used fenbendazole in the last 2 years - even a retired pro golfer who swears by it. Everyone who reads this should investigate what I'm saying, because I haven't overblown 1 single thing. My brother had every single end of life symptom in early January. Today, he ate good meals, watched tv, and had conversations like normal. This works on bone, lung(especially small cell), pancreatic, throat and brain cancers. In the literature by John's hopkins, at the end of their study, they make the comment "the mechanism by which this works isn't understood". Mind you, they were testing mice, who they gave different cancers to. But I've seen what this drug can do first hand. And the only side effect is, 5% of people get diarrhea. Hope this helps somone
Is he taking vitamin d,e,a,k and curcumin along with CBD? That sucks to hear. This has been the only thing to work for us. If you read the studies, it seems the vitamins enhance the effect. I'd also take chemo if they offer it. It seems the fenbendazole and chemo work in concert to kill cancer cells. My brothers tumor was huge and it's half in 5 months. I'll pray for your husband. If there was somthing else I could do, i would. I've read every piece of literature I could find on this
He was on the entire protocol until recently and it’s difficult to know when one is on other treatments. I had not read of definitive success for prostate cancer but it seems to have done no harm to him.
Yeah, it won't hurt. And if you really dig into the research, it's mostly on lab mice. But it's amazing. The quote I remember is, "the mechanism by which this happened(works) remains unknown". The lab mice, given different cancers, in the fenbendazole plus vitamin supplement group's life span just about doubled
The fenbendazole works in 3 ways. 1) it promotes the generation of p53( gene all healthy people have in abundance that fights cancer) 2) inhibits the cells ability to process sugar. 3) crushes the microtubules. Which bisect the cell and pass on corrupted genetic information to nearby cells. Chemo, plus fenbendazole seems to really pack a punch. Everyone's body is different remember. Some will have greater success than others. And also remember in that family of antiparisitic's there is menbendazoil, and albendroziol along with one other I forget the name to. So when one isn't sucessful, try another. Why not. The other two are prescription only. Your dr can give it. And then after 30/45/60 days you keep checking the bloodwork. That's what I'd do
In some people fenbendazole causes dramatic improvement but not in everybody.
The mechanism of action of fenben is that it damages Microtubules in the mitochondria of cancer cells and that leads to death of cancer cells (apoptosis).
In an otherwise healthy person..the risk of side effects from fenben is very little. One has to use his own judgement whether to try fenben..worst case..it just may not work.
No, and I wouldn't tell your doc until you know the positive results are related. Today, fenbendazole, is used for animals. You can buy Pancure C, which is fenbendazole, online. It's used for animal's today, although it used it be used for people. It's an antiparisitic. Look, you can read info online from John's Hopkins and AJMA. There are studies. If I had cancer, I'd 100% try this
Supply the exact dates and PSA values and _maybe_ some numbers crunching be of value. I am an engineer and give more credit to numbers than experts' opinions.
A search for a PSA trend that will have some meaning requests more data. The 3 values that you quoted are just not adequate. One year's worth and 6 or more PSA values may shed some more light.
I don't know if you can find my post through "search" but if you can look for "Radioligand therapy". It's not cheap but I went from a PSA of 980 to 0.41 and I'm in complete remission in 3 months. There is only 5 hospitals in the world that offer this treatment. I picked Bangkok and stayed for 3 treatments (one each month).
Post all you want.... we think you're cute.... and a wonderful daughter. Listen to the guys (and gals) here, they know a lot about Pca. Stay well give my regards to your father and remember the spy is always the butler.....
Thank you so Very much! My father’s doctor answered this:
”The PSA was 0.23 in one laboratory and 0.20 in our laboratory. Unfortunately there is a small inaccuracy between the methods from one laboratory to another, and oin this case we will take it easy and repeat the PSA test after a few weeks of radiation. As said earlier I don't think we'd need a hormonal medication - LHRH agonist or antagonist or bicalutamide at this stage. One reason is naturally the fact that we most likely don't need it but also the fact that hormonal medication has effects on general health and wellbeing. A prolonged use increases the incidence of cardiac problems and such, and our current understanding is that hormonal treatment should be kept as short as possible. I suggest we would measure PSA after 4 weeks of radiation and if it has not decreased markedly, we can start a six-month treatment of e.g. degarelix (Firmagon). Usually we combine LHRH agonist/antagonist with bicalutamide in treatment, usually so that the injections (LHRH agonist/antagonist) are a continuous treatment and bicalutamide is used 6 months at a time. ”
Both are equally good. Beckman coulter just measures it differently to give a higher reading.
I prefer Siemens test and always do this one so the comparing is easy.
Hello caring daughter,
You are probably getting your father's second opinion, as I write this.
Just a quick note to send both of you my best wishes for acquiring information that will make your future treatment decision easier and will increase confidence in it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ADT vacation with bone mets?
Is ADT vacation safe? 
Hello, dear people!
I am going insane with life expectancy. I wish it was easy as a prayer, smile, and balloon. 
