Recurrence after HIFU AND after HD Bracy (after 5 yrs)

Hi Guys. I have been reading many of your comments and can't seem to find the information
concerning my husbands' recurrence of PC. He had HIFU when it first came out but PSA
kept rising again after one year. Anyway, MRI and biopsy confirmed it had returned to the prostate
bed. This time around he opted for HDR (high dose bracytherpy) and it too did not have too
much in the way of SE - except frequent urination. BUT it has been five years, and it is back! Rising
for months and already doubled the nadir. PSMA (ply) confirmed PC in bed and a tiny suppecious
something on one lymph node. Please, can anyone give ideas in how to proceed. It seems
after HIFU and HDR surgery is out of question. His urologist does not think he can "take any more
radiation", so what to do. Thanks so much I do appreciate this forum.

Mumbo, thanks for your reply. And yes, we are in USA. Anyway, my understanding is that if you ask
an radiologist they will recommend some sort of radiology, if you ask a cryotherapy provider, they will
recommend cryo, get it. The uroligist, I should mention is a HIFU provider (he did the HIFU). But
he has pc patients all the time and sees what has happened to them with the different treatment options.
In fact, though he is a HIFU provider, he would not recommend another HIFU (honest doctor) as his
experience has shown HDR can weaken the rectal wall and HIFU would then be very risky. Also, the surrounding
organs can only take so much radiation without triggering cancer! So that is the dilemma; I totally agree
on your statement about not wanting meds for the rest of your life (with a zillon side effects and untold damage
to the rest of your body - I might add. So yes, cryo might be worth looking into - but can it be done after the 2 other treatments, and can it damage the urethra.. so difficult to know what to do.

JBlue, I would reiterate getting to a "center of excellence", particularly one that takes a team approach to treatments of this type. You didn't share where you are located, or where you've been for treatment. One of the 'big name' centers is where you need to be--MDA, Duke, Mayo, Cleveland Clinic, etc. Most of them will put multiple experts together to look at his situation to find a solution.

Thanks Mumbo and Halbert. He will be getting biopsy soon on the prostate gland itself. But
need to know what to do as PSA rising every time. Afraid it will get out and spread! HDR
is very good when it works - and does less damage to surrounding organs - but it is unavoidable to
totally prevent bladder for instance to get a little rad. As for cancer centers - do you like The JAMES?
We are in OH so that is the closest or Cleveland Clinic. As one of your members said, you go to
a surgeon, they want to do surgery, radiologist and they want to do radiation of some kind. Not necessarily have you best interest in mind. In fact a while back, a doctor told my husband - 'it is a business" they are all
looking to make money period. Sad but true - so you have to be your best advocate. That is why I am on
here. I know you guys have been there, done that and of course you can learn from my husbands' experience as well. Thanks again - greatly appreciate your input. We are losing a lot of sleep these days.

JBlue - My suggestion is to contact Cleveland Clinic tomorrow, explain your husband’s situation, and try to get a visit where you see a team or multiple doctors on the same day. CC has some rock stars in cancer so their opinions would be worth having. Then schedule a similar visit with The James Cancer Hospital at the OSU. The first appointment becomes the diagnosis and the next is the second opinion. They will acquire all his medical records and review before the visit.

My wife has/had a cancer recurrence and she booked two appointments, one at Mayo and one at Univ. of MN. They both recommended the same treatment scheme so she chose the much closer university location and it has gone very well. I had to push my wife a bit to not think linearly but to get the best opinions as soon as possible.

Primary treatment is one thing, recurrences are more serious as you don’t get a lot of do-overs so more important to be sure on next steps. Yes, you have to be his advocate if he does not want to do it and to make sure you did all you could to get the best and most appropriate treatment scheme possible for him. Someone has to do it.

hrp…Even as a low risk uncomplicated case (Gleason 6) I had a team experience at CCI. My RO and a fifth year intern both did thorough work ups and interviews. Even though I had ruled out surgery; they encouraged and offered the services of a surgical urologist to sit in. I did use their urologist to place my markers. I can’t recall just how many team members I met with during my evaluation; but, it was a thorough and team experience. My wife and I were both so impressed with our experience that we changed our insurance from BCBS to one where CCI was in network.

JBlue, good start with the James Center. Hopefully they will provide you with excellent treatment. May I ask what was the original diagnoses regarding the number of positive cores, Gleason and PSA? Also, what was his nadir PSA? What is his age? Still working? On Medicare? This information will help us understand his situation.

I also had HDR-BT nearly 14 years ago and it has worked well. I also had external beam radiation and ADT due to my high risk diagnoses. It appears to me that he had some cancer just outside the prostate that the HDR-BT couldn’t reach. The addition of external beam might have been successful, as it was for me. It may also be possible that he can still be eligible for additional radiation to the area and lymph node. That is why you need a top-flite radiation oncologist with a lot of experience with prostate cancer. The really goods ones can make a real difference.

Best wishes.

Thanks Mumbo. I was just wondering why this doctor needed a MRI since the PSMA-CT scan
showed clear results - the other urologist did the last biopsy without MRI and it was negative!
But this is a year later, with new PSMA-CT results - still showing positive in the gland bed but
now also a 3 mm proximal left external iliac lymph node which radiologist claims demonstrates
mild to moderate focal uptake on pet imaging, and it was not seen previously. This is
"suspicious for metastatic node." But this doctor said he wants MRI too in order to do biopsy.
And yes, you are right this is a unique case in that he had 2 therapies already and it came back
after both of them. But we all know cancer is very stubborn and sometimes refuses to go away.
The problem of course is that prostate gland has been assaulted by these past treatments and
so, concern for urethra and any additional radiation to bladder and rectal wall. It seems to me all
choices are with risks - so trying to decide the one with the least. Also - why doctors all pushing ADT when it
damages the heart, bones, and newest research says can facilitate dementia/Alzheimer's!

There is a reason MRI’s are done on a prostate, they provide better imaging. The doctor probably wants to be sure and may be planning to do a MRI guided biopsy which is pretty standard practice nowadays.

You will not get any argument about ADT risks and side effects from anyone here, it is far from a perfect treatment but science has not come up with anything more effective yet. What you hope for is not a lifetime of being on ADT if required.

Don’t get ahead of yourself worrying about all the stuff that has not happened. At some point you have to let the doctors do what they do and come to some conclusions. Every treatment has risk as well as doing nothing.

JBlue, HDR-BT and HIFU are both focal treatments specific to the prostate area. HDR-BT, properly done, will extend 5-10mm outside the prostate to cover the margins that surgery can not reach. But, if at the time of his treatments, some cancer cells had already left the prostate, neither of these treatments, or surgery, would have reached those cells. These cells would not have been detected by any kind of scan as they would have still been microscopic. The two most usual ways these cells travel are through the lymphatic system and the blood stream. Blood borne cells go most often to the bone and cells travel by the lymphatic system to the lymph nodes. That he has a very suspect lymph node tells me that some of his cancer was already out of the prostate before he was treated. He would have had to use external beam radiation to reach those areas. I had several suspect lymph nodes so I had 25 IMRT sessions that radiated the pelvic lymph nodes and it has worked wonderfully for some 14 years now.

That there may still be some cancer in the prostate bed tells me that his treatments may not have been effectively performed. First HIFU just has shown terrible results at cancer control. That is why it still isn’t FDA approved for initial treatment and is just not often used compared to surgery and radiotherapy. Second, I would review the method, dose and coverage of the HDR-BT that was performed. If the treatment was too conservative in either dose or coverage area, then it might have allowed some cells to survive.

If he actually has cancer outside the prostate area, it must be identified and treated. Often, it can be radiated and controlled. But more often it has to be treated with drugs if it can’t be radiated or if it is suspected to be more widespread. His original Gleason score will be used to consider this. There are many drugs that control and/or block the testosterone that feeds the cancer. This method of starvation can be very effective in managing the disease once it is outside the prostate. Generally this treatment is called ADT, which is androgen deprivation therapy. For more advanced cases traditional chemotherapy and immunotherapy can be used. Due to my high risk diagnosis I had several months of ADT added to my treatment.

As far as cryotherapy goes, it is focal to the prostate and very tough on the ureter. So urinary problems are very common and cryotherapy has not proven to be very effective at cancer control. These are reasons that the vast majority use radiotherapy and surgery. It certainly can’t be used for the lymph node and may not be effective with the suspected cancer still in the prostate bed particularly if it is at the edges or margins of the prostate.

It is common to want to say “let’s try this, or let’s try that”. But the better method is what your doctors should be doing and that it to determine where the cancer is and apply the well proven methods to kill and manage the the cancer so that it doesn’t continue to grow and spread. This is process driven and at this point may include radiation oncology (using various forms of radiation) and perhaps medical oncology (using various drugs). It is a process and must be followed in a way that is proven to be effective. Be patient, but very diligent. That you have the process started is very positive. Learn about the process and methods and allow the specialists to do their work.

I’m still interested in his initial diagnosis. That he used HIFU and then HDR-BT mono-therapy tells me he was either low risk G6, or intermediate risk G7, with relatively low PSA and only a few positive cores in the biopsy.

For my treatment we used a combination of HDR-BT and IMRT. This is actually a very common combination that many men on this forum have successfully used. HDR-BT is very effective at delivering the killing radiation to the prostate and is enhanced by the low and slow radiation from the IMRT. For example about half my radiation dose was delivered in two 15 minute sessions of HDR-BT and the other half was delivered in 25 IMRT sessions over about seven weeks. Each session was once a day for about 15 minutes. As I was very high risk and had suspicious lymph nodes the IMRT was expanded out to include treating the pelvic lymph nodes that the HDR-BT couldn’t reach.

JBlue - women go on hormone therapy as well for BCa… maybe they deal with it better?

No one “gets” ADT but it works on prostate cancer. You are preaching to the choir here about wishing for successful treatments and no need for long term ADT. The reality is a significant number of men (and women) fail primary treatment and are presented with recurrences that are no longer in the treatment area.

Someday in the future, we will look at ADT as some form of cruel and unusual treatment for men with terrible side effects. Until that day, ADT and its derivatives will be used to control PCa when no longer local or isolated for treatment. There are some real promising things being done currently that may provide better options in the future. If we could only cure cancer?

JBlue,

Cure is always a desirable goal, absolutely. Unfortunately, at this stage of medical knowledge and treatments, cure is an elusive thing. For men with recurrences of PCa, the medical situation turns into management and treatment of a chronic condition. This is an unfortunate thing, but that management can maintain decent health and good quality of life for many years.

Nobody wants ADT, nobody enjoys it. Let's get that over with. But, sometimes it is necessary, and the alternatives are worse. My dad had PCa, diagnosed around 1992 or so. He went for whole-gland cryotherapy, which was in it's infancy at the time. From all indications, he was cured--until he wasn't. He went on ADT, and this was before Lupron. He actually went every 4 weeks for a synthetic Estrogen shot. I watched his mental focus deteriorate. He died in 2004.

What a difference 20+ years makes. Today's treatments are so much better, provide so much better outcomes. At a certain point we have to let the specialists figure out a course of action for ourselves, or for those we love, and let it go. I'd also suggest to you, to get off of "Dr. Google". Seriously. Your husband has a challenging treatment history, and his history is going to create challenges for the current doctors. Please let them do their thing, and don't second-guess them every time. You'll be dismissed as a PITA and eventually ignored.

I hear your concern and your anxiety. Ultimately, however, the treatment(s) choices are up to him, in consultation with the medical pros. This might be the most challenging cancer lesson of all. The treatment that a particular patient chooses are the right ones for him (or her). At the end of the day, we, the caretakers and observers, have to let it go.

Halbert,
Sorry about your Dad, but I think you are a bit confused. The fact that a man's PC is confined to the gland makes it curable. Rmember HIFU unfortunately does have recurrences more than we would like to see, And it is a matter of the skill of any specialist who performs the treatment. His was pretty new at it! The HDR lasted 5 years -so it did work for a time. It is when PC cancer has metastased than it may remain chronic, although, even then, there are new targeted therapies that do in fact cure it. ADT merely slow down the spread. So, you are very behind the times on the newest treatment options. As for your sarcastic "Dr Google" that is one of the great things about the internet and google, you can search and get information from EXPERTS in the field - PHDs who have done extensive research and medical professionals who have done trials. NIH has done a great job in its research on the latest treatment for PC and other diseases. So no, he has no intention of simply relying on a doctor's opinion, many who do not stay current on the treatment options. My husband and I are working as a team to get as much informed as we can -he has expressed how he greatly appreciates all the information I share with him (as it is time consuming) as he has limited time to do the research at the moment. We are best friends, and he would do the same for me.