SBRT Radiation Treatment-Seeking information/experiences

I have not been active on this form recently and have had to update my signature info since my last visit. I have been pursuing SBRT treatment and have had to overcome many hurdles to date. Some of these including becoming familiar with the health insurance system and the "run around" they give you as well as trying to sift through the opinions of different doctors in consultation visits. Since there are no Radiation Oncologists here where I live that do SBRT, I have had to look at traveling to the West Coast (I live in Hawaii) for treatment. I have settled on Dr Chris King and after getting all the right "codes" from my health insurance carrier, finally got their approval. I have also been in contact with Dr King and he has agreed to perform (or oversee?) the SBRT treatment at UCLA. The next hurdle I have is arranging all the travel details. Can other members here share some of their experiences or knowledge on the treatment process and if I will need a caregiver with me 24/7 in case there are any complications or side effects? I read some posts which mention needing someone to drive you home (or in my case back to the hotel) after implanting the fiducials. I have also heard how some have experienced trouble urinating and/or diarrhea after (or during?) the treatment. Any information you can share would be greatly appreciated.

Hi, Pax - I like your screen name. ;-)

I had SBRT in the Chicago area, finishing just before Thanksgiving last year, so most of the memories are fresh in mind. I'll try to answer your questions from my own experience, although Dr. King's protocol may be slightly different.

The only reason you would need someone to drive you "home" after your fiducial implant is if you took any tranquilizers or were sedated in any way. I'm not aware of how Dr. King handles this procedure, but Dr. Hirsch (my RO) gave me Xanax and Hydrocodone for anxiety and pain, so I did have my wife drive home. Well, really not home, as we went right back about our daily routine, out for dinner, etc. I'll admit that the implant procedure was not comfortable, but the pain only lasted as long as the procedure - about 15 minutes. I describe it as 15 minutes of me cracking bad jokes while breathing through gritted teeth. Uncomfortable, but over quickly with no after-effects.

As for the treatments themselves, please put your mind at ease! I had mine starting at 8:30 AM. With the LINAC my RO has, the treatments were about 1 hour long - 45 minutes "on the table" and the rest administrative stuff, drink water, empty bladder, etc. I described my treatments as being quite pleasant - I got to lay down on a narrow bed, covered with a warmed blanket, to listen to good music on a pretty good sound system while the machine moved around and stared at me from all sorts of strange angles. Most times I slept through part (or most) of the treatment. After the treatments, I went right to work and completed my normal work day, then went to the gym for my usual daily workout routine. I did feel a bit "washed out" but had plenty of energy to do normal daily routine. I really doubt that you will need a caregiver at all during or after SBRT radiation treatment. You may want company, but you won't need help taking care of yourself unless you need it now.

During the 10-day duration of my treatment, I really didn't note any side effects. Shortly after the end of treatment, I did notice some urinary hesitancy and weak stream, with slight discomfort. 6 weeks of Flomax (1 capsule at night) took care of that. No urinary issues now .

A few weeks after treatment, I did note some digestive and bowel issues. Let me state up front, though, that I was at higher than normal risk for these effects, as I have had IBS for many years prior to treatment. We discussed this with my RO, and I was willing to take the chance. I had already had open-heart surgery and a couple of other surgeries, so I wanted to avoid yet another major operation. The worst of my digestive issues was "moving" intestinal cramps. Think of having stomach cramps that randomly start and stop, sometimes within minutes, and randomly move around to various parts of your intestinal system. They would vary in intensity, a couple of times getting bad enough to wake me at night. Fortunately I had medication from my gastro doc, and the meds quelled the pain post haste. I am not at all sure that these pains were caused by my radiation treatment, as I've not heard of anyone else having that issue. Probably more specific to aggravating my pre-existing problem.

The only intestinal "issue" I still have is occasional bowel urgency. The pains are pretty much a thing of the past, but occasionally I find that I "must find bathroom - now." Again, for me, this is not really a new situation, but is an escalation of a prior issue, so you probably won't have the same degree of issue I do. Even as it is, this in no way affects my life or my quality of life.

From what I read in your signature, I think you've made a great choice in SBRT, and I have heard great things about Dr. King. Keep us posted. The more of us who write about our SBRT experiences, the more others can learn and decide if this mode of treatment is right for them.

Pax, I just underwent the SBRT treatment at Dr. King's office. I didn't have the need for any help during treatment, I had some major bowle issues one week after the last radiation. That lasted only for a couple of days.

My daily routine looked like this:
Wake up early in the morning to do a 3.5 mi walk.
Shower and drive to work (90 minutes in the car to get cross town to Santa Monica, Yeah Los Angeles!).
Work until 12noon, then go out for another 2 mile walk (I have a sitting job).
Work till 3PM, do my prep: empty bowel and bladder, drink two cups of water.
Make my way to the clinic, get radiation treatment at 4PM, return to work until 7PM after which I drove back home.
I won't say that it wasn't a full schedule, but it was very doable. The stuff at Dr. King's office is fantastic, they treat you like family. I didn't have the need for someone accompanying me. Of course if you need mental support, it's nice to have a family member or friend around.

PAX-

He was my RO as well. You're in good hands.

The treatment itself is a big nothing. You lie down on a bench and 5 minutes later it's done. I went to the gym and worked everyday. You don't need any help or care.

There is a lower cost hotel nearby that you can stay at - ask Dr King's assistant for details.

I guess you will get the fiducials placed in Hawaii? Where will you have the CT and MRI scans done, which they need to do the plan?

Here are the after-care directions I give patients about to have any kind of radiation:

What to expect after prostate radiation

Urinary, rectal and sexual side effects of treatment are usually mild and transient, although they may be worse if you are especially sensitive to radiation, are an older man, or had symptoms before you started radiation therapy. Some side effects described below may occur in many men starting anytime from a week to a month after treatment and continuing for weeks or months. The duration and intensity vary greatly between men.

If any of those symptoms interfere with your day-to-day living, call your doctor. He may be able to prescribe medication that can help alleviate those symptoms.


Urinary

Total incontinence is uncommon. There may be some leakage or dribbling. Other common side effects are irritation, burning or bleeding while urinating, feeling like you have to urinate immediately even when you know your bladder isn’t full, having to wake up several times during the night to urinate, or having to urinate frequently during the day. You may pass small amounts of blood or blood clots; however, if you are bleeding copiously when you urinate, contact your doctor immediately.

A rare but potentially serious side effect is urinary retention. If you find that you can’t urinate even though your bladder feels full, go to the Emergency Room of the nearest hospital immediately and tell them you are suffering from urinary retention. They must catheterize you to allow the urine to flow out.


Rectal

There may be a feeling like you have to pass a stool but you cannot, and this feeling may recur often. This is called tenesmus. You should be aware that that feeling is from inflammation in your rectum (proctitis), not from actual stool there, and if you strain, you may create hemorrhoids. You may have frequent bowel movements. There may be blood in your stools or blood may drip out. Hemorrhoids may occur. Sometimes stool may leak out, especially when you are passing gas. Stool may be loose, or it may be especially hard.

If you have diarrhea for more than a few days, call your doctor. If the bleeding is copious, call your doctor.


Sexual

Semen will usually dry up soon after treatment, although there may be small amounts of fluid. Occasionally, you may see some blood in that fluid or a few drops of blood may drip out after orgasm.

You may notice that, over time, erections are not as hard or as long-lasting. To protect the blood vessels supplying your penis with blood, your doctor may have prescribed Viagra or a similar medication. You should continue to take that medication for at least 6 months after the end of treatment, even though it seems like you don’t need it.

Testosterone levels often drop following radiation, but may eventually return to normal levels. Because of this, you may notice a drop in the level of your sexual desire/libido. Some men experience difficulty reaching orgasm.

If any of the symptoms are bothersome, you may want to consult with a doctor who specializes in Sexual Medicine.

Thanks Allen and Terry for the info you've shared. To answer Allen's about the fiducials, when I spoke with Dr King's nurse, he said what they would try to do is to get me an appointment in the morning on a Mon plant the fiducials there (at UCLA), then wait for 3 days (I'm guessing for the area where they inserted the fiducials to heal), then start the SBRT treatment on a Thursday, again on Fri and then I would take a break on the weekend and start up again on Mon. Does this sound like the schedule you received?...any concerns? The reason why I'm doing the fiducial placement at UCLA was I wasn't really comfortable with the services available in Hawaii and I felt that it might be better if the UCLA folks did it since they are the ones that are going to do the procedure. Also, it was noted that the time between when the fiducials are placed and the start of treatment, will be the time Dr King needs to plan out the procedure.

PAX
The reason to wait a few days after placement of the fiducials is to be sure they are 'set' in place since they can move a couple mm immediately after placement. Following fiduciary placement you'll have a simulation appointment where they do the CT imaging, possibly tattoo's (tiny dots), and make a body form (bean bag) to fit your supine shape. They also inject an iodine fluid in your penis that will precisely identify your urethra on the CT scan and in CCF protocol insert a endorectal baloon to better outline your rectum. The Radiation team takes all of this imaging information to develop the actual treatment plan and actual radiation treatment begins following planning. Good luck.

Again, thanks for all the responses...the info you guys provide is invaluable as these are things no one has ever told me and are very important to consider.

I will discuss the possibility of getting the implants done locally and the every-other-day SBRT treatments with Dr King, especially with the lower possibility of side effects. The two Radiation Oncologists I spoke with here were mainly pushing Brachy, but I think one of them also does IMRT, so will approach that one regarding the fiducial implants...thanks again Allen.

Is there a max amount of time after implanting the fiducials to the start of treatment that I should be following?...is 3 days the minimum and if the wait is longer than a week would I need to restart the process?...just trying to think through the coordination of all the different phases.

PAX, TA,
The best information about Pc treatment options including SBRT I've obtained from this site. As my wife and I go down this journey we're so very greatful for the shared information from those who've gone before us. Also, my heart goes out to those with a much more serious diagnosis than mine.

Dr. Berglund the Urologist at CCF who placed the fiducials using TRUS says he gets very accurate placement rectally with far less discomfort to the patient. He says going through the perinium requires addition anesthesia and that their results show equal risk (<1%) of infection. Infection risk is the main reason I've chosen SBRT over AS. I had almost no discomfort during placement except for mild pressure from the ultrasound wand. CCF uses the dye during simulation only. They find the endorectal baloon to be as effective as a hydrogel spacer.

Dr. Tendulcar RO was present for the simulation to make sure everything met his approval. My guess is most institutions would prefer to use their own simulation protocol. Enjoy LA and California. My wife and I have already 'booked' a condo on the Big Island for our 50th anniversary in 2019.

Tall Allen said...
PAX-

He was my RO as well. You're in good hands.

The treatment itself is a big nothing. You lie down on a bench and 5 minutes later it's done. I went to the gym and worked everyday. You don't need any help or care.

There is a lower cost hotel nearby that you can stay at - ask Dr King's assistant for details.

I guess you will get the fiducials placed in Hawaii? Where will you have the CT and MRI scans done, which they need to do the plan?

Here are the after-care directions I give patients about to have any kind of radiation:

What to expect after prostate radiation

Urinary, rectal and sexual side effects of treatment are usually mild and transient, although they may be worse if you are especially sensitive to radiation, are an older man, or had symptoms before you started radiation therapy. Some side effects described below may occur in many men starting anytime from a week to a month after treatment and continuing for weeks or months. The duration and intensity vary greatly between men.

If any of those symptoms interfere with your day-to-day living, call your doctor. He may be able to prescribe medication that can help alleviate those symptoms.


Urinary

Total incontinence is uncommon. There may be some leakage or dribbling. Other common side effects are irritation, burning or bleeding while urinating, feeling like you have to urinate immediately even when you know your bladder isn’t full, having to wake up several times during the night to urinate, or having to urinate frequently during the day. You may pass small amounts of blood or blood clots; however, if you are bleeding copiously when you urinate, contact your doctor immediately.

A rare but potentially serious side effect is urinary retention. If you find that you can’t urinate even though your bladder feels full, go to the Emergency Room of the nearest hospital immediately and tell them you are suffering from urinary retention. They must catheterize you to allow the urine to flow out.


Rectal

There may be a feeling like you have to pass a stool but you cannot, and this feeling may recur often. This is called tenesmus. You should be aware that that feeling is from inflammation in your rectum (proctitis), not from actual stool there, and if you strain, you may create hemorrhoids. You may have frequent bowel movements. There may be blood in your stools or blood may drip out. Hemorrhoids may occur. Sometimes stool may leak out, especially when you are passing gas. Stool may be loose, or it may be especially hard.

If you have diarrhea for more than a few days, call your doctor. If the bleeding is copious, call your doctor.


Sexual

Semen will usually dry up soon after treatment, although there may be small amounts of fluid. Occasionally, you may see some blood in that fluid or a few drops of blood may drip out after orgasm.

You may notice that, over time, erections are not as hard or as long-lasting. To protect the blood vessels supplying your penis with blood, your doctor may have prescribed Viagra or a similar medication. You should continue to take that medication for at least 6 months after the end of treatment, even though it seems like you don’t need it.

Testosterone levels often drop following radiation, but may eventually return to normal levels. Because of this, you may notice a drop in the level of your sexual desire/libido. Some men experience difficulty reaching orgasm.

If any of the symptoms are bothersome, you may want to consult with a doctor who specializes in Sexual Medicine.

A typo, I think.
Typical treatment (on the bench) is 40-50 minutes or so for 6.5 Gy (CyberKnife)

No, not a typo.

CyberKnife takes a long time because of the step-and-shoot process. VMAT linacs like Truebeam with RapidArc only take about 5 minutes.

Thanks again for all the responses and the lively discussion...learning more and more each time. In response to Allen's question about having a Urologist, yes, I do have one that I see in Hawaii. He was the one that performed my biopsy but he only recommended surgery (RALP) as far as treatment options. So not sure if he would be willing/able to implant the fiducials. I have consulted with other RO's here in Hawaii, but not sure if they would implant the fiducials if they are not going to be performing the radiation treatment--is this something that is routinely done by RO's?

Tall Allen said...
No, not a typo.

CyberKnife takes a long time because of the step-and-shoot process. VMAT linacs like Truebeam with RapidArc only take about 5 minutes.

Wow; that's REALLY fast! Should I sell my stock in Accuray (maker of CyberKnife)?


OT: I wonder about the cost to the patient (+ insurance) for using the Varian (Truebeam/RapidArc) instrument vs CyberKnife.