Meeting with RO #2

I had my initial consult with my second radiology oncologist on Tuesday afternoon. I've had a chance to process my thoughts and notes, and thought I should share (as I have for my uro and RO #1 consults). Here's the summary:

As “usual” for new patients, I first met with a nurse to complete the usual new patient forms, questionnaires, etc. In addition to all the data collected by the other RO’s office, Dr. H's office also collected and reviewed an extensive questionnaire regarding the patient’s psychological/emotional status. This information was elicited in a most compassionate manner, given the circumstances. The entire “administrative” portion of the visit lasted about 30 minutes, and left me with an impression similar to mine at the other RO’s office – that these people care about their patients, not just their disease.

At this point, Dr. H entered the room. This is definitely a “type-A” lady. She is highly engaged, high energy, and highly, highly qualified. Just my opinion, but my research supports my conclusion (Northwestern undergrad and grad school, residency at MSKCC, assistant prof. at MSKCC, etc.).

Dr. H began her discussion by saying that she knows that I have “done my homework” about my diagnosis so we don’t need to cover the basics of the disease itself. We got right down to the specifics of treatment. We briefly discussed my reasoning for choosing radiation over surgery, and the doctor accepts my logic. She did also mention that either surgery or radiation would be appropriate for my pathology, but that she agrees with me (and Dr. K) that the decision really is based upon the side effects of each treatment option and how I perceive that these side effects will impact my life.

Dr. H then began a discussion of the options generally available in radiology oncology. She indicated that the “gold standard” is still traditional EBRT, specifically now IMRT (Tomotherapy). This is given in 40+ fractions lasting about 10 minutes each, daily 5 days a week for 8 1/2 weeks. They find that they have a high cure rate for low/favorable intermediate risk patients using this protocol. For many patients, this is the treatment of choice. It is non-invasive (except for fiducials) and has good history of success over a fairly long time period (10+ years).

I then asked her about LDR Brachytherapy (as was suggested by Dr. M as a backup plan). She expressed less confidence in LDRBT, stating that it is difficult to ensure proper placement of seeds and that it is difficult to know where a higher dose might be needed or a lower dose safer. She felt that the long term results would not be as good as IMRT. We did not discuss HDRBT.

Dr. H then went on to begin a discussion of a newer form of radiation system (CyberKnife). She knew that I am interested in CK, but felt that in all fairness she should present the case for both IMRT and CK objectively and let me decide then. She indicated that the actual type of radiation used in IMRT and CK is the same, but that the equipment used for CK is far more precise, faster, and allows a higher radiation dose to be applied to the target area than does IMRT. We briefly spoke about the alpha/beta ratio of PCa and the potential higher efficacy of the high-dose hypofractionated radiation (CK) versus IMRT. All through this comparison of the two beam radiation delivery systems the doctor remained calm, objective and clinical.

This hospital has been using CK for PCa since 2011. They have treated about 200 cases in the past 4 years with very good results. No mention of any BCR cases yet. Their CK protocol is 5 treatments over 2 weeks, M-W-F; M-W. They require bowel prep (enema) prior to each treatment but there is no specific bladder preparation required. Fiducials (threaded) are implanted in the clinic (not OR) via trans-perineal access using oral Norco), topical (gel) and injected (lidocaine) pain management medication. The lidocaine stops short of being a complete nerve block, and there is some pain, but most tolerate it well. A course of Cipro is given before/after implant. No rectal culture or boost ABx needed, as the implant procedure does not breach the rectal wall. They chose to implant the fiducials through the perineum to afford better location control, better ultrasound view and lower chance for infection. If I ask, they will prescribe tamsulosin (FloMax) to ensure normal urinary function after the implant procedure. about a week after the fiducials are implanted, imaging scans are prepared for treatment planning. Typically both an MRI and CT scan are used. I raised the question about my pacemaker not being MRI compliant. Dr. H indicated that for her this is really not a problem as she relies most heavily on the CT scan for planning and only uses the MRI for additional clarification. When I asked her if she ever has a patient whose CT scan was not clear enough for treatment planning she said “It could happen, but it has not happened here.” This is in contrast to Dr. M, who seems to rely more on MRI and indicated that if my CT was not clear enough we would have to go to LDRBT, which Dr. H felt was not as effective.

Then I changed course. I asked the doctor “With all of these advantages of CK over IMRT, why would any man NOT choose CK? At this point the doctor became highly animated, smiling and admitting “I really don’t know why they wouldn’t choose CK.” She then went on to say that some people were afraid of the higher radiation dosage over fewer fractions. Some were less confident of a newer delivery system and some had trouble getting insurance coverage. We agreed that there are, in my case, no reasons not to favor CK.

We discussed possible side effects of both IMRT and CK. The doctor said that the possible side effects were the same, but that their timing and intensity differs between the two systems. With IMRT, side effects may begin during treatment, and typically resolve by 4-6 weeks after the end of treatment. With CK, the side effects also may begin during treatment, often as soon as following the second or third treatment, but that they should resolve within a few weeks or a month. Both systems may have the typical urinary toxicities (nocturia, urgency, weak stream, burning sensation), and these side effects are usually tolerable or can be treated medically. When it comes to bowel toxicities, IMRT seems to have more impact, sometimes leading to diarrhea, urgency, etc., but that CK seems to have far fewer bowel toxicities.

We also discussed some of my general questions and items related to my specific pathology. Dr. H feels that the likelihood that my PCa has escaped the prostate is “very low.” She completed one of the MSKCC nomograms and calculated (IIRC) 23% likelihood of extension. She also indicated that she feels that my odds of BCR are very low, due to my pathology. She opined that most nomograms over-state the seriousness of my pathology using the single GS3+4 core. She felt that the majority of my positive cores being GS3+3 and the very low percentage involvement indicated that my cancer would behave more like low-risk than even favorable-intermediate-risk.

Dr. H indicated that post-treatment follow-up would be PSA and T testing at 6 weeks, 3 months, then at 6 month intervals for 3 years (longer if I prefer). She would coordinate follow-up with my urologist but suggested that I continue seeing him for non-cancer-related urology follow up.

We also discussed some related specifics of my own case. These are items that the other doctors (both male) have basically said "Medical protocol is XXXXX. Deal with it." I don't take well to that type of advice, even from doctors whom I respect. Dr. H not only listened to me, but she HEARD me. She offered to help me find a workable solution, even reaching out to a colleague at MSKCC for advice. THIS is the sort of doctor I want on my team.

A public shout-out to Tall Allen and 0311, thanking them for recommending that I see this wonderful doctor. I plan to call later this week to begin scheduling appointments and get this show on the road.

Paxton, thanks for the update and congratulations on your choice. You are the poster boy for due diligence and informed decision making. Good luck; I'm sure you will do well.

Jim

Great summary! You obviously took good notes. She sounds like a really great doctor. I love it when doctors present the info one needs to help make the decision, and leaves it to the patient. Yeah, I too can't imagine why anyone would willingly go through 40-44 IMRT (or proton) treatments, given what we've learned in the last year about hypofractionated IMRT, and what we've learned since 2003 about SBRT.

Paxton,

If you decide to go with IMRT check and see if IGRT is available. It is a more precise and toxicities are lower with the Image Guided RT then generic IMRT.

Paxton these are some great posts. I think they're very helpful for our overall community and I'm sure other newbies will be relying on them for some time. (As well as a bunch of lurkers that we don't even know about.) Probably helpful for you to write these as well, as a way of organizing your thoughts and thinking through everything.

A personal pet peeve that is in no way intended to detract from your very good consultation. I've always hated when something is referred to as the "gold standard" of something. It's feels like a phrase that is designed to ward off arguments. That said, I think in the end that your doctor admitted that IMRT really isn't the gold standard anymore.

Re LDR brachy, perhaps someone here can enlighten me--do they really try to provide an extra dose of radiation to specific parts of the prostate or is the goal to provide even coverage throughout the prostate? I know when I asked Dr Kamrava at UCLA that question about HDR brachy he told me that the location of my G9 core wouldn't get anymore radiation than anyplace else within my prostate...

I hope the platinum fiducials were not as much a pain in the toosh as the third gold one was for me, right after I had mistakenly said aloud that the first two were not that painful.

Michael_T said...
Re LDR brachy, perhaps someone here can enlighten me--do they really try to provide an extra dose of radiation to specific parts of the prostate or is the goal to provide even coverage throughout the prostate?

It depends on whom you ask. I wrote an article about the concept:

Dose Painting: simultaneous integrated boost (SIB) to the dominant intraprostatic lesion (DIL)

Now that was when a dominant lesion has been identified. Some think the dose ought to vary within the prostate, even without a dominant lesion. With brachy, the coverage is never homogeneous. Near the seeds (with LDR) or near the catheters (with HDR) the tissue gets a higher dose that decreases with distance. Some SBRT ROs are trying to mimic HDR brachy by implementing something called "heterogeneous planning." Dr King, for example, is a big believer in "homogeneous planning" -- very few hot spots or cold spots. I've seen the SBRT studies so far and they all look good. I personally doubt it matters, but there are some "true believers" on each side of that fence.

One sweet discussion board success story with so many knowledgeable and helpful posters and an ears-open OP.

Good luck with the CyberKnife, Paxton - nice job getting there.

I seldom have anything to contribute, but so enjoy witnessing strings like this - internet community at work.

Best -
Wilderness

Paxton,

You asked about Tomotherapy. It is sort of its own animal with respect to image guidance.

On the CK platform, the robot shoots X-rays at your prostate to kill the cancer. But there is also a cone beam CT scanner that uses much lower energy X-rays to grab a picture of the prostate with fiducials, so that they can realign the treatment beam fairly often. SBRT has to be super-accurate because even a small geographic miss can result in toxicity. It tracks intra-fractional (throughout each treatment session) prostate motion.

IMRT doesn't have to be as accurate because the doses are much lower. For IGRT/IMRT they only set the position at the beginning of each session, using the cone beam CT (or stereoscopic Xrays) that show where the fiducials or transponders are. It tracks inter-fractional prostate motion.

With Tomotherapy, both jobs (treating and imaging) are done with the same X-ray beam. The X-rays are delivered in a pattern that spirals around your body, just like on a CT machine. The "waste" X-rays that pass all the way through you hit a detector that forms a continuous picture of your prostate. Because it is continuous, they don't need fiducials or transponders with it. It is not quite as precise a picture as the cone beam CT gives, which is why it's not used for SBRT. But I think it's great for IMRT. Nifty, eh?

BTW - both CK and Tomotherapy are now made by the same company - Accuray