Questions to ask the Radiation Oncologist on 8/1/12?

In other posts out here I have mentioned that I am headed to meet with a Radiation Oncologist at Froedtert Hospital / Medical College of Wisconsin.  I am meeting with Dr. Colleen Lawton M.D. who is the Professor of Radiation Oncology at the Medical College of Wisconsin.  As a side note while researching Dr. Lawton's background I found that she was recently chosen by her peers as the President-Elect of the American Society for Radiation Oncology, so I liked hearing that!  I also found out that her father was actually treated for locally advance prostate cancer as well.

So anyway I have put together a list of questions for this visit on Wednesday - but was looking for help from this wonderful group of folks out on HW.  For reference my conditions are listed in my signature line.

Any input would be greatly appreciated.

Are you considering RT (regular Radiation Treatments) or "Seeds"?

Some of the questions would be similar, but some would be different depending on which method was used as a primary treatment.

If regular RT:

How many gys. of radiation would be administered?
How many sessions would that radiation be delivered?
Would they require a full bladder before each treatment?
How much water do you need to drink ahead of time, and when do you drink it?
Will they be using CT scans or conventional X-ray scans for alignment purposes?
Will you need to have any kind of body or thigh cast for the treatments?
If you get nauseated later on, what do they suggest?
If you have urinary urgency, how do you deal with it?
If you have urinary burning, what will they give you to deal with it?
Will it effect what ever level of continence or incontinence you are currently at?
Will it effect whatever stage of ED or non-ED you are currently at?
What method and radiation machine are they intending on using?

(Those are some good starter questions)

Ask them to spell out in detail, any expected or common side effects during the duration of the radiation.
Ask them about expected side effects 6 months to a year after the radiation ends.
Ask them what kind of follow-up can you expect after the radiation treatment ends.
Ask them when would they want to do the first post-radiation PSA test, and what would they expect at first.

I have been through major RT twice in 12 years, so I am very familiar with the routine.

If you are considering "Seeds", I would prefer some of our "Seed" brothers to make the questions for you, as
I don't have first hand knowledge of that.

Hope this helps you, and for sure, take notes, and don't be afraid to push for full answers, I have found RO's reluctent sometimes to give full answers on any of the negative aspects of RT, so ask openly and freely.

David in SC

Yoop, I found the following in my files that was drafted just prior to my consultation with my LDR brachy RO.  I know I added to these somewhere in a thread on HW a couple of years back but this was a good starting point for me. Jim Questions Regarding Brachytherapy     1.       How many of these procedures have you done?   2.       Do you recommend this for my situation?   How do you compare this for my situation vs. surgery?         3.   For my situation, do you recommend brachytherapy alone or with other radiation treatment?     4.       Is there any need for hormone therapy?     5.       Explain the procedure…pre op, op and post op.   6.       The seeds: a. Some of the literature suggests using MRI to insert the seeds.   Is that your technique and, if not, why not?   b. How many seeds and what type?   c. Have you had any issues with seed migration? d. Could you give us a general idea of how the seeds are plotted?   How many in each section, etc? e. What is the life of the seeds?   Time release ? – please explain. f. Do the seeds affect other organs?     7.       What is the timeline…pre op, op and post op?   8.       If I decided this week, when would we start?     9.       What are the side effects for your patients?   Do you have percentages?   How about side effects over time, i.e. quality of life 2-3+ years out?     10.   Re the urinary side effects, how effective are the drugs to control them?   Same for sexual?   Bowel?     11.   Will this cure the cancer?   12.   What do you see as the advantages of this vs. surgery?     13.   If I have this process and the cancer returns what happens?   Is surgery still possible in the future?  If not, what salvage treatments are available?                                            

Take someone with you if you can - I was the note taker and wrote everything down.  Your notetaker has to go into "auto mode" and just write EVERYTHING down whether you understand it or not.  When my husband came come he kept asking questions - he heard differently than I did - the notes were the deciding factor.

Ask about "stranded seeds".  Six years ago there were a relatively new procedure, now they're pretty common place - less chance of "migration".

Ask about any dietary or physical restrictions.  Alot of it will be trial and error but you want to make your recover as smooth as possible.

If you are going to be around small children, ask about the lead underware - yes it exists and you can usually borrow a pair from the hospital.  We borrowed a pair as my husband was around wee ones and we just felt more comfortable. 

If you wife is at all concerned about how it might effect her, ask that question too - although you're going through the procedure, it will ultimately effect your relationship with her.

Hope this helps, let me know if you have any other questions.

 

Trust me on this one there is no "my problem" in this one.  Whether you believe it or not, it is a family "experience" for lack of a better word.  It effected my husband, it effected me and it effected my children - all in different ways.  In fact, it also effected my male friends who were bombarded with requests to get a yearly physical!

Just knowing you are not alone will make this just a little bit better and lean on those of us who have been through it - preparing for a bit of an emotional battle will make the ups and downs a little easier to take - for both you and your wife.  The more information you are armed with on all fronts the less you will panic and let's be honest, our "plumbing" is different so there's always something new to learn LOL...

 

Yooper,
I went into my first meeting with the oncologist with a list of questions not unlike Tudpock's. After the good doctor finished his presentation, I seriously did not have to ask a single one of my questions. He had answered every one without my even asking. That pretty much told me that I was dealing with someone in whom I could trust.
As someone else mentioned, you are way ahead of the curve preparation wise. You will be fine.
God Bless

Hi everyone. Well, I did meet with Dr. Colleen Lawton yesterday and quite honestly was not prepared for her response - she stated that in her opinion surgery would be the path to take. As the head of Radiology at Froedtert/Medical College of WI I guess I was expecting her to suggest radiation and in fact had two pages of questions prepaired regarding that direction. So then my world got turned upside down as you can imagine. She did a quick physical check including a RE. We then had a very lengthy conversation and at the end of the day the reason she is recommending surgery is:

My young age (55) and the life expectancy I should have.

The fact that I am in excellent physical condition which should decrease the potential for post-op issues including incompetence and ED.

The number of biopsies that were found to have cancer (see Gleason details in my signature line) from the perspective my cancer is well spread and therefore we want to get rid of it before it goes beyond the prostate.

Her point that should the cancer return and I go with radiation first, then surgery becomes very, very difficult due to scaring of the prostate and other issues, and therefore other salvage approaches may not be as effective - whereas by going with surgery first should the cancer return the options and success opportunities for salvage is in a much better position.

So I'm back on the "bad side" of this rollercoaster ride - going from initial reaction of surgery to get this thing the hell out of me, to deluging myself with data to the point of paralysis by analysis, to thinking (and now thinking that perhaps I was 'hoping') that Brachy was the right thing to do - to now trying to get my head around this latest turn of surgery being the option based on all of the above. The input received from Dr. Lawton yesterday closely mirrored what my urologist told me as well as Dr. See / open surgeon told me.

So o.k. guys, feel free to weigh in; I'm thinking my next step is to a) start a new thread here on "what to ask the surgeon", b) continue my research now more focused on surgery, and c) schedule an appointment with the surgeon to ask the "50 Questions."

I WAS feeling better about this process as I thought that I was close to a decision on treatment - now I'm set-back and feel like I've got to go through all of this crap again. Dr. Lawton did suggest that I make my decision to have treatment in the next 30-60 days.

I really feel that Dr. Lawton was sincere and looking out for my best interests; she warmly made the point that if I were her brother she would absolutely push him down the path of surgery versus radiation despite that is what she does. She concluded that it was my decision and that she can only offer me her recommendation based on all of the facts, examination, ect. She also told me that if I were to make the decision to go with radiation that I could of course come back to her and her team.

I sent you an email

Mel

If a top radiation doctor is telling you this, I would weigh heavy in favor of her advice. When I was thinking through my primary treatment decision back in 2008, a radiation doctor told me that he didn't think I would be qualified to "seeds" with my stats (was my first choice), and thought that surgery would be the better path for me as well, for the same reasons you were given. Some of the radiation guys will downplay the point about surgery first, radiation as a back up, but there are lots of logistical reasons why that still makes sense to me. My own uro/surgeon told me, that in his entire career, he assisted in a single post-radiation RP, and it was one of the most horrible surgeries he had ever seen, and that he would never do one or be part of one again. The risks of greater damage are high, and the chances of perm. ED and incontinence are almost a given after such an operation.

You asked for good advice, and in my opinion, for you, you got it. Still your choice, not to muddy the waters, but I bet if you went to two other RO's, you might get a favorable opinion on going with radiation. But then in the end, which opinion do you go with? THe one you want, or the one that is right for you, kind of a catch-22 in that process of multiple opinions.

Good luck to you, I know that none of this is easy for you. Time to take another deep breath, and re-group.

David in SC

Thanks to everyone that has replied today. Mel, I did see your e-mails and will get back to you that way, thanks too. . . . Busy day at work today, very important customer visit and I'm just now getting a few minutes of breathing room. Funny, all of this and yet day to day must also go on. . . .

Wondering if I should start a new thread to gain input with respect to my PCa conditions/stats and the recommendation to have surgery - what do you guys think?

Julie/et al I am pondering if I should contact a Brachy expert to get yet another opinion. At the same time I am starting to realize that I may have "wished" myself into believing that Brachy would be an option, and that if I consider all of my stats in sum - it is looking like surgery. One of the requirements that I don't fully understand is the one about "can't represent more than 50%" - can someone explain that to me? Does that mean no one positive biopsy can be more than 50% - in which case I 'pass', or does it mean that the sum of all positive biopsies cannot be more than 50% - in which case I 'fail', or????

Back in this darn analysis by paralysis / information gathering / confused place and not liking it at all......

You have joined my little corner of the PCa world. My uro (a surgeon) gave me the line you got from the RO. The RO was very ready to go for RT, but quoted what I thought were pitiful if not abysmal success numbers for my situation. MD Anderson turned me down flat for seeds, saying I was too far advanced. They advised surgery. I got the same feedback from multiple "second opinions". All but the first RO were working on the theory that the SEs of surgery could be dealt with, and that I should expect to live long enough to have to be very concerned with the long term SEs of radiation.

In the end I did surgery, the post-op path was horrible, and I did adjuvant RT. In the two years since RT completed, my PSA is doubling at an increasing rate, down to 75 days at last check. HT is next in the queue. And I have all the SEs of both treatments.

Isn't it wonderful to get to make a choice?