Fore-warned is fore-armed

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NutmegCT
Regular Member


Date Joined Mar 2011
Total Posts : 46
   Posted 4/23/2011 7:17 AM (GMT -6)   
After weeks of searching this forum, and posting my questions, I got to thinking ...

How many folks here were given any detailed written information about what to expect after their "procedure"?

Things like, possible side effects and how to deal with them. Diet suggestions to help recovery (e.g. spicy foods and caffeine may cause urinary frequency and burning). Soreness immediately afterward, and discomfort for a few weeks/months. What's "normal" and what you should contact your doctor about.

Things like that. Seems that if folks had some suggestions of what to expect in the near term, a lot of anxiety could be eliminated. The common "expect some urinary and bowel changes" just doesn't cut it.

Thanks.
Tom in CT
Age 62, Biopsy September 2010.
PSA 4.8, Gleason 3+3, Stage T1c, 4/12 positive cores at 10-40%.
Palladium 103 implant February 1, 2011.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/23/2011 7:29 AM (GMT -6)   
My wise guy answer could be total disclosure and full truths don't sell really well. There is a piece written by English Alf on what to expect (totally) in some treatments, like surgery and radiations (best overall disclosure I have witnessed...should be posted in the docs office or given as a hand out). (found at the top of this forum-fyi)

Perhaps they love the anxiety, who wants to take all that time to educate a patient, when getting onto the next patient is the most rewarding experience. Some docs do educate patients and some hope you never get any education....I have seen both types.
Alot of patients are rushed into making the biggest decision in their life....but trust everything and no questioning is working really well as you can see.

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2680
   Posted 4/23/2011 7:53 AM (GMT -6)   

I really can't remember anything happening after surgery that I hadn't been either warned about beforehand, or which I hadn't read about on half a dozen websites from major treatment centers concerning "what to expect after your prostate cancer surgery."  I didn't find this HW site until a month or so after the surgery, but I had already read answers to most of the questions which we normally see here on HW.  Certain SE's, such as ED issues, I knew about but for some reason felt personally invulnerable.  So, that has been a continuing disappointment.

The info is certainly out there.  It's not that difficult to find.  Plus, the doctor's office gave me a sheet with a lot of information about what to expect, and when to call if certain conditions presented themselves. 

So, for example, when I started having the almost painful feeling that I was urinating while the catheter was still in place, I knew right away it was almost certainly bladder spasms, and within an hour the doctor had called in a prescription that put an end to that in short order. 

Certainly the doctor should caution the patient about possible side effects and after effects, but I think it's also reasonable that patients do their own research.  I wouldn't buy a car without doing a lot of reading about the model I was considering; and I wouldn't have cancer surgery without researching it first.  I even watched a couple of YouTube videos that showed the DaVinci surgical procedure. That convinced me this was pretty major surgery. 

 Lots of stuff out there, and knowing in advance definitely reduces anxiety.


tvwohio
Regular Member


Date Joined Sep 2010
Total Posts : 175
   Posted 4/23/2011 8:12 AM (GMT -6)   
The problem with forewarned is how YOU as a person react to surgery as well as any complication which may occur from the surgery or stay in the hospital.

We are all unique organism, my background bio/chem, so I know that certain items affect us different. I cannot take oxycotyn (doesn't work) for pain and codeine - 3 days is my limit before I get anxiety/depression.

How many of us are hypochrondriacs - the first little symptom we pop a pill or call the doctor.

The doctor can give you a list of potential problems and may or may not happen but the one symptom may just happen once or not happen.

I agree with clocknut - the doctor can give you some basic "watch-outs" but YOU have a responsibility to read up on what may happen.
Prostrate Cancer 2001 RP 50 years old PSA 6.8 Gleason 3 + 2 40% T3bNxMo moderately differentiated adenocarcinoma RP - cancer apex area, nerve sparing not successful Bulking using both collagen and teflex unsuccessful for continence. 4 sets of strictures within 1 yr after RP - 3 manual and 1 rotorotor -9/2010 stricture - suprapubic catheter folled by Homan Laser. AMS800 1/22/11. Dry 3/9/2011

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/23/2011 8:33 AM (GMT -6)   
not written, but everything was disclosed verbally. It was also disclosed in different ways. Initial visits focused on the big overall issues, while in hospital after surgery they talked to me about the post op recovery process, then when I went to have catheter out more on reaction to that, what to monitor etc. then when I went for first PSA test an overview of the road ahead.

A lot of what they tell you is in response to the type of questions we ask. I also don't think it's the same responses to everyone given pre existing conditions, age etc.

It was overwhelming at times which is why I always had someone wit me.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/23/2011 8:47 AM (GMT -6)   
Zufus, when you say things like this quote of yours from your post, I hope you really don't believe it yourself:

"Perhaps they love the anxiety, who wants to take all that time to educate a patient, when getting onto the next patient is the most rewarding experience."

Through all the maladies I have fought over the years, I have never met a doctor that is the way you describe in your posts and
threads. Perhaps you are a non-compliant patient, that thinks they are smarter than their doctors.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3887
   Posted 4/23/2011 8:51 AM (GMT -6)   
I have received all that from my urologist and radiation oncologist, the therapists, the hospital, and my pharmacist. Plus I sign a disclosure every time that I have received it in writing and verblly.

I had absolutely no surprises and no ignorance as my docs took me through everything in great detail. I have had very thorough practitioners and I am a very inquisitive patient. I hope that makes a good combination.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010, HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/23/2011 9:01 AM (GMT -6)   
At every point in my PC journey, my uro has been first class on keeping me informed of all the would could happen or if it happens scenerios, both written and oral, and his followup on such matters is above reproach. He's been with me, thick or thin, through all these messes I have endured.

Still the patient's responsibility to learn as much as they can on their own, a doctor shouldn't expect to tell you that 1 guy in 10,000 had a rare reaction or side effect issue. Communications is a two way street between a doctor and patient, they aren't mind readers. Go armed with a notebook or recorder, take another person in the room, ask away, and don't be intimidated by time, when you are in the room with your doctor, he's working for you.

The being properly armed is the patient's responsibility
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/23/2011 9:26 AM (GMT -6)   
I had no surprises whatsoever. Everything was explained to me.
 
Zufus -- you continue to make outlandish statements.
Of course there are unethical doctors. There are unethical people in all professions. But you keep mentioning the RARE exception as if it typefies the profession.
 
Mel

NutmegCT
Regular Member


Date Joined Mar 2011
Total Posts : 46
   Posted 4/23/2011 10:11 AM (GMT -6)   
I was hoping this thread wouldn't turn into a cut down of other members. Sorry it's developing that way.

Altho' I totally agree on the patient doing his/her own research, until you experience your own specific symptoms, you don't have a lot of detail to search for, and/or ask questions about. One thing I've learned recently, is that many guys who say "no side effects" in their signature info, don't mean they *never* had side effects.

One interesting aspect ... how do you ask detailed questions of your doctor about what happened last night (for example), when it takes a week to get an appointment? And telephoning just gets you to an advice nurse, who doesn't have the specifics of your own situation.

JNF - were the information sheets you received for post-PCa procedures, and specific side effects and symptoms? It would be very helpful to see what information was shared with you.

Thanks.
Tom in CT
Age 62, Biopsy September 2010.
PSA 4.8, Gleason 3+3, Stage T1c, 4/12 positive cores at 10-40%.
Palladium 103 implant February 1, 2011.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 4/23/2011 10:19 AM (GMT -6)   
My surgeon, Dr Jean Joseph, University Urology, University of Rochester Medical Center, gave me a complete handout beforehand. It fully explained what to expect, the recovery, success rate, etc.

However, I was sure none of it the bad side effects would happen to me. Sure my PSA was 23 and my biopsy was 7 out of 12 with up to 70% involvement. But, Dr. Joseph is a genius. I will be fine in a week and have solid erections a week after the catheter comes out.

Face it. We're guys. We all believed that or else our wives would never have gotten us into the car.

Jeff
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Glsn 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11 Dry

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2680
   Posted 4/23/2011 10:33 AM (GMT -6)   

I just discussed this with my R. N. wife.  She says there's no reason the "advice nurse" shouldn't have access to your medical records and the specifics of your case.  Where she works, the triage nurse has access to 40 thousand records and can review the individual's records if it's a question without an obvious answer.

If necessary, the nurse discusses the question/problem with the doctor and then conveys his response to the patient. If it's a decent practice, and if the problem is potentially serious. any doctor reserves several slots per day for emergency situations.

Twice I called my surgeon with questions.  Once, the office nurse called me back with his answer, and the other time he himself called me back later in the day.  I never expected him to jump right on the llne and talk to me.  I would not have wanted him to walk out of the exam room during one of my appointments to answer some other guy's question about catheter care or some other non-emergency situation.  I wouldn't have been very happy had he done so.

Nutmeg, can you give an example of a question you had that was ignored or not propeerly answered?  Something must have happened.

 


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 4/23/2011 10:45 AM (GMT -6)   
Nutmeg/Tom:

Although my own Uro/PA/surgery nurse gave a smattering of info about life after surgery etc -- this sticky topic list gives it ALL -- established by JamesC and consolidated by EnglishAlf/Alfred -- it is a gold mine. So who needs the doc?? So yes, the folks here have spoken about what we would have liked to know but they did not necessarily tell and have said it all:

www.healingwell.com/community/default.aspx?f=35&m=1717641

Hope that link shows up? If not it is right up there in the sticky topics.

I know one thing not to do -- don't eat a big hospital Turkey-mashed pots-rolls-gravy-veggies 'first meal' right there in the hospital !! Took 4 days to get that sucker to go thru -- and a bit of a fight to get it to come out even then!

J

NutmegCT
Regular Member


Date Joined Mar 2011
Total Posts : 46
   Posted 4/23/2011 10:56 AM (GMT -6)   
Hi Clocknut.

I'm hesitant to get into specifics, as I hoped this thread would concentrate on whether guys got specific "what to expect afterward" or not.

It's difficult to get all the details of a phone conversation into a post; it then can get picked apart easily, when all the background and detail isn't known by the reader.

By the way, I can't say a question was ignored. But the response from the nurse was pretty generic. "Tight stretched-rubber band feeling across the upper abdomen for two months after the procedure, with infrequent twinges on the left side of the bladder? That's pretty common. Just take ibuprofen 200 mg for a few days."

But when I asked about it on the forums I visit, no one has ever said that happened to him. That prolonged abdominal discomfort may very well be common, but without any prior "warning", my anxiety level shot up.

There are other things, but I'd like to keep this on the "fore-warned" topic.

Thanks for asking.
Tom
Age 62, Biopsy September 2010.
PSA 4.8, Gleason 3+3, Stage T1c, 4/12 positive cores at 10-40%.
Palladium 103 implant February 1, 2011.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/23/2011 11:21 AM (GMT -6)   

Plenty of good points in this thread.

 

I don't think the medicos can cover every possibility and sometimes we don't fit the generic mold.

I've been having plenty of "non-generic" problems with my SRT (different thread) and, so far, none of the typical problems.

 

Mel


davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/23/2011 11:42 AM (GMT -6)   
I have to say that my surgeons nurse was amazing. She not only gave me all the details, explained the process probable side effects, potential side effects and what to do in those cases, but she was simply wonderful at reading my anxieties and having a way yo calm me and reassure me. No, tat doesn't cure us or guarantee anything, but it put me in a state of mind that was more relaxed and very positive. I think that is important when going through our entire process. My surgeon didn't work out perfectly for me only because of his skill, empathy and the results of his surgery, but because of the team he had in place. I had a contact for every part of the process. It was a complete team effort. They made a point of having every angle covered, from billing to recovery. The entire process is very overwhelming, even moreso for those of us who complete it within 4-5 months of discovering the cancer, having a functional and caring structure to help us through the entire process is very important in my opinion.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/23/2011 11:51 AM (GMT -6)   
Howdy Mel- Are you saying some of my docs were unethical (lol)? I got 8 face to face opinions back in 2002...many of these various docs were considered good to great. I did find 3 of them to fit wonderful criteria(either fired them or crossed them off the list), the others were very good and worthy to chose from and/or were nice enough to tell me surgery in your case is ridiculous like Dr. Menon stated and I applaud real truth vs. being cashed in on for no benefit to me (he stayed on my list as a righteous one). So, I doubt I am the only one whom ever got this type of reception...plus read on other forums many whom got the rush job sold to them and without decent disclosures.

Just think of me as the other story, or other point of view....people need to hear it all..full disclosure. Andrew (Ohio State) fired his local Cancer Treatment Center...you would enjoy his updated story...do you want his email address????

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/23/2011 12:09 PM (GMT -6)   
Nutmeg

Disagreeing, disputing opinions, etc. is not exactly "cutting down other members", it is a forum of wide ranges of opinions. I don't see that going on in this thread.

As far as your original thread started, it looks like you are getting the types of answers that one would expect from your original post. Perhaps you need to ask what you are thinking a different way.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

NutmegCT
Regular Member


Date Joined Mar 2011
Total Posts : 46
   Posted 4/23/2011 12:19 PM (GMT -6)   
"Perhaps you need to ask what you are thinking a different way."

Hi David in SC. Thanks for the reply. Just to clarify, I'm asking how many folks here received some detailed written info on what to expect after their procedure. Things like possible common side effects and how to deal with them.

I have used the "really helpful list" topic, which is very helpful. But it doesn't give much detail on post-brachytherapy situations, particularly the abdominal distention/discomfort and diet influences on urination.

Thanks.
Tom in CT
Age 62, Biopsy September 2010.
PSA 4.8, Gleason 3+3, Stage T1c, 4/12 positive cores at 10-40%.
Palladium 103 implant February 1, 2011.

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2680
   Posted 4/23/2011 12:31 PM (GMT -6)   
Nutmeg,
Somehow I missed in your original post that you were a brachytherapy guy.  I think several of us were responding as surgical guys.  I wonder if, as Mel suggested has been true in his case, radiation can lead to SE's which are less predictable than surgery.  That would make it very difficult for the medical folks to be as straightforward in talking about what experiences might follow the procedure.  We need some brachy guys to speak up, I guess.
I've never had radiation treatments of any kind, so I guess my experiences may be quite a bit different from yours.  Bill

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 4/23/2011 12:36 PM (GMT -6)   
Nutmeg,
 
I got both verbal and written info from both the uro and the radiol/onc who handled my BT and IGRT. They covered all possible SE's so I got only one surprise which was minor (and went away in a week after BT). I was very satisfied with their "disclosure".
 
That said, I agree with compiler above. I don't think the docs can cover it all. As we have learned on HW, every case is a little (or maybe a lot) unique when you factor in all the variables. Too bad the "sticky list" can't get wider exposure.
 
Joe
Age 68 PSA 4.5 Biopsy 9/4/09 Bostwick Labs 5 of 8 sections (5 of 11 cores) positive-Gleason 3+3=6 Stage T1
BT on 12/11/09 (84 seeds of Palladium 103) Home same day/no catheter. Some burning, frequency, urgency for 6 weeks. No incontinence, mild ED. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA as of 4/14/11 - 0.1

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/23/2011 12:41 PM (GMT -6)   
tom.

i see now. that you are a "seed" guy, and there are several qualified "seed" guys here that could probably best answer your question. i too, assumed you were post surgery, i see in your signature what your treatment was, you know what they say about people that assume. sorry some of us misunderstood.

i originally wanted to be seeded, but i was considered too high risk at the time, and ended up with open surgery.

hope you find some relief and the answer you are looking for

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 4/23/2011 12:52 PM (GMT -6)   
Tom, I was fortunate enough to receive a very complete set of written pre procedure info as well as post-procedure from both my urologist and radiation doc.  The data included a comprehensive list of potential side effects with the disclaimer that if the patient experienced something "not on the list" or "worrisome" to call the doctors immediately.  And, both doctors had a policy of same day return of phone calls.
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 4/23/2011 12:58 PM (GMT -6)   
Whatever the procedure I cant imagine not being given information related to post surgery side effects as well as tips. Still have my pacet from my Dr and that was 2 years ago. And also with my SRT. But some people certainly had unexplained side effects likely not covered in any pamphlet. That would be "call your Dr right away" section.
Michael

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/23/2011 1:06 PM (GMT -6)   
there were countless brochures and pamphlets, but those weren't as detailed and timely as the verbal information.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX
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