About staying local--good vs. great-- a vent

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compiler
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   Posted 4/7/2011 5:30 PM (GMT -6)   
I'd like to make some comments regarding local vs. distant experts. It could be the difference between good and top-notch.
 
I did the top-notch thing and had my surgery by one of the acknowledged best surgeons around. That did not guarantee a good pathology and my pathology was lousy. I don't blame the surgeon. In fact, I had a great recovery with no surgical complications. I do have ED. But I recovered very quickly and uneventfully. I healed well. No fatigue. I quickly regained continence.
 
Ok, the surgery still failed to cure my PC. So now its SRT time. I chose to stay local. The local place is the major cancer center for mid-Michigan. So, no slouches. They also have the latest and greatest equipment (Varian Trilogy RapidArc). My own doctor and another doctor who is a friend both said I can't get any better treatment elsewhere. My other choice was a true world-class facility: Umich. That is 120 miles away. If I went there, I would probably have rented a place. I would have had to stop work (a job I love). It would certainly be inconvenient and HEY WE GOT A GREAT LOCAL PLACE!!
 
But, let's look at my experience to date. I had some severe bladder burning starting with my 4th session. The radiology-oncologist who was so nice and helpful and seemed so smart during my original consultations when I was trying to decide where to do the SRT was at a loss to explain this. When I arrived at each session they asked if I drank water. Well, I did, but I was just finishing it seconds before I went on the table. I even asked the radiology guy if the timing mattered and he didn't think so. But I soon realized that it takes 20-40 minutes for the water to hit my bladder. Once I did this, the bladder burning diminished greatly (about 95%). It is no longer an issue. But then I started getting very bad rectal burning. I was miserable. Well, locally, they make absolutely no mention about having an empty bowel (it seems they certainly do elsewhere). I brought it up and never got a straight answer. Well, this week I was lucky enough to have a decent bm about 2 hours before the session. This happened on Tuesday and today. Guess what? The burning rectum issue is much better also.
 
WHY AM I NOT TOLD THESE THINGS. I asked.
 
Maybe these are some of the subtle differences between good and great. I can only hope that the radiologist's plan is great. But I have to say that I am not pleased. These are little items but somehow I am not experiencing excellence locally.
 
I can tell you that this only reinforces my plans to consult with 1 and probably 2 top-notch specialists should SRT fail.
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64. Surgery: Dr. Menon @Ford Hospital, 1/26/10. Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- yes.. PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06; 1/4/11-0.13,3/1/11--0.27

davidg
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   Posted 4/7/2011 5:40 PM (GMT -6)   
I think one of the first lessons learned was to ignore my instincts to stay local with a guy I felt comfortable with and instead seek out one of the best. This was a struggle between me and my family initially. They were very subtle about it, but convincing enough to at least get me to agree to a consultation with the "great" guy.

Now the first thing I would tell anybody is to get the best doctor/surgeon. That the best doctor in one field is better than a mediocre doc in the field you initially prefer.

My local guy was 1 mile away. I ended up going 32 miles away. I guess to some that's still local. I'd say 120 miles is definitely not local and a trek for sure. I couldn't believe my surgeon had people flying in from all over the world and the States. Met one guy who came in from Boulder. I cannot begin to imagine having to go through what we went through with travel, taxis, hotels and planes on top of everything else. This guy from Colorado brought wife and son and they made a sight seeing vacation out of NYC before the surgery, and while he was recovering in hotel for a week, the wife and son continued to go to museums.

Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 4/7/2011 5:42 PM (GMT -6)   
Mel,

Your vent on this subject is well understoon and appreciated.

I don't think what you are going through right now, has anything whatsover to do with where you currently undergoing or the "world class" center you mentioned. You correctly noted that it was not your surgeons fault that your had BCR. That situation was unique to your body and your cancer, not to the surgeons skill. I fully agree with this.

As far as your side effects so far, they do suck. They may get worse, they may abate, I hope they do so you can get through the rest of it in peace.

I believe what you, Mel, are experiencing, is simply how your body is reacting to the ravages of radiation in general. I honestly think many men down play or dont understand what radiation is doing to their body. They don't realize fully the risk, and how each body reacts differently to the effects of radiation. Sure, there are guys here, that it was a walk in the park, I don't dispute their testimonies. But for some, myself included, our bodies react in a negative way, and in some cases, quickly.

There is no way your current radiation center or the "world class" one could possibly predict how Mel would react to the radiation, there's a million and one variables in your body's makeup that is determining that as you go along.

This is not a good time to second guess where you chose to have SRT. You know fully that you needed it, and that there were risks and potential side effects when you signed the dotted line so to speak.

Your vent is fully understood by this brother. Been there, done that, and been on the rawest side of the deal, and then it didn't work anyhow.

You are getting through this one treatment at the time, hopefully these painful and annoying side effects will at least diminish once you are through. Radiation is serious business, I say that from two events from first hand experience.

Good luck, we are here for you

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 marg
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
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,

Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 4/7/2011 5:45 PM (GMT -6)   
davidg - you do realize that Mel is talking about a 35-40 treatment salvage radiation treatment, an 8 week commitment, not a surgical stay? He would have had to have the time and resources to stay at the other center for 2 full months. That's what he's talking about.
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 marg
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
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,

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/7/2011 5:49 PM (GMT -6)   
yes David, I realized. Leaving comfort of your home/community for any of these treatments, whether 1 week or 2 months is a major emotional and financial investment. It's really tough.

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 4/7/2011 7:49 PM (GMT -6)   

 

Mel, your first-hand experience helps validate what others have also found.  You may or may not have seen a post I created over 6-months ago covering this same territory...I will post it again, below, for others who may have missed it or newcomers since that time, or newcomers yet to arrive...

Here's the LINK to the entire thread started by me on 9/26/10, and below is what I wrote in about the 12th post down...

Casey59 said...

What added value is there is choosing a Comprehensive Cancer Center (CCC), or an expert dedicated to prostate cancer (in our case, for example) treatments in private practice? 

 

While the US indeed has some of the best cancer care in the world, there are clear disparities in cancer diagnosis and treatments documented in a report last year between the top cancer centers and the community settings (local hospitals and generalists in private practice).  [Note that this report was not prostate cancer-specific; it addressed all cancers, but some prostate cancer examples were given.]  First, in order to tee-up the heart of the comparison, consider the two opposite ends of the spectrum:

 

On the one end of the spectrum, some tumors are so non-threatening and their treatment so standard, that it shouldn’t (and doesn’t) matter where you go…your chances are pretty good either way.  For common cancers such as prostate, breast, and colon, the surgery can be very well done in non-CCC settings and the survival rates are comparable to those at the elite cancer centers.  Five years after the nine most common cancer surgeries, the study reported 62% of the patients treated at the CCC centers were alive, compared to 58% at the community hospitals…a difference, but not a huge difference. 

 

On the other end, against some cancers, even the top medical wizards are helpless.  Ted Kennedy’s case of glioblastoma was referenced; he lived 15 months after his diagnosis despite treatment at the Duke University CCC, just slightly over the median survival period.

 

 

What about the millions of cancers cases in the middle—those that are neither hopeless nor straightforward (or as straightforward as cancer can be)?  Here is where differences in outcomes based on where you are treated were most noteworthy.  Fox Chase Cancer Center (in Philadelphia, a CCC facility) provided this data, for example, on the five-year survival of stage-4 prostate cancer patients which highlights the differences:  71% at Fox Chase versus 38% nationwide average.

 

The quality-of-care differences found in the study were, interestingly, not related to who has the newest, coolest multi-million dollar machine, in which case one could forgive small community hospitals for lagging behind.  Instead, it comes down to such basics as experience; to getting the correct diagnosis; to whether doctors address holistic aspects of diet, exercise, and psychological health; to whether doctors routinely test tumors for molecular markers that can guide therapy; to whether multi-disciplinary care is coordinated or haphazard; to how well doctors monitor patients (after surgery, radiation, or chemical treatment) in order to minimize the chance that the cancer will recur.  Examples were provided in the report, three of which I will bullet here:

 

·         Prostate cancer patients already know the importance of expert biopsy pathology readings.  The physician-in-chief at MD Anderson (CCC site) estimated that patients traveling to Anderson have an incorrect diagnosis from a community pathologist about 5 to 10 percent of the time.  Clinically important diagnostic errors can lead to improper or incomplete treatment.  From my personal experience, although I had an initial biopsy reading from Bostwick (known expertise in prostate pathology), when I moved from my local urology generalist who diagnosed me to a CCC my slides were re-read for confirmation at the CCC pathology lab.

·         Another rule that we prostate patients also already know about surgery is to select experienced surgeons.  Outcomes for complex surgeries have significantly disparities between top cancer centers and community hospital settings.  For tough surgeries, you want the doctor who’s been around the block, so to speak; surgeons at the top centers have generally sharpened their teeth elsewhere first.  Furthermore, length of stay and rate of surgical complications are lower at the top centers versus community settings.

·         It was interesting (to me, this was one of the most interesting aspects) how the report characterized a general difference between the approaches of oncologists in the two settings.  Doctors in the community setting (generally) report that there is a lot of art in the treatment of cancer, whereas oncologists at top centers say it’s a science.  “Art” might sound desirable and even personal—my oncologist isn’t blindly following a recipe in treating me!—but it covers a lot of sins, notably the tendency of some doctors to pick treatments that worked for other patients, even though those results might have been statistical flukes.  The “recipes” are well established (see the link to the NCCN Clinican's Guidelines for Prostate Cancer in the original posting) by the National Comprehensive Cancer Network (NCCN). 

 

The third bullet (above) notwithstanding, the top cancer centers were also found to have a much stronger ethic of trying anything and everything when cases turn desperate.  The report highlights that this aspect does not show up in five-year survival data, but can make a huge difference to a patient who gets to celebrate one more wedding anniversary or the birth of a grandchild.

 

 

After this report was published last year, the National Cancer Institute (NCI) launched a quality improvement program to help raise the bar at the community cancer center programs.  Here’s a link outlining the program:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2764567/

 

The Association of Community Cancer Centers (ACCC) has also responded (following “encouragement” by the federal government, insurance providers, and medical specialty societies) with a training & education program directed at improving adherence to Clinical Practice Guidelines.  See here:  http://accc-cancer.org/education/education-guidelines.asp

 

 

Now, when your friend tells you they have been newly diagnosed with cancer, you can now point out that while the local community hospital might go a great job of making them feel welcomed and well “cared for”, and they will probably have good results, you now understand why they should consider one of the NCI-designated Comprehensive Cancer Centers for the best possible results.

 

Once again, I should repeat my closing note from the original post in this thread; I’ll simply copy/paste:

Is very good care also found elsewhere [i.e., in community hospital settings or at private generalists]?  Absolutely.  Will there be people who feel that they had unfavorable experiences at these centers [the CCCs]?  Absolutely.  But taking the broad view, these centers [the CCCs and the private expert specialists] would absolutely be considered the cream of the crop.


John T
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Date Joined Nov 2008
Total Posts : 4228
   Posted 4/7/2011 7:52 PM (GMT -6)   
Mel,
Sorry to hear about your problems. When I started to look for radiologists I was willing to travel to get the best. (I'm retired and could afford to do that; I know it isn't an option for others). I ended up with a radiologist and a brachytherapist within 10 miles of my house. My experience was completely different from yours. It was explained that I needed to drink 32 oz of water 30 minutes before each treatment and the tech drew a picture of the bladder and showed how the radiation beam affected a full bladder vs an empty bladder. If the pre radiation CT scan showed the bladder not in the correct position they made me drink more water before they would proceed. I thought all of this was a little excessive as most other patients I had heard of only had to drink 16 oz of water, but they were adament. I never had a problem and I'm glad that they took the time to explain how important it was. From what I know now the important thing is not the location, but the experience of the radiology team with PC patients. Just like surgery, at least 250 procedures are necessary in order to gain expertise in reducing the side affects and effecting a cure. I'm fortunate that the demographics of my area (a lot of old people) give local practioners a lot of experience in dealing with PC patients. If the experience was not locally available I would have travelled. I spend 6 months of the year in Idaho and 6 months in Palm Springs, and there is no way in hell that I would ever get treated locally in Idaho for anything major; there is just no experience base available there, so all my treatments are in Ca even if I have to drive back.
JT
JohnT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

compiler
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Date Joined Nov 2009
Total Posts : 7205
   Posted 4/7/2011 7:58 PM (GMT -6)   
Well, David, I appreciate your support. But my point is that perhaps the top-notch place would have said we want you to drink XXX amount and do this 30 minutes before you are on the table and if at all possible try and report with an empty rectum.
 
In fact, had I not been a participant in HW and some other forums, I might have had no clue about any of that whatsoever.
 
This place may be good, but I believe there are differences.
 
Mel

Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 4/7/2011 8:16 PM (GMT -6)   
then you are second guessing your well thought out decision, what if you had gone to the other place, and the same side effects had taken place, then what would you say?
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 marg
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
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,

BB_Fan
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Date Joined Jan 2010
Total Posts : 1011
   Posted 4/7/2011 8:21 PM (GMT -6)   
Compiler, when I was first diagnosed with PCa I was given a false sense of security from every Dr I saw, from PCP to Uro to surgeon. I stayed local with a good surgeon and surgery went very well. However, I was very distressed to find out that I was actually a G8, not a 3+4 (7). I didn't have second opinions on anything, and decided at that point that if I had to have additional treatment that it was going to be the absolute best that was available. When BCR occurred  I went to Dana Farber 100 miles from home for a second opinion and ultimately SRT. I couldn't work of course. but was able to take the train and avoid driving. I was told to eat a high fiber diet that would induce frequent BM's, and generally had one each morning. Also to drink 16 oz of water 30 mins before SRT treatments. My side effects were minor. I now conitinue to get treated at Dana Farber (HT) and have a consult with Dr Myer annually. Nothing but the best I can reasonably get from now on. BB

F8
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Date Joined Feb 2010
Total Posts : 3804
   Posted 4/7/2011 8:25 PM (GMT -6)   
my radiation clinic never made a big deal of when to drink or crap and i never had any of those side effects that you mention.  i had side effects but they didn't really start till after week three.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

Newporter
Regular Member


Date Joined Sep 2010
Total Posts : 225
   Posted 4/7/2011 8:36 PM (GMT -6)   
My rationale for choosing a "local" guy:

1. Cancer Center has to teach, often time the "Name" only supervise or only do the really critical part like nerve sparing and leave everything else to others.

2. "Name" often spend a lot of their time lecturing and teaching after they are "Name", not sure their skill is still sharp, even though they continue to operate.

The local guy I picked did over a thousand. There were no residents in training at this hospital at the time. He came from and was trained at a Cancer Center. I attended a local prostate cancer support group and met a number of his patients, all happy campers.

With radiation or BCR, on the other hand, I would choose Cancer Center as the equipments are absolutely critical for good outcome. In this case, I believe top notch research institutions are the place to be.
65 Dx June-2010 PSA: 10.7, biopsy: Adenocarcinoma, 1 core Gleason 6, 3 cores atypia; Clinical stage T2; CT, Bone Scan, MRI all negative

8-23-10 Robotic RP; Pathology: Organ confined, negative margins, Lymph nodes, Seminal Vesicle clear; PNI present; multiple Adenocarcinoma sites Gleason 3+3 with tertiary Gleason 4+. Stage: pT2,N0,Mx,R0

Catheter out 8-30-10 no incontinence, no ED. 3/2011 PSA: <.1

compiler
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Date Joined Nov 2009
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   Posted 4/7/2011 8:38 PM (GMT -6)   

If I had it to do over again, I think I would still stay local. That convenience factor is a big one and I think I have resolved some of the early SE issues. My point was that I should not have been the one to figure it all out. The RO should have made some suggestions.

 

Maybe I'm wrong.

This is my 3rd week. I guess some of the other wonderful sE will be awaiting me next week (?)

David, look at the comments about Dana Farber. That's a top-notch place. Look at the clear instructions they provided BB.

I know it sounds like I am second guessing my decision. But as I said I would probably make that same decision. But can you have any doubt that there is a difference between "local" and "best"?

Mel

 

 


Sephie
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Date Joined Jun 2008
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   Posted 4/8/2011 5:23 AM (GMT -6)   
Mel, your post brings up some very good points. Unfortunately, you don't know until it's too late whether or not a doctor or facility is top notch in your particular case. We have all likely heard stories about people who went to major cancer centers for treatment - some were very pleased with their treatment and some were not pleased at all.

When John's PSA came back detectable about 17 months after surgery, I spent days researching experts at Sloan Kettering and Columbia Presbyterian hospitals in New York City. My first conversation with the assistant to a so-called prostate cancer expert at Sloan was an eye-opening experience: I was told flat out that the doctor would need to review his biopsy slides and surgical path report (for a fee, of course). After that, he would meet with us and tell us whether my husband's "case" interested him enough to treat him! I found out that this is common practice at teaching/research hospitals as their funding is determined by how many patients they treat successfully. And this was not the first time I heard of this callousness, as a friend of ours suffering from advanced metastatic breast cancer was turned down by Sloan Kettering because treatment would likely not be successful and would lower their "stats."

For me, top-notch medical care is more than a nationally-recognized name.

davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/8/2011 6:37 AM (GMT -6)   
Sephie said...
Mel, your post brings up some very good points. Unfortunately, you don't know until it's too late whether or not a doctor or facility is top notch in your particular case. We have all likely heard stories about people who went to major cancer centers for treatment - some were very pleased with their treatment and some were not pleased at all.

When John's PSA came back detectable about 17 months after surgery, I spent days researching experts at Sloan Kettering and Columbia Presbyterian hospitals in New York City. My first conversation with the assistant to a so-called prostate cancer expert at Sloan was an eye-opening experience: I was told flat out that the doctor would need to review his biopsy slides and surgical path report (for a fee, of course). After that, he would meet with us and tell us whether my husband's "case" interested him enough to treat him! I found out that this is common practice at teaching/research hospitals as their funding is determined by how many patients they treat successfully. And this was not the first time I heard of this callousness, as a friend of ours suffering from advanced metastatic breast cancer was turned down by Sloan Kettering because treatment would likely not be successful and would lower their "stats."

For me, top-notch medical care is more than a nationally-recognized name.


That's terrible. But it goes to show how everyone has a different experience.

My SIL, who is dying of metastatic breast cancer ( she now has menangitis and unrelated pancreatic cancer ) was taken in by Sloan Kettering 7 years ago after her local place in upstate NY handed her a hospice card. That was 7 years ago. She was was stage 4 from the get go.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/8/2011 7:38 AM (GMT -6)   
Sephie, you made a very good point. Thanks.
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 marg
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
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,

Sephie
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Date Joined Jun 2008
Total Posts : 1804
   Posted 4/8/2011 7:58 AM (GMT -6)   
Davidg, I am sorry to hear about your SIL's situation. I am also glad to hear that she is receiving the best care from what is considered by many to be THE place to go when you have cancer. She is indeed lucky to have connected with an obviously caring medical team who have worked hard for her, and that's as it should be.
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