Best in Boston - MGH or Dana Farber

19 Posts | Page(s): 1 2  Next 

Best in Boston - MGH or Dana Farber

by jimne on Tue Jan 15, 2013 04:15 PM

Quote | Reply

My dad is in the middle of diagnosis and needs a biopsy possibly followed by Whipple procedure.  PET scan found a 1.2 cm mass "findings consistant with a malignant pancreatic neoplasm". He lives in Florida but has immediate family in Boston.  He is considering Dana Farber and MGH.  Any firsthand experience?  Where would you go?  John Hopkins is also a possibllity with relatives but no immediate family living in Baltimore.

RE: Best in Boston - MGH or Dana Farber

by cboots42 on Wed Jan 16, 2013 06:52 AM

Quote | Reply

I just went through this for my mother last month.  I have a Ph.D in molecular biology and have been in academic/industry research for years and called in on my network to find the best doctors at both institutions.  My verdict was that we couldn't go wrong either way; both are high volume surgical centers for the Whipple and have phenomenal access to clinical trials due to their research nature.  I spoke with a GI oncologist at MSKCC and he confirmed the verdict.  We ended up at MGH, mostly due to scheduling reasons (we got in there first, and as I'm sure you can understand were eager to get underway).  Since you don't live in the area, I would meet with teams at both places when you come up and choose whichever you are most comfortable with.  "Liking" the team personally was huge for my mom. 

If he is borderline resectable, he may be eligible for this clinical trial at MGH: http://clinicaltrials.gov/show/NCT01591733

One of the advantages is the access to proton therapy radiation, which causes less damage to healthy tissues compared to standard therapy. 

Sorry you are dealing with this, fortunately it sounds like they caught it early.

RE: Best in Boston - MGH or Dana Farber

by jimne on Thu Jan 17, 2013 01:18 AM

Quote | Reply

On Jan 16, 2013 6:52 AM cboots42 wrote:

I just went through this for my mother last month.  I have a Ph.D in molecular biology and have been in academic/industry research for years and called in on my network to find the best doctors at both institutions.  My verdict was that we couldn't go wrong either way; both are high volume surgical centers for the Whipple and have phenomenal access to clinical trials due to their research nature.  I spoke with a GI oncologist at MSKCC and he confirmed the verdict.  We ended up at MGH, mostly due to scheduling reasons (we got in there first, and as I'm sure you can understand were eager to get underway).  Since you don't live in the area, I would meet with teams at both places when you come up and choose whichever you are most comfortable with.  "Liking" the team personally was huge for my mom. 

If he is borderline resectable, he may be eligible for this clinical trial at MGH: http://clinicaltrials.gov/show/NCT01591733 "" target="_blank" rel="nofollow">http://clinicaltrials.gov/show/NCT01591733 " target="_blank" rel="nofollow">http://clinicaltrials.gov/show/NCT01591733

One of the advantages is the access to proton therapy radiation, which causes less damage to healthy tissues compared to standard therapy. 

Sorry you are dealing with this, fortunately it sounds like they caught it early.

Thank youcboots42. 

Who was your surgeon at MGH and how did you find him/her?  Time is of the essence and we were lucky to get an appointment for a consult at DF on Friday (which they require before a biopsy).  I would like to schedule an appointment at MGH as well.

RE: Best in Boston - MGH or Dana Farber

by cboots42 on Thu Jan 17, 2013 12:20 PM

Quote | Reply

Hi there,

I found the general appointment lines were surprisingly effective for both DFCI and MGH actually!

MGH: 877-726-5130

Try that - hopefully if you tell them that you are from out of town and will be in the area for a consult for only a short time they can help accomodate you.  At MGH you work with a tumor board consisting of a surgeon, radiation oncologist and medical oncologist.  I don't know how often these panels are set up - we met ours on a Thursday.  It might help to tell them that your Dad could potentially be a clinical trial option for one that Dr. Ted Hong is running.  Even if it isn't an appropriate fit, appealing to a physician's research interests is never a bad way to get their attention. 

On that, you could even try calling his office directly.

Ted Hong, MD - Director Gastrointestinal Service, Department of Radiation Oncology

617-724-1159
This part is tricky, since you have to deal with administration...I found most people very helpful though.  I'll PM you as well. 

RE: Best in Boston - MGH or Dana Farber

by Whippleschmiple on Sun Jan 20, 2013 07:47 PM

Quote | Reply

I live in NH, used to live in Mass, had a related type of cancer (ampullary) and used to go to pancreatic/biliary ca support group and know patients with both.  I had my treatment at NCI center in NH (Norris Cotton Ca Center at Dartmouth) which has had success with neoadjuvant treatment which is now used at sloan kettering and MDAnderson, meaning chemo, maybe radiation PRIOR to whipple which can increase survival odds and some patients more likely to go onto whipple.  I would hands down recommend team here but Boston may have top choices too.  Only negative at Dana Farber was a friend chose not to go there (personality stuff), and I in fact got my second opinion at Mass. General but not thinking either ever does neoadjuvant but maybe they do now.  I went through treatment/surgery starting 2 1/2 yrs ago and am well.  It was early but aggressive with a number of high risk features.  Even though his mass is very small, 1) needs treatment and, or surgery very fast as these can get out of control fast, 2) needs second opinion fast too.  Good Luck!!  I met a 5 yr survivor in 80s, know a 3 yr survivor, a 15 yr survivor of pancreatic,...  Aggressive treatment in top facility with doc with great experience with whipple,....  If had surgery in Fla, Moffit center northeast area may be only place possible.  I know a long-term ampullary survivor that had whipple there.    

RE: Best in Boston - MGH or Dana Farber

by Whippleschmiple on Sun Jan 20, 2013 07:49 PM

Quote | Reply

added note, if go to mass. general, ask if ever consider neoadjuvant treatment.  people have posted positive experience whipples there too.  I used to go there for other care.  A 3 yr survivor now gets follow up there and they were the ones who told me do more treatment when protocol didn't at time recommend it for ampullary ca and that is a factor in my survival. 

RE: Best in Boston - MGH or Dana Farber

by cboots42 on Sun Jan 20, 2013 07:59 PM

Quote | Reply

They definitely do - and seem to be in agreement with MD Anderson on the advantages of neoadjuvant therapy before the Whipple.  Our surgeon specifically noted that it will improve his chances of an R0, and we know that's correlated with overal survival.  My mom will do 4 cycles of FOLFIRINOX and proton therapy instead of standard radiation before surgery.

Glad you are doing well 2.5 years out!  It's so encouraging to hear that. 

RE: Best in Boston - MGH or Dana Farber

by Whippleschmiple on Sun Jan 20, 2013 08:16 PM

Quote | Reply

I know others like myself doing well years after whipple and they had additional treatment and the whipple.  I used to listen at the support group meeting to patients with pancreatic cancer who had neoadjuvant treatment and how it shrunk a lot prior, and sometimes made them a whipple candidate when borderline before.  The periampullary cancers (pancreatic, biliary, ampullary and duodenal) need aggressive and quick treatment in top doc hands at top facility.  I knew MGH had a proton beam.  I had targeted radiation with chemo sensitizers and 6 cycles of chemo after as they originally dealing with an early ampullary thought I was likely home-free until pathology report showed aggressive nature and two ways it was trying to spread.  I had clean nodes and clean RO margin though not sure if that is totally accurate considering I had perineural invasion (in nerves around tumor) and lymphatic invasion (not in nodes but in lymph trying to get to them.)  We all also need to realized numbers are numbers and if we feel we can beat it and do everything possible our odds are so much better.  I changed diet, exercise a lot,...  I seriously wonder about everything from meats/dairy and even sugar in diet.  Also some patients go on to have normal body weight, but it takes some work.  Folforinox is often the standard now.  After whipple, walking around is good idea.  Keep weight up as much as possible before surgery and right after.  I did do greek yogurt after as protein good healing, but later went to alternatives to dairy.  I find coconut milk products (milk, yogurt, frozen treats) easier to digest as I had one complication after whipple for which treatment was medium chain fatty acids formula and coconut milk is high in them plus bypasses liver for digestion.  Probiotics a good choice longterm and post whipple seems to helps some with gas.  Most around whipple and radiation need prilosec/omeprazole with or without enzymes to protect structures excess acid.  Later I was unusually lucky to be able to slowerly taper off both.  

RE: Best in Boston - MGH or Dana Farber

by cboots42 on Tue Jan 22, 2013 05:16 PM

Quote | Reply

Thanks so much for all of the good advice, I haven't started thinking about the particulars of the Whipple yet but we all do know it's very likely to change how and what my mother eats.  We keep encouraging her to gain as much as possible now, but with the chemo it's been a challenge.  My mother absolutely loves her meat/dairy/sugar but I have been trying to get her the occasional meal from a fantastic vegan restaurant in my neighborhood (which she likes!).

Completely agreed that the periampullary cancers require swift and aggressive treatment.  We feel very fortunate to live in an area where it's convenient to receive top-notch care.  Having to travel is a very legitimate additional stress. I'm trying to do some digging now on exactly how useful radiotherapy is for PC (not that we'd change anything, I'd just like to know and it seems somewhat controversial).

How long after the Whipple did it take for you to recover back to your "old self", if that's possible?  Have you had any chemo since those 6 post-surgery cycles? I think even in the cleanest of resections more chemo isn't a bad idea given the aggressive nature of a lot of these cancers. 

RE: Best in Boston - MGH or Dana Farber

by shelby1 on Tue Jan 22, 2013 11:18 PM

Quote | Reply

Is proton therapy really better than Cyberknife? Where is it used for recurrent pancreatic/metastatic cancer?

19 Posts | Page(s): 1 2  Next 
Subscribe to this message board discussion

Latest Messages

View More

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.