Bad news...Good news...I think

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Regular Member

Date Joined Jul 2015
Total Posts : 87
   Posted 8/19/2016 3:33 PM (GMT -6)   
Hey everyone. As I posted in ML's latest thread, I haven't been around here lately and to quote ML, it's been a bummer summer (and spring).
Treated for diverticulitis x2... Symptoms started on March 7.

Nausea, food intolerance, abdominal cramping, intermittent loose stools and about a 20 pound weight loss in about 5 weeks time. CT in late March (after tx with Flagyl, Ciprofloxacin and then changed to Augmentin as I had a probable allergic rxt. to the cipro and had to stop it after 2 days)...CT showed diverticulosis...particularly in the descending colon and sigmoid.
No diverticulitis...but then, I was just treated for it.

Also showed what looked like a couple cysts in left kidney and an approx. 1 cm lesion of low attenuation in the tail of the pancreas...appearing cystic, but no previous scans for comparison.

Same symptoms continued...nausea 24/7 and food intolerance just horrible.
Made appt with my GI/hepatologist and somehow the office goofed and I saw his PA.
Nothing against her...she took great care of me after I started my hep c tx.
She doubled up on antibiotics (14 days) thinking I never cleared the diverticulitis...certainly not an unreasonable intervention.

Anyway, my symptoms continued to worsen and the 20 lb. weight loss which had stabilized for a number of weeks also began a total of 30 lbs...
Starting weight was 200lbs.
Honestly, I'm healthier at 180...probably ideal for me at 67 yo and 6'2"...just a really crappy way to lose it.

I insisted on another CT...again nothing as a stable scan and showed "redemonstration" of the pancreatic tail lesion.
Finally got in to see my GI doc (fantastic clinician and a wonderful human being).
I described my symptoms and showed him the CT reports.
(I don't know why he didn't see either CT previously, but nothing is perfect in this life, plus this man is probably responsible for saving my life...if it's to be saved...and it looks good for me right now)
He immediately noted the pancreatic lesion and said "I don't believe this is diverticulitis".

Aug 10...had an endoscopy, esophageal ultrasound and biopsies of the pancreatic tail lesion.
Came back as a neuro endocrine tumor (NET) and malignant.
After 40 years as a nurse anesthetist and many years in the ER...well...I've never heard of an NET. My daughter (surgical resident...only a bit over a year out of med school) said she was told she'll never see one in her practice. Pretty rare bird.

I'm told these tumors cause lots of problems (release of large amounts of hormones). The good news is my GI said mine is totally fixable...looks 1.4-1.5 cm at most, discrete (no spread) lymph node involvement.
Said this will require a distal pancreatectomy/splenectomy.

The pathology/cytology report shows positive markers x3 for neural cells other tissue. It was negative for epithelial no adenocarcinoma.
My daughter said this is great news and bodes a really good prognosis.

My son (nurse anesthetist) at Lahey Hospital and Transplant Center (Burlington-Boston) called in favors...hooked me up with the best (one of the best on anyone's list) transplant surgeons (liver) in Boston...and who also specializes in pancreatic tumors. My son also hooked me up with his favorite anesthesiologist...he claims one of the 2 best out of 37. His 2nd choice agreed to be "backup"...hahaha.

Anyway, will have my consult on Aug 29 with my surgeon and oncologist and I'm already booked for surgery 4 days later on Sept 1. Looks like approx 7 day stay in the guess anyway. Hopefully headed back home on Sept 25...wife already bought my ticket home...gotta love that woman.

Keeping fingers X'd and I'll have my fantastic family...wife, son and daughter with me in Boston. My daughter will have to make up some residency hours, but not too bad. They told her "whatever you need". Right now she's planning on Aug 24-Sept 3 in Boston.

Anyway, will post back with any news.

Still Hep c free (undetected) almost 3 years now!

Thanks for letting me vent...and thanks for letting me run on...and

Hope everyone is doing well..or at least ok.

Post Edited (woofer5) : 8/19/2016 9:26:37 PM (GMT-6)

ppm guy
Veteran Member

Date Joined Apr 2010
Total Posts : 1209
   Posted 8/20/2016 1:33 PM (GMT -6)   
good to hear from you Woofer5,
wow!!! now I understand your " good news/bad news".. well, the good news is all that matters. It is operable. does that mean you will have a portion of the pancreas and spleen removed?? Wishing you all the best for your surgery..

2016 has been rough for me too.. I had a 4 level cervical laminectomy in march.. during surgery I kept going into A-FIB/RVR. Dr scheculed next available pacemaker implant. Im breathing easier now and fusion worked.

Its been quiet here.. with hep c treatment becoming easier to manage.

stay in touch Woof, you got this

Regular Member

Date Joined Jul 2015
Total Posts : 87
   Posted 8/21/2016 10:24 AM (GMT -6)   
Thanks ppm guy...really appreciate your reply...packed with wisdom and good thoughts as always.

So sorry to hear you've been through the meat grinder again, but it sounds like the cervical lami (Yikes!...4 levels) was successful.
Are you in much pain now?

Man, being short of breath with rapid A Fib is freakin horrible. I've seen it too many times in the ER.
Usually, meds first (chemical cardioversion), then electricity (electrical cardioversion)
Sounds like those didn't work?
So did they slow you down with a drug like metoprolol (lopressor) and then opt for an interventionist to do an ablation and pacemaker?

In any case, you should feel like a new man with the pacer.
Ultimately, good news!

Yeah, my pancreatic lesion (NET) is way out at the tail and seems to be discrete. My understanding is most distal pancreatectomies involve a's attached and it's a big sac of blood that's in the way and a potential problem during surgery.
My GI had a helluva time doing the biopsies. Initially, once he got in there he thought the lesion might be splenic, but he was finally able to finesse a narrow window past a splenic vessel and get the needle into the pancreas.

My surgeon, of course, will make the decision once he's there...and likely will tell me before. Honestly, I say take the spleen out. If it's that close to the cancer...I don't want the chance of the cancer reseeding due to the spleen should cancer cells be lurking there.

Hell, at 67 yo, it just means a few more vaccinations for

Good to hear from you and post back with any news.
When are you likely to get the pacer?

ppm guy
Veteran Member

Date Joined Apr 2010
Total Posts : 1209
   Posted 8/21/2016 8:54 PM (GMT -6)   
hey Woofer,
my pcp ordered a 24hr holter monitor , back in May. during that period, my heart rate fluctuated between 140 and 30, with a sinus rythme of 40(bradycardia). cardiologist who read the monitor results, called it a"sick sinus" and scheduled pacemaker implant the next day. im just starting to feel better.

I Keep thinking to myself, that all the years of hep c treatment did a number on my health. 3 years of peg/riba, and then throw in 3 months of incivek. BARF!!!! I still think the CIA should inject terrorists with peg/riba/incivek, and they will tell all..

I googled a picture of the tail of the pancreas and the spleen. Gives the novice a good idea. Is laproscopic surgery a possibility? This might be a dumb question but is the tumor attached to the spleen also?
drop a note when possible

Regular Member

Date Joined Jul 2015
Total Posts : 87
   Posted 8/22/2016 4:39 PM (GMT -6)   
Hey ppm,

Aha...sick sinus syndrome. Yeah, I don't think I've ever come across an "SSS" patient that didn't end up with a pacer, although I'm sure they're out there. Man, too fast and too slow...that had to suck.
Really happy to hear you're starting to feel better.

LM*O at Incivek Triple Therapy for interrogations of terrorists. Excellent idea!
What a miserable 24 week therapy (2013) that was for me...but hey, it worked! No complaints here. Thank heaven the Incivek was only for the first 12 weeks. I still recall vividly...having to chug down 2 TBS of coconut oil (when I just couldn't eat...let alone 20 grams of fat) every 8 hours before that awful Incivek.

There are a number of surgeons that will do these distal pancreatectomies laparoscopically, but not mine.
I'm told that he just doesn't feel he can adequately explore and examine the lymph nodes and any associated structures laparoscopically. Just doesn't have the exposure he wants.
I'm also told he does a "mini-laparotomy" so it's a smaller incision, but a cut is still a cut and not a trocar puncture.

Sure...I was hoping it'd be laparoscopic, but I want the best shot I can get. I'm told he's the best transplant surgeon around Boston and he's a nice guy to boot.
Hell, I bought my ticket and I'm buckled up for the whole

I don't believe there's any evidence of tumor spread any where including the pancreas and spleen...CT x 2 (oral and IV contrast), an endoscopy, EUS (endoscopic ultrasound) and the tumor biopsies, but again, my GI didn't see anything to indicate spread. Still the pancreas and spleen are attached...shared circulation. I'm pretty sure my spleen is gonna be history, but I should find out when I meet my surgeon and oncologist on Monday...Aug 29.

Of course, you never really know where you stand until your surgeon has "hands and eyes on" and the margins come back from pathology as clear. Thankfully, I'll be sleeping during all this.
Waiting, as we all know, totally sucks.

Thanks again for your friendship here...and your sage advice.
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