Next update will be from Mayo

Jan. 9: Mom’s surgery is scheduled for Wednesday, January 11.  Tomorrow morning a bunch of us are heading up for her preoperative appointment.  That’s when she’ll sign lots and lots of forms, and I’ll get to meet her surgeon, Doctor Michael Farnell.

We don’t yet know what time on Wednesday she’ll be scheduled for surgery (I think we find that out on Tuesday night after 8 pm).  I checked with St. Mary’s hospital in Rochester, and they said that I should be able to get internet access in the building.  So my plan is to update this website over the course of the day on the 11th as we have information. However, knowing how quirky technology can be and knowing how things always take longer that you expect at hospitals, don’t assume that there’s a problem if you don’t see a post.

We’re going to have quite a gang at the hospital on Wednesday.  Mom, Dad, Michael, Maretta, Joey, Bryan, Andrew, Maretta’s boyfriend Kyle, Terry, Tom, and perhaps my mom’s cousin Paula.  I want to wish Dr. Farnell a good night’s sleep, a sharp mind, steady hands, and lots of stamina.

Thanks so much for everyone who is thinking of her, and if you want to reach me or would like to request an email when there’s an update, you can email me at adotzour@gmail.com.

Preparing for surgery

Jan 3: One week from today, on Tuesday, January 10, Mom will be at Rochester having her pre-operative appointment with Dr. Michael Farnell.

For so many months, the chance was dim of Mom being able to have surgery to remove her pancreatic tumor.  But now, seemingly quite suddenly, the day of her surgery approaches.  So I’ve been trying to learn more about the Whipple Procedure in order to know what to expect.

During the Whipple Procedure, also called a pancreaticoduodenectomy Mom will have many pieces of her lower digestive tract removed: the head of the pancreas, possibly the spleen, her gall bladder, bile ducts, part of her upper intestine including the duodenum, and a portion of the lower stomach. Here’s a diagram of the pre- and post- operative anatomy.  I also found some historical information on the Whipple Procedure on the Wikipedia.

Once she is in surgery, the first thing Dr. Farnell will do is to do a laparoscopy to see if the cancer has spread.  If it has, she won’t have the surgery.  If Dr. Farnell doesn’t see any signs of spreading, he will begin the Whipple procedure.  As he moves forward with the Whipple procedure, there are several points at which he can stop if he determines that he won’t be able to remove 100% of the tumor.  So Mom won’t know until she wakes up whether the surgeons are able to do the complete Whipple.  It still seems so weird to be hoping that they can do the most complete, aggressive version of this operation.

Mom is expecting to be at Mayo for about 14 days after surgery (at least, that’s the average post-operative hospital stay).  She’ll probably have a good couple months of general recovery time.  Here’s a nice website that describes the surgery for patients.

Mom’s surgery is scheduled!

Dec. 30:  Wonderful news!  Mom’s surgery is scheduled for Wednesday, January 11 at the Mayo clinic in Rochester.  Dr. Farnell will be performing the surgery.  Not only is it scheduled, but she also got approval that her health insurance will cover it.  Thank heavens!  Mom will have her entourage (I think there will be about nine of us) on the 11th at Mayo.  The time for the Whipple Procedure has come!

Mom’s a go for surgery!!

Dec. 19:  We just got some amazing news…Mom is scheduled for surgery with Dr. Farnell at Mayo the week of January 9.  They’re going to try to get that tumor out of there!

Mom talked to the doctor who reviewed her endoscopic ultrasound today, and he had two major points to convey: 1) the test didn’t show anything that made them think that surgery was out of the question and 2) although they ran a set of biopsies on the tumor and on lymph nodes and  they didn’t find any cancer cells.
This means that she gets to have the Whipple Procedure (the surgery they do to remove the tumor) and there is a 4-5% chance that what she has is not cancer at all.  Here’s Mayo’s website discussing the alternative types of tumors it could be.  She was diagnosed with mucinous adenocarcinoma. Apparently it is very hard to prove a negative bioposy, and what she has is acting like cancer, but it’s kind of amazing news.
The doctor ended the conversation telling her to have an optimistic Christmas:)

As far as I can tell at this point, the surgery Mom will have in January can be broken down into several steps.  At each point, Dr. Farnell has the option of stopping the procedure and sewing her back up if they find conditions that they don’t like.  The first thing they are going to do is a laparoscopy.  She had one of these on June 9 to see if the tumor had spread, and before they go in to remove the tumor on the pancreas, they are going to do another laparoscopy to make sure it hasn’t spread to other parts of the abdomen.  If they see evidence that it has spread, they won’t even start the Whipple Procedure.  However, if the laparoscopy doesn’t see any metastatic spread, they’ll do the Whipple.  The re-plumbing of Mom’s digestive system.  Here’s a good diagram showing “before” and “after”  from Mayo’s website.

Here’s some information on the Whipple Procedure

We still have quite a few bridges to cross before we can say we’ve had a successful surgery, but this is so much better than the news we were getting throughout November.  What a Christmas gift!
Enjoy the holidays:)
~Althea

Waiting on Mayo test results

Dec. 17  I’m sorry I haven’t updated this earlier if you’ve been anxious to hear the latest news about Mom.  I keep thinking we’ll know something more soon, but each appointment leads to more appointments.  Mom and Dad went up to Rochester, MN to Mayo clinic on Dec. 8 for an appointment with Dr. Farnell.
The appointment was originally scheduled for Monday, Dec. 5, but her records (and therefore the appointment) got delayed.  Dr. Farnell’s assessment was a positive one.  He thinks she’s too young to have this disease, and he wasn’t as worried about the relationship of the tumor to the SMV.  Dr. Farnell thought the fine-grained CT scan was well done but wanted to re-run the endoscopic ultrasound at Mayo.  So on Thursday, Dec. 15, Mom, Andrew, and I went up to Mayo for that test and a re-biopsy of the tumor.  Mayo is an amazing facility.  I didn’t take any photos while I was there (hands were full of baby), but here’s a neat website that shows some great images.
Mom’s endoscopic ultrasound went fine, but she didn’t get out of recovery until after all the people involved in the test had already left for the day.  Sooo, we’re waiting to hear back from them.  Surgery is still an option at this point.  We should
hear on Monday or Tuesday…
~Althea

The land of many doctor appointments

Nov. 29: Mom has had a record number of doctor appointments over the last few weeks.  We have a horde of seven of us attending them (Mom, Dad, Mom’s cousin Paula, Michael, Joey, me, and Andrew), and we are starting to get assigned seats as we cram in to the doctor’s office:)
I don’t think Mom’s tumor read the part of the book where it shrinks and goes away.  It’s being far too obstreperous, and I wish there was a way to punish it.  Our meeting with Mom’s surgeon, Dr. Matzke, yesterday wasn’t a positive one.  When we met with him last week, after the fine-sliced CT scan, he said he didn’t think that the tumor was resectable (removable), but he wanted to do an endoscopic ultrasound to see if he could get a better view or find anything that showed that surgery was a good option.  We were frustrated to hear that the ultrasound showed that the tumor is pushing on a
significant portion of the Superior Mesenteric Vein (SMV) and has actually invaded a portion of the vein.  In Dr. Matzke’s opinion, the extent of the involvement of the tumor to the SMV leads him to believe that it is not operable.

We’re still getting two more opinions.  On Friday, we’re going back to Dr. Sharon Webber at the UW Hospital, and on Monday, Dec. 5, Mom has an appointment with Dr. Mike Farnell
at the Rochester Mayo Clinic.  Dr. Matzke said that if anyone in
the country could remove the tumor, it would be Dr. Farnell.  The surgery Mom would like to have (that sounds so odd) is called the Whipple procedure.  Here’s a good website that describes it.

If doctors Webber and Farnell also find that Mom’s tumor is inoperable, she’ll be looking at chemotherapy treatments to control the tumor and to try to prevent it from spreading.  I believe Mom is trying to make an appointment with an oncologist while we’re up at Mayo to get another opinion on the next best tactics for chemotherapy.

So that’s the update this week.  Mom’s in quite a state of limbo…not knowing if she’ll be in surgery soon or now, but as she’s been through this whole mind-numbing experience, her same, wonderful mommy-self.  We had a lovely Thanksgiving and trip down to Chicago, and we appreciate every day.
~ Althea

Mom’s got an endoscopic ultrasound scheduled

Nov. 17:  We met with Mom’s surgeon, Dr. Matzke, this morning to review the results of her most recent, finer sliced, ultrasound.  At this point, Dr. Matzke doesn’t think that the tumor can be removed.  However, she’s right on the borderline of resectability, so he wants her to get an endoscopic ultrasound to see if he can get a better view of the relationship of the Superior Mesenteric Vein (SMV) to the tumor.  She has that procedure scheduled for Tuesday, Nov. 22 at the University Hospital.  Our next meeting with Dr. Matzke is on Monday, Nov. 28.

Dr. Matzke couldn’t tell from the scan if the vein is invaded by the tumor.  It appears to be wrapped more than 50% around the vein, and it’s unclear from the scan if there’s a fat plane between the vein and the tumor that could be used for resection.
On a positive note, Dr. Matske found that the vein is not clotted, one of the concerns he raised last week.  There is quite a bit of corollary vein development (tiny veins that Mom’s body has created to compensate for the SMV), which worries him.
Mom will go under general anesthesia for the endoscopic ultrasound, and they’ll be looking to see if they can get a better picture of the tumor/SMV area.  At this point, from the CAT scan images, Dr. Matzke said he wouldn’t do the surgery.  So in reviewing the results from the endoscopic ultrasound, he’ll be looking to see if he gets a prettier picture.
Dr. Matzke trained at the Rochester Mayo clinic, and he recommended that we get a second opinion from Dr. Mike Farnell, who he said is probably the best pancreatic surgeon in the country.  Dr. Farnell does around 15 Whipple procedures each month.
We’re also planning on going back to Dr. Sharon Webber at the UW Hospital to get a third opinion.  Those appointments will probably take place in early December.
That’s the update for now.  Surgery to remove the tumor isn’t a clear option, but it hasn’t yet been ruled out.

Mom’s surgeon was less positive about surgery…more tests are needed

Nov. 10: Mom (and her entourage) met with Dean Care’s new pancreatic surgeon, Dr. Matzke, today to review her recent CAT scan and to get his take on whether the chemo and radiation treatments that Mom went through last summer have shrunk the tumor enough that it is resectable (removable).  If you recall, back in early June, the surgeons decided that the tumor wasn’t operable because it was surrounding the Superior Mesenteric Vein (SMV).

When we met with Mom’s oncologist, Dr. Diggs, on Tuesday, he looked at her most recent CT scans and thought that the tumor had shrunk by about 30%.  He did, however, caution us that the surgeon would need to be the one to really provide a more accurate description of the tumor size and change in relation to other organs.  We left that meeting somewhat hopeful, yet trepidatious about what today’s meeting would hold.

Unfortunately, after reviewing the CAT scans, Mom’s surgeon, Dr. Matzke, said he was a little discouraged at the tumor’s response to the treatments.  In terms of size, he said that the tumor was about the same as it was in earlier scans.  He wants to do a CAT scan with a 2 mm slices of the pancreas area to get a better sense for the relationship of the tumor to the SMV.  The CAT scan mom had done on Tuesday had 5 mm slices.  To review how CAT scans work, see this website.
From the information he had from this rougher-scaled CAT scan, Dr. Matzke was concerned that it looks like the tumor’s relation to the SVM has increased since earlier scans.  It appears that the tumor is wrapped about fifty percent of the way around the SMV.  This leads him to the following questions:

  • Has the tumor invaded the SMV?
  • Is the SMV open?
  • Is there a clot in the SMV? (It looks like collateral veins to the SMV have grown in size…perhaps to compensate for the SMV not flowing unimpeded…)
  • How far around the SMV has the tumor grown, and is there a fat plane between the SVM and the tumor for resection?

So here’s the plan for the next couple weeks:

A) Mom has a CAT scan with a 2 mm slice of the pancreas scheduled for next Tuesday at St. Mary’s Hospital.  Dr. Matzke will review the scans with the radiologist to try to answer some of the questions he posed above.  We meet with him again on Thursday, November 10.

B) If the results of the finer-scaled CAT scan do not rule out surgery, Mom will have an endoscopic ultrasound performed at the University Hospital On Monday or Tuesday, Nov. 21 or
22.  The aim is to look for reasons why the Whipple procedure (the surgery Mom could have to remove the tumor) could not be performed.

If both these tests show Mom to be a good candidate for the Whipple procedure, she’ll probably be looking at having the surgery in early December.  We’ll probably also go back to the UW Hospital surgeon we talked to in the spring to get her opinion on the results of these tests.  I recently found a nice website that talks about the surgical considerations for pancreatic cancer.  It has sections on the relation of blood vessles to the tumor and how surgeons decide if resection is possible.

But one step at a time.  Today, we’re all feeling rather deflated as I know we went into this meeting hoping Mom would be a clear candidate for surgery.  This is teaching us patience and how to maintain a sense of inner calm amongst the storm.

The next update will probably be next Thursday.

~ Althea

PS  I should really make a note here that through this all, Mom has been so amazing.  She’s got an amazingly positive attitude.  She said yesterday that she thought that this was harder on all of us than it is on her.  I’m learning a lot about appreciating each day, each interaction.  We have such a great family.

Nov. 8: Cautiously optimistic

After several anxious weeks, Mom went in this morning for a cat-scan to see how effective the summer’s chemo and radiation treatments were.  Dr. Diggs, her oncologist, reviewed the cat scans, and he said that while the May cat scans showed the size of the tumor to be 5.5 cm by 5.5 cm, the current cat scan showed that it has shrunk to 4.3 cm by 2.2 cm.  That’s about 30%!  He’s not sure if it has shrunk enough to be operated on, but we’ll find that out when we meet with her surgeon on Thursday morning.  For now, the possibility for surgery is still open!

The illustration below shows the difference:maytumorsize.jpg

novtumorsize.jpg

Chemo and Radiation are done!

October 18: I’m happy to report that Mom’s chemotherapy and radiation treatments ended last Wednesday (the 12th), and she’s now done for at least the next three weeks.  Her body will get a good hiatus to rest and recuperate, and hopefully she’ll be feeling better and better.  The chest pain problems she was having have begun to subside.  It sounded pretty painful, but the doctors ran all sorts of scans and couldn’t find anything wrong with her.  So we’re guessing that the pain could be related to the fact that her chemo port is in her upper chest and maybe having continuous infusion of nasty drugs for six weeks irritated blood vessels in her upper chest.
As of Monday, Mom said that she is still experiencing some nausea and malaise, and she is sticking pretty close to home.
The next step (after three more weeks of recovery) is to get a CAT Scan on November 8.   Check out this site for a fun explanation of how CAT scans work.  On the 8th, they’ll be looking to see how much the tumor has changed.  Our fervent hope is that the treatments that were so hard on Mom’s systems were also really hard on the tumor and it has shrunk to the point that it is removable with surgery.  As a reminder, the primary reason that the tumor could not be removed in June was because it  involves about three centimeters of the superior mesenteric vein.  Here’s a site that talks about the Whipple Procedure, the surgery Mom will have if the tumor has shrunk enough that it is not surrounding her superior mesenteric vein.  Here’s a 9-page PDF for those who really want to learn more about the surgery.  The superior mesenteric vein drains blood from the small intestine, and because it is such a vital and delicate vein, it is very difficult to operate on.   Hence, we really want the tumor to BACK AWAY from the vein.
So that’s the current update.  Should be quiet for a while!
~Althea