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Sarah Bennett survived neuroendocrine | Whipple procedure | duodenum | endoscopy | oral chemotherapy


DESCRIPTION


After experiencing gastrointestinal issues in 2022, it took a total of four visits to ERs and an urgent care before a CT scan revealed Sarah Bennett had a mass in her duodenum, near her pancreas.  The mass later led to a diagnosis of a rare cancer, neuroendocrine.  She did not have to undergo a Whipple procedure, but did have to take an oral form of chemotherapy.  That preceded a successful surgical removal of the mass.  Sarah achieved survivorship and said her health is very close to what it was before her diagnosis.

 

In 2022, Sarah Bennett moved from her hometown of Salem, Oregon to Excelsior, Minnesota.  Not long after her arrival, she began to experience severe diarrhea and vomiting.  She visited an ER and was told she just had gastrointestinal issues and was given some anti-nausea meds.  However, Sarah could not keep anything down, be it food or fluid.

 

She returned for a third visit to the ER and underwent a CT scan.  That’s when we found there was a mass pushing on the duodenum, which is the beginning of the small intestine, connected to the stomach and right behind the pancreas.  They performed an endoscopy with a biopsy, and from that she learned that I had cancer.  It was neuroendocrine cancer.  I had twelve days of vomiting and diarrhea before I finally got any answers.

 

Sarah knew nothing about what with which she had been diagnosed, but learned the neuroendocrine cells are all over the body.  They have similar traits to nerve cells as well as hormone-producing cells.  The tumors can occur anywhere in the body.  The most common locations are in the lungs, appendix, small intestine, rectum and in my case, pancreas.  So, it varies, and the neuroendocrine tumors produce excess hormones in a neuroendocrine tumor; or these tumors release hormones and so that is a non-functional neuroendocrine tumor.

 

Sarah Bennett was living in Minnesota, but her health insurance was only good in Oregon, so that is where she went for treatment of her cancer. She said she had multiple treatment options.  With the tumor that we discovered behind the pancreas, it was about the size of a lemon at that time.  She was told what her options were.  They could do surgery based on the location of the tumor, but there are some complications that come along with surgery.  Then we talked about doing chemotherapy, and for the type of cancer she had, they had the new pill form of chemotherapy, and she opted for that.  So, I was taking two types of oral chemotherapy for two weeks, then two weeks off while they waited to see if the pills were effective. 

 

Sarah didn’t lose her hair, but even with the oral form of chemotherapy, there were nasty side effects, including severe cramps in her chest and back.  However, a major plus with this type of chemotherapy was that it allowed her to return to Minnesota to be with her husband and daughter.  She was also able to seen by specialists in Minnesota. 

 

Ultimately, she would have to return to Oregon to undergo surgery. Due to where her tumor was, if they were unable to dissect it from the end of my pancreas, they would have to do a Whipple Procedure and that entails removing the head of the pancreas and then having to reconnect everything to the pancreas, so the pancreatic juices and enzymes didn’t end up eating her in the process.  That was hard because the pancreas is like a sponge, they poke holes in it, and it leaks.  They didn’t want to deal with that, so she was spared going through a Whipple Procedure.  Thankfully, the surgery was a success. 

 

Sarah Bennett achieved survivorship, and makes periodic followup visits to specialists in Minnesota.  She does have the occasional bouts of fatigue, but she says other than that, her health is very close to what it was before her diagnosis, allowing her to be an active wife and mother.


TRANSCRIPTION


Bruce Morton: Being diagnosed with cancer is tough enough, but being diagnosed with a rare cancer is often tougher.  This is the Cancer Interviews podcast, and I’m your host, Bruce Morton.  Our guest on this episode is Sarah Bennett of Excelsior, Minnesota.  She was diagnosed with neuroendocrine, and with that diagnosis came all the additional obstacles tied to rare cancers.  But she has survived, and we are ready to hear her story.  Sarah, welcome to Cancers Interviews.

 

Sarah Bennett: Thank you for having me, Bruce

 

BM: Sarah, we always like to start out the same way, and that is to learn a bit more about you and your life exclusive of cancer.  So, tell us about where you are from, what you do for work, and what you do for fun.

 

SB: Well, originally I am from Salem, Oregon and in 2022, I ended up moving out here to Minnesota for my daughter who is now six years old to have a better education.  I really don’t do anything for work right now, I am a stay-at-home mom.  I like to crochet, and I enjoy going to antique tractor shows.

 

BM: As for your cancer journey, all of us who survived had that point in time, in which our health became abnormal, and things went from bad to worse.  What was that point like for you?

 

SB: That would be around October of 2022.  I am not exactly sure what triggered it or why.  I began to get sick with diarrhea and did a lot of vomiting.  Anything I consumed went right through me or came back up.  I couldn’t function at that point. 

 

BM: And I suspect at that point you sought medical attention.

 

SB: I did.  I ended up going to the ER, thinking I had food poisoning, and I just needed something for the nausea so I could get some sleep and get through the night because I had to work the next day.  They gave me prescriptions and all that kind of stuff, but I tried to go to work, and my co-workers said I looked like garbage, not even 50 percent.  Then I thought I cannot go on like this, so I went to a different ER here in Minnesota, and I wanted to know what was going on.  They gave me more anti-nausea meds, some IV fluid and they ran a couple blood tests.  They concluded I just had gastrointestinal issues, and said I should just go home and drink a lot of fluids.  So, I went home, a couple days went by, and I next went to an urgent care because I was extremely dehydrated still and dealing with these awful stomach cramps.  Anything I ate or drank just came right back out.  I could not drink water, couldn’t drink Gatorade, I couldn’t eat apple sauce or soup.  At urgent care, they said they would just run some more tests to make sure there was nothing with my intestines.  They saw my potassium was low, so they gave me some more anti-nausea meds.  They said if the symptoms continue to go to the ER.  I ended up going to the ER for a third time before undergoing additional tests.  This time I underwent a CT scan.  That’s when we found there was a mass pushing on the duodenum, which is the beginning of the small intestine, connected to the stomach and right behind the pancreas.  They performed an endoscopy with a biopsy, and from that I learned that I had cancer.  It was neuroendocrine cancer.  I had twelve days of vomiting and diarrhea before I finally got any answers. 

 

BM: Sarah, I have to ask.  I am a prostate cancer survivor and when I was diagnosed, I had a fair idea as to what was going on.  But in your case, how were you able to process the diagnosis of a rare cancer such as neuroendocrine?

 

SB: Sad to say, I am used to cancer.  My grandparents both died of two different types of cancer, one from lung cancer, one from brain cancer, so cancer is a thing I have dealt with.  It wasn’t new to me; but having been told this was the type of cancer I had, and I had never heard of it until that day.  So, it was quite a shock.  I didn’t know how to process this. 

 

BM: I am no doctor, but I do know that ‘neuro’ is a term that pertains to the brain, but it sounds like neuroendocrine is not tied to one’s brain.

 

SB: Yeah, so the neuroendocrine cells are all over the body.  They have similar traits to nerve cells as well as hormone-producing cells.  The tumors can occur anywhere in the body.  The most common locations are in the lungs, appendix, small intestine, rectum and in my case, pancreas.  So, it varies, and the neuroendocrine tumors produce excess hormones in a neuroendocrine tumor; or these tumors release hormones and so that is a non-functional neuroendocrine tumor.

 

BM: We’re confident you’ll be able to learn some tips and tools to help you through your cancer journey, but first we’d like to ask you to please give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the Subscribe button below and click on the bell icon, so you’ll be notified the next time we post an interview. And if you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew Before I Got Cancer.”  We also want to remind you we are not purveyors of medical advice.  If you seek medical advice, please contact a licensed healthcare professional.

 

To get back to your cancer journey, Sarah, we talked about the additional hurdles one faces when diagnosed with a rare cancer.  Neuroendocrine.  How difficult was it to find a doctor that had the expertise to treat neuroendocrine?

 

SB: When it comes to doctors, they are very limited in terms of specialists in terms of this type of cancer.  With my situation, since I had just moved out to Minnesota in May of 2022, and then I get the diagnosis in November of 2022, I had only just established a part time job as well as getting my daughter in school and my husband was just getting established with a new job at the Post Office out here.  As a result, I didn’t have insurance.  I had Oregon health insurance, and I didn’t have anything for the state of Minnesota.  I was trying to figure out the best options for treatments and things out here, but health insurance coverage for my treatment wasn’t going to happen in Minnesota because I could not afford to pay for it.  I got an oncologist through Health Partners, who said he would try to find a doctor for me in Oregon.  So, that is what I ended up doing.  My first choice would have been Mayo Clinic out here because that is the big one out here, but because I didn’t have insurance, I couldn’t go there.  They got me a referral to Oregon Health Sciences University in Portland, that is, for at least Oregon, the big one out there.  I ended up getting a surgical oncologist who specializes in neuroendocrine cancer, and he had a whole database of tumors he had removed from other people down in California.  He said if and when I end up removing the tumor, that he would cross-match it and make sure the cells come from the pancreas or the cells come from somewhere else in the intestinal area.  So, I ended up having to fly out to Salem, Oregon, where I am originally from, and go and live with my parents for a while.   That was December of 2022.  I met with the doctors in January 2023, and went from there.

 

BM: The Oregon Health Sciences University is, as you said, a top-notch facility.  That said, as you began treatment, were you confident in your care team?

 

SB: Yes, I did.  I figured if I am going to go somewhere, I might as well go there because being from Oregon, I know that it is top-notch. 

 

BM: You had mentioned the words “treatment options.”  Did you have treatment options, and if so, what were they?

 

SB: I had multiple treatment options.  With the tumor that we discovered behind the pancreas, it was about the size of a lemon at that time.  I was told what my options were.  They could do surgery based on the location of the tumor, but there are some complications that come along with surgery.  Then we talked about doing chemotherapy, and for me at least with the type of cancer I have, they have the new pill form of chemotherapy, and I opted for that.  So, I was taking two types of oral chemotherapy for two weeks, then two weeks off while they waited to see if the pills were effective. 

 

BM: So, now you have this gameplan.  There was going to be surgery preceded by chemotherapy.  Were you comfortable with that gameplan?

 

SB: We couldn’t do surgery right away.  They were worried about its location, so they were hoping the chemo could make the tumor a little bit smaller just for my surgeon’s peace of mind.  I ended up doing two months of chemotherapy.

 

BM: And everybody who goes through chemotherapy will to varying degrees, say it is unpleasant.  How unpleasant was chemo for you, even if taken orally?

 

SB: You know, it was pretty bad.  The first week it wasn’t too bad, but the way the medication affected me, I got these awful back and chest cramps, just some awful pains, then the nausea that came along with it.  I didn’t end up losing my hair.  That was one of the benefits of taking the pill form.  Nonetheless, I chopped off all my hair because it was getting in the way.  At least taking the pills orally, I was able to go back to Minnesota and go back to my daughter and my husband for a couple weeks while I was taking it, and do a little bit of work here and there since I was part time.  They allowed me to come back and do what I could, just to try to keep my sanity.

 

BM: We have heard about the chemo.  What about the surgery?  What was the toughest part of the surgery while it was taking place and after it took place?

 

SB: After the two months of chemo, I didn’t want to do this anymore.  I was done with being away from my family and I wanted things to get back to normal.  In May of 2023 was when I ended up having my surgery, and the hardest part was all the negative ‘what ifs.’  Due to where my tumor was, if they were unable to dissect it from the end of my pancreas, they would have to do a Whipple Procedure and that entails removing the head of the pancreas and then having to reconnect everything to the pancreas, so the pancreatic juices and enzymes don’t end up eating me in the process.  That’s kinda hard because the pancreas is like a sponge, you poke holes in it, and it leaks.  They didn’t want to deal with that, so I was spared going through a Whipple Procedure.  Thankfully, the surgery was a success.  Afterward, I was in the hospital for about a week, then I was discharged.  After I woke up from the surgery, I was able to get up and walk around.  That was my goal, just to keep moving, because sitting still drives me nuts. 

 

BM: Sarah, we briefly mentioned at the top the notion of additional hurdles faced by those with rare cancers.  I survived prostate cancer, and if needed, there were support groups for people like me; but what about you, as a survivor or neuroendocrine, were there any organizations to support you during treatment and post-treatment?

 

SB: I never found any, but then again, I didn’t look.  I was focusing in on me and my family.  I had so much support from them that I didn’t need any extras from an outside source.

 

BM: Okay, and also on a positive note, we want to hear about the point in which your journey took a turn for the better and it appeared you were headed toward survivorship.  What was that like?

 

SB: Pretty much it was after surgery.  I was discharged from the hospital, still staying with my parents in Oregon, but friends visited me, and I was able to video chat with my husband and daughter, and that was a huge plus.  It was after the first post-surgery follow-up visit, that my surgical oncologist said everything’s good, I was good, they were able to remove everything, and that if I wanted to return to Minnesota, I could.

 

BM: Now let’s get to the point in which you have left Oregon, you have moved back to Minnesota.  Physically, at this point, how close are you to how you felt pre-diagnosis?

 

SB: In June of 2023, I was able to come back to Minnesota and didn’t have to go back to Oregon for anything medically-related.  At that point I had gotten insurance in Minnesota and gotten an oncologist in Minnesota.  I did go to Mayo Clinic just to get established there in case I needed any post-treatment medical attention, and the great thing is that at the Mayo Clinic the neuroendocrine oncologist is a friend of my oncologist at OHSU.  Got all that figured out, I was actually working and taking care of my daughter and doing housework and stuff like that.  For the most part, I feel physically that I was back to 100 percent of where I was before cancer.  I can do just about anything that I could do before my diagnosis.  Every once in a while, the fatigue hangs around. There are some days when I just hit a wall in which I don’t want to do much of anything.

 

BM: Now we are going to wrap things up, Sarah, and we conclude the same way anytime we talk to a survivor.  Imagine you encountered somebody one on one, somebody who had just been diagnosed with neuroendocrine.  That person may have a lot of questions, and you might have a lot of answers, but if there was one point you wanted to make sure that person remembered and carried with them, what would it be?

 

SB: My biggest thing is listen to your body.  Be your own advocate.  Doctors may know science, but you know your body.  Again, it took me three or four different tries to get something figured out, and so, be your own advocate because nobody else is going to do it.  Make sure you listen to your body, and don’t be afraid to tell your doctor that what they have in mind isn’t working.  Exhaust all your options.

 

BM: Excellent advice.  Sarah Bennett, thanks very much for being with us.  Thanks for sharing a story that can be of great assistance for anyone diagnosed with neuroendocrine.  Thanks for joining us on Cancer Interviews.

 

SB: Of course.  Thanks for having me, Bruce.

 

BM: And that will conclude this episode of Cancer Interviews and we want to remind as we always do when we wrap up that if you are on a cancer journey, you are not alone.  There are individuals out there like Sarah who can make aid that journey.  So, until next time, we will see you on down the road.


SHOW NOTES

 

After experiencing gastrointestinal issues in 2022, it took a total of four visits to ERs and an urgent care before a CT scan revealed Sarah Bennett had a mass in her duodenum, near her pancreas.  The mass later led to a diagnosis of a rare cancer, neuroendocrine.  She did not have to undergo a Whipple procedure, but did have to take an oral form of chemotherapy.  That preceded a successful surgical removal of the mass.  Sarah achieved survivorship and said her health is very close to what it was before her diagnosis.

 

Time Stamps:

 

01:46 In 2022, Sarah says she began to get very sick.

03:20 After visiting the ER, doctors concluded she had GI issues.

04:42 On a third trip to an ER, she underwent a CT scan, which revealed a mass in the duodenum.

06:30 Describes neuroendocrine.

08:58 Didn’t have health insurance in Minnesota, where she was diagnosed.

10:15 Sarah was seen by an oncologist in her native Oregon, where she had health insurance.

12:30 Names her treatment options.

13:35 Describes oral chemotherapy.

16:21 Describes her surgical procedure.

19:18 Sarah recalls moving toward survivorship.

21:10 How she felt post-treatment.

23:18 Advice to others diagnosed with neuroendocrine.

 

KEYWORDS (tags):

 

neuroendocrine

whipple procedure

chemotherapy

sarah bennett

duodenum

bruce morton

endoscopy




 

 

 

 

 

 

 

 

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