Marissa Willis survived Stage II kidney cancer | radical left nephectomy | flank pain

DESCRIPTION

In 2013, Marissa Willis noticed a pain on her left side that wouldn’t go away.  It got so bad that so that she went to an urgent care.  They took an x-ray and it revealed a large mass covering the area where her kidney should be.  She then got referred to her primary care`physician, which led to a surgical procedure, a radical left nephrectomy, to remove the tumor.  After the surgery, Marissa was told she had been diagnosed with Stage II kidney cancer.

When Marissa Willis of Blue Springs, Missouri felt a “weird sensation” in her left side, she thought perhaps she had pulled a muscle from working out too much, that or a hernia.  It was on a Sunday afternoon that she decided to go an urgent care, where x-rays were taken.  They showed a large mass, which looked like a cloud covering where her kidney should be on the left side of her intestine.  Nobody viewing the image could identify the problem. 

Marissa next went to her primary care physician, who ordered an ultrasound.  That began a ten-day process of referrals and tests, and she was optimistic they would determine what was wrong with her.  At this time, she didn’t have any of the symptoms of kidney cancer, such as fatigue, unexplained weight loss or flank pain, which one can feel on either side of their back. 

At the University of Kansas Medical Center in the Kansas City area, Marissa was told doctors wouldn’t know what was wrong with her until the tumor was removed.  They performed a radical left nephrectomy, which removed the tumor, her left kidney and the adrenal gland that was sitting on the kidney.  Five days after the surgery, Marissa was tld she had Stage II kidney cancer.  Her medical team said that the cancer was slow-growing and estimated it had been in her kidney for close to five years. 

About nine months later, the cancer resurfaced, but the nodules were so small, less than a centimeter, that doctors decided to opt for active surveillance.  That said, Marissa is grateful for the proactive work for her care team, which led to early detection of cancer in Stage II.

Marissa Willis is happy to say she is able to return to the active lifestyle she enjoyed before her diagnosis.  The one change she has to live with is that of watching her diet.  She is working with a dietician to monitor her sodium and protein consumption. 

Her advice to anyone diagnosed with cancer is to rely on those closest to them, family, friends, co-workers and their care team, because all of them will be needed. 

Additional Resources:

Kidney Cancer Association: https://www.kidneycancer.org

TRANSCRIPT

Bruce Morton: Greetings and welcome to the @CancerInterviews podcast.  I’m your host, Bruce Morton.  Compared to other types, we don’t hear a whole lot about kidney cancer, but on this segment, we are going to do some learning.  Not only has our guest survived kidney cancer, but she seeks to help others on their kidney cancer journeys.  She is Marissa Willis of Blue Springs, Missouri, and Marissa, welcome to Cancer Interviews.

Marissa Willis: Hi, Bruce.  Thank you.

BM: First, we would like to learn about your life exclusive of your cancer journey, so if you would, tell us where you are from, what you do for work and when time allows, what you do for fun.

MW: I am from Blue Springs, Missouri, just outside of Kansas City.  I work fulltime, I am in human resources and have been doing that for a little over 20 years now.  For fun, I love to travel when I can and do that with friends and family, spend time with my husband and my two sons and do anything we can to be outside and kinda get outta the house.

BM: So, it sounds like prior to your diagnosis, you were leading a pretty healthy, active lifestyle.

MW: I was.  Just going all the time, like a lot of families.

BM: But at some point, something must have seemed not quite.  What went wrong and how did that manifest itself?

MW: It was in April 2013, I was very active, working out a lot, eating healthy, but noticed something on my left side just didn’t quite feel right.  It was an odd sensation under my skin, not so much pain, but a really weird sensation.  I thought maybe I had pulled a muscle or worse yet had some kind of a hernia from working out too much, I just really didn’t know.  So, on a Sunday afternoon I found myself in an urgent care to get checked out.

BM: And what did the people at the urgent care tell you?

MW: They did what they could.  They took an x-ray, actually, and all they could see on my left side was a large mass, and when I looked at the x-ray it just looked like a cloud covering where my kidney should be, that left side of the intestine.  It kinda baffled everyone.  So, I got referred to my primary care physician the next day for further evaluation.

BM: What was next step in your quest to find information about this mass?

MW: Went to my primary care the next day and she took a look at their report and that afternoon, I went to get an ultrasound.  It was very worrisome to her what it could be.  From that ultrasound it was determined even that day or the next morning that it wasn’t good.  You know, something that large shouldn’t be there.  I was in my late thirties at the time, so it was really not normal.  That kick-started about a ten-day whirlwind of referrals and tests and I felt really good the process going to figure out what it was and what the next steps were to take care of it.

BM: I can only guess if it was of concern to your health care provider, it must have been very concerning to you.

MW: It was, especially because I felt wonderful.  I didn’t have any of the symptoms of kidney cancer.  I wasn’t tired.  I was losing weight but that was because of a change in diet and exercise, no blood, no symptoms typical of your kidney cancer people.

BM: And just so people know, Marissa, what are those symptoms?

MW: Some of the more normal symptoms are things like blood in the urine, excessive tiredness or fatigue, unexplained weight loss, flank pain, which you can feel on either side or toward the back.  Those are some of the symptoms and unfortunately those symptoms can be symptoms of a lot of other ailments, but if you are having any of those it is worth it to get checked out.

BM: Now, let’s get back to your chain of events.  What was next after this last step?

MW: After the primary, I was referred to the University of Kansas Medical Center, which is here in the Kansas City area.  It’s a fantastic group and I have been with them ever since in my care.  Underwent a myriad of tests, CTs, bone scans, lots of blood work of course, and just test after test.  They couldn’t do anything until it was officially out, but they could see the mass on the kidney, and it was almost encapsulating my kidney by the time my kidney and the tumor were removed.  From the time I talked to my primary, surgery was two weeks later, a radical left nephrectomy, so that included my entire left kidney, the tumor itself, and the adrenal gland that was sitting on that kidney because it was almost covering that as well.

BM: I just want to be clear.  Were you told you had kidney cancer prior to the mass’s removal, or after?

MW: I was officially told after.  Prior to, I was told cancer was likely the cause of the tumor, but they could give me complete certainty and the mass, and the tumor were removed, and the pathology was done, but I had my nephrectomy, the found out like five days later, it was confirmed that it was Stage II kidney cancer.

BM: Was there still a treatment regimen after the tumor was removed?

MW: At that time, no.  At that time, I was declared free and clear, there were no other signs, nothing else showing up on my body.

BM: A theme that pertains to every type of cancer is the importance of early detection, and in this situation, it looks like early detection was your friend.

MW: It was.  It was definitely, and I think the big part of that was being aware of my own body and trusting it.  You know, I knew something didn’t feel and just going with that gut instinct.  I could have gone on with my daily life and not gotten it looked at, just because it had been there since it was Stage II.  I mean, it had been there quite a while, close to five years they think, just because my type was a slow-growing cancer.

BM: If I am hearing you correctly, it sounds like the toughest part of your journey was just the removal of the mass.

MW: Of that phase, yes, but once I got the removal done, about nine months later it did come back and resurfaced again in a checkup.  Once diagnosed, there are followup visits and that’s something you have to be really good about going to.  So, at a checkup, I had a normal x-ray done because they not only want to look at the site where the kidney was to make sure there is nothing around it, but kidney cancer likes to go other places and one of those places is the lung, and that’s where my metastatic disease was found, in the right lung.  Just a couple nodules showed up on an x-ray and for myself they decided just to do an observation on me.  They were so small, less than a centimeter, so just some observation and evaluated every few months to see if it progressed.

BM: Marissa, with different guests we have had, have had a recurring situation, one that leaves them at an emotional crossroads.  Either they can say they survived cancer once and they can do it again, or the first bout with cancer took such an emotional toll that they were devastated at the prospect of another battle.  How difficult was this for you when you found out this was coming back?

MW: It was difficult, but honestly I wasn’t surprised, just because of the size of the tumor so that they took out initially.  They were up front and very honest and said it can come back, and there was a likelihood it could come back.  It could have been months, as it was in my case, or it could have taken years, but they were honest with me that it could return.

BM: You had talked about your active lifestyle.  How was your active lifestyle compromised by your going about it with just one kidney?

MW: For me, it was just taking a little more care in my diet.  I worked with a dietician there at University of Kansas and the main thing I was told to do was just watch sodium and proteins.  Luckily that wasn’t a huge stretch for me.  I was trying to stay away from salty foods, just to have a good diet.  Proteins?  That needed a little bit more modification, but luckily it didn’t restrict too much more than what I was doing pre-diagnosis.  As you said, I was active, so just recovering from surgery, that took a little more getting used to, to get back into being active again and exercising.

BM: We talked about the common thread of early detection.  I want to talk about another potential common thread.  Each kidney cancer journey is its own entity, but would you say for anyone on a kidney cancer journey, diet is really important?

MW: I would say it can be important.  In my case, diet didn’t have much to do with my getting the cancer, but it definitely is important just because for me, the sodium part.  Just watching that after diagnosis, was, and still is, something important that I need to watch.

BM: During this difficult time, what was your source, or sources, of support.  You had mentioned friends and family.  I would suspect they were a source of support.

MW: Oh, they were, and still are.  I lean on them when I need to.  My husband and friends are just fantastic.  Most of them have been with me the last nine years, the whole journey. 

BM: Now I want to mention not a family member or a friend, but an organization that has aided your cancer journey, and that’s the Kidney Cancer Association.  How did you and the Association cross paths?

MW: When I was first diagnosed, I did what a lot of people in my position do and that’s go on the internet, which be a good and a bad thing, but in this case, it was very good to find the Kidney Cancer Association.  They were online when I was looking for resources about kidney cancer.  There were some good things on there about just being a new patient, about diagnosis, about things to expect, and treatments.  Then in 2021, to fast forward a little bit, I am now on the Association’s caregiver and advisory council.  I am really just enjoying getting my story out there and doing what I can to help with education and advocacy.

BM: I would think you would be uniquely positioned as a caregiver because when addressing anyone on a kidney cancer journey, you have been in their shoes.  How much does that help?

MW: It helps a lot.  If I am in that position to help them understand what they are going through and down the road if I have a friend or a family member that has to go through the journey, I think just being able to empathize with them, but also help them advocate for themselves and get the treatments that they should, get a second opinion if necessary, just help them step by step in what they should expect and take from everything/

BM: When you are serving as an advocate, do you deal with people in person, or in this Zoom-driven, do you talk to people outside of the Kansas City area?

MW: It’s just internet.  I also have a kccancermom page on Twitter and Facebook.  A few people message me and just visit with me. 

BM: And is your help mostly informational or can it be emotionally-driven because this is a very stressful time for somebody going through cancer?

MW: Mostly informational, but I can definitely understand the emotional side of it.  Everyone takes that journey differently in how they look at it, and it depends upon their staging, their lifestyle, where they are at when they get that diagnosis.

BM: You have the recurring nature of your diagnosis, but it looks like for the most part, you have gotten the upper hand on this.  How exciting is that?

MW: It’s very exciting.  I am working with my medical team.  They have been fantastic.  They have got me on a treatment right now that has kept everything stable.  I cannot be more grateful to them, and it’s helped me to still keep an active life, keep doing what I want to do, travel and do things with family and friends, and just enjoy life.  I have got the metastatic disease, but it is not stopping me too much from doing what I want to do.

BM: You mentioned your care team and something we hear from some of our other guests, and that’s the importance of getting a care team you can trust.  It sounds like that’s the way you feel about your care team.

MW: It is.  They have helped me these last nine years now and given me options, helped educate me through those options of different treatments along the way and together we have found something that is working for me that is really helping me live that full life.

BM: Marissa, we are about ready to wrap things up, and we like to finish the same way.  If you found yourself speaking one-on-one with someone who has just been diagnosed with kidney cancer, and you had a message for them, what would it be?

MW: I think when you first get that diagnosis, take a deep breath.  Take a step back and really rely on those closest around you, whether it is family, friends, co-workers, whomever it is.  Really get them in your corner because you are going to need them.  Next, look at your care options.  Talk to your primary or whoever you got the diagnosis from, and ask questions all day long.  You should have a team that doesn’t stop you from asking questions until you are done asking.  Use their time.  That’s what they are there for, to get you through this.  And then, lastly, go out like I did, go out on the internet, use caution, but if you have kidney cancer, KCA, the Kidney Cancer Association, is a wonderful resource.  They have a diagnose tool kit on there, and so many stories like mine and others that can really help and provide some good information.

BM: Okay, Marissa, thanks so much for your two-pronged bit of information, first with your cancer journey and what you are doing for others.  We have no idea how many people appreciate what you bring to the table, but it is a lot, and some of those might watching or listening to Cancer Interviews.  So, Marissa, once again, thanks so much for your time.

MW: Absolutely.  Thank you, glad to do it.

BM: And that’s going to conclude this edition of Cancer Interviews.  We want to remind you that if you are on a cancer journey that you are not alone.  There are people like Marissa eager to provide help.  So, until next time, we’ll see you on down the road.

Additional Resources:

Kidney Cancer Association: https://www.kidneycancer.org

SHOW NOTES

TITLE:  Marissa Willis, Kidney Cancer Survivor – Blue Springs, Missouri, USA

Marissa Willis survived kidney cancer and through the Kidney Cancer Association works as an advocate for others on a kidney cancer journey. Her proactive approach resulted in the cancer being caught at Stage II.

Additional Resources:

Facebook: KC Cancer Mom

Twitter@kccancermom

Kidney Cancer Association: https://www.kidneycancer.org

Time Stamps:

02:20 Marissa noticed a weird sensation in her left side, went to an urgent care.

05:12 Names typical kidney cancer symptoms.

06:04 Through a radical left nephrectomy, a tumor and her left kidney were removed.

07:15 After the procedure, it was confirmed she had Stage II kidney cancer.

08:55 Cancer made a comeback when nodules were detected in her right lung.

10:30 Marissa said post-diagnosis, she was advised the cancer could return.

11:14 Describes life with one functioning kidney.

KEYWORDS (tags):

kidney cancer

cancer

cancer interviews

bruce morton

nephrectomy

marissa willis

flank pain