My Rare, Stage 4 Cancer Was Caught By ACCIDENT!

Added: 2026-05-31

[00:00:00]She said, most stage four kidney cancer patients don't live past five years.

[00:00:05]And would you be okay with leaving your husband potentially as a single father?

[00:00:11]It really felt like I was seeing my life flash before my eyes.

[00:00:16]I actually had no symptoms before my diagnosis.

[00:00:19]And that's the thing with kidney cancer.

[00:00:21]I've learned that most of us go in for something else and we incidentally find a tumor.

[00:00:29]And that's how we discover the cancer.

[00:00:31]My husband and I had been married almost four years, I think, and we were getting ready to start a family.

[00:00:38]We don't have any kids of our own yet.

[00:00:40]We had been trying to conceive for about eight months, and the whole time I was going to my gynecologist and letting them know, like, we're not getting pregnant, what can we do?

[00:00:50]And we knew that I had a history of fibroids, uterine fibroids, and we suspected that may be impacting our chances of getting pregnant.

[00:00:59]But, you know, I was pretty much dismissed. After that eight months was up, the gynecologist finally agreed to refer me to get my fibroids removed because I, I had to complain a ton about my heavy period.

[00:01:14]So finally they were like, okay, let's have you look into getting a myomectomy, and you need to have an MRI of your pelvis done for us to get that started.

[00:01:23]So I went in really excited because I was like, oh, we're finally going to get these fibroids removed.

[00:01:28]We're going to get pregnant.

[00:01:29]It's going to be super exciting.

[00:01:31]I did my MRI without any hesitation.

[00:01:36]I got my results a couple weeks later, which in hindsight was a little weird because those it shouldn't have taken that long.

[00:01:43]But finally, when those results came out, the results said that there were bone metastases in my pelvis that were suspicious for malignancy, and I had never read such words in any of my medical reports.

[00:01:58]I've had nothing short of a pristine medical history.

[00:02:03]I get my yearly checkups, I go to the gynecologist, and always, like I've been told, you're very healthy.

[00:02:10]There are no issues.

[00:02:11]So that was the first shock that my husband and I experienced.

[00:02:15]The doctor explained to us what that meant.

[00:02:18]It was it meant that based on those scans, they were suspicious I had cancer somewhere else in my body that it had spread to my pelvis.

[00:02:26]At that point, I was 36.

[00:02:27]At the time, we thought we were starting a different chapter of our life.

[00:02:31]To be told this news was just devastating, and that set off a cascade of more tests.

[00:02:40]So I had a CT scan of the body, and that's where we discovered the kidney tumor.

[00:02:46]It was in my right kidney.

[00:02:47]And at the time, based off this, off the scans, it looked like it was like a ten centimeter tumor, which was really large.

[00:02:54]But again, I hadn't experienced any of those symptoms.

[00:02:58]The doctors called and asked, have you experienced blood in your urine?

[00:03:02]Are you experiencing flank pain?

[00:03:03]Any of that? And I said, no.

[00:03:06]Like there nothing had alerted me to this at all.

[00:03:10]It really felt like the biggest gaslight of my life.

[00:03:12]I was like, there's no way that this is happening because I feel perfectly fine.

[00:03:17]They didn't want to biopsy the kidney because they said that's too risky.

[00:03:21]So thankfully I was able to get in, get a surgery date fairly quickly.

[00:03:27]They did get me in for a biopsy of that spot in my pelvic bone, and that biopsy came back negative for cancer, interestingly enough.

[00:03:35]So my husband and I feel like that was like a red herring that alerted us to the real cancer.

[00:03:41]So I feel incredibly blessed that we were able to discover it when we did in such a weird and unexpected way.

[00:03:49]I had the surgery in April and thankfully that surgery went really smoothly.

[00:04:02]After the surgery, the pathology came back confirming it was a renal cell carcinoma.

[00:04:10]In my follow up scans a couple of weeks afterwards, they discovered some lesions in my liver and in my lungs that weren't there previously.

[00:04:18]So in that short time, the cancer had already spread, meaning I was officially at stage four and yet again, like, I felt like the ground beneath me had just disappeared.

[00:04:30]And I was like, there's no way.

[00:04:32]There's just no way I'm at stage four.

[00:04:35]This was the very first oncologist I was meeting first.

[00:04:38]First cancer doctor, very nervous, and the pathology report came out.

[00:04:44]The doctor went over what it meant and immediately my husband and I felt overwhelmed me more so, like I was so overwhelmed with all the information, all the uncertainty.

[00:04:55]My husband had looked through the pathology report and noticed a couple of things that the pathologist pointed out.

[00:05:01]But the pathologist had also written some notes on the bottom saying that the cancer, the cancer cells themselves displayed some characteristics of FH deficient renal cell carcinoma, which is a rarer subtype.

[00:05:17]So then my husband asked about that note in the pathology report.

[00:05:21]He said, well, the pathologist thinks it could be this, you know, rare variant do you think Lynn could have because she has fibroids and said, no, that's too rare.

[00:05:33]She doesn't have that rare kidney cancer.

[00:05:35]And of course, it came back confirming I had a FH deficient renal cell carcinoma, the rare cancer that she said it was too rare for me to have.

[00:05:43]My mother and father both passed away.

[00:05:46]My dad actually passed away last July after my diagnosis, and we haven't had the chance to do genetic testing on either side, so we'll never know which side it came from.

[00:05:57]Early on, when we found out it was a hereditary cancer, we were advised to let all of my family members know, and it's up to them if they want to get genetic tested.

[00:06:07]I'm not a sister who is just going to leave it up to them, so I immediately got those genetic tests, my results to my brother and sister and told them, you need to get tested right away, and she doesn't have the gene mutation and she will not pass it down.

[00:06:21]My brother also ended up getting genetic tested and he also came back negative.

[00:06:25]We're also hoping to pursue, you know, still building our family.

[00:06:30]We were rushed into a cycle of IVF after that stage for diagnosis.

[00:06:34]But I did ask, you know, before I start treatment, can I pursue fertility preservation because I still want to have children.

[00:06:43]But she said, oh yeah, that's something you and your husband should discuss.

[00:06:49]But I do want to let you know that you should really think about it, because most stage four kidney cancer patients don't live past five years.

[00:06:58]And would you be okay with leaving your husband potentially as a single father, which is bad enough as it is.

[00:07:09]And it wasn't until she made that comment of, you know, are you prepared to leave your husband as a single father?

[00:07:17]It wasn't until that moment that I cried, and I remember I think she or my husband grabbed the box of tissues on the counter and give them to me.

[00:07:29]I think that's when the diagnosis really hit me.

[00:07:34]I was not prepared to think through all of that.

[00:07:40]In that moment, in that doctor's office with a person I had met for the first time.

[00:07:46]So yeah, I was just feeling really overwhelmed and devastated, and it felt like I was already starting to mourn.

[00:07:56]And I've said this over and over again, as I've talked to other people about my journey so far.

[00:08:02]I'm constantly mourning the life that I thought I would have had, and that's something I still have a hard time with today, and I struggle with it.

[00:08:10]I still cling to like, what it could have been, what my life could have been.

[00:08:14]I've always wanted to be a mom.

[00:08:15]That's the only thing I've ever wanted in my life.

[00:08:17]And my husband knows.

[00:08:18]So to be confronted with that decision in such a harsh way was really, really hard because I felt like I was unfairly being forced to choose between the possibility of motherhood and living.

[00:08:35]I'm so thankful that we were able to do that.

[00:08:38]And, you know, we were able to have embryos frozen.

[00:08:41]So those are our very big reasons to be hopeful.

[00:08:45]So I'm an elementary school teacher, and I feel like I'm living a double life, like it feels like a spy sometimes because my students have no idea.

[00:08:54]I haven't announced it at my school because I just don't feel quite ready for that yet, so it feels a little crazy sometimes.

[00:09:00]I wish people knew without me having to tell them.

[00:09:03]I wish people just got it.

[00:09:05]But then at the same time, I don't want that.

[00:09:07]I don't want people to pity me.

[00:09:09]I have learned so much.

[00:09:10]There's so much more to learn.

[00:09:11]But that is a big learning I've had since being diagnosed with cancer.

[00:09:15]Is that cancer at any stage looks so different from everyone.

[00:09:21]When I was first diagnosed, I thought I was going to go bald, and I mean, I still May someday, and I I'll embrace it when it happens.

[00:09:28]But I really had this image of like what a cancer patient looks like.

[00:09:33]They look sick, they look weak and like they're colorless.

[00:09:38]When I received my diagnosis.

[00:09:40]I heard so many from so many people around me.

[00:09:44]But you don't look sick.

[00:09:46]You don't look like you have cancer.

[00:09:47]What do you mean, you have cancer?

[00:09:49]So that was something that really messed with my head for a little bit because it felt like, wait, does that mean you're not taking me seriously?

[00:09:58]Am I being dramatic if I don't look sick?

[00:10:03]So people still make those comments and they say, like, you look so good.

[00:10:07]Like you look great, you look beautiful.

[00:10:10]Which I know it comes from such a kind place, but each time someone says that, it kind of is like a dagger to my heart of like, I may appear to look good to you guys on the outside, but on the inside, like, I'm really messed up.

[00:10:25]Like I'm actually not feeling okay.

[00:10:28]Like I feel so tired and I want to cry.

[00:10:32]Like I just want to cry sometimes for for no reason.

[00:10:35]This whole journey has been pretty isolating.

[00:10:39]I don't know anyone in my close circle who has been diagnosed with cancer, let alone stage four cancer. Really?

[00:10:49]No one around my age.

[00:10:51]So from the get go, I really felt like none of my friends will understand.

[00:10:57]And even if they want to, and they've been nothing short of loving and supportive, I've found that therapy has been really good for me, and it is so crucial for me to have a designated space where I'm able to really express how I'm feeling and feel heard and understood.

[00:11:17]So in the beginning, it was kind of hard navigating that sense of like, none of these people who care for me understand.

[00:11:26]And I felt myself becoming bitter.

[00:11:29]I've been watching my friends, my close girlfriends, who had started having kids a couple of years before, and I've been in like the last decade.

[00:11:39]I've just been in art and I love it.

[00:11:41]I love seeing my friends, I love seeing their families.

[00:11:45]But it's like every time I think about, you know, where other people are in their lives.

[00:11:51]And there's a reason why they say comparison is like the thief of joy.

[00:11:54]It's like, I can't help but compare myself to where other people are in their lives.

[00:12:00]Here I was like, my update of the quarter was, hey guys, I have stage four cancer.

[00:12:06]I felt like we were just reliving this nightmare again and again and again.

[00:12:10]But I would go to sleep at some point and my husband would be up researching, and then I'd wake up and he'd share something else that we needed to do urgently.

[00:12:19]He'd say it was so one morning he said, Lynn, I know what we need to do.

[00:12:24]We need you to get we need to get you to NIH.

[00:12:27]I'm going to save your life.

[00:12:28]We're going to get you to NIH, and you're going to get on this clinical trial.

[00:12:31]I feel incredibly blessed and privileged to have my husband, who goes above and beyond with really everything in life now that I've become his highest priority project, like everything related to my cancer has become his top priority.

[00:12:50]But we were really fortunate to connect with someone else in the Bay area actually, whose husband had had stage four HLRCC, his wife, who were still friends with today.

[00:13:01]She connected us by email to the doctors and researchers at the NIH introducing us, and that got us on a fast track to the doctors over there.

[00:13:14]While that was happening, we also got connected to a family.

[00:13:18]And by we, I mean my husband.

[00:13:19]He also got connected to another family where it was an older gentleman who had HLRCC, and he was able to get on to the clinical trial at UCSD.

[00:13:31]They were able to connect with an amazing oncologist at UCSD, who opened up a clinical trial just for him so he could be closer to San Diego.

[00:13:40]So talk about carrying compassionate doctors.

[00:13:45]I was like, that's incredible.

[00:13:46]So then we learned that there's this clinical trial and that family connected us to their doctor.

[00:13:52]And we're like, is there any way we could get in?

[00:13:54]I called the doctor's office and they were like, okay, we can get you in this Thursday.

[00:13:58]So we flew.

[00:13:59]I didn't realize they were going to sign us for the clinical trial.

[00:14:03]At that meeting, I thought we were just meeting her and she'd do an exam, but she brought out the paperwork.

[00:14:08]They stayed from 6 to 8 p.m.

[00:14:11]after hours, just so that they could meet with us.

[00:14:14]And they signed us for the clinical trial.

[00:14:17]When we were sitting with my amazing doctor, doctor McKay at UCSD.

[00:14:22]She is truly an angel.

[00:14:24]When she was just talking to us and listening to us, it felt like the first time that I could truly exhale.

[00:14:35]I was really skeptical at first when David brought up clinical trials, because I had this perception of clinical trials that this was like, this is where people go for a last ditch effort, like everything else they've tried, hasn't worked.

[00:14:51]You know, my husband had again, done all the research and connected with other people who had been on this clinical trial and seen such success.

[00:15:00]So that gave me a lot of confidence.

[00:15:02]And finally I was like, okay, it sounds like this is what we need to do.

[00:15:06]Clinical trials are where it's at.

[00:15:09]Like, this is how we come up with treatments for people who come after us.

[00:15:15]So I've been flying down to San Diego every three weeks.

[00:15:18]I'm stable, which is really, really awesome, especially for an aggressive cancer like HLRCC.

[00:15:24]Like that is a gift.

[00:15:25]Each time I fly down to have a treatment and come back like here, that my labs are pretty normal and I'm able to receive treatment.

[00:15:33]Those give me reasons for hope.

[00:15:36]Each scan that comes back telling me that I'm stable gives me reasons to hope, like constant conditioning and building that resilience to face things that are so scary.

[00:15:47]But then I'm also, I think, conditioning myself to identify reasons to have hope.

[00:15:55]Hope goes such a long way.

[00:15:57]My husband has been pushing me to do more cardio because cardio is good for, you know, good for everybody.

[00:16:03]But also with all the medication I'm on doing cardio exercises are really good for immune system, right?

[00:16:10]Tricky thing is, cardio is my least favorite activity to do, but for a while he's been encouraging me like, hey, why don't we pick up running?

[00:16:17]Like, maybe we can pick up jogging.

[00:16:19]That'll be good for you.

[00:16:20]And I don't know what came over me, but a couple of months ago I was thinking about like, okay, I really should do some cardio.

[00:16:27]So then I signed up for the San Francisco Half Marathon before I could back out.

[00:16:32]And I decided to do that.

[00:16:35]And I've been training for it, and I'm fundraising for the Kidney Cancer Association.

[00:16:47]And.

[00:16:50]It's so funny that I still don't call myself a runner.

[00:16:53]I really don't think I am.

[00:16:54]I'm just trying to run.

[00:16:57]But training for this marathon has been such an unexpected source of hope for me, because every time I run another mile, or every time I'm able to run for like 20 minutes without stopping, I'm just amazed at my body and just everything it's able to do.

[00:17:22]I'm really excited about doing something that is really hard for me, and I am looking forward to finishing that race and just being able to say that I did it and I was able to do something hard.