A Cautionary Tale And A Cancer Scare
Hello my FOXY FRIENDS!! I know it’s been forever since I wrote a blog post, but this warranted it more than any DIY or decorating project. First off, I do not have cancer again. I didn’t want to use some wishy-washy click bait style title to write about my recent cancer journey. By the way, whoever might be listening. I’m good. I don’t want any more journeys!
Content Warning — We are all (I do have a few male readers) women here, and I’m going to be very open about what happened to me. Most of you know, after following me for so long, that I had cancer when I was 29. If not you can catch up [click here]. I’m going to talk lots about girly parts… so leave now if you don’t want to hear the word vagina a bunch! And if you have a vagina, I want you to keep reading. This could save your life.
Sounded dramatic right? Well let me tell you I was feeling the drama pretty hard when I was told I had Vaginal Cancer. It was a lot to take in considering I had already had radical hysterectomy, and felt like… how could I get a gynecological cancer, I’ve got nothing left? Well come to find out, there are a few more gynecologic cancers than I was aware of.
Five Types Of Gynecological Cancer:
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Cervical (I had this at 29, with no HPV)
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Ovarian
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Uterine
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Vulvar
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Vaginal
Vaginal cancer is what I was diagnosed with, still no HPV, and it’s listed as the most rare.
I’m going to take it back to the start, because this is the part where I want to beg you guys to continue to go to the gynecologist!!!! Seeing mine, no matter how muddled things got, will ultimately save my life. We women always seem to have so much going on, and with talking to friends over the years, it’s always something right? Our periods are painful, emotional, irregular… we have a UTI, a yeast infection, we are peri-menopausal, in menopause, on the other side of menopause. Our vaginas can feel like a real pain in the ass. But we still need to take care of them.
My issue began with what I thought was a small tear right next to my vaginal opening. I’m talking just teensy tiny, but the skin is so delicate, I could feel it, or it might sometimes sting a bit when urinating. It can happen when we get older due to our skin getting thinner, and less supple and moisturized. I’ve also had yeast infections in the past that can cause what are called “mico tears” from the infection causing abrasion. Plus I’ve been in a medically induced menopause for 25 years now. So I bought a really great moisturizer specific to that area and was careful with it. It would seem to get better, but that went on for about a year? I know, I KNOW. That is why I want you to learn from me. I had other medical stuff going on with my knee replacements, and my lymphedema getting out of control, no matter what I did. My toes were blistering, it’s been a real mess. So, my poor vagina got shoved down the priority list. However, I did still make sure to mention it to my gynecologist at an appointment, she took a look during my pap test, and she prescribed a topical cream of Estradiol in conjunction with my super low dose oral hormone replacement. I went on my merry way.
My pap came back ASCUS, and we scheduled a follow up appointment. And an ASCUS pap doesn’t necessarily mean cancer. So please discuss results with your doctor if you are concerned. In fact, nothing I am talking about is meant in any way, to take the place of medical intervention and seeing a DOCTOR, which I am not. Okay, so I tried that for several months. And because it pertains, Jim and I abstained from sex for up to like, 7 weeks at a time during all this, and that was not affecting the area with healing occurring.
Fast forward to a follow up visit (these are important ladies!!!!) and another pap test came back ASCUS, so tests where scheduled. I had a biopsies done on the affected area, and she also did a few punch biopsies up on the cuff of where my cervix was. I had Jim come with me, and he stayed in the room with me during. I held his hand so tightly. I was so thankful he was with me!!!! I was a mess. I’m just being honest. I was SO much stronger the first time. For as easily as I cry during movies and stuff, I didn’t allow myself a bunch of tears during my cancer battle. But on that day, quiet tears slid out of the corner of my eyes, soaking my hair. I could feel the fear consuming me. My mind was reeling and I felt spit back in time. I was just trying to hold myself together.
Another fast forward, to getting my test results. I got the call that my results were in, I knew it was bad, you just know. Especially when you’ve been through it before. You only have to go into the office when it’s bad. Jim was at work and I was alone, and thankfully, they didn’t make me go into the office. I was offered a zoom visit, or a phone call. I chose the call. My gyno here in town is the most caring, lovely, warm, wonderful woman. She told me I had Vaginal Cancer. I got my referral to a Gynecological Oncologist (forward to be referred to as GO) up in Eugene, and we hung up. I sobbed. Loud, body shaking sobs. Then I was done. Same as last time.
Insert weeks of anguish here.
Fast forward a few weeks, and Jim and I are up in Eugene at the GO for our visit, and to find out what our options are to fight this new cancer. I knew it would involve surgery, and I didn’t know what else. More chemo? Radiation? Where there new therapies, creams to apply… I had no idea. I had stayed away from the internet after one search started describing skin grafting. Becasue that scarred the ever loving cr@p out of me, and it was my own fault. I know better. Olay, so back into the GO’s office. He looks over my test results, the biopsy results, does and exam. And firmly and emphatically tells me, I do NOT have vaginal cancer. What I have is pre-cancerous. I’ll most definitely need a surgery, but I do not have full blown cancer. He is a busy guy, leaves the room for me to dress, and tells me someone will come in to schedule my surgery.
Jim and I were left standing there, in some crazy disbelief bubble. Did that just happen? Were the past weeks of grief and worry washed away that easily. That quickly? We’d both donned our battle gear, and mentally fortified ourselves, and we were ready to fight… and, we didn’t have to???
After a TIGHT hug, and while we were trying to absorb this new news, I quickly, with my typo fingers, texted my mom, sister and aunt, to let them know ASAP that I in fact, did not have cancer, AGAIN. I knew they were waiting to hear what was going to happen after my GO visit. And waiting minutes are loooong minutes. Oh and I got dressed. haha. The nurse came back in, we got sorted, and we called Austin as soon as we got to the car.
My surgery is scheduled for this week, and my recovery time will be approximately 6 weeks. The surgery is called a WLE. That stands for wide local excision, and involves surgical removal of the entire affected region, with a wide margin of clear skin. I’ve had bigger things done to me, but the location for this one has me incredibly nervous. I have tried so hard not to be anxious. I’ve had a natural childbirth, my gallbladder out (travelled three days post-op with a baby bouncing on my lap because my dad had had a massive heart attack) I’ve had a radical hysterectomy, chemo, radiation, internal radiation, both my knees replaced, a few lipomas removed… and this, THIS is doing a number on me.
It’s the surgical site. I mean… YIKES. The pre-cancerous area that needs to be removed is right next to my vaginal opening… it’s such a sensitive spot. And that area is so delicate. I’ve been absolutely dreading the future pain and discomfort. I am so ready to get this recovery time behind me. And to be healed up!! It’s been extra uncomfortable since all the biopsies were taken, so my logical brain has known since the surgery was scheduled that this would be a good thing. But the extra weeks & weeks of waiting give my broken worry-wart brain lots of time to stress. Ugh. My brain needs a switch I tell ya. We are ready, the house is ready, we have ever after-care thing you can think of, and my sweet, wonderful, awesome at taking care of me husband will be off to do just that, take care of me. I am so lucky.
The worst part of all this isn’t the toll it took on me… it was having to call my mom, again, and tell her I had cancer. AGAIN. And to tell my Jimmy, I had cancer again… and he was going to have watch me go through it all, AGAIN. And would I survive a second time? How much luck can one person have? Much better people than I don’t get that kind of luck. Our Austin doesn’t remember the first time, but he more than understood this time, and I hated having to terrify him with the news. But it certainly wasn’t going to be something we could hide from him. Again, I somehow got lucky? And I don’t know why. Maybe one day, I’ll know.
As of today, my surgery is close, and I am finally getting this out to you has made me feel a lot lighter. You guys were SO kind and supportive when I finally shared my news. And because it took me so long to do it, only a few days later I found out that I didn’t have cancer, and was able to share that. I actually felt foolish with that flip flopping news, even thought it was GOOD news.
PLEASE. Use me as a cautionary tale. Go to the doctor. Go see your gynecologist. I put off addressing my issue, and if I had kept doing that… my pre-cancer… could be “cancer”. And that PRE can make a life and death difference.
I don’t care how old you are (remember I was only 29!), if you are not sexually active, or if you are in some stage of menopause — we need to see our doctors for regular check-ups, testing and to note any changes. If anything you are experiencing isn’t your norm… GO. TO. YOUR. DOCTOR.
It took some time for me to be able to share this with you guys, because it shook me hard. I didn’t have the mental energy to sit down and write. I’ve been so incredibly anxious. I’ve got hives, I’m not sleeping, etc… just a mess, a ya know? I can feel an incredible weight lifted now, because I wanted to share with you so that you can stay as safe and healthy as possible. I knew I wanted to be the spark for any of you putting off taking care of yourself. You are so important, and I want you to make yourself and your body and your mind, a priority.
Much love, and happiest of holidays to you all!! xo Shan
PS: I do not know why my gyno here in town diagnosed me with vaginal cancer. I have not spoken to her about it. The diagnosis got me up to the GO in Eugene, and I would have to have surgery either way. I have not fully processed my feelings about the mistake.
PPS: Jim’s work has been beyond amazing and soooo supportive. Just, insanely wonderful as soon as we told them. He works with some really great humans!!!!
You aren’t in my regular blog reader (feedly) so I didn’t read this until today.
Hugs to you, Shannon! I’m so sorry you have had to deal with the anxiety surrounding this diagnosis. I just prayed for the Lord’s comfort and grace to deal with the recovery, although you are well into it. Let us know how you are doing, if you are able. If not, I’ll keep praying.
Hi Lori, Thank you so much for your well wishes. It’s been a few months and I’m finally almost fully healed. Had some set backs, and some home visits from my doctor (didn’t know they did those). So thankful for good care and my dedicated husband! Hope 2024 is going well for you 🙂
Thank you so much for sharing this, Shannon! I know it wasn’t easy but I for one will always remember to make that appointment if anything is different with me based on your story. I’m so very glad is wasn’t cancer, but sorry you had to go through so long thinking it was, 🙁 Praying for your surgery and healing !
Yes, if anything I hope people learn from others stories. It’s all I can wish for.
It’s been flip flopped now back and forth between being cancer, and not… all I know is that I did all I could.
The recovery was much longer than expected due to some set backs. I was very lucky to have home visits by my doctor.
And also to have the husband I do. Never could have done it all alone.
Hoping you are healthy as can be, and 2024 is going well for you!!
I don’t know you, except for your blog, but I will be praying for you. I have a dear, dear friend who is experiencing something similar on the cuff of the vaginal wall.
I sure hope they are getting the best care. I will keep them in my wishes.
Thank you so much for your prayers!!!! Shannon 🙂
Thank you for sharing such mixed news and recommendations. They stopped giving me pap smears years ago, since I don’t have a cervix. I will keep an ete on my health. Take care. Praying for a successful surgery and speedy recovery!
Barb, same for me after 20 years of getting them after my hysterectomy.
I still had exams but they were not as frequent. There is still so much to watch for down there for us poor ladies!
All kinds of places for little bad things to grow. I’ve been shocked since my diagnosis to learn of the horrors some women are having to endure.
It’s beyond sad and I know I could have had it so much worse. It was bad enough as it was.
Unfortunately, I had set backs because of my severe lymphedema and it took months for me to be almost healed.
I won’t go into it… anyhow. Hope you are having a grand 2024 thus far 🙂 Shannon
Shannon, I just can’t believe all that you’ve been through! Hugs and more hugs and I will keep you in my prayers.
XOXO ~Jane
Thank you Jane! I appreciate your well wishes very much ~ xo Shannon