Kathi Hunter

@arienette | contributor
Kathi Hunter

Cowden Syndrome: Grieving What Cancer Took Away From Me

A little over five years ago, I had a hysterectomy for what I later discovered was stage IIIa endometrial cancer. Chemotherapy and radiation soon followed. I was 36 at the time, and my OBGYN oncologist asked if I wanted to freeze my eggs. I said no. I was confident in that decision, and I’ve never regretted it. I didn’t want to bring a child into the world knowing my history, and as it wasn’t like anyone was beating down my door wanting to have kids with me. I told myself while I would never be a mother, at least I would be alive to be the best aunt ever to my niece (and I totally am). At the time, I didn’t feel anything regarding that decision. My mind was so focused on surviving that I didn’t think about what I was losing. I couldn’t. I blocked it out. Treatment ended for me nine months later, but it wasn’t until my sister told me she was pregnant with niece number two that the dam burst. I went home and was playing video games when I found myself sobbing uncontrollably. I cried for the children I would never have, I cried for the mother I would have been and I cried for nine months of one of the hardest struggles of my life — and so much more. I knew my emotions had finally caught up with everything I had been through and the only way out was through. I had to have an unrelated event happen to trigger it, but once they finally caught up, there was no stopping the grief pouring out of my body. I had to go through that to really heal from everything that had happened, and to be OK with never knowing the feeling of bringing life into the world. I still wonder what kind of mother I would have been. A year and four months ago, I had a double mastectomy for breast cancer. Luckily for me, I didn’t need further treatment than my surgery. My surgeon basically told me what that meant — I would lose my breasts. I agreed, and before I got back to my parents’ house, tears were rolling their way down my cheeks. By the time I got in their door, I was crying nonstop. The funny thing was, I didn’t even know what I was crying for. I’m a fat woman. I’m 41 (42 in nine days! Eep). My breasts were more of a hindrance than anything else. They didn’t cause excessive back pain or anything, but it seemed like they were almost always in the way. I knew from the moment I was diagnosed I would be taking both breasts. I have Cowden syndrome. The risk of getting it in my other breast was too great, therefore both had to go. Me after having the remaining hair shaved off post my first chemo. Do you see the relief on my face? It was so real. I knew this. So why the water works? I had to realize that even though I was so ready to let go of my breasts, that even though I knew from the moment I heard the words “breast cancer” and “DCIS” that a double mastectomy would be in my future, that I still had to grieve for what I was going to lose. That I don’t have to like or care for a body part in order to grieve for it. It’s still a lost body part, it’s still something cancer took from me. Too often we don’t allow ourselves to grieve for what cancer takes from us. We are focused on surviving the treatment. We are focused and in a rush to get back to our everyday lives, not realizing that cancer changes our everyday life and it will never be the same again. I lost my ability to bear children, to be someone’s mom (although I am a good cat mom!). I lost my breasts, and while I didn’t really like my breasts, they were still a part of me and I had to feel that loss. I don’t regret either decisions I had to make to keep myself here, but if I ever have to go through cancer again, grieving whatever I will have to lose even if I am OK with losing it, even if I don’t want to feel that pain while I am trying to save my life, will be part of my journey.

Kathi Hunter

5 Things I Wish I Knew Before My Bilateral Mastectomy

It has been five months since my skin sparing bilateral mastectomy for breast cancer. I feel like I am still learning, still healing and there’s a lot of things that don’t really get covered in a book or DVD I wish I had known before I had my surgery. 1. No matter how you felt about them before, you will grieve the loss of your breasts. I had large breasts. I didn’t like them, and I felt like they were in the way. I started grieving the loss of my breasts shortly after I met my surgeon and I told him I wanted the mastectomy. I left his office with my mother in tow, and by the time we got to her car I was crying. The tears came and went right up until I had my surgery. I felt confused, because I  did not know why I was so sad for something that most days, I didn’t like. I had to learn it’s OK to grieve the loss of your breasts. They’re still a part of you, no matter how you feel about them. 2. The “iron bra” feeling is real. One of the first things I remember immediately after surgery was feeling like the ace bandages that were wrapped around me were too tight. It wasn’t until I got home and the bandages came off for the first time that I realized this feeling wasn’t the bandages — it was me. Even to this day, five months later, I still feel like I am wearing an iron bra that I cannot take off. It is a constant feeling of wearing a bra that is too tight. Exercise helps, but I still feel it daily. 3. For awhile, you may hate looking at yourself in the mirror. The first time I looked at myself in the mirror as I was getting ready to take a shower, I cried. I saw extra skin, the dog ears; I saw one side looking like it had caved in on itself, I saw staples, I saw my drains and I cried. I cried through  most of that shower, also. I cried every time I had to shower and look at myself. I remember feeling like a “freak,” like I wasn’t “normal.” I hated  having a visual representation of what cancer had taken from me. It’s been five months, and while I still periodically look at my chest, still swollen in certain spots, I sigh. I feel like I am starting to feel … some acceptance of the new me. 4. Healing takes time. It’s been five months, and I feel like my body is still healing. Having body parts removed takes a long time to heal. Some parts of my chest still feel swollen, I had a seroma drained last month and feel like another one is forming in the same spot and there are days when I still get very, very tired. This is not a surgery with a quick recovery time. It is a huge adjustment. 5. Flat reconstruction is an option more doctors need to talk about. When I told my doctor I wanted a mastectomy, my mother immediately asked about reconstruction. My doctor stated he did not do reconstruction with mastectomy because he felt the body needed to heal from the mastectomy first. I was fine with this because I wasn’t sure if I wanted it. Now, I did not expect the excess skin, or the dog ears. Later on, I became aware of flat closure. Women all over are opting, if they have had reconstruction, to explant and remove their implants and excess skin and just be flat. Or, if they have not had reconstruction like me, to have no excess skin, and just be flat. When I first became aware of this and saw pictures of women, beaming with their nice looking flat chests, I was in awe of how beautiful and confident these women looked. More doctors need to put flat on the menu. More doctors need to give that as an option. (For more info, check out Flat Closure Now.) Now, despite all of this, I do not regret my choice of having the mastectomy. I’m happy to say that with it, my chance of recurrence for breast cancer is down to less than one percent. Without taking medications! As someone that has an increased risk of cancer, that’s amazing, and makes the last five months worth it.

Kathi Hunter

5 Things I Wish I Knew Before My Bilateral Mastectomy

It has been five months since my skin sparing bilateral mastectomy for breast cancer. I feel like I am still learning, still healing and there’s a lot of things that don’t really get covered in a book or DVD I wish I had known before I had my surgery. 1. No matter how you felt about them before, you will grieve the loss of your breasts. I had large breasts. I didn’t like them, and I felt like they were in the way. I started grieving the loss of my breasts shortly after I met my surgeon and I told him I wanted the mastectomy. I left his office with my mother in tow, and by the time we got to her car I was crying. The tears came and went right up until I had my surgery. I felt confused, because I  did not know why I was so sad for something that most days, I didn’t like. I had to learn it’s OK to grieve the loss of your breasts. They’re still a part of you, no matter how you feel about them. 2. The “iron bra” feeling is real. One of the first things I remember immediately after surgery was feeling like the ace bandages that were wrapped around me were too tight. It wasn’t until I got home and the bandages came off for the first time that I realized this feeling wasn’t the bandages — it was me. Even to this day, five months later, I still feel like I am wearing an iron bra that I cannot take off. It is a constant feeling of wearing a bra that is too tight. Exercise helps, but I still feel it daily. 3. For awhile, you may hate looking at yourself in the mirror. The first time I looked at myself in the mirror as I was getting ready to take a shower, I cried. I saw extra skin, the dog ears; I saw one side looking like it had caved in on itself, I saw staples, I saw my drains and I cried. I cried through  most of that shower, also. I cried every time I had to shower and look at myself. I remember feeling like a “freak,” like I wasn’t “normal.” I hated  having a visual representation of what cancer had taken from me. It’s been five months, and while I still periodically look at my chest, still swollen in certain spots, I sigh. I feel like I am starting to feel … some acceptance of the new me. 4. Healing takes time. It’s been five months, and I feel like my body is still healing. Having body parts removed takes a long time to heal. Some parts of my chest still feel swollen, I had a seroma drained last month and feel like another one is forming in the same spot and there are days when I still get very, very tired. This is not a surgery with a quick recovery time. It is a huge adjustment. 5. Flat reconstruction is an option more doctors need to talk about. When I told my doctor I wanted a mastectomy, my mother immediately asked about reconstruction. My doctor stated he did not do reconstruction with mastectomy because he felt the body needed to heal from the mastectomy first. I was fine with this because I wasn’t sure if I wanted it. Now, I did not expect the excess skin, or the dog ears. Later on, I became aware of flat closure. Women all over are opting, if they have had reconstruction, to explant and remove their implants and excess skin and just be flat. Or, if they have not had reconstruction like me, to have no excess skin, and just be flat. When I first became aware of this and saw pictures of women, beaming with their nice looking flat chests, I was in awe of how beautiful and confident these women looked. More doctors need to put flat on the menu. More doctors need to give that as an option. (For more info, check out Flat Closure Now.) Now, despite all of this, I do not regret my choice of having the mastectomy. I’m happy to say that with it, my chance of recurrence for breast cancer is down to less than one percent. Without taking medications! As someone that has an increased risk of cancer, that’s amazing, and makes the last five months worth it.

Kathi Hunter

Cowden Syndrome Facts: What to Know

If you’ve read my story with having two cancers in four years, you’ll know that after having my first cancer, I found out I have Cowden syndrome. If you ask the average person, they’ll likely tell you they’ve never heard of it. So, here’s a reminder. Cowden syndrome is also called PTEN Hamartoma syndrome. Your PTEN gene is your tumor inhibitor gene. It causes growths, benign tumors, skin tags, thyroid goiters, hamartomas, vascular issues, enlarged heads, and puts you at risk for many cancers. Once diagnosed, your doctor will want to refer to many specialists who will want to watch you closely to make sure you don’t develop cancer — or if it does come around, it’s caught early. As someone who has dealt with this for going on four years now, here are five things I want people to know about Cowden syndrome. Every year, I go through what I like to call “testing season.” My skin is checked for anything suspicious. My thyroid is scanned via ultrasound. I used to get mammograms, but then I went and got breast cancer. I have colonoscopies. (I had 37 polyps this time around, and my doctor feels I need to do them every year now. My soul is still weeping at this news.) This period of my life is something I live with, but it’s not easy. If you’re a cancer survivor, think of your three, six, yearly check-ups, but done all at the same time. It’s something we have learned to live with, but anxiety during this time is real. Testing season is exhausting, but the alternative — getting a third cancer and not finding it before I need chemotherapy or radiation, or God forbid, it kills me — is much worse. It’s not unusual for people to remove parts of their body to avoid getting cancer. I know people who have had preventative mastectomies, hysterectomies, even thyroidectomies because they did not want cancer. I used to think this was extreme; why go through surgery if you don’t need to? But now, after having undergone so many tests and being watched so closely in the name of preventing a third cancer, I see why some people take this measure. Sometimes, the lesser of two evils, removing a body part to make sure you don’t have to face a cancer diagnosis, is the best choice. Hamartomas are not the same thing as blackheads. As a teen, I thought I had an excessive amount of blackheads on my forehead, nose and parts of my cheeks. I later discovered they were hamartomas. They don’t go away, no matter how hard you wash your face, scrub it, or pick at them. My dermatologist has even said burning them away is pointless, they just grow back. Not everyone has “bad skin.” Sometimes, they’re dealing with something much more complicated. Cowden feels like the gift that never stops giving you gifts that you cannot give back. I have had a goiter in my thyroid since I was 22. I have pretended I was the earth, and the skin tags that invaded my neck, under my breasts and legs were the trees, sprouting up throughout my body as a way to deal with all of these skin tags for years now. I have had two cancers because of Cowden, and some days I am overwhelmed because I keep thinking about the possibilities of what will happen next. Next year my thyroid comes out because the nodules are still growing, and starting to cause problems. No cancer is there — but thanks to Cowden, it’s still growing. The last thing I want you to know about Cowden syndrome? It exists. Those of us who have it exist. Back in 1978, when I was born, no one knew about Cowden syndrome, and my doctors were so perplexed they referred to my large head and numerous issues as “Kathi Hunter syndrome”. The more we talk about this condition, the more people will see it and maybe go get tested. The more doctors will learn so they can improve how they treat their patients.So, there you have it. Cowden syndrome. It’s real, it’s out there, and it affects more people than you realize.

Kathi Hunter

Cowden Syndrome Facts: What to Know

If you’ve read my story with having two cancers in four years, you’ll know that after having my first cancer, I found out I have Cowden syndrome. If you ask the average person, they’ll likely tell you they’ve never heard of it. So, here’s a reminder. Cowden syndrome is also called PTEN Hamartoma syndrome. Your PTEN gene is your tumor inhibitor gene. It causes growths, benign tumors, skin tags, thyroid goiters, hamartomas, vascular issues, enlarged heads, and puts you at risk for many cancers. Once diagnosed, your doctor will want to refer to many specialists who will want to watch you closely to make sure you don’t develop cancer — or if it does come around, it’s caught early. As someone who has dealt with this for going on four years now, here are five things I want people to know about Cowden syndrome. Every year, I go through what I like to call “testing season.” My skin is checked for anything suspicious. My thyroid is scanned via ultrasound. I used to get mammograms, but then I went and got breast cancer. I have colonoscopies. (I had 37 polyps this time around, and my doctor feels I need to do them every year now. My soul is still weeping at this news.) This period of my life is something I live with, but it’s not easy. If you’re a cancer survivor, think of your three, six, yearly check-ups, but done all at the same time. It’s something we have learned to live with, but anxiety during this time is real. Testing season is exhausting, but the alternative — getting a third cancer and not finding it before I need chemotherapy or radiation, or God forbid, it kills me — is much worse. It’s not unusual for people to remove parts of their body to avoid getting cancer. I know people who have had preventative mastectomies, hysterectomies, even thyroidectomies because they did not want cancer. I used to think this was extreme; why go through surgery if you don’t need to? But now, after having undergone so many tests and being watched so closely in the name of preventing a third cancer, I see why some people take this measure. Sometimes, the lesser of two evils, removing a body part to make sure you don’t have to face a cancer diagnosis, is the best choice. Hamartomas are not the same thing as blackheads. As a teen, I thought I had an excessive amount of blackheads on my forehead, nose and parts of my cheeks. I later discovered they were hamartomas. They don’t go away, no matter how hard you wash your face, scrub it, or pick at them. My dermatologist has even said burning them away is pointless, they just grow back. Not everyone has “bad skin.” Sometimes, they’re dealing with something much more complicated. Cowden feels like the gift that never stops giving you gifts that you cannot give back. I have had a goiter in my thyroid since I was 22. I have pretended I was the earth, and the skin tags that invaded my neck, under my breasts and legs were the trees, sprouting up throughout my body as a way to deal with all of these skin tags for years now. I have had two cancers because of Cowden, and some days I am overwhelmed because I keep thinking about the possibilities of what will happen next. Next year my thyroid comes out because the nodules are still growing, and starting to cause problems. No cancer is there — but thanks to Cowden, it’s still growing. The last thing I want you to know about Cowden syndrome? It exists. Those of us who have it exist. Back in 1978, when I was born, no one knew about Cowden syndrome, and my doctors were so perplexed they referred to my large head and numerous issues as “Kathi Hunter syndrome”. The more we talk about this condition, the more people will see it and maybe go get tested. The more doctors will learn so they can improve how they treat their patients.So, there you have it. Cowden syndrome. It’s real, it’s out there, and it affects more people than you realize.

Community Voices

Describe your 2019 in one word.

<p>Describe your 2019 in one word.</p>
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Community Voices

I have had two cancers in four years. I might get more.

Four years ago, I was diagnosed with endometrial cancer. I was 36. I’m 40 now. I remember the shock I felt. My gynecologist had just told me a week before she didn’t think it was possible I had endometrial cancer, after all, “I was too young.”

About four weeks later, I was having a complete hysterectomy that later revealed that my cancer had spread into my cervix, my fallopian tubes, into one ovary, and into my lymphatic tissue. I did three sessions of chemotherapy, then 28 external pelvic radiations and then three more sessions of chemotherapy. I finished treatment March 2016. Now, almost four years post finishing my treatment, things are still great. My last checkup I was told everything looked healthy and good.

Me shortly after going bald for the first time. Do you see the relief in my face?

Shortly after treatment ended, I was talked into genetic testing by the physicians assistant for my oncologist. “Don’t you want to figure out why you got cancer?” she said. Reluctantly, I agreed. I thought for sure it would come back negative.

“Good news! You are not BRCA positive. But you do have Cowden’s Syndrome.”

Cowden’s Syndrome is also called PTEN Hamartoma Syndrome. It is a mutation of the PTEN gene. The PTEN gene is your tumor inhibitor gene. It causes multiple benign tumors (called hamartomas) all over your body, an enlarged head, goiters in the thyroid, skin tags, and puts you more at risk for certain cancer, like breast, endometrial, colon, rectal, thyroid, and melanoma.

It was like so many things regarding my medical history that I had wondered about for ages finally made sense. My big head could be explained. The goiter I’ve had for almost twenty years, lodged firmly in my thyroid, explained. The weird bumps and skin tags that never seemed to go away, despite my best efforts? Explained. I was no longer a mystery, things made sense.

They went through the list of cancer I was at the most risk for. Endometrial was at the top of the list. Next was breast. I was advised I had a 77 percent chance I would have breast cancer before I was 70. Then thyroid, colon, and skin. I asked what all this meant, and they said that I would have to be tested every year. Breasts would be tested twice a year. I would have to rotate every six months between a MRI and a mammogram. I would need to start annual colonoscopies. I would need to see a dermatologist for skin checks.

I began the annual testing. My life began feeling like I was just waiting for the moment where I would be told I would have to repeat the hardest nine months I’ve ever had to go through. It took me at least two years (two rounds of tests) before I finally accepted that this was just something I was going to have to deal with. This is my new normal. Living, working, breathing — but also doing everything I can to make sure that if cancer wants to pay another visit, it doesn’t stay for long.

Fast forward to May of 2019. I had been putting off my mammogram/MRI cycle. I had no symptoms to indicate that I had an issue, so instead of going and just getting it over with, I waited. Finally, upon the insistence of my Mother, I went. I thought for sure this would be like the others, that I could go, get my boobs squished, and leave.

Well, you know what they say about assumptions.

I was diagnosed with DCIS, or DCIS, early June of 2019. DCIS is an early, non invasive form of breast cancer. Typically DCIS, depending on the stage and grade, requires either a lumpectomy along with radiation or for those that wish it, a mastectomy for treatment. No chemotherapy.

Now, the thought of radiation again, even on a different body part, made me nauseous. The thought of having a lumpectomy and then potentially, needing to do this all over again with a recurrence made me feel even worse. If I was going to do this, then I was going to go for the most aggressive treatment option. I was going to do this and decrease my chance of recurrence down as low as possible.

I decided on a bilateral mastectomy, along with sentinel lymph node biopsy. My surgery was seven weeks ago today, on August 7th.

Now, I’m a fat woman. I had big boobs. I didn’t like them. They sagged. They were in the way. I thought losing them would be fine, because the most important part was that I do everything possible to make sure I did not have to repeat this process again later.

I remember the first time I looked at my chest after the surgery. I cried. I cried because my boobs had been replaced by a mess of bruising, swelling, staples and drains. It took me a good month before I could shower without crying because I couldn’t stand how I looked. Today, the swelling is mostly gone, the drains and staples took a hike weeks ago, and I am still adjusting to my new body shape. Reconstruction was not an option because my surgeon does not do reconstruction with mastectomies, so I went into this knowing I would be “flat” for awhile, if not permanently.

Me after getting my drains and staples removed.

I am back to work post surgery. My risk of recurrence for breast cancer has gone down to less than one percent, so body issues aside, I made the right choice for me regarding my treatment. I go to physical therapy once a week to work on getting my range of motion back to where it was pre-surgery, and it improves every day. I am trying to get back to a place where I feel reasonably okay with how I look. Some days are better than others, but I’ll get there. I beat two cancer in four years, and let me say this here so I can come back to this when I am feeling low — I beat two cancer in four years, so I can do anything.

My annual Cowden’s Syndrome tests have started, and unfortunately I’ll be going for a biopsy for my thyroid in about two weeks. Three of the nodules in my goiter that I have had for about twenty years now are growing per the ultrasound I had two weeks ago, and my endocrinologist and I both feel a more aggressive approach in monitoring them is needed. So yes, I’m still trying to shut the door on one cancer only to have the possibility of needing to open another door. I am nervous for the possibility, but am choosing to cross that bridge when I get to it.

Right now I’m just a Kathi who is trying to find her place in a post cancer world while hoping I don’t have to go back to the having cancer world.