I couldn’t possibly tell you how many times someone has said to me,” but you don’t look like you have cancer” after learning of my condition. I don’t think people believe me or even take me seriously at times because I look so “normal” and healthy. Most people have the perception that people with cancer all look a certain way. I was guilty of this prior to being smacked in the face with a stage 4 metastatic cancer diagnosis. But what I have learned and want to emphasize through this post is that cancer doesn’t look the same on everyone. It’s not a “one size fits all” disease. The common mis-perception is that people with cancer are all bald, and perhaps sickly looking. And while this may be true for a lot of cancer patients, it is not true for all. I have had metastatic breast cancer for almost six years and during this time I have never been bald or appeared sick, even when I have been at my worst.
Baldness is not a symptom or side effect of cancer, rather it is a side effect to some chemotherapies.
I remember sitting in the waiting room for hours on end at Sloan Kettering, waiting for a room to open up so that I could get my treatment every three weeks. I have been on soooo many different treatments over the years, but at this particular point in time I was on Navelnine and Herceptin, both of which are administered intravenously. Navelbine was prescribed to me after learning that the cancer had metastasized to my hip and spine. Whereas most chemos are administered through an IV drip, Navelbine was pushed through my vein by the nurses while they were completely suited up from head to toe (gloves, mask, cap, paper suit and booties). It was so surreal, like a scene out of a movie or something. I asked the nurses why my chemo was given differently than most others and why were they so protected when giving it to me? They explained to me that Navelbine was so incredibly toxic, it is mandated by law to be administered by hand. I was advised that it was so dangerous, that if I were to get so much as a drop on my skin, I could potentially lose my arm. Therefore they had to push it by hand and be in the room with me the entire time to monitor and oversee that the needle never slipped from my vein. Total craziness! But as strong and toxic as this chemotherapy drug was, hair loss was not a side effect.
As I would sit for hours in the waiting room, I would make conversation with other fellow breast cancer patients, and yes…most of them were bald. We would exchange our diagnosis, treatment protocols, and experiences. Often times they would tell me that they were earlier stage and that they had a certain number of rounds of chemotherapy and they would be done with treatment. As much as I felt terrible that they too had to deal with the emotional and physical trauma that comes with a cancer diagnosis, in a way I sort of envied the fact that they had a light at the end of the tunnel. Not to make light of anyone’s circumstances, but there I sat, looking like the healthier of the bunch (mostly because I had a full head of hair), yet unlike these other women, I had no foreseeable date/time to the end of this battle. All I have been told over and over again is that I am incurable, will be on treatment for the rest of my life, and that they will keep me alive for as long as they can with the drugs that are available. The irony.
One of my greatest blessings over the past six years, is the incredible resilience that my body has demonstrated. I give thanks for this every day because I feel like my body should have been completely ravished by everything it has been subjected to. But by looking at me, no one would have the slightest clue what I have endured over the years, and continue to at present. No one would be able to tell that I have had multiple surgeries, that I have been post menopausal for six years, that I have been on chemotherapy consistently, along with a whole slew of other drugs. No one would know that an inflammatory tumor essentially mutilated my right breast and that I am awaiting mastectomy/reconstructive surgery. I certainly have my battle wounds, but only I know that they are there. From the outside looking in, I look like the picture of health. And although this resilience has been an immense silver lining for me, I sometimes feel that this whole notion of not looking sick dismisses a lot of what I have been through and what I am still going through.
Having hair and not looking like I have cancer, has been an obstacle for me when it comes to doing my part in the cancer community.
When I speak or write to people/publications in an effort to pitch my story, the feedback is always great. “Wow, your story is incredible, you are so strong, what an inspiration…..” But when I follow-up with a photo of myself, suddenly the content becomes less desired because I don’t have the look to go along with the story. “You look well and healthy and we wouldn’t want to offend other women with cancer” is what I have been told. Do you have other photos where you look more sick? I actually find this to be offensive and hurtful. It’s as if what I have gone through isn’t real or relevant because I look “normal.” But I also get that it can be difficult to understand an illness when the signs are very difficult to see. All of what I am trying to accomplish is for the sole purpose of helping other young women who are newly diagnosed or who are in my same predicament. I truly believe this is “my why” and purpose in all of this. But my appearance sometimes hinders the good that I am trying to do. And that’s ok. At times it can be super frustrating but if anything, it serves as confirmation to me that so much more awareness needs to be brought to the forefront surrounding this issue. There are so many people who are living with chronic disease and appear to be totally fine. This just goes to show that the old saying never judge a book by its cover holds so much truth. You never really know what someone may be up against simply by forming assumptions, based on physicality.
Looking “normal” sent me to the hospital for a week
Last December, I was hospitalized for a week after getting what should have been a common dental procedure. I had my wisdom teeth extracted because they were impacted and it ended up being a total nightmare. During the procedure, one wisdom tooth was pretty impacted so when the surgeon extracted it, she had to use more force, which resulted in a piece of my bone coming off with the tooth…and that was just the beginning of the whole fiasco. One thing led to another and I ended up getting a massive infection that needed to be surgically drained out of my neck (literally! I had a hole in my neck). It was seriously the most painful thing I have ever in my life experienced. I was admitted to the hospital for a week and am still on the mend. I am currently getting physical therapy on my jaw so I can regain full mobility. Needless to say, so many things went wrong that could have been avoided had the proper precautions been taken and had I been treated with a little TLC considering my circumstances. I know for certain, had I went into my initial consultation looking more ill, the oral surgeon probably would have taken my stage 4 cancer diagnosis into consideration, which would have prevented all of the unnecessary pain, trauma and hospitalization. After speaking with the medical staff and doctors during my stay, they all shared that I should have been on antibiotics prior to the procedure to prevent infection, but I wasn’t instructed to or prescribed any by the oral surgeon. I don’t think she realized the severity of the risks due to cancer and the treatment I am on because I appear to be so well. When I see doctors outside of my oncologist, they also find it hard to believe that I look the way I do after reviewing what I look like on paper. Same goes for when I have to visit the Disability or Social Security offices. They look at me like I’m full of it. I’m constantly fighting for my coverage and benefits. It’s so nuts!
I’m not alone in this struggle. Meet my friend Michelle.
While these examples are based on my own personal experiences, I think I speak on behalf of most cancer patients who look well. I have a friend Michelle (who I met through my site :))…a young woman who was diagnosed with metastatic stage 4 breast cancer last year. (Might I insert that she is kicking cancer’s ass!) We ironically share the same oncologist and treatment plan. We had lunch the other afternoon and she shared with me that she struggles with the same issues as do I, due to the fact that we both do not look like we have cancer. Acknowledging how fortunate we are that we do not appear to be sick, here is what Michelle shared:
“Although I am extremely fortunate that my side effects aren’t visible 99% of the time, the fact that people can not see that I am “sick” makes it hard for them to accept and believe that I am actually going through treatment for stage 4 breast cancer. The sleepless nights, pains, hot flashes, nausea, mood swings, anxiety, emotional toll it has taken on me and my family, time and money that is constantly ripped away from us-none of it shows by just looking at me and I have to say I do a pretty damn good job covering it all up. Very often I hear comments like “must be nice” when I have to take a day off work to rest or even go to appointments. Oh yes, I just LOVE laying in bed all day hot, sweaty, depressed, and in pain. NOT!” … She struggles with people not understanding the severity of what she is going through. I think anyone whose diagnosis is taken lightly or dismissed altogether can relate to how she feels and what she struggles with on a daily basis.
I really am not one to complain much about my circumstances. I don’t consider myself to be sick and that word sick has never resonated with me. Yes I have been through hell and back and am still walking through the fire sort of speak, but I’m still standing and I see the glass as half full. I feel blessed to be alive, I cherish everyday and live my life to the fullest. I have zero complaints about looking well, but I do want to have a voice, I want to help others, I want my circumstances to be taken seriously and I want to be understood.
XO
Hi Steph,
Wow! It feels like you wrote this article just for me! I’m 54 years old and have been fighting stage 4 non small cell lung cancer for a little over a year. I didn’t lose my hair except fir a softball size of hair due to radiation which I cleverly cover up. My own oncologist says I’m the healthiest looking sick personality he knows. I feel almost guilty when I see people in the doctors office bald and pale. But like you I’ve been through hell. Tumor that ate through my skull. Tumor removed. Upper lobe of my lung removed. Part of my chest wall removed. Lung collapse, radiation to my head, chemo which landed me in the hospital for a week. Blood transfusions. Lymphodema which was resolved thank god. NED FOR ONE LOUSY MONTH then New Mets on my lymph nodes on my aorta. 45 continuous radiation treatments along with chemo. And now immunotherapy. I still have cancer in my body but am stable for now. My side effects have stolen more than the cancer but not my hair so people now think I’m not sick or not too sick. Phew…..felt good to vent all that. People don’t truly understand so I don’t tell them. We all put on that brave happy smiling face. I’d love to read anything else you’ve written. Do you have a blog? How are you feeling and doing? I see this was written a few years ago. I hope you are well ! 🙏💜
Tha k you for sharing, Stephanie! I’m just finishing up treatment for stage IIB cervical cancer and I hear that all the time. I talked with my
Fiancé about it and he understood how it could be frustrating, until his boss mentioned to him that I didn’t look sick. He then understood just how disheartening it is! Again, Thank you so much for sharing ❤️
Hi Steph. Thank you so much for this article. I was diagnosed with stage 1 uterine LMS back in October after arguing with 2 Gynaes that I needed surgery. I had a total hysterectomy on Friday to remove a further 14cm tumour in my uterus and one of the most common phrases I hear is “well you don’t look ill”. Thank you for highlighting this issue
Hi Lynsey,
Wishing you total healing and I apprecaite you reading my post and feedback very much.
XO
Again, thank you for sharing this. My husband and I often comment on how healthy of a cancer patient I am (stage 4 metastatic breast cancer diagnosised at 33). I don’t look sick, and have my hair back so I don’t feel like I get the same kind of support I did when I was bald and outwardly appeared ‘sick’. I’m glad I don’t look sick, and I feel healthier a lot of the time that I did before cancer. Thank you for sharing.
Hi Sarah…It’s so interesting to get your take on this since you have been on both sides, having been bald and now having hair going through treatment. I hope to bring awareneness that this “one size fits all” sterotype is not at all accurate. I’m glad that you are feeling healthier too. Wishing you total healing and sending love.
XO
Being a cancer patient at MSK who has completed treatment and currently or as of Sept 4, 2017 NED and 1 year from original diagnosis, I get it. Although I lost all my hair, I still looked well most of the time which people were amazed at, not knowing all the “horrendous” short and long-term affects of treatment. The support was great during treatment but once finished everyone drifted back to life as usual except me. My point, unless you are a cancer person or caregiver you just can’t know the full scope of what it means. Your blog is a great way for people without cancer to have a snapshot of what the experience with cancer is like, thank you.
Congrats on NED! That is the best news. I have felt like people haven’t understood the full scope for 6 and a half years now and it can be very challanging…I know you can absolutely relate. I don’t think people can truly understand what this life is like without ever experiening a cancer diagnosis. However, my hope is that people without cancer can understand a bit more from what I have shared. Thank you for your comment and for reading my blog. Continued health and blessings to you Diane.
thankyou I have stage 4 diagnosed age 33 I am 36 have 2 children and work no one would never
expect me to have cancer feels like a secret and I like to look nomal like everyone else knowing I am not
We are blessed to look “normal” on the one hand but somtimes we lack support as people tend to forget our circumstances. Kudos to you for working and being a mother of 2 children. I wish you total healing ! Blessings
I’m so glad I stumbled on this today. I finished treatment for stage 2 cervical cancer 5 weeks ago. It included 31 external beam radiation treatments, 4 internal treatments and 5 rounds of chemo. I hear all the time “how good I look”. I did not lose my hair. I had minor bruising from multiple IV insertions. Aside from that my complexion stayed clear, my hair grew, etc. When people look at me, they often don’t take seriously the fact that I NEED to be off work to be able to rest at the advice of my oncologist. I’ve gotten strange looks myself while visiting Work. I just wanted to thank you for writing this, as I know how daunting it can be dealing with looking healthy and not fitting into others perception of what a person with cancer is expected to look like.
I can relate to you one million percent! When I tell people I have stage 4 cancer they look at me like I have 3 heads. While we are so fortunate that we do look “normal,” it comes with a lot of backlash and misunderstanding. I pray that you overcome all of it, get through this rough patch and that you are able to look back at all of it. Praying and pulling for you. Thank you so much for reading and reaching out.
Lots os love to you…
Nice piece there steph, you did great in your presentation. Long live steph and all the best in your pursuit.
I have someone who’s so dear to me and she has been battling cancer for years now, she’s no other stranger but my mom…..
She’s given up because she isn’t “a lady of steel” like some of you can hold yourself up.
Please all I ask of you is just to make time to preach encouraging words to her on my behalf, just make her know all isn’t over because she has cancer.
Just do that for her and she will be good …otherwise she’s doomed…
Please
Steph!! Your story is so unique and special, I feel so honored to know you. While not looking “sick” is great I can totally see the struggle… I often get “you don’t look like you are a cancer survivor” meaning I don’t look like I have ever been through such a struggle or that I could ever look sick. It is sort of discrediting what I have been through and beating two types of cancers was not easy AT ALL! Lol I take it as a blessing thank god I look so good, but now we can bring awareness to bigger issues!! So proud of you for putting what we feel into writing, I love reading your posts ? Keep Writing….
Stephanie, thank you for your kind words. I have often felt it was selfish of me to keep my diagnosis to myself especially when I have found so many incredible women like you that are out there making it easier for the rest of us. When I first found out my reasoning was actually for my sons that I am incredibly close to.My oldest had a summer in Europe planned and my youngest had the opportunity to work in Hawaii for a year and I knew if they thought I was stage 4 they would cancel their plans and come home. As it was, when I told them that I had cancer they both flew home immediately to change my diet and help me in anyway they could. They have both been vegan for years so they were a huge help!
I honestly feel so good, everyone just thinks I am all better, most people I know including family don’t even know I was dealing with cancer,
I do plan on coming out about it at some point, I want to encourage women the way you have me and show them this is not a death sentence anymore, that there are many of us out here cheering the others on.
Steph, this is an excellent article. Had I not known your story, I, too, would not realize the severity of your illness just by looking at you. You are beautiful, vibrant and just positive, so I can see how others could misunderstand too! Xoxo
Hi Stephanie! I worked with your brother for 13 years and saw just how much you are loved and treasured. He’s very private, but shared enough for me to see that. Now, I’m good friends with Stephanie Scott and when I found out you two were childhood friends I couldn’t believe how small the world is. I know there is a reason for who we meet and when and I know that I was meant to learn your story more intimately. I hope we get to meet someday! Thank you for writing about your life and sharing so others can learn from you. This was a beautiful post. You are a beautiful soul. I’m amazed at your strength and willingness to keep going. I pray that you will be cured! ?
Wow. Hi Shannon! What a small world. To know my brother and to also know Stephanie, who is also like family to me. I love them both dearly. I can only assume you are amazing too, being friends with the both of them. Thank you so very much for the kind and encouraging note. It really means the world and I too hope that we could meet one day….I will have to ask Rod to help us make it happen. Thank you so very much again for the beautiful words. Lots of love…. XO
I was diagnosed last year with stage 4 cancer, I take 2 oral cancer drugs . Only myself and my husband know I am stage 4. I am actually at my healthiest, when I was diagnosed I went vegan immediately and take better care of myself than I ever have. My oncologist supports my decision to keep my diagnosis to myself, he has stage 4 patients that are still going strong 20 years later and he believes I can easily be one. I’m currently Ned.
My main point was to say that finding you on line was a lifesaver. The exact thing (your beauty) that might put others off is exactly what encourages me. Like kris Carr, you are changing the face of cancer and I am so grateful to you for that.
Tina, I am so very touched by your message. I actually have tears in my eyes reading it. Messages/comments like yours are what encourage me to keep going and to keep sharing. What incredible news to be NED! I admire you…the strength it takes to keep your diagnosis to yourself is no easy decision either. I too made a ton of lifestyle changes which I believe have been key in keeping me healthy. My hope is to spread the message that even us who have been diagnosed stage 4, can keep on thriving and live life as normally as possible. Much love and many blessings to you. May you continue to be in perfect health. XO Thank you.