Why I’m Coming Out Of The Cancer Closet
Earlier this year I was diagnosed with Invasive Lobular Breast Cancer. There was no anger, no “why me?” I went straight to self-blame and a list of what I didn’t want.
I didn’t want people to know. I didn’t want people who love me to hurt. I didn’t want to be called a ‘cancer victim.’ I didn’t want to hear about survival rates. I didn’t want “I’m sorry you have cancer” hugs. I didn’t want sad, pitying eyes directed at me. I didn’t want to be immersed in a world of cotton-candy pink ribbons. I didn’t want to have cancer.
As word seeped out among family, friends, and my church community, my focus was on keeping my cancer-life separate from my work-life. My list grew longer. I didn’t want colleagues deciding for me I had too much on my plate for them to refer cases. I didn’t want clients concerned about the priority of their matters. I didn’t want adversaries to think I was trying to get sympathy by playing the c-card. As far as I know, I was successful at keeping IT out of my work-world.
So why, after achieving my privacy goal and wrapping up radiation treatment yesterday, am I suddenly getting chatty on the subject? Because I want you to have information that I almost didn’t get.
Let me break here and make a couple of disclaimers (you were expecting something less from a lawyer?). First, I don’t pretend to represent ‘cancer patients’ and I have no illusions about my medical or scientific expertise – you are simply getting my opinion based on my personal experience. Second, the facility and most of the staff where I am being treated is excellent and it is not my intention to malign either. My issue is with an individual’s handling of an event and is not indicative of how my overall case was handled there.
When I was first diagnosed, I took weeks to research, process, and pray about the decision I had to make. My choices were masectomy or lumpectomy followed by radiation – and I had to make the decision before I knew whether or not the cancer had spread to my lymph nodes. I educated myself. I made lists of questions that I took with me to my various doctor appointments. I took notes on the answers. I switched medical teams after a botched biopsy. I got a second opinion on the type of cancer and treatment. If being a prepared patient was a class, I would’ve gotten an ‘A.’
I learned there were new alternatives to the 6-7 week traditional radiation regimen, so I decided to pursue that route. Proton Radiation Therapy was not available for my type of cancer. The radiologist resident assigned to me told me there was only one other option, described the invasive but shorter procedure, and told me if I opted for that procedure they would have to refer me to the other radiologist on staff because her doctor (my assigned radiologist) didn’t do it.
She left me to ponder the two options while she went to get my doctor. He came into the examination room and explained the traditional regimen I would be on. No mention of the other option. Was he avoiding referring me out? I decided it was a moot issue because, having already had two surgeries, I had mentally decided to go with the less invasive approach.
The treatments would take seven weeks, five days a week. I thanked him for the information and told him that because the process was so lengthy I would have it done at a hospital closer to where I lived. He asked me how much closer. Ten to fifteen minutes – depending on traffic. He said that wasn’t much of a time difference. I told him it wasn’t just the distance – if I was going to be doing this for almost two months, I might as well do it in a town where I routinely shop, bank, etc.
That’s when the miracle happened. He suddenly remembered a third option for radiation. One that lopped three weeks off the treatment time. One that wasn’t done at the other facility I’d mentioned.
“Is it as effective?”
“Every bit as effective.”
“Are the side effects worse?”
“No – there might be more thickening of the skin, but it’s more likely the doctor would notice it than you.”
“Is it riskier?”
“No – they have been doing it in Canada for years and we have fifteen years of data on it.”
“Then why . . . ”
“The reason I didn’t think to mention it sooner is that we don’t use it as often.”
I was glad there was a better option. I was very, very angry that it was only mentioned to me because I planned to go elsewhere. Those of you who know me would have been amazed at the restraint I demonstrated by simply saying: “I’ll go with that option.” I didn’t see an upside to antagonizing the staff who would be treating me.
The process is called hypofractionation or hypofractionated radiation therapy. The total radiation dosage is divided into larger doses per treatment which results in fewer treatments. For me, it was the difference between 34 traditional treatments and 19 with hypofractionation.
Fifteen less treatments, three less weekly doctor appointments, about thirty less hours of treatment and travel, and thousands of dollars less. I can’t imagine why he almost forgot to mention it.
This newer radiation therapy procedure for breast cancer is probably not done everywhere. If you ask about the option and you are told the doctor is unfamiliar with it or it is not offered at that facility, check elsewhere. There are numerous reasons to move to a different medical facility and it’s done all the time. Do not let fear of hurting the staff’s feelings, loyalty, shyness, or any other reason deter you from making the best choice for your health and your life.
Three extra weeks may not seem like much time to someone not going through radiation. But for the person who loses pay each time they’re off work, the person who needs assistance with transportation, the person who has adverse affects to treatment, and any person who is opposed to spending thousands more than they need to pay, three weeks is a very long time.
I thought I’d asked all the right questions. Asking if there were alternative treatments wasn’t enough. Now we know to specifically ask if hypofractionation is an option.
As long as I’ve broken my ‘vow of silence,’ I’d like to lighten things up by sharing some tips I picked up about dealing with this process as well as my list of things to say – and NOT to say – to a person who tells you they have cancer. But I’ve already violated the keep-it-short-on-the-internet rule. So please join me Monday as I continue this break from our regularly scheduled programming!
Meanwhile, if you were subjected to unnecessary medical procedures or know a question we should ask to avoid it, please let us know in the comment section below.
That’s a pretty big deal to forget. I’m impressed you restrained yourself from saying anything, Shel. 🙂 Thanks for sharing as I’ll pass this along to friends who may need this info.
Hi Shel,
We met at OWFI in May. I had this saved to read, and finally got to it. Love that you researched, and were brave to open up to the rest of us. Prayers for your healing.
I hate to hear that money appeared to play a part in your potential treatment. Hospitals should be non-profit, and medicine and healing should never be about how much money a physician or clinic or medical group could make off of your sickness.
Hi Rhonda – glad to hear from you. I enjoyed chatting with you at the Buzz session. I agree with you that medicine and healing shouldn’t be about the most profitable resolution – that was pretty offensive! Our only defense is arming ourselves with as much information as possible – and often that is just not effective enough. Thank you for your prayers – much appreciated!
I have always admired you dear friend and more times than you may know have been inspired by you. So grateful to have you in my life and for the many ways you bless those of us around you. I shared your story about the emotional first day with Beth as she told me of a patient she found crying in her waiting room at Memorial Hermann. But for this…
Everything you said back, plus one to infinity. Plus one more.
I’m so glad you spoke out…it will help definitely help others who find themselves in any medical situation. The real problem with health care is exactly what you experienced. So happy that you are done, that you are well and that you are sharing. Love ya!!
Thanks, Brenda! I still have the 5 years of medication with its annoying side effects (prayers for Steve on that score!) but that sure beats the alternative!!
My prayers are with you as you continue your recovery. And thanks so much for sharing your story. I have really enjoyed your blogs. Stay Blessed!
I’m so glad you’re enjoying the blog, Melissa – thanks for letting me know. Thanks also for the kind words and the much appreciated prayers.
I admire your courage so much, Shel. So glad you are my friend. Prayers for ultimate healing will continue.
Thanks, Deb – your friendship and support has been a blessing in my life.
Shel, thank you so much for being transparent and sharing your story. Sometimes it’s the things we are most afraid to share that impact others. I know you have saved lives here. Thank you for your courage. Sending prayers for your 100{2303b849a176fc4c55cbcb5b49f44c0b6a86ba83e746fb3d962701d1b8d54085} recovery.
Thank you, Kristin – much appreciated!
Shel, wow. I was intrigued Wednesday when you made the comment about a twist to the blog. This is certainly a twist! I am again just awed by your courage and grace. Thank you so much for sharing your experience. You are truly an inspiration. Along with others who posted above, I am also looking forward to your “what not to say” list. Good grief you are such an incredible tough woman!!
Thanks, Lindsey – you always have something kind and uplifting to say. Just one of the many reasons I enjoy your company!
Michelle,
There are persons in this life that we meet in a passing moment. But in some of those moments there are people like you who make such an impression on others that are unforgettable. You are truly inspiring. Defeat is certainly not an option. It is clearly evident that many people care about you and your family. My family is behind you 100{2303b849a176fc4c55cbcb5b49f44c0b6a86ba83e746fb3d962701d1b8d54085}. We will keep you in our prayers.
Thank you, Eric I am so touched by your note. It means a lot to me.
So glad you’re well. I will pray for continued recovery. Thank you for sharing.
Thanks, Dusty – much appreciated!
I am REALLY glad you came out of the closet to share this information, Shel. You did such an incredible job of educating yourself before making the decision, and STILL didn’t get some key information until circumstances revealed it. It just seems wrong. Happy happy HAPPY things are turning out well for you in this situation. 🙂
Me too, Natine – thanks for all the prayers and support along the way!
Shel, you never cease to amaze me. Thanks for sharing this. I think we are kept in the dark about a lot of medical issues because so much of it is about money, and keeping the money flowing through the facility. I’m guessing that if the doctor thought you didn’t have insurance or money or any ability to get money, the doctor would have “remembered” that option quite a bit earlier. Good for you for speaking up for yourself! And good for you for sharing this so we are more aware.
Thanks, Gina. Did you see Deborah’s comment about the money thing? She made a great point.
Once again you shared valuable insight on your blog–that I hope never to have to use for myself. Thanks for courageously sharing what you’ve learned so that others may have brighter hope.
I look forward to the post about what NOT to say. I always want to say the right thing but have often said the wrong thing. And for fear of a misstep, I often don’t say anything at all. The latter may be the worst sin of all.
Ah – you’ve taken a peek at my list! I hope you never need the info, too, Brandi – you’ve had your own dose of adversity which allows you the insight and compassion to be a light to many.
Thank you for this important message about self-advocacy. And thank you for being you! I’m so proud to call you friend, and I promise never to wrap you in pink ribbons.
I’ll hold you to that! And the proud friend thing is very mutual!
Thanks for your courage and generosity in sharing this. As others have already said, the big lesson is that we need to be our own health advocates and push, push, push. I had a colonscopy this week (yuck). I had to ask five times about different sedation options before I got a real answer and a better choice.
Frustrating, isn’t it? And how many (those less shy than us!) would keep asking?! Glad you took care of that other business, Maria! I took the bullet last year on that and, while it certainly wasn’t fun, it sure wasn’t as bad as the stories I’d heard about it. Some still associate the procedure with drinking gallons of nasty stuff the day prior. Now it’s so much less to drink and one can toss Crystal Light in it to make it less nasty. Colon cancer is soooooooo curable if discovered early – hope this serves as a reminder to someone out there to stop putting it off and just DO it!
Thanks for sharing Shel, surely it will be a blessing for someone. It reminds me how important it is to keep the lines of communication open and make sure we are sharing with
our healthcare
professionals. Just never know who God is using to bless us!!! Prayers and Blessings to you! You are truly an inspiration.
I agree, Donna. And I just saw a FB comment that made sense: it’s important to talk about this with others because there may be more current information than what we can find on our own. Thanks for the prayers, Donna – sure appreciate you and your spouse. (Are you guys doing the Gratitude Challenge??)
No, we both miss the challenge, I will look it up. Take care!
You have a lot of company. I understand wht you didn’t spread the word, but, if I’d known I could have saved you time by sharing my extensive research notebook with you. (We”re lawyers, of course I have a notebook full of research!)
I chosev a similar option that no one mentioned until another lawyer friend read about it in the newspaper. I was shocked at what a huge money maker cancer is! Like Las Vegas, there’s a reason those centers are so large! Mine was 2 years this month- I’m fine and you are, too!
Hey, Deb – if I’d known you walked ahead of me I would have called! You have a notebook because you’re organized. I have stacks. In various places. Lots of them!
It is shockingly disgusting how much cancer profit exists – the Vegas analogy is perfect! Congrats on being two years out – I’m right behind you. Hopefully anybody who sees this and is dealing with a similar situation knows that they have two of us they can call!
Shel:
I truly appreciate you for sharing here. Sometimes lawyers are great advocates for others, but less so for themselves. You give a great example of taking the information and making a decision – for yourself. Thanks.
Agreed, Leah. We’re not accustomed to being in the vulnerable position – it’s rather humbling. But focusing on advocating for others makes this easier to talk about.
Thanks for sharing!! I can tell you that it seems easier for me to jump up and down and ask what is wrong with my child before myself. I should be just as much an advocate for myself.
I agree, Kelly. As Leah said, sometimes lawyers are better advocates for others than themselves – how is that suppose to instill confidence in clients?!
As always, I continue to admire you for so many reasons. Praying for your continued recovery.
Thanks, Cathy – much appreciated!
Wow! Shel. Thanks for sharing. I’ve always felt if I had to go through something like this, I would deal with it the same way, although you never know until you’re in the situation. But this experience and advice is invaluable. Thank you again!
I planned ahead, too and wondered if the plan would be the reality. And for the most part it has because often attitude is a decision. Both my parents are great role models when it comes to challenging times: give yourself a few minutes to talk about it, angst about it, then get on with the day.
Props to you for sharing this info. We all need to know, we all know someone who can benefit from this, unfortunately. Thank you so much!
I agree with you, Mari – more people than we can count walking this path. Thanks for passing on the info!
Thank you for sharing your story, Shel. It never surprises me to hear stories like your own. It’s all about the cost when it comes to health care. We must be our own advocate because no one else is looking out for us. I agree 100{2303b849a176fc4c55cbcb5b49f44c0b6a86ba83e746fb3d962701d1b8d54085} with you, we should NEVER be afraid of hurting a doctor or staff’s feelings, we must be proactive. My prayers are with you, Shel.
Thanks for your prayers, Jill – there is no doubt in my mind that I did not walk this alone. Even after a botched biopsy, a doctor calling me the wrong name, a nurse who was to verbally walk me through the first surgery talking about the wrong procedure, and being greeted for one procedure by a receptionist who handed me a number and said “we don’t use names here,” I fleetingly considered staying at that facility because the surgeon was good and looked at me with sad eyes when I told him I was going elsewhere. Fleetingly. Fortunately a buddy I discussed it with (an RN – I have a lot of good nurses in my life) reminded me that as soon as the surgeon did his part I’d be turned back over to others for the rest. Sanity prevailed and I moved on.
Thank you Shel for giving a voice to a difficult topic. I believe this courageous post will empower others to advocate for themselves.
I hope so, Lisa. One lesson learned for me is we can never be totally prepared, never have ALL the right questions on our lists – it helps to talk to someone who’s walked the path ahead. And then to remember that’s not gospel, it’s insight – one still needs to find the best treatment fit for them.
Shel, you da man, woman! My good friend battled this a few years ago and I want to know if this was offered to her. THANK YOU for breaking your self enforced vow of silence to help us ladies!! You are IRON WOMAN!!
Thanks, Amy. I wish there was a universal expression for ‘made me smile’ like there is for ‘laugh out loud.’ Let’s start a trend: your post MMS! I know more woman are affected than men, but they routinely get left out of the mix (just one more reason the pink ribbon annoys me!)I hope they hear me, too!
They didn’t tell you because it cost “thousands of dollars less.” It’s all about the dollar. And, how is it that Canada, where all that horrible socialism exists, has it and we don’t (for 15 years)….because it’s all about the dollar here. Canadians love their health coverage. It’s better than ours, no matter what Fox says. Sorry for what you went through, and are going through, but we’ve ALL got to start being honest about health care: It’s not a commodity. It’s health.
Being about the extra dollars was the only conclusion I could come to, also, Geary. I didn’t intend to make a political statement by mentioning Canada and I don’t have any firsthand knowledge about how their system is working – I was just quoting what was said to me. Clearly you have strong feelings on the subject and I appreciate you taking the time to comment.
Thanks for sharing, Shel. This is so valuable and I’ve shared it with my FB and Twitter friends. You are a trooper!!! And, a very good blogger.
Thanks, Jennifer. And ‘a very good blogger’? Golden coming from you, Jennifer! I’m hoping to take your Blogging Bootcamp next month to get better at it!
Hey! If you go, I’ll see you there! I’m totally in. Bought a new notebook & everything. 🙂
Great! Save me a seat if I’m late!
You are one heck of a woman!!!
As are you, Kristel – my hat’s off to someone who can deal as effectively as you do with the ‘smiling’ public! Thank you.