So many of us don’t know what to do or say when we find out someone we care about has cancer. My ongoing experience with breast cancer has given me an opportunity to find out first hand what was helpful, and what not.
Before I get to my list of what NOT to say to someone who tells you they have cancer, let me put things in context. First, some of the things I suggest you don’t say may be appropriate in a flushed out conversation with someone you love. It’s my opinion they’re not helpful as a first response when someone tells you they have cancer.
Second, if you recognize something you said to me on the list, please know that I was not offended (with the exception of number 7) and I knew it was coming from a good place. I’m just saying it wasn’t helpful.
What NOT to say:
1. How old are you? The lawyer in me mentally responded: “Objection! Lack of relevancy.” The implication is if you’re old enough, it’s okay that you have cancer. It isn’t.
2. How long had it been since you’d had a mammogram? Why don’t you just ask me if I brought this on myself?
3. Can’t you just lop them off and be done with it? Uhm, I’m pretty sure it takes longer to do than to say. No trauma there, right?
4. It’s not a death sentence. Death? I was focused on surgery, radiation and whether or not I’d need chemo. Oh, crap – I could DIE.
5. Call me if there’s anything I can do. You know I’m not calling, right? No matter how sincere the intent of the offer, it’s vague to the point of meaninglessness. (See suggestions for specificity below)
6. Nothing. It’s what many of us say when we can’t find the right words. It’s better to say something to somebody we care about, even if it comes out a little clumsy, than to pretend cancer doesn’t exist or have them think it doesn’t matter to you.
7. How can you keep walking around with that growing inside of you? This was said in response to me telling someone I was going to take some time to think before making a decision on my course of treatment. Saying nothing would have, indeed, been preferred to this ugly statement. As my mother may have said, if you can’t say anything nice, don’t say anything at all. As I wanted to say . . . never mind. Suffice it to say I’m not as nice as my mother.
Here are some things people said that were well-received. A couple even made me smile.
1. I don’t know what to say, but I want you to know that I care. Is there a more honest, sincere summary?
2. I’m sorry you have to deal with this. You’re acknowledging their struggle and letting them know it matters to you.
3. I hear you have some big challenges, you’ll be in my prayers. Only say this if you truly will be praying for them.
4. Cancer sucks. An expression I’ve always avoided because of its crassness suddenly seems appropriate. Cancer sucks – it just does.
5. Could you use a second set of ears at your next appointment? People can get emotional when discussing diagnosis and treatment and sometimes don’t hear or fully process all that is said. It can be helpful to have along someone who has more objectivity. It’s a bonus if they are in, or have a good understanding of, the medical profession – they may think of questions the patient didn’t ask.
6. Can I call you in a couple of days and touch base? This acknowledges it is an ongoing situation, lets them know you’ll be there for them, and displays sensitivity with regard to the unknown of whether or not they want to talk about it.
7. Mommy will kiss it and make it all better. “Mommy” is 87 and lives in Florida. I’m 54 and live in Oklahoma. It not only made me smile, it left me with an overwhelming desire to jump on a plane. Never underestimate the healing power of a mother’s love.
8. Can I drop off some dinner – I’ll just leave it on the porch. Dear friends wanted to do something for me the day of my first surgery and offered to bring dinner. They knew I probably wouldn’t feel like interacting with anybody that day, so they made sure I knew they didn’t intend to stay and visit. I told them I appreciated the offer, but no thank you. They brought it anyway – complete with simple freeze/thaw/heat directions to be had at our convenience. It was delicious.
9. Can I (put SPECIFIC offer here)? Telling someone to call you “if they need anything” puts them in the position of asking for a favor. Be specific in your offer to help. Here are suggestions that may be helpful over the course of illness and treatment:
In addition, one can’t get too many cards and positive notes (email and Facebook count) when they are dealing with challenging circumstances. You don’t have to say something profound. A simple statement like: “I want you to know you’re in my thoughts and prayers” will be well-received. Not the praying type? How about: “I wanted to let you know I’m thinking of you and wishing you the best.” It truly is the thought that counts – and following up on that thought.
If you have suggestions for other things to say – or NOT to say – upon hearing a loved one has cancer, please share it in the comment section below.
Now that I’m out of the ‘cancer closet,’ I’d like to share some of the tips I picked up from the experience. None of this process is fun, but it can be less difficult.
1. Get the deodorant before it’s necessary. The day before radiation treatments started one casually mentioned to me that most deodorants contain metal and could irritate the skin during this process. An exception was a brand called “Tom’s” that might be found at Walmart. You’re just now telling me this? (To be fair, it may have been stated somewhere in the bubblegum-pink Texas-sized tote bag they gave me full of pamphlets, but by the time I received that I was so sick of reading about cancer I shoved it behind a couch to dim its pink glow). I finally found Tom’s. It was reminiscent of citronella. Good – I’d smell better while not having to worry about armpit mosquito bites. Find organic options ahead of time and have one on hand.
2. Weird changes are normal. I expected things to look and feel different once radiation started, but wait – there’s more! If, like me, you have a sense of smell so acute you can detect a potato rotting a week before the skin is marred, you may notice an enhanced aroma from the radiated site in a: “What the . . . is that me?” sort of way. Yes, it is. Pass the citronella please.
3. “Breast cancer is not an emergency.” So says Deborah Capok, M.D., surgical oncologist at Memorial Sloan-Kettering Cancer Center. After I was diagnosed, some were shocked that I took weeks to make a decision about the type of surgery and treatment I wanted to pursue (more on that unpleasant bit Monday). I was heartened to see an article wherein Dr. Capok advocated taking the necessary time to gather information and look into all treatment options.
4. Find out your ointment options before the burn. Prior to starting radiation, a Cherokee woman relayed to me that she successfully minimized the burns by using milk from the aloe plant as soon as treatment began. She said one could use aloe gel (found at health stores) as an alternative. So I stocked up on aloe gel and used it liberally from the first day on. I was told repeatedly by radiology staffers that my skin looked good at different stages – not as bad as many they had seen with the same amount of treatments. As the skin got a more vibrant pink (that blasted color is everywhere) the doctor said it was time to talk about lotion options. I told her about my aloe gel regimen and she was fine with me continuing with it because it was working well for me. I asked why this subject wasn’t discussed early on so one can take a preventative approach. She said: “Most women use a topical cream daily in those areas so it’s not necessary to discuss it until there’s a problem.” Oh. Either I’m not like ‘most women’ or she’s mistaken. I’m going with the former explanation, because to prove her wrong I’d have to ask ‘most women’ a question I have no intention of asking.
5. Protect what’s vulnerable. Areas of skin in ‘folds’ are more susceptible to intense burn reactions. A staff member made a suggestion that worked for me. Put a soft rolled-up tank top (or other small fabric item) under the breast and under the arm when sitting around the house. I’m not talking armpit here – I’m talking about that baby-soft place on your side (between armpit and ribs) that only sees the sun if you’re a beach volleyball player. The point is to keep skin-to-skin friction at a minimum. Because it’s harder to secure something under the arm, I didn’t buffer that location as much and paid the friction price!
6. Keep it moving. As the skin burns, it shrinks and tightens (remember that nasty sunburn you once had?). If you don’t push through a little discomfort to stretch the skin, you are setting yourself up for a painful event. I asked the doctor if swimming was okay and she said that was a great choice – anything that kept that arm and skin moving on a regular basis. She added that I shouldn’t overdo it by lifting weights. Whew! I could now justify deleting “joining the gym” from my yet-to-be-done 2013 New Year’s Resolution List – doctor’s orders!
7. Contribute to a pleasant environment. You already know that having a positive attitude will serve you well in difficult times. There are things you can do to make the experience as positive as possible. As one dear friend says: “Less bad is good.”
I’m shooting for Monday to wrap up this impromptu mini-series on cancer with my promised list of what to say, and what NOT to say when someone tells you they have cancer.
Well, above are a few things that helped me. If you have tips or suggestions, please share them with us in the comment section below.
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.