a starting place

Having your wife (or another important woman in your life) diagnosed with breast cancer feels like you’ve been hit by a train.

In that instant, you know your lives have changed forever. But as her support, it’s hard to know how to help. You may even feel powerless. She and you are on a crazy roller-coaster ride. It’s definitely hard and this ride sometimes feels like it will never end, but I promise you will get through it.

When my wife was diagnosed with cancer at age 32, the very first thought that came to me was “I have to be there for her.” I couldn’t imagine her dealing with this by herself. I was committed to helping her navigate this, but we both didn’t know where to start. That’s what I hope to give to you, a starting place.

This webpage exists to give you, the loved one of a woman recently diagnosed with breast cancer, a place to know quickly what to do at the beginning of this troubling time. I’ll summarize the major steps involved in the ride and link to the resources I found most helpful to my wife and me.

Panel 1

your main job

Your top priority is to be there for your wife and to listen to her. This is 80% of your responsibilities. The other 20% is taking things off her plate.

Do more for her; cook, do chores, schedule events with friends, pay bills. Understand her insurance and don’t hesitate to call them with questions and to challenge what looks like unfair bills.

Let your employer know you will be going to her appointments and need days off, half days, and times where you will be working from home. Go to every appointment… unless she tells you not to come.

Buy an accordion folder or binder! Before every appointment talk with her and make a list of all the questions you want to ask and bring them with you. At the end of the appointment, it’s your job to ask any uncovered items on the list. When you go to the appointments keep notes on everything and place them as well as receipts in your binder.

Be positive. It’s important for you and her to focus on the positive. Make sure to take her out on dates. One of the best times to go is during time periods where you are waiting for test results or your next appointment. Get her gifts occasionally, make her special meals, buy her flowers. Make it your duty to do nice things for her.

I highly recommend getting the book BCH.  My favorite quote from the book was the reminder of my top three priorities. “Giver of moral support, note taker, keeper of the question list.” Seems kind of silly, but those are your main roles.

Panel 2

plan your attack

Understanding her diagnosis

You will meet with doctors and have tests to understand her breast cancer treatment options and to make a plan for treatments.

By now (or very soon), you should have learned about the tumor’s grade, stage, hormone receptivity, and if the HER2 gene is present.

My go-to resource for GRADES.

My go-to resource for STAGES

My go-to resource for HORMONE RECEPTIVITY

My go-to resource for HER2

Genetic testing

My go-to resource for Genetic Testing.

Scheduling Surgery

You will also need to schedule surgery soon, but you don’t need to rush it. Typically, cancer is slow growing. It’s often better to have some time before her surgery so you can understand her unique situation and treatment options. That way, you can make the best decisions. In my case, my wife scheduled her surgery five weeks out after her diagnosis, then set appointments with her doctor team to form our exact game plan.

For us, the biggest decision for surgery was to get a lumpectomy or mastectomy.

Learn the options of each treatment.

Survival rates show that there is little difference between lumpectomy vs mastectomy.

What questions to ask as you plan

It’s important to hit the balance of researching enough to be well equipped but not to get caught up in over-researching. Your goal with research is to learn enough information to ask the right questions to your doctor team.

Here are some questions you’ll want to answer in your first few appointments:

  • What kinds of treatment are involved?
  • Is chemotherapy recommended?
  • Is lumpectomy or mastectomy better for our case?
  • Will reconstructive surgery be needed?
  • What other types of testing can we expect?
  • How will this affect our plans on having children (if you were planning)?
  • Other questions you could ask
Panel 3

form your team

You will be working with a team of doctors and specialists through your treatment. You will often start (and may have already met) with a surgeon and hopefully also a nurse navigator. Your nurse navigator should be someone who is there to answer any questions and provide you guidance throughout the whole treatment experience. Utilize this person. Confirm assumptions, ask for their opinion or ask for referrals to other doctors with them.

Your surgeon will explain the entire treatment process with you and often refer you to other doctors. Your surgeon will also make recommendations and should be giving you enough information to make good choices for her treatment. You especially want your surgeon to be someone who specializes or devotes much of his/her practice to breast diseases.

The other members forming your team will be: a radiologist, oncologist, fertility specialists (if you plan on having children), and a plastic surgeon (for reconstruction if having a mastectomy). Departments don’t always communicate together. It is vital to take notes, keep documents and records in a binder, understand next steps, and confirm action steps between departments.

Remember, you don’t have to stay with the first doctor you talk to. No doctor should tell you what to do, but should only make suggestions. They should be sympathetic, knowledgeable and encouraging.

Don’t ever let a doctor talk you into a decision you don’t feel comfortable with and you should always seek a second opinion if you are ever unsure.

This is your wife’s life and you need to be determined to choose your best options. If anything about a care provider doesn’t sit right with your wife, seek another practitioner. Who you chose as your doctors (like every choice in treatment) is your wife’s decision. You should always offer your thoughts to her, but she is in charge. You are supporting her and her decision.

Line up second opinions right away so you don’t have to wait weeks between doctors. Set up your appointments early and be okay to change or cancel depending on circumstances.

Panel 4

the people on the outside

Letting Friends and Family Know

Letting our loved knows know about the diagnosis was difficult. You will get a range of emotions and responses. For some people, they might not know how to react or become uncomfortable themselves that they almost ignore the conversation or change the subject. Keep in mind up front that often times people don’t know how to handle it and may react strangely. Don’t get caught off guard from weird reactions.

People may end up being overly involved in your ride, especially for your close friends or family. It’s hard enough for you and your wife to learn about her diagnosis, but relaying updates over and over again to people who are asking you could be too much for her. If someone is asking too much about diagnosis details, you have every right to redirect the conversation to focus on supporting your wife. Consider selecting someone to be your update person, perhaps a family member, that you update with medical news and they can share that with your circle rather than you or your wife.

Unless people went through cancer themselves, they cannot relate or understand what she and you are going through.

The response you’ll get most often is “let me know how I can help.” In most cases, people don’t know how to help so it is your duty to let them know how to help you. And please, direct them on how they can help. I tried doing a lot for myself, and in hindsight, I wish I told more people how to help us.

Here are a few suggestions to ask people how to help:

  • Help with making dinner or other meals
  • Help with cleaning the house
  • Help with taking care of kids (if you have any)
  • Help with chores like groceries, sorting through mail and bills, and errands
  • Suggesting and organizing fun activities
  • Be a supportive listener for your wife and you. You and your wife need people to talk to. Your listeners should not give advice, just to listen and be sympathetic.

From my experience, offers of support never came to fruition or things went “back to normal” after active treatment is complete. Do your best to not take offense from this personally. Again, people can’t relate or understand until they go through it themselves.

Dealing with other people

People are strange. When you interact with acquaintances or strangers and the subject of cancer comes up, often times they feel like they have to say some sort of comment in an effort to try and “help” you or offer advice. I can recall only a handful of helpful of interactions, but for the most part, the conversations were annoying or even harmful. We were told horror stories, people saying they know how we feel (YOU HAVE NO IDEA!), explaining what caused the cancer, or telling us the magic cure.

You have the perfect get-out-of-jail-free card, so use it. Play the card. Excuse yourself from uncomfortable situations. You have every right to say, “I don’t feel like talking about that now.” It’s better than punching someone in the face.

Panel 5

be there for yourself

Sometimes you will feel frustrated and overwhelmed, but you need to take care of yourself. You can’t afford to burnout.

Keep up with your hobbies or try new ones. Keep good company, read inspiring stories, exercise. Keep positive. Make jokes you can laugh at or else you’ll go crazy.

Find a therapist who has experience in working with cancer patients. As your loved ones go back to life as normal after active treatments are complete, you and your wife will have to figure out settling into your “new normal.” Therapists can be helpful during this transition.

One last thing to keep your sanity is to get out with your friends. Just you and the guys. Or just you and your mentor. Try to schedule it so your wife doesn’t stay home alone. Aim for her to do a girls night and for you to do a guys night. This will be a nice way for you both to recharge your batteries and get out of cancerland for some time.

Be strong over the next few months. It is very challenging and you might not see it now, but it does get easier.

Thank you for being such an important part of her life and for taking up the cause to support her. If you have any questions or just want to talk, I’m available for you.

Email me here to get in touch.

Resources

Here are the top resources that helped me: