This isn’t supposed to happen to a woman under 40!

This is the excerpt for your very first post.

Having your wife (or daughter or girlfriend) diagnosed with breast cancer at a young age feels like you’ve been hit by a train. And as the supporter, it’s hard to know how to help. You may even feel powerless. She and you are about to go on a crazy rollercoaster ride. It’s going to be hard and this ride sometimes feels like it will never end, but I promise you will get through it.

From my experience, there are four main phases to this ride:

First is accepting that there is a new reality. You never go back to “normal” after diagnosis. What you will do is work together to create a “new normal”.

The second phase is learning about BC and understanding what her best options and treatments will be.

Then there is going through the active treatment of surgery, maybe chemo and radiation.

The last phase is long term treatment that may include hormonal and lifestyle changes.

 

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. In an instant, it forever changes your lives. I was committed to helping her navigate through this, but we both were starting from zero. As most breast cancer patients are post menopausal and many resources for BC are targeted for women in their 60s, my wife and I had to learn much of this on our own. Going through breast cancer is challenging, but going through breast cancer at a young age is even more challenging.

This webpage exists to give you, the loved one of a young woman recently diagnosed with breast cancer, a place to know quickly what to do at the beginning of this troubling time.

 

Here is what to expect over the next few days:

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.

The Grade, represented on a scale from 1 to 3, describes the difference between the cancer cells from that of normal and healthy cells.

In general, the lower the grade number, the better. Grade 1 cells are the least different from healthy cells. But the higher the grade, the more the cancer should respond to treatments such as chemotherapy and radiation therapy.

Stages ranges from 0 to 4 and is based on the size of tumor and locations where it is present. As in grades, the lower the number the better.

Learn more about her stage and treatment options here:

The pathology report includes the results of any Hormone Receptivity for estrogen (ER+) and progesterone (PR+). If the report does indicate that it its receptive to either or both, it suggests that those hormones may promote unhealthy growth. This report will help determine if hormonal therapy, which reduces hormone exposure (like tamoxifen), could be beneficial in long term treatments.

Cells with the HER2 gene tend to grow and spread faster. So if the gene is present your doctors may want include treatments with drugs that target that specifically.

 

Scheduling Surgery

You need to schedule your surgery soon but typically cancer is slow growing, so you don’t need to set up surgery immediately. In fact it’s better to have some time before her surgery so you can understand her unique situation and treatment options, and 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.

A lumpectomy is removing only the tumor and some surrounding tissue (called a margin). This procedure focuses on breast conservation.

A mastectomy is the removal of the whole breast. Usually recommend in larger tumors, existing family history, or anything else that greatly increases chance of recurrence.  It’s a much larger surgery and longer recovery time, thought some women may even choose a mastectomy just to limit their worry about recurrence.

Survival rates show that there is little different between lumpectomy vs mastectomy

Learn the options of each treatment.

During the surgery, several lymph nodes will be taken to test if cancer is present. If present in the lymph nodes, it could suggest that it might travel into other areas of the body and chemotherapy might be a good option to help control that.

 

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.

You 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 don’t have to stay with the first surgeon you talk to (or any other doctor for that matter). Especially for your surgeon, you want to be with someone who dedicates a lot of his/her practice to breast. If anything doesn’t sit right with your wife, she should seek another surgeon.

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)

The choosing of doctors (as well as every choice in treatment) is your wife’s decision. You should always offer your thoughts to her, but she is in charge and you are supporting her and her decision.

No doctor should tell you what to do, but should 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 her life and you need to be determined to choose your best options.

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.

Departments don’t always communicate together, so it is vital to take notes, keep documents and records in a binder, understand next steps, and confirm action steps between departments.

 

Genetic Testing

You may be encouraged to have genetic testing, mostly to detect BRCA1 and 2. People who test positive for BRCA1/2 have an increased risk of breast cancer and could be shared among her family members. This information will be used to help the doctors understand what treatment options may be best as well as if other family members of your wife’s should also be tested.

 

Questions to Ask in your first few appointments

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 of researching is to learn enough information to ask the right questions to your doctor team.

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

  1. What kinds of treatment are involved?
  2. Is chemotherapy recommended?
  3. Recommend lumpectomy or mastectomy?
  4. Will reconstructive surgery be needed?
  5. What other types of testing can I expect?
  6. How will this affect our plans on having children (if you were planning)?
  7. Other questions you could ask – https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/breast-biopsy/questions-to-ask-before-a-breast-biopsy.html

 

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’s 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

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 mostly annoying. 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 excuse, or 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”.

 

Your main job

Your top priority is to be there for your wife and to listen to her. In addition to that, you need to take 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.

My favorite quote from BCH 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.

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

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.

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 it may not feel it, but it does get easier. Thank you for being such an important part of her life and for taking it up to support her. If you have any questions or just want to talk, I’m available for you. Call me at 484-894-9738.

 

Resources

Here are the top resources that helped me:

 

 

 

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