WASHINGTON, February 3, 2014 —I found a lump.
I wish I could say I felt it when dutifully performing my monthly self exam but that would be a lie. Not only was I not concerned enough to be doing a self exam, it was not even the first time that I felt the immovable, pain free lump in my right breast that would completely change my life. I know that I had found it before but the complete and paralyzing fear that made it possible for me to convince myself that it was some bizarre breast muscle that I had suddenly developed also has wiped the memory of when the first discovery was made from my mind.
Being diagnosed with stage II breast cancer at the age of 44 with no family history and not one high risk factor outside of being born a woman, felt like driving into a brick wall at about 100 miles per hour.
There was what seemed like endless tests and doctors appointments with knowledgeable, compassionate physicians but every time they opened their mouths to speak it sounded like one of the teachers from the old Charlie Brown cartoon, “cancer, mwa, mwa, mwa, cancer.”
The overwhelming feelings of being diagnosed with breast cancer are added to as a patient is thrown into a world of terms and decisions that they are completely unfamiliar with and a world that they would give anything to be able to escape from.
The breast cancer journey takes years to complete. And although the typical standard treatment is similar for all women, everyone approaches it and comes out the other side in their own way.
There are women who called their family and friends before they left the parking lot and others who waited weeks to tell anyone. There are woman who waited to make doctor’s appointments until they had their emotions under control and others who stood in the radiologist’s office the day of a suspicious mammogram until a biopsy was performed. There is a woman in Northern Virginia who has a pink ribbon tattooed on her shoulder and another who has purged her entire home of the color pink because it reminds her of being sick.
After being diagnosed with cancer, I found myself being put in contact with other women who were also dealing with their own diagnosis until I found myself surrounded by a supportive and knowing network.
All of these women, young or old, short or tall, thin or fat have two things in common; they have a long list of things they wish they would have known when they started their cancer battle and they continue to survive today.
Here are the top five things breast cancer survivors wished they would have known and done:
Get your annual mammogram
It might sound trite but every women except one, spoken to for this article believe that a mammogram either saved their life or would have made their treatment easier and more successful.
The National Cancer Institute at NIH’s fact sheet on breast cancer states that mammography is the best tool available to detect cancers early and therefore have the best chance of reducing the death rate from breast cancer.
Breast cancer grows. Sometimes it grows fast. The difference between treating the earliest phase of breast cancer verses a much later stage is night and day.
A Northern Virginia breast surgeon explained the progression of breast cancer this way; think of the ducts of the breast as a straw. If you start putting something into that straw, at first you can get rid of the whatever is in it by just cutting off that one part but if it keeps getting more and more full then the side will split and the stuff inside will pour out. That is how ductile cancer works and the “stuff” is the cancer.
As soon as the cancer leaves the ducts, it starts looking for a way out of the breast and into the rest of the body.
If a mammogram is preformed when it is still in the ducts, often times a simple surgery can be done to remove the cancer.
If the cancer is allowed to grow and leave the breast, chemotherapy will probably be necessary. If the disease spreads to parts of the body other than the breast and lymph nodes, the patient can be treated but never cured.
Some women avoid mammograms due to the discomfort of having their breasts squeezed flat by the x-ray machine. One breast cancer survivor, Erica Thompson, answers that by explaining, “In order to reconstruct my breast after they cut it off, a plastic surgeon then took a piece of my stomach and stretched it, while still connected by the tissue for a blood supply, through a tunnel made inside my body and then popped my stomach out the hole where my breast used it be. Talk about pain. I’ll take 30 seconds of squeezing in order to avoid that process any day.”
This is all about you
If you are not the type of person who is comfortable speaking up or being pushy, then bring someone to your appointments that is.
The initial tests, appointments and decisions are some of the most important a newly diagnosed patient will ever have and if there is anything unclear, good decisions will not be made.
Ask questions over and over until everything is crystal clear.
When Thompson left her initial appointment, she asked her husband if he understood what the doctor was talking about. He shrugged and said “I think she said something about the television show N.C.I.S.”
The doctor was actually talking about DCIS, cancer that is still inside the ducts, but neither of them ever asked.
This is not a popularity contest, it is your life.
Many women are taught to be reserved and polite; those rules do not apply after being told you have cancer.
If something does not seem right, let your team know or go to a different physician. Val Griffith had a biopsy done after a mass was found on a routine mammogram. When she received the news that it was benign she was relieved but something did not seem right to her based on what was being said when it was first noticed. Griffith let it go because who would not want to hear “no need to worry”? Months later she received a call informing her that the labs were mixed up and she did actually have cancer.
“If something doesn’t seem right, find someone else” says Griffith. “I don’t know if it would have made a difference but months went by when I was not having treatment.”
Find the team that you trust 100 percent; you are literally putting your life in their hands.
You may be directed to the best oncologist in the area but if you are not comfortable with them or do not like them, find someone else.
Always be kind to others
One survivor said that cancer has made her think of every time that she was impatient or unkind to others and she has realized that you never know what someone is going through.
This became clear to her on the first day that she had chemotherapy. “You could say that it was one of the worst days of my life. I had finished my first treatment and was waiting to see what effects the poison that was making its way through my body would have.”
“It was a windy day, and on my way home from the infusion center, I stopped at the grocery store because I was told to eat as soon as I could because I might not be able to for the rest of the day. I hadn’t started to lose my hair so I looked like I always did.”
“When I was putting my groceries in the back seat of my car, the wind caught my door and opened it further and bumped the van next to me. Don’t get me wrong, I know my door hit the van and although I did not see any damage I was getting paper out of my purse to leave a note when a man came out of the van and started yelling at me before I could say anything.”
“After he looked and saw no damage on the van he just walked away but continued to glare at me. I was having a really crappy day and the same thing could have been accomplished even if he was just a little kind to me.”
No one is being forced to offer help
If someone offers to help you out, let them.
“Accept the offers of help”, says Angela Stewart who found herself battling breast cancer twice within a five year period. “Family and friends really do want to help.”
Chemotherapy and radiation can cause fatigue like most people have never experienced. It is not an issue of being tired, it is having such weakness that walking across the kitchen is more than a body can handle.
Even if you find yourself able to do more than most who are going through treatment, it is so nice to have a meal brought to you every once in awhile and it makes your loved ones feel good to be able to help.
When I was in the middle of treatment a neighbor came over and sat down to visit. My house was a mess, I was exhausted, sick and bald and not sure about wanting company. She told me about how her oldest son was heading off to find his fortune playing poker in Los Vegas. Laughter filled the house for the first time in months. That visit was a wonderful gift.
They cannot take the cancer away but at least they can go to the store for you or make a meal. Or even sit with you during a treatment.
Nothing is irreplaceable
Hair and breasts, it is hard to imagine life without them.
Finding out that the best chance of beating cancer will include the removal of a breast is always a shocking revelation.
Depression and loss of sexual identity are some of the common emotions women experience when a mastectomy is first brought up but speak to your doctors. There are so many reconstruction options these days, it is no longer the disfiguring surgery of old.
Another concern women have about the prospect of losing a breast is how their spouse will deal with it. Talk it out with them, make decisions together. One husband surprised his wife by explaining that he had thought about it and realized that if he ever had to go to war and lost part of an arm, she would not stop loving him and as far as he was concerned, it was exactly the same. It was just a body part.
The word of warning on breast removal; no matter how good the new ones look, the feeling in them will be gone. The nerve endings are cut and the surgery sites are totally numb.
As for losing hair if you need to have chemotherapy. It will grow back, it is only hair. “After a lifetime of extremely long hair, I found being bald a bit freeing. No more bad hair days,” jokes Leigh Harmison. “And when it grows back, you may find you like your hair in a totally different style that you never had the nerve to try before. Besides, hat and wig shopping can be a lot of fun with the right friends. Go blonde or red. Why not?”
The word of warning on hair loss; you lose all of it. Legs (good), under your arms (good), eyebrows and eyelashes (not so good).
All of the women who were interviewed had additional thought that could not be prioritized, so here are some helpful closing points.
- Go to the doctor, chances are it is something other than cancer.
- When people find out you have had breast cancer, they will immediately look at your breasts.
- Insurance has to pay for reconstruction. It is the law.
- A day will come when you will think about something other than cancer all day long. Around a year and a half.
- You are stronger and braver than you ever imagined yourself to be. I am awed by watching patients walk into a chemo room with a strong stride and their head held high when they know what is there to meet them.
- You will be a different person after having gone though something so hard. Some say that there is a darker part to them having faced death but most say, they are better people than they were before.
- If given the opportunity, buy something pink or walk and run for a cure but also remember that there are many other cancers that have not had as strong public campaign and therefore have not received as much research funding. So next time you buy something pink, also consider buying something gray, blue or purple for a cancer cause as well.
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