Our Family History Lessons

Between breast cancer being so prevalent in our family history and my being female, you would think that breast cancer would have been discussed openly with me from an early age. It wasn't. For whatever reasons, people didn't talk about it.

When I was young and asked questions about our family history, all I was ever told about my great-grandma was that she had bone cancer. I remember visiting her in a home where she used a pull-up bar to lift herself off her bed enough to get off her back for a few brief minutes. And yet through what looked to be painful to me as a child, I remember her talking and smiling whenever we went to visit with her. I remember shortly after that, attending her funeral...and still, no one mentioned breast cancer. My only guess is that it just wasn’t "polite" to discuss anyone's breasts. It was years later before I found out that it was originally breast cancer.

Next was my grandma. She was diagnosed with breast cancer in her 50's and had a mastectomy, but again, no one mentioned she had breast cancer. So when did I become aware? That would be the night we stopped by my grandma's house to have dinner and check in with her and my mom and I found her lying across her bed. She'd been there for two days. She was dehydrated and "out of it" mentally. Even with the upset of finding her that way, mom and I (as always) found the humorous side of the situation.

Sometimes Only a Sense of Humor Will See You Through

Leaky Pipes?

I was speaking with my grandma while my mom hunted down a doctor to call. My grandma saw a shadow on the ceiling and asked me where the water leak was coming from. I explained that it was the shadow castings from the lights (that seemed to keep her from wanting to call the plumber, at least for the moment).

Pregnant at 60?

Then my mom came to the door, asking grandma who her doctor was. Grandma gave her a name to which my mom replied, "that's the doctor who delivered Carl mom." (Understand that Carl is my mom's brother and was probably around 35 or 40 at the time). My grandma stated confidently, "well, who else do you think you should call when I'm having a baby?" Mom and I chuckled and mom went back to searching for a non-OB-gyne.

Is She Drunk?

As I sat talking with my grandma, she again asked about the "water stains" on the ceiling. I told her again that it was just shadows. She reprimanded me and let me know that while she may have had too much to drink, she indeed was not so drunk as to not know the difference between shadows and water stains. Thankfully, my mom came back into the room at that point. She had located the doctor's number, called him, and was told to meet him at the hospital.

Where Did You Come From?

As she stood there, all of a sudden she introduced me to my grandma as her granddaughter. My grandma looked at me as if I'd been out of the room until that very moment, grabbed my hands, and delightfully let me know how wonderful it was to meet me. These are the moments my mom and I learned to look back upon with smiles on our faces.

The Non-Humorous Side

The not so funny part of this story was that my grandma's breast cancer had metastasized to her brain. She had a brain tumor that was interfering with her thought processes. The doctors did surgery to remove the largest part of the tumor they could, and then began the chemotherapy and radiation. I remember going to the hospital for the outpatient therapy. I remember the burn marks she had on her throat. I remember her wearing a turban because she’d lost all of her hair.

But because no one would talk about it, I still didn’t quite understand what was truly going on, with the exception of the "humor as usual" (another trait passed down through our family history maybe). Conversations with grandma became very easy. We knew that all we had to do was answer three or four questions, sit quietly for a couple of minutes, then repeat the process (for those of you without a sense of humor...we offer our apologies...but it doesn't make it any less true!)

My grandma stayed in her home for as long as she could, with mom and I taking lunches and dinners to her so she wouldn’t have to cook and we could make sure she was doing ok. Then one day, we showed up with lunch in a bag (ie. Fast food) again, and my grandma had set the table with her best china, silverware, and glasses. She told us that dinner wasn’t quite ready, but that the roast would be done soon. Then she went to check on it, found that there was nothing in the oven (which was heated to 400 degrees), and apologized for not having actually put it in to cook (which was just as well considering our family history scrapbook doesn't contain a lot of Julia Childs type photos). That was the week my mom began looking for nursing care for grandma.

Tough Decisions

To make a long story short, we went through two nursing homes that provided substandard care at best (they even went so far as to wrap gauze on my grandma’s ankle that did NOT have the open wound on it while leaving the sore one wide open!), and one that was ok as far as nursing homes go. At that time, the doctors had diagnosed my grandma with having roughly 12-18 months left to live. My grandma gradually got worse during the first 12 months, then got to the point where she didn’t recognize us. We had a funeral 10 years later. During the last 8 years of her life, my mom visited my grandma nearly every day, even though she no longer even noticed her in the room. I remember my mom talking about quality of life versus quantity and how her preference was definitely quality.

Mom Gets Diagnosed

As if our family history wasn't bad enough, in October of 1994, my mom was diagnosed with breast cancer, just 8 years after her mom died. She had gone into the doctor to have (yet another) lump removed to see if it was cancerous. The test came back negative, but the doctor told her that there was something bothering him about it so he wanted to take another look. He told her not to worry, because there was less than a 1% chance of anything being wrong. He ran more tests. This time they came back malignant. Less than one week later, my mom was having a modified radical mastectomy.

We discussed (or should I say mom let me know) after the surgery, that it went well and that the Surgeon had referred her to an Oncologist to discuss her treatment options. She saw the Oncologist that week. After discussing various options, mom decided to take Tamoxifen without doing chemotherapy. The Oncologist told her that the chemo would only increase her chances of preventing metastasis by 10%, and that (even combined with our family history) wasn’t enough for my mom to consider chemo. Again, she was always about quality of life, not quantity.

Given our family history, my mom didn’t believe the chemo would stop the cancer. She had seen her mom go through it and believed that the chemo hadn’t changed the outcome. In her eyes, it simply slowed the cancer down enough to give her mom another 8 years of living in a nursing home without knowing who or where she was (NOT a life my mother wanted or a chance she was willing to take). She also didn’t go back to the Oncologist because she felt that she was more interested in the “cancer studies” than in my mom’s care. She went back to her surgeon, who prescribed her Tamoxifen, and then began scheduling her for follow up visits every six months, rather than referring her to another Oncologist.

Learn to Trust Your Intuition

In January of 1996, I remember having a conversation with mom when we were on our two mile walk. She mentioned that she hadn’t been feeling well...that something wasn’t “quite right”. I asked if she’d spoken to her doctor. She said yes, and he told her everything was fine and that it was just side effects of the Tamoxifen. I suggested (given our family history with doctor errors) that she get a second opinion. She told me that she trusted the doctor, would consider it, but that maybe there were just some things that didn’t want to know. My intuition told me to push the issue, but the “little girl” inside me who respected my mom, told me to mind my manners…so I did.

In August of that same year, mom mentioned in passing on the phone that she was having a tough time catching her breath. She came to visit so we could go shopping, and at the end of the day, said she felt better than she had for some time. She figured that it must be stress that had been making her feel bad lately. Once again, I recommended a doctors visit. She said she had an appointment set up that week, so I left it at that.

Get Another Opinion

That week, the new doctor began running tests. When I asked what they were looking for, mom told me they thought she might have irritable bowel syndrome (IBS). I laughed and told her to go find another doctor, inform them of our family history, and tell them to look for the cancer. The reason I laughed is because my mom did low impact aerobics and walked two miles per day seven days a week, and had lived on a high-fiber, low-fat diet for years. The chances of her having IBS were slim to none (and no, I’m not a doctor…I just knew my mom). She told me to leave it alone and she’d let me know at the end of the week what they had found out, if anything.

By Friday when I called my mom, she told me she couldn’t get from the house to the back patio without being completely winded. It was as if she was being poisoned. The doctors had run MRIs and x-rays, but still no tests for cancer (but the IBS test was negative, so that was a plus...yeah right!). We were sitting on a holiday weekend, so the doctors had told her they couldn’t do anything more until the following week. That’s when I finally got angry enough to stand up to my mom.

I found out from her who her doctor was and that she was an Internist. I hung up the phone, called my internist to let him know about our family history, what was happening to mom, and to see if he could do anything for us. He said to get all her records, bring her to the hospital (we lived an hour and a half away from my mom), and page him. He would admit her and find out what was going on. Then I called my brother (who lived three hours from her) to find out if he knew mom was sick, and whether he was willing to drive home to assist me if she wouldn’t go to the hospital willingly (my mom was 5’10” tall...I’m only 5’6”, but my brother is 6’1”...I figured between the two of us, we could get her there). :)

What was funny is that my brother couldn’t understand why mom hadn’t told him how sick she really was (no offense guys, but what is it about being an only son, and the “baby” of our family to boot, that he didn’t understand?...and what’s with the moms who protect them but are willing to throw it ALL on the older child...just little things I intend to discuss with her when I see her again). :)

I drove home, picked up my mom and all of her medical records, then drove back home and had her admitted to the hospital. She told me while we were waiting to be admitted, that she wasn’t sure she was going to make it back home. I told her that wasn't possible given our family history of stubbornness! Once she was settled in, my doctor came in, said he had gone through all of the records that had been faxed over as well as the ones we had brought up, but couldn’t find the blood test results anywhere for the previous two years. My mom said no one had ever run any (I wish I’d had a camera for the look that came across his face).

Educate Yourself About What Tests Should Be Done

We found out after blood was drawn and a lengthy conversation, that my mom should have had MRIs, cat scans, and blood tests done every 6 months since she’d been diagnosed. She said the only thing her doctor did at her 6 month appointments, was asked how she was feeling, refilled her Tamoxifen prescription, checked her other breast for lumps, and sent her home.

He showed us the blood test results, along with the different markers that are used to show that the cancer had metastasized. My mom’s had moved to her liver and she had a massive tumor that was keeping her liver from functioning properly (hence the “poisoning” effect her body was having). He also said the tumor had more than likely been there for over a year and that, had we run blood tests, we would have found it then, been able to surgically remove the tumor, and she would have been back to where she was when first diagnosed with the breast cancer...having to make a decision regarding treatment options.

At this point, our only “option” was chemotherapy. We had conversations with another Oncologist who let us know what the best combination would be, based on the type of breast cancer mom had. There was only one problem, and it was a big one. Chemotherapy drugs must be eliminated from your body because they’re basically a form of poison in and of themselves. Your liver and kidneys are primary components in the elimination equation. But because of the size of the tumor and an already ill-functioning liver, they weren’t sure her body could handle the chemotherapy drugs without making things worse. They opted for a half-treatment. They were going to do the treatment, check the “numbers” in her blood tests and, if they were moving the right direction, give her the other half-treatment within the week. Given our family history of breast cancer and the success my grandma originally had with chemotherapy, they figured we had a good shot at succeeding. That was on a Monday.

They did the first half-treatment on Tuesday and her numbers started heading the right direction on Wednesday. By Thursday, they were headed the other way and the doctor who was doing the treatment told me to call my family because she probably had less than 2-3 days left to live. She died at 6am Friday morning, September 13, 1996. Only my mom could miss dying near ANY holidays or birthdays, and still die on a “Friday the 13th”! (Again, for those of you who have a hard time seeing any humor in illness or in death, you would have to have known my mom to understand. Even at her worst, she was still joking and razzing the doctors regularly).

Final Notes About Hospital Care

I was with my mom for nearly three weeks, from 6am until 2am almost daily, with few breaks in between to get my son to and from school. I realize that not everyone can do that when they have someone in the hospital. But if you can't be there, make sure you ask the staff or doctors what they're doing and what sort of tests they're running while you're not around. Also, make sure that you're aware of your own family history so you can give the doctors as much assistance and knowledge as possible.

My mom asked for a Do Not Resuscitate (DNR) order to be put into her file. I had to request it three times before it was actually put in. She also had a standing order from her doctor not to lift anything heavy, get blood pressure taken, or do any blood draws from her left arm since her mastectomy, in order to avoid getting Secondary Lymphedema (as always, prevention is always the best route to take). I had put a big sign above her bed at the hospital stating such.

Over a 3 day period, I stopped two nurses from taking her blood pressure on her left arm in spite of the sign. Then, after dropping my son at school, found that a nurse had drawn blood from her left arm while I was gone (she still had the bandaid on when I got back). At that point, I wrote in permanent marker on my mom's arm that there was to be NO blood drawn or blood pressure taken on that arm.

I followed up with a loud “discussion” with the head of the nursing staff regarding the fact that if it happened again while my mother was listed as curative, I would introduce to them to my mom’s boss of 38 years (mom was a legal secretary). At that point, I’d been as patient as I felt I could be for them to still not have gotten the point about doing their job. The majority of the hospital staff had been wonderful. There just seemed to be lines getting crossed somewhere between the orders on the Oncology floor and the blood lab orders.

A Note About The Surgeon Who "Cared" For My Mom

As mentioned on our home page, we blame the doctor in large part for my mom's death and we did attempt to legally go after him. The legal firms we spoke with were dumbfounded by the fact that all we wanted in the way of monetary reward was enough to pay the legal fees. They continually asked what additional monies we wanted to sue for. We weren't going after him to get money. We were going after him so that it would show in his records that he made a mistake. We wanted to make sure that when other women were looking for a breast surgeon, they would think twice about hiring that particular one. We didn't want someone else to have to hear that their loved one was dying because the doctor didn't run the proper tests.

All of the legal firms we spoke to agreed that we had a case, but none of them were willing to take it on. The consensus was that, because my mom had died, it would be difficult and time-consuming to show that, had her doctor done the tests he was supposed to have done, that the outcome would have been any different. We continued looking for a firm until the statute of limitations ran out. Now, we're doing this site which will give us an opportunity to remind people that doctors make mistakes, so take responsibility for your own health rather than leaving it 100% in the hands of a doctor.

So Little Time…So MANY Lessons

I didn’t include all of the details of losing my grandma and my mom to make you feel bad...about my mom, my family, me or about whatever personal situation you might currently be dealing with or have gone through. I included this many details about our family history regarding the breast cancer so that you can take the lessons from it that we learned too late.

• Learn about your family history - find out what health issues there were and what was done about them, if anything

• If you know about breast cancer being in your family history records, talk to your family members about it – they deserve to know

• Find an Oncologist that you’re comfortable with – they know more about cancer than your surgeon! If you don't like the Oncologist your surgeon recommends, keep looking until you find one you can work with

• If you're diagnosed with breast cancer, put together a “team” of doctors who are willing to work together for your best interests - or do it for a family member if they're not able

• Know what tests you should be having done and make sure you get them done on a timely basis. If you don't know what those are, research and ask questions until you find out

• Ask your friends and family to do research so you can compare notes and not miss something

• Trust your intuition and how you feel – you know your body better than ANYONE

• If you’re not getting answers to your questions, find another doctor!

• Join a support group so you know that you’re not alone in what and how you’re feeling

• If you’re feeling ill, find out what’s going on – don’t wait until it’s too big to fix

• Work through the fears you have so that you can educate and care for yourself

• Don’t avoid having tests done because you’re afraid of what you might find out

• Learn to control and eliminate the stress factors in your life – stress is a big factor of illness, including cancers

• Do NOT leave the care of your loved one who is ill to the staff at the hospital – paperwork doesn’t always get to the right places on time, not to mention that they’re only human too and have a lot of patients to look after

• Find a way to get humor into your life – it will get you through the toughest of situations