Every One's Cancer Is Different

I now know many women, dozens, probably more like hundreds, who have been diagnosed with breast cancer. Sadly not all are still with us.

The one thing I have learned is that everyone's cancer is different and presents differently. A case in point is a friend went to see another friend who was newly diagnosed with stage IV breast cancer. Two months after her diagnosis she cannot walk with out a cane because of the mets in her hips and her arm is huge with lymphedema. Two months! Her first symptom was hip pain.

I have a friend who was diagnosed with breast cancer at stage IV about four years ago and she was gone within 8 weeks of her diagnosis. Her first symptom with rib cage pain.

I have another friend who was diagnosed with Stage IV breast cancer 16 years ago. She is doing fine and hanging in there.

That is a huge difference. We can say that treatment has progressed rapidly in the past 15 years but the woman who was diagnosed so late is the most recent case.

While I digest the shock of the most recent diagnosis, this underlines what I always need to remember: everyone's cancer is different, everyone's cancer story is different. We all need to remember that.

This makes me think of the position that an oncologist faces with each new case. How is this cancer story going to unfold? What are the best options for this patient?

My question then is how do they figure out how to best treat each case? I know they have statistics and recommendations on different protocols but each story can be so different and the options are vast. We may complain about our doctor's some times but if we think about what they are trying to decipher and unravel, we should be amazed.

So as we listen to other's cancer stories, we need to remember that each cancer is different, the options are vast, and the outcomes will vary wildly.

Quality of Life

I don't know why this took a research study to figure it out. One of the key factors in determining health outcome is health related quality of life for cancer people.  A recent research paper was published which analyzed quality of life factors in multiple cancer trials.

"Of the 30 trials included in this analysis, 3 trials assessed a total of 321 breast cancer patients of any type or stage. After accounting for multiple variables, physical functioning, emotional functioning, nausea and vomiting, and global health status were all predictive for survival among breast cancer patients.

Physical functioning, as assessed by the questionnaire, includes the ability to perform various degrees of effort, such as walking or carrying heavy loads, as well as basic functions such as eating, dressing and washing." 

At my second cancer diagnosis, physical functioning was not an issue. Now, its a different story, walking any distance or carrying things is much more difficult.

"Emotional functioning includes attributes of depression and mental well-being, such as difficulty sleeping and often feeling worried, tensed or irritable."

After one cancer diagnosis, I knew better and made sure I took care of this part. 

"Often feeling nauseous and vomiting were also found to be predictive of worse cancer outcome."

Nausea was my 'frenemy' during chemo. I spent more time feeling nauseous (but that didn't mean I lost any weight). And I'm still here so the jury is still out.

"Global health status includes attributes of both functional and emotional well-being, as well as the effect of disease or treatments on family life, social activities and financial situation."

Family and social stuff took a back seat during treatment because they were less important to me. I did what I could but my focus was on getting through treatment. It was a bummer that I got laid off two weeks before my diagnosis so there was a financial issue but I did get a part time job during treatment that helped.

Back to the emotional part. At my second cancer diagnosis, I knew what it was emotionally like to go through a cancer diagnosis, not cope with it, ignore it, and waste a lot of time on it. I also knew because of how I didn't deal with it, that it took a long time for me to learn to accept it. 

But at my second cancer diagnosis, this was one area where it I was in control and I could make a difference. So I did. 

One of the most important things in my life to this day is my quality of life. This has lots of components but (in the words of Donald Trump) it is HUGE! Why? Because it is in my control. 

The components include everything from where I live, what I do, who and what I include (and exclude) in my life, how I handle my treatments, what doctors I see, what I do to make me feel better. I make a point of getting rid of any one or anything that is toxic in my life. Stressful situations are avoided if possible. Making sure I do anything and everything I can to make me feel better emotionally, which is tied very closely to how I feel physically.

So, my advice is that if you feel like crap or are facing any kind of crappy diagnosis, focus on your quality of life.

Do you want the truth?

Do you want the truth from your doctor? Of course we want to hear the truth. BUT. Are we really sure about that? I mean we want our friend to honestly tell us not to buy that dress because it makes you look fat. Or we want the home improvement contractor to give the honest date they will be done with the renovations.

But sometimes a little blurring of the facts can be a welcome respite from reality. The truth may need to come out at appropriate times. If there is an 95% survival rate for a medical ailment, do you really want to know that ahead of time? Or do you want to be told that most people come through it fine? If you are told that number of 95% are you going to fixate on the 5% that don't make it? If you are diagnosed with cancer and the doctor starts running on and on about 5 year survival rates and tells you its only 87%, do you really want to hear that number? Or do you want the doctor to say things like 'we are optimistic about your treatment and most people do quite well with it' Eventually you will find out the survival rates and can absorb them.

I know one woman with her cancer diagnosis, she told her doctor she didn't want to know any numbers - not her cancer stage, or number of positive lymph nodes, or anything. She just wanted to focus on treatment. Eventually she did find out all her stats but it was on her time.

A big hot button in the news this morning is that doctors are not completely honest with their patients. There are two parts to this issue - one in telling patients about prognosis and expected outcomes and the other with revealing their alliances and payments with drug and medical device manufacturers.

For the first issue, I think I want some information but only want hard details and numbers at a slower rate. At the end of my breast cancer treatment, I finally screwed up every brave nerve I had and asked my oncologist what he thought of my prognosis. I would not have been ready to hear it earlier, not that it was bad but I wanted needed to go through treatment with as much optimism as I could attain. Although doctors may not be as forth coming about outcomes and expectations up front, they also need to retain some compassion and explain as much as the patient wants. If you over whelm a patient with a poor outcome, you can send them spiraling into depression and despair. There needs to be a balance.

But if there has been an error in my care, I want to know about it. When I had my gall bladder out, in post op there was a giant bruise spreading across my stomach. From the nurse's comments I knew that was unusual and it was the largest pain area during recovery. It appears the surgeon was a bit heavy handed at some point - even though they were four tiny incisions, the tools used my have been pretty forceful to leave a bruise. But did he ever mention it to me when checking on me? No. Did I bring it up? No because I was in the post anesthesia haze for a while and my brain didn't function properly. As a result, I am fine but will probably avoid having the same surgeon again.

For the second issue of revealing affiliations and payments with medical manufacturers I think my stance is pretty clear: treat me based on what I need not on the weight of  the doctor's wallet.

Most of the time honesty is the best policy but sometimes a little fudging can be appreciated.