How Long Are You On the 'Hook' For A Recurrence?

After cancer, we always wonder 'will it come back?' Actually, we don't just wonder, we obsess over this. For a long time, we think every little owie is probably cancer. We can only get our life back on the rails when we learn to cope with this. But still then every so often we still freak ourselves out about something. And life goes on.

But post cancer, every so often our doctors tell us something we don't like and we go back on that cancer roller coaster. Time goes on. Years start to roll by.... We assume we are good because its been a decade or two....

Now I must ask the question 'how long are you on the 'hook' for a cancer recurrence'?

I know that research and the past has shown that thyroid cancer has been known to recur 30 or 40 years later.... How fun. Breast cancer I always kind of thought 15 years or so you are good.

The news told us this week that Olivia Newton John has had a breast cancer recurrence. She thought she had back pain but instead it was cancer metastases. I made a point to look up how long ago was her original diagnosis. That was in 1992. You can do the math. 25 years ago.

Damn.... So my ten years out doesn't mean that much. Damn, damn, damn.....

Post Cancer Survivorship

So Becky over at BC Becky blogged about developing her post cancer survivorship plan. (Personally, I hate the S word but will suffer through it for this blog post, using it as Becky's word not mine.) Other people call it their new 'normal'. I have found it very elusive. And basically think its a crock of sh*t. However this morning I started thinking (which is dangerous) while reading Becky's post.

I have no way of reaching a new normal because I was living my new normal, post cancer since 1981. I have no way of knowing what it would be like to be an adult without cancer since I was 19 and in college at my first diagnosis.

I always forget this. I am not sure how I am capable of forgetting this. I think I keep going on the bandwagon of let's find our new normal. But I was already living the post cancer 'new normal'. This begs the question is it possible to reach a 'new normal' for a second time?

Along with hating the S word I also have a problem with the blankety-blank 'new normal' concept. But in this case, I may have found the reason why I hate this so much because I have been living it all along.

So this begs the question, what would I be like without cancer? I have no idea because I never really had the change. So you are stuck with me and my post cancer self.

Unmet Needs of Cancer People

Finally someone figured out that there might be unmet needs of people after a cancer diagnosis.  A study was recently done:

"Cancer [people*] face unmet needs. These are needs which lack enough service or support for survivors to achieve optimal well-being. Understanding the needs of cancer survivors can help guide services and support to meet the needs of [people*]."

To complete this study, they asked over 9000 people one question: "Please tell us about any needs you have now as a cancer [person*] that ARE NOT being met to your satisfaction". Only one question. But they could answer how they wanted and then they sorted out all the results.

Here are the answers:

Physical needs: 38.2% needs affecting the body, including pain, symptoms, sexual dysfunction, diet, exercise, and rest. 

Financial problems: 20.3% 

Education and information needs: 19.5% needs which were related to unanswered questions and the lack of information about cancer. 

Personal control problems: 16.4%  related to one's ability to maintain autonomy over one's body. Health care system needs: 15.5% 

Access to supplies, medications, and transportation services: 13.8% 

Emotional and mental health problems: 13.7% had emotional and mental health problems

Social support needs: 12.7% 

Problems with social norms, discrimination, misinformation, and policy: 10%

Communication needs: 8.5% 

Problems with their relationship with healthcare workers: 8.25% 

Some groups had more than one problem, in fact women with breast cancer had an average of 2.88 unmet needs.

I was glad to see some kind of research into this. I feel that the medical profession takes care of you during diagnosis and treatment and then that's it. You get a 'come back and see me in 6 months'. And the patient is left grasping at straws. So of course there are more needs for the patients. But the bottom line didn't do much for me at all:

"The authors concluded that the needs of cancer [people*] are important and should be researched further."
I'll just hope for more research.
*I can't use the S-word, I find it offensive.

The Post Cancer Diagnosis Life

As I have said before, if you haven't walked the walk, you can't talk the talk. This is a pet peeve of mine.

Once you are diagnosed with cancer and thus had your life turned upside down and inside out at the same time, it takes time to return to a balance, that so called 'new normal' you hear about (but never really attain or understand). You may be the same but you aren't. You have new insights into life after going through those experiences. You have 'walked the walk' and are now a member of a new group - cancer people.

Cancer people are the ones who have been the perils of diagnosis, chemotherapy, radiation, hope and despair. Its a group of people who never thought they would be in it but are doing okay now that they are there. They are happy they are still alive to participate. They have more emotional ups and downs than anyone else. No one else can understand what life is like for them.

There is another group of well meaning people out there who try to help cancer people but since they haven't 'walked the walk', they can't 'talk the talk' no matter how much they try. These include care givers, providers, and more. Unless an oncologist or oncological nurse has had cancer, they never quite get it. Unless a therapist has had cancer, they never quite get it. Never mind insurance companies who never get anything and just like the word 'no'. (But that's a different blog post.) Or drug development people who really do n't get it.

We cancer people accept their help but realize there may be holes in what they can provide. They do their best but it will never quite be all encompassing. However it is rare that a cancer person's life was not derailed enough so they want and are still able to provide support and care that would fill all the gaps.

As a cancer person, do you really want to open up to your career path and reveal your medical history and face the societal backlash (where people think you are too 'sick' to be a full employee) in order to fully fill the role of a cancer support person? (Again another blog post.)

When cancer people meet, the conversation tone subtly changes. Because we have 'walked the walk' and are now together.

Not so much for me

So Apple and UCLA's Jonsson Comprehensive Cancer Center, Penn Medicine, Dana-Farber Cancer Institute and Sage Bionetworks have developed an app to help improve the quality of life for women after breast cancer. I'm not going to run out and buy an iPhone anytime soon so its not going to help me.

I welcome the idea of collecting data on mobile technology so those of us with chemo brain don't have to remember something until we get home to log it into the computer. But I am not happy that it is only available on one platform, which will instantly create bias in the data collected.

I honestly believe that the medical facilities involved are concerned about the quality of life for breast cancer patients. I do not believe Apple is as concerned, they only want to sell more phones. And if you believe the statistics, iPhone users are more likely to be highly educated and rich. so what about all of us Android and Windows users? We aren't cool enough to be involved?

So the bias comes from the fact that the educated and better off breast cancer patients will have more access to other modalities to care for themselves after treatment. They are more likely to be able to afford acupuncture, therapists, and more.

This advance to use mobile technology will not be equal and unbiased if it is available on Android and Windows platforms.

The post cancer life

Life after a cancer diagnosis is never the same as before. They (this is the proverbial them) tell you that you will reach a new normal - whatever that is.

Some people turn their diagnosis into a turning point in their life where they start eating organic food, take better care of themselves, and appreciate the little things in life.

I can say that while I used to exercise regularly. Now I even belong to a gym - it maybe one for dilapidated people - but I even go to it three times a week. And attempt to go for a walk one time a week. I am pretty sure I reach the minimum suggested exercise requirements. I am also attempting personal deflabbification but that seems to have worked not quite as well - I'm going to have to have a conversation with the bathroom scale sooner or later.

I did find an article recently that a study was done (because we need another study) that only 10% of women post breast cancer treatment are getting enough exercise. This is compared to 39% prior to cancer diagnosis and treatment. Doesn't this sound kind of backwards?



There are many average people you hear about that after cancer they turned their life around and got in shape for the first time. But evidently its not as many as we might think. Do the women take their cancer diagnosis as a reason to give up? It should be just the opposite.

I'm not perfect by any stretch but I do exercise.