Please Help Me Prepare a Breast Cancer Talk
 

Friends,

I have been invited to give the keynote address next month to an offsite meeting of breast cancer researchers, doctors, nurses and politicians. The director of the research facility kicks off this annual event with a survivor talk in order to remind the audience why they do what they do. This year it's my turn.

I view this as a unique opportunity to speak to a group of healthcare professionals from the patient's perspective. However, while I will briefly share my own b/c story, I would like to deliver a representative message from all of us to all of them. Thus, I would greatly appreciate any input you care to provide. If you had the chance to address this kind of an audience, what would you want to say? Also, care to suggest a title for the talk?

Thanks to anyone who cares to offer some ideas.

Stay well,

Cynthia

definitely put in a plug for regular pulling of Serum Her-2
 

and other tumor markers, like the CA 27.29, the Ca 15, the CA 125, and the CEA, at a minimum.

My two cents...smile...Enjoy the conference--this is a great way to let what patients want be heard.

Break a leg,
Gina

Hi Cynthia

I look forward to seeing you again in San Antonio. If I were giving a talk, I would include something about the "Responsibility of Survivorship". Certainly you and Christine as well as others on this board and others who you know in your personal and professional life fit that mold. Taking a diagnosis and then later, turning a bad thing into good for others. Stepping up to the plate in helping others through it, self and patient advocacy. Even advocating more funding from government.

I feel very strongly about this aspect of the journey for me. Perhaps this could be useful in your lecture.

This is not scientific or anything, but what I'd say to that room full of politicians, researchers, and health care professionals is THANK YOU for giving us hope in the face of what used to be an immediate death sentence, and WE ARE COUNTING ON YOU TO FINISH THE JOB. QUICKLY, PLEASE. We are talking about saving people's lives.

As there being politicians there, they may not know the stigma that breast cancer has in society. The seriousness that this is a true cancer and that it kills. I have met many people that think if you have a mastectomy that you are cured and they are not aware that it can and does metastasize. After all it is just a breast! I think that they need to be aware of this as well as with other types of cancer ie: testicular cancer. There are other types of cancer that have a much poorer prognosis but if you are the one that dies from it, the prognosis is the same, and the impact to your family is the same!
Alice

Cynthia
I think I would inject attitude.....because survival is all about attitude, in most things in life, but especially with cancer....make each day and moment in your life count....we are as humans all terminal...we are lucky enooiugh to be given a warning sign!

Education -
 

Education:
I believe education on many levels. Our dr. need to know that todays
women want to understand their bc. Treat All Of Me" My body and
brain.

Education for the newly dx patient. I have found that many woman
until they are dx. know very little about breast cancer until it hits home.
Even with the TV ads etc. many woman are still not having regular
mamograms. It is shocking but true. When most woman leave the
dx. office after their first dx. they are in shock. Professionals need
to understand that the patient will have and should have many questions.
I have found you have to pull out information from doctors. They do not
explain details very well. Maybe they mean well and do not wish to scare the patient - but there should be a introudction level for the newly dx.
woman. Explaining the different types of cancer - in order for them
to uderstand their own bc.

Education for the co-workers, loved ones, friends. After surgery
and healing - many feel it is behind the patient...not so, the mental
strain for the patient of worrying - "FEAR" with each new pain or ache
(which is more than likely nothing) but to the bc survivor there is the constant question, "is this a recurrance?" Doctors need to understand this fear and not push it off as not important. Even in the home - with loved ones, they become tired of hearing about cancer. They just want to move forward (and so does the patient) but that "FEAR" lingers. It needs
to be understood and certainly pay it some attention to ease it.
Most people just don't "GET IT" but the survivor understands the fear.

Fran

In reading the posts on different breast cancer forums, even with all the info out there about breast cancer, it still "sounds" to me as though for many diagnosed with bc there is still one "piece" missing.... I think some of the larger cancer centers are better about addressing it, but on the whole I think more needs to be done. The "piece" I am talking about is that each patient, just after diagnosis and maybe even before talking with an oncologist, should be offered the opportunity for an up-to-date basic class specifically on breast cancer. Not a 1-hour crash course with a busy doctor, but something spread out over a couple of different sessions, so that a person has time to learn the vocabulary and remember it, and have the time to think up their own questions. I know there are some online tools like the Mayo Clinic introduction, but as someone who works in the medical field I know unfortunately that most of the medical personnel who deal (at least initially) with breast cancer patients are either not aware of those tools or are not actively advising the patient where to look to use them.

I remember telling my onc when I got to Seattle to see him that I'd read online from Alaska about a video the center offered that I felt would be helpful, and that I wondered if I could see it. Instead of letting me know that there was a large cancer resource center I could visit to find the video, he just said "yes" but buzzed on without telling me where to go to find it. As it turned out, the resource center was located close to the main lobby of the cancer center with no clear signs posted to direct anyone how to find it.

Ideally the class would include the opportunity to visit any cancer resource center, or at least some basic handouts listing some key resources.

AlaskaAngel

Bedside manner
 

Some good ideas here to cull out.

For me, I would like to get in a word about "bedside manner."

There have been SO MANY women who have posted here on how unsatisfactorily they have been treated either by someone on their care team or in the infusion suites. This is not the usual case, but gentle reminders might lessen these devestating encounters.

Our emotions are peaked and we "tip over" easily when fatigued and under a long treatment siege. A careless act or word can have such a huge impact on a patient.

The other half of that is that when we bring some ideas that are not in the mix for our treatment or questions, that the care team take time to listen and respond. We are not little kids in kindergarten who are unable to understand anything about this disease.

Thanks, and I know you will do a SUPER job with your keynote speech.

Cynthia, Thanks for doing this.

I am a single mom, head of household, working full time with stage IV mets.

Group health insurance portability would be my plea. It would seem to me that if you have been covered by a group policy all of your healthy life that you should be able to maintain that coverage once you get sick. Cobra policies are better than nothing but I believe that more can be done for people that get sick before age 65 when Medicare kicks in.

If you lose your job it is hard to find another one once word gets out that you are Stage IV. I need my insurance now more than ever.

Carolyn

Wow, thanks to all of you have taken the time to write. I greatly appreciate your input and will be sure to work the bulk of your suggestions into my talk (and try like mad not to exceed my 25 minute timeframe).

I will let you know what I end up saying after the fact, and will pass on to you whatever feedback I receive.

Please keep your suggestions coming if you care to add them. I truly value your input.

Best,

Cynthia

I guess I would, from my perspective, regardless how you you complete recommended mammo's, you still need to do do self exams. Perhaps, breast MRI's should be required at age 40 for dense women. Mammo just doesn't pick up many. Bev

My two pet peeves, for your consideration:

1. Whether we like it or not, treating bc is a business (a big one in terms of $$) and patients should be treated like human beings, not processed like sausage. Doctors need to look beyond statistics to the patient, and by that I mean the WHOLE patient, not just the bc - after all, it isn't the cancer that walked in the room and asked for tx, it is the person who has cancer. Keep the focus on patients as individuals with feelings.

2. QOL is too often sacrificed, and needlessly, in bc tx. Keep in mind that survivors want to do more than just survive - we want to LIVE, and that means being able to maintain good QOL at all phases of tx to the fullest extent possible. Information, clear, concise and COMPLETE about all likely side effects of all tx should be communicated so the patient is not shocked when they happen, and also the means to cope with them.

Thanks for doing this, and best of luck to you with your speech. Will anyone be recording it?

Hopeful

I agree the oncs need to look at our quality of life. I want quality over quanity. If I can't do the things I love, what's the point. The also need to make MRI's of the brain standard care after treatment of early bc when positive for her2. Herceptin and chemo don't pass the blood barriers of the neck leaving our brains unprotected.

This is what I would tell them:
 

The most compassionate and validating thing I have heard since my DX of breast cancer last year is something I was told by my oncologist at my first three-month checkup. Like so many of us, I had a diagnosis, a double mastectomy, and chemo all before my brain and heart even had time to catch up with reality. Then all of a sudden you are on your own without your oncologist and chemo nurses and lab work for three months.

At my first 3-month checkup I said to my oncologist, "It seems like every time I see a bruise, even though my head knows I bumped my arm the day before, when I see it the first thing I think of is cancer. If I stub my toe and the next day my toe hurts, even though I clearly remember stubbing my toe, before logic sets in, the first thing I think of is cancer. Am I being a hypocondriac ... or do I need therapy ... or what?"

She smiled, gently put her hand on my arm, and quietly said, "Ohhhh, not at all ... you're being normal. Imagine I am holding the most beautiful gift-wrapped package you have ever seen ... with the most elegant ribbons. And when I hand you the package ... it explodes in your hands. The next time someone hands you a package, don't you think it would be the most natural thing to flinch until you knew it was safe? Your life was that package and three months ago it blew up in your face. It is the most normal and human thing for you to flinch."

To me that was the definiton of a compassionate, understanding, and non-judgmental response. I will never forget that tender image.

And, of course, it is another reason why I am convinced that Dr. Barbara Bowers of Mpls, MN is THE finest oncologist in the world. She is just as concerned with my heart and soul as she is with my cancer.

AbbyDawg