Please Help Me Prepare a Breast Cancer Talk

chrisy · 10-22-2007, 08:42 PM

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.

Alice · 10-22-2007, 10:54 PM

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

Sheila · 10-23-2007, 06:14 AM

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!

Jean · 10-23-2007, 08:05 AM

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

AlaskaAngel · 10-23-2007, 11:44 AM

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

StephN · 10-23-2007, 12:32 PM

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.

Carolyns · 10-23-2007, 12:33 PM

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