We need to know....

Jean · 10-07-2009, 07:00 AM

http://www.medicalnewstoday.com/articles/166265.php

Research needs to move faster so we can make better treatment choices.

Jean

I apoligize if I sound too strong today..

alicem · 10-07-2009, 07:36 AM

Go get 'em girl! We all have to show our fangs at times.

Patb · 10-07-2009, 08:33 AM

I agree totally.....
patb

Mary Anne in TX · 10-07-2009, 09:53 AM

Me too! Attack away! ma

AlaskaAngel · 10-07-2009, 10:36 AM

Hi Jean,

Emotionally your post hits home. Until we or someone we love actually is diagnosed we don't realize the depth of our lack of knowledge. We think that at the very least, most qualified medical people are knowledgeable, and then find out as we go along that often we are more up to date about the disease and treatments than they are.

But the same is true about the myriad of other diseases we can end up with and don't know much about. Qualified medical personnel have to be aware of the broad range of disease and treatments, unlike our focus on just this disease.

It is very hard to get educated well enough at time of diagnosis to make the "best" choices, and hard to stay on top of newer information afterward, and it is too easy to feel overwhelmed, or "stupid" even while trying to figure it all out in time to be "smart" with deciding what to do or not do. Breast cancer has too many variations for the simple answers we would like to have for our individual situation. I wish we knew more too.

A.A.

Diane H · 10-08-2009, 08:00 AM

Alaska Angel you put that very well, especially about uninformed physicians.
It is so exhausting trying to keep on top of it.

Jackie07 · 10-08-2009, 09:27 AM

Even when the doctors are well informed, they sometimes still forget to listen carefully to their patients to gather the crucial information. "All too human", I guess.

bejuce · 10-08-2009, 10:29 AM

You know, this thread is right on target with what I was feeling yesterday. I'm undergoing my radiation treatments (have 10 left) and every Wednesday I see my resident and on Thursday my radiation oncologist. I talk to them as much as possible about what I'm feeling physically and emotionally, and also ask questions about medical news that I read about (a lot of them on this board).

In my conversation with the resident yesterday, I asked him about the likelihood that I had/have undetected micrometastases in my body because of my LABC (stage IIIC) diagnosis or in other words, whether we should assume that to be the case. That prompted a conversation in which he basically told me how much is unknown about this disease, saying that there have been cases reported in the literature of women with LABC to have survived without ever progressing to stage IV and without having done any chemo and/or radiation, that there are cases in which cancer cells go to other parts of the body and never form another little colony, cells that go to other parts really fast and grow like crazy, and on, and on.

I left the appt with the feeling that there are still a *LOT* of unknowns about this disease. Sure, progress has been made in many areas, but there still needs to be enough funding for fundamental research on how the cells behave, what triggers their growth, and so on. I hope this research moves faster in the next few years so we can all benefit from it.

It's very frustrating to be a patient and have so much uncertainty on whether all the drugs, radiation, etc., we undergo is actually being effective or not... So I think the best that we can do is to inform ourselves as much as possible and grill our doctors without feeling bad about it.

DianneS · 10-08-2009, 10:48 AM

Breast Cancer breakthrough -

http://ca.yahoo.com/s/978704

don't want to hijack your thread Jean! I did post this on a thread just above your thread, here. They are making progress on determining what makes a tumour spread - but they need to work faster!! I am heartened by this news, tho.
Dianne

suzan w · 10-08-2009, 07:47 PM

this is all so true...we are so lucky here to have everyone questioning, researching, learning like mad...and then sharing everything we've got!!! I have learned more here than anywhere else...and have also learned to STAND UP FOR MYSELF and to TRUST MY GUT...something that alot of doctors find very threatening. It is MY life...c'mon!!! Thanks for this post, we all need to be strong and get LOUD!!! XO Suzan

Jean · 10-11-2009, 09:28 PM

Suzan,
Yes that is just my point. We must continue to be on line...often we on the board have fresh updated information (thanks Lanie and many others who post) that often the onc's have not read.

Also and most important a mental approach of not giving up and following your gut. We as women must demand better education in our schools for our younger generation. Even though breast cancer in men is rare it happens and most young men do not even know that it can happen to them.

At the very least young women should be educated on what we do know. While there is much yet to be discovered and learned - How about just informing what we do know. That women should be aware to ask that a Her2 test was performed during their biopsy. When I have talked to many women and asked them if they were tested and if they were Her2 positive they did not know anything about it. I can't tell you how many answered with "my dr. told me I have the good kind of breast cancer" ....excuse me! I did not know there was a good kind. That is just awful that any dr. would say that to a woman. It is part of their job to explain the difference of her2 Positive and Her2 negative at the very least. While there may be women who do not want to know those details....the dr. should at least attempt to do this.

My greatest concern is for the innocent young women in their 20's, 30's and 40's who have a false sense of safety due to their age. We are seeing younger women being dx. and not in the early stages because we do not have a breast health care program for them. I think that is a shame. How often I have heard about young women being sent away and told to come back into the office in 6 months and pushed aside ...at the very least why not have an ultra sound to determine if the lump is a cyst or solid tumor?

Too much is assumed....and you know what they say when you assume!

Each day the medical field is learning more and more.
I only say that with the information we now have it must be used to share and educate our younger women so as they age they are on the alert to the possible issues we as women face during the aging process, from young teenager to young woman, to young mother etc. For the women in their 50's and 60's etc. how about explaining how the odds do increase and why....talk about diet and exercise to assist them to stay breast cancer free.

While there are no hard and fast answers in this mystery of breast cancer I still believe we have enough knowledge to offer educated awareness of good breast health care. While there are many other diseases...46,000 women will die of this disease this year. Yet, with knowledge, all women can take actions to improve their chances of catching a tumor early, when it is tiny, and thus increase the odds of beating this disease. A couple of factors: Breast Cancer is the most common cancer of women in the U.S. It is the second cause of death in women after lung cancer.

Breast cancer rates across the country have increased steadily in recent years, with the risk of a woman contracting the disease at some point during her life now at 1-in-8, against 1-in-22 just 50 years ago.

More education is vital.

Jean

alicem · 10-12-2009, 06:07 PM

Jean -

Very well said. Two things come to mind . . .

Nine years ago, my primary care physician - a WOMAN - told me I would probably NEVER get breast cancer. This led me to a false sense of complacency.
Do you know if DCIS is routinely tested for Her2? The pathology report for my biopsy and for my lumpectomy did not test for Her2, because there was no invasive tumor yet, everything was still stage 0 at that point. It wasn't until a tumor was discovered from my mastectomy that it was tested for Her2. I have wondered if my doctors dropped the ball on this, or if DCIS is not ever tested.

I have just always been curious about this so I was wondering what the rest of you have encountered.

Alice

Jean · 10-12-2009, 10:08 PM

Hi Alice

HER2 status is not useful in guiding treatment for ductal carcinoma in situ (DCIS) because it is more common for DCIS to be HER2-positive than it is for invasive cancer to be HER2-positive (we don't yet know why this is).

But this is an area of active research. MD Anderson has a trial for patients to receive one dose of herceptin. Who knows what the future will bring? Maybe women will be treated at the stage of DCIS if tested and are her2...maybe it will stop any breast cancer in the very earliest stage. Interesting thought hey?

For the most Alice dr. are not testing DCIS at this time.
But I would guess if the patient requests the test
and there is enough tissue to sample you could have the DCIS tested for Her2 positive.

Regards,
Jean