Why Don't Doctors Take 'us' Seriously?

[jwhitfie]

I am greatly disturbed and frustrated with the majority of medical professionals.  Why is it that Doctors do not take a young woman serious when she begins to suspect that something is wrong with her breasts?  I got lucky, and was smart enough to leave my Doctor who ignored my complaints of "I think I feel a lump ... I'm having pain, something is wrong ... can we check it out?"  After several months of searching I finally found someone who took me seriously and sent me in for an ultrasound and a mammogram ... I was diagnosed on my 25th birthday, nearly 5 months later.  Due to the size of the lumps (yes, there were 3 in total) I had no option other than a mastectomy so I opted for bilateral.  The lumps weren't there at my last gyn visit, and the largest one was about 4 cm, negative nodes, and by some mystery still DCIS w/negligible areas of microinvasion.

My friend I graduated from college with, class of 2000, same age, same situation ...

Another friend ... her Drs put her off for a year and a half... she is 30, and by the time she was diagnosed she had 4 positive nodes

A funeral I just went to of a friend who's 32 and her situation is the same...  I have a couple of friends in stage IV, and this is all in my immediate area.

I am frustrated ... we do not live as long (younger women) because we are typically diagnosed with later stage disease (Oh, I wonder why?)  Only a small minority of healthcare professionals realize the growing problem.  In my support group in Cincy there are about 80 of us under 40 survivors ... When will things change?

[HollyM]

I agree and have two view points.

First, I have personal experience of being told that I "couldn't possible feel a lump that big".  MRI later confirmed (2 years later) a 6cm x 7 cm mass.  Being interrupted constantly while I asked for a biopsy or an MRI and being told "don't worry it is only a lipoma".  Both the surgeon and radiologist told me this, and the MRI now shows that a lipoma is ruled out.  Being told that most of these are "cysts and go away", when I was repeatedly telling them that I could tell it was getting bigger and NEVER went away.  View point #1: Doctors are taught statistic and when the exception -- which is not well defined comes -- through the door they are ill prepared to address the situation.

Second, doctors are just a color on our palette.  After letting my "mass" grow for a year and being reassure the again it was only a lipoma I got more aggressive and asked that they prove it safe and how could they rule out a liposarcoma??? (I'm done my research, it may be rare but liposarcomas are more common in women that have confirmed lipomas).  I am scheduled to have the mass removed as it is now making my breast look uneven and full of pressure.  I further pressed to have the MRI that was originally gated away from me.  Which (the MRI) proves it is not a lipoma (sorry doctors your reassurances weren't based in science -- look before you tell a patient two years running that all is ok).  Do I think it is cancer?  I can't answer that any better than my doctors can at this point but I do know... View point #2:  I live with my body every single day and my doctor may get to see it just a few times a year.  I trust myself and my own good record keeping before I trust the quick off hand remarks of doctors that are under pressures from administrators and insurance companies to keep patient time down and follow up exams to a low threshold.  I trust myself.

Why do WE take doctors so seriously!!!!  They are just a tool to help us get the information we need.  Take yourselves more seriously and if you trust that there is something important that needs medical attention keep on until someone does listen.  Woman we are not victims, we are intelligent consumers in a marketplace that is pulling pressure on our service providers.  We need to voice our needs in the marketplace use the old saying "buyer beware".

[palmgirl]

I read that 70-80% of all "lumps" are found by patients on self exam.
The patient history and phyiscal exam has always been the foundation of making a diagnosis by the medical practioner.  
Yet there is a complete lack of accountability by the medical profession to provide accurate "hands on" medical examinations of the breast.
Mammograms are the default technology to screen for breast cancer. Yet, routine mammograms are not detecting lesions accurately or soon enough.
Like so many women, I located my own breast tumor after a mammogram and physician exam completely missed it.  
I too am frustrated that early diagnosis is the best approach and
accurate tools are still not available.
Think about it, the medical community's response to women has been to educate "us" that we need to perform our own "hands on" medical exams to find our own breast cancer.
Can you imagine the medical community informing men to perform a self exam for prostrate cancer?  That's right the PSA blood test has been developed for some time.
Don't forget that breast cancer self exam for early diagnosis has to be taken seriously by you.
    

[wickedwaters]

I don't think the medical profession takes women seriously period!  I am sure younger women have it even harder!  They also have a tendency to closely guard their information, as if we are children and cannot handle the truth.  And they wonder why we go to the internet.  Then they redicule and tell us that internet information is not always reliable.  Be aggressive in your health care, and listen to your instinct.

[mabelwabel]

GRs is correct!  www.youngsurvival.org is a such a wonderful group.  Here in Houston, when I went to my first meeting the members were addressing envelopes to the area OBGYN's and including several of the Young Survival brochures in order to increase awareness.  I was also blown off  by my doctor, and I have Inflammatory Breast Cancer.   Thank God, I saw another doctor within 5 days, that doc, warned me about cancer and put me on antibiotics because my breast was red.   When it wasn't better in 7 days, he ordered a biopsy.   I went straight to M.D. Anderson and was diagnosed there.   Even though I acted quickly, I still wasted about 14 days.  With Inflammatory, that is a big deal.

May I suggest you start monthly meetings there in Cinc.  We meet one sunday a month.  Please email me with any questions.  ***@****

Last but not least,  my thoughts and prayers are with you.   I am 32 but you are too, too young to be dealing with this.   You've got a fighting attitude and that will get you through.

[GRsmom]

Dear Jwhitfie,
I can certainly empathize with your frustration, though possibly for different reasons.  It's my experience that there is much less known with follow-up hormal treatment for younger, premenopausal women.  In my quest for info I came upon the  website www.youngsurvival.org.  Seems like a great way to advocate for younger women with breast cancer.  Just thought I'd pass that along, maybe you already know about it.  Good luck.

[CCF-RN,MSN-rf]

Dear jwhitfie:  While cancer in women under 40 is not common, it certainly occurs.  You are correct about younger women being diagnosed later, in part because of the situation you describe.  Most lumps found by young women are, in fact, benign.  While medical professionals should be prudent and investigate all lumps, I believe that women should also demand that a lump be further investigated until a satisfactory explanation is given.  Physicians affiliated with large teaching hospitals may be more prone to investigate lumps in young women, since larger places treat higher numbers of younger women.  Additionally, a breast specialist might be a good resource for young women with concerns rather than a local gyn.