Cancer Patients have power!!!

breast cancer surgery in 18. century

Image via Wikipedia

Patients are often quite scared when they find out they have cancer and they typically feel helpless against the disease.  This is a normal reaction and it would be fairly unusual if one did not experience these feelings.  Another common feeling and/or perception is that one must listen to the doctor at all times and that the oncologist is following the most up to date and the most effective cancer management strategy there is.  This type of feeling and complete trust in the clinical doctor who specializes in cancer patients is completely understandable.  For many cancer patients, the combination of fear and trust in our clinical providers means that they may not have the confidence to ask questions, challenge the doctor about the treatment he or she selects, and often not get a second opinion.  Let me share with you a little story about several women who dared to challenge the medical establishment and helped to change the way cancer of the breasts were treated….changed it forever.  These women dared to ask, dared to complain, and dared to stand up for themselves.  For you see, humans- including doctors are creatures of habit, are creatures of circumstances, and in some cases are creature of dominance (they he or she possess all the knowledge that they need to make a decision and don’t need your input).

Breast cancer has a very interesting history and let me share it with you.  Breast cancer was first documented thousands of years ago in drawing and some hieroglyphics found in scrolls that date back to the ancient Egyptians.  As early as 1500 BC it seems as if  the Egyptians at that time were able to remove surface tumors by surgery or deeper tumors by use of hot irons with a procedure known as cauterization (burning the tumor off).  It is not really known how successful they were, however it can be assumed that many patients died of infections as nothing was known of microbes and infections from dirty instruments.

During the next 1400 years or so, the dominant thought about cancer and other disease is that they were caused by natural disruption of the four humors.  The four humors consisted of blood, yellow bile, black bile, and phlegm.  Different disease were attributed to the disruption of flow of one of these four and for cancer it was thought that black bile abnormalities resulted in these diseases.  Meanwhile during the Egyptian times as well as during the time of Hippocrates also attributed diseases as being the result of punishments by the Gods, but Hippocrates gave diseases some physical attributes by assigning them to humors within the body.  Galen who had later entrenched the idea of accumulation of black bile being the primary cause of cancer, further suggested that cancer can and should not be treated…as black bile was everywhere and that removing part of it simply allowed more of it to move in.  This idea stayed with the medical practice for years….try and use drugs if you can, but avoid removing the tumor as black bile was in abundance.

Anyhow, to make a long story short….when anatomy became a more serious practice in 1533 with Andreas Vesalius and then later with Mathew Baille in 1793, it was quite apparent that this black bile was nowhere to be found.  This now opened the way for doctors to consider using surgery to remove tumors as a means to heal their patients.  However, as neither anesthesia nor antibiotics were available for some time later, surgery was not a pretty affair and most patients needn’t worry about dying from their cancer, they most likely would not survive the surgery due to infections.  However, in the mid 1800’s both the discovery of anesthesia and the germ theory (infectious germs could cause illness) did the practice of surgery get a boost.  Patients could now suffer a lot less and many would not die of the result of the procedure itself.  The almost 2000 year old idea of the four humors causing all major diseases finally began to have less and less followers until it was a dead idea altogether.

Now back to breast cancer.  Surgery works well for very surface tumors or tumors that are small and caught early.  But, even in the 1800’s it was known that some patients had cancer that was more advanced and that could not be simply removed by simple surgeries.  Breast cancer was one of those, many patients who were diagnosed with this cancer did well for only short periods of time after surgical removal of the tumor in the breast.  Many relapsed with the same cancer and this time it killed them.  A surgeon named Halstead became well known for his then revolutionary concept, that is as simple removal of the breast did not prevent breast cancer patients from getting the cancer again due to spread of the disease, he would remove the breast, some muscle, lymph nodes, part of the collar bone, and so one and so forth.  In fact, his idea was so popular that his students and many other surgeons had decided that they had been to kind to breast cancer patients in the past and they all went deeper and deeper into the chest cavity to remove as much as they could.  This form of cancer surgery was known as ‘radical mastectomy’.  In reality, as it was a demanding surgical procedure and it was also perceived by Hallstead as being more beneficial then cancer recurrence, it became the pride of the surgical community.  Finally, surgery and serious surgery indeed elevated the status of the surgeon of being the lifesaver, despite the fact that it was an extremely disfiguring procedure of the female patient.  Thus in 1907, he presented data to the medical community that looked great….but that in reality showed that many patients were still dying of recurring breast cancer after four years despite the radical surgery.  In fact, all that the surgeries were most likely doing is allowing patients with early stage breast cancer to live cancer free, but the ones with more advanced breast cancer would never be cured with this procedure as the cancer cells went into the blood and throughout the body.  However, this flawed procedure gave patients hope (however false), became entrenched in surgical theaters, and helped put surgeon in the forefront of medicine.  For reasons that are hard to know, Halstead’s radical surgery strategies were hugely popular amongst surgeons during the 50’s and 60’s.

There were some daring surgeons who used academic reasoning and looking into the data that realized radical surgery may not indeed be providing any real long-term benefit to patients compared to those getting simple mastectomies (much less complicated surgical procedures).  No formal proof actually existed that these radical surgeries were indeed better than other treatment.  In fact, the 50-60’s saw a huge explosion in chemical and radiation research that lead to the development of potential medical drugs/therapies that were now being tested in the clinic.  But, doing the right kind of clinical trial to actually test radical surgery to simple mastectomy in patients was almost impossible to do, because it needed participation of the very people who were very unlikely to want to participate…the surgeons themselves.

It took some surgeons who appealed to the patients themselves to start to make changes to the way that breast cancer was treated.  A few started urging women to say no to radical masectomies.  In fact, this was happening just as Jane Roe took the state of Texas to the supreme court to challenge the state for blocking her choice to have an abortion.  The woman’s movement was just starting to heat up in the US in early 1960-1. However, two female patients Betty Rollin and Rose Kushner started to write editorials in the newspaper and show up at medical conferences demanding to allow women to make their own choice concerning these extremely disfiguring surgeries for breast cancer.  The actually got women and men to start questioning the reliance on this extreme form of therapy and to started demanding to see the data that showed it was effective.

It took over ten years now that women were starting to realize that perhaps what the surgeons wanted and what they needed to beat breast cancer were not always congruent.  It took ten years for enough surgeons, patients, and hospitals to put together a proper controlled clinical trial to actually compare the benefits of radical surgery to simple surgery and to surgery with simple radiation therapy.  It turned out that despite the amount of work that the surgeon did to remove the breast tissue and all that he could around the breast tissue, that there was NO difference in the recurrence rate relapse or even death between any of the procedures.  Radical mastectomy was around for nearly 100 years and almost half a million women received that aggressive form of surgery when they easily could have received a much less disfiguring one.  Today, almost no racial surgeries are done for breast cancer.

Patients actually have a lot of power.  What many of us don’t have is knowledge.  However, it does not mean that the knowledge is not there.  We need to want to know!  We need to have confidence in ourselves.  It’s ok to be scared and have fear, but we can’t simply let them get in our way.  Challenge things you think don’t sound right, ask questions about things you don’t understand.  It’s your life!

Thanks…for more information on cancer please see Cancer Made Simple!

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