I was one of those who believed that 70% to 80% of biopsies were negative so I decided not to undergo the biopsy feeling that surely such brutal treatment would cause cancer later if I didn't have it now, so why risk it for 20 percent.  I explained this to my surgeon in a letter.   He was nice and said if I changed my mind later he would still accept me as a patient (even though I surely drove him crazy with anxiety questions).

A year and a half later, I felt soreness under my arm and sometimes running down the side of my arm so I decided to check it again.   Again they recommended a biopsy.  I was still terrified of a biopsy so I phoned the main cancer treatment centre and they gave me a number of a psychologist in another hospital that could help with the fears.    When I phoned THAT number they said they couldn't help because I didn't HAVE cancer yet.  They could only help people who had cancer fears AFTER they had been diagnosed.

Then I booked another appointment with the original surgeon in the first hospital who understood me a bit and finally he sent in a nurse who socked it to me "brutally" the way I asked her to.  (I had told her that not only was I terrified of the biopsy but also of my own fears so I wanted the cold hard truth, with no hidden secrets.)

What a fantastic job she did.  I wish there were more nurses like her!     When doctors and nurses don't tell patients enough because they are more concerned about bedside manner and scaring the patient, they really scare some types of patients.  After she laid out all the gore, even giving me a website where I could see what could happen if I left it, I could relax more knowing she had been honest with me and hadn't hidden anything, so I agreed to go. 

In the end I was still upset though because the papers they gave me said the biopsy would take 1-2 days to heal and not the 2 weeks it did.   Why do those papers say 1-2 days?  I hate it when patients are only told things in the BEST light instead of also the worst so they are totally unable to "estimate" that the truth might be somewhere in the middle.  Now I became aware that even the cancer pamphlets they distributed were deliberately misleading. 

This also makes it difficult for people who work because they then have to turn around and ask their bosses for an "extended" period of absence and the boss gets upset too because the papers say 1 to 2 days.  They don't understand why the patient needs more, so the patient may have to go back to the doctor again to bring in another note.

Getting back to this most wonderful and amazing nurse, she explained that it was only a myth MYTH that 70 to 80% of all biopsies were BENIGN.  That was only the case for cancers that looked like cysts.  The reason cysts were biopsied was because if 30% were cancerous, they felt it was worth it.  

The shocker was that mine wasn't likely a cyst.  It was star shaped and most of those WERE cancerous.   If they had told me that a year and a half earlier I likely would've gone for the biopsy as I would've received enough scare AT THAT TIME to "jolt" me into having the biopsy.

   
Finally I went for the biopsy and they put it in the fastest RUSH basket possible.  They said it would take 1 to 10 days to get the results back.  Each day I waited in terror like a prisoner waiting for his hanging notice.   Every minute felt like an hour. 

On the 11th day I got my results back.   Wouldn't it be better to tell patients that most results come back in 5 to 15 days instead of 1 to 10?   When it doesn't come in by the 10th, then the patient is convinced something must've gone desperately wrong!   Maybe they were studying the samples longer!  Well, something was wrong.

It was DCIS but was slow growing.

While waiting the year and a half, I developed numerous other problems so I think the cancer may be all over the body by now.  On one test my platelets were low too.  The doctor said not to worry.  Forgot to tell you I also had lined up calcifications  a year and a half ago, which I knew about, but because I believed in the 70 to 80% myth I didn't pay much attention to that.  Also had a pituitary tumour which makes the cancer situation much worse because that causes cancer to "become organized" and head directly to the lymph nodes. 

Would you believe I currently also know of two others who have delayed breast cancer treatment for even longer than I have because they believed this myth?  I wonder how many other millions of women are also in this situation.   I wonder how many thousands will die because of their belief in this myth?

Women need to be advised much more about the results of their tests and they need to have them clarified.

Now I have to go through some really horrible things before surgery.  Again I'm in total shock and disgust that they didn't tell me this beforehand.  I thought that once the biopsy was done, all I would have to do before that was go for surgery and that would be that.   Even people with anxiety don't want to be treated with kid gloves, like children.

I wish medical people wouldn't constantly make things appear so "cushy and soft" because when patients find out it's not that way at all, they feel really deceived and it's so much harder to deal with. 

I think that if you asked most cancer patients about what they were most upset about regarding their entire cancer treatment they would tell you that they weren't told the cold hard truth!     Patients WANT to be told BOTH sides, not just the pretty, beautiful fairy-tale outcome.  Worse yet, when they don't get that fairy-tale outcome, they don't want to be told, "Well yours must've been an exception" because it won't take long to find out that they have been lied to once again.  

What a horrible blow it was to hear the tone also, after the biopsy results came in, "Surprise, lady, now wait until we tell you about the extra butchery you must now undergo "before" the surgery which will be booked within a few weeks.  We thought we would keep that a secret from you until after the biopsy was done." 

OK, so they didn't say that but they may as well have.  I'm in shock and am scared to death and want to run once again.  When they keep patients in the dark it makes them think they are still hiding another 10 more butchery surprises in a row.   

I wish patients were allowed to sit on "boards" that discuss their treatment instead of being treated like donkeys who must only be shown a carrot on a stick.   When they aren't included, they also feel a bit like lab rats, and it makes them wonder what the doctors are planning behind their backs once again.

Although I can also understand the fears of the medical profession not wanting to scare patients, I wish they also understood why so many cancer patients become so angry, fearful, and distrusting.

There are two types of people I think:

One type needs to think positively because they can easily handle the blows if they are negative.  Life has often come easily for them and they have learned to handle things well.

The other needs to think negatively because they know they can't COPE with things that are worse than expected.  They are aware they don't handle shock as well as the first group, and that it can take them months to recover from shocks that would take the first group only a week to recover from.  In other words, their negative attitude a form of protective self-defense that "PREPARES" them so they can more easily cope.  When they aren't allowed to cope in this way because they are expected to think and behave like the first group, it's really a blow.

Maybe cancer people know a lot about cancer but I wish they knew more about people.   If I had been scared enough right from the start, and they had let me know that what I believed was only a "myth" I might not be where I am today.So if any cancer specialists are reading this, I hope you tell all your patients the difference between cancers that look like cycts and star shapes.  That's probably the most important thing you could ever tell them.   Thanks.