Attention Manufacturer of Mammography Machines!

Tuesday I had my yearly mammogram.  I don't really mind them...except for one little thing....something which seems to me like it could be easily fixed.  It is a design flaw.

No, I'm not talking about the squishing of the breast between the platen and the plate. Is is pleasant? No, but I understand why it must be done and I can handle it.  Like most breast cancer survivors, I tell them to squish my breast as hard as they can, and usually the tech's eyes get very large when I don't even whimper at the amount of pressure they administer.

What hurts more than this...and which is annoying because I think it can be easily fixed, is that the second view is taken at an angle.  The machine is rotate and you are supposed to hang onto the handle (which I sort of drew a maroon line to on the top)....the bottom maroon line points to the edge of the platen.  See the shape?  This pokey corner gets shoved into your armpit.  Tightly.  Painfully.   And the thing which bugs me the most is that if this edge could be rounded, it would hurt a whole heck of a lot less.  It doesn't come into play with the dead-on view...but man oh man does it hurt when that corner digs into the tender spot under your arm....all the while your breast is getting squished...but this armpit thingy hurts me more than the squishing....and it hurts my brain to think that this might probably be easily solved...if only the designers had to have a mammogram done on themselves with what they design....

So wake up you makers of mammogram machines! Please develop something that is less of a torture device...especially if part of the torture comes from something which isn't an integral part of the test.

Amusement at Form Letters

     Friday I received a form letter from the hospital which has been doing my mammograms since we moved to Troy.  I was sort of amused by it.  First, it was Dated Dec. 27, and it came in Jan. 11th's mail.  "Our records indicate that based on your screening mammogram performed on 1/116/2012, it is time to schedule a routine screening mammogram of both breasts."  Really? I wonder how they are going to find the missing one?  I am also amused by the "routine screening mammogram."  For breast cancer survivors, no mammogram is routine.    I also am somewhat annoyed by the fact that even though I have had breast cancer and am now at stage IV, the only thing that the insurance covers is "a routine screening exam."  In other words, a rather cursory look....a diagnostic mammo, they go over in more detail.

On the other hand, the letter goes on to say this:  "Be aware that many breast cancers do not produce symptoms.  Early detection requires a combination of monthly breast self-examination, yearly physical breast examinations, and periodic mammography according to your age and physician's recommendations.  Current American Cancer Society Guidelines recommend screening mammograms and clinical breast exams every year beginning at age 40."

So, some of this I like....especially the self-breast examinations.  Why? Well, because at one of the last times I took my daughter for her yearly physicals, the doctor said NOT to do self breast exams because "you often find false negatives."  Excuse my language, but WTF? I would rather have something checked out and find it was a false alarm than to have anyone go through the hell I did because I didn't know that at age 33 I was at risk of breast cancer....and my tumor was quite large and easily felt by the time I realized I wasn't imagining things.

Yes, I realize that it can cause concern.  Yes, I realize that following up can cost money.  But, I think that this hospital is to be lauded because it does point out that self-exams are still important.

I also think of my niece's experience. She is 30 and recently went in to have a breast MRI.  She had to fight for it, even though her mother was diagnosed with breast cancer at 45 and I was diagnosed at 34.  Why a breast  MRI? Because she is young, she has dense breasts and dense breasts make it difficult to see problems.  Her PCP bucked it. Her insurance bucked it....the oncologist she went to applauded her because she was doing exactly what she needed to to protect her health.

I am beginning to believe that the patient is often being left behind as the almighty dollar is what we are really protecting...or rather, the almighty insurance companies.  Remember, very few hospitals are charity hospitals anymore...most are for profit entities.  Insurance companies are not there to help us, they are there to make money.   I realize that this is very harsh and there are a lot of hard working men and women in the health provision field who do care about their patients and work hard to try to make sure that we live as long and as well as possible...but we would be ostriches to not look at the whole picture.

So...even if I can't seem  to find my left breast so that they can do a mammogram of it.....or maybe....maybe they want to try a mamm of my prosthesis...I still think that this reminder and the letter is a good thing...

Tomorrow is a Busy Day

Tomorrow is full of appointments. I will have to get up at 4:30 am to take my husband and the neighbors to the airport. Then, at 8:30 I have my yearly mammogram.

I am probably one of the only people in the world who says to the technician to press harder....what ever they need to do to get the clearest shot.

I know a lot of people worry about it. I don't. I look at it as reassurance, that they will catch something if it is there, and if not, then I get another year.

Do I like it? No, not really. Yes, it hurts. I think if men had to have them on a regular basis, we would probably have less expensive, and less painful methods to take a look. So in the meantime, I'll just grin and bear it... Going to court with my daughter for her traffic ticket is probably going to be a whole heck of a lot more painful in the long run. Repeat after me: "This is only temporary. "

New Mammogram Recommendations

I have been struggling with how I am going to approach this. When I heard the new government recommendations for mammograms, I was infuriated. However, as someone who has had some training in science, and more in maintaining objectivity in what I read, I needed to know more.

Part of the problem is that this recommendation is sheer statistics and looking at things from a financial aspect. We are not statistics. We are individuals. Part of me says that if one person is saved the horror that I have gone through, then it is worth it. Finding cancer when it is small rather than the 3 cm tumor I had when I started this dance in 1994 would probably have led to a better outcome for me and less invasive or drastic treatments. However, I was too young to have a mammogram (at age 34). I do know, however, several women who have been diagnosed in their 40s solely by finding it on a mammogram. So, what price is life? Who is going to determine which of us will find it at a later date or when it requires far more expensive treatments?

The comment that keeps on coming up is that 10% of mammograms produce false positives. Is it 10% of mammograms, or is it 10% of the mammograms which find things produce a false positive (which of course would be a much smaller number). While I suppose that if you had a false positive, it would be a pain to know that you went through the biopsies only to find it wasn't cancer after all (and I only know two people that this happened to, both women in whose families had lots of deaths and diagnosis of breast cancer), but I would think it would be a relief.

I wanted to find out what other countries did. How do they approach screening for breast cancer? I wasn't able to find it easily....heck, when I googled it under a variety of methods I couldn't find it at all.

I was also appalled at the recent recommendation that women not do self-breast exams. If I had done them and BELIEVED in what I found, then I probably wouldn't have spent 12 years of my life dealing with stage IV breast cancer. I probably would have found the cancer when it was smaller (as I did find a thickening and asked my husband if he thought it was anything --dumb dumb move, but I thought I was a hypochondriac...why did I have to worry about breast cancer? It wasn't in my family). Women who do self breast exams regularly know where their lumps are. If they feel a problem then they can check it out.

The response to that recently has been "well, usually women find it by accident (well, yah, if we don't do breast self exams, and I think the majority of women aren't too religious in doing them), and it would have to be fairly big if the tumor is deep." I'll grant you that...but I can honestly say that the tumor was MUCH larger when I waited for six months. Besides, what harm does it do? Again, if one woman finds something suspicious and checks it out and finds that it is cancer, then it works. If another woman looks for 100 times and finds nothing, then lucky her.

I think that most of us are afraid that by issuing this recommendation that soon insurance companies are going to use it as a mandate to not cover mammograms in our 40s. While today I saw that "insurance companies assure people that they are not going to change their coverage" I feel that this is bolderdash and it will only be a matter of time after the furor dies down that this is changed. After all, my own insurance company stopped covering wigs for women undergoing chemo as it is "cosmetic and not necessary" (fine for some women, not so fine for others....).

In addition, for doctors (and the Surgeon General) to just say "keep on doing what you're doing," and to "make the decision on your own" or "decide what is right for you" maddening. I know that it is better than it was for us in that we can participate in chosing our treatment, however sometimes getting advice or even the information we need to make the decision is like pulling teeth. Sometimes I feel like we are having to be our own doctors....and after all, how can we who do not have medical degrees and have the background make such decisions? I don't want a doctor to be imperialistic, but I do want a doctor who gives sound information, ON BOTH SIDES of the issue and points us to the studies and explains them so we can make a decision.

The other aspect of this whole thing, the recommendations for mammograms and the advice to stop doing self-breast exams, is that it trivializes breast cancer. I know, heart disease is still the number one killer of both men and women in the United States and we should pay particular attention to that, but I think that both heart and breast health is important.

I am particularly incensed at this "Breast cancer campaigns have helped raise awareness about breast cancer, as well as money for research. But all those pink ribbons have given women an inflated fear of the disease – and unrealistic expectations about the benefits of mammograms, says Lisa Schwartz, a doctor at the Veterans Affairs Outcomes Group in White River Junction, Vt." (the whole article may be found here). I wished to the ends of the earth that I had known that I was at risk for breast cancer just because I am a woman back in 1994 when I was first diagnosed. I can assure you, Lisa Schwartz, that we have REASON to fear breast cancer. I have spent most of my adult life fighting to stay alive just because of it. SHAME ON YOU! I want to know why more than 5 women from my graduating class have been diagnosed with breast cancer before the age of 50 (the graduating class of men and women from my high school was 96), three of us before we were 40 and one of us is now dead. If these aren't statistics to make you fear the disease, I don't know what is.

In addition, I'd really like to have my breast back. I would really like to have healthy bones which are not weakened by a six month course of treatment of CAF and a 9 month course of treatment of Taxol and having my ovaries removed. I'd really like to have a daughter who would remember what we did fun together, not remembering what I couldn't do because I was either in treatment or recovering or dealing with the side effects of the treatment to my pelvis.

I believe that early detection saves lives. I just can't believe that the "powers that be" are now suggesting that we not use the tools for early detection.