Medical record: what would you do

Nice post, Beesie, or maybe I should say, cheers

A woman who needs our support has fled this forum. I don't think we should lose sight of that or why it happened.

As usual, Bessie is a voice of reason and as usual she has provided accurate information to counter the misinformation perpetuated by some of our sisters. My onc, surgeon, radiologist and gynecologist have also expressed doubts about the breast cancer/alcohol studies, and some of the reasons were mentioned by nnn - and mocked by some of our sisters who don't even understand the basic information that the studies convey.

These are some of the most common misconceptions about the alcohol risk/benefit studies that nnn tried to convey before she fled this forum:

First, risk of recurrence does not increase by 30% with more than 2-3 drinks a week. Lisa-e explained the difference between absolute and relative risk, but it bears repeating because the same fear mongering misinformation keeps showing up on these threads.

The findings of all the studies are expressed as relative risk. For example, a 50 year old woman has a 5 year BC risk of about 3%. The most recent study found that women who drank 3-6 drinks a week had a 15% greater (relative) risk of breast cancer than women who did not drink alcohol, which means a woman who drank 3-6 drinks a week would increase her risk from 3.0% to 3.45% - less than ½ of a percent (the 15% pertains to the 3%, so its 15% of 3% which is .45%)

Second, the problem with most, if not all of the studies on alcohol's risk and benefits is that the data that went into the studies is not reliable: (1) most are observational and lacked a control group and without a control group the researchers cannot definitely determine whether the BC increase is due to alcohol or something else; (2) the studies drew from self-reports and in the world of statistics, self report data is considered notoriously unreliable/understated; (3) the studies are not able to determine whether changing one's drinking habits over time - e.g. drinking a lot from 20-50 and then stopping at age 50 - made any difference. The evidence is weak and only suggestive - which is why the researchers and media always write "the research suggests", "the study suggests"; it is not definite that stopping drinking altogether will reduce a woman's risk of breast cancer. Anyone who has read the studies and peer reviews and understood what they read (as nnn did) would comprehend this very simple fact.

Third, for most women, the cardiovascular health benefit of drinking red wine will outweigh the small increase in BC risk. 11/2011 Washington Post article addressing the most recent study:

"Many experts urged caution, however, about overreacting to the new findings. The slight increased risk for breast cancer from such low alcohol consumption [3 to 6 glasses a week] was probably still outweighed for many women by the reduction in the risk for heart attacks, which by far kills more women than breast cancer."

http://www.washingtonpost.com/national/health-science/even-low-levels-of-alcohol-boost-breast-cancer-risk-study-finds/2011/10/30/gIQAbzfucM_story.html

And what are the heart disease stats for the United States?

"In the United States, 1 in 4 women dies from heart disease. In fact, coronary heart disease (CHD)-the most common type of heart disease-is the #1 killer of both men and women in the United States."
http://www.nhlbi.nih.gov/health/health-topics/topics/hdw/

I'm not saying anyone should or should not drink alcohol; what I am saying is that nnn mentioned all of the above in her posts. She has read the studies and she clearly understands the studies, which is certainly not the case with a couple of the sisters who responded to her post. She asked a narrow question - whether she should fire her rads oncologist - not because she's in "denial" about being an alcoholic, but because she reached her own educated and well informed conclusions about the current studies after reviewing all of the available evidence - and she said this in her posts. Moreover, nnn said alcoholism runs in her family, however as Bessie mentioned, she never said she was an alcoholic. Shoving those words in her mouth, mocking her, insisting she's in denial - that's not "repartee" - it's an attack and it's ignorant and cruel. How anyone can think this is appropriate behavior is baffling and sadly, this type of aggressive, unapologetic behavior happens all too often on these threads.

What her rads oncologist did amounts to libel and if disseminated, it could ruin her reputation, she could lose her job. I feel absolutely terrible (and I'm sure many of you do as well) that this woman, who came to us for support, has fled this forum. It's very sad and it does not speak well of us.

One thing to me is clear. Your file should include the doctor's assessment and what you have told  your doctor; those are not necessarily interchangeable. I have some experience with alcoholism. My husband drank beer every day for years and sometimes more than one every day. I never thought about him being an alcoholic; it wasnt until years later when our youngest son who is now 22 started binge drinking that I ever made the connection..neither did my husband. He has since stopped drinking; that was years ago and is on depression meds. He had depression issues so he definitely had no business drinking. Our son was caught up in genetic issues, peer pressure and his own depression over a family crisis with my husband. Both husband and son went to AA meetings. My son did well at first but is drinking again...not too excess but still drinking. While he doesnt binge drink anymore it still concerns us that he drinks. I think the doctor has the obligation to offer her medical take on the situation but that's where it stops. She is probably protecting herself in the event something happens to you because you chose to continue drinking. Doctors are a bit paranoid about malpractice these days and while that is understandable some doctors go too far in that protection. The decision to drink or not is yours. I drink. Not everyday but usually at a party or a celebration and then a beer or too. I am not a wine drinker. My sister in law is bigtime and she too has breast cancer. Stage 0 but breast cancer just the same. My sister was just dx and she hardly ever drinks and doesnt smoke either. Her cancer is more serious than mine - I am Stage 2 or my sister in laws so all the dos and donts out there can only guess from stats...they really dont know why some of us even get breast cancer except we are just unlucky. 1 in 8 women will get breast cancer and only 10% is genetically connected. No one here should be your judge and jury. It is your life and you should do what is best for you. If you are uncomfortable with your dr - change. It is so important that we have a good relationship with our doctors. I like my oncologist and rad oncologist. He was soft spoken and hard to understand sometimes but very straightforward. Take our suggestions for what they are worth. They are only our opinions. You know once you put a topic out there you are going to get all kinds of feedback negative and positive. At the end of the day doesnt really matter what we think.

Tarry,nnn,kitkat2011,

Glad to see that although you may not be posting,you are still around.

Kimberly, did it say "partial" mastectomies, or "modified" mastectomies. In the old days, they took breast tissue right down to the chest wall including muscle. It left horrid concave chests. Then they started doing "modified" which didn't take the muscles and another kind of mastectomy (had it on my non-cancer side) but darned if I can't think of the name...!!! that means they took tissue but no surrounding tissue. Hmm, explanation not coming out clear, but the point is that I have two different types of mastectomies on my chest. Looks the same to me!! I don't care what the records say because it's pretty obvious when I drop my gown that I have NO breasts. How frustrating it must feel to have to fight your own doctor over wording!!

Barbe, the wording was "partial" in the path report and then copied into the MO report.  I did not have radical, did not have partial.  For that matter, one line in my surgeon's report says that my right breast was the symptomatic one, when in fact it was the left.  Did I demand corrections of old reports?  No I did not. I brought it up with the physicians, individually, at our next meetings, and asked that the current report be more accurate.  The report by MO also said my sister had bilateral breast cancer, which she did not.  She had unilateral.   Sigh. I do understand why NNN would want an inflammatory assumption made by the physician expunged, it that's what it was.  As a transcriptionist and ex-AA member, I did have a report of an alcoholic woman who I was familiar with from AA that could put away a quart a day of hard alcohol, no problem.  The report I was typing said she did not drink.  Oh...really.  Big laugh for me that day.  So...I guess patients are not always honest with their doctors.  I guess doctors know that patients are not always honest with them.    Sometimes this leads them to make the wrong assumptions. My own dear aunt says some things are none of their business and routinely lies and told me that she did so.  It may be confusing for the physician but with the information she gave her physician, I agree that it was unfair to diagnose alcoholism and place that in her record, gosh, not to mention the quackery that she wanted her to attend AA.

Should NNN quit her evening wine with dinner or whatever.  My MO told me that patients have one of two reactions, either they think, what the hell, I am dying anyway, and the others change their habits trying to fend off the cancer.  I am an old dog and can't change all my habits.  I'm not even sure what is the major contributor to my having cancer.  In my case, I think it was genes.  I was diagnosed at 49-1/2 and my only sibling was diagnosed at 49-1/2 with breast cancer which is pretty coincidental considering our lifestyles and risk factors are not similar except for the gene thing. 

So, for NNN, some people change their habits, some don't.  Did alcohol trigger my cancer and did it trigger yours and what benefit will you have now from changing your habits?  That's a good question.  I tend to think mine was triggered and wired from my genes when 2 out of 2 siblings get breast cancer at 49-1/2.  NNN, good luck with all your decisions and your choice of physicians and maybe correcting your medical record.  I say vote with your feet and when the next doctor asks why you left your old one, tell them the facts, that they made assumptions that were not true and you could no longer trust them with your medical care.

What a wild thread.

Nnn, if you're still here, I'll address the medical record aspect of your original post. If you did NOT admit to being an alcoholic yourself, then your doctor misrepresented you. HIPAA laws allow you to have your record amended. You just have to voice a complaint (in writing or in person) with the clinic's HIPAA privacy officer. I'll bet the clinic doesn't have one--but they are obligated to know the HIPAA laws and your rights as a patient.

If they balk on amending your record, you are encouraged to contact the Secretary of Health and Human Services with your concerns.

Kimberly, beautifully written from the heart...

Vicks, I had 3 lumpectomies in the years before I actually had mastectomies. The divots normally filled in on my large breasts. But, on a small breasted woman, perhaps the excision showed permanently. I never considered my lumpectomies as 'partial masts'.

My sister, years ago, needed surgery for breast cancer and went for consultation.  The surgeon called her by the wrong name, the name of another patient. She chose a surgeon who knew who she was, maybe not the same surgical speciality, but someone who at least knew her name, and she felt safer for that.  I think she was safer for that.

Thank you cycle babe, 2 things certain to set me off are the subject of dense breasts, breast cancer, and what testing women are offered to catch it early, and the other is AODA, and how that is currently treated.  Thank you for forgiving my poorly stated remarks and strong opinions.

Diane, you said it well as did Kimberly. I shall pray for your son that he gets it right. A perfect example of addiction is Whitney Houston, a beautiful and most talented lady yet she could not escape the demons of her addiction. It is a disease and sadly, most addicts end up in institutions, jail or dead. There are times when I think having had BC is nothing next to the disease of addiction, starting to think it is a sad truth.

RIP Whitney, you were blessed with a voice of an angel yet cursed with the disease of addiction. May your voice be that of an angel now.

I read the recently-published studies as well.  And I enjoy an almost daily glass of wine before or with dinner.  My oncologists know I am a moderate drinker and neither has said anything about it.  As a matter fact when I recently finished radiation in the form of brachytherapy one of the nurses commented that I probably wanted to relax with a little wine to celebrate.  Don't know the answer but unless is it going to make a huge difference in possible recurrence I'm loathe to give up the wine.  Definitely not an alcoholic but definitely enjoy my glass.

 If alcohol dominates your life and you thirst for it and or can't say no after one, you may display symptoms of alcohol dependence.  Other than that it is one of the choices we make that may, or may not, have a greater, or lesser, impact on our health.  I may change my mind but for know I'm going to enjoy a bit of wine, just not as often as I did before I was diagnosed.