. . My Own Story -- The Long Journey Back to Normal

I was diagnosed with DCIS breast cancer at 49, during a routine mammogram. After a large lumpectomy, we found that the area was bigger than previously thought, and the pathology report showed that my cancer was the nastiest kind -- '9' on the Bloom-Richardson scale of 1-9-- the highest possible rank for aggressiveness and likelihood of recurrence. Lucky me. So, although DCIS is usually treated with a simple lumpectomy followed by radiation, it was recommended that I have a mastectomy to keep the chance of recurrence low. So in December 2008, I had a left mastectomy and reconstruction. Some say that this procedure is one of the most grueling and painful to go through, and I would have to agree--this was by far the the hardest thing I've been through. But I am so grateful that we live in a day when we don't have to die of breast cancer if it's caught early.

I'm fortunate to have a quizzical mind, and through it all, I stayed very near the web. I love having information of all kinds just a keyboard away. I spent about two months searching the web for information -- the best doctors, the latest techniques, the latest breast cancer advances, as much as I could find -- it was painstaking work ferreting out all this information, which was all over the place. As I went, I bookmarked anything that looked interesting. I realized lately that having this information all in one place could be a tremendous help to others, so I am compiling it here for you! I also plan to continue to seek out the latest, and pass it along when I have it. It is likely that you're here because you or a loved one are also battling breast cancer. If so, know that you have a comrade-in arms. Over time there will be a lot of information gathered here, so please take a look at the archives, as well, and poke into all the corners.

See the archive below to navigate through the posts.

Welcome, and I hope you will find some answers here.

Sunday, April 25

PCOS and Breast Cancer

I have PCOS. For those who have not been blessed with this health problem, let me share the joy. PCOS stands for Poycystic Ovary Syndrome, a condition where the ovaries do not ovulate as they should, but instead the egg is retained in the ovary and covered over in a cyst. These cysts multiply in a diseased ovary, thus the name of the syndrome. PCOS is poorly understood, as are its causes, but the upshot is that the lucky recipient of PCOS will suffer from a host of irritating-to-devastating problems, and as time passes is at greater risk for severe health problems, which are just now being understood by the health community. To name a few: irregular menstrual cycle, almost certain infertility, excessive hair growth in unwanted places, adult acne, male pattern baldness, excess weight that is hard to lose, depression, high cholesterol, high blood pressure, and greater risk for diabetes, insulin resistance, heart disease, and endometrial cancer. I could go on. It makes one appreciate the delicate balance of the hormones that govern the bodily processes, and regret it greatly when that balance goes awry, as it does with PCOS. Two of the main culprits are excess androgen, which causes a host of male-type features in a woman, and unopposed estrogen in the body for long periods of time, due to a lack of progesterone production when regular ovulation is not present, as with PCOS.

This is not a blog about PCOS, but I mention it because there is some evidence of an increased risk for PCOS patients of some cancers, especially endometrial cancer, and a likely connection to some breast cancers. So if you have PCOS you will want to be vigilant in looking for symptoms of these, and making sure to get regular screenings and mammograms. The link between PCOS and breast cancer is not clear yet, but personally I believe that it will be in the future, as more studies are done. The link below shows a pdf file of a discussion of PCOS and its associated cancer risks. This link takes a balanced approach about breast cancer, stating that the connection between the two is as yet unclear, but that more recent studies suggest that there may be a connection. In fact, my own oncologist in New York told me to be on the lookout for breast cancer in the other breast later, more than the average woman would, because of my hormone issues.

http://humupd.oxfordjournals.org/cgi/reprint/7/6/522.pdf

The link below provides a very insightful overview of the syndrome, and I recommend it to anyone here who has PCOS, just for your own understanding of the health risks that await you, unless you take measures to adjust your lifestyle to accommodate your condition. I learned a lot about my own problem, and I could see from the descriptions of the variations of the disease that I most likely belong to a certain subset of PCOS patients that are not infertile, but do have many of the other symptoms. I wish I could say I learned this from a doctor, but after 30 years of living with it, and talking to at least a dozen doctors about it, I have yet to find one that will talk to me in-depth, knowledgeably and sympathetically on the subject. In the past, this condition has been regarded as benign and not much more than a nuisance, and so its treatment has not been taken seriously, if it is diagnosed at all. For instance I  diagnosed my best friend's PCOS, not  her doctor. In years past, if it was  diagnosed, a woman was told to lose some weight and exercise to take care of the problem. While this is certainly a helpful approach, believe me it is easier said than done with PCOS, when you are trapped in a body hell-bent on hanging on to its fat supply.

The commentary below also takes the balanced approach regarding breast cancer, but states that a connection is likely, although not as yet demonstrated in the few, small studies that have been done thus far.

http://jcem.endojournals.org/cgi/content/full/84/6/1897

And here is a great article that also cites an early study done at Johns Hopkins University by Cowan et. al. Read further on down, where it discusses women with low progesterone levels related to cancer.


http://laurawalters.wordpress.com/2008/11/15/a-special-edition-of-the-hopkins-health-watch/

And an abstract of the original study cited above:

http://aje.oxfordjournals.org/cgi/content/abstract/114/2/209

The connection between insulin resistance and breast cancer is much clearer, as shown in the link below, and a significant percentage of women with PCOS develop insulin resistance. This may be the pathway by which studies eventually identify the increased risk of breast cancer in PCOS women.

http://www.ncbi.nlm.nih.gov/pubmed/1399128

So I don't want to be alarmist, but if you have PCOS, or suspect that you might from the symptoms I have listed, take care of yourself, and protect yourself as much as you can with regular check-ups and yearly mammograms.You may even want to consult your doctor about using bio-identical progesterone to balance the estrogen in your system. The use of bio-identicals, especially progesterone, is newer, and you may have to look for a doctor who has a good understanding and appreciation of the value of this.

Also, I can say personally that eating a low carbohydrate diet has helped me to keep weight off, and I know that eating this way can only help prevent insulin resistance, heart disease, and diabetes down the line.  So I recommend it to you, in fact I will even recommend an eating plan called 'The Carbohydrate Addict's Diet', a paperback book that outlines a great low-carb plan that can be followed permanently without giving up carbs forever. I eat a low-carb breakfast and lunch (which I have come to love) and a regular dinner with the family, including carbs in reasonable amounts. If I want cookies or ice cream, or rice or bread, I eat it in moderation with that meal. I have been able to sustain this plan for a number of years.

None of these links is as recent as I would like, but I am always on the lookout for new information, and as I find it, I will pass it on to you. There is a lot of other information on the web about PCOS, and this has increased greatly in recent years, so take advantage.

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Monday, April 19

A Long and Possibly Boring Chronicle of My Experience

I have written a few online articles, and one is about my experience with cancer. I suppose I could just put all the text in here, but I thought it might be more fun to send you on an errand to another site -- especially irritating if you have dial-up. Slap my hand in the comment section if this makes you unhappy!

Breast Cancer Article

Get That Mammogram!

Lesson #1 that I learned in my experience was not to put off my mammogram. Never again. Why? Well, I got the notification for my annual mammogram in April 2007. By April 2008, I had looked at that piece of paper at least 365 times, and put off calling -- I will never understand why. Finally, I pulled it out of my 'In' box and just picked up the phone. So easy. The tragedy for me was that it was during that period of time that cancer quietly grew in my breast, getting large enough to force me to decide between a lumpectomy (which would have left my breast and all feeling and function intact) and a mastectomy, which was 10 times more difficult, painful, and  expensive, and left me with a 22-inch long scar across my belly and a rather strange looking breast that is completely numb, with no nipple.

Which would you rather have?

And don't think that you will just find the lump when you or your doctor do a breast exam. The kind of cancer that I had, and that many, many women have (Ductal Carcinoma In Situ), will never be felt during a manual breast exam until it is far more advanced.

Call and make that appointment now.

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