. . 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.


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.


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.


And an abstract of the original study cited above:


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.


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.

Rug Hooking Wool


  1. Thank you for all your information . I am 26 years old and have been having irregular periods since 16. I was diagnosed last year with PCOS. And your blog definitely helps me not feel alone. About the infertility issue...I'm sorry to ask but has that affected you personally?
    Thanks again for all your info


  2. I appreciate the information you are sharing here. I have PCOS - diagnosed around 3 to 4 years ago. I have 2 sisters - one diagnosed with PCOS - had it all her life, the other not diagnosed - but never pursued looking into it. They both developed estrogen related breast cancer in their 40's. They both will be on Estrogen pills of sorts for the rest of their lives. All 3 of us have different fathers. No history of breast cancer. I am concerned about my own health. I am the heaviest of all. Losing weight is a struggle. I seriously look at weight and gain. But I have been curious about a connection between breast cancer and PCOS. I ask my doctors about it, but they say there is not much known. I appreciate you discussing this. Thanks.

  3. I'm 26 years old and was diagnosed with PCOS about five years ago. Losing weight was impossible until I went on the pill for about six months. It seemed to knock everything back into rythm - that was three years ago and the excess weight has thankfully stayed off until now, and my periods have been regular since then. But the last few months have been slightly less regular, and last week I found a lump on my breast. Have been to my doctor and am being referred to a breast clinic - it's very possible it could be a breast cyst, I'm hoping it's nothing worse. I straight away wondered could there be a connection with breast cysts or breast cancer with PCOS. A lot of the causes seem to be similar. Thanks for your research.