Lipomas and PTEN Mutation

lipomas(Not the most flattering picture of me, but I’m not big on selfies anyway. At least my Pusheen shirt looks good!)

So I recently had yet another surgery. Yes, another one.

There was a palpable tumor in my abdomen. Due to its location, hardness, and size–along with the fact that it had suddenly become painful–my oncologist thought it should be removed and biopsied.

As the surgeon could not positively identify the tumor as a lipoma, a benign fatty tumor, she refused to remove it in the office, which meant another full surgical procedure.

I was going to be sedated no matter what, so I convinced her to remove all of the lipomas from my left arm. Unfortunately the ones on my right arm will have to wait another year so that the risk of lymphedema is lessened. (According to my surgeon, if a breast cancer patient reaches the 2-year mark after a bilteral mastectomy without having lymphedema, then the risk for problems in the future goes down to 10%.)

All in all, my surgeon removed 23 tumors from my left arm and one from my abdomen.

Lipomas are an annoying part of having the PTEN mutation. While they are not cancerous, they are unsightly, and they can create pain if they grow too large or are in an awkward part of the body.  For example, in 2000, a lipoma suddenly began growing in my right breast. In the space of just a few months, it grew to the size of a baseball, so large that I could only wear loose t-shirts until it was removed. The pain and embarrassment from that lipoma are still with me to this day.

Honestly, I hate lipomas.

I have lost track how many of these tumors I have had removed over the years. The pain and expense of all of these procedures have reached ridiculous proportions.

This is the life of someone living with Cowden syndrome. For us, it’s much more than an increased risk for various cancers. It has a widespread effect on our bodies and our well-being. Plus the enormous toll on our finances to continually support numerous surgeries and various treatments.

We become a curiosity and professional pincushion. Such is the life of a PTEN’er.


PTEN and Feminine Issues?

PTEN and Feminine Issues

So the hysterectomy happened…

I have had many surgeries during my lifetime, but I can unequivocally say that this was the most painful one so far. I spent a couple of nights in the hospital and have been recuperating since then.

Although I could discuss the emotional impact of the surgery, I am honestly still trying to figure that out at this point. So I’ll stick with just the facts for now.

When my gynecologist reviewed the pathology report, she stated that she had never seen reproductive organs that were so diseased and covered in tumors. All of it was benign, but it was everywhere. Considering the extent of the problems, she said that this would explain the extreme pain and heavy bleeding that I experienced each month.

Here’s just a sampling from the pathology report:

  • Endometrial polyp, benign
  • Benign inactive indeterminate pattern endometrium
  • Leiomyomata
  • Adenomyosis, florid
  • Endometriosis and fibrous adhesions
  • Ovary with a benign mucinous cystadenoma, endometriosis, and serosal fibrous adhesions
  • Fallopian tube with serosal endometriosis

It goes on and on, but that should give you an idea of what they found. If you’re having trouble wrapping your head around all of those terms–like I was, to be frank–I was told that the disease and tumors were so extensive that my uterus could no longer function as a muscle, that it was simply a sponge. And that was only one part of the entire problem!

I have had painful and heavy periods my entire life, and at no time did any of my regular exams find anything. When I would try to explain my issues with a gynecologist, I was dismissed, with the doctor saying that my reproductive system was “healthy” and I was most likely exaggerating.

Too, after my first cancer diagnosis, I had difficulty finding a gynecologist who wanted to treat someone with a history of breast cancer at a young age. But that’s a whole ‘nother problem in itself.

So the question at this point is this…is all of this related to Cowden Syndrome? I did find this article that references gynecologic problems related to the PTEN mutation, but it only mentions uterine fibroids.

Hopefully further research on the PTEN mutation will shed more light on its gynecological impact.

For those women who have been diagnosed with Cowden Syndrome, however, it may be advisable to push your doctor for more tests than the regular yearly exams, especially if you are having serious issues with your periods. It is certainly possible that all of the disease found on the path report was unique to me alone. But I would hate for another woman to go through 30+ years of awful monthly visits from “Aunt Flo” before they discovered the problems with their reproductive system.

When it comes to rare disease, I guess the final lesson is to take charge of your healthcare and make sure you are getting the treatment you need.