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.

 

Things I Didn’t Know about Estrogen…

Things I didn't know about estrogen

Although fertility is an issue for so many women facing breast cancer, it has never really been a problem for myself or my husband. We decided a long time ago that we did not want to have children, and we’re still content with that decision.

Too, if a hysterectomy and anti-estrogen therapy just removed my ability to have periods, I’d be totally fine with that. My periods have always been horrid, and cancer treatment has brought me great relief in this part of my daily life.

But as I get deeper into my anti-estrogen treatment and think about scheduling my hysterectomy, I realize just how important estrogen is to our bodies.

Now, I realize that menopause is a natural occurrence in a woman’s life, but chemical menopause is something else entirely. There is no natural transition over a decade or so into a crone. Chemical/surgical menopause is instantaneous and harsh, affecting every part of a woman’s health and lifestyle.

And all too often, breast cancer patients who face this are much too young to even be in peri-menopause, much less the beginning stages of menopause itself.

And no, HRT is not an option. Some people that hear about my being treated with Anastrozole mistakenly believe that this drug is a form of HRT and thus “balances” my hormones to relieve the symptoms of menopause.

Actually, the opposite is the case. The drugs that I take further decrease any remaining estrogen in my system after a hysterectomy, or as in my current state, in conjunction with Zoladex, which shuts down my ovary function and allows me to take the Anastrozole.

So what have I discovered about estrogen now that it’s gone from my body?

(Or at least being chemically suppressed.)


It’s important for eyesight. Even with my fairly new prescription for bifocals, I am increasingly having difficulty reading, which is one of my favorite pastimes. Books almost have to be loaded on to an e-reader so that I can adjust the print size, and even a large print Bible is too much of a strain on my eyes at this point. This has been a surprising and really disheartening side effect of this treatment.


There are increased problems with insomnia. Stress is obviously part and parcel with cancer treatment, and this can most certainly contribute to an inability to sleep. But when hormones suddenly drop, as with the Zoladex–and eventually a hysterectomy–along with the Anastrozole, it becomes more and more difficult to sleep.


It’s important for memory. Although the linked article seems to have a mixed view on the topic, the significant part in the language seems to be that the combination of chemotherapy and anti-estrogen therapy produces a worse result cognitively. (At least that’s how I’m reading the medical jargon.) Too, I have to wonder how many of these women in the studies are truly post-menopausal or have had it induced so that they can take the anti-estrogen therapy.

I am hoping that more research delves into the experiences of younger women with chemically/surgically-induced menopause who are taking anti-estrogen therapy. You can find comments about Anastrozole and similar therapies from women on The Underbelly’s Facebook page.

I struggle now to complete even simple tasks, and my ability to think creatively and to write has been significantly impaired. Recalling even simple words or memories can be extremely difficult for me now. That “it’s on the tip of my tongue” sort of feeling is a constant, everyday thing. I seriously wonder if I will ever be able to function normally in a workplace setting while taking these drugs.


It’s important for bones. Honestly, I already knew this, but I suppose I wasn’t aware how significant a part anti-estrogen therapy can be in the weakening of bones, thus putting even young women at a high risk for osteoporosis and broken bones. As a part of this, of course, another side effect of Anastrozole is bone pain.


It’s important for your heart. And unlike the information in the linked article, HRT is not an option to deal with this particular side effect.


It’s important for weight control. There is also the additional problem that anti-estrogen therapies often cause weight gain, whether through the effects of the drug itself or the lack of desire to exercise due to the constant muscle and joint pain.


I’m sure I’m missing more of estrogen’s effects throughout our bodies, but you get the idea.

(Just wandering through my virtual home at the moment, scratching my head and wondering why I came into the kitchen. And when someone says something to me, I say, “Eh? What’s that sonny?”)

Although menopause in your 50’s and 60’s may be natural, that experienced by younger breast cancer patients is not. The side effects of the surgery and treatments are severe and long lasting. And pervasive.

I suppose if you are still healthy and enjoy the effects of estrogen in your body, my advice would be something akin to that of Robert Herrick, in his poem, “To the Virgins, to Make Much of Time”:

Gather ye rosebuds while ye may,
Old Time is still a-flying;
And this same flower that smiles today
Tomorrow will be dying.

 

The First Rule of Cancer Club

first-rule-of-cancer-clubSometimes it’s best to just keep things within “Cancer Club,” those of us who have been there and understand the ups and downs of the illness. Cancer pushes the absurdity of living to the extreme, whether in the physical or social or emotional realm. And often even the most loving friends and family members will not get it.

I suppose it would be similar to the first rule of Fight Club: There’s no use talking about certain issues related to cancer with those who have never fought it.

Recently I was told by a dear friend that I should not worry about clothes and such, that those things are simply vanity. Honestly, I understand the perspective that regaining health should be more important than appearance. I get it. However, “living flat” in a society focused on buxom women is difficult.

When I had my bilateral mastectomy–surgery without reconstruction–I realized that breasts were everywhere. They are part of our society’s views on sexuality, womanhood, and self image. Women’s clothes and lingerie and fashion are built around them.

Basically, if you’re a woman, then you have breasts, and you learned early on in life that they are important.

And once they’re gone?

Breast cancer has forced me to come to terms with what makes me a woman. Also, on the more practical side, the surgery has compelled me to look at my clothing differently as I could no longer wear much of what was hanging in my closet. Suddenly being feminine had become a huge and seemingly impossible thing in my life.

And going out of the house among regular people who aren’t part of Cancer Club–people who only see the woman with the hair that’s just growing back after chemo and the flat chest–can be anxiety producing for me. Really, it can be hard to even imagine that I will ever feel comfortable–much less womanly–again. Because the only people who truly understand the issues of womanhood and breast cancer are either part of Cancer Club or work at your local Cancer Center.

So being called vain just because I worry about finding clothes that fit me now that I am flat? I wanted to scream. (I seem to find myself wanting to do that a lot lately, actually.)

Normal, healthy women, no matter their cup size, will most likely never be able to get it. And honestly, I pray that they will never have to hear the words, “You have cancer,” and then face an enormous surgery like a bilateral mastectomy.

Yes, regaining health and surviving cancer should be our focus. But for a woman with breast cancer, feeling feminine is also important. And regaining that feeling after breast cancer surgery and treatment is a big, big thing.


Cancer survivors want to feel beautiful and sexy. Check out the video of AnaOno’s fashion show in New York, which featured lingerie made for women living with breast cancer. Lovely and strong women–seven of whom are living with metastatic breast cancer–finally got their chance on the catwalk. Thank you, AnaOno, for creating lingerie just for us.

Nonprofit Spotlight: Compassion That Compels

compassion-that-compels

A few months ago, I was scrolling through my seemingly endless Facebook feed when I happened upon a post about the nonprofit, Compassion That Compels.

Already in the thick of my chemotherapy treatments and struggling with the side effects, I was sick and tired of it all. All of the pain and loss and illness and everything. I had become disheartened by the severity of the cancer as well as the loss of so much, even by that point in the treatment process.

So when I saw the post about this charity that wants to bring hope to women struggling with cancer, I had to click to find out more. After reading the simple and yet powerful mission of the ministry–“to reach every woman battling cancer with a Compassion Bag, reminding them they are never alone”–I decided to request a bag.

These bags are beautiful totes, packed full of inspirational goodies for cancer patients. From the Jesus Calling devotional to the lovely plush blanket, each item is a wonderful reminder that there are people who care, no matter how dark the fight against cancer might get. And that we are beautiful to God, despite what may be currently happening to our bodies.

I was fortunate that someone sponsored my bag, but there are many other women who are still waiting for a Compassion Bag of their own. If you can spare any amount, please consider making a donation to Compassion That Compels.

They are truly bringing hope and love to cancer patients through their caring ministry. Please help them reach others like me and spread hope throughout the cancer community.