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.

 

Adventures of the Flat and Infertile

adventures of the flat

My next step in treatment is about to commence. Yes, the dreaded hysterectomy has been scheduled for next week.

Nothing like sitting in the waiting room of a gynecologist’s office to make you feel a bit conspicuous. Childless, flat, and there to schedule a hysterectomy.

When I met with the doctor and had my initial exam, I was somewhat surprised to find out that I wouldn’t be able to have a┬álaparoscopic hysterectomy due to my size, fair skin, and lack of childbearing.

Who knew that being a petite, redheaded woman with breast cancer and no history of childbirth would be a drawback when it came to this surgery?

I will be undergoing a full abdominal hysterectomy, with the one large incision on my abdomen. The average hospital stay is about two days, with recovery about six weeks.

Honestly, I’m dreading this surgery, but I’m ready to have it done. At least this will eliminate the Zoladex from my current medication regimen. Although it doesn’t cause me any side effects, I will no longer have to go in for the monthly injection of the implant.

Too, as a patient with Cowden Syndrome, I’ll be eliminating one more possible risk in having this surgery done on a prophylactic basis, way ahead of any cancer developing. As I’ve already had my thyroid and breasts removed, I suppose I’ll doing pretty well as far as future risks are concerned.

And frankly, I’m pretty sick of cancer at this point. I’ll do what I can to avoid any further encounters with the beast.

I’ll be offline for a bit so that I can get things prepared in real life and psyche myself up for this next round in the surgical suite.

See you soon!

Mother’s Day and Breast Cancer

Mother's day cancer

My mother died in 1999 after a recurrence of breast cancer.

With little information at the time–no internet, only the beginnings of patient rights–we didn’t recognize the signs of a recurrence until it was too late. Her behavior began to change over time, showing signs of recklessness and forgetfulness. And then she suddenly had trouble walking, having collapsed at home.

Doctors in the ER informed my father that a scan revealed tumors along her spine. She was released home with pain medication, but little else to do as far as next steps. Her extreme reaction to chemotherapy in 1992 precluded any more chemo treatment for the recurrence, and so we were left with pain management and the awareness that her time with us would be limited.

After a call from my father, I drove home from college. She died the next morning on our couch.

Since then, I have regularly avoided going out on Mother’s Day, and that now includes social media as well. People say that the pain and loss of losing your mother–or any other family member, for that matter–lessens over time, but I believe it is more your learning to live with the loss.

And now this year, I have breast cancer yet again. The same cancer that killed my mother so long ago.

I am finding this day to be more difficult than I expected. My flat chest, many medications, and constant pain only serve to remind me of my mother in the most horrible way, that of a shared illness and possible death. And the celebrations that litter my Facebook stream only enhance that awareness.

My mother was loving but a rather complicated woman in that she had a misdiagnosed mental illness. If she had lived longer, she might have been able to receive the treatment that she needed. I know that she did the best she could considering her struggles, and I will honor her for that.

But I cannot join in on the celebration of this holiday, especially this year. I loved my mother despite everything, and the pain of her loss is still too great even after all these years.

If this is the first Mother’s Day that you face alone, please know that my heart and prayers are with you.

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.

 

When Life Stops

When Life Stops

It will soon be almost a year since I was diagnosed with breast cancer for the second time.

It seems like life has effectively stopped for me, leaving me untethered from all that provided me with the structure of daily life. While my work once created the boundaries of my days, now the treatments have taken over that role, resulting in new, smaller borders and limited capabilities.

Depression has set in big time.

Although I have struggled with this much of my life, the onset of this most recent episode started not long after I began taking Anastrozole, which can cause depression and insomnia, among other things. The depression with Anastrozole is different than any previous darkness. It is much deeper and foggier, with fatigue as an added weight.

I’m gradually moving out of this depression, but it is taking time. Still, there is some progress.

I was blessed to be prayed over twice this week, and I feel a lightening in my spirit even though my circumstances are still the same.

Things are changing, and I believe that this spring will bring new opportunities.

Right now I feel the need to focus on recovering spiritually and emotionally after all that has happened this past year. That means more private time, more scripture, more prayer. Clawing my way up out of the darkness bit by bit.

Until my writing juices are up and running again, take a moment to read this article that I wrote for Compassion That Compels, a great organization. If you have a bit of extra money this month, please consider making a donation.

And if you need prayer, please comment on this post with your prayer requests. Even if I can’t hug you or offer you a cup of coffee, I can be there with you virtually, praying and believing.

Venturing Out

Venturing Out

I went to church on Sunday. This was my first real outing since my surgery and of course, radiation.

Everything was wonderful except for the pain.

Now that I have technically finished active treatment, people look at me and seem to see just a normal, healthy person. So many memes now mention “hidden” illness and pain, and I suppose I have an intimate understanding of this after beginning Anastrozole. Others don’t get why I continue to experience pain and fatigue, both of which urge me to stay at home.

As one person said when I mentioned that the drug causes pain, “But medicine is supposed to make you feel better!”

Precisely.

Going out and about can be a cause of anxiety for cancer patients. Our bodies no longer look or act like they used to, and facing healthy folks’ reactions can be a bit of a scare. Add pain to the mix, and it’s all too easy to stay at home.

Cancer treatment can often mean accepting the Devil’s own bargain. The various treatments offer the possibility of a cancer-free life, but that life may be one of pain and illness. We accept that awful bargain, though, because we love our families and want to stick around for a while.

Puttering around the house and allowing myself to rest when needed sound much more pleasant nowadays than social interactions. Cancer changes you, and it ages you.

The pain should subside after a few months on the medication, but until then I may have to learn to just say “No” when it comes to going out with others. Hopefully folks understand.