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.

 

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¬†laparoscopic 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!

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.

 

Accepting the New Normal

accepting-the-new-normalAccepting the fact that your life will never be what it once was after a major illness can often be the hardest thing to overcome. It has been for me.

When my current cancer journey began in July of last year, I easily fooled myself into thinking that this would be similar to my first diagnosis in 2004. I thought I would go through surgery and treatment, easily sliding back into my old schedule and employment.

Hoping to return to work soon has often been my lifeline over the past several months. I happily remembered having gainful employment and feeling that wonderful sense of accomplishment when a particular task was completed. Despite the often stressful nature of my job, I loved the work. And I miss it even now.

But the progression of this particular cancer journey has been much different. The cancer is much more serious, and the treatments have been life changing. This is Inflammatory Breast Cancer, Stage IIIB, and I am now much older than when I was first diagnosed back in 2004.

My body and my life are now totally different than they once were.

I have had a bilateral mastectomy with no reconstruction due to various reasons…

I have been diagnosed with a rare genetic mutation that puts me at greater risk for multiple cancers…

According to the doctors, it is almost certain that I will face even more cancers in the future due to my diagnosis of Cowden Syndrome…

I have undergone another course of chemotherapy, which has caused pain and illness…

I am now undergoing radiation treatment to the same area that was treated in 2004. I am already burned and am in constant pain now…

Breathing has become difficult since the radiation started, which sometimes limits my daily activities…

The fatigue from the treatments just doesn’t seem to end…

I am now in chemically induced menopause, which along with the mastectomy, have basically destroyed my sexuality as well as caused long-lasting effects throughout my body…

After radiation, I face a hysterectomy and most likely 10 years of anti-estrogen therapy, which are known to cause extreme pain and weight gain, among other things…

I have lost at least 10 pounds and have been physically weakened by the surgery and treatments…

I may already have osteoporosis due to the treatments, and so may have to begin treatment for that condition…

And that’s just a short list of all the changes to my life that have happened so far, the beginning of my “new normal.”

And now I have found out the truth about the doctors’ current success with treating inflammatory breast cancer. While it has improved over the past 10 years, their success rate is now 50%. I have a 50% chance of being cured with all of the treatments that are currently available. If I happen to fall into the other 50%, then I have been told their ability to treat a recurrence would be quite low.

I have given up hope of returning to work any time soon. I have filed for disability, which has been something I have dreaded doing.

I do not want to be sick. I want to work and feel good about accomplishing things. I want to feel like my old self before all of this started.

Perhaps acceptance of things is good. Or maybe it’s giving up. I’m not really sure at this point.

But I tire of people dismissing the true effects of cancer. I have been told that surely I now see the “light at the end of the tunnel,” and everything can go back to normal. I wanted to scream when I heard this but stayed silent.

There will not be any going back to my former life. My body is changed permanently, and I may have effects of the treatment for at least a decade, probably longer. And I may never return to work. And to be perfectly honest, this cancer may kill me.

I just don’t know any more.

I guess I have come to that point where acceptance of this “new normal” is my only choice. What happens after this, I have no idea.


If you’re the praying sort, please pray for me. I have been struggling mentally and spiritually–and well, physically–lately. I could use the strength and prayers. And possibly a bit of fun if you can share a bit.

Radiation Treatment and Me

radiation-treatmentSo…radiation therapy.

There’s been a big question since the beginning of this latest cancer journey as to whether or not I could have radiation again. Also, there is the addition of the PTEN mutation to the whole equation, making things that much more complicated.

In 2004, I had radiation to my right breast after I had completed chemotherapy and a lumpectomy with sentinel node biopsy. As the biopsy of the lymph node was negative, the radiation only covered the breast and not the axillary lymph nodes in the armpit.

This current cancer is also on the right side. As it is inflammatory breast cancer, the standard radiation treatment would cover the entire right breast as well as the axillary lymph nodes and part of the neck. This treatment protocol would have been the case no matter the results of the lymph node biopsies during the bilateral mastectomy.

Having not had radiation to the armpit and neck areas in the past is a plus, but the problem will lie in radiating the right side of my chest again, especially as I no longer have breasts to “target” in the treatment. The main risks include rib fracture and tissue necrosis, as well as problems related to those organs that may receive radiation (lungs, liver, etc.).

And of course, “feel the burn” will be literal. Causing a reaction in the skin–i.e., burn–will be sought after. I have had plenty of sunburns in the past, but I think those may pale in comparison to what this upcoming radiation treatment will bring.

Scary so far?

The positive in my case is that there has been such a long time since my last radiation treatment. According to my radiation oncologist, there have been studies over the past ten years or so showing that the tissue can repair itself after radiation treatment, making a second treatment to the same area safer.

Regarding the PTEN mutation and radiation, there was apparently much discussion among the local radiation oncologists and my medical oncologist. Some patients with both the PTEN mutation and breast cancer are warned not to receive radiation treatment. As this mutation and its associated problems do not result in DNA breakage, my oncologists believe that radiation treatment will be fine in my case. They could not find any studies that led them to believe that Cowden Syndrome would be a contraindication when it comes to radiation treatment.

Basically, the consensus is that they can repair the damage caused by the treatment, but they cannot treat a recurrence. The risks associated with the cancer outweigh those of the treatment.

So radiation treatment will begin soon. I had my simulation appointment on Friday; this is where a CT scan is taken and marker tattoos–these are used to align the machine during treatment–are placed. (Yes, I now have one more tattoo to add to my collection of “dots,” making a total of three.) The oncologist will use the CT scans to begin formulating a treatment regimen.

As she went through the process, she decided that she would treat a much wider area of my chest than I expected. The treatment area will cover part of my left chest, my entire right side and part of my back, and part of my neck.

Scary now?

I will be having a pulmonary function test and bone density scan to provide a baseline before treatment begins. Also, due to the complexity of my case, the radiation oncologist may take a couple of weeks to research and further refine the treatment protocol.

Although I was able to slide through the surgery and treatment in 2004 with minimal long-term problems, this is obviously not the case with the current cancer. My body has already been changed permanently by the bilateral mastectomy, and now there will be lasting consequences from what lies ahead (radiation treatment, hysterectomy, and anti-estrogen therapy).

Scary therapy or deadly cancer?

I’m going with therapy and a hope for a cure.

 

 

 

 

High Anxiety

high-anxiety

I must admit that I have never watched High Anxiety although I have attempted to do so in the past. The humor and movie references were way, way above me at that point in my development.

Still, the title is very appropriate for me these days.

While in the surgical waiting room before my bilateral mastectomy in December, I was anxious about the procedure. I did not want to have the surgery and was uncertain about my life afterwards. As a result, I found myself sobbing and bent over the trash can in the waiting room while the older men and women who sat in chairs around me just stared at this hopeless wreck of a woman.

I have never been like this.

And today, I had a similar experience before my two appointments with my medical and radiation oncologists. Weak and ill, I yet again became sick before we even drove to the hospital.

I managed to make it through my appointments, though. I found out more about the staging and biopsy results today. The cancer is officially Stage 3B, with a small margin of cancer remaining in the muscle and two positive nodes. Both doctors reiterated the high possibility of a recurrence or future metastasis of this cancer.

Before the radiation oncologist treats me, she will be researching PTEN and any related risks involving this. There are additional problems in that she will be treating the same area that previously received radiation treatment in 2004. Right now, though, she believes that the risks of the cancer outweigh any risks of the treatment itself.

Honestly, I’m tired and frustrated at this point. Anxious too and feeling alone in all of this long, drawn-out process.

Being a “brave” cancer patient can be exhausting, to be honest. That’s the real truth of it all. I admit I don’t like the current plot of my life, but I’m hanging on to the hope that is stated by Craig Groeschel in his upcoming book, Divine Direction: 7 Decisions That Will Change Your Life:

“I am not a quitter. With the help of my God, I am a finisher.”

May things be better tomorrow, with a new outlook and a fresh hope so that I can be a finisher too.

Regaining Strength

regaining-strength

Having been through all of this cancer stuff twelve years ago, I honestly expected this time to be pretty much the same. Naive, I realize now.

In 2004, I was 31 years old when I found out that I had cancer. Still fairly young–I’ve known breast cancer survivors who have been diagnosed at a much younger age–I was able to bear the effects of the treatment and surgeries, still maintaining a somewhat normal life. Indeed, I took advantage of the amenities at our local YMCA and exercised regularly and even attended hour-long classes during my treatment.

Now? Things have changed. Dramatically.

The chemo drugs hit me a lot harder this time around. Some days my only cardio was simply hobbling to the bathroom with an unsteady hand braced against the wall as I slowly moved forward. During my off weeks, I gradually began stretching, cardio, and weight lifting. By the time I was ready for my next round of chemo, I was feeling pretty darned good. And then I would be back at square one once that chemotherapy began dripping into my veins.

After my bilateral mastectomy in December, I was not allowed to exercise or move my arms for at least the first couple of weeks. Once I did get the go-ahead from my surgeon, however, I was off and running, so to speak. She had given me a deadline of a month to get back full arm range of motion. If I was not able to make this happen by my next appointment, I would be forced into physical therapy.

By this time in my treatment, I was angry at my body for being so weak, and I was determined to rush the process of regaining strength and mobility. I returned to the videos that I had relied upon for my exercise routines before and during treatment. Grunting through the stretches and low impact cardio, I pushed through.

Bad, bad idea. My body rewarded me, but not in the way that I had hoped. I instead found myself wracked with pain and muscle spasms.

I had been focused on my hoped-for end point, full health and strength, along with a proclamation from the oncologists of NED (No Evidence of Disease). As Craig Groeschel says in his upcoming book, Divine Direction: 7 Decisions That Will Change Your Life,

“If you try to focus now on the last chapter of your story, you’ll likely find yourself too paralyzed to write the first page.”

Although I had a goal–regaining my strength and mobility within a month–along with a singular focus on the end of my treatment, I had effectively paralyzed myself into inaction by my refusal to accept this stage in my life fully. Despite a logical understanding that I do have cancer for a second time, I still don’t want to believe it at times. The hopeful end point of my treatment (NED) seems tenuous now, and I have often attempted to bulldoze my way to that unknown future in order to escape the current pain.

After a period of depression and a downright pity party following my initial attempts to exercise after my surgery, I’m trying to take things a bit slower now. I may not know if I will ever reach that final diagnosis of NED, but I can move forward a bit now, trusting my future to God. As Groeschel goes on to say,

“I like to say it this way: I will do today what I can do to enable me to do tomorrow what I can’t do today.”

Today I can try to raise my arms a bit more than the day before. I can do a bit of cleaning to increase the strength and range of motion in my upper body. And I can rest.

Time and patient effort right now are needed. As Ellie Arroway is told in the movie Contact, “Small moves, Ellie. Small moves.”