Truncal Lymphedema

Do any of you ladies suffer from truncal lymphedema?  It frequently occurs after reconstruction or lung surgery.  Symptoms can range from very minor swelling or discomfort to severe pain and swelling that may encompass up to the entire chest, back and shoulders. 

I have a bit of truncal lymphedema in my right underarm.  Thankfully, it is very mild.  For about a year after my reconstruction I felt like my underarm was bulgy and very uncommfortable.  When I took off my bra at the end of the day I felt like I was still wearing it all evening.  Yet when my oncologist compared my underarms she said she couldn’t see any swelling.  Huh.  That just means that even the most minute edema is painful and uncomfortable.

Unfortunately, my mom has not been so lucky.  She is suffering from fairly severe truncal lymphedema.  At first it was just the underarms like mine.  Over the last year or more, however, it has spread across her unreconstructed chest wall, around her ribcage and is beginning to spread across her back.  According to her, it’s so bad as to look like her old breasts have relocated to her sides under her arms.  Great.  This is what truncal lymphedema looks like.

She routinely does self massage and physical therapy with a lymphedema masseuse.  She has to or she looks like she never had her mastectomy.  The trouble she’s recently been having is that the lymph build up across her chest has stretched her skin much like expanders do prior to receiving breast implants.  Again, yeah!

My mom recently (this morning) consulted with a plastic surgeon about removing all the extra skin.  Her appointment was something less than satisfactory. 

She was told that while he could remove the skin the swelling may just return and stretch it out all over again.  Ok.  We both kind of figured that.  But the surgeon also told her that it was not lymphedema.  What is it, then?  Excess fat. 

Yes.  You heard me right.  Excess. Fat.

Forget that two oncologists, a general practitioner and a lymphedema physical therapist all agree it is truncal lymphedema.  Disregard obvious and predictable positive response to manual lymph drainage.  Discount completely the possibility that a patient who has undergone chemotherapy, surgery and radiation just might know her body a bit more than a plastic surgeon who is looking at it for the very first time; call it instead, excess fat. 

Needless to say, my mother will not be seeing that plastic surgeon again. 

I found that once I stopped wearing a bra entirely my underarm issues went away.  But it took a while.  I had actually forgotten I had had the problem until a few weeks ago when I attended an all-day photography lecture.  I wore a tight elastic cami under a peasant blouse.  It had a built in shelf bra.  By noon I found myself pulling uncomfortably on the underarm of my peasant blouse.  At the mid-afternoon break my right fingers were puffy and the cami was cutting into my underarm like a tourniquet.  I rushed to my car at the conclusion of the lecture and squirmed out of the cami immediately.  It took nearly 4 days before my underarm felt normal again. 

I had to shield my eyes from the blinding glare of the lightbulb over my head. 

I know that the most common treatment of lympedema is compression.  Compression sleeves, compression camisoles, etc.  I can’t help but wonder, though, if wearing nothing in conjunction with the lymphatic massage might be a better solution for my mother. 

I don’t mean to put this out there as a tried-and-true solution by any means.  I am hoping to access the great knowledge of the internet.  Please let me know what your experience has been.  What has worked for you.  Do you do massage?  How does it work for you? 

For those looking into Manual Lymphatic Drainage Massage there is a video on YouTube. 

I love being right! by Stella

Pardon me while I gloat… I do so love to be right.

I’ve been telling all my Inflammatory Breast Cancer (IBC) friends and myself that the current survival statistics don’t apply to us (those diagnosed since 2001). Why? Well because back in the day the doctors used to treat IBC just like every other breast cancer out there instead of the nasty variety it really is. Typical treatment used to be diagnosis, mastectomy, chemotherapy and radiation. All of this followed relatively quickly by recurrence. Lovely.

According to the National Cancer Institute, women diagnosed with IBC between 1998-2001had a 5-year relative survival rate of 40% (it used to be 25%!) compared to roughly 87% for other breast cancers. But that was before neoadjuvant chemotherapy. Neoadjuvant is chemo given before surgery. This type of treatment makes all the difference in the world to an IBC patient!

Inflammatory breast cancer’s symptoms, which are listed below, cause the breast to grow really large, really quickly. In my own experience my affected breast grew to near double the size of the other (which was no small size to begin with) within about 2 months time. Also, it’s quite the non-specific cancer cell – more of a general inflammation not an actual tumor. All this makes it very difficult, if not impossible, to get clean borders during a mastectomy. So the nasty little cells would come back to visit quickly and were not please about being uncerimoniously evicted in the first place.

Here are general symptoms of IBC:

• A breast that appears discolored (red, purple, pink or bruised);
• A tender, firm and enlarged breast (sometimes overnight);
• A warm feeling in the breast (or may feel hot/warm to the touch);
• Persistent itching of the breast (not relieved with cream or salve);
• Shooting or stabbing pain;
• Ridged or dimpled skin texture, similar to an orange peel;
• Thickened areas of breast tissue;
• Enlarged lymph nodes under the arm, above/below the collarbone;
• Flattening or retraction of the nipple;
• Swollen or crusted skin on the nipple;
• Change in color of the skin around the nipple (areola)

If you want a great visual go to Lemonland.

Good thing for us IBC patients that neoadjuvant treatment is the new and improved way of doing business because it has increased our 5 year survival rate. This is where me being right comes in. According to the Mayo Clinic neoadjuvant therapy combined with surgery, radiation and more chemotherapy has increased IBC survival to 50% at the five year mark. Best of all, nearly 1/3 are alive 20 years after diagnosis!!! Plus, general breast cancer mortality has dropped 2% a year since 1990.

We are making strides, folks!!! Large strides! I intend to be here twenty years from now, beating the internet-at-large about the head and neck until each and every one out there knows about Inflammatory Breast Cancer and why it’s so insidious. Or… until it’s completely wiped out - which ever comes first!

Cross-posted to I can’t complain any more than usual

My cross to bear (by Stella)

Dr. Wendy Harpham of On Healthy Survivorship poses a great question to cancer survivors last week.  She wants to know which stage of cancer was the most challenging?  Diagnosis?  Beginning treatment?  Ending treatment?  Some time in the middle? 

For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning.  I know what she means.  For me, it seemed an exceptionally long time.  I was diagnosed on December 22, 2005 – the Thursday just before Christmas.  Most every healthcare professional was heading out of town.  Certainly no one wanted to take on a new patient over the holidays.  Consequently, I didn’t meet with my new Oncologist until January 3, 2006 and began chemo the next day. 

Those 13 days were beyond horrible.  There was a cancer inside me thriving at my expense.  It seemed to grow bigger every day!  I could feel it.  I swear, I could hear it whisper dark promises of an early death and motherless children.

What bittersweet Holidays that year.  Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year’s.  Why ruin everyone’s Christmas?  The end result, however, was a great burden on our hearts that we couldn’t share with our friends and family.  Each seasonal tradition was painful beyond belief.  Who would search with loving dedication for just the right gift from Santa?  Who would listen to their babbling, aimless words and sift from them their heart’s desire?  Would I ever read The Night Before Christmas to my little boys again?  Would I ever see their eyes alight with the wonder that is Christmas morning ever again? 

The day I began chemotherapy was the. best. day. of the next 10 months.  No more being hostage to fate!  No more victim!  At last I was fighting back! 

Still, I don’t think that was the most trying time for me…  My toughest day was the day I truly started losing my hair and made the decision to shave the rest off.  Until that day I had not really felt ill despite my first round of chemo.  Until that day cancer had seemed vague and ephemeral; death had been theoretical. 

Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp.  Initially, it was funny.  It’s really the strangest thing.  It doesn’t fall out all over the place.  I didn’t wake up with a scalp on my pillow.  All the hairs still look firmly attached but they’re not.  It’s like they’re all held on with Post-It glue.  One little tug and it comes away in your fingers without so much as a “pip” to indicate the separation.  It’s kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way.  A couple of mornings later and it’s not so funny anymore.  I won’t bore you with the details again. 

Losing my hair took me out of the closet.  I became a walking Poster Girl for chemotherapy.  Every time I looked in the mirror I was confronted with my mortality.  The baldness literally stripped me bare.  I couldn’t walk through the store without drawing stares.  My son would beg me to take off my hat to show his friends my bald head. 

With my hair went my vanity, my anonimity and my delusion that I would live forever.  Looking back I feel very, very blessed.

 Cross-posted to I Can’t Complain Any More Than Usual.

Benefit or Burden? by Stella

I love October.  Suddenly the bright spotlight of the media is shown on stories that normally don’t rate for their lack of warm fuzziness.

Take the Welsh’s from Ohio, for instance…  Both wife and husband are in their 60s and are undergoing Breast Cancer treatment.  Both. Of. Them.

This is a subject near and dear to my heart as my boys have a significantly increased risk of developing breast cancer because I and my mother both carry the BRCA2 genetic mutation.  By significantly, I mean about 80 times that of other men!!!  This equates to about a 1 in 14 lifetime chance of breast cancer.  BRCA2 also increases the risk of other cancers: prostate, pancreatic and stomach cancers as well as melanoma.  Did they hit the genetic jackpot or what!? The BRCA2 gene DOUBLES a man’s chances of developing prostate cancer and melanoma!  My boys have a 1 in 3 chance of prostate cancer before they turn 65!  All of these cancers will rear their ugly heads earlier than typical in a BRCA2 man.

I have long been an advocate of Knowledge Is Power!  It’s only when we hide medical histories and facts in the dark because of embarrassment or fear that these awful diseases get the upper hand.  That being said, knowing my boys could be victims of genetic Russian Roulette, I have a decision to make.  Should I get them genetically tested?

My quandary is this:  genetic testing would arm all of us with the power of knowledge.  We could gird our sons against cancer with more frequent screenings at much younger ages.  Even enroll them in test programs aimed at prevention.  However, by equipping ourselves with this information we also make the results available to insurance companies.  If I test the boys as children in order to afford them the best possible chance at survival, do I label them with a giant red flag that will prevent them from ever getting health insurance?  Will it cause them employment issues in the future?

It’s such a tight rope to walk; future benefit or burden?  What would you do?

Cross posted to I Can’t Complain Any More Than Usual

Well, that was disconcerting…

I just finished watching an episode of Mystery Diagnosis. Not my usual TV fare but this one was about Inflammatory Breast Cancer, or as they called it: “The Breasts That Changed Color.”

The show told the story of Amanda Nixon who at 27 years young found her breast hardening and changing colors shortly after breast reduction surgery. This is a new twist on the typical IBC tale. The vast majority of IBC patients are either pregnant or nursing when misdiagnosed with mastitis.
Four years later Amanda is cancer-free and very active in the fight against IBC. She has beaten the odds… so far.

I’ve never really heard hard statistics on the IBC mortality rate. I just knew it was very high. Well, tonight I heard the official stats. A mere 40% of IBC victims are alive 5 years after diagnosis. Only 30% by 10 years. !!!!!!!!!!!!!!!!!!!

Here are some more numbers for you. One in eight women will be diagnosed with breast cancer in their lifetime. Of those women, one in ten will be under age 40. Cancer in younger women is typically more aggressive than other cancers.

Although those numbers are frightening, as an IBC survivor I have them embedded in my psyche. What I found disconcerting is that there is not standardized triage for breast cancer patients.

My oncologist was all over the IBC diagnosis. Even when I was in denial. I foolishly decided I didn’t have IBC because there was no clinical proof. Like I can just decide that something is or isn’t so and have the world fall into line. It’s laughable, really. Or maybe just naive.

Amanda Nixon’s doctor had no idea that the eggplant colored breast he was looking at was IBC. Don’t they have a checklist or something???? I mean, really. Anyone with internet access can Google “breast discoloration” and find literally hundreds of thousands of sights referencing Inflammatory Breast Cancer!

My own mother was sent to a surgeon for a lumpectomy but NEVER REFERRED TO AN ONCOLOGIST. At least not until I badgered her and she badgered the surgeon and she finally fired him for dragging his feet on the referral. Gee, it turns out she is BRCA 2 positive just. like. me. Seeing an oncologist changed her entire course of treatment.

WHY isn’t every woman diagnosed with Breast Cancer referred to an oncologist – even if it’s just for an evaluation?

WHY isn’t there an intake “symptom checklist” for Breast Cancer patients that can be fed into a database or something?

WHY, in the age of the internet, is there such a wide range of knowledge, awareness and approach to Inflammatory Breast Cancer? For cripes sake, some doctors are still doing surgery first before chemo!!!!

And why are some of us blessed enough to be here three, four, even ten years later when others don’t last out the year?

Cross posted to I Can’t Complain Any More Than Usual.