Triple-negative roundup

A friend of a friend was just diagnosed with triple-negative breast cancer.  She’s asked for information, and I know several of you are also survivors of triple-negative breast cancer.  What are your favorite resources?  What do you recommend?

I’ll throw out what I was sent on twitter today, by @ejwillingham:

Living Beyond Breast Cancer‘s monograph on understanding triple-negative breast cancer;
the Triple Negative Breast Cancer Foundation and its forums; and
the Breast Cancer Network of Strength (formerly y-me), which will match callers with other survivors for peer-to-peer support on a wide variety of topics.

What else do you recommend?

Locker-Room Phobia

(submitted by clergygirl) 

I’m not one to avoid going out if I don’t have make-up on.  I quite often throw on a coat over my PJ’s and slide in to some big boots to drive my daughter down to school.  I’m just waiting for the day that I, for some unforseen reason have to get out of my mint green mini-van at the school in front of professionally dressed parents in my old, well warn PJ’s with a pattern that resembles lucky charms. 

The day is coming.  And I am prepared.  Seriously. 

But here’s what I’m not prepared for.  Ever. 

It strikes a fear in me like no other.

Are you ready…..it’s THE LOCKER ROOM.  Yes, the locker room. 

I feel a bit like I’m back in 5th grade and you start to hit puberty and you realize you are changing, but aren’t sure changing is really ok, so you dread being naked in front of 20 other girls after gym class. 

It’s that kind of fear. 

Now, I’m not so fearful of the normal women’s locker room.  I don’t fear damaging anyone for life when they might see my scarred and nipple-less breasts, but I do worry about the shock factor.  Like, whao….I was not expecting that.  Because frankly, lets just be honest here.  Breasts without nipples is a bit scary.  

Even I was scared after my initial reconstruction.  It just looks, well, different.

But here’s what really gets me nervous.   The locker room at the water park in town where I take my kids, that’s what makes me nervous.  You see, my children are used to seeing my body.  But other children aren’t.  And there are no family changing areas there and no curtains to hide behind.  Just me, the locker room and young children all curious and wondering why I look so different.   I caught a teenage girl staring the other day.  And I’m quick.  Super quick.  You’ve not seen someone change from a bathing suit to a shirt as fast as I can.  The problem lies in how wet the shirt gets.

So the other day I came in to this locker room and started helping my kids get ready.  And there stood several women from my children’s school. 

Lovely.  Just lovely.

I am wrapped in a towel, I look horrible, dripping wet, and they are standing next to me chatting.  One of them says, “are you an Angling Mom?”  I look slowly at this woman and smile a nervous smile, as she proceeds to say “you drive a green mini-van.”  Yes, yes I say. 

I really want to melt in to the floor at this moment.

I can’t believe the predicament I’m in.  I have three children yelling and screaming at me to get their clothes.  And my kids, bless their hearts, don’t get it.  And Jeremy would get really angry if he thought I was being all self-conscious about my body in front of the girls.  So I’m draped in a towel in front of women that RECOGNIZE me.  Shoot.  What to do.  I did what any other laid back mother who recently went through reconstruction surgery for breast cancer would do.  I LEFT my children to fend for themselves and I found a bathroom stall to get dressed.  Thank goodness my 3-year-old didn’t run off. 

I just couldn’t bear to change right in front of these women who may/may not know I’ve had breast cancer. 

If I were being really truthful, this really is one of the hardest thing for me to deal with emotionally.  It sends me in to a pathetic emotional downer.  I dread it before we go and I dread it as we leave.   It takes me a day or two to recover. 

Until the next locker room trip.

But like everything else,  I will not let fear keep me from enjoying life.   I will conquer the locker room for the sake of my children’s water park adventure.  But man, am I so tempted to skip it. 

Can any other breast cancer survivors relate.  You’ll make me feel SO much better if you tell me you can.  Or better yet, overcame your locker room fear.

Aromasin

(by Susan; crossposted at Toddler Planet)

I am so, so tired.

Unbelievably tired.

Tired in my bones tired.

New mom, breastfeeding, up all night tired.

Dissertation-writing graduate student tired.

Struggling writer finishing a manuscript tired.

But without the baby, the dissertation, the manuscript.

…

Three weeks ago, my oncologist switched my hormone supressing cancer therapy from tamoxifen to aromasin, an aromitase inhibitor. Aromasin, like Arimidex, which you may have heard advertised on the radio or at the 3 day walk, works to prevent recurrence of hormone-positive breast cancer by blocking the production and circulation of estrogen. Aromasin is recommended for post-menopausal women, while tamoxifen is best for pre-menopausal women.

Like most steps of my cancer journey, I fall into the long tail of women who are neither or both, as I was pre-menopausal (and 34) when this all started, but, after 6 months of chemo, 3 years of tamoxifen, and the removal of my ovaries, I am now utterly and thoroughly post-menopausal (and 36). Which hormone suppressant should I take? Nobody knows. There are no studies.

There are no studies.

There are many, many women who have become menopausal through cancer treatment, including many of my IBC sisters, who don’t have any scientific guidance on which hormone suppressant to take. We don’t know whether tamoxifen, which ravages a woman’s hormonal production and causes all kinds of unfortunate side effects (I’m not going to get graphic; my dad reads this blog), or aromasin, which does the same and in addition strips women’s bones of their strength, causing 40 year olds to develop osteoporosis and all of us to be tested annually for early detection, causes untold aches and pains where none were before, and generally wreaks havoc, will work at all for us. It’s not been studied.

So, like the good girl that I’ve always been, I take my medicine, say my prayers, and hope that one or the other (or both) works, and my body can fight off recurrence for a few more years, until I’ve gotten some projects under my belt, published my book, written and published a follow up, raised my children, and checked off some more things on my “bucket list,” all the while knowing that the medication is only “probably” going to work for me, and my sisters in this pre/post menopausal gray zone.

Oh, and did I mention that it causes insomnia?

I have not slept more than two hours at a time, three to four hours a night, in almost three weeks.

But I’m a good girl, and I take my medicine … and pray.

Have you had this experience with aromasin or arimidex? What has helped?

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. 

Telling the kids

We need a bat signal or something. Mothers with cancer, alert!

I spoke last night with a new friend, a mom who has just been diagnosed with (early stage) cancer and has to tell her children today. She’s having surgery on Monday and doesn’t want them to worry, but does want them to understand. The kids are 3 and 6-ish. Between us, we have 20 perspectives of how to tell the kids, and dozens of links and ideas and reassurance.

Moms with cancer, could you please take a moment and post a link to your stories or something that helped you in talking to your children?

I told her about the site last night, and she may come looking today….

This is a chance to really help “that mom” who is out there looking for us.