Sunday, July 25, 2010

Whattaya MEAN... it's not over YET??

Hahahaha... I thought I made a smooth transition into the my-life-after-cancer mode, but apparently the interim between cancer and cancer-free is filled with surprises. I graduated to a six month oncology visit schedule, and a one year MRI/mammo routine.  Lest I get too comfortable... 2 weeks before the scheduled M/M, I was drying my hair when I noticed a lump under my LEFT arm.  

What the hell is THAT?  It was Friday, and the radiology oncologist was out of town for a long weekend.  The nurse suggested I call the oncology surgeon, who gave me an appointment for early Tuesday morning, deducting a day or two of stress over what kind of growth was taking over the other side of my body.

"What the heck is THAT???" ... she mused when I lifted my arm.  I guess that's a more favorable response than, "Uh oh...."  She glommed my armpit with goo and did a thorough ultrasound exam. Although the lymph node was swollen, it definitely didn't look like cancer. But she wanted to make sure the upcoming mammogram and MRI took a closer look.

I'll spare the details of those exams, but had I not been there, I would have never believed it was possible to pull an armpit into a mammogram.  The second ultrasound confirmed the lymph node was normal, but it would be a few days before I learned the results of the mammogram and MRI. During the wait, I was pissed that we are so vulnerable to this beast, a little fearful, and a little confident that no matter what the outcome I could anticipate what treatment would be like.  Denial crept in, I'm sure.  The next day the oncologist's office called to say the report came back negative.  I received a letter from the radiologist to confirm that all was well.

A day later, I received a second letter from the radiologist saying I had evidence of a cyst that should be biopsied.  The oncologist had not yet received that news, and that's when the confusion started.  The next day I received a third letter, congratulating me because my test showed no signs of cancer!  OK.  WTF.

Apparently each separate test generated its own letter.  The mammo & ultrasound were clear, but the MRI found a smoodge in the left breast.  It was not a clear enough image for a surgical biopsy (just put me to SLEEP!!), so Dr. G ordered an MRI-guided needle biopsy.  UGH! I've heard horror stories about these, and the idea of a needle in my boob just freaks me out.  I was dreading it.

It was no big deal, really.  I didn't feel a thing; they must have used a pediatric needle for numbing.  The only weird part was that it sounded like she was using a dental drill to take the tissue samples.  The area was black & blue & lumpy for a couple of weeks, and a little tender for only a few days.  The results were in the next day - it was benign.  Ha. I should have known better than to get too comfortable.

In celebration of the clean report, I made an appointment with a plastic surgeon (Dr. S)  to talk about some cosmetic reshaping of the breasts to balance out the aftermath of all these surgeries and radiation, which has left me a bit lopsided.  I'm starting to limp from the extra weight on the left.  I didn't feel the need to go to the oncology plastic surgeon, and a local plastic surgeon with a long history of reconstructive procedures was recommended by friends.

The day after my 2-year cancer-versary, I was sitting in his office for a consult.  I didn't expect his response, which started this roller coaster ride which I hope is starting to settle. 
After telling him my history & recent events, he said he wouldn't touch my case cosmetically, and I had anyone ever talked to me about considering a double mastectomy? (He wasn't that blunt about it; that's the short version of an inspiring conversation. I have a high level of confidence in him.) He listed a few things in my history that really concerned him; they had been things that concerned me, but I was told it was OK.  I think his validation of these is what gives me a sense of relief that I'm not completely paranoid.
He referred me to another surgeon for a second opinion about a mastectomy, so I made an appt. for their soonest, 7/6.  What did I feel? hmmmm... a little fear that it will hurt, it will look gross for a while.  An odd sense of relief that someone is leaving no stone unturned.   I talked to Dave during his lunch break that day, and we are both OK with doing whatever needs to be done after the consult. But it sure looks weird to see that "double mastectomy" phrase in one of my posts.  
Back in the routine... calling all the docs to transfer records, making decisions, getting everything poked and prodded.  He also suggested I get that colonoscopy I've never had, and even an ultrasound on my ovaries just in case... it's good advice.  What concerns me is those who still think they ARE safe, invincible, and don't get anything checked till it's too late.  I guess it's time to resurrect this blog of the Reluctant Sisterhood, those of us intimately connected by this indiscriminate invader, doing our best to carry each other through to safer grounds.
A really eerie thing happened as soon as I turned on the computer that day - I received a long note (addressed to many of her friends) from a lady I met through, a network for cancer ... (what, Cancer-ese, cancer people? what???).  She had widespread breast cancer, double reconstruct, lymphedema, and now...
Her note was about how although she's finally had a clean bill of health, does the fear ever go away?  It was so timely. I wrote back and gave her the brief recap of what just happened.  A minute later she called me, and said every cell of her being was vibrating with the message that I need to do this.   Like a guardian angel swooping in unexpectedly to give me some perspective, we talked for about 1/2 hour about her experience, that of other friends that have gone through it. 
The next day another angel swooped in - she called for a nutrition consult because we are both post-BC, and we just clicked.  She invited me to a BC support group near my office, and these ladies have been an incredible resource of information on surgical options and the best folks for the job.  Almost everyone there has been to the same team as I have, with high praises.

Dave & I went to see the surgeon Dr. S recommended for a consult on 7/6, and long story short, he gave what we felt was an objective overview of the pros and cons of mastectomy and reconstruction vs reduction.  One subtle theme that I picked up is that there are PS (plastic surgeons) that prefer a cosmetic-based practice (and consequently a cash practice) and others that prefer an oncology/reconstruction based practice (despite the burden of insurance companies).  This is not good or bad; every medical practice, including chiros, face decisions about cash vs. insurance.
Which leads me to wonder... Did the PS that referred me there have hesitation about taking my case because he is moving towards a cosmetic-based practice, and does not stay connected with the oncology network he worked with in the past?  Would Dr. Hackert, who primarily does oncology-based surgery, have a different point of view?  She is the PS we went to see initially (2008) when I didn't know where any of this was going.  
Fortunately I'm not in a rush to do anything, so I have time to interview.  I met with Dr. Hackert this past week, and went over the details of her doing a reduction.  In the event that a mastectomy is the final decision, there is a process called DIEP that uses tummy fat instead of implants to create a new breast.  Most women who are familiar with this process have referred me to a doctor in SF, and that is the same doctor that Dr. Hackert recommends.

According to Dr. Hackert, the person who will have the most informed view on my risk of recurrence is the oncologist (chemo doc).  So that is my next stop.  There is so much to weigh out in making this decision. I won't beat this dead horse, but... I didn't have any risk factors to begin with.  
Whatever I need to do, I'm not freaking out about anything.  2 years ago I probably would have, but I've seen & done enough to know about successful surgeries (and you know who you are!) & am thriving wonderfully, so it's just another blip on the radar.  At the time I had a feeling I was a candidate for prophylactic mastectomy, now I see where I can glean more information.  I am so fortunate that the right people appear when I need them. Since there's no immediate emergency I will wait till at least November-ish before doing anything.  

What do YOU think about all this??? What wisdom can you share from your experience?


ChemoBabe said...

the benefit of contralateral prophylactic mastectomies have to be weighed with the real cost. things that need to be considered: genetics, age, & disease type. you don't have the genes and i honestly don't know if you are under the age cut-off for when they recommend it (i think it's 50?). there is also reason to do it if you have HER2+/ER & PR- or triple negative BC since the tumors fuel cannot be stopped with drugs like tamoxifen.

if you got cancer in your second breast it would be a NEW cancer, not a recurrence. a recurrence would take place in your liver or some other organ more likely than in your second breast.

i think women are often swayed by the symmetry and cosmetic issues. men, on the other hand, don't seem to be getting prophylactic testicular removal. remember it is an amputation you are talking about, even if you get DIEP. it is painful and you lose an erogenous zone.

ultimately, you have to be comfortable with your choice when you weigh all of these things out. but be sure there is a sound reason for it. cuz it really hurts. xoxo

LaurieA (@Turban_Diva) said...

Yup, whatever it is won't be fun. I'm over 50, the first tumor was triple positive, did my year of herceptin. The first PS said when cancer appears in the second breast, it's often at the mirror image of where it was in the first one. That spooked me, since the MRI found a spot there. He also said if he were at risk he would not hesitate to lop off the jewels; not his exact phrase, but noble intent nonetheless. I'll call the oncologist this week & schedule the next consult. Thanks for your input! xoxoxo

Kimberly said...

The most important thing is that you are here with us until we are very old, crotchety ladies. I know you will make the best decision with the facts at hand.
I do thank ChemoBabe for tellin' it like it is. I could not even begin to use my right arm for simple tasks like cutting veggies at many points during the mastectomy/reconstruction process (which began June 2 and only ended April 22 of this year). The pain (white, hot fire as the severed nerves scream their disapproval) was so intense that many days the only relief was to lie still. Any movement at all would send a searing jolt of pain through the construction zone that used to be my right breast.
So, I know you'll choose wisely, but be realistic about how much you will be able to work/drive/keep house. I am very thankful I did not have to go to work during that time and we had the resources to hire a weekly in-home chef AND I have the best friends and family on the planet (OK, maybe you have great ones too, but mine ROCKED!)
Big love and gentle hugs,

LaurieA (@Turban_Diva) said...

I had a bilateral reduction in 1978, and although I was sore, the recovery time was relatively quick (about 3 weeks?). I remember a friend who had implants a week later. We alternated care, depending who was most able at any given time. We commiserated the present and celebrated the future. For a while neither of us could straighten up, hobbling around, carrying one plate or cup at a time. Dr. H said the recovery time (i.e. moving enough to gently carry on daily stuff) for reduction is about 3 weeks. For DIEP, it's more like 3 months. And yes, I do have the best family & friends on my planet! Including some I've yet to meet in person. Lots of love to you (and one of those press-the-shoulders-together-and-avoid-the-boobs hugs),