Thursday, June 23, 2016

5067 News from my corner

Thursday, June 23, 2016

Ye shall know the truth, and the truth will make you mad.
-- Aldous Huxley --


Most people will interpret "mad" in the green quote above as "angry", but given the source, it's more likely "insane". 


When you think of Antarctica, and the research station at McMurdo, what do you "see"?  Probably a small cluster of connected space-lab-looking canisters, and a land covered in ice and snow, miles thick.  Right?  

Well, it's nothing like my mental image.  Something I read sent me off to look at pictures.  McMurdo Station looks like any small town in the US, and as for all that snow and ice, check out McMurdo Dry Valley.  It's like that all year, not just summer.

 Amazing.  So very different from what I imagined.


I've been among the missing lately as far as blogging goes, mainly because there's nothing much happening, and politics is disgusting (to use one candidate's favorite word).  Favorite joke right now - "Orange is the new Black."

I think things are going to heat up pretty soon, though.  I've been visiting the Jacqueline M. Wilentz Comprehensive Breast Center at the Monmouth Medical Center in Long Branch, NJ.  I'm impressed and happy with my impression so far.  It's the first in the region to be designated a Certified Quality Breast Center of Excellence, the highest recognition attainable from the National Quality Measures for Breast Centers and is also a recipient of the Women’s Choice Award as one of America’s best breast centers.

I had a diagnostic mammogram and ultrasound Thursday of last week, and an ultrasound-guided core needle biopsy last Tuesday. The lab results from the biopsy came back today, the radiologist called me this morning.  I have a 1.5 cm invasive ductal carcinoma in the lower outer/right quadrant of the right breast. I didn't ask for details as to grade and so on in the phone call.  It really doesn't matter right now, and I'll get all that info when I see a printout.  My lymph nodes seem to be fine, but we haven't checked them yet other than by ultrasound.

I'm very relaxed about this whole thing.  I don't have that feeling of doom about it, and neither does Daughter.  In fact, when I first felt the lump (about six or eight weeks ago, yeah, it took me four weeks to finally admit that I had to make an appointment with a doctor, I hate doctors that much, but I lucked out there, the PCP assigned by my insurance company, although Egyptian, is very nice and really talks to me without condescension).  Anyway, my first thought, and I'm serious about this, was, "Oh, wow, maybe I can spin this into a double mastectomy."

I have to talk to a surgeon next.  I chose a woman from India who has been at Monmouth for five years, has fellowships at Mount Sinai and Beth Israel.  Have to make an appointment with her.  My PCP recommended a male surgeon at Monmouth, but he's going on vacation on Monday and won't be back until August.  Actually, I'm a bit relieved.  I'd rather a female, and this woman was recommended by the radiologists (male and female) who did the biopsy.  So, we'll see.

[Flash - just got a call from Monmouth - tentative appointment with surgeon Friday 7/1, secretary is going to try to rearrange her schedule to get me in sooner, schedule MRI before that.]

My reasons for wanting double mastectomy (no reconstruction):
  1. My first bra, at age 12, was a B-cup, and they grew quickly.  They've been DD since my 30's.  For men and women alike they've been my defining characteristic all my life, ahead of any of my other skills, talents, or abilities.  
  2. Men of slight acquaintance walk up behind me, reach around, and grab them, so often that I have developed an automatic back-elbow-jab response.  They always look embarrassed and say, "I just wanted to know if they were real..."  Yes, they all say the same thing.  I don't want or need this.  I want people to see ME when they look at me.
  3. I am now 4'8.5" tall, with DD boobs.  I have a fragile back.  These things hang off the front and pull.  They're too heavy.  I walk around the house cupping them in my hands to lift the weight and center it more over my spine, and it feels so much better.  With them gone I'd almost feel like I could fly.  I need double, because one gone would unbalance me even more.
  4. Once you have a tumor in one breast, you have five times the chance of another in the other.  
  5. Face it - they have no use whatsoever once you're past childbearing age.  If I need something to make clothes hang right, a nice light padded bra would do just fine.

One of the technicians at the breast center warned me not to get my hopes up, because surgeons are highly reluctant to remove healthy tissue.  That's one reason I'm fine with switching from one of the male surgeons recommended by my PCP to a female.  I'm hoping she might be more understanding, (men get emotional about breasts), easier to convince, and able to convince my insurance --- but if the insurance refuses to pay for the other breast, I will.

So, further developments as they occur.

Please don't leave mushy comments.  I'm not a hugger, and really, I'm fine with this.  It's just news from my corner.


the queen said...

A friend with enormous breats who had a mastectomy and reconstruction opted for bs. "They're so pretty!" she gushed. And can't women have Brest surgery for back pain? Work up a back pain argument.

~~Silk said...

Queen, please explain "opted for bs". I'm not sure what that means.

As far as "pretty" goes, you have no idea how far from my consideration that is. I really truly don't understand why anyone would opt for reconstruction, unless it's to catch or keep a man you wouldn't trust to love you otherwise. But that's just me.

And yes, you can get a breast reduction for back problems, but insurance isn't going to pay for it. I'm hoping that I can convince the surgeon on the grounds of back pain and danger of recurrence, and that then she can come up with something to convince the insurance. (I'm half hoping the DNA test shows the BRCA1/2 mutation - but only half because then Daughter might have it.)

the queen said...

Size b. B cup.

~~Silk said...

My first bra, at age 12, was a B.

KJL said...

Another option is bilateral oncoplastic surgery - we've had several women with very large breasts opt for this. The breast and plastic surgeons work together removing the cancer, checking the sentinel node and then doing bilateral reductions. It's all covered by insurance and our patients got the size B breasts they wanted. They still require radiation to the affected breast in case any cancerous or precancerous cells remain, but it's only 3 and a half weeks (18 treatments) instead of 6 and a half weeks. Chances for cure of Stage IA, which looks like what you will have, are in the high 90 percent with modern treatment.

~~Silk said...

KJL - Thank you for your thoughts. What you describe is essentially a lumpectomy with some neatening up and balancing afterward, which will probably then require radiation.

The problem, though, is that 1.)I flat out (no pun intended) do not want a lumpectomy. I simply don't trust it enough. The benefits don't balance the risks. And 2.) I absolutely do not want radiation. No way, no how. Lumpectomy and radiation are not open to discussion (unless for some weird reason it turns out that I wouldn't survive a mastectomy). I do have my own reasons for all of that. Also, 3.) I'll be 72 next October. I really truly do not have any reason whatsoever to be concerned about appearance. (Never have, really.) Breasts do not define me.

KJL said...

Well, not exactly a lumpectomy - the most recent woman had 4 pounds removed from each side - dear lord...But managing breast cancer is a very personal decision and, fortunately, you can't make a wrong decision (as long as you don't decline treatment).

The outcomes are equivalent between mastectomy or lumpectomy with radiation so it really comes down to what makes you feel most confident. So, off to surgery :-). Wishing you a quick recovery!

KJL said...

BTW queen, insurance will pay for breast reduction for neck and back pain. Your provider and sometimes the plastic surgeon have to be willing to write a few letters, but I've done it several times and have never been rejected.

Any breast surgery for cancer is covered by a portion of the HIPAA act - women may choose lumpectomies, single or double mastectomies, immediate or delayed reconstruction - even years later - even for asymmetry after lumpectomy, custom bras with prostheses - all covered.

~~Silk said...

KJL - Thank you for your reasoned and intelligent information. If you've got more, I'll take it. Of course I will listen to the surgeon and consider carefully what she recommends, and I have changed my mind on other occasions, but in the end I suspect I will not want anything that involves radiation, and I see no reason to keep any part of these useless lumps of fat.

My Daughter is big on mind-body connection (so am I, but she's bigger) and she has wondered if it's my negative attitude toward my breasts that allowed the tumor to start. She may be right. My very first thought when I first felt the lump was, "Wow! I wonder if I can spin this into double mastectomy."

My late husband, the most intelligent man I've ever known, didn't want radiation either (but ended up with six weeks or it, plus fractionated radiosurgery) but he didn't have the option of brain-ectomy.


Daughter told me that losing them entirely will break my grandbaby's heart. "Huh?" Daughter doesn't even fill an A cup, and Nugget (5 years old) finds snuggling into Gramma's soft chest pillows very comforting. I suspect foam or feathers could easily take over that duty.

KJL said...

Again, you cannot make a "wrong decision." Double mastectomy is a BIG operation and technically lumpectomy is easier...but you have confounding issues. Huge breasts especially on a small woman are notorious for causing neck and back issues. Now that we know your kidney function is good, and your surgeon will guide you, proceed :-).

I know your daughter means well, but I always wince when a "negative attitude" is cited as the cause for cancer. Blaming the patient seems especially heartless to me. We are complex creatures and any number of factors may have combined to allow the first cell to go rogue and your immune system to miss it. Nonetheless, your first thought was how can I make a positive out of this experience - good for you!


rockygrace said...

Whoa, I'm just catching up here ... you seem to be handling this really well!

I always said that if the docs ever wanted to take my breasts, they could have 'em - I never used them anyway. :)

rockygrace said...

and now I'm catching up on the comments - first your daughter said your negative attitude caused the cancer, and now she says you've gotta keep the boobs because removing them will break your grandkid's heart?! Your daughter sounds like a piece of work.

~~Silk said...

Rocky, thanks for the giggle on the "they could have 'em".

I think you're all being just a little bit hard on Daughter. She wasn't blaming my attitude at all. In that area, she and I speak the same language, and I happen to agree with her, but in the way that she and I understand it - which may have no similarity to the way you understand it. The mind has enormous control over what goes on in the body. My mind started ignoring my breasts and wishing them away about four years ago. I do believe that has an influence.

The bit about Nugget was not a guilt trip, or saying that I had to keep them - it was a warning that we'll probably have to prepare Nugget at bit, and compensate until she gets used to the idea. Like if anyone had realized how I felt about my Gramma's bulk (see subsequent post), it would have been a good idea to prepare the child-me, too.