Pathology Report, Part I-B (Message 6 of 21)

17 Mar 2011
Hi,

Another week... where does the time go? ; ) I've had a couple of long walks in the nice weather at Ridley Creek. I am reading Lance Armstrong's book "It's Not About the Bike" and learning lots of interesting stuff. I didn't know that there are different chemo cocktails and that (for example) one greatly reduces lung capacity for life. The alternative cocktail makes you unimaginably sick, but that's temporary and when it's done, you've still got your lungs...

Today's visit with the surgeon continued along familiar lines.... the news was just a leeeetle bit "off" what I expected to hear... not terrible (I am SOO lucky!), but not as good as I was thinking it could be. This time though, I could see the humor in it... as if the Universe, or God(s), or whatever couldn't resist this elbow to the ribs and snickering.

Remember that I said the tumor had spread just a bit into one of the sentinel nodes. It was not enough to exclude me from the gene mapping assay, but it really, technically is NOT node negative. How could it be, right? Right. Therefore, technically, my cancer was not Stage 1 as we first thought. Until not long ago, this was considered Stage 2 cancer. 

Nowadays though, there is a special Stage 1-B just for cases like mine that are technically not node negative, but have such a very tiny amount of tumor in one node, that it is just just just *barely* node positive. Node positive cancer cannot be Stage 1, but it really isn't as bad as Stage 2, therefore it get's to be Stage 1-B.  ("Why not 1-A," you ask?  Good question! It's on my list for the next appointment!)

So, I can't help but think the joke's on me... I always *have* to record every second and every tenth of a mile of every workout to be sure I'm not fudging anything, and I am regularly teased about it. ("We did, Diane? We rode 29.6 miles? Not 30? It really felt like 30....")  

Ok, I do feel the need here to disclose the fact that the tumor was not 1.3cm but was actually 1.6cm... in case those 3mm mean anything to anybody.  But, I get it already. It really just doesn't make any difference at all what you call it, does it? It is what it is and we'll treat it the way it needs to be treated.

So, next steps:

1. I have no restrictions on exercise at this point, EXCEPT I can't get in a pool for a whole nother week. GRRR!! At today's appointment she removed a bunch of fluid from under the arm where the lymph nodes were taken out and instantly relieved some pretty severe pain I was having. (Yesterday was the worst day for pain by far since surgery, and that just didn't seem right to me!). She said it could happen again so no swimming while there is a chance she'll have to stick another needle in there. Infection and all of that....

2. I will meet with my radiation oncologist, Dr. Carella in Newtown Square next Thursday to discuss treatment. My surgeon recommends beginning radiation the day after Boston. She sees no reason to start it a few days before Boston (her earliest recommendation based on my healing pace at this point). I might as well go to Boston, give my skin an extra three or four days to heal, and then start it when I get back. 

3. My Oncotype DX assay from CA won't be ready for almost two more weeks, so I will meet with my Medical Oncologist, Dr. John Devlin, on April 1st (cool!) to discuss the results of that and whether I need chemo. If I do, that will set back radiation because chemo should come first. And if that's the case, Boston may not be a run for me after all. If I need chemo I don't want to put it off. But we will just have to wait and see about that.

Dr. Barrio said about the Caesar Rodney half-marathon, "why not?" About the Columbia (MD) olympic distance triathlon in May, she said, "I don't think so," but we'll see... it could happen, if I can find a shirt to wear that the sun can't penetrate... maybe I'll make something out of wet suit fabric... Those & Boston are all I am signed up for so far this year.

I'm back at work tomorrow! Have a great weekend and enjoy the lovely weather!

Much love to all,

Diane 

Pathology Report, Part I (Message 5 of 21)

11 Mar 2011
Happy Friday! (again).  Time flies, eh? (No.)  

I am recovering nicely from surgery. I have very little pain, but don't ask me to describe it on a scale of one-to-ten. I am nearly drug free at this point. The PT exercises are easy and much like the upper body stretches you do at the end of spin class. I have almost a full range of motion again and the subconscious desire to "protect" the right side from "unnecessary movement" has almost disappeared. That's the good news.

The lymph node pathology report came back yesterday afternoon. Four lymph nodes were identified as sentinel, meaning that anything traveling the path from my tumor to the rest of my body would pass through these nodes first. No cancer in these nodes would mean the cancer was isolated to my right breast only, so these nodes were removed to examine. (Actually, a fifth, tiny node was also removed because it was stuck to one of the four.) In one of those nodes was a tiny amount (a few millimeters) of tumor, my doctor said. 

This is where it gets confusing for me because we had one course of treatment to follow if I were node negative, and another to follow if I were node positive. Dr. Barrio says that the amount of tumor in the one node is so small that this is still considered a node negative result. However, we will be doing the long course (6 week) of full-breast radiation treatment instead of the localized, one-week treatment option for node negative patients. That works for me. I certainly don't want to skimp if there is a chance we need to to more. And, we were not going to engage an oncologist to discuss chemo options unless I were node positive, but now I will see an oncologist. I'm sure you can see how my over-thinking brain would short circuit over this.

So, whether or not I receive chemotherapy as well as radiation therapy is still to be determined. Because my result was technically "node negative," the tumor still gets the trip to Redwood City for gene mapping. That test is only for invasive cancer that is ER+ and node negative. Here's a video that explains it. It includes such educational phrases as "...gene specific florescent dye-labeled bio-probes." But don't worry; most of it is in English!

The info from this assay will be extremely useful for the oncologist to determine if chemotherapy would have any impact on my chances for recurrence.  (Only 4 out of 100 women receiving chemo  with early stage invasive breast cancer actually have recurrence rates that are better than women who don't receive chemo!)

Next up: 

1) Surgery follow-up appointment with Dr. Barrio next Thursday at noon.

2) Meeting with oncologist when results come back from CA (about 10 days). 

3) Radiation therapy begins when my skin is completely healed from the surgery -- about four weeks. With skin as painfully fair as mine (nearly transparent!), she wants to be sure we start out on the healthiest possible foot. Six weeks of sunburn will be a new record for me.

As usual I have you all to thank for the distractions and perspective that keep me on a positive keel. I was really counting on getting some peace of mind from that report, and  I about crumpled when that didn't happen.   


More than just empathy and sympathy, you guys came through with actual useful things to consider and concrete reminders of reasons to feel positive again. And with stories and such that make me laugh. Good, good stuff. Saying "thanks" is so inadequate. 

Love,

Diane

It's a good thing surgery is day after tomorrow, cause I'm about out of wine (Message 4 of 21)

7 Mar 2011
Hello,

Today was very busy with pre-op appointments, some shopping and getting stuff ready around here for me to be lazy(er) for a few days. I managed to get an hour at the Y this evening too.

One of the appointments was with my surgeon, Dr. Barrio, who gave me some more information about the pathology report from the biopsy. I'm glad I didn't know there was more info coming from that! It was all positive information about the type of tumor. 

Because of recent research (published in JAMA ... scroll down that page, click on an abstract and geek out on the numbers!), they are changing their policy about taking lymph nodes and I get to be among the first recipients of this less invasive procedure, since the new policy doesn't officially go into effect for two weeks. Basically, it just means recovery time from the surgery will be less and the "morbidity" that results very minor. (This new policy is already being used at Sloan Kettering and the Mayo Clinic.)

My tumor is going to be tested more than high school students.  It gets to go to California to undergo the Oncotype DX gene expression profile. This test predicts the likelihood of chemotherapy being a good option for my particular disease. Dr. Barrio was confident enough that I will not need chemotherapy to actually *say* that, but this should be done anyway, to be sure. At any rate, radiation will start almost right away. There are two options for that, but I won't go into it all here. Hit me up for more info if you really want to know.

Tomorrow I will have my arm measured for a clinical study about lymphedima that I will participate in, and get the last two pre-op items checked off the list, finish the shopping and pack. Surgery is scheduled for 10am Wednesday and expected to last 90 minutes. I will be released Thursday morning after breakfast and a conversation with the occupational therapist. Recovery time is "1-2 weeks," but we'll see about that.

Thanks again for all of the phone calls, text messages, great vibes, hugs & just hanging out with me. This nightmare would have been so much worse without you to talk to.

Love,

Diane

TGI Friday -- Except in Doctorland! (Message 3 of 21)

4 Mar 2011
Hi there,

Not going to leave you hanging through a long story:  My MRI results are good!

Fridays are never good days for medical tests because you have to wait through the weekend for the results. I had to do that last weekend so *this* week I had the test yesterday. Newsflash: Really, A medical test on Thursday at 6pm might as well be Friday. I was supposed to get a call with results this morning but they didn't come. At noon I called the office to learn that on Fridays they close at noon. 

Oh, the agony! I made more calls. 

My advocate, who is also off today, had someone covering her (whom I met at the time of my biopsy), and she heard of my two-thousand phone calls and stepped in to call me back. Bottom line: There are no other issues in either breast, so the plan for surgery on Wednesday is not going to change. She said the doctor will call me (from a conference in Texas) later today.

I think my blood pressure and Charlie-Sheen-Index have just dropped by half.

Thanks for all the good vibes, phone calls & messages. So good to have you to talk to.

Diane

Quick Update (Message 2 of 21)

2 Mar 2011
Hi,

Today I was able to move my surgery up to next Wednesday (3/9). Dr. Frazier's partner Dr. Andrea Barrio will be doing it. (Dr. 'Hood en español, yes?) Sooo happy! The sooner this is done the better!

There is one other bit of exciting news.  Eben , who has been struggling in (read: flunking) Biology announced to me last night, "Mom, I actually *paid attention* in biology ..." and then he proceded to tell me something he learned about cell growth. I won't say it has made all of this worthwhile, but I thought I'd share anyway.

Have a great evening.

Thank You! (Message 1 of 21)

Tuesday 1 Mar 2011 

Hello!

I can't tell you how much I appreciate having so many wonderful friends who are concerned and would like to know what is happening with me and what they can do to help. I am blessed with an incredibly intelligent, insightful, experienced and level-headed group of friends. I really don't know what I would do without you.

I want to have a way to update you without the battery on my phone annoyingly crapping out in mid-sentence, and I especially want to avoid telling you the same info twice when you call to ask me something! I am thinking an occasional email message (as impersonal as it feels to me) will help fill you in so that the next time we talk I will remember what you already know and we can go from there, and possibly even have time to talk about something more interesting, too. 

I met with my surgeon today. Dr. Thomas Frazier is the chief surgeon and medical director of the Comprehensive Breast Center in Bryn Mawr. He he is easy to talk to, curious, very animatedly talks about his research, and is someone with whom I feel good asking questions. We went over everything that will be happening next and how it all works. It's really very interesting stuff. Here's what we went over today:

The diagnosis:  Stage 1 well-differentiated invasive ductal carcinoma.  The tumor is 1.3 cm and this is considered a very early catch.

What's next:  

Thursday March 3rd - Bilateral MRI to scan for any other tumors in either breast that may have been too small to be detected so far. If anything is discovered, an ultrasound will be ordered to confirm or rule out the existence of anything. If the ultrasound confirms something, a biopsy will be ordered.

Monday, March 7th - Various pre-op appointments

Tuesday, March 15 - Surgery (unless I can get the date moved up! Working on that...). If all goes well with the MRI, we are expecting to do a lumpectomy and the removal of the sentinel lymph node to look for any evidence of spreading outside the breast.

Recovery time is expected to be about one week. I'm not sure when the radiation treatment begins.

I can't tell you how it feels to have so much support from so many wonderful people. Almost all of you know each other, so I'm just saying, if you are ever in need, you will not be alone! Thanks for being there and offering so much. 

Diane

Short note of Explanation . . .

3 Feb 2012

I am about 3.5 weeks away from the one-year anniversary of being diagnosed with breast cancer. 2011 was a rock 'n roll year for me, to say the least!

My amazing friends and family were there for me from the very beginning and never left me to struggle with anything on my own.   And so, I learned early on that my phone battery was no match for the volume of calls and text messages, and it was rather exhausting to repeat the same story over and over. I finally decided I needed to start a distribution list and send emails regularly to keep everyone up to date so that when we did speak on the phone or in person, I had some idea of what they already knew.

Recently, a colleague and friend told me her daughter-in-law had just been diagnosed. I know she'll be fine, but I am so sad that she has to go through the 6-8 months of he** I went through. Really stinks. My friend was asking me some questions that I found myself digging through my emailed messages to find the answers to. Talking to another friend about it, she suggested I post those 21 messages that I sent over a six month period here on my old, defunct blog, unused since Ironman 2010.

So, here they are in chronological order and hopefully searchable. I hope they help someone in some way. If you read something that sparks a question, please contact me and I will tell you more.

All the best,
Diane