Confirmation

Appointment with Dr. A
When I got the good news about my 2% test result (see last blog post), I trumpeted it to the world, saying, "I'm not going to do chemo!" Cautious Jon said, "Well you haven't talked with your medical oncologist yet." True, I hadn't. But we did talk with him today, and even better than him saying, "Sure, that's your choice," he said, "No chemo for you!" Super great to have him say that so emphatically.

What gave him such confidence was that wonderful 2% number. There's another tool/study (SO many of them, and I'm grateful for every single one of them!) which looks at the tumor pathology and creates a PEPI score, which predicts the risk of breast cancer coming back. Dr. A said, "With this one, you don't want points." The cutoff to start accumulating points is anything above 2.7%, so since I have that lovely 2%, that gives me a grand total of zero points! Can't get better than that.

As is usual in our appointment with Dr. A, he threw a ton of info our way. In brief:

 - bone loss is a potential side effect of taking the anti-estrogen med, plus there are studies (more studies!) showing that since breast cancer tumor cells like to migrate to bones, treatments to forestall tumors there can significantly cut risks for cancer recurrence in the breast or in the bone or liver or kidney. Consequently, I'll be doing an IV treatment of Zometa every 6 months for the next 3 years. Plus he'll be checking my Vitamin D levels every time I go in - every 3 months. Obviously more doctor's appointments in my future! That's not even counting annual mammograms and MRIs.

 - there's also a blood tumor marker test he'll be doing. It's not yet "standard of care" but could give us a jump on diagnostics if some cancer decided to return. Quite honestly, I can't remember how often that will happen - perhaps it will be a blood test when I have an appointment with him every 3 months.

Patient Education Summit
A friend and I went to a Patient Education Summit for most of the day last Saturday, which was very good. There was a wide variety of speakers, from doctors to insurance reps to naturopaths to cancer survivors (I'm "supposed" to be calling myself that - but it feels a bit, I don't know, overly dramatic for my situation). I learned a lot, was sometimes laughing and sometimes teary, and time went by quickly. A few nuggets from that:

 - from a doctor - "...and there's the patients who consult Dr. Google..."

 - Suleika Jaouad, the keynote speaker, was powerful. She writes a column for the NY Times called, "Life, Interrupted" which she started while in a bone marrow transplant unit, undergoing some pretty drastic treatments.

 - a wife's response when her husband told her of his Stage 4 diagnosis - "You're in deep tapioca!"

- April 16th is National Health Care Decisions Day. Oh my. We really do have an "official day" for everything now, don't we?

Status Report
Overall I'm feeling very good. Still impatiently waiting for the final bruising and swelling to go down, but pretty much back to normal in every other respect.

Next week:
    Monday - MRI (not the icky needle one)
    Wednesday - meet with radiology team for "simulation" (get me set up for treatments)
    Thursday - Dr D, my surgeon, shows my reports and images to the tumor board to get input about those dratted spots that we still haven't gotten final consensus on
    Thursday - meet with Dr. D to see what the tumor board recommends

Grateful
It's a key word for me these days. Hearing some people's stories at the Summit - "I've had 2 major surgeries, 7 hospitalizations, 57 chemo infusions, 28 radiation treatments, 4 day surgeries, 7 procedures, 5 ER visits, 21 prescriptions and 4 specialists" (this from the woman who organized the conference) - confirms that though I've been experiencing "the big C," I've only dipped my little toe in that ocean.

Another example. A couple of the speakers at the Summit said that when they were diagnosed, some friends they thought would be supportive had backed away, while other people they hadn't felt as close to really stepped into the fray. I couldn't relate to that at all. Every single one of you have jumped into this "detour" with me in a big way. I'm overwhelmed with your love and care. And so grateful.

2% - A Wonderful Number

Just got the results of the test we were waiting for. And the number 2% means that I've decided not to have chemo. Big sigh of relief and lots of joy!

A numerical recap, if you want more details. Among the many test results we received about the biopsy, one was the fact that the tumor was 100% estrogen-receptor positive; in other words, it feeds on estrogen. Just one week after the biopsy, Dr. J (the surgeon who is out of our network) saw that result and said, "Let's start you on anti-estrogen meds now." That's not the norm, but it made a lot of sense and my medical oncologist said, "Sure. Go for it."

Another result was the the Oncotype DX test which is a fairly recent test that oncologists now use to help determine whether or not to do chemo. This is the test where I fell in the hazy middle ground. 17 and below is "no chemo for you!" and 31 and above is, "Yep, you gotta do it!" My number was 21 - just enough to say, "Well, it could be helpful - we don't know for sure." Stats are "13% chance of recurrence if you don't do chemo; 9% chance if you do." Your choice.

As we talked about those numbers with Dr. A, the medical oncologist, I confessed my indecision, and my preference for no chemo. Then I asked a "what if?" question. One other test was the "proliferation rate" (division rate) of the tumor cells. From the biopsy, 24% of the cells were dividing, which is a high rate. It was the worst number of all my results. But the cells were 100% receptive to estrogen, which I was cutting out of their diet, so what if that rate went down between the biopsy report and the pathology report after surgery? Would that be helpful information with which to make my decision? Dr. A agreed.

For the rate to change from 24% to 2% is more change than I even dreamed of. I'm realizing now that I hadn't ever put a number on it, but I think I was vaguely feeling that if it moved down into the teens, that would seem pretty positive. So a low single digit is amazing!!

Now the organizing part of my brain wants to kick into gear and get radiation scheduled so I can get other things planned. I've got Wild Canyon Games coming up in about a month, Memorial Day Weekend, a job in Boise on June 11, my brother's wedding on June 18 and of course Kenya in August. From our previous conversation with the radiologist, I think we'll be able to work that all out.

You can still keep praying. I do have an MRI coming up and then my surgeon is going to take all my records to a tumor board to see what they think about those "probably-benign-but-we-don't-know-for-sure spots." Hopefully those will be fading away too without their precious estrogen...

The Waiting Game

We met with the surgeon today and got the pathology report.  Nothing scary but nothing definitive either.

 - the chunk she took out was bigger than I thought it would be - about 4 x 4 x 3 cm.

 - besides the type of cancer that we knew I had from the biopsy (invasive or infiltrating ductal carcinoma) they also found DCIS - ductal carcinoma in situ - which means cancer inside a duct. Hmm - I'm still learning about all this. I think carcinomas can start inside ducts, and some break out but some don't, so there is debate as to whether to call them "pre-cancer" or "non-invasive," and about how aggressively to treat them. Will have to learn more.

 - because of the "new" cancer they found in the tumor, I'll go in for another MRI (NOT the needle biopsy one, thank goodness!!!!). But because of all the bruising I've experienced (not what she usually sees but our family has always bruised easily and colorfully), we need to wait a few weeks for that to get back to normal.

 - once we have the MRI results, the surgeon will take my case to a consulting group (comprised of oncologists, surgeons, radiologists, etc.) and see what that team recommends about next steps. Should we go after those "spots" that radiologists have different opinions about? Will more DCIS show up on the MRI and therefore should be taken out?

 - though I had asked, and therefore the surgeon's office had asked, for the pathologists to report on division (or proliferation) rate, that was not included in this report so we have to wait for that result. This is the number that we are wanting to go down, which we'll use to help us about the chemo decision.

 - I was going to see my oncologist next week but now need to wait until the following week, when more test results are back.

Overall, I'm feeling fine. I'm back on a (gentle) work schedule, and went to exercise class last night - just doing stretching, non-intensive exercises. Nothing bouncy, thank you! Heading back onto that "normal" path as much as possible.

The words "thank you" seem so small compared to the outpourings of love and concern and prayers and treats - but they are heartfelt. Thank YOU - you are a treasure.

Takin' it easy

I'm out on the deck, in the gentle sunshine and grateful for so many things. I'm off the hard meds, not experiencing much pain (even though my breast is one giant purple bruise - lovely!) and a little tired but not overly so.

Surgery day went pretty well. As we were walking out the door, the hospital called and said that my surgery time was moved up. Nice, but I was also secretly doubtful how much earlier it would really be. Checked in at 9am, was taken right back to the short stay area, and did all that basic prep work of hospital gown (sort of a breakaway paper thing, with places for warm or cooling packs), IV, answering questions, etc.

They wheel-chaired me down to radiology so they could put in the wire, blue dye and radioactive material. That radiologist also wanted to look at another "spot" to see if they should biopsy it during surgery but after lots of ultrasound time she decided it just wasn't definitive enough to warrant that.

Then off to mammography where they were to get images of exactly where the wire was (right through the tumor). This part was the longest wait and I think a bit of a blip since it seemed like all the other departments were trying to get me to surgery "earlier" but I sat and waited there for 20 minutes. Finally someone came to do the mammogram and then I waited some more.

By the time I got back to short stay, the surgeon had been there already, assuming I'd be there. The nurse gave me final prep, the anesthesiologist came, and the surgeon came back so we could actually talk. Then off to the OR, just a few minutes before what my original time had been. Of course I don't remember much of that room since after I scooted over to the operating table, they gave me the final knockout drugs.

Jon says the operation was pretty close to the expected 90 minutes. When I woke up, I was super dopey, but the nurses were very attentive and I got ice and water - very welcome indeed.  Some time there, some time back in short stay, and then home - hooray!

The rest of the evening was mostly dozing, a bit of dinner and dozing and sleeping. Slept on the couch with the cat and pretty much slept through the night. And now, as the title of the post says, I'm taking it easy.

Next step is waiting for the pathology report - either end of this week or early next week. Initial report was that the sentinel nodes are clear, so that's good news; means the cancer hasn't traveled anywhere else.

All for now! Thanks so much for standing with me in this :-)

home

The surgery went as expected. Judy's home now, still a bit dopey.

Thanks for your encouragement and prayers.

Jon

Say what..?!

So I’m in the thick of the ACES (American Copy Editors Society) conference on Thursday, having a great time learning stuff and meeting interesting people, when I get a phone call from the surgeon’s office. The message is that a radiologist at the hospital is raising questions about the (icky!) MRI biopsy which was done to check the other “spots” the original MRI showed. Essentially, that person is saying is they’re not 100% sure the biopsy needle hit the “spot.”  So maybe I want to do another test… Seriously!?!

My surgeon and the original radiologist feel confident with the results, and at this stage of the game, I don’t want to delay the surgery to remove the tumor any longer. This report rattled me, and I’m frustrated that they waited til the eleventh hour to pop up with this. My contact at the surgeon’s office confided that they were frustrated too.

So you can add to your list of prayers for me (already long I know!) that AFTER the surgery there will be a clear path as to what the followup should be, and that for now, I can let it go. [cue song lyrics here :-) ]