Next steps

First, a little more explanation as to why the negative result for the BRCA gene mutation is such good news. If you test positive, the recommended next steps are a double mastectomy, removal of ovaries, and yearly screenings thereafter for pancreatic cancer. You do all that because the percentages are so high for recurrence of breast cancer, and onset of ovarian or pancreatic cancer. SO grateful that those are not part of my journey.

We met with the medical oncologist (Dr. A) today and, as before, he gave us super clear, detailed info.

MRI results - they found two small "masses" which are predicted to be benign, but a followup ultrasound is recommended. If that doesn't clarify matters, there are one or two other MRI/Ultrasound/Biopsy tests they can do, and of course it's recommended that those are done before surgery.

Chemotherapy - as I indicated in an earlier blog, I fall in the hazy middle ground for the test they now  do (Oncotype DX) to help determine whether or not to do chemo. Percentages say that by continuing with the anti-horomone med I'm currently taking, my chances of cancer recurrence are about 13%. If I do chemo, my chances of recurrence are about 9% - only a 4% difference. But it can be an important 4% since if the recurrence is somewhere else in the body (bone/liver/lung/brain are most likely, in that order) it's not curable.

I'm torn. There's a lot of nasty side effects with chemo, most of which dissipate with time, but some occasionally don't. Plus the idea of putting that stuff into my body is just something I'd rather not do. On the other hand, lessening the chances of a recurrence sounds pretty good.

What we came up with for now is to wait for the pathology report after the surgery. I'm already taking the anti-hormone med, based on the suggestion from the surgeon not in our network, but most docs don't prescribe that til after surgery. Her experience is that if the post-op report comes back showing the cancer cells are dividing at a significantly lower rate than they were before, then we would know the drug is doing good work and chemo is likely not necessary. I get the sense that this isn't a typical suggestion by Dr. A, but he really respects that surgeon, and he agrees that it could be a helpful indicator one way or the other regarding chemo treatment for me. There's always about a 4 week waiting period between surgery and chemotherapy anyway, so at this point, I think I'll wait for those results.

Thankful for a "negative result" on the genetic test!
Thankful for super helpful medical team!
Thankful for super friends and family team!

Praying for:
Clear results from the MRI followup tests
Clear direction for chemo/no chemo decision

Negative result is positive news!

Got the results of the genetic test back today. Negative for the BRCA gene mutation.

So grateful. So relieved.

We meet with the medical oncologist on Friday. More info to absorb and decisions to make, I'm sure.

Thanks for your prayers.

A step at a time...

I decided on Surgeon #1. The choice was difficult only in that I think either would have been a good choice. But it feels good to have that figured out. It looks like surgery may be the week of March 28.

As part of this surgeon's team, I now have a Nurse Navigator who is super helpful in answering any big or small question, and in chasing down logistics. She has me scheduled this week with an MRI on Wednesday and an appointment with the medical oncologist on Friday. 

I'm frankly nervous about what the oncologist might say on Friday. The "Oncotype DX" test came back at 21 for me. This is the test which is a big piece of the decision whether chemo is warranted or not. As I understand it, under 17 would mean, "No chemo for you!" over 31 would mean, "Chemo for sure," and the hazy middle ground where I've landed is, well, hazy. I have a hunch that's what we'll be talking about on Friday.

Prayer requests:

   "Negative" for the BRCA genetic test

   MRI results that are clear and helpful (there can be false positives)

   No chemo needed - this decision might not get finalized til after surgery

I'm getting lots of great analogies from friends as to what this time in my life is like. "We're in a whiteout," comes from a hiking friend. We can only see a few steps ahead. So we take it one step at at time.

Grateful for you!

Waiting - and more info gleaned...

Hmmm - is the phrase "patiently waiting" an oxymoron? It is for me right now. I want answers now but evidently it takes some time to unravel genetic code. Ya think!? Isn't it amazing that such a thing is even possible?

We had a good appointment with a radiology oncologist today, and among a lot of other useful info he shared, the piece that is most logistically helpful right now is that there is some flexibility in how radiation and chemo appointments can be set up. As I look at possible mastectomy scenarios (keep praying for a negative BRCA report so that's not necessary!), I want to be sure I can be at my brother's wedding in June. The post-op treatments have timelines and waiting periods but the radiology doc (and later the PA for my medical oncologist) assured me that (of course!) working around big life events is not a new issue for them. We can make it work.

One question both Jon and I had was, "how does radiation work?" If it's going to get rid of cancer cells, why isn't it killing off good cells too? The radiology doc said that radiation "breaks" some DNA in cells but the cancer cells can't repair themselves as quickly and easily as normal cells can. Interesting!

Over the weekend I hope to finalize a decision about a surgeon, and then meet with some plastic surgeons next week. Again, I'm hoping their services won't be necessary but I'm hearing from medical advisors that it doesn't hurt at all to get all info possible beforehand.

And so we actively wait...

Surgeon #3 and Medical Oncololgist

Friday we met with two doctors, and learned still more information - some of it a bit sobering.

Surgeon #3 was great (really, every single person we've met so far, from the intake people to the nurses to the schedulers, has been super warm and helpful). In some ways, she didn't give us a lot of new info but it was helpful to meet her, and to solidify some of the details of what all the various tests and numbers mean.

We also liked the oncologist we met with. (I'm learning that all the docs involved with treating cancer are oncologists, so you have a surgical oncologist, a radiology oncologist, a medical oncologist, etc., etc., and that when you say "your oncologist" that means the medical oncologist.) The medical oncologist is the one who oversees all your treatment, and, as a few people have pointed out, is the one who is with you for the long haul - 5- 10 years or longer. As I posted earlier, it seems like this is the person you want to talk with first, rather than just the surgeon, so we were glad to have time with him.

Here's main new thing we learned from him.

He was very positive about the idea of genetic testing, not just because of screening for potential pancreatic cancer in the future, but also because of how it will help inform what type of surgery I undergo. I've been pretty much bouncing along thinking, "Oh, it will just be a lumpectomy and that's not a big deal," but if genetic testing shows positive for the BRCA1 or BRCA2 gene, then the chances of reoccurrence are at about 66%. Taking the anti-hormonal medication, which I've already started, reduces the chances to about 30%, but that's still not wonderful odds, so a double mastectomy reduces the chances to less than 5%.

That was a stunner. As I've looked back at my notes, I see that surgeon #2, who ordered the genetic testing, had said something along the lines of, "we might do the surgery differently" based on the test. But I did not hear that as starkly as the way the oncologist explained it.

I don't think everyone gets genetic testing done beforehand. But I have the double whammy in my family history of a mother who had breast cancer and her sister, my aunt, who died of pancreatic cancer at age 31.

Based on that information, it seems smartest to wait until that test is back - in about 4 weeks. By that time, we should also have information back about the other test they sent in which will help determine, no matter what kind of surgery I have, whether or not chemo is recommended.

So LOTS to pray about. A "not positive" test result for the BRCA genes sounds like a good prayer. Also, trust that God has this all in His Hands. Peace for my brain that wants to go down all sorts of different pathways. Wisdom as we keep sorting through all the possible paths to take.

We had a great Presidents' Day weekend on our now annual trek over to Black Butte in Central Oregon with the Harrels. Though we thought we'd be snowshoeing, you can see photos of why we hiked instead.

Our goal for the hike - Tamolitch Pool. Super clear, water looks very blue. Upstream of here, the McKenzie River goes underground for awhile and then re-emerges into this pool.

Surgeon #2

My brain is full of new information - and tomorrow we have two doctor's appointments. Good thing we get to go to Black Butte for the weekend for a welcome break!

This surgeon is the one who's been recommended by easily half of the people I've talked with. She's  very well-known and respected - and "out-of-network" for us (bummer!) She greeted me with a hug, and also gave me a hug as I left. Warm, smart and amazing.

It's hard to synthesize everything at this point. We're starting to learn some of the lingo and what might be on the path ahead. Some interesting things we learned today:

 - she suggested and we agreed that genetic testing would be helpful. Initially I thought, "Why bother? We don't have kids so..." But it turns out that the gene holding the marker for potential breast cancer (I may not be phrasing this exactly right) is the same gene for pancreatic cancer. And since my aunt died at age 31 with pancreatic cancer, this surgeon thinks it would be smart to know what my genes say so we could be more proactive about screening for that if need be.

 - she also recommends starting some hormonal therapy before surgery to see how the cancer cells respond. If, when they test the tumor after it's excised, they find that some of the cancer cells were killed off because of that, they know that any other cancer cells that may have "escaped" are going to respond in the same way. She's a pioneer in this treatment option and an oncology social worker I spoke to today (who just "happens" to be a long-time acquaintance of mine), said that for awhile, this surgeon was alone in recommending this, so it's not yet standard. It's an intriguing option and one I'll continue to explore.

 - this surgeon also recommended a test that would help us be more definitive as to whether chemo will be necessary or not. This is the piece of treatment options that, quite honestly, I'm hoping, hoping, hoping I don't have to do. Surgery - OK. Radiation - bring it on. Take hormonal meds for 5-10 years - I'm OK with that. Chemo - really, really rather not. So feel free to pray about that for me!

Friday we'll speak with surgeon #3 in the morning and then (minor miracle alert!) an oncologist in the afternoon. After I spoke with a nurse navigator (new term for me) for surgeon #1, she suggested we talk with an oncologist before surgery. (Jon and I have been wondering all along why that isn't the first person they recommend you talk with.) She told me, "Well, I'll try to get you in as soon as possible..." (subtext = this could be awhile). Five minutes later she called back, "This never happens! I went over to his office and he said he has an appointment open at 3:45 tomorrow." Woo hoo!

I might not have time to post again til Monday. Snow in Central Oregon is calling, plus relaxed time with friends. What a treat.

THANKS for walking the journey with me.

Surgeon #1

First I have to say I'm sorry the "notify me by email" gadget (Blogger's word, not mine) hasn't been working for most people. I've tried a fix of putting the sign-in at the bottom of this blog. Please let me know if it doesn't work for you, and we'll try, try again.


We saw the first surgeon today, and she was super helpful and informative. In brief:

 - I need to get an MRI before surgery so all possible tumors are visible - sounds like this is pretty standard

 - based on what she is seeing in the pathology report, most indicators are showing that I will likely not have to have radical surgery

 - If it's a lumpectomy (of which I'm hopeful), that could be day surgery (wow! I had no idea that a hospital stay was not a "for sure" event)


Some general things we learned that were news to me:

 -  the word "invasive" in the phrase "invasive ductal carcinoma" is scarier that it needs to be - this surgeon likes to use the word "infiltrative" - it means the tumor has infiltrated the ductal wall and is on the outside

 - 80% of breast cancers are not familial - in other words, just because my mother had cancer didn't mean I was automatically going to get it, and conversely, just because you don't have family history of it, that doesn't give you immunity. One in eight women will have some sort of breast cancer. I know that's not "good news" - but please take it as a friendly reminder to all of us women to self-check regularly :-)

 - there are a lot more indicators than just the Stage 1, 2, 3 etc. now.

 - one reason it's recommended not to spend too much time researching on the internet is because things are changing so fast - something that was completely accurate and relevant two years ago, could be completely outdated now


Another appointment tomorrow - more knowledge to gain.

Appointments with surgeons

I now have 3 appointments with surgeons this week - Wednesday, Thursday and Friday. Talking with a surgeon comes first in the process evidently, and then an oncologist joins the the team.

So I'm looking for clarity as to which to choose. I called one this morning on the basis of two strong recommendations, but she's retiring from her practice - bummer (for me, anyway). Because I've received so many names and stories, I've found that just as I think, "Ah, that's the one," then I hear another story that's not a rave review.  No one's perfect of course, but I'd like to feel secure in their hands.

Got another great way to look at this today - it's a plot twist!

Not in my plans...

A cancer diagnosis is not in anyone's plans. But it's a sharp reminder that, as much as I like to plan and "know" what's ahead on my calendar, "my times are in His hands."

I had a biopsy on Tuesday, after a mammogram and ultrasound. The positive diagnosis came on Thursday - #WorldCancerDay on Twitter (really?!) It's a mucinous invasive ductal carcinoma, which (according the johnshopkins website) accounts for less than 2% of breast cancers. As one friend told me, "It means you're special!" Nurse Soosie (good friend who is internet researching for me- thx!!) says that type is almost always a slow-growing cancer with a good prognosis that doesn't usually invade the lymph nodes.

Many, many people have recommended Dr. Nathalie Johnson but she's not covered by our insurance, so we're paying out-of-pocket for a consultation appointment with her on Thursday morning. Finding a surgeon is the next order of business, and besides talking with Dr. Johnson, I'm checking out the docs named by several wonderful friends.

I'll update as the journey continues.Thanks for your interest in this detour, and all your prayers and support. It means the world to me.