The PET/CT Results: Disappointing

This is a really tough post to write, because I'm upset.

I was hoping that the PET/CT I had on Monday would confirm the low tumor markers I've been having for the past four months--CEA (tumor marker) numbers that were in the normal range, meaning that my cancer was gone.

Well, I'm an optimist, and I liked that idea: That my cancer was in clinical remission with no active signs of disease, so I ran with it--in my own head, at least.

But that's why you never rely on one test alone when dealing with metastatic cancer.

The scans show that I still have at least three areas (we don't use the word "tumor" much around here) that light up, meaning that there is cancer activity there: one in my spine (T-11) and two in my pelvis. These are almost symmetrical: one is on the right posterior ilium and the other on the left anterior-superior iliac crest. (Please don't e-mail me and ask exactly where those are: Either look it up, or accept that they are in the pelvis and that's enough information.)

None of these spots is very large. They are either stable or show slight progression since my last PET/CT in November, despite the regimen of Tykerb and zometa. None of them is of any immediate danger to me, and I am not in any pain.

OK, so I am upset. When I finish this post, I am going to get into bed with a book, something to eat, and the companionship of the two dogs. I will be turning off the phone.

But really, it's good news
If you look back over my cancer history, I probably have fewer mets now than at any time since my cancer first metastasized to my bones--then I had more than a dozen. Maybe 20. I never asked Dr. L for an exact count, because it creeped me out too much.

And, as I said, these are small, not causing any pain, and are not in places where they are likely to cause a fracture. The only one I'm worried about at all is the one in my spine, because if it grows out of the bone, it could paralyze me--but it's not there yet. I saw it on the scan.

So, Dr. Lee and I went over the report, looked at the scans on the computer, and then discussed what to do.

What next?
He suggested putting me back on Avastin, in combination with the Tykerb and zometa, to see if we can shrink these spots even smaller, or at least keep them from growing, because they are growing on my present regimen.

I agreed to this.

I also still need to get a mammogram on my remaining breast, and we scheduled that for a couple of weeks out. Women who have had breast cancer in one breast have a 10 percent chance of getting a second, unrelated (not a metastases, in other words) cancer in the other breast.

So it's no use thinking lightening can't strike twice.

He also suggested that I get the BRCA test, to see if I have one of the genes that increases your risk for breast and ovarian cancer--oh, and colon cancer. The reason for this is that I was diagnosed at a young age (43), and my brother was diagnosed with colon cancer in his early 50s and died of it at 54.

So if I have the gene, I would be at greater risk for ovarian and colon cancer, but also Younger Son (the biological child) could be a carrier of the gene, and my sisters would also need to be informed so that they can increase their diligence.

That test is just a blood test, so I'll have it next time I'm in.

Then we discussed a colonoscopy, which I haven't had, despite my brother's colon cancer. Dr. Lee was straightforward, which is how I like my doctors to be--and he said the question really is: Am I going to live long enough that colon cancer is a possibility?

We decided that the answer is yes, so I will get the test. The other reason is that if I do have early stage disease, polyps, it can be cured very simply.

So I added a colonoscopy to my already full medical schedule for April and May.

What else? I gave Dr. Lee the posts I've written about cancer patients preferring to e-mail rather than call their doctors, complete with all the comments you folks had added, and told him this was a very polite request from me that they consider allowing patients to e-mail rather than call.

He was totally sweet about it, and said he would give it to the practice manager! So I will keep you posted on that.

OK--If you are new to my blog: DO NOT e-mail me with suggestions or advice of any kind. DO NOT suggest treatment regimens, alternative treatments, or anything else. I am not looking for advice.

Also, FOR NOW, please do not e-mail me with any questions about my disease status or these tests. I don't want to talk about it right now.

As always, messages of friendship and support (without the standard cliches, please) are always welcome. Please understand if I don't reply right away.

Thank you all for understanding, and for being my family.

@ Jeanne Sather 2008.

Comments

[Dee]

Jeanne, I am very sorry to hear this news. Thanks for letting me unload about the work situation on email - I appreciate your response even more knowing that you had disappointing news on your end. I'm thinking about you!

[Paul]

Hey Jeanne, very sorry to hear this. Everything sounds cliche but my thoughts are with you and if there's anything we can do let me know.

[Sara]

I must say, I am enjoying your strategy of decorating bummer or potentially bummer posts with the adorable picture of you hugging the puppy. It's not general anaesthesia, more like a spoonful of sugar, but still...

It's nice to have a full calendar, but this is ridiculous. Hang in there, honey.

[Carver]

Dear Jeanne,

I'm sorry this was the news you got today. You are in my thoughts. As ever, Carver

[Tim]

Jeanne,

I mean this when I say I am truly at a loss for words. All I can say is that you are in my and Deb's prayers and thoughts. If you need anything at all I am just a few miles down the road...please don't hesitate to ask. I won't pretend to understand what you are going through but I am a pretty good listener if you need one.

Tim

[jeanne]

Thank you all.

Sara--you made me smile, because that is exactly the thought I was having when I put that photo with this post. I don't have a depressed, unhappy-after-a-scan photo to post, so I just took my favorite one.

And Tim, brave soul, wading in. I love you for it.

Love you all.

Jeanne

[jessica]

wish I would have gotten here yesterday, but that doesn't change how very sorry i am. as always, your honesty is refreshing and deeply respected. though it doesn't appear as if you need it, i want to give you permission anyway. to do just the things that help you to cope and feel exactly as you do, moment to moment. we love you just the same. and i am honored to be considered a part of your family.

right here beside you, j.

[jeanne]

Jessica--love you, girl. Thanks.

[MaryM]

Sorry for your disappointment.

My husband went through several rounds of a really un-fun chemo combo, only to be told he hadn't responded enough to be considered for transplant therapy, and it was really hard to accept.

But -- he's feeling so much better! And even though he's not eligible for the possible "cure" he has beaten the disease back enough to have another treatment that holds a pretty good chance for a longer remission, hopefully at least a year.

It's like news happens a lot faster than our ability to accept and process it. One week he's short of breath and not well, a month later his hair is gone but his breath is back. Then we find out it wasn't "enough", but he's still feeling well and maybe something else can be tried.

About the only thing a sane person can do is decide what to have for dinner and whether to go out or watch a movie at home.

...

That is a really nice picture.

[jeanne]

Hi All--I edited the most recent comment above to take out the "advice to Jeanne" part. Please remember I am really sensitive, perhaps overly sensitive, about people telling me how to feel or what to do. So I cut that part.

Sharing her husband's story is a great way to give me support, however.

[Nat]

I absolutely hate how those tests can blindside us.

Sending hugs.

[Ingrid]

I'm new to reading your blog but wanted to write that I'm sorry for your difficult news. I wish you all the best, and I am thinking about you.

You and I were about the same age at diagnosis. I had the BRCA test last November because my surgeon, who is the same age as I am, thought 42 was too young to get breast cancer. My oncologist, who looks to be about 14 but must be in his 20s at least thought I didn't need the test because I was so old.

[john]

Some of us here have met you in person and some have not. I have not had that pleasure. No matter, you do have friends here who care and are here whenever you need us.

You have been a true friend to me in a short time. You let me know if I can return the favor in any way. Thanks A Million.

Your Friend,

John

[Beth Luce]

Jeanne, when I was diagnosed last year, you said the one thing that really comforted and shored me up. Now I'm returning it to you.

You can do this.

And with so many people who care about you, you've got better things to think about than cancer when this is too painful.

[jeanne]

Yup, I can do it. Whatever I have to face, I can do it. No question.

Thanks Beth for bouncing that back to me.

[debutaunt]

Want me to bring you a sombrero? Sombreros and my daughter Z always make things much more fun.

Hugs from SA. I could bring you some yummy salsa or something Texasy if you are interested :)

Much love, D&Z and Tim (and yes, take him up on it. He's a big dude and is good and moving things if you need that while cleaning)

[jeanne]

Debs--I would LOVE a sombrero. And some salsa--love salsa, and so does Older Son.

And thanks for the cute photos of Zoe--we'll take some more of her with kittens.

It is SNOWING right now, in Seattle. Hail a few minutes ago, and now snow. My plants! I went out and moved the planter boxes with the young pea plants in them up against the house so they shouldn't freeze.

[Lisa]

Jeanne, I am sorry to hear your news. Know that we are all in the blogosphere thinking about you. I wish I could bring you a warm cup of soup. Take care and play with those adorable kittens.

[laurie]

oh shit. I just finished emailing you and decide to come visit your blog after a week offline. I know that stable is good and that no pain is good but I so wanted you to really be in clinical remission. F*ck cancer.
On another note, you look drop dead gorgeous in the photo. ;-) big, big hug...

[rev shawn]

No advice ... just thoughts and prayers, and ALL the positive energy I can send your way, and I'm pretty sure I'm not alone in that ... wish there was more to offer ...

[jeanne]

Rev. Shawn! How are you? Where are you? Haven't heard from you in a long time. Please catch me up, either on the blog or in an e-mail.

Jeanne

[Tree McCurdy]

Oh damn.

Yes, you look fantastic-- isn't irony a bitch?
I don't like "comments", but it's past time I grabbed the chance to thank you for the wealth and vigor of your writing.
Through your blog I've begun to articulate my sense that the way in which we-as-a-nation handles those with cancer is as serious a cultural dysfunction as racism or sexism, and is maintained as status quo by parallel means, with similar ignored/hidden costs to humanity.

Anyway-- you kick ass, okay?

-- Tree

[jeanne]

Tree--thank you. I have to agree, and you put it so well: "The way in which we as a nation handle those with cancer is as serious a cultural dysfunction as racism or sexism ... "

Yup. I agree completely.

[Helen]

Lousy news, but fab picture. Can't express my feelings about your news without descending to cliches, but wanted you to know that I'm sending positive thoughts across the Atlantic to you.