Surgery scheduled: June 17

This afternoon we met with Dr. Douglas Hanto, the surgeon, and his team. He described the placement of the growth in Deb's liver and the plan of surgery. The most likely possibility -- he won't know for sure until he starts operating -- is to remove the entire left lobe of the liver. It's possible that a smaller extraction would be enough, but he doubts it.

That may not be as bad as it sounds. He anticipates a four hour surgery, five days in the hospital, 4-6 weeks of recovery, and three months until "you don't feel like you had an operation". I hadn't been sure that there wouldn't be permanent consequences, so that sounded pretty good.

Naturally, there are all kinds of things that can go wrong -- Dr. Hanto listed them for us -- so any of those recovery targets could slip. But none of the risks sounds all that bad compared to a breast cancer or GIST recurrence, which was what we were picturing a week ago.

Various people have been telling us that livers regenerate, and today we finally got some details: Lobes don't grow back, but the liver in general grows when it's being used to its capacity -- sort of the same way muscles do. So after a month or so Deb would have a normal-sized liver, except that it would all be in a super-sized right lobe. The lobes aren't purpose-specific, so a big right lobe can do everything a complete liver does.

We opted for June 17, which was one of the earliest dates we could get. (This is a situation where we would rather have the surgeon we want than get it done fast.) That blows away our plans to go to the General Assembly of the UUA -- which starts the day we would plan for Deb to get out of the hospital -- so if you were planning to see us there we'll have to connect some other way.

Deb continues to have no symptoms worth mentioning, so we plan to live a normal life for the next three weeks or so.

Still looking better than expected

After the pathologists had another couple days to look at Deb's biopsy, they came to the same conclusions: not breast cancer, not a GIST, probably something very rare called epithelioid angiomyolipoma. It's a serious thing, but (as Dr. Pandya says) "very good news compared to the other scenarios we were considering".

The liver surgeon has looked at the CT images, and says he can take the growth out. We don't know when that will happen. We're meeting the surgeon Wednesday to find out what surgery and recovery entails.

We hope to get a definite surgery date then, but we'll see. The good news that this might be less life-threatening that it first appeared has the associated bad news that removing it may not be as high a priority for the surgery-scheduling people.

The mood in our household is considerably improved. We have learned not to put too much trust in needle biopsies, so we won't really relax until a pathologist looks at what the surgeon takes out. But active disaster planning has been suspended.

When I know something more, I'll pass it on.

Some news, mostly better than expected

We just got off the phone with Dr. Pandya. The biopsy did not hit the tumor as well as they would have liked, so all the conclusions are iffy. But it's definitely not a recurrence of breast cancer, which was the worst possibility. It's also probably not a recurrence of the GIST, which is what we were expecting.

The best explanation so far is a third kind of cancer, one that is extremely rare: epithelioid angiomyolipoma. (I had never heard of it either.) It's sufficiently strange that there aren't statistics worth mentioning. You take it out, and most of the time it doesn't come back, but sometimes it does.

All in all, that's a better deal than either of us were expecting: liver surgery, which looks tricky but is probably doable, and then we wait and see, with some reasonable amount of hope.

And remember: That's all still tentative. There were some other tests they want to run, the GIST recurrence is not completely ruled out, and Pandya hasn't got a definite I-can-do-that from the liver surgeon yet.

She's planning to call us back tomorrow.

No news till Wednesday

We just got back from meeting our new oncologist, Shuchi Pandya, a woman who seemed competent and personable, and has one of the qualities I admire in our previous oncologist, Roger Lange: not seeming pressed for time, no matter how many questions you ask. (We have been told that Dr. Lange, who we have been seeing since 1996, is on indefinite personal leave for a health problem. Good luck to him.)

The biopsy is not back yet, but Dr. Pandya expects it Wednesday for a meeting a group of doctors (including the surgeon who removed Deb's GIST in 2003, and another surgeon who specializes in liver surgery) is having at noon. We expect to hear from Dr. Pandya late Wednesday afternoon.

Biopsy complete. Now we wait.

We are back home now. The biopsy is done and we won't have results until sometime next week.

We arrived at Beth Israel Deaconess in Boston at 7:30. We had stayed with friends in Lexington Tuesday night so that we wouldn't have to drive quite so far.

After some prep, Deb was taken away for the procedure at around 9. Conceptually, it's pretty simple: They gave her a local anesthetic, hooked up an ultrasound machine so that they could see what they were doing, and stuck a needle into the mysterious part of her liver. They had to stick her twice before they were confident that they had what they wanted -- which we had been warned was about average.

I got to see her again about 10:30. She was drowsy (and I wasn't much better) so we did nothing in particular while the nurses waited to see if it was safe to take her home. They had her drink some juice, eat two small muffins, and walk around a little. None of that produced any bad result, so they let us leave at about 1.

She's got two band-aids on her side, and a small bruise. We stopped for lunch on the way home; she had a good appetite and seemed to enjoy eating. We were back in Nashua a little after 3.

She's planning to stay home from work tomorrow, and doesn't usually work on Fridays anyway. Monday we have an appointment with the oncologist. (That's another wrinkle: The oncologist we've been seeing for 15 years is on leave, so we'll be dealing with somebody we don't know.) The biopsy results may or may not be available by then, but we'll talk about possibilities and treatments.

Offers to help are pouring in -- as they did in 1996 and 2003 -- but so far there isn't much to do. We're planning a lazy weekend.

 

Deb Gets Biopsy Wednesday

Friends,

I'm writing to share with you a little information and a lot of uncertainty.

Deb is having a biopsy on her liver on Wednesday morning at the Beth Israel Deaconess hospital in Boston. It's an outpatient procedure and we expect to be home Wednesday night. The results won't be known for several days, probably not until after the weekend.

This is happening because she had her regularly scheduled CT scan last Tuesday. All along, there have been small lesions in her liver, which the doctors did not regard as unusual. I have imagined them as the internal-organ equivalent of pimples or warts -- blemishes most people have and don't worry about. In this scan, one of them was suddenly three times larger than it had been six months before. That's what they want to grab a piece of and analyze.

It's done by sticking a needle into her liver, guided by ultrasound imaging.

The results of this could be anything. There are some harmless explanations. Or it could be a recurrence of the breast cancer she had in 1996 or the GIST cancer she had in 2003. (The GIST was peeled away from the outside of the liver, and that was where we were most worried about recurrences then.) It could even be something new -- a person who has had two completely independent cancers can't be all that surprised to see a third.

We are trying to maintain a general awareness of the gravity of the situation while not focusing on the specific scenarios. We'll know a lot more in a week or so, and we'll make a more detailed plan then.

If not for the CT scan, we would have no reason to think anything is wrong. She has no worrisome symptoms and her general energy and mood has been slightly better than usual lately.

When we know something more definite, I'll pass it on as quickly as I can.

The Story So Far

I'm Doug Muder. Deb Bodeau is my wife. We're in our 50s and have been married since 1984. We're the kind of couple who finish each other's sentences and give a significant amount of thought each day to the question of how to make each other happy.

Deb was diagnosed with breast cancer in 1996. It was a harrowing experience, with nine months of really intense treatment. I thought she would die; she thought she would live. I was happy to be wrong.

In 2003 she had a completely different cancer. Even the surgeon had trouble figuring out what kind of tumor it was, and I was once again pretty sure she was dying until a few days later when the pathologist identified it as a gastro-intestinal stromal tumor (GIST) that would respond to the new miracle drug Gleevec.

Return to normal. Eight years go by.

Last week the semi-annual CT scan found something in her liver. We're having it biopsied the day after tomorrow.

For the earlier cancers, I sent news via email to our friends and relatives, and collected my emails on a web page. They make a compelling story. I sometimes get email from strangers who are dealing with their own (or their spouse's) health problems.

I'm still sending the emails, but it seems obvious now that these belong on a blog rather than a 1990s-style web page.

The update that's missing from the web page is from last fall -- I didn't write one. I had stopped worrying about the semi-annual CT scans and assumed everyone else had too. This time, I wasn't happy to be wrong.