Take two

Nothing new on the test result front. Two more tests today: Left breast (good one) MRI and CT scan.

It is interesting how your definition of good news can change based on your current reality. Like when somebody is hitting you over the head with a large two by four and they stop for a bit, you think, “oh, how lovely, what good news.”

We have without question found the right doctor. He worked with the pathologist to get us early preliminary results so we didn’t have to wait for the full work up. In other words he treated us like adults (by assuming we could internalize the concept of preliminary) and he responded with a sense of urgency reflective of the situation. Fantastic.

From the start Dr. Dirbas has been very honest with us. Yesterday he was very clear that we were dealing with a potentially life threatening situation and that it was very real. I didn’t put this in my update but he used the phrase “hopefully something we can treat” many more times than I would have liked (This is the two by four).

Today he said the biopsy results changed his thinking and it is shaping up to be something curable (This is where the two by four stops for a bit). The preliminary results show DCIS contained in the ducts with no invasion. The kind or type of cancer is high grade Comedo (grade 3) which is the most aggressive form of DCIS. Comedo spreads so fast it leaves behind necrosis (dead cells) which are probably what we are seeing in that 10/7/6/6.5 cm area [1] of calcification. This means we want to get it out fast.

Today opened up the possibility we might be able to avoid chemo but it will depend on the final pathology results.

Next up is:

• Wait for final pathology report (next week)
• Wait for other assorted test results (unclear timeline)
• Full mastectomy (two-ish weeks away)

[1] I’m starting a betting pool. The mammogram indicates the area is 10 cm, the MRI 6 cm, Dr. Dirbas estimates 7 cm, and the oncologist thought it was 6.5 cm. Tune in next week when we find out who is right.

Path report back on the axillary lymph. Clear, no malignancy. This means if it spread to any lymph nodes they are lymph nodes in and around the breast. It hasn’t ruled out spreading but it identified one place is hasn’t gone.  This is fantastic news as the axillary lymph node is considered the “gateway” to the rest of the body.

Raise a glass to us tonight. I for one plan on being pretty drunk as soon as possible.

We just finished the appointment with Dr. Dirbas. We seem to be moving fast which is good. The news was not.

The good news is he was really upset about the 1.24 biopsy and that none of his staff had let him know about this issue. We vented to him about our experience so far and I was going to write “he seemed to internalize it and was apologetic.” Turned out he both internalized it and was really pissed off. He left the room for about 20 minutes and came back with a team of doctors. We had the oncologist, the pathology team, a couple of his students…at one point we had six doctors in our little room.

In other good news, Dr. Dirbas felt from the physical examination that the cancer was contained to an area which makes it easier to successfully remove. This doesn’t imply it didn’t spread but it will make the mastectomy easier.

So we just had a lymph node biopsy of that axillary lymph. This involves ramming a large needle into Jul’s armpit and rotating it around. Three times. Yuck. While the pathology team was doing that Dr. Dirbas freed up time to do the core biopsy himself. This is where they make a slit in Jul’s breast and drive a thick biopsy needle to extract tissue. About nine times. My wife was a trooper and plowed on through. When Dr. Dirbas took the core samples and dropped them into a solution for the pathologist he said it was good that they didn’t sink too fast. So we spent the rest of the time watching samples sink and trying to determine if it was fast or not. The last one sunk fast. Shoot. In the end it doesn’t really tell you anything but one has to stay occupied somehow.

The bad news is the size of the infected area was very concerning. From a physical examination he estimates the area at 7cm. He also suspects that because the lymph nodes are swollen (before we have done any tests like a biopsy) most likely suggests that they contain malignant cells. He is worried about the axillary node and one other node just above it. They typically do chemo one there is any spreading to the lymph nodes.

So what’s next?

• We should hear the results of the lymph node biopsy today and the core biopsy tomorrow
• We just did blood work and a chest X-ray
• On deck is another MRI on the other breast, a bone scan and CT scan — we are working on scheduling these
• We are a good path here and Dr. Dirbas rocks so we aren’t heading East…for now

Other things of note:

• It is not uncommon that the MRI and mammogram show different results so he isn’t surprised by the 6 vs. 10 cm area. He doesn’t consider either test more effective. It isn’t until it is out that you know for sure.
• The reason he wants to do a core biopsy is that it has less impact than a surgical biopsy but still returns good results. The surgical biopsy also seems to be more dangerous and damages surrounding skin.
• The sentinel node is not a specific node but instead “the first node that is on the path out of the breast.” They figure this out using dye before the mastectomy so they know what to take out. Dr. Dribas wouldn’t be surprised if the axillary node is Jul’s sentinel node.  

Mom and Dad got us plane tickets to Baltimore leaving Wednesday morning. Martha is going to stay and babysit Sumo.

Thanks again for all the support.

John’s Hopkins has an amazing site dedicated to breast cancer that allows you to submit questions to breast cancer specialists. Jul posted a question on the site Saturday afternoon. A couple of hours later they responded and told us they could get us in for a biopsy on Tuesday or Wednesday and get us the results the next day. It was like a breath of fresh air to get doctors who act like there is some sense of urgency. John’s Hopkins is the one of the top five cancer hospitals in the nation, my sister and her husband’s family live right down the street, and we have contacts to people at the hospital.  Short of a drastic change from Stanford, I think this is where we are headed.

Dr. Dirbas’ nurse called and read us the MRI results tonight. Relative to the crap news as of late, the results weren’t terrible. The “area of concern” shown by the MRI was only 6cm, instead of the 10cm shown by the mammogram. We aren’t sure why these are different but a totally uneducated hope might be that an MRI was more accurate than a mammogram.

In other positive news, the MRI showed no visible signs of spreading outside of the ducts. So cancer didn’t appear to have made it to the tissue. Only the biopsy can rule it out but it is good news none the less.

There is something called micro-invasion which is basically microscopic spreading of the cancer. The nurse said they can only tell if this has happened once they remove the breast. We think (but aren’t sure) that if there is microscopic spreading chemo would be required but microscopic spreading is better than “invasion” which would require lots of hard hitting chemo. So if you meditate, cross your figures, pray, dance, sacrifice goats, whatever, just focus on “no invasion, no invasion, no invasion.”

The MRI did show a “prominent” axillary lymph node (under the armpit) as Jul was feeling. We aren’t sure what “prominent” implies but we assume this is radiologist for “swollen.” There are a number of reasons why it might be swollen that aren’t cancer so this news is inconclusive. It could just be responding to the cancer attacking the body or it could represent spreading. One new technique doctors are using is to look at what they call the sentinel node which is the closest lymph to the breast for signs of spreading. Logically this is the first place the cancer would go. This makes sense and we don’t know why the axillary node might be swollen but not the sentinel node. That was a long paragraph just to say we don’t know what the heck this means. Hopefully you skimmed it.

On the less good news front the scheduler got back to us on the biopsy. Looks like we can’t get in until 1/24 which seems like, well, about a year from now. She was rather indignant about our protests explaining to us that there are other women that are just as worried as us. I’m not asking you to put us in front of other people, I’m asking you to figure out a way to do them all sooner. That’s the kind of stuff that makes me want to strangle somebody. You can take your indignant attitude and shove it up your cancer-free ass. You get to go home and watch a movie, I have to go home and spend the night staring at the ceiling.

We are looking at a lot of different options including sending Jul out to John’s Hopkins for the biopsy.

I’ve got a sleeping pug on my lap and I’m a good way through a bottle of wine so I’m off to watch late night infomercials and buy something I will regret in the morning.

 No more planned doctors or tests until Tuesday (except acupuncture today). We talked with Dr. Dirbas’ nurse (Dirbas is the surgeon in oncology) yesterday evening and she said she submitted the requisition for the biopsy next Tuesday after our appointment. She hasn’t heard back yet but we are hoping to hear today so we can feel good about everything being scheduled that needs to be.  So now we wait. Ugh.

Story of the day is about Admiral Stockdale. Remember him? He ran with Perot as the VP. He had a pretty rough debate that made him look pretty bad but he is actually an amazing man. He was a prisoner of war during in Vietnam. He ended up spending eight years in prison camp. When asked how he survived he said he never lost faith that he would get out. He said the optimists didn’t survive. They always thought they would get out by a certain date and then that date would pass. He emphasized that you shouldn’t confuse believing you will make it through with optimism. Retain faith that you will prevail in the end but confront the most brutal facts of your current reality.

Stupid brutal facts.

And we wait.

We met with the reconstructive surgeon this afternoon. He was doing us a favor by meeting with us over his lunch break between surgeries. Jul doesn’t have much of a stomach so they can’t use it as a, errr, filler. This leaves an implant as the only option — something I never thought we would be discussing.

Basically during the mastectomy they insert an empty implant with a metal seal. While Jul is healing they use a magnet to find the seal and slowly fill it with saline. This allows the skin and muscle to heal slowly and stretch out around the implant. Once it gets to the right size they replace it with a real implant and adjust the other one to match. Radiation can damage the skin around the implant so about 50% of all breast reconstructions need to go back in to change or save the reconstruction. Chemo won’t impact any decisions in this area. We will talk more with him in detail when we figure out what direction we will be heading.  

His priorities seemed in line with ours:

1. Get rid of the cancer
2. Heal without infection
3. Reconstruction

Well the MRI was uneventful aside from it being crazy noisy (so loud you have to wear ear plugs) and the tech being visibly annoyed that I insisted on going into the room with Jul. It took about an hour and they were running about an hour late so we didn’t get out until 11:00 PM. They did several different runs, one of which included contrast under pressure. Jul described it as “the most uncomfortable I’ve ever been.” I’m not actually capable of staying still for 40 odd minutes so it is good I wasn’t the one who had to be in the tube. It also means “testicle ripped out through abdomen” is still the most uncomfortable I’ve ever been.

Again our “angel on the inside” helped us and called the radiologist at the center to make sure they read our MRI pictures first allowing the results to be available by Friday in case we need them.

Tomorrow we meet with the reconstructive surgeon and the therapist that helped me get through my cancer experience.