Getting the scan results

Colin and I were on pins and needles the first week. Not knowing whether this was the beginning or a metastasis was extremely stressful. The appointment was at 11:45.

The Doctor took care of all the other appointments ahead of us so that he could have plenty of time to discuss things with us. We got the great news that this was the only discernible site, at least as a mass, at this time. (No scan can find individual cells that are moving.) So we discussed the surgery.

There is no evidence that a sentinel node biopsy is warranted for angiosarcoma, but by this time, I had read of several cases where it was found in the lymph nodes. We discussed what the lymph biopsy involved, and all agreed that it was prudent to proceed with the procedure. The surgery was scheduled for June 9th, the day after our Dana-Farber consult. After all of our reading, we were confident that the Dana-Farber folks would agree the mastectomy was necessary. Since I had become comfortable with the Lahey-Northshore surgery center (ganglion cyst/carpal tunnel in 2007, lumpectomy), we were not anxious to start over in a new place with a new surgeon, nor have a longer wait for the procedure.

We left the office in a state of relief. We called our folks, and then stopped at work to discuss the course of action with the nurses, and what documentation was required for medical leave. After that, we stopped at my group to report on the clear scans. Later several of my colleagues reported that they all let out a collective sigh of relief on hearing the news. That was true with everyone with whom we had discussed this.

Ruth Ann with edits by Colin

MRI and PET/CT

To determine whether the tumor was primary or a metastasis, I was scheduled for a PET/CT and an MRI. Both were grueling in their own way.

Magnetic Resonance Imaging
5PM Wednesday May 27, 2009

For the MRI, I was face down . There was a ramp that sloped up with two holes for my breasts to hang down. There was a bend in the ramp, so the part with the holes was flat. The transition from the ramp to the flat pressed against my lower rib cage in such a way that getting a full breath was impossible. My face was supported by a ring like you would have on a massage table. I had to have my arms above my head, so I looked like a diver would on entering the water. Oh, and an IV in my hand connected to a curly tube to deliver contrast at the right part of the scan. The whole test ran about 40 minutes. I had ear plugs, but could still hear the sounds quite well. A sample of MRI sounds is here: http://www.lodestone.co.uk/faqscansounds.htm The technician would tell me how long the series coming up would be: this one will be three minutes, this one will be nine….. What a relief when he called thirty seconds.

Positron Emission Tomography/Computed Tomography
8 AM Thursday May 28, 2009


PET Information

CT Information

I arrived for the PET/CT scan in the morning. “Well hydrated and not having had breakfast”. I was taken in, and told to put everything in the locker, including my puzzles and reading material. They want you to lay quietly so a busy brain does not interfere with the scan. I was prepped with an iv port, in the same vein as used for my MRI….saving my left hand for subsequent use. A nurse came in with a huge heavy cart. I think it was the prep process in a box. There was a tube hanging out and she connected it to my port and hit go and the F-18 flowed in. After that, I was tucked in (in a recliner) and told to lie quietly. I think I slept a few minutes. Before I knew it, they said it was time for the scan. I got to lie on my back this time. The tech was tucking me in and putting pillows under my knees to make me comfy, I was thinking what a breeze this would be compared to the MRI. Just when I thought we were finished, he put a pillow on the table above my head and said: “OK, arms up there….”. By the time I realized that my poor shoulders could really have used two pillows, it was really too late. So, another 40 minutes of lying still and gritting my teeth.

Back at work, the first week

Not knowing what was going to happen when, I had to start the process of telling folks at work that I was going to be taking time off over the summer. The week was a whirlwind of cleaning up projects, reading as much as possible, and looking into what to do after surgery. I took the bull by the horns and called the Sarcoma Center at Dana-Farber and made an appointment. The first appointment I could get was June 8th due to a national oncology conference! In a way, it was good to have a week off to gather thoughts and prepare.

We visited our attorney to make sure our paperwork was in order (long overdue!).

Getting by -- Memorial Day weekend

For the rest of the weekend, we worked in the yard, took it easy, had friends over for a planned cookout, and on Monday went to the beach. Not knowing what the summer would be like, we decided we better get to the beach while we could. We couldn't have had a better day for it. We hiked up and down the beach, the kids built a castle, and the water was warm enough for Noelle to go in.

We also made more phone calls and visited other neighbors to tell them what was going on. It was a bit surreal since I felt perfectly healthy. I know that I kept thinking that this was a dream and I would wake up and it would be over. Or, I was thinking they would call back and say oh, we made a big mistake.

The next day

We woke up on the Saturday of Memorial Day weekend still in a surreal state. We had a party to go to and cookies to bake. We bit the bullet and told Emma at breakfast. Bad news doesn't get any better with age, and Emma would be able to tell things were not normal. She would be upset if we hid this from her.

While we were baking the chocolate chip cookies, Noelle kept trying to eat the dough. We kept telling her not to eat it because of the raw eggs. I finally sat her down and said that I had a big sickness, and that it would be important for everyone in the family not to get any little sicknesses since that could keep me from getting better. That kept her from trying to eat more dough, but I am not sure what she really understood at the time.

We decided that now that the kids knew, we would have to start telling people before they found out by accident. We started with our two closest neighbors. One neighbor is a radiology technician, so she was going to ask around at work to see what anyone knew about this and who they would recommend. Our other neighbors are both hospital pharmacists. Neither had heard of angiosarcoma. After discussing it, they said that since it was an epithelial cell cancer, there might be hope in some of the newer drugs for this class of cancer.

We were having a cookout with friends on Sunday, so I called and talked to them, rather than springing it on them in person. My friend had a brother who died, tragically, of testicular cancer, and her mother had had breast cancer. She and her husband are also technical, so the discussion of the rarity of this was lively.

The hardest thing that day was to go to the party with Colin's colleagues and act as though everything was fine. We managed and the girls had a good time. The party was blessing for us that evening.

Ruth Ann (edits/additions by Colin)

The first day (Colin's view)

Neither of us were worried before the surgery or going into RA's surgical followup appointment. We knew before the surgery that the odds were in our favor: the lumpectomy was low risk, and the odds of finding something "bad" were VERY low. I guess having a good understanding of math can work against you at times.

As we heard the bad news my brain kicked into overdrive. In computer terms, I started spawning many parallel 'threads' of thought: about losing RA, about how to tell the kids, raising two girls as a single father, never heard of angiosarcoma...

But outwardly, I don't think anything showed. At least to me, we both continued the visit with our surgeon in a very methodical, logical way. It wasn't until he left the examining room and RA started to get dressed that we let go.

And then we pulled ourselves together, left the room, arranged appointments, told our parents, and went back to work. Because it was the right thing to do. No, it was the only thing to do...

Neither of us really slept that night. In the coming week, while waiting to find out if this was the only tumor, I was going to discover how little sleep I actually needed to function.

The first day.

I guess I should have thought more about it when my surgeon said that my path results were “unusual” and they had been sent to another lab for analysis. But I had had “unusual” results before and it was just a lab error, so I didn’t think much about it. When Colin and I arrived for my follow-up appointment, we all sat down, and he started in with “What the pathology here at Lahey showed was a rare cancer called angiosarcoma……..” I think I said something like “Well, I guess our summer is going to be a lot different than we had planned.” As I think back to that appointment, I cannot believe that I, no we, were able to just sit and listen to him and have a rational discussion about further treatment. But we did it. For the first time in my life, it really hit home that I could die early and not see my girls grow up. We were still waiting to hear the second opinion on the pathology from Dr. Fletcher at Dana Farber. As the appointment was winding up, we were in the process of exchanging phone numbers to hear the pathology results as soon as possible. Though, a "no" would have just put us in limbo until a third opinion could be found. At the last minute, the phone rang and it was the results, a yes. We then stopped to get appointments for MRI, Pet/CT, an appointment for a week later to see what the scans revealed, and I had orders for more blood work and a Chest X-ray.

We left Lahey in a fog. I got on the phone and called my folks before we were even out of the parking lot and then called Colin's Mom. We stopped for lunch, not so hungry, but for something to do. I had the Tom Yum soup. The hot spices were a wakeup call that we are here in the world and this was not a dream.

I had things to finish up in the office, it was hard to go in and not show anything. The first thing I did was sit down and Google angiosarcoma. This is so rare, that there aren't a lot of definitive studies. The first paper I read had a survival rate at 5 years of 20%. I was completely unable to absorb that, and then looked at the publication date, and it was 1992. Ancient history in cancer terms! Didn't have the time or the privacy to really do any further searching. One of my colleagues stopped by to chat before leaving the office. We had things to do so needed to plan for the following week. I started saying well, I will be out this day and then that day... He said what are you doing? Falling apart? And I said I guess that is how you put it.

Of course when I got home, our neighbor was mowing the lawn. More straight faces, decisions about who to tell and when.

I was able to get my sister on the phone. We had a long discussion about it, and she said she would tap her network at U. Mich. Hospital where she works. It is good to have connections to people in the healthcare field. Inevitably someone knows someone who knows someone. It also helps to have an MS in Biomedical Engineering, even if your thesis had more to do with control systems, signals and analysis than with biology.

As we were getting the kids in bed, my brother called from CA. I called him back a bit later. I could tell from his voice he was not expecting what I was about to say. He said our sister had called and had asked if he had spoken to me. When he said no, she just said well call her. Poor thing, he thought I was going to say we were expecting! Even though I never ever want to be pregnant again, I thought well too bad that is not it ;-).

Neither of us slept much that night.