Yet anther clean CT Scan!

Ruth Ann's latest CT was clean. She had the scan Thursday, got the results today.

Next scan will be in September.

Another Clean CT Scan!!!!!

Ruth Ann's latest CT was clean. She had the scan Friday, got the results today.

Colin

Another Clean Scan!

CT scan yesterday. Her oncologist read the CT, said it looked clean.

Next scan in 4 months.

Another Clean Scan

Third CT scan was clean. Next scan in July.

CT scan was clean!

Good Christmas present. Next scan in 3 months or so....

Colin

Drains

Colin had joked with the Doctor about doing a spreadsheet with my drainage. When we went to the appointment on Monday where we were told that the drains were staying in for another few days, he gave us a hard time about the messy hand-written sheet we had. The chart is Colin's stab with an excel spreadsheet and a linear fit.

I managed to put all the data points in MATLAB with relative times and also calculated the drainage rate for each interval. I used MATLAB's Polyfit function to fit a second degree polynomial to each set of data, just for grins.

Surprisingly, the Doctor said he has just had another patient diagnosed with angio-sarcoma of the breast. Primary angiosarcoma should be a once-a-career finding for a surgeon, so to have two within two months is definitely an outlier.

Ruth Ann & Colin

Wah! Setback.

In order to reduce swelling after surgery like mine, drains are inserted. They have a bulb at the end to collect fluid, and when the drains are emptied, you squeeze it before re-plugging it to provide suction. In order to get them out, I needed to have less than 30cc. of drainage each day. It was clear that I was not going to meet the milestone for my appt. on the 19th of June, so I was re-scheduled for Monday the 22nd. He took a look, looked at my drainage record and said three more days! Sorry to whine, but wah! I was so hoping these things would come out. I really cannot move my arm much until they do. I am not allowed to drive until they come out. Wah, Wah, Wah!

Mastectomy -- Colin's view (9 June 09)

After RA was prepped (changed, IV, etc.) I was able to go back and sit with her in the pre-op waiting area. Eventually it was time for her to go to nuclear medicine for the radioactive tracer injection (used to find lymph nodes for the sentinel node biopsy). I was told there was no place to wait* with her at nuclear medicine, so I did not go with her. She was gone a long time, so I waited outside in the day surgery registration waiting room. I saw her come back from nuclear medicine and went back with her to wait for the surgery.

We had good visits with the anesthesiologist and the surgeon while waiting. The surgeon had a medical student with him, and the pre-op discussions indicated he had suspected the lump was not normal due to its "feel".

RA was taken back for surgery around 1135. I went to the waiting room, pulled out my laptop, got online and worked for 2 hours while watching her progress on the status monitor. When her status changed to 'closing' I started shutting down and putting away my laptop. Overall, she was in surgery for about 2.5 hours. The surgeon came out and chatted with me while she was on her way up to recovery. He said everything went fine. He took all the skin he could, and the base tissue looked good (intact, not impacted by the lumpectomy, with no visible signs of a tumor).

I watched the status monitor to see when I could go up and join RA in recovery. Eventually I was paged, with a request to go to the day surgery registration desk. I went up, and was told RA was OK, but it would be about 30 minutes before I could go back. I just looked at the recovery nurse and said "No, not acceptable". I said she needed me there, this was NOT run-of-the-mill breast cancer, and I would be quiet and stay out of the way. She let me in.

We had arranged with the pre-op nurse for me to go back ASAP after she came back from surgery, but that deal was obviously not honored. At some point I must do a post dedicated to how the medical system is setup to handle "average" patients/spouses, not those of us who are a bit more proactive and knowledgeable. I suspect they imagined they were doing me a favor by hiding the harmless, but potentially "scary" post-anesthesia side effects like the shivers.

RA was barely awake, but was responding to questions about pain as they tried to balance IV pain medication and her recovery from general anesthesia. Her vital signs were very good. The O2 sensor was flaky, which meant the monitor kept beeping. Poor design, and from my view unacceptable if the patient really needed to be monitored (the nurse mostly ignored the monitor due to the O2 sensor). I stuck my hand through the slot in the bed railing and gently stroked her left arm. It seemed to help some. Eventually she was moved to a hospital room.


* Which I found out later was incorrect, and she did have a long wait for the injection. Oh, well. Sometimes I believe what I'm told without pushing back....by now I should know better.

Mastectomy (9 June 09)

The plan for the day: Complete mastectomy of the right breast with sentinel node biopsy.

We got up and had a relatively normal morning before heading off to Lahey North in Peabody for my surgery. I enjoyed my black coffee during the drive. With an 11:45 procedure, I was allowed to have clear liquids including black coffee up until 8:30. Got there for the same old procedure... but this time, I had a detour through nuclear medicine to get the radioactive tracer injected. This, along with a blue dye, would provide guidance to the surgeon to the lymph nodes to be removed. For a change, I had a hospital gown with the slit offset to the side. No running around with my bottom on view. It also had snaps at the shoulders. Made procedures easier. Not that I am exactly shy or modest, but I have found that acting shy and modest keeps others from being embarrassed.

I had a long wait before and after down at nuclear medicine. They had told us that Colin could not come down with me "since there was no room for him". This was true for the 10 minutes I was in getting the (VERY PAINFUL) injections of the tracer*. The tech who did my prep was "due in two weeks", so how radioactive can the stuff be? But, for the other 50 minutes before and afterward, I could have used the company. The area was under construction, and the waiting room was the hall. At least I had reading material.

When I got back up, we talked to the surgeon and the anesthesiologist about what was coming up. We re-discussed the sentinel node, the opinion offered at Dana Farber, and the fact that we disagreed with DF. We went into this fully aware that a negative reading in the nodes does not necessarily mean all is good, but that a finding in the node would definitely provide information (bad....). We discussed follow-up, and his contact at Mass General recommends radiation. We may get a second opinion on the oncology side, just to provide more interesting statistical problems for Colin and I to solve;-). (Notwithstanding, that the sample sizes for primary angiosarcoma are too small to provide any statistical confidence). The anesthesiologist was the same doctor I had for both my hand surgery in 2007 and my lumpectomy four weeks before. It was nice dealing with the same doctors, nurses, and the overall situation for this surgery. I can definitely recommend the day surgery center at Lahey North. Finally, the time was at hand, and I hopped on the gurney, they connected the IV, put in some sedative, and we were off. I remember getting into the OR, moving to the table, and then it was lights out.

I woke up with the worst case of the shivers you can imagine. I didn't particularly feel cold, but they piled warm blankets on me and gave me demerol. I felt like the weight of the blankets did more than their warmth. I got some more pain medication through the iv. They were doing all sorts of things, making notes, etc. And then Colin came in and off we went to my hospital room about 45 minutes later.

*Note to anyone who will be having this, ask for EMLA so it is less uncomfortable.

Oncology Consult (8 June 09)

We met with an oncologist and surgeon from the Dana-Farber Sarcoma Center. All records related to this had been forwarded to them. After filling out more reams of paperwork, meeting the administrator, meeting the PA to go over the current details, we finally met the oncologist. He had a very laid-back style. We really liked him and his "bedside manner". According to him, Dana-Farber's current thinking is to watch and wait with primary angiosarcoma of the breast. There is no evidence that chemotherapy will prevent a recurrence. They believe it is better to scan frequently to catch any reoccurrance as soon as possible. He did say "...but if you will sleep better by are doing chemo (aka doing something), we can do that too.." My retort was "first do no harm". We did take their literature describing the various chemo options for reference.

Eventually, the surgeon joined us with his medical students. His bedisde manner was less...polished. We discussed the planned surgery. He thought the sentinel node biopsy was "totally unnecessary surgery". We did discuss what he thought was appropriate: removal of as much tissue border, including skin, as possible and removing the fascia on the underlying muscle. Colin noted everything for a final discussion with my surgeon the following morning. Once again, the best possible news that there could be, given the situation.

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

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.

Prologue

On March 23rd, my Doctor found a lump in my right breast. A mammogram and ultrasound revealed a "hyper-echoic" mass about 2.5 cm in diameter. Since breast cancer is hypoechoic, the chance that this was not cancer was about 99.999%. We scheduled a lumpectomy since the lump was large and "probably the kind of benign mass that would get larger and more uncomfortable". I had my lumpectomy on May 12th, 2009. The lump was sent to pathology. I got a call from my surgeon saying that the results of the path were unusual, and that it had been sent to another lab for further testing. At my follow-up appointment on Friday May 22,2009, Colin and I met the Dr. who said that the Lahey pathologist had found cells indicating that this was angiosarcoma. The results of the follow-up path report from Dana Farber had not yet come back, but we discussed what this meant, but we were on hold until the confirmation came back yes or no. He was not willing to write angiosarcoma in my chart unless it was certain. Not only were we stunned by this, but I think my breast surgeon was too. He has only seen this a couple of times, and then in women who have had prior cancer and lymphedema, never as a primary cancer like I have. We were in the process of giving him the numbers to contact us over the weekend as soon as he got the confirmation from Dana Farber when the call came in confirming the diagnosis. There was a flurry of activity getting me scheduled for an MRI, a PET/CT scan, Chest Xray, and blood work. We went home in a state of shock, called our parents, and then tried to act like nothing was wrong until we decided who we were going to tell and when. I had a mess in my office to clean up, so went back to work to keep my mind busy for a few hours until it was time to pick up Noelle from Daycare.