No News is the Worst News

I keep waiting to post an update until I have something to share, but it appears that may never happen. I guess I better just go with what I know ... which is frustratingly little. I'll put the inadequacies of my cancer knowledge acquisition into categories for your convenience.

Medication:
I've been taking Arimidex for two and a half weeks now, so only 4 years and 50 weeks to go! (Although, they have warned me that by the time we get to the five-year mark, it's probable that the recommendation will be a course of 10 years instead of a mere 5.) Apparently early results of several studies show that an additional 260 weeks may be beneficial. We shall see. 

I'm managing it fairly well at the moment. The first week was tough. I was so weak and tired that I had a hard time walking down the hall to the copy machine. During a team meeting one day I started upright but became progressively slumpier (it's a word. I just coined it.) as the discussion progressed. By the 40-minute mark, I had morphed into a sea cucumber sporting business casual and testing the limits of my ergonomic chair. They sent me home. It was probably a good choice. 

DEXA Scan:
Monday, I had a dual energy X-ray absorptiometry test to get a base line for my bone density. It was no big deal, unlike some of the other scans I have had involving contrast dye or I.V. radioisotopes. I was not told that I could not fly after my DEXA scan for fear of setting off metal detectors with my very self. So, that's good, I guess. 

What wasn't good was that the technician seemed to be a non-sensical mixture of an adult and a hyperactive toddler. She threw her arms up to accentuate a loud "YAY" upon learning that I had not accidentally swallowed any calcium or antacids in the last few hours. I was startled. 

Then, after I was changed and ready to go, she inquired with entirely too much excitement for the occasion: "Are you ready to play?" 

I wasn't, but it seemed rude and possibly ill-advised to say so. 

The test was fine, but I didn't really have fun, which is the point of play as far as I understand it. So, I guess she isn't really that good at her job.

Radiation:
To radiate or not to radiate, that is the question. The answer remains elusive. We haven't heard back from radiation since my last post. As a review, it's up in the air, based on several things but mostly a second opinion from the Mayo Clinic. Hopefully that feedback will come soon. 

Genetics:
We met with a genetic counselor on the 12th. She was very nice and spent a long time explaining genetic code, mutations, variants, sequencing, chromosomes, and all other things I have forgotten since high school. Genetic testing on cancer cells can help determine why cancer occurs and if it poses a risk to others in the family. There is a high chance that we will learn something really helpful, like I was born with a predisposition for cancer or I have an acquired gene mutation that caused my cancer and may continue to encourage abnormal cell growth. I'm pretty curious to see a report card on my cells' delinquencies. 

Unfortunately, there is a lot of paperwork and arranging before the test can take place. So, although we spoke to her two weeks ago, I don't go in until this Friday to have the blood drawn for the testing. Once that is done, the sample will be sent to Utah visit a lab and possibly go on a hike in Zion National Park. We won't hear anything back for about a month ... presumably because climbing to the top of Angels Landing is terrifying and my blood might need a couple of tries to work up the courage.

Chemo:
I hate this part of the story. I still don't know if I'm having chemo. We're waiting on the results of a test called Oncotype DX. This report will tell us both the likelihood of recurrence of my specific cancer as well as the extent to which that recurrence percentage would be affected by chemotherapy. I was supposed to get this information last week. Then I was supposed to hear yesterday. Spoiler alert: I do not have the oncotype results. 

To be fair, I did talk to the oncology office yesterday. Unfortunately, what they told me was not the results of the test. Instead, they shared that there had been a snag between the lab and the insurance company. This resulted in a three-week lag during which time nothing had been accomplished at all. Naturally, I was delighted. 

I have been assured (and I obviously trust every medical detail that I'm told) that it shouldn't be another three week wait and that answers are imminent. I remain unconvinced. 

A Quick Radiation Update

Scott and I met with the radiation oncologist today. He was awesome. 

We conversed. We laughed. I cried ... twice.

Once again, there is a lot to report, but the short version is this:

• Radiation is the standard treatment for a recurrence of breast cancer. 
• If we do radiation, he recommends 25 sessions, plus a 5 session boost at the end. 
• If we do radiation, the sessions would be 5 days a week for 6 weeks.
• If we do radiation, we would start this summer, because of timing. It takes 1-2 weeks for the mapping/planning phase and you can't have any breaks in treatment. We have a vacation planned for June, so the planning would happen before the trip and the treatments would start as soon as we get back. 
• If we do radiation, I can expect to be tired, sore, maybe swollen, feel sunburned, maybe blister, probably have skin discoloration across my chest, into my armpit, and up on my neck. Also, about 30% of the patients have constricting around the implant that would require surgery.
• Because of the lupus, all of these side effects, particularly the blistering and the likelihood of surgery, are increased.
• Because my cancer in 2010 was a stage 1 and the cancer this time is a stage 1, the need for radiation isn't so clear. Both times it was a small, slow-growing, early discovered tumor. 
• Because I was so young with my first cancer, this indicates that radiation could be important.
• Because I'm still young now, this indicates that radiation could have late-developing side effects many years down the road and should be avoided. 

So, it's all debatable. It's ultimately up to me, but the doctor said there is both a good reason to do radiation and good rationale for skipping it. 

I'm VERY uncomfortable with doing nothing. As much as I'm unhappy about the potential side-effects of both radiation and chemotherapy, I feel like doing neither will leave me incessantly anxious, waiting for the cancer to return. 

As a result, today's doctor put in a request for the Mayo Clinic to review my case. They will look at both the pathology from 2010 as well as that from 2022. They will look at the oncotyping of both tumors. And, since it was at the Mayo Clinic that the initial lupus diagnosis was made, they will be able to review all of that lab work, as well. Within the next few weeks, we should hear back from them.

In the mean time, he also got me in to see a different medical oncologist. I explained my displeasure about Wednesday's visit and he just took care of it. So, that gives me relief. 

I wish that I knew what lies ahead, but at least now we have a partial plan for a DEXA scan, genetic counseling, another medical oncologist, and oncotype dx testing. Oh, and we picked up my prescription for the oral chemotherapy drug, too. 

So, that's my Friday. 

A Visit to Oncology: The Good, The Bad, and the Ugly

We met with the medical oncologist today. It was okay. It was SUPER frustrating. It was sad. There is much to report, but also much that remains unknown. I am trying to process everything and writing it all down seems as cathartic a response as any. So, without further ado - my Wednesday in evaluative thirds:

Good:
My current cancer is strongly responsive to estrogen (97%) and moderately to progesterone (64%).

Good:
I'm post-menopausal, thanks to the hysterectomy and oophorectomy of 2010. Therefore, I'm eligible for a course of Arimidex. Depending on if you prefer scientific or generalized internet writing, Arimidex can either be considered an aromatase inhibitor or hormonal chemotherapy. It's an oral medication to prevent the cancer from spreading and I'll take it for 5 years as an initial treatment and then a possible 5 years more after that. 

Bad:
The Arimidex won't make me lose my hair, but the main side effect is joint and bone pain. It can cause bone loss, which I learned is called osteopenia. Disappointingly, it's not the result of the spell that Gilderoy Lockhart casts to mend Harry Potter's broken forearm after a particularly nasty quidditch spill. That's something else entirely and it requires a medication called Skele-gro which no one even offered to me. 

I'm scheduled for a DEXA Scan, which stands for dual-energy X-ray absorptiometry. It will give us a base line for how strong my bones are or aren't so that we can monitor their porosity. Bones are supposed to look like honeycomb under the microscope. If mine look more like nerve synapses then we become concerned (or kind of impressed)? If I start breaking bones from sneezing or sitting down too aggressively, then I guess we have a problem.

Ugly:
My oncologist told me that I should institute a low carb diet for the next five years, as Arimidex has a tendency to make women gain weight. 

"How much?" I asked. 
"Do you really want to know?" he answered with a grimace.
"Yes."
"10% is the average. It could be less ... but it could be 20%." 

Come on! I don't want to tell you my weight, but I will say that 10% is not a negligible 5 pounds. It's significant. I told the doctor that I wasn't interested in gaining 10% of my body weight. He didn't seem to think that my objection would make a difference to the medication. 

Good: 
The invasive ductal carcinoma is grade 1. That is the slowest growing type of cancer.

Bad/Good:
There was also some DCIS (ductal carcinoma in situ) in the sample. DCIS is considered a grade 0 and is sometimes called pre-cancer. If left untreated, it will become invasive cancer. Some of that was found and was removed during the surgery. Is there more still hanging out in there? Unknown. 

Ugly:
The pathology report says that the "gross description" of the sample is "4 Fibrofatty core biopsies." That's just mean. I like French fries. I can't help it. Don't pick on me.

Ugly:
I don't want to be rude, but the lab report says that my case was "seen in consultation with Dr. Lundberg." I didn't meet Lundberg, but her/his name sounds suspiciously like Lumberg, who is the villain from the movie Office Space. I'm concerned. 

Bad:
The oncologist I saw today is not the doctor that I had in 2010. I loved that doctor, but he moved out of MN, I think back to his native country of Germany. For the last several years I have been seeing this other oncologist who is fine, but not the same as the guy who held my hand through the misery of Cancer 1. I see him once a year for follow-up and have always considered him to be acceptable. Today, he was notably sub-par. 

He asked me if I just had a mastectomy. "No. I had that 12 years ago."

He asked me about the lymphadenopathy and lymph surgery that I had in 2014. "That's when Dr. Petryk thought I had lymphoma, but it was later determined to be lupus."

He asked me if I am post menopausal. This was the killer.
"I had a mastectomy in 2010." (I pointed to the medical-gibberish on the computer that I have learned to decode.)
"A mastectomy doesn't mean that you are post-menopausal."
"An oophorectomy does. I had an oophorectomy in March of 2010. It's right here on the screen."
"Ooh. You're right. That's exactly what it's called when they take out your ovaries."
Me (in my head): "I KNOW! I'M NOT AN IDIOT. SHOW ME THAT YOU ARE NOT AN IDIOT OR WE ARE GOING TO SEE IF I STILL KNOW HOW TO DO TAE KWON DO."

I do, by the way. I have nun chucks and am not afraid to use them on anyone ... or on cancer.

Good:
Because I have had cancer twice and am young (medically speaking), it is concerning. My oncologist wants to do genetic testing on my healthy cells to see if there are any answers hidden in my DNA. The tests will tell us if there is possibly a genetic mutation with which I was born or some other reason that this is happening. His exact words were: "You're too young to have already had a cancer and a recurrence. Something is not right."
I agree.

Good:
The oncologist also ordered oncotype DX testing. This is a detailed look at the cells of the cancer tumor to determine several things, most importantly among them is the benefit that chemotherapy would offer to my specific cancer. I had this done in 2010 and the result fell into the intermediate category.  In 2010, it was determined that chemo wouldn't be beneficial. This time, we will see. I won't learn that until early June when I go for a follow-up appointment.

What else? Oh, right. Laila and Owen got hit by a semi truck this morning on their way to school. It was a low speed impact. They are both okay. The car is likely totaled. 

I guess that's it. I'm going to finish the trashy reality tv show I'm half-watching and go to bed. Tomorrow is a regular work day and then Friday is 2 hours with radiology. So, more to come I guess. 

Thanks for your support.

Liz