First Oncology Consult and Oncotype Result

I had my first consult with an oncologist today and I received my oncotype, which typically takes about 2 weeks to get after surgery. Oncotype DX is a genomic test used to determine the recurrence rate in early-stage hormone-positive (HR+) breast cancer.  It works by analyzing the expressions of 21 genes in a sample of tumor tissue.  The score ranges from 0 to 100, with a higher score indicating a greater likelihood of recurrence.  It also helps determine treatment decisions based on the patient's risk.

If a patient's oncotype score is 15 or less, chemotherapy is not likely to benefit the patient and is not recommended.  A score of 26 or higher indicates chemotherapy is likely to benefit the patient and would be recommended.  An oncotype score of 16-25 is a gray area and the decision to do chemotherapy is made on a case-by-case basis.  My oncotype was 17.  There was no mention of chemotherapy until today, so I was a little shook to find that the possibility of having to do chemo was there all along.  

I got four oncotype results:

1. Node negative
• Distanct Recurrence Risk at 9 years = 5% with AI or Tamoxifen
• Chemo benefit = < 1%
2. Node positive (Premenopausal)
• Distanct Recurrence Risk at 9 years = 7% with AI or Tamoxifen
• Chemo benefit = 2.7%
3. Node positive (Postmenopausal)
• Distanct Recurrence Risk at 9 years = 4% with AI or Tamoxifen
• Chemo benefit = None (<1%)
4. Node Postivie (>= 4)
• Distanct Recurrence Risk at 9 years = 49% 😱with AI or Tamoxifen

Although the surgeon and oncolgist think that it's not likely that my cancer had spread to my lymph nodes, we did not confirm it with a lymph node biopsy.  So assuming a scenario where it may have spread to 1-3 nodes, I would fall into category #2 above.  With a chemo benefit of 2.7%, the oncologist didn't recommend chemotherapy for me.

While I escaped the worst of the treatments, radiation and medication (Tamoxifen) were still on the table.  I still did not want to do either of these treatments.  From what I understood, each of these treatments alone would reduce my risk of recurrence by 50%, so not insignificant.  Without Tamoxifen my recurrence rate is ~15% (it was unclear if that was with or without radiation).  My initial thought was that 15% chance seemed low enough.  I also felt as though I'm a fairly lucky person (ignoring the fact that I got cancer).  Then my oncologist asked, "I know you like to travel.  If you had a 15% chance of crashing, would you get on that plane?" Then he went on to tell me how unplesant metastatic breast cancer is.  Breast cancer typically spreads to the bones, lungs, liver, and brain.  Bone cancer may lead to severe pain.  Lung cancer may lead to difficulty breathing and chest pain. Liver cancer would lead to abdominal pain and loss of essential functions by the liver.  Brain cancer can lead to headaches, seizures, and other neurological problems affecting daily function.  All of these would affect a person's quality of life.  I wasn't afraid of dying but I was afraid of living a life of low quality.  Now he had me scared.  While I did not want to do these treatments, I had not ruled them out entirely.  I was going to make decisions on them after seeing the doctors about them.  I had a consult with the radiology oncologist coming up.  The oncologist recommended that I at least do the radiation, and then think on the Tamoxifen. 

Cost of Surgery

My cancer removal surgery was right after my new benefit plan year started so I had to meet my out-of-pocket maximum of $3000 again.  A bummer, but I met that out-of-pocket maximum in one day with surgery and then all healthcare cost after that until next July would be free.  

The claim from the hospital, radiologists, anethesia, and pathology for my surgery was $54,612.  Of that, insurance allowed $28,780.  If I had to pay the full co-insurance on that, it would be about $5,756 but I only had to pay up to the $3000 out-of-pocket maximum.  So, between the diagnosis and surgery, I owe about $5700 out of pocket roughly.  While it's a hefty chunk of change, it is a cost I can fortunately absorb.  I also took advantage of using my Flexible Spending Account and the hospital's interest-free payment plan, which lets me spread payment out over-time.

The above cost included couple of follow-up visits with the surgeon.  There will be additional follow-ups, and potentially other procedures to address some complications from the surgery, that are not included in above.

Anger, Grief, and Stress Management

One of the first feelings I had after diagnosis was not fear, but anger.  I was mad I had cancer.  I was mad that I had to have treatments that would be damaging to me in other ways.  I was mad about living in a society where companies can introduce toxins in our water, food, clothes, and environment for the sake of profit.  I was mad at the influences that led me to an unhealthier diet.  I was mad that work led to stress eating and less time to live a healthier lifestyle.  I was mad at my work's policy surrounding PTO.  I was mad at the costs of getting treated.  I was mad at having to navigate FMLA and disability papework. I was mad I had to give up for a while a lot of things I enjoyed doing like climbing, running, and swimming.  I was just always angry, especially early on.  In addition to being angry, I was stressed all around.  Exercise was usually how I managed stress, but now I needed something more.

I tried couple of things.  The first was Art Therapy.  The Cancer Center where I'm getting treated offers integrative therapies so I signed up for an individual session offered one afternoon.  I just thought creating art would be a nice soothing way to spend some time.  I'm not artistic or do art much, but I like art. I thought someone would guide me and help me make art beyond pre-school level.  I had never been to therapy of any kind and had forgotten that the point of therapy was to discuss your feelings with a therapist.  The session started off with the therapist telling me to draw something specific, like where I want to be if I could be anywhere.  That started off simple enough but then after I finished my drawing I had to talk about it!  I was like crap... I don't like talking about my feelings.  I did anyway since I signed up for it.  There were multiple drawings I had to do, each followed by a discussion.  Part way through, I ended up losing it and started crying.  I guess I had a lot of pent of emotions so once the flood gates were down it just flooded.  The therapist explained I was going through grief over the loss of health and other things in my life.  I needed to allow myself to grieve and be kind to myself.  In some ways, letting out the pent up emotions was good.  I didn't really like the process and what it took to do so though.  I was just glad this was an individual session so I didn't have to cry in front of bunch of people.  While I think it is perfectly acceptable for others to do so, I have difficulty being vulnerable.  I wasn't prepared to do this two days in a row and cancelled the group music therapy I had scheduled the next day. But I do think this session helped.

The next thing I tried was acupuncture.  More on this later.   

I think the thing that really helped the most was taking time off of work.  Even if I enjoyed the work I did, it was still stressful at times, and took up a lot of my time.  Not working has allowed me to rest more, spend more time walking outdoors, and doing other things that brought me more joy.  The stress of treatment remains and stress from work would return when I go back to work. After a while though, I decided I don't want to be angry anymore and let that feeling go. 

Post Surgery Recovery

You are allowed to shower the day after the surgery.  The main restriction post surgery is that you cannot lift more than 10 lbs (about the weight of a gallon of milk) for about two weeks following.  They also want you to wear a snug bra 24/7 for a while to hold everything in place.  

After a few days they encourage you to start walking daily.  I had a membership at the Norfolk Botanical Garden so that became my favorite place to walk.  As someone who hates the heat though, walking outdoors in Virginia summer wasn't always a pleasant experience.  In addition to the garden, there was a nearby park with shaded trails so I walked there quite a bit also.  I walked about 3 miles almost daily.  I also had a membership at the Virginia Beach recreation center.  After about a week or so, I spent about 30 minutes on the stationary bike periodically on days when it rained or was too hot to walk outside.  I don't think I was supposed to just yet though.  

All of the walking had me feeling better, and I noticed I don't stress eat sweets when I am not working. I noticed I was starting to lose a little weight like I wanted.  Overall I felt ok, but I wasn't healing as well as I thought I would.

I had a lot of complications from my surgery.  I had three incisions sites for removal of multiple tissue samples.  Outer left breast, under the right nipple, and outer right breast.  About a week after, I noticed hardness around the two outer incision sites.  I either had seromas or fat necrosis.  The surgeon thinks it's the latter.  Both of these can take months to heal.  Mine are pretty sore, and laying on the sides was not possible.  I fortunately had an adjustable bed base that let me incline the head of the bed up some.  That helped me sleep on my back.  It also helped that I had a soft bed. In addition to the fat necrosis, the incision site around the nipple wasn't healing well. It would seep blood from one edge so I had to put a small piece of non-adhesive pad on it to keep my bra from staining. Something they used during surgery irritated my nipple also and it turned parts of it black.  I was worried my nipple was necrotizing and at one point told a friend I thought my nipple was going to fall off.  It didn't.

Pain for the most part was tolerable.  They give you some reusable ice packs which I used quite a bit the first week.  I only took few of the oxycontin pills they gave me.  It was mostly at night to help me sleep.  The pills make you drowsy and you can't drive while on them so I avoided taking them during the day.  

The first follow-up after surgery is usually about a week.  For a lumpectomy, the average time a woman takes off is two weeks.  Some women go back sooner, others later.  In my case, it was a bit more complicated than the typical lumpectomy due to multiple incision sites, locations of the lumps, and the amount of tissue taken.  I wasn't ready to go back to work after two weeks so I extended my total time off to 4 weeks. During that time I had two more follow-ups due to my nipple continuing to bleed into the third week.  The doctor then told me to put antibiotic ointment on it and that seemed to help the wound heal faster.  

Pathology Report

I got the pathology report back and had my first follow-up about a week after surgery. The surgeon took five tissue samples during the surgery on the 8th:

1. For mass on the left breast near chest wall
2. For biopsy of tissue on the right behind the nipple
3. For the cancer on the right 
4. Additional tissue next to cancer towards the outer part of the breast
5. Additional tissue next to cancer towards inner part of the breast

Diagnosis

1. On the left, there were 3 fibroadenomas (largest 5 mm) and additional benign findings, including two intramammary lymph nodes.
2. On the right behind the nipple, they found sclerosed intraductal papilloma (1 mm) negative for atypia and malignancy.
3. The cancer was as expected (IDC and DCIS).  The size of the tumor was now 1.6 cm.  Did it grow 2 mm in two months?  Or was it just the measurement from imaging being off?  I don't know.  They also found 1 benign intramammary lymph node. The report was hard to understand, but my surgeon says we got clear margins here, which is typically 2+ mm.
• What they previously thought was a satellite site was actually the intramammary lymph node.
4. In additional superior margin, finds were benign.
5. In additional medial margin, they found more DCIS. For this, margins were less than 1 mm.

Based on the size of the tumor alone (< 2 cm), I would be considered stage 1.  But since I didn't do lymph node biopsy, I cannot be 100% certain there has been no spread.  

Given that the DCIS found in additional medial margin didn't have the standard 2 mm margin, the doctor gave me the option to have more surgery to get better margins.  She said that some doctors think it is not necessary to have full 2 mm margins for DCIS, while others may.  I was having more complications than I expected from the first surgery so I couldn't imagine doing this again.  I opted not to have additional surgery.

FMLA and Short-term Disability (STD)

Most women take some time off after surgery for recovery.  In America, some employees are covered by the Family and Medical Leave Act (FMLA) which lets you take 12-weeks of unpaid, job-protected time off for medical reasons.  I also had short-term disability (STD) insurance offered by my company so I used that in conjunction with FMLA.  I didn't understand my benefits that well in the beginning though so I had to spend a lot of time researching and talking to the benefit coordinators to figure things out prior to surgery.  Having to deal with administrative work such as filing claims, paying bills, etc. on top of working and going to numerous medical appointments added to the stress.

There is intermittent and continous FMLA. Intermittent is used if you only need periodic time off of short duration.  Continuous FMLA is used for a chunk of time off with no break in between.  Policies vary, but my STD works only with continuous time off.  There is a 7 day elimination period where you do not get benefits, and after that it pays out 60% of my salary.  So if I took 2 weeks off, I would not get paid the first 7 days from STD but would the second week.  When taking FMLA and not getting paid STD, such as during the elimination period, I am forced to use my paid time off (PTO) by my company if I have any.  Otherwise I would be on unpaid FMLA.  In some states you are protected from having to use your PTO during the elimination period but not mine.  The company will tell you that the policy is in place so you can get paid.  Don't be fooled.  This is just a way for the company to extract more working time out of you once you are back from FMLA.  They don't want you taking vacations after you've just been out on medical leave.  

My company uses Prudential to manage their short and long-term disability benefits.  While it was a little frustrating in the beginning to figure things out, overall, working with them has been a positive experience.  The agents are relatively easy to reach by phone (minimal phone tree input), are polite, and my claims often got approved a lot quicker than the 10 business days they say it can take.  

Surgery

My surgery day started early at radiology.  Since I had additional, unchipped masses that would be removed, the radiologist had to stick wires in my breasts to mark their locations so the surgeon can find them.  Sounds pleasant doesn't it?  I think that was maybe the worst part of the day.  More numbing injections that hurt, and some discomfort as they try to place the wires in.  This took a little longer than expected though because they couldn't find the mass behind the nipple.  In the end, they placed no wire there, but I was told the doctor would still take tissue for biopsy.  After the wires are placed, they do a gentle mammo to get images, and then wrap you up.  Then off to the hospital near by (separate facility) for the actual surgery.

Since surgery is done under general anesthesia, my boyfriend took me to the radiology appointment and surgery.  Once checked in and they got me hooked up to IV in bed, there was going to be some waiting so  I sent him home.  We lived close to the hospital and there was no point for him to wait.  He would get a call once my surgery is done.

I thought I'd go right into surgery but there was a lot of waiting.  They get folks to come couple hours before surgery in case they can get you in sooner.  I guess each operation doesn't go like clockwork.  Lumpectomy of a single mass normally would take 45 minutes, but given I had multiple sites to remove, it took about an hour and a half.  I don't remember a whole lot after the surgery, but they sent me home around 3 or 4pm with some oxycontin for any pain.  I took one after eating a small meal and ended up going to bed pretty early like around 7.  I was pretty wiped out that night.