Cost of Diagnosis and Insurance

Everyone knows healthcare costs in the United States is expensive.  It is difficult to fathom the financial hardships that folks with serious medical issues face without good insurance.  I feel fortunate that I had reasonable insurance through work.  My plan was Anthem Blue Cross Blue Shield's High PPO plan.  Despite having coverage through the VA, I opted to maintain health insurance in the private sector since I was unsure when I may need more care than what the VA can offer.  (Note: My health insurance was registered with the VA so if I did receive care with the VA, they would bill my insurance to recoup costs.)  The plan deductible was $500 with an annual out-of-pocket maximum of $3000 for in-network services.  For out-of-network, the deductible is a separate $750 with out-of-pocket maximum of $4500, but I don't recall ever having to use out-of-network services.  My coinsurance was 20%.  The main downside of my plan was that the benefit year went from July 1 to June 30th instead of the more common January 1 to December 31.  The timing was such that the diagnostics and treatments would span two benefit years, causing me to hit out-of-pocket maximum twice.  Once you hit your out-of-pocket maximum though, the plan pays 100% of covered services thereafter. 

Although the cost likely varies between hospitals and whether or not you have insurance, I thought I would provide a sample of what the doctors would bill the insurance.  This post covers the cost of just the diagnostics performed since May.  Between May and June I had 9 total visits that included the initial mammogram, follow-up mammogram, ultrasound, MRI, and surgical consults.  A total of $36,207 was billed to my insurance. The insurance in-network contract allows $11, 234 to be billed for those services.  I paid $1671 between copays and coinsurance.  The most expensive service was the biopsy which came to $959 out-of-pocket for me.  Between the hospital and radiologists, over $10,000 was billed to the insurance for the procedure that took about an hour.  If you look at the claim details, one of the line items was treatment room and observation for like $4000.  My thought was "what observation"?  They sent me right home after the procedure.  Out of curiosity I asked the billing department of the hospital about this line item.  Their response?  "We bill that because we can."  One of many reasons why health insurance costs so much in the U.S.

Although health care can be expensive, the Affordable Care Act (ACA) requires most private health insurance plans to cover recommended preventative services without any out-of-pocket costs.  If you have insurance, your annual mammogram (if over 40) should be free to you.  If you do not have insurance, organizations like National Breast and Cervical Cancer Early Detection Program (NBCCEDP), Planned Parenthood, and Susan G. Komen Foundation can help women find financial assistance or programs that cover the cost of screening.

For those of you on the market for insurance or considering a change in plan during open enrollment, there is a lot to consider.  Those who are young and healthy could do well with a high-deductible health insurance with Health Savings Account which offer triple-tax advantage (tax-deductible contributions, tax-free growth, tax-free withdrawals).  Health Maintenance Organizations (HMO) usually offer lower cost premiumes but with some restrictions on who you can get care from (i.e. only in-network).  Preferred Provider Organization (PPO) costs higher, but offers more flexibility in which doctor you can see.  There are also different levels of each type of plans usually, with the most expensive option usually having lower copays, deductibles, co-insurance, and out-of-pocket maximum.  Insurance options vary by employer and state marketplace.  Everyone's needs are different, but I would encourage anyone without medical insurance in the U.S. to find coverage at the next opportunity.  No one expects to get seriously hurt or sick but if you do, you want to be able to get the best care possible without worrying about going bankrupt.  If your employer does not offer insurance, check out healthcare.gov to browse plans and costs.

Telling People

The first person I told my diagnosis to was my live-in boyfriend.  It was simple and there was no drama since the prognosis was good.  If it was the other way around I probably wouldn't be anymore worried than he was.  I'd probably been more worried about whether he could stay on top of his appointments and finances. 

The day after the diangosis I rode with my brother and his wife to visit my other brother several hours away for a long weekend.  We were visiting for our niece's high school graduation.  I thought about telling my brother and wife on the way there but it didn't seem like a conversation to have in a car.  I knew I wasn't going to mention this once there since it was meant to be a celebratory weekend. I couldn't bring myself to tell them on the way home either. It took me about 3 weeks after diagnosis to tell my brothers and dad.  I wanted to have more information like the surgery date before I told them.  My mom thankfully lives overseas so I did not have to burden her with the bad news.  She would just worry so I chose not tell her.  My brothers, their families, and dad took it well.  I know they are there for me if I need anything, but there really wasn't much that I needed, and what little I did need my boyfriend could step in.  

Telling some friends seemed easier than telling other friends. I am not sure why.  One of the first friends I told was one who had a family history of breast cancer.  I think I wanted to know what she knew since I knew nothing about breast cancer when I was diagnosed.  I told another friend who had a history of another type of cancer.  There I think I was seeking to connect with someone who have been through something similar.  I also told friends I saw in person regularly since I wanted them to understand if I could not hang out like before. I told few others who were remote if they ask how it's going or how I'm doing.  There are some friends I feel like I should let know, simply because they are good friends, but I didn't.  I had mixed feelings about telling friends.  Partly because I didn't really know what good it would do other than to serve as a reminder to get their screenings.  Partly because I didn't want to worry people.

Work wise, I decided to tell my boss once I had a surgery date.  I asked him to let the rest of the team know while I was out as I didn't think I could talk about it in front of the team.  I had been doing really well at work and had so much potential in this new team that I had just joined in March of this year.  Unfortunately, this diagnosis was likely to change my ability to operate at the same level as before, and I wanted to set expectations.  

  

Second Surgical Consult

Although I had a few telephone calls with the surgeon since the initial consult, I decided to go see my surgeon in person again to discuss my surgical plan.  I wasn't entirely sure what was happening.

Since biopsy of the two new masses could potentially be inconclusive, it was suggested that they would just remove them along with the cancer that had already been identified.  I agreed.  Even if they were benign, I've had a few cysts elsewhere in the past that got infected and needed surgical removal.  I don't want any surgeon not specializing in breasts to have to do any sort of emergency surgery if something like that were to happen in my breast.   

What I couldn't agree on was the lymph node removal under the arms on the right.  Standard practice for lumpectomy (and I think mastectomy) is to identify the sentinel nodes (the first nodes in the lymphatic system that the tumor is likely to drain into) and remove them so that they can determine if the cancer cells have spread there. If so, the treatment plan could change. Typically there's 1 to 3 sentinel nodes, but there could be more. The surgeon couldn't tell me exactly how many she was going to take. I was very concerned about the lymph node removal because of the increased risk of getting lymphedema.  I had grand plans in my life and didn't want to worry about every animal scratch or bug bite on my arm causing lymphedema. Just like I didn't want radiation or meds, I didn't want lymph node removal.  I was going for the minimally necessary approach.  There was also the chance that if the left mass turned out to be cancer, I would have to go back in for lymph node biopsy on that side.  I figured if the left mass was cancer I'll go back for lymph node biopsy on both sides.  The doctor wasn't thrilled, but she agreed not to remove it during this surgery.  However, if my oncotype came back high (20+), she said I should come back for the biopsy regardless of what's going on in my left breast.  I didn't know what an oncotype was but I said ok. 

So, the final plan was to remove 4 masses:

• The cancer (R)
• The suspected satellite mass near cancer (R)
• The mass behind the nipple (R)
• The mass near chest wall (L)

Genetic Testing

My surgeon asked in our first meeting if I would like to be tested for the breast cancer genes.  This isn't something that is automatically done since insurance does not always pay for it, and there is a risk that in the future genetics could be a factor in your insurance coverage or premiums.  I think knowing is quite important though so I chose to do it.  The results take about two weeks and I got mine today.  I had no family history of breast cancer, so I suspected it would come back negative, and it was a relief when it did.  If it had not, I may need to reconsider my treatment, such as doing a full mastectomy instead of partial.  It was also good to know it was something my three nieces wouldn't have to worry about.  New genes linked to breast cancer are periodically identified over time, but given today's knowledge it seems we're in the clear.

See https://www.breastcancer.org/genetic-testing for more information on breast cancer genetic testing.

Pathogenic Mutation(s): None Detected
Variant(s) of Unknown Significance: None Detected
Gross Deletion(s)/Duplication(s): None Detected

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SUMMARY

NEGATIVE: No Clinically Significant Variants Detected

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INTERPRETATION

• No pathogenic mutations, variants of unknown significance, or gross deletions or duplications were detected.

• Risk Estimate: low likelihood of variants in the genes analyzed contributing to this individual's clinical history.

• Genetic counseling is a recommended option for all individuals undergoing genetic testing.

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Genes Analyzed (77 total):

AIP, ALK, APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDC73, CDH1, CDK4, CDKN1B, CDKN2A, CEBPA, CHEK2, DICER1, ETV6, FH, FLCN, GATA2, LZTR1, MAX, MEN1, MET, MLH1, MSH2, MSH6, MUTYH, NF1, NF2, NTHL1, PALB2, PHOX2B, PMS2, POT1, PRKAR1A, PTCH1, PTEN, RAD51C, RAD51D, RB1, RET, RPS20, RUNX1, SDHA, SDHAF2, SDHB, SDHC, SDHD, SMAD4, SMARCA4, SMARCB1, SMARCE1, STK11, SUFU, TMEM127, TP53, TSC1, TSC2, VHL, WT1 (sequencing and deletion/duplication); AXIN2, CTNN1A, DDX41, EGFR, HOXB13, KIT, MBD4, MITF, MSH3, PDGFRA, POLD1, POLE (sequencing only); EPCAM and GREM1 (deletion/duplication only).

Abnormal Pap Smear

There are a lot of doctors appointments when you have cancer.  That doesn't mean you stop seeing your other doctors for non-cancer issues.  I still go to my bi-weekly appointment to get allergy injections.  I also had my first cervical cancer screening (pap smear) in 3 years scheduled for today and I did not want to put off this screening. Unfortunately, the result came back abnormal. It's bad enough I already have one cancer.  The last thing I needed to hear was that I may have another.  The gynecologist tried to ease my mind by telling me an abnormal pap smear does not necessary mean cancer.  Follow up biopsies of the cervix and endometrium fortunately did come back negative.  Still, I have to wonder why the pap smear came back abnormal.

It seems to be common for those who have had cancer to worry that any new pain or discomfort is a recurrence or another cancer.  My boyfriend jokes that I've turned into a hypochondriac.  Breast pain in new location? Must be another cancer brewing.  Pulled calf muscle?  Maybe I have a tumor growing there.  Knee pain?  Back pain?  Headache?  Abdominal pain?  Cancer. Cancer. Cancer. Cancer.  You know it is more likely to not be cancer, but once you draw the unlucky straw of having cancer once, it's always going to be on your mind.  I hope in time, after I regain health and stay healthy a while, the anxiety will lesson.

MRI

The surgeon wanted to do an MRI prior to surgery to make sure nothing was missed in the mammogram and ultrasound.  For breast MRI you lay face down and only your chest is scanned.  It wasn't a big deal.  I was told I could turn a hint of blue over the next 24 hours from the contrast dye but that didn't happen to me. Unfortunately though, the MRI found something.  I had a small mass next to my chest wall in the left breast and another small one behind the right nipple.  Is the one behind the nipple the same breast cancer or another?  It seemed unlikely that the cancer on the right would jump all the way to where it is on the left, so if it was cancer, it would likely be a new one.  Great. Fantastic.  Potentially more cancer.  Argh.  The ultrasound tech who further examined those masses seemed optimistic though that they were benign.  No way to know for sure without a biopsy though, and the location of the masses would make biopsy difficult and/or painful.  

 

First Surgical Consult

Surgeon: "Do you know why you are here?"

Me: "Because I have breast cancer."

Surgeon: "Good.  Not everyone understands they have been diagnosed as cancer."

I guess it doesn't surprise me that not everyone goes into their first consult with a solid understanding that they have cancer.  The lab results aren't easy to understand.  I had to google all the key words to put the picture together.  By the time I got a call about my biopsy results I already figured I had cancer.  I can also imagine that even if someone was clearly told they had cancer, that one could be in some sort of denial.  

After ensuring I knew I had cancer, the surgeon went on to explain a number of things about breast cancer. Not really knowing anything about breast cancer, I found the information helpful, though it was a lot to absorb.  I had both lumpectomy (aka partial mastectomy) and full mastectomy as an option. It seems there are many women who are keen to get their boobs chopped off upon finding out about their diagnosis. I was not one of them.  I like my boobs.  I don't want fake boobs and I wasn't ready to lose the ones I have.  I had no doubt I wanted a lumpectomy.  The doctor also explained that the rate of death is the same either way.  With lumpectomy, there is a higher rate of recurrence since we are leaving breast tissue behind.  With mastectomy the chance of recurrence is lower, but not zero. However, since there are no regular mammograms or screenings after, by the time someone gets a diagnosis of a recurrence, they are already in more advanced stages of the cancer.  

The surgeon also explained to me about the standard treatment course for my type of breast cancer.  After surgery there would be radiation treatments, followed by medication to prevent hormones from feeding cancer.  The radiation treatment is intended to kill remaining cancer cells in the breast.  The medication is to treat cancer systemically to prevent metastasis by starving the cancer cells.  Everything I've read up until now on these treatments sounded like there could be many unpleasant side effects.  I didn't want to do either of these.  I just wanted to do the surgery.