Wednesday, June 20, 2012

The Decision

The past few weeks I have had a heavy heart and mind as I struggled to make a decision - unilateral or bilateral mastectomy. Normally, it's not difficult for me to make a decision, but I struggled and struggled...I prayed to God that he would give me an answer, give me a sign on what to do, or reassurance I will make the right decision as either option just didn't feel "right". I had decided to get a second opinion from an oncologist as I only wanted to understand better where Heyer was coming from. It is NOT that I did not trust him because I do, but I just simply needed more reassurance. I have connections with Dr. Sandy Swain, but she was unavailable to talk to me as she is traveling the world for her new position. I was referred to another office. I received a call quickly, but from a very rude woman.  The conversation pretty much went like this:

Lady - "Can I speak to Jennifer Campbell this is __ calling from __ office"
Me - "This is she"
Lady - "First of all, what insurance do you have?"
Me - "Blue Cross Blue Shield"
Lady - "Second of all, we do not make an appointment without having your records on file."
Me - "Well, I can have my records within in a few days. Can I please make an appointment as my surgery is the 28th"
Lady - "NO, absolutely not"
Me - "Well, how long can I get an appointment once you receive my records?"
Lady - "It depends on when I receive your records"
Me - "Ok. Well, what if you get my records on Monday. How soon?"
Lady - "We are looking at the end of June"
Me - "Seriously? That doesn't really help me"
Lady - "Well, that is our procedure"

I just pretty much hang up.

I receive a call this Monday from the surgeons office asking where I need my records sent and I explained that I can't get an appointment. I tried to ask the girl if it's possible Dr Chiantella can speak to a fellow oncologist about my situation and get his/her opinion. The girl could not understand what I was trying to ask...She asks me to hold on and then then Dr Chiantella gets on the phone. I quickly asked her if it's possible and she said - it's a good idea but she can get me into another office. I thanked her and immediately called her referral and could not get an appointment until next Wednesday (day before my surgery). On Tuesday morning, I receive a call from Dr Chiantella asking if my ears were burning. I explained no because in a half hour I am scheduled to see Dr Heyer and am focused on getting through that appointment. She proceeded to tell me that she had a Breast Board Meeting that morning with the following individuals (I think I have to the ratio correct):

2 Oncologists (Not Heyer)
3 Radiation Oncologists
1 Radiologist
3 Breast Surgeons
2 Pathologists
1 Plastic Surgeon

She brought up my situation and said it was "A VERY lively discussion, but they ALL came to a consensus. Drumroll please....

Lumpectomy with Radiation

I know...I know...I know...I was like - wtf. Are you serious? However, believe it or not I got a sense of peace when she told me. I really can't explain it, but I decided to keep quiet and hear her out.

A lumpectomy with radiation has pretty much the same statistical reoccurance rate as a unilateral mastectomy, but a lot less invasive, risks, and recovery. According to Dr Chiantella, they are evolutionizing this treatment plan because there is none set in place but to feel safe knowing there was much thought put into this decision factored by very brilliant doctors specializing in all fields related to my case. They will not remove my lymph nodes since radiation will kill any residual cancer cells, but they will remove and test my breast tissue for residual cancer cells. First, I need a MRI so she can study my breast and analyze my tissue, margins, and lymph nodes.  Hopefully, the MRI will reflect what she "wants" to see and there would be no issues in proceeding with this plan. I simply said "ok". I think this shocked her and honestly it shocked me - I couldn't believe I just said "ok - sounds good". I obviously had many questions which she answered. Once we hung up she was going to call Dr Heyer to explain before my appt at 9:15.

9:15am - Well, it was actually like 9:30 because I got stuff in traffic. You have to love NOVA traffic - ugh!
Kwiatek accompanied me to my visit to take notes and more importantly catch me if I really do faint or have a class act meltdown. Dr Heyer entered the room and immediately asked if I spoke to Dr Chiantella and I said, "Yes" and asked "What do you think?". I held my breath and crossed my fingers - he agreed. I thanked the Lord above.

We had a great appointment. He pretty much apologized for the scaring the living crap out of me a few weeks ago because that was not his intention - it was supposed to be a good appointment, but he knew it was not going so well by my reaction (I'm really not sure what gave it away).

Anyhow, Kwiatek and I bombarded him with questions and he answered every single one of them without hesitation. I explained my uneasiness about not removing the other breast and he explained -

1) Removing the other breast does not increase life span
2) It's usually an emotional decision than a medical decision because the woman just wants it to be done with and behind her
3) Cosmetic

My risk of developing cancer in the other breast is low, but he told me since I will be monitered very closely that if something did pop up then it can be taken care of quickly. Ok - well that makes sense...never thought about that.

He emphasized that his job is to think of the worst..not saying it is going to happen but he has to think that way. I truly understand this reasoning, but it still doesn't make it any easier to hear it.

I brought up the idea of low dosage chemotherapy and told him I will do it. He replied that he didn't even confirm I needed it. I told him it's ok - just give it to me. I would feel better. He didn't agree. What he means by low dosage of chemotherapy is this..

When someone receives chemo for treatment then usually it's more than one type of chemotherapy. For example, I had taxotere and carboplatin. He was thinking that it would be wise and the right choice to give me taxotere as a maintenance drug. It would be weekly for 3 weeks and then 1 week off. I ask - what are the side effects he briefly spoke about. He said with taxotere it's primarily ugly nails. Maybe fatigue but that is hard to gauge. It does not affect my hair follicles, so I will still have hair.  Really the issue is it wears people down - mentally. I ask how will he ever know if I am in remission and he said that I am in remission, now and it very well could stay like this but again - he nor anyone else could say for certain. He told me that we aren't at the point yet to discuss a low dosage of chemo because he wants to know my MRI results and then pathology report because all this will determine next steps.

We left this time laughing - I apologized for overreacting, but I was a woman and it's expected we get all emotional. He should understand. He agreed and said men are so much easier to deal with because they just nod their head and pretty much agree with anything.

At this point, I am waiting on my MRI to be scheduled. Dr Chiantella needs to speak to my insurance company. Hopefully, it's this week to allow her time to review and analyze before surgery next week. I did have Laurie, breast care nurse navigator, from the hospital call me on Tuesday to just talk and let me know she was in the meeting that morning to which she said was one of the more interesting meetings ever. I should be at ease knowing all agreed and had my best interest at heart. She said a lumpectomy doesn't require an overnight stay and a lot of people do great the day after. I would probably only have 1 - 2 weeks recovery time. I admittedly was looking forward to 6 weeks off from work only because I had a lot planned during my down time, but hell - I am NOT complaining.

In summary, I'm assuming my intuition was leading me down the right path all along. I was struggling with a decision because maybe I knew or God was telling me there is a better plan. If I weren't persistent and stubborn then I would still be making myself sick with worry and undecided.

I'll keep everyone updated :)

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