Option 1 and Option 2

I am besides myself right now, so much so that I can’t even say this out loud – I am only writing it here. There is a report in my medical portal from the biopsy of my abdomen yesterday. Although there is no pathology, these words are crystal clear:

PRE-PROCEDURE DIAGNOSIS:  Breast cancer
POST PROCEDURE DIAGNOSIS:  Same.

Now, I think this is actually the coding they use in order to justify the need for the biopsy. There is no pathology, like I said, and lower down on the page, it says:

SPECIMEN:  3 14-gauge core biopsy samples were submitted.
FINDINGS:  
IMPLANTS AND MECHANICAL DEVICES:  None.

See how that “Findings” section is empty? I think that is where they will put the pathology. But in prior biopsies I’ve had, there is a statement at the top or somewhere — anywhere —  that says something about pathology to be added in an addendum. I mean, it would be strange for there to be a diagnosis this quickly – pathology requires staining of the samples that have to sit over a period of time. It hasn’t even been 24 hours. But there is no mention of an addendum to be added. And, “DIAGNOSIS: BREAST CANCER” is not what I like to wake up to first thing in the morning. I emailed Dr. McAuliffe. My guess is she will tell me exactly what I’ve just written. Still, I am officially terrified.

Second, after my meeting with Dr. Gimbel yesterday, I am torn about what kind of surgery to have. Here is his after-visit summary, which does a surprisingly good job or relaying our conversation:

Considering 2 options:

– One is wide local excision alone through an elliptical incision laterally on the right breast. I drew out a radially oriented ellipse overlying the mass and took a photo to provide for Dr. McAuliffe for recommendations on how to oriented designed this excision, taking the flap into account.

– The other option would be wide local excision in combination with removal of her bilateral breast flaps. She feels strongly that she does not want any more surgeries and is concerned that radiating the right reconstructed breast will significantly alter its appearance, creating asymmetry and potentiating the need for additional revisions of her breast reconstructions. She is hoping to be done with surgery on her breasts as she has gone through a lot already.

So, yeah – Option 1 (remove the lump) or Option 2 (remove the breasts). To add a little more detail to Option 1, Dr. McAuliffe’s excision will already remove a significant portion of that breast (probably a bit more than 1/4 of it). Then radiation could shrink it even more. I am not a very materialistic person – anyone who knows me will tell you that I probably should give a lot more shits about the way I look (put on some makeup? comb my hair?) – but I am pretty OCD about a lot of things, and I know that having two very different breasts will drive me absolutely crazy; I can see wanting to have a second surgery to even things out. But this surgery coming up will be my FIFTH related to this situation, and I am absolutely not having any more surgery after this unless it is to save my life. So I have to make a decision now that I’m going to be able to live with.

Of the two breasts that Dr. Gimbel made for me in 2013, the nicer one is the one that’s going to get wrecked here. The one that will remain in-tact has always had this weird pinched skin around the aureola that has always bothered me a bit. I think I’d rather not have any breasts at all than have one breast I never liked and one that’s going to be half the size of that one. Of course, the key word in there is “think.” Because I don’t really know; even though the idea of living with a flat chest is kind of tempting, I’m not sure what the actual skin will look like, and it could be a scary mess (he’s also said it could be concave – not necessarily flat – although he’d do his best). But once he takes them off, there’s no going back. I do know Dr. Gimbel’s work, and I am pretty confident he’s going to make sure it looks good. Still, this is a really hard decision, and despite talking it over with my husband last night, I feel like there is no one who can help me make it.

This afternoon, I meet with the radiation oncologist to discuss if there is a radiation therapy benefit to one option or the other. Then I will need to make a decision so we can get this surgery scheduled already.

 

It’s My Cancer, and I’ll Cry if I Want To

I’m having one of those days again where I just want to cry. Or go back to bed. It began this morning with the biopsy of the “hot spot” on my abdomen – the one that showed up in the PET scan but is most likely scar tissue. From the time I got to the hospital for bloodwork until the end of the procedure, it took almost three hours. Through most of it, whether I was laying on the gurney while the nurse took my vitals, or I was in the procedure room watching on the screen as the needle pierced the empty space of the “lesion” (as the called it), I kept feeling my eyelids grow heavy with the familiar feeling of depression. When my mom dropped me off at home when it was over, I wanted to get back in bed. But I didn’t, because I am scared that if I do I might not get out. I’ve been in that place before; the last time was after I gave birth to my son. I can’t go back there now when he’s old enough to watch and ask questions.

So instead I started going through my emails, and crying.

I noticed I had two emails from Dr. McAuliffe’s nurse – one with an appointment for tomorrow with the radiation oncologist, and one on Thursday for pre-op screening even though I don’t even have a surgery date squared away. So I have six doctors’ appointments in four days this week (including one with my son’s therapist, which is, pretty much, harder than having one of my own medical appointments). And, I have two pretty big work deadlines coming up on Friday. Have I mentioned that since I felt that lump in the shower over a month ago, I have done zero work – ZERO. The only work I have done is pity myself, and that has not been super productive. But I guess I’m supposed to keep powering through; somehow I get up each day this week, kiss my son off to camp, go back to the same hospital and talk to yet another doctor and get stuck in the arm by yet another needle, and come home as if nothing ever happened.

I feel like we are being asked to power through a lot right now. Our dog is eight months old – a “teenager” so to speak, and although he was quite nicely trained a month ago, he is suddenly acting like an out of control maniac. People who have owned golden retrievers tell us to “power through” this phase – it’ll be so much better on the other side. But every time he jumps up on someone (nearly knocking them to the ground), I want to cry. Our son is going through an intensive treatment for encopresis. He’s fine, but it’s been hard on my husband and me, tracking his medicine, his bathroom visits, and getting up late at night and early in the morning to help him re-train his bowels and bladder after years of misuse and nerve damage.  I’m in a facebook group with other moms who keep saying the first month is the worst, and I just have to “power through” it – it’ll get better, but I cry about it, a lot. My husband continues to mourn his father, each day another phone call or document to deal with, a stressor at work about something he missed while he was gone at the funeral – but he’s powering through so he can be supportive for me. And he shouldn’t have to do that. Powering through is bullshit.

But there’s no real choice. In ten minutes, I will get up from this corner of the couch where I’ve allowed myself 15 minutes of self-indulgent whining to write this blog post, I’ll get back in the car, and I’ll take myself to see my plastic surgeon. We will discuss the pros and cons of wide local excision (or, removing only the tumor, aka lumpectomy if this were an actual breast) vs. taking down the reconstruction (removing my reconstructed breasts and being flat-chested, aka mastectomy if these were actual breasts). I will need all the power I can muster to make that decision wisely, and through all of my crying and whining, I don’t know how much I have anymore.

 

 

Here’s the Plan, Man

Dr. McAuliffe called yesterday morning to tell me about the conversation at the multi-disciplinary oncology conference. There were four medical oncologists there (including the head of breast oncology), and my plastic surgeon who hopefully does not hate me.

First, they discussed the origin of the cancer, whether they thought this was a new cancer or a recurrence. Because there was so much DCIS in my breast in 2013, they suspect this is a progression – as in, one of those cells did stick around and progress into invasive ductal carcinoma. But, to know that for sure, they would expect to see some current DCIS along with the IDC. So, the jury is still out there. Regardless, this doesn’t make much of a difference for treatment.

They unanimously agree that my treatment in 2013 was appropriate – the academic standard is that mastectomy after DCIS is considered “cured” – there is no need for further treatment. I’m glad she asked them this – it makes me feel better that no one missed anything back then.

They unanimously agreed that I should have surgery first (which will be scheduled to occur within the next 30 days – I already have an appt with the plastic surgeon on Tuesday). McAuliffe will do the surgery; Gimbel will either make recommendations after seeing me, or he will be in the surgery with her. I will be in and out of the hospital that day with lifting restrictions for a few weeks after. Although the tumor is just under the skin, she is going to make a wide cut around it and tunnel down to the chest wall to ensure there is no remnant of it whatsoever. Gimbel will be able to help her determine how to do that and keep it as smooth as possible so I don’t look completely asymmetric.

They unanimously agreed not to touch any lymph nodes – there’s too much risk of problems developing from that. I will have radiation after the surgery and also start the endocrine therapy (hormone pills). The radiation will take care of anything that could be in my lymph nodes. The tumor I have is showing up so brightly on the PET scan and there is no evidence of it in the lymph nodes, so they are confident the lymph nodes are fine. And, if something is hiding, radiation should take care of it.

After she removes the whole tumor, they will send it for genomic analysis. They don’t want to do that now because the current pieces they have from biopsy were basically random pieces that were easy to grab at the moment. Once they have the whole tumor, they can choose a really good piece (whatever that means) to send for genomic testing. The testing will let them know if I need chemo and what chemo would be most effective. Apparently, the conference had a lot of conversation about this because of my BRCA status. If it does come back that I will need chemo, it will likely be aggressive – a platin and a taxol.

As for my abdomen – they unanimously were like “what the hell is that” – I mean, I don’t think that’s exactly what they said, but she said they were all pretty confused by it. The fact that she couldn’t even feel anything when she touched it on Thursday, it didn’t look any different than my other skin — they’re baffled. Still, they want it biopsied. I guess it’ll be a fun surprise for everyone to find out what it is!

Our conversation finished with a to-do list for me:

• send my jury duty notice to her nurse to get released from end-of-month jury duty (looks like I’m probably not going to make that)
• email my rheumatologist to get a clearance on my meds for surgery

Again, I ask, why must I have to do things when I have cancer, but alas, if she’s going to do surgery, I suppose this is the least I can do to help.

Missed My Calling

Today I learned 3 things:

• I’m right basically all the time.
• My preventative mastectomy was a huge waste of time, money, and a lot of people’s energy.
• And, I should’ve been an oncologist.

This morning, my husband and I met with Dr. McAuliffe to find out prognosis and treatment plan. The cancer is stage 2A (not terrible; totally treatable). After looking at scans and pathology from 2013, she is pretty certain that this is the same cancer (just as I suspected) I had then — as many DCIS cells as possible were removed during my mastectomy. But the doctors always said they can never remove every single cell. I like to make this analogy – it’s like a carton of ice cream. Even after you scoop out all of the ice cream, there’s still a little bit of ice cream residue that remains in the carton. Same thing here – they made a cut in the bottom of my breast, scooped out all of the breast tissue, but there was always going to be a little bit of residual tissue remaining. The chances of that tissue becoming cancerous are practically nil, but hey, they took a chance on me won the jackpot! It only takes one rogue mother fucker; this one hung around, grew, and now it’s invasive and is spreading throughout my breast. I suppose, luckily, I felt it before it did too much damage; it is not in my lymph nodes or elsewhere in my body. Still, we are going to treat it aggressively because I am not going through this a third time.

Definitely in my future: surgery to remove the tumor, radiation to kill any other lurking rogues, and hormone therapy (most likely tamoxifen since aromatase inhibitors cause joint pain, and Dr. McAuliffe doesn’t want to wreak havoc on my RA). Chemo is a possibility because of the high Ki-67 (just as I thought).  We talked about doing oncotype testing (yep – thought they might do that) to see if chemo would be required and how effective it would be. She wasn’t quite sure about the order that would make the most sense for these processes – chemo first then surgery? Surgery first then radiation? Put your left leg in, your right leg out? Let’s call the whole fucking thing off. Whatever.

Because my case is complicated (and nearly fucking unheard of) she will present it to the hospital’s multi-disciplinary oncology conference this evening. There will be surgical oncologists, medical oncologists, and my plastic surgeon will attend. Because I’m such an an interesting specimen, these people will all weigh in on the best way to proceed (I have to say, I LOVE this idea – I mean, who wouldn’t? All these brilliantly over-ivied brains getting together to talk about the best way to cure me!!! – I can’t wait to hear what they have to say).

My situation is complicated by a few of factors. My rheumatoid arthritis will likely make some of this harder on my system than it already would be on a typical person.  Also, she would like to remove some axillary lymph nodes to ensure there are no rogue cells in there. But, my anatomy is kind of screwy because of the wack-a-doodle surgery I had in 2013 where they made my stomach into breasts, and it’s unclear if my lymph nodes are where they should be and what lymph drainage pathways I would have if she removed the ones she finds (tbh, I’m making this part up a bit – it was confusing – but I think I’m getting the gist). There is already the risk of causing lymphedema by removing those axillary lymph nodes, so she wants to be cautious with that. They’re going to try to figure all of that out at the conference, and there is some kind of further testing they can subject me to in order to view the drainage pathways (I’m sure it involves dye I’ll get to drink or radiation they’ll inject into my veins while I lay in yet another confining tube listening to persistent banging for at least 45 minutes  – either way, fun!). Dr. McAuliffe is going to call me either this evening or tomorrow with details from the conference.

I tell her I am going to Philadelphia to the Basser Center to meet with their director for a second opinion on July 22. I didn’t get a second opinion in 2013, and I regret that now. Fool me once, cancer twice…. something like that. She looks a bit stunned, but continues our conversation. I’ll have the biopsy of my abdomen next week, I will also meet with medical oncology at some point, she mentions the emotional aspects of this and describes a program where I can see a psychologist in the building who specializes in oncology. Sign me up.

I send a similar version of this post to some friends and family. Their responses are overwhelmingly full of love and support. Some ask me how I’m feeling about all of this, and to be honest, I don’t feel anything. I did feel pretty nervous this morning before the appointment, but Dr. McAuliffe was so caring and thorough, and I think my preliminary research helped me see this as an academic enterprise and keep some emotional distance from it. I diagnosed myself after all – no huge surprises in the exam room today. All I need to do is keep showing up where I’m supposed to be, swallow whatever they tell me to swallow, let them stick me with a few needles, and all of this should be over before I have time to finish my med school applications.

Great Expectations

By the time I was old enough to be a counselor at summer camp (maybe about 17 years old), I had a nickname – B.A. for “Bad Attitude.” Don’t be mistaken – this wasn’t about being a badass or anything remotely cool. This was about being negative, pessimistic, cynical. Even now, 25 or so years later, my friends and family would probably still describe me as “B.A.” although I think in general I am better at showing when I am happy and joyful as well. While I know those who called me B.A. considered it an insult (just one more reason I hated summer camp), I have always been somewhat proud of my natural inclination toward cynicism and skepticism. These are perhaps the world’s best defense mechanisms, for if you expect the least or think the worst is about to happen, you can only be surprised when it doesn’t, right? Because of this, I am happy to say, I am very rarely disappointed. And, I’m always prepared when things don’t go well. My friends comment often how calm I am in a crisis. Well, it’s easy if you’re always mildly expecting one.

So, tomorrow is my appointment with Dr. McAuliffe. What am I expecting? That’s what I’ve been researching and writing about for the last few weeks – trying to figure out what to expect. This morning I had my breast MRI. If that experience is a predictor of anything to happen going forward, I’m in trouble. Five times they had to stick me to get a vein! Those nurses could not have been nicer, but man, it took them almost an hour to get an IV in my arm, and they made a bloody mess to boot (in their defense, I am probably the least hydrated person on earth, and there is only one person I know who ever gets one of my veins the first try for a blood draw – shout out to Ray at UPMC Rheumatology!)

When I got home, I pulled out my 2013 purple envelope from my filing cabinet so I wouldn’t forget to bring it with me to tomorrow’s appointment. There is probably not one single thing in there that I need, but I brought it to all of my appointments then, so it seems like I should do it now, too. I’m just continuing that same journey, right? I guess that’s why I never threw away that purple envelope; maybe I knew I should be prepared in case I needed it again.

The thing is, I actually have a good feeling about tomorrow. I think the doctor is going to give me good news, that this cancer isn’t that bad, and treatment will be pretty easy….. I don’t feel like I’m just telling myself that, keeping my chin up, or trying to be optimistic (because that’s not who I am); I really feel like it’s true. Yet at the same time, there is a tiny gnawing at the pit of my stomach, because I know if I go in there thinking that everything will be fine, it can only be much worse than that.