Happy Birthday! Your Treatment Failed.

It’s the nature of the beast. The way Metastatic disease works. We begin the best treatment option and hope it works for a long time. If you’re lucky, it does. Sometimes, like this time, your luck runs out sooner than you hoped it would.

I began Faslodex in January of this year and Ibrance in February once Insurance approved it. That’s the shortest run I’ve had because of progression.

The news wasn’t as ‘bad’ as it could have been. (That’s a lie…it’s all shitty when there is cancer showing in a PET scan). The PET scan showed cancer in the lymph nodes under my left arm near my breast as well as that painful spot in my ribs has grown bigger.

There are a lot of unknowns right now. I’ve never had cancer in my nodes before. Not even when I was first diagnosed and this is the “non-cancer” breast. This could be a totally new primary breast cancer with a new pathology. Also, the cancer in the ribs could be different now too.

So…..here is the plan of action:

Next week I will be having a Mammogram/Ultrasound and Sentinel Node Biopsy.  Then I will be having a CT guided biopsy of my ribs (hopefully under some kind of sedation).

Once all the pathology comes back we can figure out what treatment will be best to keep this from getting out of hand. It is of utmost importance to keep this from reaching my organs for as long as possible.

I absolutely MUST be at my Son’s High School graduation next June. I will not accept any other alternative. If that means I get a little more aggressive with this treatment then that’s what I do. Any Doctor not on the same page as I am with this won’t be treating me.

Now, I will take some time for me. I will release the emotions I’ve been holding in all morning and have a good cry so that when Adam comes home he won’t see how scared and sad I am. He deserves to have the appearance of a ‘normal’ Mom for as long as I can give that to him.

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The Mind F*ck

Ask anyone. Living with Cancer is a total mind fuck and if you’re living with Metastatic (terminal) Cancer like I am it’s a never ending mind fuck roller coaster.

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Monthly blood work to see if the cancer is waking up and planning a move. Regular scans to see if your insides are glowing. You stay on top of your treatment plan to make sure the blood work and the scans stay ‘normal’ but when it comes time to do these things that’s when it becomes a Mind Fuck.

You worry before the tests, you worry during the tests and you worry after. What will they show? Will I glow? Is my treatment working? Can I exhale until next time? I don’t feel new pain. I bet my headaches mean bad news.

See what I mean? Total Mind Fuck.

I’m in deep, deep Mind Fuck territory right now. It’s a scary place to be in. It’s a different place than what I described above but could toss me up there if I make that call. If I tell. I don’t know if I want to. I’m pretending it’s not real, that the pain is not real. In my head, it going to go away. In my head, if I go for imaging it’s going to be negative. I’ll be just fine. So there’s no reason to tell. No reason to make that call. Or is there?

Mind Fuck

The Cancer is in my bones. The pain is in my lower back – my spine, my bones. The pain is real. It’s not going away. It’s getting worse. There’s a small lump. When I lay down or sit down it feels like I’m against a rock. There’s no rock to remove. I pretend the pain isn’t there. So, I put on a band-aid of pain meds and ignore what I know I need to do. I stare at my phone. Mind Fuck

I don’t want to be the “Girl Who Cried Wolf.” I don’t want to run to my Oncologist with every new ache and pain paranoid it’s more cancer and for the most part, I don’t. Mind Fuck.

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I’ve not had good experiences with imaging. I’ve had tumors missed, fractured ribs called ‘inflammation’ and PET scans not pick up active cancer.  Mind Fuck

The scenario plays out in my head. I pick up the phone. I call my Oncologist. She examines me. I go for a CT or MRI. She tells me it’s nothing. The painful rock in my back and the shooting electric tingling down my leg to my foot is “nothing.” Complete and Total Mind Fuck.

The next appointment on the books is April 22nd. In my heart I know that’s too long away. I also know no matter how bad the pain gets I won’t go to the Emergency Room. I stare at my phone. Mind Fuck.

This can’t possibly be new metastasis. I JUST started a new treatment plan in February. Ok, yes, my tumor marker did go up a little bit this last time. But that doesn’t mean anything definite. Most people have progression after MONTHS of being on a particular treatment. Not two months. Right? Mind Fuck.

I stare at my phone. Maybe I should wait for my next labs? If my markers go down then maybe it’s nothing. Or maybe it’s still something. If I wait, those little bastards could travel anywhere. Mind Fuck.

Sigh, I’m making the damn call.

Pathology Report and Decisions

Almost 2 weeks after my bilateral  lumpectomy the surgeon FINALLY called me.

The left side that had hinkey looking cysts/tissue was not cancerous but definitely needed to come out. She said it was more lobular than ductal.

The right side, the breast that betrayed me from the beginning had 2 tumors. One just under the nipple that was now dead. The other that was found on the MRI, that they couldn’t biopsy was 2 cm and ACTIVE cancer. Unfortunately, she didn’t get clear enough margins and it looks like I’m headed back to surgery.

I asked about a mastectomy even if just the right side since we are going back but she still isn’t a fan. She would prefer I be a few more years out.

Also, nothing is going to happen until I have my PET/CT on the 30th.  I have what could be (at least it feels like and acts like) a new met on my 5th or 6th rib. Whatever this is, it’s a hard mass that is painful. It feels like it wants to bust out of my skin and makes it difficult to use my right arm.

So, plan right now is PET/CT and decide if I’m still a surgical candidate and whether or not I also have radiation on the right breast. I will also need to decide what new Aromatase Inhibitor I go on now. If I do have a new spot (or spots) it may be a game changer. I want to keep chemo as far away from me as possible for as long as possible.

The moral of this blog is this:  If you feel that something is best for YOU, and everyone disagrees with you, DON’T GIVE UP.  It’s your body. You know it better than anyone else. BE YOUR OWN ADVOCATE.  Keep pushing and asking questions.

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The surgeon validated me by saying I was absolutely correct in having this surgery because the exemestane didn’t kill it and the PET wasn’t picking it up. Everyone was telling me I was NED when really, I wasn’t.

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Looking Back

2 yrs ago on, August 19th, while taking my husband to the airport, I received a call from my GP that I wouldn’t truly understand.

I had been undergoing tests for most of the month for what I had thought was a kidney infection. The previous Thursday I had an MRI and was anxiously waiting the results. I was to have knee surgery on the 20th and wanted to know before I went in.

Dr Pitts was trying to be calm and reassuring. She explained the MRI showed a spinal lesion and rib lesions. She explained she needed to consult an Oncologist for what to do next as this was very unexpected findings.

As I was trying to comprehend that she just said Oncologist, she went on to say that I would need a biopsy. She said something about it could be confined to the bone or coming from another site.

I could feel the tears well up in my eyes as my brain was connecting the dots and realized she was talking about bone cancer. I couldn’t breathe.

She told me to have the surgery and that she would call in a few days with the next steps. Whatever that meant.

I honestly don’t even remember the conversation I had with my husband before he left the car. Nor do I remember driving home. I just knew I now had a huge secret that I couldn’t tell because I didn’t have any answers other than I had Cancer.

My Arthroscopic knee surgery went off without a hitch. It was so odd to me because I was in no pain whatsoever. I was even questioning if the pain meds had even worn off at all. There was no throbbing pain, no uncomfortable feelings in my knee or leg at all.  Looking back now, it would see that it was Karma’s way of apologizing for what I would be going thru these next 2 yrs.

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I remember on that Wednesday, while my parents were staying with me that I knew I would have to tell them. I was waiting for the Dr to call to tell me these ‘next steps’ and that it would be a difficult conversation to hide. I waited until after we had dinner. I remember telling my folks to sit down that I needed to tell them something. It was so awkward. I told them that the tests I had had so far had indicated that I had cancer but that they were unsure if I had bone cancer or another cancer.  I told them about the lesions in my bones and that I was waiting for the Dr to call me back.  Their reaction, to me, was off. I had expected them to both be upset. Instead they were a quiet calm and told me not to worry that the Dr’s would get to the bottom of it. WHAT?

August 22nd, my Dr called. Blood work needed to be done before 5pm and she confirmed me for a PET scan on the 28th. She explained that the PET would tell them if there was more cancer and if the spots I had originated from another part of my body. So, I had my Dad take me to do the blood work. I asked what labs they were running and was told in addition to the CBC and Metabolic Pannel, they were testing for CA 15.3. Turns out that tumor marker is mostly for uterine and ovarian cancer.

Friday, Hubs came home. By the afternoon I received notification that my medical chart had an update. I was so confused. Everything was within standard range.

Saturday, August 24th was an awful day. I woke up and my right leg was double in size. I could barely wiggle my toes. I called the Dr on call and was told to go straight to the ER. After a very long ultrasound on my legs I was told I did in fact have a DVT. I had a clot at the top of my calf of the knee that was operated on. I was put on blood thinners and the nurse taught me how to give myself injections in my stomach.

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I would learn later that the clot was not necessarily a result of the surgery but because I had cancer.

Two years ago this morning, I arrived for my PET scan at 7am. I went alone. I remember feeling like a lab rat. I was put in a room where they inserted the line where they would inject the radioactive glucose and later the contrast. I remember as I left the Imaging Center, that everything felt surreal. Did everyone know I had cancer? Could they tell by looking at me? Did I look different? Was I dying? How did I get here?

My phone was like a time bomb. At some point it was going to ring. I just didn’t know when. Finally, right at 5:30 pm, it rang.

My Dr was very calm. She explained that the PET showed I had cancer in my right breast. But what about the spine and ribs? She told me I’d probably have to have a biopsy to confirm that they were also breast cancer or it could be a different cancer. She wasn’t sure. She told me she would be making appointments for me with an Oncologist and a Breast Surgeon.

I was so confused. How could I have breast cancer in my bones? It would be a few days later before I truly understood the magnitude of what was happening and what it all meant.

Some people remember one specific date as their Cancerversary. The day they were diagnosed. I, on the other hand, have most of August as a remembrance. It starts with the day I went to my GP thinking I had a simple kidney infection and ends with the phone call of my PET scan results.

I have been very lucky so far. I’ve been NED since February 14th 2014. I hope my luck continues and that I can keep playing this game of life with house money.
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Questions Go Unanswered

Well, I did the blood work..I had the PET scan and we met with my Oncologist. I had been preparing to hear not so great news. I was not prepared to hear what I did.

The PET Scan didn’t show any progression. It did show inflammation where my rib tumor is to indicate trauma or recent injury. OK…so I’m not crazy and the pain I’ve been having isn’t in my head after all. To rule out a fracture my Dr had me do xrays on the rib. Because the rib is compromised a fracture would make sense.

Then we talked about the blood work. I told her about the one marker Antigen 27.19 and how it’s been steadily on the rise and I’m now over the high end. She explained that in some cases blood work is ahead of PET Scans. So what she said was this PET could be a false negative. I asked about clinical trials and if I might be eligible for one. I explained that I want to get ahead of this and make sure that this cancer doesn’t get to an organ. I signed paperwork for the hospital to do more testing on the biopsy slides to see if they can get more information about my cancer and place me in the best clinical trials. If I can’t do a clinical trial we will then discuss tweaking my meds or possibly even chemo.

I’m meeting with my local oncologist this week armed with my PET results and blood work. Even though she isn’t my primary Dr I do value her opinion and input. She knows I want to get ahead of the beast before it gets ahead of me. I’ll have to be patient and wait a few more months before I will feel more comfortable in my treatment plan.

I’m going to stay positive and keep focused on being bigger than this cancer.