mastectomy

Pathology Report and Decisions

stickit2stage410 Comments

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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Be Careful What You Wish For

stickit2stage49 Comments

In 6 days I’ll finally be having breast surgery.

Finally.  *gulp*

I’ve been asking for surgery since I was diagnosed 2 yrs ago. Initially, I was told I needed to get to a stable point and then we could discuss surgery.  Ok. I get that. So I did radiation and started on an Aromatase Inhibitor.

Six months later, I was declared NED (No Evidence of Disease) and I asked again.

I found that it really didn’t matter that I was stable. My surgeon didn’t feel surgery was the right choice. The cancer was already was in my bones so it didn’t matter if the cancer stayed in my breast.

I mattered to me. I hated knowing the cancer that would ultimately be my demise was going to stay there. I wanted it gone. It would keep me up nights wondering if more of that tumor would leak out into my bloodstream and take up residence in another organ. Early stage Breast Cancer patients ALWAYS had their cancer removed. It wasn’t fair.

I was finally coming to terms with the whole ‘let’s not upset the apple cart’ thing when my last MRI showed questionable changes in my left breast. I began to panic. I told them! I knew this could happen. But they were supposed to know better. Fuckers.  Further testing showed I was OK but I began conversations about having surgery again. If the cancer didn’t kill me the anxiety most certainly would.

My Oncologist agreed.  Wait, what?

She finally understood my fears and anxiety and sent me off to the surgeon again.  She would have to agree this time. Right?

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She looked at all the imaging, the notes from my Oncologist and examined me.  She sat me down in a small conference room and began telling me that although there was this scare it still didn’t change her mind.  A mastectomy, in her opinion, was too big a surgery for me. I hadn’t been NED for that long and I should go celebrate and enjoy life. I sat stunned. I was so angry all I could do was cry.

A few days later my Oncologist sent me a note. She was referring me to another surgeon that she felt would be more obliged to operate.  She really did get me. She finally heard me.

The surgeon I saw was cool. She listened to my story, fears and reasons for wanting surgery. When she began to discuss her opinion she started with agreeing with the other surgeon.  GAH!!  Then she went on to say she felt a lumpectomy was the best option to start with. She explained that starting with a smaller surgery would enable them to find out if the tumors were dying and if the surrounding tissue was clear.  She said there could be a possibility that if they couldn’t get a clear enough margins of surrounding tissue that they would have to go back in and that’s when they would just remove the breast completely.

If the lumpectomy went well and they got it all the first go around, in 3-5 yrs if I still wanted a mastectomy and I was still stable she would do it.

So, on Friday, I go in for a lumpectomy on the right side to remove 2 tumors and a lumpectomy on the left to remove a string of 3 tumors. It’s going to be out-patient and should be home that night.

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I know this is the right thing but I’m starting to have that “Oh shit, what did I do” moment.  I’m not changing my mind. It’s just nerves.

Keep me in your thoughts this week. I’ll update after its done and maybe even have some cool pictures.  Kidding!

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Door #1, 2 or 3

stickit2stage46 Comments

I have been on a medically approved break from my Aromatase Inhibitor since June. Since then I have been able to lose 15lbs and I’ve felt so much better.

While I’ve been on this break I have been seriously considering making this break permanent.  Whelp, my Oncologist got wind of my thoughts and wrote me an email. She was very stern and let me know that this was only to be a short break and that at our next meeting we would discuss other options.

Fuck

Last Wednesday was my appointment with my Oncologist. I repeated my thoughts and told her that quality of life was becoming a higher priority for me. Let’s face it, at some point I will have progression. This will happen on or off meds. No one knows when this will happen. I’m very comfortable rolling the dice at this point.

BUT…I did hear her out.  My Oncologist offered me 3 different Aromatase Inhibitor options: Anastrozle, Toremifene or Raloxifene.  The first two have the same side effects as what I was on but includes blindness and urinating blood. FUN!!  The other includes more weight gain, swelling of hands and feet and more.

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Her other option was sending me to a surgeon that would give me a lumpectomy. She would only feel comfortable with my choice to stop meds if I removed the cancer from my breast. She told me that the MRI I had in June did show uptake as did the deeper tumor that we were unable to biopsy.  My metastasis bypassed my lymph system and went directly to my bones so she explained that doing nothing and taking no meds is like playing a game of Russia Roulette with a loaded gun. It wouldn’t be a matter of IF but WHEN.

Fuck

Tomorrow, I see the surgeon. I will discuss with her the lumpectomy and I will also ask about a mastectomy as well.  I know a mastectomy might be overkill and a much harder surgery but if I’m going to consider surgery I would be remiss in not covering this topic.

Then I have to make a decision:

Door #1: begin a new Aromatase Inhibitor
Door #2: Lumpectomy  or
Door #3: No surgery, No meds

I’ll be honest and I know I’ll catch shit for this but, gun to my head, if I had to decide right this second…I choose Door #3.  Here’s why….

What if I don’t progress for 5, 10, 15 yrs? What if I never progress before something else does me in? What if??

After how completely shitty I’ve felt taking Exemestane and the 4 weeks of Letrozole, I’m not in a hurry to go back to that. Yes, I know chemo is much, much worse. But who knows when I will have to pony up to that bridge and (more brutal truth) I’m not certain I will decide to do chemo. There are so many considerations that will go into THAT decision. First and foremost will be what age and where my son is in his life.

I realize I may catch all kinds of shit for my lack of drive and perseverance when it comes to my treatment but please understand, I’m in a different place in my life. I don’t have young children, I’ve already had some amazing experiences, vacations and career. I’m pretty content and whether I have 2 yrs or 20 yrs, I don’t want to be sick, hurting or be a drag on my family.

So….this is where I am. I have a feeling I’ll have to decide sooner than later and by that I mean this week.

I will update again soon…

My Disease Is Not A Game

stickit2stage41 Comment

Every October a new social media game circulates and I don’t mean Candy Crush.

I’m sure you’ve seen one of them. Either it’s is an obscure post or you’re send a DM with instructions on what to post. When you read it you’re not sure what’s going on. They go something like: “Ran out of toilet paper…goodbye sox.” If you comment or ‘like’ it you get a message that informs you that you need to pick from one of the listed status and post it for Breast Cancer Awareness”.

Are you KIDDING me?

In what universe does this do anything for anybody? Are you donating money for research?? Are you quoting statistics and educating? No, you’re turning a deadly disease into a joke and causing a lot of people anger and sadness in the process.

I’m going to die because of breast cancer. Posting about winning the lottery or having a foot fungus is NOT going to help me and excusing your ignorance in the name of ‘awareness’ just makes you sound even more ridiculous.

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There is another, even more atrocious, game that happens under the guise of Breast Cancer “awareness”. On October 13th, it’s “Don’t Wear A Bra Day.” I am not sure everyone understands that a large majority either had one or both breasts amputated. Those who have undergone reconstruction will never have their pre-cancer breasts again. Still there are other women who have chosen to go flat. They have no breasts whatsoever. Games like this sexualize cancer and demean those women impacted by breast cancer. The worst part of this game is the date. October 13th is also Metastatic Breast Cancer Awareness Day. This is the kind of breast cancer I have and there is NO CURE.

Breast Cancer is the ONLY cancer that’s sexualized. It’s also the only cancer with a marketing plan. It’s pretty offensive to those of us dying of this disease. In the United States, it is estimated that 120 women and men will die every day from breast cancer. That’s 43,730 people every year according to The American Cancer Society. To put that in perspective, when I was diagnosed in 2013, that daily number of deaths was 108.

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What troubles me the most is that there isn’t more outrage about these games. I went to the Social Media page that was created for the posting of pictures like that and reported it. I’ve also reported every posting I find. Of the postings I’ve reported to due to obvious nudity NONE were removed.

When will people begin to realize that Cancer is not a game. It’s not a Facebook status. It’s a crappy disease that takes your health, your financial stability, your relationships, your friendships, and your ability to hold a job. If you don’t think it’s all that bad then step right up and live a day in my life or a day in one of my friends lives. I guarantee you’ll run back home as fast as you can.

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So, please, please stop these games. When you see them, let those participating know that Cancer is not a game, it’s not funny and it certainly isn’t awareness.

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