Aromatase Inhibitor

Pathology Report and Decisions

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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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Door #1, 2 or 3

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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…

A New Chapter

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In a previous post I mentioned that my Oncologist suggested I take a break from the Exemestane I’ve been taking since my diagnosis.  I had been complaining about my increasing weight and my inability to lose any. That was in June.

Fast forward to today and I’m now down 17lbs and I’m walking a half mile to a mile almost every day. In fact, this week I can happily say I walked about 7.5 miles in total.  That may not seem excessive to some but the bone and joint pain I was experiencing on the Exemestane was crippling. It not only affected me physically but it affected my personal life because it made me cranky. When you don’t feel good you can’t be the way other people expect you to. I’m not a person that can stomp down the pain, frustration and exhaustion and put on a happy face. This isn’t Hollywood and I’m not an actress.

Physically, I feel really good. I do have some pain in my hips but the Gabapinten I’m taking helps dull the ache. I’m starting to feel lighter…finally. I still have quite a ways to go but I’m making progress and that only makes me want to continue to lose the weight and keep walking.

I’ve met some really nice people on my walks too!  Mostly, folks with dogs that want to male friends with Bella and others that just feel like talking beyond a passing ‘Hello’.

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The other morning, while Bella was being curious and sniffing what I assume to be another dog that had been by, an energetic older women approaching me yelled out, “We are wearing the same colors.”  And we were. Right down to our white sneakers. She stopped and commented on Bella and then we walked together for the next .69 miles. She told me about her children and even her estranged relationship with her mother.

I told her about my diagnosis and the story of how I found out. I explained why I was walking and my desire to get my ‘pre-cancer’ body back. She was sweet and thankfully avoided all battle language but she did say she would put me on her church’s prayer list and that for the next 2 weeks I’d be prayed for round the clock.

My goal is to be at my desired weight by October. Before it gets too cold to go walking and the snow flies.

When I see my Oncologist again in September, I plan on telling her that I will not be going back on Exemestane or any other Aromatase Inhibitor. It may seem like a foolish decision but my quality of life is more important to me than living with the daily pain and fatigue.

I am putting my cancer away. I’m done with it. Everyone says I’m doing great and should enjoy life and that’s exactly what I plan on doing. Although I don’t exactly know what that will look like for me, I am eager to see how it all unfolds.

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Acupuncture For The Beginner

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My Oncologist suggested I try acupuncture to help with the side effects of the Exemestane I’ve been taking for the last 10 months as well as nerve damage from radiation I had to my ribs. To be honest, I wasn’t happy at the prospect of more needles but these are not supposed to hurt and I am SO ready to feel some relief that I figured it couldn’t make things worse…. Right??

So, I had my first acupuncture treatment last week and you wouldn’t believe how it started.

Ready??

The woman (thank God she waa female because I would have walked out otherwise – you’ll see why shortly). I was told to disrobe but to leave my bra and underwear on and to lay down on the table. She would step out and come back when I was ready. She takes my pulse on both arms and says my Chi is totally fucked up and slow. Well we can’t have this so I need to get unblocked or else none of what she has planned will work. To do this she needs to put 4 needled is 4 very specific spots because they form a kind of circle. So she begins to explain that one goes in my chin…the other in my upper gum area above my teeth…another goes in my tail bone and the last one goes in my …..(sit down for this).. my perineum (you know, that space we have between our vagina and our anus). Now these needles don’t stay there, she just pokes them in and yanks them out. I can still feel that one in my ‘special spot’ and I left my appointment a week ago.

She had me sit up and she mapped out the placement of about a dozen needles she put up and down my back. These she left in place for 10 minutes. Finally she had me lay back down and she put what looked like little piles of ash on my chest and lit them on FIRE…yes, I said fire. I was instructed to let her know when I felt the heat and she would scoop the ash off. At the end she checked both pulses again. She said I was good to go and I left.

After I left I began to doubt the good this will do because how could putting needles near my lady parts and burning ash on me help??? Well, I did the thing I do best and I Googled. I found a message board on an acupuncture site and posted my concern. It took a while but I did get some replies. I was told that this was very common with someone who practices The Five Elements Acupuncture and that those four needles are usually done in the first or second session. The ash is called Moxa and its done before the insertion of needles on certain points. It was suggested that I give it 3-4 treatments before I decide to quit.

I’m going to give her the benefit of the doubt and continue going but there is NO way she’s doing those 4 points again.

Moral of the story….if you go to an acupuncturist make sure you ask where she might put those fucking needles before you find yourself in that familiar gynecological position with a strange woman’s hand up your cooch!!

I’ll let y’all know how this drama ends and if it gives me any relief.

***I never went back and never felt and benefit whatsoever. I do have friends that swear by acupuncture so I would suggest that you get a recommendation from a friend or someone that has been to wherever you choose to go.