Far From Over

I am way behind on blog posts.  I know!  I know!  Let me catch everyone up on the latest fun.

October 5th:  We were back to the plastic surgeon for my first “expansion.”  To add to the excitement, the left side of my back had accumulated fluid (since the drains had been removed) which means it needed to be aspirated.  For those of you following since surgery, the left side was the reason I had to go back “under” anesthesia and back into surgery for a 2nd time.  It’s been the problem child in this whole surgery process.

It was an interesting appointment.  Let’s start with the aspiration.  Essentially, I had a small pocket of fluid build up in my back.  It felt like a waterbed when you pushed on it.  They took a syringe, poked it in, and pulled the fluid out.  When they initially break through the skin it doesn’t feel great, but it’s O.K.  It’s when they push further in and they hit a rib that it really hurts.  Trust me.  Yikes!  Anyway, they pulled out 40 ml of fluid.  Quite a bit actually.

Then we moved on to the “expansion.”  I currently have spacers in each breast that were inserted the day of my bi-lateral mastectomy.  They wave a magnet over each spacer to identify the “port” where they inject the fluid that expands the breasts and stretches the skin.  Needle in – fluid slowly inserted – breast expands – literally.  It’s pretty cool really.  You can see a difference immediately.  While it seems like it would hurt, it really doesn’t.  Remember I don’t have a lot of feeling in my breasts.  I do feel really tight in my chest immediately following and into the next day.  Nothing an Advil or two can’t help with.

October 12th:  It was a long day.  I was back to the plastic surgeon for another aspiration and a 2nd expansion.  The aspiration was a fairly similar process from the previous week.  They pulled out a little less fluid this time – 30 ml – which is good.  They say that once it collects fluid, it will likely need to be aspirated 3 to 5 times before it settles down on it’s own.  This particular appointment I was not scheduled for another expansion.  Typically the protocol is to do an expansion every 2 weeks until you reach the desired size.  But I was there, seemed to have plenty of flexibility in the spacers, so they pumped them up again.  I would guess I am now somewhere around a B cup.

That same day (in the morning) I had my every 3 week Herceptin treatment and the first follow-up appointment with the Oncologist since surgery.  We met with the doctor first and then I went into the chemo or infusion room for Herceptin.  Let me just quickly say that the Herceptin treatment was fairly quick and painless.  Compared to chemo it’s nothing!

Now, on to the discussion with the Oncologist.  It was a huge reminder that this “journey” is far from over!  Uugghh.  We started with a discussion around the pathology report from surgery.  Most of what we talked about we already knew:  clean margins, no lymph node activity, the tumor was 2.5 cm when removed.  You will recall it was roughly 4 cm when it was found.  So chemo worked!  It was labeled stage 2  at surgery.  It was likely closer to a stage 3 when it was found.  They did find some “atypical” cells in my good breast.  We’ve been told that could mean absolutely nothing or it could mean that at some point breast cancer could have turned up there.  Either way, they are both gone now.  Confirmed our choice all along to do a bi-lateral mastectomy.

My breast cancer was still confirmed estrogen and progesterone positive which means it was a hormone driven tumor.  But something different appeared in the pathology from surgery compared with my original diagnosis.  The tumor tested negative for Her-2/neu.  The pathology from surgery actually showed it was borderline or equivocal.  Then they ordered a more detailed analysis and it came back negative.  Why does that all matter?  Well, now there is a question on whether I am Her-2/neu positive or negative.  I have always been sort of borderline.  We knew that.  Herceptin was recommended as a part of my treatment plan because studies show that it is effective in fighting the Her-2/neu protein.  It is recommended for a one year period.  I am about 6 months into it now.  So, now that the pathology appears to be negative – do you continue those treatments?  My Oncologist recommends it.  If there is any chance it is helping we should stay the course.  By the way, she indicates there are several reasons that someone can start out Her-2/neu positive and later found to be negative.  Too complicated to list here.  But suffice it to say the plan is to stay the course and complete 6 more months of Herceptin.  Who knows if it will help or not.

Even though the pathology seems clean – at least to Ed and I – my oncologist would not tell us that I do not need radiation.  Not her specialty.  Frustrating!  So, the pathology report is being sent to the Radiation Oncologist.  Ed and I physically have to meet with her to review it.  That happens this week.  We need that confirmation so we can proceed.

We talked hormone therapy i.e Tamoxifen.  I will start that shortly.  Essentially it’s a pill I take everyday to suppress my hormones.  I will be on it for a minimum of 5 years, maybe longer.  Then we talked about ongoing checks, scans, etc.  How do we stay on top of recurrence?  Breast cancer is unlikely to come back in my chest since I removed all breast tissue.  However, did you know that breast cancer typically recurs in your bones, lungs, or liver?  Oh joy.  I won’t go into much detail now, but let’s just say I was not overjoyed with the response we received.  Ed and I have agreed that we still have a lot more to deal with in the next few months…then we really want to get our arms around “ongoing maintenance.”  It’s going to be challenging both physically and mentally and something that we will have to deal with forever.  We’ll get there.

So, this week…more doctor’s appointments.  Fluid is still accumulating in my back.  Wednesday afternoon I go back in to get my back aspirated.  I am not expecting another expansion until next week, but who knows.  Then, Thursday morning we meet with the Radiation Oncologist and are looking for the words, “NO RADIATION.”  Please keep us in your thoughts and prayers!

Comments

  1. Thank you for the update. Message received loud and clear. Pray for NO RADIATION. I am on it. I hope you are feeling better. Hope you see you and Ed soon.

  2. Stacey Shekerow says:

    Sounds like things are still super positive. We know that Rome wasn’t built in a day, all great outcomes are worth the wait. Personally I would rather the oncologist wait for the radiologist (who is the actual expert in this scenario) to make the final call than to give you an answer that will have to be retracted at a later date. We continue to send prayers and mega happy thoughts your way, and remember – YOU, are a mega rockstar – this has been the right path. and IT IS WORKING!!!
    We love you!

  3. Karen Rose says:

    I am sending prayers your way and positive thoughts. You are a strong woman and I agree with Stacy….
    YOU, are a mega rockstar!

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