Trying not to freak out

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LuvRVing
LuvRVing Member Posts: 4,516

I have an appointment with my BS this afternoon at 3 p.m.  A week ago Thursday I had a seroma drained and the radiologist insisted on doing a needle biopsy at the time.  Got a call last week while visiting family that Cytology found cancer cells.  The BS didn't have a full pathology report at that time, but insisted I come in immediately after returning from my trip (got home last night).

First cancer was found last June.  I had a lumpectomy, then Mammosite radiation, and have been taking Femara since August.  I was "weakly" ER+.  The biopsy was in the same site as my lumpectomy....WTH???  How could that area not be sterile after receiving 34 Gy of internal rads?

My onco does tumor marker test (CA 27.29).  The first one in August was 34, the next one in early January was 39, then we did it again the first week of March - 64.  I guess I'm not entirely surprised that the biopsy showed something.

 I will be discussing BMX with DIEP with my surgeon, and asking for a referral to a PS.  And I have an appointment with my onco this Thursday.  I'm sure a PET scan is on the horizon.

It sucks.  I'm worried. 

Michelle

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  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited March 2011

    Aw dang Michelle, that does suck.  I will say a special prayer for you at 3:00 this afternoon.  Please come back and post what happens.  Until then, I am sending hugs and positive thoughts your way!

    Susan

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2011

    Thanks, Susan.  I am trying to be strong.  Not sure if it's better that I am way more "knowledgeable" than I was last June...or if ignorance would be bliss...LOL. 

    Michelle

  • Leah_S
    Leah_S Member Posts: 8,458
    edited March 2011

    Michele, there is no way for me to tell you not to be worried. Whether or not it's justified, once we have this beast we are worried, frightened, unsure of the future - you name it. I can tell you that  I hope all goes well and that I hope it's a local recurrence only.

    All the best.

    Leah

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2011

    I am back from the BS and it appears that the only logical explanation for a recurrence this soon after Mammosite radiation is that some cancer cells got pulled into the hematomas from the Mammotome biopsy.  That damn thing has been nothing but trouble from 15 minutes after they completed the procedure (on June 21st).  Apparently this is extremely rare, but it does happen.  I am having an MRI on Thursday, plus I have an appt with the MO.  I'll probably have a PET scan on Friday, and I meet with the PS on Monday.  I will have a BMX with DIEP within the month. 

     And oh, now I am an "interesting" case and this will be presented to the tumor board. 

    Good grief!

    Michelle

  • apple
    apple Member Posts: 7,799
    edited March 2011

    good grief indeed.

    wishing the best for you as you proceed.

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2011

    Thanks, ladies.

     Apple - I live in Blue Springs, not far from you.  Do you go to the KC Cancer Center?

     Michelle

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited March 2011

    {{{MICHELLE}}}} Prayers going up for you!!

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2011

    Thanks, Barbara!  Hope you are doing well.

    Michelle

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited March 2011

    I am approaching my one year cancerversary and am trying not to freak out also. Gentle hugs my friend. You can do this. It does suck having to be the strong one though.

  • Dilly
    Dilly Member Posts: 655
    edited March 2011

    Michelle, I am thinking of you and sending hugs and best wishes.

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    Ok, now I am scared...

    Today has been a whirlwind of doctor appointments and information dumping.  I got a call from the breast surgeon this morning and the MRI showed the cancer that we knew was there, plus three inflamed nodes.  It doesn't necessarily mean they are cancerous, but they are suspicious.  Luckily, nothing seems to be outside the region of the left breast and the right breast was OK.   I will have a PET scan on Thursday and hopefully those nodes will be benign.  I have a ton of inflammation from the seroma. 

    I met with the plastic surgeon and...I don't have enough fat for the DIEP reconstruction I was hoping for.  I should be thrilled that someone told me I don't have enough fat for anything but "A" cups and I've had lots of offers from potential fat donors ;>)   It looks like my reconstruction will be done using tissue expanders. 

    After the PS appointment, I went to see the breast surgeon.  She showed me the MRI and we talked about a surgery date.  It will be either next Wednesday, 4/13, or the following Wednesday, 4/20.  During the surgery, a port will be installed for administering chemo.

    Then she walked me over to an oncologist who is also a radiation oncologist right there at the hospital.  I was in her office for  2 1/2 hours.  A nurse took my history (please let us have digital medical records soon; I'm so tired of explaining the deaths of my siblings and my dad), took my vitals, weighed me, etc.  After a wait, the oncologist came in.  She already had quite a bit of information and had read the existing pathology reports.  She asked me a lot of questions and answered mine, she spent a lot of time talking about how we would control glucose levels (and really got into the whole diabetes thing).  She tried to reassure me that everything I have done so far to take good care of myself would lead to a better outcome than a diabetic who has not been cautious.  She knew about the metformin trials and felt that it could still be doing its job of fighting the cancer.  She made a point of saying it might be worse if I hadn't been on it.  So she recognized that it has benefit.  She also noted that diabetics on metformin usually have a good pathological response to chemo.

    This is the hard part...her chemo protocol is even more aggressive than the other onco's.  She wants me to do 8 rounds of chemo (one every 3 weeks).  She gave me options - 4 rounds before surgery, followed by surgery, followed by 4 more rounds; or do the surgery first, then do the chemo.  She leans toward doing chemo first because, as she said, she's an onco and it tells her if it's working.  But both protocols have the same end results and she understands if I want the cancer removed immediately.  I said that surgery first would provide the pathology so we know what we're dealing with, and she agreed with that. There are the tumor marker tests and PET scans to determine that the chemo is working.   I really don't want this aggressive beast hanging out one minute longer than necessary.

    After chemo, there will be radiation, then the implant exchange and hopefully I'll probably have my port removed.

    If all goes well, I will be finished with treatment by Christmas.   Tough to swallow. 

    Time to arm the battle stations...right after tonight's pity party.

    Michelle

  • Dilly
    Dilly Member Posts: 655
    edited April 2011

    Oh, Michelle {{HUGS}}



    I am so impressed by how much you got done today, and how coherently you explained it to us - your pity party is pretty self-controlled! Best wishes to you as you move forward.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2011

    ((((MICHELLE))))

  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited April 2011

    Michelle, do you know yet what kind of chemo you will get?

    Susan

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    SAMayoFL:  Onco is recommending AC+T.  Not sure.  Got some interesting news today - CEA test came back at 0.8.  Normal is below 4.0.  No indication of activity there.  Now I have to question all this.  The PET scan will be the decision-maker, I think.  If by some miracle it comes back clear other than the breast, we will have to re-think all this. 

    Surgery is now scheduled for Monday!!!  Found out when the hospital pre-op nurse called and told me.  Communications have been fast and furious, and not all in the right order. 

    Whew, what a ride!

    Michelle 

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    ((((LuvRVing)))),

    What a ride is an understatement!!!!

    They are definitely moving at lightning speed!  As I am sure you know from the first go round that waiting can be just excruciating BUT when things go so darn fast it's hard to process everything at once!

    Will they even have the results from your PET by Monday?  Or is the surgery you will be having the same regardless of the PET result?

    Please know that you are in my thoughts and prayers! 

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    Seaside - the surgery is happening regardless of the PET scan.  My only concern is whether or not she should do axillary dissection if the nodes appear clear on the PET.  I'm sure I'll be able to talk to her before surgery.  She should have results, the scan is being done at the hospital.

    Michelle

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    LuvRVing,

    Hope all goes well for you today with your PET!!  Hang in there!

  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2011

    Michelle, I don't even know what to say. You and I were identified at about the same time, and had the same mammasite treatment at the same time. My prayers are with you. I'm just so sick about it all. I will be checking in daily to see how you are doing.

    Karen

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    Thanks, Karen.  I am so bummed at all this, I can't even begin to describe my feelings. And I spent all of Monday and all of today with doctor appts, tests, scans, pre-op stuff, etc.  And now I will go in tomorrow morning for a biopsy on my suspicious nodes...or the surgeon will just take them all on Monday.  I really, really want to avoid full axillary dissection if it is at all possible. 

    I am tired, I am cranky, I don't need to have the extra pain.  But I am doing it anyways.  One day at a time.

    Michelle

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    Michelle,

    You are in my thoughts and prayers that those nodes turn out to be just fine and that gives you one less thing to worry about!!!

    You have certainly had more than your share of stuff to have to deal with!  Thinking of you tonight!

    Just a quote that I found to be helpful... True courage is not the absence of fear.. It is being afraid and showing up anyway! 

    One foot in front of the other and one day at a time!!!

  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2011

    Michelle, You have every right to be bummed, angry or any feeling you're having at this time. I know just how hard all this has been for you. I'm glad you feel good about the new Onc. I am praying the nodes are just from the infection.

    Karen

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2011

    Michelle, I am adding my prayers to the others. Holding you close in my thoughts.

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    Thanks everyone.  You are all so supportive and I don't know how I would manage without my BCO sisters.  I have a really good support team of family and friends, but you all have "been there done that" and it helps to know that.  I had this discussion with my friend who has had BC 3 times.  She talked about being in a lonely parallel universe that no one else really understood.  I told her about this place and the thousands of women who "knew" exactly what I was going through.  It may be a parallel universe, but it's not a deserted, lonely one!

    MIchelle

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    I'm back from the Axillary Node biopsy.  They biopsied just one node and of course, we're hoping for benign results.  It was a little worrisome.  The node kept rolling and the radiologist had a hard time getting the needle into the right spot.  But he was good, and persistent.  Sitting here with an ice pack.  It doesn't hurt yet.  He had to add extra anesthetic to get a tunnel to the node.  So I'm thinking I might not feel it for a little while.

    The weight loss fairy has paid me another visit.  Low carb from the day before yesterday, fasting yesterday morning, and just general loss of appetite from stress is taking its toll.  I'll never get DIEP if this continues...lol.

    Thanks everyone for hanging in here with me.

    Michelle

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    Michelle,

    Glad to hear that the biopsy is over and that you are back home and not in a lot of pain!! Hopefully they sent you with something just in case it starts becoming painful later in the day.    

    Will keep you and your family in my thoughts and prayers!  Do you know what time on Monday your surgery will be? 

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2011

    Seaside - they didn't give me pain meds, but I've got plenty if I need it.  Actually I am currently taking arthritis-strength acetaminophen 3 times a day because I had to go off my anti-inflammatory med for my arthritis.  So, I'm doing OK.  This one didn't hurt nearly as much as the draining that the radiologist did on 3/17. 

     My surgery is scheduled for 1:00.  I am told it will be 3-4 hours, and I'll spend about an hour in recovery.  My daughter is flying in from Mass. on Sunday night, so she'll be here to help for at least a week. 

    I called my BS office a couple hours ago, asking about results from the PET scan.  I know the pictures are available because I saw them online at the Breast Center.   But there was not yet any kind of report.  My BS's nurse said that they were trying to get them, and they should have them before the day is over. 

    Breathing in, breathing out...

    Michelle

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2011

    {{{MICHELLE}}}

  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited April 2011

    Oh Michelle!  I am breathing in and out WITH you!  The waiting and waiting is truly awful.  So sorry that you are having to go through all of this!  That is great that your daughter will be flying in and can spend the week!

    Hang in there!  Let us know when you hear anything!!

  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2011

    Prayers going your way!!!!!!!!!!!!

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