Here we go again

5andcounting
5andcounting Member Posts: 232
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Looks like I am joining a club I never wanted to be in...like everyone else.

I was over three years out and they found another lump and the biopsy confirmed recurrent left breast cancer.  PET scans show no evidence of metastatic disease so I am really counting my blessings there. 

I'm angry, sad, exhausted, all the same feelings I'm sure you've had.  I am now looking for a surgeon to do DIEP flap in the Louisville area. I have an appointment with McCurry, another with Nguyen in Cincinnati, and a third with Wendel in Nashville. I do appreciate any insight that you might have regarding docs with that particular expertise.

I can't decide if I will have one or both taken. I really don't want to do this again. I can't decide if I should have reconstruction at time of initial surgery or wait.

My job (I will be there one year in July) says they may not be able to hold my position so I am worried about that.  Luckily, I did take short term disability that will help some for 3 months.  I am certain I will return to full time work and shouldn't have trouble finding a job but it is certainly irritating when your boss doesn't even try to make it work.

My daughter is upset, my husband is upset, I am upset and I'm tired of being upset all the time.  I had gotten back to "normal" as much as I could. I live every day. I drink alcohol on the weekends and my diet isn't as pure as it should be. I feel like I've let everyone down and I'm scared I am going to die so forgive my theatrical ranting. I'm sure I will do much better in a few days.

Any insights on DIEP or what chemo might be done would be appreciated.I was triple negative before and the full patho hasn't come back yet so we don't know what the hormone receptor status is yet.

Does this get any easier?

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Comments

  • lovetodance1
    lovetodance1 Member Posts: 62
    edited April 2013

    GREAT PET SCAN WAS GOOD. THIS APPEARS TO BE LOCAL RECURRENCE. I TOOK THEM BOTH OUT FROM GET GO. I THOUGHT THERE WAS NO REASON TO LEAVE A CANCER PRODUCING ORGAN/GLAND IN YOUR BODY ONCE IT HAS ALREADY BETRAYED YOU. DID YOU HAVE CHEMO FIRST TIME?. BASED ON MY EXPERIENCE , I WOULD WAIT FOR RECONSTRUCTION IF HAVING RADIATION. IF YOU HAVE MASTECTOMY, YOU PROBABLY WONT NEED RADS.RADIATION AND RECON DO NOT MIX. I LOST MINE DUE TO CHEMO AND LOW BLOOD COUNT. THEN AFTER CHEMO DID IT AGAIN AND IM FINE NOW WITH IMPLANTS.

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    Lumpectomy with rads. Chemo was AC x 4 then T x 4. Dose dense. I'm with you on the elimination of a trouble making organ:).

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  • Annie62
    Annie62 Member Posts: 1,081
    edited April 2013

    Hi CRS - So sorry you had a recurrence. Really does suck. Regarding the chemo, you may be put on Gemzar and/or Abraxane. Abraxane is a relative of Taxol which you have had already. Once you know what your doctor recommends I'm sure you'll get some advice on SE's etc.

    Regarding the DIEP, I know that there are threads in the reconstruction forum on this. I'm sure you would get lots of good info over there.

    And yes, it does get easier. I found the most difficult part was making the decision on whether to reconstruct or not and if yes, what kind. Once I was doing something (surgery, chemo), I felt more in control.

    I wish you the best for a speedy recovery from your surgery.

    Annie

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    Thank you, Annie.  One silver lining of this beast is meeting kind and wonderful people along the way.  This forum has kept me sane in the middle of sleepless nights and given me insight and knowledge.  Have a great week!!

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  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited April 2013

    CRS, I am sorry you are facing this again.  I know how you feel.  I was diagnosed with mets in November, 2012.  I was going to chime in about your DIEP flap.  I went to Dr. Richard Kline in Charleston, SC.  I can't say enough good things about him and his staff.  I went back to work 12 days after surgery.  He is the kindest, most compassionate doctor I have ever met and his staff is absolutely wonderful. 

    Just know, you can do this.  The first few days are difficult days but they control the pain very well.  Each day gets easier and easier.  PM if I can help you in any way.

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited April 2013

    CRS,

    I'm so sorry you are having to go through BC all over again.  I whole-heartedly agree with every word SAMayoFL said about Dr. Kline.  He is my surgeon now, too.  He has been a God send to repair complicatons from past surgeries and treatments elsewhere, to now reconstructing my breasts naturally even though I am so thin.  I sent you a rambling (sorry :)) PM.  Take care.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    CRS, you are entitled to apply for FMLA and your human resources office should have offered you the paperwork. As long as you are eligible, they are required to hold your position for you (or one that is of equal rank/pay). If you were not offered the paperwork, please ask for it and apply. Hopefully someone with more knowledge about this will chime in if you have questions.

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    Thanks so much for all your replies, it really has helped. I've contacted Dr. Klines office and am on their schedule for May 17th. 

    I have an appointment with a new oncologist tommorow as my long time oncologist seemed to completely forget who I was yesterday and recommended Tamoxifen and Zometa. I am triple negative and reminded him and he seemed oblivious. He also rained on my clear PET scan and just seemed ready to toss me to the side soooo....I found a new practice who will see me tommorow morning.  New studies show local recurrence with triple negative benefits from additional agressive chemo.  His attitude seemed as if I would fail again since I had failed the AC then T regimen and rads.

    So frustrating and it really devastated me yesterday.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2013

    crs, I just saw this thread.  I'm so sorry.  Just know that you will be in my prayers.  Thank goodness your former onc showed his lack of attention to your case before you started down what could have been a very bad path with him!

    From personal experience, I am very keen on at least checking in with an NCI-designated comprehensive cancer center, and would think this would be all the more important with TNBC due to newer advances that even great local oncs may not yet be in the loop about.  Here's the list in case you want to follow up with one of them, which I would think you might even be able to do without actually travelling to one:     http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

    (((Hugs))), and I wish this wasn't happening to you ~  Deanna

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    Thank you Deanna.  I will check with some neighboring states and try to let my nerves calm a bit.  Oncologist wants to start chemo within 4-6 weeks so I am working with the center in Charleston to see if we can get surgery set up next week

    Really appreciating all of you here and hoping you are having a good week.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2013

    crs, has anyone suggested neoadjuvant chemo to you?  I'm not a doctor and I'm not TNBC, but I've read some recent research stuff that points to fewer recurrences with neoadjuvant chemo vs. surgery first.  I'm not even sure if this applies to recurrences, but it's certainly worth looking into!    Deanna

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    My case goes to tumour board Friday morning and he will call after that. He said my recurrent tumour is so small he doesn't think neoadjuvant would help but I will be doing post mx chemo. Probably taxotere and cytoxan. Oh joy. Will be so glad to move from this shock phase into treatment so I at least have control over my participation.

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited April 2013

    Hello, Crs, so sorry you have the C word again. I know from experience that it plain 'sucks' to get it after you thought you beat it!



    Just piping in here to give you another kudo for Dr. Richard Kline and the staff at ECPS (East Cooper Plastic Surgery). When I was dx again after almost 18 years (lumpectomy chemo and rads first time) I was devastated when I wasn't numb and in shock. Thought I did everything right and boom, it still happened. The light in this whole thing has been (after checking to see what Atlanta had to offer me) was finding ECPS, calling and talking to Gail at great length, the Dr. Kline talking to me and then his nurse Chris. I could honestly say that those long distance phone calls (along with photos I sent them) made me feel more at ease and confident that they could and would take great care of me than many office visits I spent with other PS who just wouldn't work out for me.



    Charleston is a lovely place - there are great places to stay from free at the Hope Lodge to oceanside at Isle of Palms, to Homewood Suites which is so close to both the hospital and the Drs. office and the beach!!! (Also Homewood serves breakfast - hot and huge 7 days a week with dinner, wine, beer and tea and lemonade 4 nights a week.



    So glad you too found ECPS and I am sure you will one day be telling others. I couldn't say enough about the feeling they give you that you are their only patient - but you know they have others who feel the same.



    So, sorry to have you again in the trenches but happy you have the right surgeon to help you out of the trenches. I also used Dr. Paul Baron for my bmx and he works with Dr. Kline on surgery day as the breast surgeon just in case you need to have another recommendation for breast surgeon in Charleston!



    Hugs



    Catie

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