So am I gonna lose my new boobs?

New-girl
New-girl Member Posts: 358
edited March 2016 in Just Diagnosed With a Recurrence or Metastasis

I was a regular on this site all through 2012 and part of 2013. Once in a while I would check back and see my old friends but after my BMX and DIEP, I settled into my 4 times a years check ups and went about my business. At the end of 2012, a small bump developed on the outside of my right breast ( I had cancer in both sides but the right side had both IDC and ILC) but Dr at NOLA didn't seemed concerned. It kinda looked like a oil gland bump. No biggie. So in December the bump keeps getting bigger and looks not so pretty so my gyn tells me to go have it removed. I am too busy to go back to NOLA for what seems to be an oil gland bump so I find in new plastic surgeon in Dallas. My third one here since the one who originally did my DIEP and I parted ways and I went to NOLA for a redo. Had bump removed last Thursday in the office. No big deal except I have a bad reaction to the surgical tape ( how could I ever forget my body hates the tape) and had been nursing a very inflamed incision. So I am driving my daughter home from gym and it is after 5. The nurse calls with my results and tells me the doctor wants to speak to me. He tells me my cancer is back. Trying to keep cool so my 17 year old doesn't suspect anything. He said I need to go and have it taken care of now. Great. I only have completely reconstructed DIEP boobs. I choose not to take Tamoxifen because the risk was so low when I choose BMX. What is left to remove?

My husband and I barely survived 2012. We are great now but just barely back on solid ground. It was horrendous going through the entire year with him burying himself in his work to avoid dealing with cancer. I haven't told him. I will call my oncologist in the morning. Just had a great checkup with him in December but he didn't know about the small bump on boob. Don't want to go back to my breast surgeon either since she lied to me about my pathology report after my BMX. It is such a mess. Thought I had left it all behind. My best friend had already set up celebrating Feb.13 my supposed 4 year cancer free anniversary. Just stinks. I even have accepted my new boobs and made peace with my body. Seriously this is so beyond rotten. I really don't have time for this and I doubt my friends want to do round two.

SO glad and thankful I have my old friend BC.org to get me through tonight till I call my oncologist and gyn in the morning. I need yall just to hear me vent. Cannot tell anyone until I gather information and my own thoughts. Will I do chemo or radiation? I swore I would never do either. I am 53 and thought the radical mastectomy put me in the clear. I was only stage 1. And worse yet, the stupid bump has been there since 2012!!! Did I not learn anything after watching my breasts change in 2010 till I found my lump in 2012?

One good thing. It is same time 4 years later. Start of new year and deductible. Our deductible is 10k. Its is big deal to do this early in the year. Had four surgeries in 2012. Such a bummer. Was excited about celebrating my 4th year and didn't make it pass 3.


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Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2016

    Hi New-girl - Crap! This stuff is so insidious. I'm so sorry about the recurrence. I have no words of wisdom. One foot in front of the other that's all you can do. Gentle hug.

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  • Ridley
    Ridley Member Posts: 634
    edited January 2016

    New-girl - that totally sucks. I hope they can remove whatever they need to without disrupting too much of you recon. Regardless of whether you go to NOLA again, I would call them tomorrow once you know what you are dealing with, as I'm sure they can help you with understanding your options.

    There is someone on the board who I remember reading threads on who went through a recurrence after diep and who I think went to NOLA. Check on that thread.

    Again, I'm sorry you are dealing with this. Check back in and let us know how you are doing

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  • New-girl
    New-girl Member Posts: 358
    edited January 2016

    I knew I could count on y'all. So very thankful. Great suggestion about calling NOLA. I will feel better too after talking to my oncologist. Thanks again for just cheering me up.

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  • rozem
    rozem Member Posts: 1,375
    edited January 2016

    so sorry...not news we ever want to get

    Get yourself a second opinion when you get your pathology - you want to throw everything you can at this so its gone for good.

    Focus on this and you can deal with the recon issues after. The people at NOLA I'm sure have dealt with this b4

    Good luck and thinking of u

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  • cider8
    cider8 Member Posts: 832
    edited January 2016

    Until you get your full work up you won't have any answers. mine was an almost worst case scenario. I say almost worst because my new primary was locally advanced and I've been NED for over 2 years (yay!). I did lose my breast because I needed all the sparedskin removed, due to Inflammatory Breast Cancer. I kept NOLA in the loop. I will say when I had rads for a recurrence I was worried about damage to my recon. It did little damage. It is difficult to compare it to the other breast being removed regarding shrinkage and symmetry. 3 years post rads the shape is great, no rads 'tan,' but some little blood vessels are visible (damage from rads).

    Hopefully all that is needed is a small lumpectomy and rads. Imaging will tell more. Maybe NOLA can even do the surgical part. I wish you the best!

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  • lovetodance1
    lovetodance1 Member Posts: 62
    edited January 2016

    how long before it started to grow..you said you found it end 2012. Was it under skin or above like a boil or acne?. Could you grab it with fingers? Just asking because some similar happened to me. MRI and ultrasound but it was not seen and was scar over outside implant not covered by muscle.thanks

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2016

    I am sorry you are dealing with this and sorry they waited so long to biopsy it. They were "sure" my recurrence was just scar tissue.

    My reconstruction is implants, but they were able to do a wide reexcision and it looks fine. I still have my implants. Radiation has made the area much firmer and they can fix things up in a few months if it gets worse, but for now all looks ok.

    Keep us posted

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  • New-girl
    New-girl Member Posts: 358
    edited January 2016

    Saw my oncologist today. He was awesome. The size of the bump/lump was a tiny bit larger than a pea. It started out right after my DIEP redo at NOLA in 12/2012. Dr. T said it looked like a broken blood vessel. No biggie. I didn't see NOLA past 5/2013. My gyn said it looked like an oil gland. She was almost in tears today when I saw her. Said she felt terrible and was questioning every bump she had overlooked in other patients too. I asked the onc if it could have started out benign and gone cancerous. He said no it was always the same cancer just slow growing. Yikes three years!

    So plan for now

    1. Complete work up scans over entire body

    2. Surgery to clear margins

    3. Rads

    I said I would never do Rads. Rethinking that now. Oh and I will be taking tamoxifen after refusing it earlier. I don't regret not taking it. Seems I was doomed to get this back.

    I haven't told any family or friends. Not even my husband. Still digesting it all and hoping to be able to present it with a positive spin. I am determined to be more proactive this time and not settle for crappy pain meds and lousy communication from doctors. We will be a united team or I will go look for another one.

    In 2012 I was diagnosed almost to the same day. I was so grateful it was the beginning of the year so I could fully use my 10k deductible. Had my varicose veins I was so embarrassed by finally removed cause I was able to with deductible met. Trying to think of what I can treat myself to this time. If my boobs get messed up, I will go back to NOLA and get some butt fat injected to make them pretty again. Also I might convince Dr. T to redo my crummy nipples. He didn't do them originally just tried to fix them. I must focus on the good stuff not the road ahead.

    Guess I am back for awhile. I will introduce myself again as we move along. Four kids, three in college, one in high school. Husband of 31 years who failed miserably at cancer husband in 2012. We are so good now but this triggers lots of bad memories of him burying himself in work to avoid dealing with this. I pray my attitude will help him deal with it better this time.

    Many thanks for all your comments. Helped me more than I can ever let yall know!

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  • New-girl
    New-girl Member Posts: 358
    edited January 2016

    And one other grip....

    Our deductible is 10K. In 2012 along with our deductible we had the loss of work time plus the NOLA charges including air travel. So we just got it all paid off and now another 10K deducible! Cancer stinks!

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited January 2016

    Cancer does stink! And it's expensive, even when you have health insurance. I totally get what you're saying about your deductible. I was diagnosed last July and by Sept, after a LX and re-excision, I had met my deductible and out-of-pocket expenses. Good thing, because I went on to have 4 rounds of chemo ($48,000 a pop) and 4 rounds of Neulasta ($5000 a pop.) I told my DH I was darn considerate to schedule my cancer for Fall 2015. I've spent at least $250,000 since Sept, all of it picked up by insurance. Whew!

    But now it's 2016 and all the deductibles start over. I'm not looking forward to it, but I'll be having a BMX in a week, which will max out my out-of-pocket for the year. Like you, I am already thinking about what I can have done by 12/31/16. So far it's BMX, followed by hysterectomy, a colonoscopy in the fall, and I think I'll top it off with a total knee replacement in late Nov so I can have the whole Thanksgiving-New Years holidays off. And if I don't like my boobs, I may be able to squeeze in some boob work in there somewhere.

    Yeah, baby. We'll take our humor and positivity wherever we can. Medicating


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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2016

    I hope your husband comes around this time. If not, be sure to find others with whom you can confide. Local gals who've been through it or people here. It is so critical to our sanity to have that "safe place". You may need to clearly state to DH that "I need you to be here for me this time and to not bury yourself in your work. I understand it is hard for you too, but I need you." Sometimes men just need to be clobbered over the head with it!


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  • New-girl
    New-girl Member Posts: 358
    edited January 2016

    I had a very heart to heart with my husband after I got home from the doctors. I told him this was our "do over". We stunk at it in 2012. I told him I expected him to be there for me mentally, spiritually and physically. Too bad so sad he hates hospitals, he will have to get over it. He will not run to the office every time life gets tough leaving.me to deal with our regular life that seems to keep happening regardless of my cancer. I in turn will speak up especially with the doctors and nurses this time. I will demand better pain management . I will demand honesty and frankness. We will all be a team working towards getting me through this stupid cycle.

    I hate this happening again but I feel stronger and more confident to do it better this time

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2016

    I think you hit is right.....you will be a team working to get through this. You can do this. It just sucks that you have to.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    Poodles, a word of advice from one who’s been there: November is a shitty time to get knee replacement surgery because the outpatient phase of rehab will take you well into winter. Last thing you want is to have to deal with ice & snow on a knee that’s still sore, angry & weak, even though you will be weightbearing from the get-go. (My sister had ACL/MCL reconstruction in early Dec.--no chance to plan ahead because hers was to repair a sudden injury--and she was pretty much housebound and nonweightbearing till spring, first in WI and then back home in VA). I had my knee replacements electively, a year apart, in June--and had the summer to rehab them. By Sept. I was pretty much mobile again, albeit with a cane occasionally; and by the time the streets were snowy & icy I could handle them. Get your knee done as soon as you’ve fully recovered from the BMX & recon.

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited January 2016

    New girl, sorry about this stupid cancer recurrence. As you can see, I have been there also. Of course it's really not fun but you gotta do what you gotta do and you'll get through it by putting one foot in front of the other.

    I had a tissue reconstruction originally. Second time they did a wide local excision and the breast surgeon did it rather than the plastic surgeon. I had radiation and there is no damage to the recon. I have a half moon pink line where the excision was-no change in shape to the recon or in smoothness and I can't tell that radiation changed anything. They also took another sentinel node under the collarbone, so one more scar but that one doesn't bother me.

    Hang in there.

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  • New-girl
    New-girl Member Posts: 358
    edited January 2016

    Twohobbies- thanks for the encouragement. Did you have to have another sentinel node biopsy done? I still am traumatized over mine in 2012. The actual surgery doesn't scare me as much as the node mapping does.

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited January 2016

    Newgirl yes they did another sentinel node. Having almost no feeling in the breast though, it was not painful like first time. But I will tell you I came out from the mapping with many Xs all over me and I was so upset I was going to have that many to take out but the surgeon said no, those are all dead ends now. So I only had one taken near the collarbone. Phew! I'll just give you a heads up in case that happens to you.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited March 2016

    New Girl I also had flap surgery done in NOLA and 5 years later had a recurrence. I am just telling you because mine was a local recurrence in a piece of left over breast tissue. I had chemo because I was her2+ and radiation and my reconstruction survived rads just fine. Hang in there.

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