Progression -regression I'm confused

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Garlikbread
Garlikbread Member Posts: 181
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

hi ladies,

Since my diagnosis and after 4 treatments the tumor in my breast has never shrunk. I noticed 2 weeks ago that the tumor was getting bigger and my onc checked n said it was the same size. Fast forward 2 weeks and scans show ned in liver, bones stable but breast tumor growing plus a lump showed up on my neck. Onc is now suggesting that I have a mastectomy. My question to Onc was maybe the receptors have changed in breast n she says no. Having a MX will not extend my life so im confused as to why breast won't respond to TX???? N should I get MX because Onc suggested radiation as an option but she said as a last resort

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited October 2015

    Garlikbread - It's certainly good news on liver and bones. Like Bon said, a second opinion would be a good idea. It's a tough decision. You're wise to question if the pathology has changed. I'm also going through progression/regression but bone only and have asked my Ortho to look at images for his opinion. Sorry, I'm not much help regarding MX and that's a big decision that warrants further digging and answers. I'm really sorry you're going through this and I hope you have answers soon. Sending hugs your way.

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  • nancyh
    nancyh Member Posts: 2,644
    edited October 2015

    Garlikbread - I agree Bon and Linda that a 2nd opinion would be good, or even just spending more time with your oncologist to understand what is going on and understand the risks/benefits of a mastectomy.

    I'm grasping at straws a bit, but could they biopsy the new lump in your neck, just to make sure the markers haven't changed? If genomic testing is available, that might also be something to ask about. It seems unlikely the pathology of the tumor in your breast would change, but a new nodule in your neck that isn't responding to treatment while other spots in your bones and liver are is worth investigating.

    Final thought while I'm rambling away here - I had a situation a couple years ago where a scan showed some spots in my liver getting smaller while other spots got larger and new spots popped up. We tried to get an answer with biopsies/pathology and genomic testing, but ultimately there was no explanation. Since the new/larger spots were in my liver, I had to switch treatment.

    Best wishes to you, keep us posted.

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  • Garlikbread
    Garlikbread Member Posts: 181
    edited October 2015

    I met with surgeon today and she gave me many pros for MX and not a lot of negs. One being controlling local tumors since they have almost doubled in size in just 3 months. For 22 months the breast was stable and now all of a sudden they want to grow. Her fear is that one of the tumors will break through because of the size?? I didn't even know that was possible. My thoughts now are that I will trade one problem for another (lymph edema).

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited October 2015

    I'm glad you got more info Garlikbread. I didn't know that either. Are you pursuing to see someone else or will be going ahead with surgery? Whatever you decide, I wish you the very best. I have zero experience with breast surgery but I'm hoping you won't have to deal with lymphedema.

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  • petjunkie
    petjunkie Member Posts: 317
    edited October 2015

    can you have a mastectomy without removing lymph nodes? You already know the cancer is spread, so I don't see why they would need to check the nodes

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  • Garlikbread
    Garlikbread Member Posts: 181
    edited October 2015

    pj I asked that same question and surgeon said that if they do surgery they want to do it the right way. The same way they would treat a lower stage cancer pt. so they say MX, radiation and reconstruction but that I can have say so which i told surgeon no I don't want that because that another procedure to deal with and possible complications...tomorrow I'm supposed to call plastic surgeon in the event the surgeon has a problem closing. Life has a sense of humor. I was a 34FFF and had a breast reduction after nursing 2 and now I may have no breast at all. The iron

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  • dawny
    dawny Member Posts: 1,126
    edited October 2015

    Garlikbread, a short rundown on my history. Diagnosed May 2011, stage IV, large lump in breast, spot in lung, and lymph nodes in neck and chest. I was ER/PR- HER2+. I had Abraxane and Herceptin that took me to NED. Then a new lump in same breast and lymph nodes in chest again. I had Kadcycla on a clinical trial, had progression in lump, came off the trial. I decided to have a single mx, and radiation to the chest wall. Pathology from mx showed receptor change to triple neg. I wrongly assumed that if I was going on a HER2 clinical trial, that receptors had been checked. I was very peeved that I had gone through six months of Kadcycla hell, without a chance of it possibly helping at all. The good news now is that I am now NED again, for almost two years. I decided against reconstruction, as I didn't want the possibility of further complications either.

    I can't understand how your onc can say no to receptors changing. How can that be known without testing? I hope you get some clarity, has surgery been scheduled for you? x

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  • Garlikbread
    Garlikbread Member Posts: 181
    edited October 2015

    surgery will be first week nov. ironically the surgeon mentioned the receptors and that they will check during surgery just to see how the cancer has changed after speaking with surgeon we feel more comfortable.

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  • dawny
    dawny Member Posts: 1,126
    edited October 2015

    I am glad you are feeling more comfortable after speaking to the surgeon. Best wishes for surgery, and let us know what those crafty receptors are up to! x

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited October 2015

    Garlikbread - Will be thinking of you in Nov.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited November 2015

    Hey Garlikbread - did you have surgery? How are you? Sending hugs

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  • Garlikbread
    Garlikbread Member Posts: 181
    edited November 2015

    I actually spoke with surgeon office today and they scheduled me for dec. when I met with onco last Monday she changed her mind about surgery and just wanted to move me to another chemo Gemzar, I said no because she pushed MX then said she wants chemo. I'm going to change Onco after my surgery because I've always gotten that feeling that she doesn't know me n just reads my chart right before she walks into room. When I ask questions she doesn't know and tells me to go find the answers on my own which is why I look to this board for help. I'm not the d

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited November 2015

    Thanks for the update Garlik. I can understand you not being comfortable with her! Hope you find the right fit after surgery.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited December 2015

    Garlikbread - thinking of you. Did you have your surgery? How are you? Sending hugs

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  • Garlikbread
    Garlikbread Member Posts: 181
    edited December 2015

    I had surgery on the 11th today is the first day I feel just ok. Pain was so horrible. Pathology showed clear margins 4/20 +nodes I'm having scans first week of jan. I had transfusion last Thursday counts low but hospital never did blood work before or after surgery so most likely I needed transfusion before surger

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited December 2015

    Garlicbread,

    Sorry about your pain. I had some bad pain for a week because I had reconstruction as well. Due to being stage IV, my surgeon decided to test sentinole nodes with tracer but did not take nodes out. Saved me from lymphedema. You will feel better soon. I'm glad I had the surgery as my breast are now much smaller, not infected or inflammed. I do have mets but my breasts are fine after 6 years.

    Best of healing to you.

    Terri

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited December 2015

    Garlic - Happy about surgery and clear margins. Weird that they didn't do blood work. Glad you're recovering and feeling better. Healing vibes coming your way.

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  • dawny
    dawny Member Posts: 1,126
    edited December 2015

    Hey Garikbread, glad surgery is behind you now. I think it is strange that blood work wasn't done too? What did the pathology show? Was there a change in receptors? Sending gentle hugs to you Xx


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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited March 2016

    Garlikbread - hi, thinking of you this morning. How are you?

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  • Garlikbread
    Garlikbread Member Posts: 181
    edited June 2016

    it's been my toughest year since being diagnosed in 2013. I'm in hospital now for pneumonia

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited June 2016

    Aw Garlikbread, I'm sorry. Sending you healing vibes and hugs. Pneumonia is hard.

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  • zarovka
    zarovka Member Posts: 3,607
    edited June 2016

    I've just been following this thread, not commenting. But you are in my thoughts.

    Did anything related to the cancer treatment provoke the pneumonia?

    >Z<

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