Diagnosed 4 months ago and still no chemo treatments. Terrified!

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Leahlin
Leahlin Member Posts: 9
edited January 2015 in Stage III Breast Cancer

I have stage 3C invasive lobular breast cancer. I had a double mastectomy with cancer in Rt breast. Had sentinel node dissection as well as axillary lymph node dissection on Nov. 7. I also had breast expanders placed for breast reconstruction later on. The Sunday after Thanksgiving I was preparing for a port a cath placement on monday. I started to get a bad cough and called my nurse navigator to see if they would proceed with port a cath surgery. She said as long as I didn't have a fever. I did not. Had the port a cath placed and was to start chemo on tuesday. However I came out of surgery with a 103.9 fever and long story short developed pneumonia and hospitalized for a week. Sent home with antibiotics. Therefore no chemo. Once again right before starting chem I developed a flaming hot right breast and it was enlarged as well. Saw the plastic surgeon and he put me on another 10 days antibiotics. Didn't work. Admitted to hospital for around the clock IV antibiotics for 5 days. Had a seroma of the rt breast and aspirated it. Removed 165 ml fluid. cultured fluid and the culture came back negative. Two days home from hospital and breast filled up again and turning red once more. Had surgery to remove breast expander and clean me out really well. Cultured fluid once again and also a drain placed. Culture negative again. 10 days since this and my drain is still draining 25 ml fluid every 12 hours. My concern is that this is lymphodemia of the breast and I will not get this drain out and or get off the antibiotics so I can start my treatments. It has been 4 months and I feel such a sense of urgency. The doctor keeps saying hang tight, we are almost there. Well no we aren't! He wants me to get down to 10 ml fluid in 12 hrs and he will pull the drain and get me off antibiotics. 4 months of no chemo and I have lymph node involvement! How bad is this cancer spreading while I sit tight?? Anyone have this issue and does anyone have any suggestions as to what I should do?

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Leahlin, you have been through so much. We are so sorry to read all this.

    On this page are some suggestions that you may or may not be doing to keep yourself as "clean" as possible.

    Infections

    Have you talked with your oncologist about how fast growing your tumor may be? The delay will depend greatly on your pathology report. Do you feel confident on the advice and treatment you have been receiving?

    We're all here for your and routing for the infection to go down, and away!


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  • hopefour
    hopefour Member Posts: 459
    edited January 2015

    leahlin...wow you have been through so much..so very sorry, truly!!! I very much understand your desire to start the "fight"!! Hopefully your draining will become minimal and you can start Chemo. With chemo you will have a low immune system and these infections will be hard to fight..so get why you need the infections resolved...how frustrating...Please, keep us posted on how things go and praying chemo will start soon for you! Sorry no great wisdom, just a sister frustrated for you!!

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited January 2015

    I don't know if this will help but I had Lobular as well and apparently it is really really slow growing? I've heard that some Lobular tumours could have been around for up to 7 or 8 years because they are so hard to find which I am sure you know all about. I didn't start my treatment for what seemed like ages as well. I didn't even have chemo which worried me greatly but in New Zealand if you don't have nodal involvement and you have Lobular they reckon you don't need Chemo? You have been through so much. I am on Letrozole because apparently my tumour was fed by hormones. Can you go on anything like that? Thinking of you and sending best wishes from New Zealand.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2015

    Leah-

    I have a similar story...I was dx'd in October 2013 and didn't start chemo until Feb 2014. I had infection issues with me tissue expanders that resulted in a delay in starting chemo. I was put on IV antibiotics 3...maybe 4 times. I honestly can't even remember now it was so crazy! I had my TE's removed, seroma problems and surgery to clean it out as well.

    My MO allowed me to start chemo with the drain in still. I was monitored closely and the risk of infection was less of a concern than not starting chemo.

    I was scared too, still am sometimes when I think about it. I had node involvement too and just wanted to get the show on the road.

    What does your MO say about this..MO is oncologist. ((hugs))

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    Thank you all so much for your comments and support. I called all involved in my care today and am awaiting word from some. I will be seeing my oncologist this afternoon. I will update you when I know more. Thanks again for trying to help. It means a great deal.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • Momine
    Momine Member Posts: 7,859
    edited January 2015

    Leahlin, please let us know what happens. Are you at a cancer hospital

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    Hi All,

    I wanted to let you know that I saw my oncologist today. Wonderful caring person whom I like very much. I explained all my frustrations and he tried to assure me that we were doing everything we could right now. He was very comforting and tried to keep my head in the game. He said we just cannot do chemo while I have a drain in. My body needs to heal from my surgeries and everyone is different. My setbacks were not due to anything I had done, its just how things happened. I see my plastic surgeon on wednesday and we will see what his thoughts are. So I will try to remain strong and hold on to my oncologists optimism. I will do my best. Again, thank you all for your kind words and support.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2015

    Leahlin,

    Glad that you had a reassuring visit with your oncologist today. It's hard to wait for something like chemo when you think that will help you in your fight against BC. My situation was opposite from yours; I got my chemo first but had to wait for my surgery (which I finally had today). Best of luck to you!

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2015

    Hi Leah

    I'm glad your doctor put your mind at ease :)

    And yes, this is not your fault or anything you did! Keep us posted on how you are doing ((hugs))

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    Thank you. I imagine that too is hard to deal with. Best of luck to you as well. I will keep you in my thoughts and prayers.

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    I'm sorry I am knew at this and not to savvy with the computer. I posted my response on someone else's post. I wish you the best.....

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  • trying2staypositive7
    trying2staypositive7 Member Posts: 96
    edited January 2015

    Hi Leahlin! Just wanted to say that I'm sorry for everything that you're going through. Infections are tough and they take awhile to clear up. Ask to see an infectious doctor. I also developed an infection in my breast with the tissue expander (but it was after chemo and radiation). Plastic surgeon took out expander and cleaned me out in Oct. 2014 and I'm still healing now and still seeing the infectious doctor. Keep checking with your oncologist on his plan of action because I know that you're frustrated. I also agree that maybe you can take tamoxifen in the interim. Good luck. I'm praying for you and I'm really sorry that you're in this situation. 

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    Thanks for the suggestions. Infection has actually healed. I just can't seem to get drains out! ARGH! You all have been so kind and supportive. I feel like you all have been they so much more and I need to keep it all in perspective. (Obviously my mood is much better today 😀)

    You hang in there....I wish u the best!!

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited January 2015

    That's great news Leahlin that your infection has healed. Good luck with your treatment and keep us posted.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2015

    leahlin - I ended up having five surgeries, three of them due to non-healing and loss of my left TE, before I could get to chemo.  I was diagnosed in September, had bi-lat mastectomies the beginning of Nov., but due to surprise positive nodes requiring ALND and the skin healing issues I did not get to chemo until mid-Feb.  I was terrified because I was node positive and Her2+, but it all worked out - hoping the same for you!  Hang in there!

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited January 2015

    (((Hugs))),

    Wow, you have been through the wringer! My oncologist at Johns Hopkins told me after surgery "you don't have cancer anymore, we took that out in the surgery." Try to think this way until chemo.

    Hang in there!

    Sharon

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  • Annette_U
    Annette_U Member Posts: 111
    edited January 2015

    LEIGHLIN, keep us informed on your treatment, I know it's hard. I had chemo first and my mind would spin out of control worrying about if it was shrinking the cancer. It's no fast lane for any of us but hang in there. ELAINE , sounds like you had a similar deal happen like me. I also had 3 large empty matted nodes removed at surgery and did not have them removed/tested before chemo - so I will never know if those 3 of 5 ever had cancer in them. Doc said there was no dead cell debris in them to show there was ever cancer there. She figured something else before made them enlarged, not sure I believe that.

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    Hi Everyone,

    Thanks for all the encouraging words. My drain came out on Monday this week (Jan 19 2015). I'm suppose to start chemo next week. I am afraid they will pull the plug on chemo again because the hole where the drain was, is leaking like a sieve. Hopefully it will seal itself up before tuesday! Not getting my hopes up. I can't be disappointed again.

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  • wrenn
    wrenn Member Posts: 2,707
    edited January 2015

    I hope you can finally get on with it. It is really stressful to wait. I'm sure the drain will stop leaking soon. My lump was found in the middle of June and I had chemo the end of November. I was worried since it was aggressive triple neg. I am glad you have yours scheduled. All the best to you.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2015

    Leahlin, I know your situation is unique, but I've had about at least a dozen drains during this whole fandango and I remember very well when one of them was pulled.  The hole leaked bloody fluid like I'd been shot.  Huge mess.  It didn't last long at all.  I hope yours seals up quickly!

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    Thanks Sbelizabeth,

    You're right about the mess. You're also right about it healing up. Finally yesterday no leaks! Woo Hoo!

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  • Leahlin
    Leahlin Member Posts: 9
    edited January 2015

    Thanks Wrenn, All the best to you as well....

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