TNS - BMX - no treatment permitted now what?

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Cher56
Cher56 Member Posts: 187
edited June 2014 in Triple-Negative Breast Cancer

Hi, hopeing someone has info or has gone through similar, although I really hope NO ONE has gone through this. No treatment permitted until wound is completely healed.

am IDC/1.5cm/TNS/Stage1/Grade3/Nodes 0/5, BMX

due to contracting staph & strep .. like the day after my surgery, AND being sent home the following day, spent the following week, back n forth to GP, calling my surgeon, going to the ER. they finally did something. however, now I have 2 9x5x2" cavaties, in lieu of incisions. the infection since june 15th is still high & having 2x a day IV vancomyacin &  finally have a picc line in so I do at home. Dressing changes each day. VAC dressing to come as soon as my wounds are a bit better. so the most horrible part. no treatment of any kind until the wounds are healed which will be close to a year from all the medicals' opinions. so now what?

havent' met my Onc yet. surgery was June 14th. will finally see my BS again on Tuesday. but we're not on the best of terms either now, as I was so upset & she was so nasty to me. she's the best (they say), but has NO compassion. anyways, neither here nor there.

anyone know of  anyone that didn't have any treatment for what is supposed to be ASAP? .. 

would be different if this was MY choice, but sure wasnt'. there were more than a few screw-ups, but for now I have to focus on healing. will deal with all the legalistic things later.

sure appreciate any opinions/suggestions/ideas/thoughts/ & experience.

Cher (BC, Canada) 

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  • Luah
    Luah Member Posts: 1,541
    edited July 2012

    Cher: I know about your horrible situation from the Canadian forum. I have to believe that an infection, as bad as it is, can be repaired sooner than a year. (My husband had a horrible one following surgery (also about 9" long) on his leg, it did take 2 1/2 months, daily dressings, awful!). My sister also dralt with an infection followig Lx that took 13 weeks to heal. I would strongly recommend a second and third opinion, maybe at cancer centre in Vancouver. Maybe one of the Candian gals can recommend someone to see there - an onc working in conjunction with a wound specialist.  

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  • Cher56
    Cher56 Member Posts: 187
    edited July 2012

    Hey Luah

    well, I was pretty shocked too about the time line. but the 2 wounds.. cavaties are very large  and even using the VAC dressing it will heal approx 1cm a week. just my right side is 22cm. there are quite a few underminings & tunnels.So maybe even though similar in size because it's the 'breast area after BS got done her work there'? read more below.

    A nurse on my floor (wonderful woman) she came & seen me and said.. wow, identical to size when her Mom had same last Oct. 8months ago. now they're small openings but still a couple cm's to go. although, I did get word via my home nursing that my surgeons plan is to do all this trying to heal as much as possible without surgery, THEN bring in a PS for skin grafts/cleaning. I think it should be now and think it'd heal faster. the BS the other Dr's, the nurses, the home care (wound specialists) all say the same, approx 6-12 mths.

    from the info I've gathered when it's our chest & because the BS's take so much tissue, nerve endings, all the good stuff to bring circulation to your skin, and also make the skin so thin, its' more precarious for healing. I can't believe how slow it is already! 3 days off the IV & really huge setback. So maybe with your hubby's wound being his leg or elsewhere. I dunno. I do believe I have awesome wound care specialists though and also after speaking with that nurse about her Mom has given me that idea. oh, man I'm rambling. sorry. woke in a bit of pain.

    I see the BS on Tuesday & the Infectious Control Dr on Monday, so each time I get added information.

    hope you sleep well 

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  • Simplyblessed
    Simplyblessed Member Posts: 16
    edited July 2012

    Hi Cher... Checking in to see what new info you have been told. I had BMX on 6/6/12 and started chemo on the 25th. Where they did the SNB I too have an open wound. Nothing like what you are describing but I thought I could share my input. I went in and had a mediport on July 5th the surgeon cleaned out the wound while I was under and packed it. Wound care started using this honey in the wound (something I had not heard of until then) and it is clearing everything up.



    When will you meet with your onc? My onc was comfortable with me continuing chemo. I have had another since then. I am on dd AC. I can't imagine an onc allowing treatment to be delayed a year even with 0 lymph node involvement. Have they indicated to you what kind of treatment plan they would be suggesting? Just curious.



    Hang in there and know we are thinking about you.

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  • Cher56
    Cher56 Member Posts: 187
    edited July 2012

    Thanks Simplyblessed (love your handle!!)

    thanks for all you here & other threads!!! I gather strength from ya`ll (although I gather the most strength from my God, but need the human type a lot too)

    sorry to hear you have a wound! dang! I am so blessed to to have a great wound team!! it`s a block from the hospital, so that`s great. I`ve got a PICC in for my home IV for anti biotics, was clear for about 8 days, now somethings back or is new. waiting for report tomorrow. this is week 5 and i`m finally growing in the healing dept!!!!!!!!!! horray for me!!!!!!! it`s quite a mess, but is looking so good. just have to get these bugs under control. I`ve had 3 bugs since surgery (or the day after) & infectious Dr said, if  you`ve 3 bugs.. you can bet you have 5!!! holy crap!

    So I just trudge along. I cried A LOT when the dressing taken off was green again. I had the amazing V.A.C. machine on for about 6 days. & with it it helped to heal quite a bit. so now we`re doing some other types of great dressings until the reports are back & we`re aiming on getting the VAC back on next week. I have a bright Pink tote on wheels that I put the machines (2).

    I have NO IDEA what the plan is. have ONC appointment finally for Aug 14th, 2 months after surgery (BMX), I`m TN so I thought would only be chemo, but surgeon said maybe I will get `pills`instead.. no idea what she meant. so I`ll just wait.(blessed.. I see your a TN also)and I see I should change my signature too as my left was prophylactic mastecomy.

    so what I am hoping for? that the new infection looking stuff is only an absess that burst. it maybe that the bug I have right now has figured out how to work around the anti-biotic .. so will go on a new one.

    hope you all have a great day

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  • Luah
    Luah Member Posts: 1,541
    edited July 2012

    Hang in there Cher... thinking of you. Hope you get some good answers at the onc appointment. Good to hear your wound specialists are so attentive. 

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  • bexH
    bexH Member Posts: 49
    edited July 2012

    I know sometimes they use hyperbaric oxygen to promote healing for diabetic patients.  I don't know if it's appropriate for this kind of wound.  Find a specialist in wound care and go to it.  God Bless

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  • LRM216
    LRM216 Member Posts: 2,115
    edited August 2012

    Cher:

    Just checking in to see how your are doing.  I care,

    Linda

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  • Cher56
    Cher56 Member Posts: 187
    edited August 2012

    Hi Gals.. boy we're sure some group eh? I thank God for you all! not happily that your here I tell Him though. sorry it's been such a delay in reply. usually can find me in the Canadian bunch. 

    Turns out after seeing Onc. the Surgeon WAS WRONG on 2 counts. 1. I COULD HAVE had lumpectomy/rads (she said NO way due to my lungs/RA) 2. I had TNBC. Onc says no, it's 'weakly positive' even a 1% ER is ER+ so that's the treatment. I should've had Chemo, but he's saying no, due to my lungs/ra, the 'risk to life' (his words) is greater than the advantage of Chemo. PLUS we'd have to wait 2-3 mths from now, which puts it past the window of acceptability.

    He seemed a tad exhasperated when my Dad & I asked questions, as I was confused, as I thought for 3mths was 1 type of BC, and now it's another, so of course I didn't do research about ER+, so am waiting for appt to another Onc, just so I have 2 medical professionals agreeing to same thing. there was another surgeon that had disagreed with treatment plan when I was first infected. I had asked my GP for a referral to another Dr. (PS), but he deterred me from it.

    So I'm to start Femara. but am holding off til mid september, when my move & small trip is over. Linda, what treatment did you take? I have to be very grateful that it WASNT' TN, as Chemo isn't in the allowable/acceptable treatment.. so I'd be in bigger trouble. but.. I would like to get to the bottom of this. It's said you can't have 2 types of BC in 1 tumor.. but I thought I read somewhere that it can happen.

     PS.. wound on right side completely healed/closed HOOOORAY.. Left side is only tiny opening.. should be closed in a week or so!!!!! 4 MONTHS AHEAD OF HEALING SCHEDULE!!!!!!!!!!!!! 

    Packers are coming today, movers tomorrow. yes, been overdoing it, how can one not when moving...lol.

    how are all of you???

    xox thanks for caring.. and I care about you too! 

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