So its back, breast cancer 2.0 - thanks so much

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Maree72
Maree72 Member Posts: 58
so after a fabulous dry July Campine raising funds, I got my results from the double biopsy today (this morning) - from an earlier ultra sound after they the new medical team picked up some extra bumps they felt from a physical exam earlier on, post lumpectomy in Jan where I was told all gone, clear margins , nothing in the lymph nodes all clear there too. 
HAHAHA 
nope lets try a different result result, a false negative was given at that time back in Jan 2023, as my new medical team have now confirmed that there's still cancer sitting in the lymph nodes from the 1st time - so where to now, another pet ct scan, another MRI, back to theatre to removal these lymph nodes and coming home with a drain, 
This bit is new to me, as 1st time around I didn't have a drain.
What can I expect with a drain? Can I drive? Can I wash my hair? I know that may sound silly, like clearly going back to swimming will be out for a bit and yoga class, 
Can the bag sit in the side strap of ones bra? 
Thankfully I'm keeping my breast ( as this point in time) last op was a lumpectomy so that was a plus, I know others don't get that choice.
Just a bit mad, like here we go again, I was 6 months post breast cancer surgery and on the home stretch to my 1st year of being cancer free to my mammogram of 1 year post breast cancer, but nope, do not go pass go, do not collect $200, no get out of jail card for you! 

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  • Aska
    Aska Member Posts: 67
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    Hi Marre, I'm so sorry to hear this.  Apologies but I have no insightful tips for you as I didn't have a drain tube. But I must say your story is a bit worrying....for me...I too was told clear margins, and clear lymph nodes.can I ask why you changed teams? Also I have asked Specialists and GP for whole body scan and bone scan and they won't.  I had ILC Stage 1 Grade 2.
    Good luck with everything. 
  • Blossom1961
    Blossom1961 Member Posts: 2,394
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    Drain canisters are too big to fit on ones bra. A shoulder cotton bag is the go. you will generally only need the drain for up to two weeks, usually less. You can shower with them no worries. I had two and would forget I had them and toddle off to the other room before I realised they were bumping along. Oops. They just sit on your floor at night. A bit awkward but not uncomfortable.
  • Fufan
    Fufan Member Posts: 123
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    @maree72  do you have a breast care nurse?  They should help you with the practicalities..  I didn’t have one (Covid) but managed to acquire a pretty cotton bag to carry my drain, and I made myself a net one to wear in the shower.  If you contact me privately, they’re yours…
  • Ktre
    Ktre Member Posts: 95
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    Hey @Maree72, I had two surgeries and both times came home with a drain, the lymph nodes removal bag was a little uncomfortable under the arm, especially when raising the arm up. The drain came out quicker with lymph node removal (first surgery was mastectomy) I had a couple of little shoulder bags that I used to carry it, was also winter time so me big cardigans covered the tubes etc. You will have a nurse come to check it if you go home with it. Good luck with the surgery and really sorry to hear you need to go back in for surgery again
  • arpie
    arpie Member Posts: 7,668
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    Sorry to hear this @Maree72 xx. That really sucks.  :(   All the best for your upcoming surgery xx

  • Maree72
    Maree72 Member Posts: 58
    edited August 2023
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    Thank you everyone for your thoughtful wishes and advice, this time around I'm more mentally stronger than 1st time , but so very very mad
    @Aska to answer your question what made me swap medical teams and how did this get discovered so quick, my story is one of horror at the medical system here in Brisbane Public  Hospital,
     I don't wish to scare ppl, but also want ppl to be aware that we the cancer patients can be screwed over too by staff who just see us as a number not a person.
    My original medical team treated me so very badly I went into  very very dark place for a while, I'm pretty sure you all get where I'm going with this. I was getting ready to say my goodbyes to ppl. after all the trauma I received during my treatment with Brisbane Public Hospital, from wrong patient tags on my wrist, to incorrect names on my paperwork, the IV failing in the arm as they put it into the skin and not the vein for the IV, the request of pain relief was ignored that my husband had to go and buy my own from the hospital chemist , leaving other patients notes in my room by my bed for me to wake up to to read, the list goes on the physiologist calling me bat shit crazy in one session after I was looking for help to deal with my mental health after all this cancer crap and the hospital treating me the ay they did. Complaints have gone all the way through  to the board of the hospital, they refused to give me my PET CT Scan results prior to the surgery, so day of the operation, in sitting there in a hospital gown and ready to go, being wheeled down to nuclear science for those stingy needles they inject into ones boob, to ask for my report to read with the help of the nurse she explained that report, you can see why I do not trust them or want them near me again, every time they called it flew off the handle and it brought out high levels of my anxiety that I went back to this dark place again and again - I'm sure they were out to kill me, the team of breast care nurses wouldn't return phone calls, emails or anything, when I tried to reach out to ask questions, so ......................... moving on ...............

    After months of searching, screaming from the roof tops, dr shopping for a new GP as my original is also part of the horrific journey that I went though, as she gave me my you have cancer diagnoses in a public space infornt of the room full of waiting patients in the dr surgery - there was no way I was going back to her.
    The second GP who is my husbands GP told me 
    My cancer my responsibility, and he is only there to collect the paperwork only and the Brisbane public hospital was the only hospital to deal with breast cancer, and to go back to the hospital system I came from, that is a complete lie as Ipswich in the West Moreland has a breast care team and we all live in Ipswich and the are with the McGrath foundation, why the 1st GP sent me to the hospital is beyond me as both GP clinics are all in Collingwood Park Ipswich to start with as I am,
    when I asked if he could do a physical exam of the breast he looked at me like I was a leper and he didn't want to touch me. 
    Back to try dr shopping reviews on google again!

    Another friend of mind thought that I should call the national breast screen programme to see if I can book in for my own mammogram, so I called them, they said no as I already have been diagnosed with cancer, I broke don in tears, I was at a dead end. They then put me in touch with the breast care nurse I have now. at the hospital I'm at now, another friend told me about her families GP and to try them

    So I did, and he was happy to take me on and refer me out to the hospital of my choice not the one I was already under, and being badly treated by, turns out my new breast care nurse, or should I say the only breast care to look after me and help, well her husband is also at the same dr as I'm now attending, so she told me to drop her name, so I did, at the time of my appointment, the referral went to radiology not to the breast care nurse, I had another run in with that dep very that, so I called the breast care nurse to say the referral and ended up in this dep not where she was, she said leave it to me Ill sort it all out, and she did, before I knew it I had an appointment to meet her, and the new Dr / surgeon, armed with all my reports from scans to post op reports and more I went went in, they did a physical exam, sent me for an ultra sound to make sure it was scar tissue from the surgery, the ultra sound came back with areas of a cat 4 on the report, they then sent me for 2 core biopsy one in the boob, the other in the lymph, the result are back, and the cancer is still in the lymph, so 6 months post surgery I'm still a breast cancer gal.
    Being explained to me by the new DR / surgeon, than I was given a false negative result from the lymph nodes at time of surgery, 
    As when they put the dye markers in to get to the areas from the lumpectomy, they rushed me into theatre, not allowing enough time to for the dye to work, (this is stated on my post surgery report ) so they got the cancer from the breast ok, then took 2 sample nodes, but left all the node's that had cancer behind. as they didn't get seen due to the dye not making the way there, so they just guessed and took what they thought!
    So now I'm back to square one, and back to surgery to have the nodes removed after the MRI (that was done yesterday) and  then the next PET CT Scan, that's next Friday, we can only hope the cancer has stayed put in the nodes and not moved around the body and set up shop anywhere else,

    So  that's my story, if any one here is reading this from a current affair, 60 minutes or the QLD government or where ever, feel free to get in touch if its a slow news day,
    because NO ONE ever should have to be subject to what I was put through by the teams at  Brisbane Public Hospital system QLD. And I truly hope no one ever dose after what I was put through. 
     
    I now have a wonderful breast care nurse who I trust with my life, and a new team to see me through cancer 2.0 


  • Aska
    Aska Member Posts: 67
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    OMG Maree. I have no words.... this is so disappointing to hear. Lucky for you that you stood up for yourself and just kept on going to get the level of care you should have had in the first case. There would be many out there that wouldn't have the strength to do what you've done.  I hope all goes well,  and that the PET etc is clear
     Xx
  • arpie
    arpie Member Posts: 7,668
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    OMG! I am so pleased that you have your trusted breast care nurse now and team behind you xx 

    All the best with your ongoing surgery xx  ... amazing that they missed the nodes :(  

    Take care
  • Elise_Rim
    Elise_Rim Member Posts: 10
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    @Maree72...all the best with your upcoming surgery! You're a superstar for being so assertive! I am proud of you. :) 
  • Maree72
    Maree72 Member Posts: 58
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    @Elise_Rim thank you that's very kind of you :)