excessive drainage after double mastectomy

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JennC
JennC Member Posts: 6
edited March 2016 in Surgery - Before, During, and After

I was diagnosed with Invasive Lobular Carcinoma in December and had a double mastectomy on January 28th. I am struggling with my drains. I still have both drains and they are not showing signs of slowing down. I have an appointment on Friday at which point the drains will be in for 51 days. Any suggestions or recommendations on this situations, I'm feeling very depressed and defeated with these drains.

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

    Goodness - that is a long time. I can see why you feel defeated. Maybe one of the surgery veterans like SpecialK could be of assistance. You might PM her. She is very knowledgeable! I hope you get some answers soon!

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  • dtad
    dtad Member Posts: 2,323
    edited March 2016

    JennC...Wow that doesn't sound right. Did you have reconstruction and if so what kind? Are you seeing both your breast surgeon and plastic surgeon? What are they saying about it? Dont want to alarm you but IMO you need to get some answers. Where are you being treated? Hopefully at a university based teaching hospital. Is the drainage volume getting less? Is the color of the drainage getting clearer? Try to get some more information. Good luck and please keep us posted....

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  • JennC
    JennC Member Posts: 6
    edited March 2016

    Thank you for your feed back. I am being seen at a wonderful specialized breast cancer center, the problem is that my drainage seems to be very erratic, and I have not had 2 days in a row of low drainage. The color in both drains is great, I had the double mastectomy and the expanders placed at the same time. I am not sure if I am being too active or if there is something else I need to be doing that I'm not. From everything I have read, the longer the drains are in the greater the chance of infection. On Friday I will have my drains in for 7 weeks and 1 day!!!

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

    Wow! I'm really surprised they haven't pulled those drains by now. From an infection control standpoint, that seems like just asking for a bacterial invasion. I hope you can get some answers, including, "how much longer is this going to go on?"

    ETA: I really sympathize with you. I've had a terrible time with my BMX, done Feb 4. It's been 6 levels of hell. Not at all what I expected. I wonder how many of us are out there, that didn't sail through this surgery?

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  • muska
    muska Member Posts: 1,195
    edited March 2016

    I am surprised they haven't pulled them out yet. I had to keep mine for five weeks. I was told they usually don't keep them for more than 4 weeks. Are you recording how much drainage you get per day and is the number going down?

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  • JennC
    JennC Member Posts: 6
    edited March 2016

    Friday I will be at 7weeks and I do record my output 3 times daily, and that is where my problem lies, the outage is so sporadic. One day I will have a total of 65cc on the right and 45cc on the left, the next day I may have 80cc on the right and 55cc on the left. I am at a loss, I just don't know what else to do.

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  • muska
    muska Member Posts: 1,195
    edited March 2016

    It was a while ago and I don't remember the threshold one needs to reach for them to take the drains out. Also, I believe those thresholds differ from surgeon to surgeon. One thing for sure, the less you move the less you drain. Can you maybe slow down for two or three days and not move around too much? I wonder whether this will make any difference.

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  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    How does your surgeon explain what's happening? How does s/he understand it?

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  • JennC
    JennC Member Posts: 6
    edited March 2016

    Actually he seems about as stumped as I do. I could tell last week that he really struggled whether to remove them based on risk of infection or to wait, he decided to wait due to the amount of fluid output. I'm not sure what is safe to assume my body will re-absorb if/when they are removed.

    Thanks,

    Jenn

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    jennc - I know we have been PMing about this but wanted to also post. For those with long term drains that are still producing more than the usual 30ml cut off for removal, there are several schools of thought - remove the drains prior to fills when they reach a low enough amount of output even if it is not the optimal amount per day, remove the drains when they have been in for a certain number of weeks (to discourage infection) even if they have not reached the desired low amount of output before starting fills, start fills with drains in and hope that the pressure from expansion pushes the fluid production to a low amount and then pull the drains when that is reached, or expand and pull the drains even with higher than desired output and hope the body reabsorbs the produced fluid. There is inherent risk of complications with any of these approaches, so it comes down to your doc's experience with doing any of these things and combined with your individual surgical history, co-morbidities, general health, etc.

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