Edema experience

KWKW727
KWKW727 Member Posts: 6
edited May 2022 in Newly diagnosed
hello...i had a wide local excision for DCIS and sentinel node biopsy on 4 Feb followed by a re-excision on 25 Feb to excise a positive margin on the DCIS.  Surgery was at the 1'oclock position. I understand that tissue was mobilised into the void and internal sutured so the whole breast has probably endured a fair bit of trauma.  Since surgery #2,  the lower part of my breast ( has had red blotches and orange peel (peas d'orange) appearance which is most likely edema.  Surgeons didn't seem too worried about it at surgical review on 16th March (just said it was fluid and the location was due to gravity) but it just isn't going away.  Depressing enough to have a diagnosis and then a surgical scar, without having other weird changes also going on.  I'm 3 sessions into radiotherapy now.  I showed it to them but they didn't seem too worried.  I just feel like the surgery was long enough ago now to be looking better (apart from ugly scar)

Has anyone had breast edema and did it eventually just go away on its own or did it require compressive or other treatment?  I've put my firmest sports bra back on.

Thank you :)

Comments

  • Afraser
    Afraser Member Posts: 4,442
    @KWKW727

    I had a mastectomy and a very persistent seroma (fluid retention) developed. The conventional response is to allow it to dissipate naturally but sometimes it doesn’t. Ultimately massage, from a qualified lymphoedema specialist, helped a lot.  
    It’s worth action as fluid retention can possibly encourage some bacterial infection. Massage helps
    natural dissipation, which is generally considered better than removing the fluid by aspiration. I had fluid removed several times and it just came back again. Massage worked better. Best wishes. 
  • arpie
    arpie Member Posts: 8,125
    Welcome to the blog, @KWKW727... So sorry to see you here (in the club that no-one ever asked to join xx). Where abouts are you?  If you put your city/region in your 'profile' (click on your name & then click on profile on the left hand side) ... then members in the area may be able to point you to specific services available in your area. 

    I had a seroma following my lumpectomy - and it eventually self absorbed.  Following my surgery, I had an appointment with a lymphedema specialist who showed me how to massage the area to encourage absorption as it can affect your range of movement if it gets uncomfortable.... but as you don't want an infection to set it, if you are still concerned about it, can you talk to your Breast Care Nurse about getting a 2nd opinion?  Maybe take a photo of it each week, to see if it appears to be getting bigger or more red?

    I hope you are going ok with the Rads ... make sure you keep the creams & lotions up to that whole area - even for a month after the finish, as you'll find the area is still very warm for some time afterwards ....

    The scarring is still very 'fresh' just now and may take some months to become less 'angry' looking .... my surgeon suggested that I use a gel called Kelocote on the scar to help minimise it - it is only a small tube, but a little bit goes a LONG way .... and it worked for me!  My Onc is amazed at how well it healed - she has to have a good look to see which was the affected boob.  There are a few different gels/creams that members have used that they may suggest to try too.

    Feel free explore the rest of the forum too (see the link below) .... we have areas where you can show off your art & craft, your pets & garden & even have a giggle at some 'funnies' .... as well as plenty of other discussions on treatments & side affects & a HUGE range of other subjects.
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care & all the best wth your ongoing treatment xx
  • KWKW727
    KWKW727 Member Posts: 6
    thanks @arpie

    I did have a seroma in the first surgery (not that I knew) but which was identified and drained in the second surgery.  I am having 15 sessions of hypofractionated RT (the new global standard for DCIS I believe).  I am glad it's not 30.  15 feels less life impacting (although noting it is double the fraction each time, rather than half the dose).  The doctor at the cancer centre where the radiation is being done told me it was a rash when I showed him and gave me Diprosone steroid cream but I know it's not a rash. It's under the skin, not on the skin - we know our own bodies.....even if they let us down unexpectedly.

    I have been using strataderm on the scar pre rasdation but honestly it never dries so trying to put a bra on over it is pointless.  Might try another brand at a later time.   Right now I am trying to use sorbolene only (and putting a compressive sports bra over sorbalened skin makes for a greasy sweaty mess.)

    Honestly after being in sports bras day and night since the biopsy and surgery, in a Perth summer of 42-46  degrees has just about made me want to rip my skin off with heat rash and sweat.  Thank goodness for cooler weather now.


    Anyway I have a check in with the Radiation Onc on Tuesday so will talk to him then as to whether antibiotics are warranted.  I have a breast physiology appt at the end of May so can also seek support for managing it then.

    I am sure you all know one thing leads to another....... it's quite mentally exhausting having the list of issues pile up.  

  • noosa_blue150
    noosa_blue150 Member Posts: 211
    edited May 2022
    I had the “orange “ appearance and some hardness post lumpectomy surgery and then radiation didn’t help either.I visit a,good breast cancer physio and have massages of breast tissue (theyll show you how to do,it too). The orange skin appearance has abated nicely and whilst hardness and soreness isn’t greatly improved I suspect it’s leftover side effects now and I’ll have it forever .
    Physio can also rule out true lymphoedema of the breast as diagnosis
    other treatments included getting a piece of mobiderm and inserting it in between bra and breast tissue . You can also,wear compression bras (various ones available )

    I asked surg team about mine too ( scar tissue and edema/hardness ) but they were not concerned nor bothered to give any advice so physio best source. I did have a ultrasound and mammogram 15 month post surgery to establish no recurrences.(Im stage 4 but know now that no serious cancer issues in breast tissue)
    I’ll try and put some pics up for you .
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    edited May 2022
    https://youtu.be/xL8Hm6hjuwc

    Jen Mackenzie breast physio has numerous YouTube videos -all free of charge- which may give you some options BUT please see if you can see a physio in person ( some may not specialise in breast cancer ) and you need to be properly diagnosed 
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    Well used mobiderm, inserted into bra. Massages tissue by default as you wear it 
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    One type of compression bra -I wear mine at night as I don’t find boob tubes comfortable 
    If ordered through a hospital physio , you may be able to get free if one a health care card.I had to,pay about $250 (large size -I’m normally am 36D)
  • KWKW727
    KWKW727 Member Posts: 6
    @noosa_blue150  than you for all this information :)