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prestressed
prestressed Member Posts: 37
edited June 2014 in IBC (Inflammatory Breast Cancer)
help in canada
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  • prestressed
    prestressed Member Posts: 37
    edited February 2008

    Hi   I do not know what to do , This  has been going on for about 7 months  and no  questions are getting answered. first  my left  breast squirted a greenish brown thick  discharge  then bloody  that went on for about 3 months   then  the same breast  became very swollen  red hot and itchy it lasted for about  6 days  made an appt  but by the time  i could get in  it had went away . he sent me for a ultrasound and made appt with a surgeon  at this time  the ultra sound showed nothing .  the day of the ultrasound the pain and swelling started up again  but still had  2 weeks till  the appt  with the  specialist,  it went away  before that appt again . so they never got to see it .  he sent me for a mammo  the results  came  back normal.  during  xmas  it inflammed again  i went to the emerg they gave  antibiotics and sent for another ultrasound  but still nothing  . the first round  of antibiotics did not work  so had to get another prescript .  that helped for about  1 month . I was sent to another specialist Awoman at that  she  said it was a bacterial infection. That  was 2 weeks ago.  But  2 days ago(1 day after taking antibiotics for something else) it is starting all over again .   I have seen about 10 docs  including the ones from emergency room 3 times. Anyone here know a doctor i can go to  that  knows  what they  doing?  

    thank you    any help  will be greatly appreciated  

    Prestressed

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2008

    While nipple discharge is really scary, in almost all cases - about 95% of the time - it's the sign of a benign condition.  Since your symptoms come and go, that does seem to indicate that it might be an infection. And I suspect the difficulty you're having in being treated is that by the time you get to the doctor, the symptoms have disappeared.  But obviously, since the symptoms then come back, whatever is causing the problem hasn't left your system.

    Since the last doctor said that she thought it was a bacterial infection, did she prescribe antibiotics?  It sounds as though the original antibiotics worked, although not quickly and not completely, since the infection reactivated later.  With a really stubborn infection it sometimes takes a stronger antibiotic or several rounds of prescriptions before the infection is completely gone.  You mention that you are now on antibiotics for something else, but that doesn't mean that this antibiotic would work for this. There are different types of antibiotics that each work in different ways.  Some antibiotics, while able to get rid of one type of infection, might actually put you at risk of other types of infections.  So it could be that the antibiotic that you are taking for something else actually triggered the infection to act up. 

    I think that rather than find a new doctor, I'd recommend that you stick with one doctor who can follow this through until the infection is completely cleared up.  I think part of the problem you're having is that you haven't had a single doctor who's aware of all these episodes; you've seen 10 different doctors who each have seen only a piece of the total picture.  Is there one of the doctors that you've seen that has the best idea of what you've been going through?  That would be the person I'd suggest you see now. 

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  • prestressed
    prestressed Member Posts: 37
    edited February 2008

    Yes  i have  one doctor  it is  just hard to get in  to see him   and  have had to go to emerg twice  with 4  doctors altogether trying to figure this out .  my doctor  sent me to a specialist   then he referred me to another  all my documentation  has been noted with my physician.  I just started more antibiotics  yesterday  especially for  this problem . they  all are saying  diferent things to me . as for an infection  they still can't ell me why ?   i am getting this   i can post  a pic  of it as i was told to take  by the physician yesterday . Thank you  for getting back  to me    Ps  i did exxagerate a bit   i guess it was 7  docs in total   Sorry about that      

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  • kimmie39
    kimmie39 Member Posts: 319
    edited February 2008

    Hi

    I   answer but I will say from personal experience that you can see multiple docs who are all wrong!!!!!!!!!!!!!!!!!!!!!

    I did and it took me three months of pushing for answers to be diagnosed!!! 

    If you believe something more is up, thats all I would need to see a breast specialist and specifically ask if they are familiar with IBC and what test it would take to see if thats what you have. Although I personally STILL had a doc tell me he was familiar and in the end found he was not!!! 

    IBC can and does go undetected on mammos and ultra sounds!!

    I had to have a MRI to detect it and I had to insist on the MRI to get them to give me one.

    IBC is serious business .  Its aggressive and like all cancers potentially deadly.

    Please do not mess around if you have the slightest indication.

    God bless

    kim 

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  • prestressed
    prestressed Member Posts: 37
    edited February 2008

    i have to report mirena  iud     i am   very lost    and any help  will  be greatly appreciatied 

       if  i am in trouble i need help 

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  • prestressed
    prestressed Member Posts: 37
    edited February 2008

    thank you     any answer  is better than none      i really appreciate it 

    i just  wish it  could e

    xplain why 

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  • prestressed
    prestressed Member Posts: 37
    edited February 2008

    i am going to bed thank you

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  • prestressed
    prestressed Member Posts: 37
    edited February 2008

    hi   had  a doc's appt yesterday   he referred  me to another  surgeon   they called this morning  with the date and time  of  June 24th .  unbelievable. 

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  • kimmie39
    kimmie39 Member Posts: 319
    edited February 2008

    NO WAY!!! Are you serious. Call them back and explain nwhy thats not acceptable or go to a different surgeon.

    Kim 

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  • ateepay
    ateepay Member Posts: 40
    edited February 2008

    You need to start demanding....Tell them you demand they RULE OUT Inflammatory Breast Cancer,

    and WAITING is not an option.

    I am so sorry you are going through this...



    Patti Bradfield

    President

    The Inflammatory Breast Cancer Foundation

    www.eraseibc.com

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  • lexi4
    lexi4 Member Posts: 1,074
    edited February 2008

    prestressed,

    Yes, you really need to demand an appt much sooner. IBC is very aggresive and not to be taken lightly. Please do try to get a new appt.

    Hugs,

    Lexi

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  • prestressed
    prestressed Member Posts: 37
    edited July 2008

    hi    It  has been four months since  i have been on  here    i have not  had anymore inflammation since  the   6th round of  antibiotics     but still have  discharge     going  for a ductogram    finally something    in 5 months  .  all i have to report      i wish all the best       thank you  

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    Hi   WELL ,  the last  2 months have  been a total waste  of time   and caused  yet more pain . I went  for the ductogram which  was unsuccessful after 3 tries.  So i was told told the discharge  and inflammation  was due to  plugged ducts   OK  i thought    atleast  there is something  being done. went for  surgery  aug  27  to have them removed (MON)    went well     by wed  breast started to feel  hot  and swollen  thurs  red  hot and  doubled in size.  Friday  went to emerg  rm and was put on  IV antibiotics for seven days,  saw  the surgeon  the following tues  he  was  concerned  but was sure  it  would  be gone for  good all tests for cancer came back neg  and he said i had  fibrocystic disease .  i asked what to do IF  it  came back  i was to call and  see him  right away . i was done the IV  on friday  sept 5 . By   wed  sept 17  it started again   i was able to finally see my family doc  (which  was the first time he had seen what i  have been going through for the last year) UGH!!!   put on more antibioctics  for 2 weeks. I saw the surgeon tues sept 23,  He  said there is no more he can do  because he is stumped!   And now i am referred to an infectious disease specialist .  That appt  isnt until oct 29 th  i am soo depressed because  i am getting no where    my last  day of these antibiotics is tomorrow  the swelling has gone down as well as the redness   but it has been  peeling  and  now has caused a sore like i have two nipples.   sorry for  the bad  typing and being sooo long .   thank you       what am i to do ?   Where do i go ?

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  • erika-canada
    erika-canada Member Posts: 142
    edited October 2008

    Hi:

    I would "bug" my family Doctor until he followed up, perhaps with an MRI. I had IBC and it completely cleared up from anti-biotics--absolutely no sign, a normal breast. This put me behind treatment by at least 6-8 months. I believe had it been diagnosed sooner it wouldn't have gone to my lymph nodes.

    Don't stop until you have a satisfactory explanation. If they get upset, too bad, you're not there for a popularity contest. I so wish I would have been more forceful.

    Many hugs,

    Erika

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    Hi   Just got back  from my family doctor  more antibiotics   and he  is booking a  MRI     So i  now wait for the date

    Thanks  again  to everyone

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    Hi  Just  got the appt for the MRI   It is tomorrow at  9:45.  i am soo happy  that  i am able to get in that  quick. 

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    Well   it is done.  now  how long  to wait .  they told me  it would probably be  2 weeks  is there any way  it will  be earlier?  I am  soo anxious  just to find out something  so i know what to do  from here.  i have waited soo long   for  answers .

    thank you  

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited October 2008

    prestressed:

    I have never heard of MRI resutls taking two weeks the normal turn around time is at the most 5 days.  Since I only have MRI's done now my onc and pc get my results in about 3 days.

    Keeping my fingers crossed that you get your results sooner.

    Hugs

    Laura 

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  • BMac
    BMac Member Posts: 650
    edited October 2008

    Prestressed, I posted on another thread about MRI results.  Whenever I have any test I ask the tech when my doctor will have the results.  Two weeks may be for the written report but they can get an oral report much earlier than that.  You could either phone the MRI dept and ask that question or phone your doctor's office to find out if they can get an oral report.  Waiting is the worst part.

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    Hi   i went for my results yesterday    the report  said no cancer was found     no paget's    and they are  sure  it is  mastitis.    the doc  is sending me for blood work on tues.    The fact that there wasn't anything on my report  about IBC, does that  mean that it wasn't checked ?   The redness is still there   i am on week 5  of antibiotics (this time)    it swelled so bad   it caused it to peel  3  layers as well  as made a sore  which i do   have  a bloody  gray  discharge coming out  of .the sore.  which was coming out of the incision after my surgery. .  any  suggestions  are more than  welcome. not sure  what else to do.  i am sick of taking these  pills constantly. not too mention  very tired.  no  energy  at all.    If there is anyone in  the london area  that knows  where i can go ?  please  let me know  .

    thank you

    Carrie

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    Hi me again      it's back     the swelling and redness   and more PAIN  then ever.  but now has  moved under my arm into my back . I had one more day  of the last antibiotics.    Called the drs   couldn't get in  of course  but  he wrote me yet another  prescript.  going to a clinic  tomorrow morning   i am praying  he will be of more  help      

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    well   i am excited to say   i got my referal  to the princess margaret hospital      just one question   does any one  have his #  and fax ?     my doctor  needs it too complete it .

    but other than that    thank you  alda  and regina   for  all your help 

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  • BMac
    BMac Member Posts: 650
    edited October 2008

    Prestressed I hope all went well at the clinic last week.  How are you doing?

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  • prestressed
    prestressed Member Posts: 37
    edited October 2008

    Hi there    i  am still   with no answers    i tried getting a referall  to  a doctor in toronto  but  was told no   since i was not  diagnosed with cancer    so i am now  trying to go  to  sunnybrook  in toronto     saw my family doc today   put on more  pills   and go  back  saturday  ,    i don't know  what to  do  .  i asked  my doc  about my biopsy   why they   didn't biopsy the skin  he said  it  doesn't have anything to do with my skin .    I am  totally  confused  by him since he won't listen to me   about ibc       i am taking my husband with me  on sat  .  as he is  really  not  happy with  what they are telling me  . Thank you for asking      best wishes to all 

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  • prestressed
    prestressed Member Posts: 37
    edited November 2008

    well hey guys    after  many attempts to have my skin biopsied  or just another biopsy    was told no 

    4   appts with an infectious disease specialist     she knows  nothing     all she can say  that it is something inflammatory  with my body .  and is  sending me for more surgery .

    i have been crying    and crying     but i did  manage to be referred to london 

    what am i to do now ?   These two sores  won't heal      they keep bursting  as soon as  my breast starts  getting inflammed???????????????/

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  • pinoideae
    pinoideae Member Posts: 1,271
    edited November 2008

    http://canadaonline.about.com/od/healthcarewaittimes/Wait_Times_for_Health_Care_in_Canada.htm

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