DCIS Recurrance

suze1229
suze1229 Member Posts: 13
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Has anyone on the boards had a recurrance after being diagnosed and treated for DCIS?  It appears that I have a recurrance that showed up as a rash on my right side, just under my arm.  Anyone else have anything like that?

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  • J9W
    J9W Member Posts: 395
    edited August 2011

    Suze1229,  I've not had one.  Do the docs say the rash is a recurrance of DCIS? This stuff scares me.

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  • suze1229
    suze1229 Member Posts: 13
    edited August 2011

    Yes, I went to the dermatologist for rash, and he recognized it and biopsied it.  Just got results last night...  (I was in an airport in Houston, just about to board a plane...  I do not recommend hysterical crying while boarding... people stare...  :-)  )

     Anyway, if you are interested, I will let you know as I find out more about it...

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  • J9W
    J9W Member Posts: 395
    edited August 2011

    OMG.  showing up as a rash!!! I had NO idea that could happen.  OK, I must thank you though....while I'm SO sorry foryou for the horrible news you got, I did chuckle on the "I do not recommend hysterical crying while boarding" line. A freaking rash????? Yes, I would be very interested in what you find out. Thanks for sharing.  (((((((HUGS)))))))

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  • suze1229
    suze1229 Member Posts: 13
    edited August 2011

    Just a quick update.  My dermatologist spoke with a surgeon, who said I would most likely need chemo, radiation and surgery.  I meet with her on Wednesday.  I guess I can look forward to bald days in the future.  My 16 year old twins are already enthusiastic about going wig shopping with me...  LOL

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  • J9W
    J9W Member Posts: 395
    edited August 2011

    Kids are great, huh???  I love that they are looking forward to shopping. You should take before and after photos because my guess is the kids will have you sporting a new look.  I'm so sorry to hear this news and that you have this stuff to deal with once again.

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  • Anne888
    Anne888 Member Posts: 58
    edited August 2011

    Suze, did the doctor mention "inflamatory breast cancer"? (IBC) I know that can present as a rash, but I thought it had to be on your breast.  Please keep us posted as you learn more. 

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  • Emaline
    Emaline Member Posts: 492
    edited August 2011

    Oh I'm sorry Suze!  Did they say if it was still DCIS?  Or was it missed cells that changed? 

    I'm so sorry you are back dealing with this.  

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011

    Hi All~

     Here is what I know so far.... Met with surgeon last Wed.  She said it is very unusual to have a recurrance with DCIS, and very unusual that a recurrance shows up as a "rash."   I did have a PET scan last Friday.  The scan showed cancer deep in the right armpit lymph nodes, and the areas where there is the rash.  She specifically said that the liver was clear, and the bones look clear, which will be confirmed with a bone scan tomorrow.  MRI of breast area on Wed.  Should have treatment plan by Friday, if all test results are to Dr. by Thursday for the "Breast Cancer Conference."  Looking forwarde to getting going with the chemo, and getting this over with.... Will let you know as I find out more!


    Cheers!

     Susan

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011

    She did not mention "inflamatory breast cancer"? (IBC), as I recall.  I did have a mastectomy on this side, so not really any breast tissue for rash to appear on...  LOL  Ummm..... Don't know if this is related or not, but I am noticing small lumps starting to appear on rashy areas.  Dr. did say this appears to be an agressive cancer... Not sure if I remember this right or not, but seems like I have been told that aggressive cancers are easier to treat and kill off, than their slower growing counterparts....

     Cheers!

    Susan

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  • J9W
    J9W Member Posts: 395
    edited September 2011

    Susan,  I'm sending cyber hugs and good vibes your way. Janine

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011
    Thank you, Janine... You are a sweetheart~~~  Wink
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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited September 2011

    Suze.... DCIS does not met or is it invasive. DCIS can spreads through the milk ducts. DCIS can develop into invasive cancer and when it does it is no longer DCIS. Once DCIS develops an invasive component then it is IDC.

    It seems (you can confer with your doc)  there were dcis cells left in your breast that developed into IDC (Invasive Ductal Carcinoma). If I had a rash and the doctor didn't check for Inflamatory cancer, I would get a second opinion. Hopefully it's not inflamatory breast cancer...that kind is very aggressive. If I were in your shoes I would definately get a second opinion.

    Whatever is happening it sounds serious. This is the time to be asking questions, researching, and finding a knowledgable and good doctor. Keep in touch and let us know how you're doing. (((hugs)))

    Look up Beesie's post. She posted a lot of great infomation on DCIS.

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011

    Thanks for the info!  I will ask more about it.  MRI in the morning...  :)

    Susan

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited September 2011

    Susan - Wishing you the best of luck with today's MRI and that all goes well.

    P.S. Your teens sound wonderful 

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  • J9W
    J9W Member Posts: 395
    edited September 2011

    Suze,  just thinking of you and hoping all is going as good as good can be in this situation.  Janine

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011

    Thanks, Janine!  Finally meet with oncologist today.  It has been frustrating waiting to get in.  My rash/tumor has been visibly changing and growing; I want to start chemo yesterday!  LOL   Anyway, they did say I may receive the first treatment today.  Will most likely get a port.  I am a little hung up on this, as I just don't want a port in my chest.  My father had something placed in his arm, and I think I would prefer that.  I know a port is no big deal, I don't know why it freaks me out so much.  On a postive note, I had six inches cut off my hair last Friday, just to experiment...  Before it falls out, I am going to get it cut really short, just to see how it looks.  I was always too chicken to cut much off my hair, in case it looked bad.  Now, who cares?  LOL  Working on enjoying whatever I can right now..... 

    I did talk to my surgeon a couple of days ago, and she said the pathology would indicate this is a recurrance of the previous cancer.  She said the first time around, it tested weakly for estrogen and progesterone, but this time it tested negative; she indicated that this isn't good.  I need to research and find out what this means, exactly.  She also said it had changed to become extremely aggressive.  She mentioned a new chemo drug, that she said I had probably seen recently in the news (I hadn't),  and that my cancer would respond to it.  I had an echocardiogram on Monday to see if I would be able to take it.  Looks like I can.  :)  

    So anyway, right now just anxious to get going on all of this.  Will post an update later!  Thanks for the comments and caring.  I do appreciate it!  :)

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited September 2011

    Suze, I was just thinking a day or two ago about what I'd do if I had to have chemo or another treatment that was going to decimate my hair, and I think I'd also get it cut quite short first. I've never had really short hair but I've admired it on others and wanted to try it. (DH says I don't have the right facial shape for it, and he's probably correct.)

    But if one's going to lose it all anyway, seems like it would be less of an adjustment to go from shorthaired to bald. Also, I think it would be more emotional to have those long tresses falling out than just short little bits.

    A few years ago I met the actress Shelly Fabares -- long story -- and was able to sit down and talk to her for about a half hour. She had colored her hair a rainbow of different colors. Turns out she was very ill in 2000 and decided that she was going to live the rest of her life on her own terms. Having been a performer since a young age she always had to appear the way others wanted her to appear, so taking control of her appearance was Number One.

    You can see some pictures of her wild 'do here:  http://www.starpulse.com/Actresses/Fabares,_Shelley/gallery/SGS-002521/

    At the time it was even more outrageous, with green and purple and blue.

    So think of Shelly, and have fun with your hair for once! 

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011

    Thanks, for the Shelly info... just sitting here doing 1st round of chemo....



    Meeting with oncologist today was hard. I had not really been informed yet about seriousness of my condition. Apparently my cancer is stage IV. Chance of cure not very good. But she did hold out slight chance... so will seize that and hold on to that... :-)

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited September 2011
    Suze, so sorry for the bad news.Frown All the more reason to go wild with your hair, right?
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  • momofthree2011
    momofthree2011 Member Posts: 39
    edited September 2011

    Susan,   I will be praying for you! (((Hugs)))

    Debbie 

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited September 2011

    Suze, I've been following your thread.  I am so sorry for the bad news you've received.  It must be so shocking, especially since you started out with DCIS.  Did you have a sentinel node done before your mastectomy, and if so, did it show anything in the lymph nodes then?

    Hang in there and hold onto hope!  <HUGS>

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited September 2011

    so sorry to hear your recent news.  I  had been following your posts with open jaw.  I love your sense of humor.  I hope chemo is doable for you.  Will be thinking of you.

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  • mikita5
    mikita5 Member Posts: 373
    edited September 2011

    Suze: I'm just reading all posts on your page. I  am so very sorry you're having to go thru this again.. You went from DCIS to stage IV...just a horrible nightmare.. I hope the chemo works and hope it works quickly.

    I'll definitely keep you in my prayers!  Mega hugs coming your way!!

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  • Lady-di
    Lady-di Member Posts: 150
    edited September 2011

    Susan, been following this thread and just had to let you know that you are in my thoughts and prayers. They seemed very positive about that new chemo drug for you. hope its still on track.

    Will be thinking of you!!

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011

     Thanks to everyone for their positive comments, support and prayers.  I can't tell you how much it means to me....  and I so believe in the power of prayer~!  Thought I would just give you all an update taken from the notes the doctor gave me.

     Essentially she said I have Matastatic Breast Cancer, stage IV,  It appears to have ony spread to the skin, and into some lymph nodes, so is limited (it was asked if I had the sentinel lymph node tested when I had my mastectomy.  I did and it was negative for cancer).  She also pointed out that there is not  a test for cancer cells in the blood, so who knows, but hopefully the chemo would knock any out that are there.  The cancer showed weakly for progesterone and estrogen receptors three years ago, but now shows negative.  It is positive for Her-2-neu.

     She prescribed multi-modality therapy, a mixture of chemo therapy, Carboplatin and Taxotere, and biologic therapy, Herceptin.  Will repeat every three weeks, 4-6 treatments.

     She was not positive regarding the chances of it being curable; but did say that if she did not consider it having a chance of being curable, she would not tell me that it did.  I have to say, I didi appreciate her bluntness.  Even if not curable, she did say it was likely I could have several years left, with treatment... just not several decades.  :)

    So.... feeling ok now; very weepy at the slightest thing.  I suppose that is allowed, under the circumstances.  Got about 2-3 weeks left with hair'; my daughter and her friends have requested to dye my hair some godawful color before it is shaved off.  I have promised to do so.... LOL  This is the chance to experiment... I may like purple roots that fade into aquamarine blue at the tips... Who knows?  LOL   And they are still holding out hopes that I will agree to buy a pink wig.  Not sure, but I think I have my limits on that one.  Regardless, going super short by the end of next week.  You have to find what fun you can in all of this!~

    Friends and family here are taking it as well as can be expected.  I am so fortunate to have a strong support network here at home.   It may sound crazy, but I feel blessed.  It seems like worst case scenario is a few more years with treatment.  I can handle that.  Best case would be a complete cure.  I can really handle that!  :)

    THanks so much to you all.... if there is anyone who would like to talk to me in person, regarding any of this, feel free to call me.  If I don't answer, leave a message and I will get back to you.  Just can't promise how quickly that will happen!

    Cheers!

    Susan

    801.231.0879

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  • suze1229
    suze1229 Member Posts: 13
    edited September 2011

    One more thing if any of you are interested... my baby sister set up a facebook page here for me... It was so sweet of her.  If any of you are curious about more details, etc... you can join here!

     http://www.facebook.com/groups/234514599927686/

     Thanks!

    Susan

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited September 2011

    Wow, know we are  here thinking of you.  What a shock this must all be to you and your family.  Sounds like you have a great support in your family and that is such a good thing.  Gentle hugs.

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  • iLUV2knit
    iLUV2knit Member Posts: 157
    edited September 2011

    Your strength is admirable, Susan!!  I say dye your hair any dang color you want--heck, do ANYTHING you want-- this is YOUR time!!  I always wanted to have brown hair after being blonde my whole life.  I am thinking I will go brown just before my MX, just because I want to!  You have inspired me to do it :-)  maybe I will get some wild tips put in also....who knows what adventurous mood will strike while sitting in the chair. 

    I will be joining your facebook and saying prayers for you daily.  Keep your sense of humor and sprit.

    think of you,
    Sue

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited September 2011

    So sorry for the diagnosis, but so happy for you that you have such a wonderful support system!!!   Dye that hair!  I just went from being blonde to brunette after being blonde pretty much my whole life.  Time to do things that you normally would have never done! 

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  • Rowan47
    Rowan47 Member Posts: 151
    edited September 2011

    Suze, I have just been reading your posts..what a nightmare for you! I am sure your positive attitude and humour will be invaluable to you during this time. Re short hair..I had almost waist length hair b4 chemo. My oldest daughter cut it twice b4 it fell out so that I could get used to the change. My hair is now growing back (about half inch) and I really love the look!  Big change, but don't want to grow it long again. I will be thinking of you, and will also join you on FB. Chin up, my sweet xx

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