Regional Recurrence

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Mimsi
Mimsi Member Posts: 21
edited June 2014 in Triple-Negative Breast Cancer

Has anyone had experience with regional recurrence?  I had a mastectomy in October 2007..node negative...followed by 4 rounds of Taxetere and Cytoxin and reconstruction.  I was clear with tumor markers very low, but I begin having more pain in the side of the breast. I told my onc about the pain in early February and was told that no lumps were felt and it was probaby due to the swelling from lymphedema (slight case).  I also have fibromyalgia (25+ years) and am accustomed to some pain. By early April, I was having the same deep aching pain and tenderness that alerted me to the original tn cancer in 2007 (found only because I insisted that the pain was real and got ultrasound even though not palpable).  My onc immediately sent me for a mam and ultrasound and the radiologist did 2 ultrasounds to get a better view of something and concluded it was a benign cyst (got the letter and everything).  6 weeks later with I went for a routine visit to my breast surgeon I told him. He had not gotten the radiology report so he did his own ultrasound and thought it looked suspicious. He did a core biopsy and it was TN recurrence in my axillary lymph nodes.. I am having all the axillary nodes removed on Monday and radiation. My onc is so concerned she wants to do chemo as well. She said that my particular tumor biology is "nasty".   We did PET (first one) and Breast MRI and full body CT and no mets were found 2 weeks ago.

Anyone with a similar story or anyone with thoughts on this??

 I am beginning to be very concerned as this has been at least 6 months and I am afraid that it will get out into my system.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    Mimsi,

    I'm sorry you are having to go through all this again.  Hopefully there is not a lot of involvement.  I've had numerous local recurrences in the last few years.  (I now have skin but I'm a rare TN so you can't go by my history) The best news is you can have surgery and remove this. I would have to say if it was me I would do chemo first and do rads last.  Treat the whole body not just the spot. 

    I understand your fear of it spread in your system.  It depends on the make up of your disease if it truly wants to move to distance mets.  I have extensive bc and no mets to organ/bone after 3 1/2 years.  It sounds like your disease has stayed local if you thing it has been around that long and this is a good thing. Maybe it does not want to move beyond this area. Ask your doctor does she mean by nasty that you have a basal tumor?

    I hope you get into treatment quickly and your surgery gets all clear margins.

    Flalady

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  • Mimsi
    Mimsi Member Posts: 21
    edited June 2009

    Thank you, Flalady.  I am sorry that you have had such a hard time.  I had the mastectomy to prevent local/ regional recurrence and the nodes were clear. So, it was a shock to me, my onc, and my breast surgeon. According to my onc, less than 5% of mastectomy patients have a local or regional occurence.  She had seen 2 cases including mine and my surgeon had none in his practice.   I will ask what she means by particularly nasty biology. She has said that on more than one occasion. It is a little frightening when your onc hugs you upon sight then gives you all the facts with a sad face and hugs you many times.  She actually got up in the middle of our meeting to call the surgeon to ask him to expedite things. She said if it were in more than one or two nodes she would want to do chemo before rads. The radiolog.onc said they might do them concurrently.  She took my case to the tumor board last week for input. She said she is really wanting to do chemo again because she is so afraid it will or is in my blood stream and we won't know until a million cells forms a tumor large enough to see.

    I will ask about the basal cell but I think she is talking about the DNA and mitachondria biololgy.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    I know what you mean about the hug thing....nice but upsetting at the same time.  Your doctor's seem to be on the ball and they seem to truly have concern for you.  This is a wonderful thing..because they more they become personal attached to you the more they will fight for you. I hate to say that but I have found it to be true. You are lucking they are willing to go back in and take more nodes they usually do not do this.  I don't know if I would do both rads and chemo at the same time.  That is really hard on the body. Your right about local recurrences are more rare.  I have three close friends on the site here that are also TN ladies.  We are all three years or more out and still have local disease up to this year. Two now have other mets. With TN's they never really know what to do about us we all are so different.

    Please keep us update with what you have decided to do. Let me know what chemo they have chosen. I've done ten different ones and can share some support on side effects. God Bless and saying prayers that they will get all the nodes out and treatment will be gentle. 

    Flalady

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  • Mimsi
    Mimsi Member Posts: 21
    edited June 2009

    Thanks. I will update you in a few days. Good luck to you as well.

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  • Joan2844
    Joan2844 Member Posts: 21
    edited June 2009

    Mimsi,

    So sorry you are having to go through this disease again. The fact that no mets have been found is wonderful news, and I am very glad for you.

    I had TAC, a lumpectomy, rads and Xeloda my first time around. Within a year later, more cancer was found in the same breast -- I had a mastectomy, Taxole+Gemzar and some carbo. 

    I applaud your onc for being very aggressive, and encourage you to follow his/her advice. Ttrip-neg is very responsive to chemo (more so than most other bc's) AND they have found very good results with some newer drugs in the past year (check out platinum drugs and PARP inhibitors).

     Good luck to you! As much as you don't want to hear it, be aggressive with this disease. It hits hard and it sucker punches.  

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  • Mimsi
    Mimsi Member Posts: 21
    edited July 2009

    Hello all,

    I wanted to update Flalady and Joan on the treatment. I had surgery that removed 18 nodes of which 17 were normal. The one node was positive TN, Grade 3, Nottingham score 9. I will be having chemo starting Monday the 13th. This time it will be AC then Taxol. Last time it was Taxetere and Cytoxan.  I will have 4 rounds of AC once every 2 weeks then 4 rounds of Taxal once every 2 weeks and then radiation.

    I am really upset by something I read in the ASCO report on the PARP I inhibitor.  It said that TN diagnosed with recurrence have a survival of less than 1 year. That is certainly not the case with you Flalady. I hope this won't be the case with me as well.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Mimsi

    I so happy you gave us a update.  Thankfully but no way....recurrence ladies even TN have been around for many years.  Most of us are pushing year five mark like any other receptor status. The doctor's don't know all so hang in there lady!

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