recurrence after tram/dcis

seeknpeace
seeknpeace Member Posts: 259
edited March 2014 in Breast Cancer #1
Hi, I am an old timer but have been inactive for a while. I was dx in Jan, 2004, with dcis in my rt. breast, hormone and pr. negative, high nuc. grade 3, comedo subtype with extensive necrosis. And it was 2.5 c.m in size, so it was large and ready to rock and roll.

Had to force the biopsy as the microcal. looked benign, well rounded and spaced apart. I believe in my heart I would not have survived had I waited the 6 mo. There was so much necrosis it had to break out.

Ok, that was the dealio. Due to family history, grade of cancer, having negative hormone/prog cancer they took both. I had a TRAM reconstruct.

I have had no tests other than the oncologist exams since surgery. Was dx with MS and a possible brain tumor last year and my mind just had no idea which thing to deal with.

Had a mammo Thurs. as my onc. said that they are starting to think that trams should do it now, as well as mri. I have an MRI later this month sched.

I didnot go to the same facility for my mammo for personal reasons. They found calcifications in the scars of the breast that had cancer, which they wanted to do the 6 mo thing and of course I said hell no,(had to do that the first time too). Told them they could biopsy, or the other place or Italy, but it would be biopsied. Period.

So a biopsy is planned for Monday.

Here is the thing, I just have this gut feeling that there are some new studies on DCIS, at least high grade. I read an article this past week that is recommending chemo for ALL grades. And with the new thoughts for mammos for trams, I just wonder if anyone knows of any new information or if anyone here has had any experience such as this.

I have been having pain close to the site of the scar area, in the rib area, for a year or more. I thought it must be due to node removal and I guess it still could be. I am scared. I was told that a very small number of ppl who have microcalcifications have cancer, and now a small number of ppl who have trams has recurrence and a small number of ppl with dcis have recurrence and on and on and on and I want to vomit.

This site has always given me more information than anyplace else.

Whatever it is, no matter how bad, I want to hear it. You can email me privately if you want. And before you do, thank you from the bottom of my heart.

Jan [email protected]

Comments

  • CatheS
    CatheS Member Posts: 21
    Today I am 50
    Thank you for letting me have this part of my life, this experience, this transition to something I had no idea would let me realize the parts of my life I was overlooking.

    I may be in debt (up to my eyeballs and then some), out of work and still recovering from the second of two occurances some two plus years later. But how I choose to live this day and the next are up to me.

    Thank you.
  • I do not have any advice or knowledge to help you, but I wanted you to know that I read your post and am wishing you well. Your strength in dealing with your onc.s will surely help all of us as the medical profession finds out that we not only care about our health, but are prepared and informed to do something about it! Maybe there is a certain amount of stirring up the waters that needs to be done in order to seek peace. Hope you find it and soon.
    Best wishes,
    Joyce
  • survivor51
    survivor51 Member Posts: 276
    I sent you an email on this site and did not use the aol email. My prayers are with you. Angela
  • 3cbrca
    3cbrca Member Posts: 206
    Hi Jan
    My best BCB (Breast Cancer Buddy) has had cancer on both sides - the first was a Stage I with an odd morphology -she had a lat flap. She just had left cancer (7 years later -DCIS) and had a Tram flap. Her sister now has breast cancer and with different morphology in the nodes than the primary tumor. She also works in the Cancer research field and is much more conversant in new tx than I am. If you don't mind I'm going to copy your message and send it to her and see what she says and see if she can recommend some sites with current info. (I'd like to get her on this site but works so much)
    Sheilah
  • 3cbrca
    3cbrca Member Posts: 206
    Hi Jan
    My best BCB (Breast Cancer Buddy) has had cancer on both sides - the first was a Stage I with an odd morphology -she had a lat flap. She just had left cancer (7 years later -DCIS) and had a Tram flap. Her sister now has breast cancer and with different morphology in the nodes than the primary tumor. She also works in the Cancer research field and is much more conversant in new tx than I am. If you don't mind I'm going to copy your message and send it to her and see what she says and see if she can recommend some sites with current info. (I'd like to get her on this site but works so much)
    Sheilah
  • seeknpeace
    seeknpeace Member Posts: 259
    3cbrca said:

    Hi Jan
    My best BCB (Breast Cancer Buddy) has had cancer on both sides - the first was a Stage I with an odd morphology -she had a lat flap. She just had left cancer (7 years later -DCIS) and had a Tram flap. Her sister now has breast cancer and with different morphology in the nodes than the primary tumor. She also works in the Cancer research field and is much more conversant in new tx than I am. If you don't mind I'm going to copy your message and send it to her and see what she says and see if she can recommend some sites with current info. (I'd like to get her on this site but works so much)
    Sheilah

    Hi Sheilah,

    I would love for you to share my info with her, even my email if she would want to contact me. I just wonder about any new info or research.

    I went to have the biopsy today and they could not get the area on the screen so they could direct the needle. It appears that it is more over in the arm pit area and higher up so if it is in scar tissue as they say, it is inside where I cannot see it. What that area feels like to me is where the fat that was moved in during the tram, not like a sewing scar. I am now more confused. They pushed up the MRI to the 19, it was not until June, and I will have to go into the hospital for the biopsy. So, the only thing that I gleaned today is that I am just a bit more worried.
  • mmontero38
    mmontero38 Member Posts: 1,510
    Hi Jan:
    I am a little confused, did you have a mastectomy? If so, how could the cancer come back in that breast? I would assume it may be scar tissue. I also had a right radical mastectomy and tram flap reconstruction. Please keep us posted on whatever news you may hear. I wish you well. Hugs and Prayers to you. Lili
  • seeknpeace
    seeknpeace Member Posts: 259

    Hi Jan:
    I am a little confused, did you have a mastectomy? If so, how could the cancer come back in that breast? I would assume it may be scar tissue. I also had a right radical mastectomy and tram flap reconstruction. Please keep us posted on whatever news you may hear. I wish you well. Hugs and Prayers to you. Lili

    Hi, I am not sure if you are meaning that you know that if it comes back after a tram it mostly comes in a scar or if you are thinking that this is palpable and what we feel is scar tissue. Which by the way is considered one of the biggest draw backs of trams. Discerning what is scar tissue, necrosis or recurrence.

    After you have your mastectomy, you still have breast cells. They are in the scar area, around the area of the breast, high up in rib area, closer to the collar bone and under your arms. Breast tissue is not just confined to the mounded area.

    What brought this about were microcalcifications found in the same breast that was cancerous before on the mammogram, in an area too close to the underarm and too high to get a good enough picture with an on screen guide to biopsy. So the biopsy will have to be done surgically.

    So, yep, had the bilat mast. and bilat tram. and now this. I met a woman at an event who also had a bilat. mast/tram and 7 years later it came back in her previously cancerous breast. There seems to have become a different thought pattern about trams having mammos, and probably this is two reasons why. I am thinking that some type of research has been done regarding this, DCIS and recurrence, or something. I did see an artcle where they may start recommending chemo for all stages of bc. They have done some research but I cannot find it.
    .

    Jan
  • ladybluepgh
    ladybluepgh Member Posts: 76
    hi..I'm not sure if mine is the same thing since I didn't have reconstruction..but my surgeon is doing a biopsy tomorrow on 2 lumps he found under my mastectomy scar..I'm also having the other breast removed just in case...I'm scared as hell that the beast is coming back..but I will let you know what the results of the biopsy are...not sure if this will help or not...but I sure hope yours comes out ok...take care, lady
  • seeknpeace
    seeknpeace Member Posts: 259

    hi..I'm not sure if mine is the same thing since I didn't have reconstruction..but my surgeon is doing a biopsy tomorrow on 2 lumps he found under my mastectomy scar..I'm also having the other breast removed just in case...I'm scared as hell that the beast is coming back..but I will let you know what the results of the biopsy are...not sure if this will help or not...but I sure hope yours comes out ok...take care, lady

    yes, it certainly could be. With the mastectomies you are left with scar tissue that is sometimes hard to tell if it is just that or recurrence. I think that with reconstruction it would make sense it may be more difficult to feel. Of course fat does not get cancer and that is what a tram is made from. It is the breast cells that you and I both had left behind;they just cannot get them all.

    I could feel lumps there but I just thought everything was scar tissue. And when they sent me for a mammo, I was like, what a waste of money and time. However, microcalcifications did show. That is what happened the first time also. So, I have to wait and see.

    I will be thinking of you too hon. Just hang on. I hate cancer with all my being. It took my beloved father last June. I miss him so much it is raw in my soul.

    I think recurrence scares us all and metastases terrifies us. There just is no understanding why. I received a letter in the mail today that our health ins. was cancelled. My spouse is a retiree of USAir and because they filed bankruptcy, we are left paying the entire prem. for our health care, which is over 1000 a mo. now. His pension is only 1034 a month. So, the govt. has a program for ppl in this situation who have been basically screwed by their employers to be sure that they get some of their pension and help with the cost of ins. It is a federal program. They pay 65% of the cost. So we send the federal plan our 35% each month, has to be there by the 24, and then they add their 65% and send the entire payment to our cobra, which is life long.

    I have sent all my payments and they have all cleared my bank well before they needed to, but for some reason, cobra says they did not get one, some or all of it and it was late or some crap. I have to call in the morning. Every yr. it seems usair picks another comp to handle our cobra so there was a change but it has never caused this before. I cannot even go to bed, I cannot go forward with the biopsy, MRI, my MS MRI and treatment etc. I am stuck and sick to my stomach.
    Jan
  • ladybluepgh
    ladybluepgh Member Posts: 76

    yes, it certainly could be. With the mastectomies you are left with scar tissue that is sometimes hard to tell if it is just that or recurrence. I think that with reconstruction it would make sense it may be more difficult to feel. Of course fat does not get cancer and that is what a tram is made from. It is the breast cells that you and I both had left behind;they just cannot get them all.

    I could feel lumps there but I just thought everything was scar tissue. And when they sent me for a mammo, I was like, what a waste of money and time. However, microcalcifications did show. That is what happened the first time also. So, I have to wait and see.

    I will be thinking of you too hon. Just hang on. I hate cancer with all my being. It took my beloved father last June. I miss him so much it is raw in my soul.

    I think recurrence scares us all and metastases terrifies us. There just is no understanding why. I received a letter in the mail today that our health ins. was cancelled. My spouse is a retiree of USAir and because they filed bankruptcy, we are left paying the entire prem. for our health care, which is over 1000 a mo. now. His pension is only 1034 a month. So, the govt. has a program for ppl in this situation who have been basically screwed by their employers to be sure that they get some of their pension and help with the cost of ins. It is a federal program. They pay 65% of the cost. So we send the federal plan our 35% each month, has to be there by the 24, and then they add their 65% and send the entire payment to our cobra, which is life long.

    I have sent all my payments and they have all cleared my bank well before they needed to, but for some reason, cobra says they did not get one, some or all of it and it was late or some crap. I have to call in the morning. Every yr. it seems usair picks another comp to handle our cobra so there was a change but it has never caused this before. I cannot even go to bed, I cannot go forward with the biopsy, MRI, my MS MRI and treatment etc. I am stuck and sick to my stomach.
    Jan

    hi...sorry to hear about your insurance but I hope it all works out in your favor...I had the 2 biopsies and they came back benign..thank God..also had the other breast removed and they are still doing the path on that one...our doctor says that some cells could remain so its best to do path on that one also...I will keep you in my prayers...sisters we will always be...survivors til the end..take care, Lady