Forum Discussion

twhi8749's avatar
twhi8749
Member
11 years ago

Second Re-excision

Finally, my second re-excision is booked for 24th February as my margins were not clear after my lumpectomy.  I had a good discussion with my breast surgeon who did say it would affect the look of my breast (it looks great after my lumpectomy).  It will be a relatively simple operation in which he will remove the  scar tissue and then take further tissue to get clear margins.  With the scar tissue being removed it will leave a deeper dent on the top left of my left breast.  

He also said that as the tissue taken previously was larger than expected (18 mm) he could not be sure what the outcome would be, but hopefully he would not find something untoward and that my cancer would still be in situ and non invasive.

He also said that at present he did not feel that a mastectomy was warranted as the cancer is insitu and non invasive (even though my gut feeling is that I would prefer a mastectomy) as he feels  a good outcome can be and will be achieved.  My husband agrees with my surgeon's advice and I guess I can see where they are coming from but I worry about the presence of comedo narcrosis and what this means for future recurrence.

I also asked about my hormone receptor status.  He said that pathology does not do hormone receptor status for insitu non invasive pre cancerous DCIS which I find very strange as he did mention I may have to have hormone therapy (along with radiation which he told me I will need!)  I am now wondering if the pathologist did not test my hormone receptor status because my margins were not clear?  ( I would have also thought my Hormone Recetor Status would have been shown on my first biopsy report when I was diagnosed with DCIS)

I wish I knew what my hormone receptor status was as I feel I don't have all the information I need re second excision versus mastectomy especially as I have comedo narcrosis present.

When I asked about plastic surgery, if my breast was badly deformed with the removal of the scar tissue and extra tissue, my breast surgeon said that this was a possibility but more so to my right breast (to match the left).  My left breast is larger than my right (this may be due to my recent operation)  and one only hopes my left breast will shrink during radiation (though knowing my luck it will probably grow!)  

I know I am probably over reacting and am being very emotional but honestly I would prefer to have both breasts lopped off and not have to worry about what my future holds for recurrence.  I'd also love to avoid radiation but this is not possible because of the presence of comedo narcosis in my left breast.

My husband thinks  differently from me.  His view is "we will take one step at a time and worry about things later".  That's really not me.  I'd like to know where the steps may lead and what my options/outcomes are before making a decision!  

I will have that second re-excision but  wish I had more information about my Hormone Receptor Status and what my recurrence rate might be - it seems strange that you don't know these until after you have made a decision to have a second re-excision rather than a mastectomy!

 

 

  • ro_obrien's avatar
    ro_obrien
    Member
    11 years ago
    Hi Jessica, thanks for your information. I have not been accessing the website til now as I am recovering from my DIEP I had on 20/2/15. The result so far is great and I will hopefully discharged by the weekend.
  • JessicaV's avatar
    JessicaV
    Member
    11 years ago

    Hi Ro-obrien, it sounds as if you had a good team who explained things well and helped you towards making good choices.

    But they don't seem to have understood what Estrogen receptors are. They are not precursors to DCIS at all.

    Estrogen receptors, Progesterone receptors and HER2 receptors are parts of the outside of each tumor cell, like little docking stations on a spaceship that attract Estrogen, Progesterone and/or HER2  respectively to them, and the Estrogen, Progesterone and/or HER2 goes into the tumor cell and supports and speeds up their growth. Normal cells have minimal numbers of each type of receptor. But the more of each type of receptor, the more Estrogen, Progesterone and/or HER2 growth hormone can hook onto the outside of the tumor cell, get into the inside of it, and contribute to making your tumor grow. And they also work on any metastatic cancer cells that are spread in lymph or blood into lymph nodes or new distant tumor sites after your tumor is removed.

    So if you have high numbers of Estrogen receptors on each cell, you are Estrogen Receptor positive. The same applies to all the little cells that may have been sloughed off by the cancer before, or during surgery, esp if clear margins were not achieved and can grow into new tumors in the futore if you are unlucky. This is much less likely with DCIS because it is contained in the duct, but can happen if it is highgrade and has already broken through the duct membrane in tiny spots, or if margins were not clear, or with HER2 pos. So having tamoxifen or Aromase Inhibitors for 5-10years after will cut down the estrogen in your body for that time and help stop any tiny metastatic cancer cells that may well be in your lymph or blood or in your body somewhere, from growing for so long there is a good chance they have  given up and died. Similarly, if you have high HER2 receptor levels, they may treat you with Herceptin or Perjeta, which fill up the receptors for that biochemical so HER2 growth hormone cannot attach, and the cell does not multiply, and then flags it for your immune system send macrophages to come and destroy the cancer cell.

    Hope this helps.

     

  • ro_obrien's avatar
    ro_obrien
    Member
    11 years ago
    Hi. I had a high grade DCIS left breast mid November 2014 and had 2 wide excisions. I had a margin of 3 mm but my surgeon preferred a 10mm clearance. The size of my DCIS was not picked up on mammogram or ultrasound and had 35 mm of tissue excised. The treatment plan was wide excisions and radiotherapy. however rather than having a third excision I opted for a skin saving mastectomy (SSM) mid January and will be having DIEP this Friday. The pathology post mastectomy showed nil cancer and the sentinel node was benign. I do not have to have any radiotherapy. I am happy with my decision to have a mastectomy after much consideration and family support. But like you I initially wanted a double mastectomy and if I had the opportunity to have an immediate reconstruction I would have proceeded. However I was unable to have an immediate reconstruction as my breast surgeon wanted to operate asap. I have a large expander and the expander was filled with fluid equal to the weight of the breast tissue removed at the time of surgery. Now I am glad I only had the single mastectomy. Yes, I do worry I may get breast cancer in the Contralateral breast but I have a 90% chance that I will NOT get it.Louise Turner blogs are fantastic, supportive and informative and talks of the underestimation of grieving process for loss of breasts. My plastic surgeon was glad I did not have radiotherapy as it thickens the skin. Another reason I did not chose radiotherapy was because it was my left breast and the proximity of my heart. Also the need to go 5 days a week for 6 weeks was another consideration. Having a mastectomy is a very personal choice that can only made by yourself. My surgeon did not say whether it was estrogen receptive but as she was a very thorough and highly regarded surgeon I assumed it was not a precursor to my DCIS. I wish you all the best on your journey.
  • twhi8749's avatar
    twhi8749
    Member
    11 years ago

    Thanks Jessica - what you've written has made it very clear to me too - I really appreciate your post.  I can understand why my breast surgeon prefers me to have a re-excision rather than a mastectomy as my pre cancer cells are still in-situ.  Obviously, as my surgeon commented,  if clear margins are not obtained then we have to look my other option ie a mastectomy as my breast is relatively small (34C).  

    DCIS can be very confusing to say the least!   On the one hand, members of my team speak about cancer  and on the other hand they speak about pre-cancerous cells being in-situ.  

    I am extremely fortunate in that these cells are only in one area of my breast and that my DCIS has been caught very early.  I have been told that it is probable with comedo narcosis present my cells could become invasive  and it is for this reason that I have been given a nuclear grade of 'Intermediate'.

    Thanks again for your excellent post.

    Cheers

    Sue

  • JessicaV's avatar
    JessicaV
    Member
    11 years ago

    I remember my surgeon explaining about my DCIS and my Invasive Ductal Carcinoma, saying that there is something that changes in the cancer that allows it to break through the membrane enclosing the duct, and that until they do actually break through, they lack certain characteristics that make them a lot less of a problem. The difficulty comes when there are microscopic areas called micrometastases that have managed to break through that membrane.

    But Pathology should have completely assessed your tumor for these, and if they did not exist, then the cancer was contained within the duct membrane and that is like a country having a river or mountainrange forming it's boarders, a strong and reliable boundary.

    He said this was why they worry far less about DCIS than about IDC. Then there is a second level of invasiveness which is demonstrated when the cancer cells manage to break through the  membranes containing the whole breast, which is a much more solid physical barrier again.

    I had only 0.1ml margin under my tumor, but apparently this is the breast facia membrane, and so long as it was not pierced by micrometastases, I was told I could count on this to actually make a more solid barrier  to the cancer than the ordinary 1cm margin of tissue within the breast, where there is not a membrane of this type involved.

    I find understanding how this works, and why  I should trust that 0.1mm is a clear margin in one situation but 0.5mm is not a clear margin in anothe situation, has helped me make sense of my surgeon's advice.

     

  • Chorsell's avatar
    Chorsell
    Member
    11 years ago
    I specifically requested the test - based on my pathology and size ( my lumpectomy was 3x7x5 cm so a fair chunk) without clear margins and mastectomy was recomended. I elected to have both off based on family history. Pathology was solid papillary and comedo with necrosis. I also had sentinel node biopsy. Good luck I hope the information is useful. Regards Chris
  • twhi8749's avatar
    twhi8749
    Member
    11 years ago

    Hi Chris, Thanks  for your information and links.  I do have a copy of my pathology report from the lumpectomy which tells me that it is in situ (ie still within the ducts) and that there is no evidence of invasive malignancy. I have intermediate DCIS which is cribriform and solid with comodo necrosis.  There is focal apocrine changes and epithelial hyperplasia. Calcification is focally present.   The pathology report does not show my hormone receptor status.

    I will discuss further with my Breast Care Nurse re Hormone Receptor Status.

    As you say, you do need to be fully informed but I suspect because I am in situ and non invasive my breast surgeon is not being overly aggressive in my treatment.  

    My Mother and an Aunt (on my Father's side) both had mastectomy's in their 60's (like me).  My mother is still alive (85 years old) though suffers from vascular dementia.  She also suffered embolisms in her lungs, heart problems and rhematoid arthritus (all which really affected her life) thanks to radiotherapy 25 years ago (thus my fears which I know are unwarranted because radiotherapy has improved tremendousy since then!)  

    Sue