Newly diagnosed

Options
sillygirl16
sillygirl16 Member Posts: 12

I am newly diagnosed with invasive ductal carcinoma...triple negative...trying to decide on whether to have a lumpectomy or mastectomy. What are the chances of reoccurance with lumpectomy and has anyone had problems with their skin or breast tissue shrinking after radiation if they had the lumpectomy. Any surgeon recommendations in the Philadelphia area?

Comments

  • shiny
    shiny Member Posts: 892
    edited February 2009

    Hi there girl,

    So sorry you have had to join the bc "club" but so glad you found this site. You will have lots of experienced ladies coming on to answer your specific questions, but I just wanted to send you my best vibes, whilst you wait.

    You are at the most difficult time; having to make important decisions, having to wait to get "started" with your treatment options, and getting your head around the news.

    I didn't have radiotherapy so can't say about that. I was at a very very specialist center in London, and the BC Surgeon said, that any woman that has had  BC has about a minimum 30% chance of having another new cancer in either of her breasts at a later time.

    In my case,the odds were higher due to family history, so I opted for a double mast with immediate reconstruction. I didn't think I could relax with the "other" breast, wondering about each bump. Also,  I opted for DIEP(which turned out to be SIAE) so it was easier to get a symmetric result. I believe you can't "harvest" from the tummy more then once and since I felt I wanted to avoid implants, this was the right choice for ME.

    Whatever feels right to YOU, after you've gathered all the information you need will be the right decision. Good on you for asking the questions, make sure you ask you BC team again also.

    Hope you get the answers you are looking for. Best of luck with everything.

    take care,

    Shiny 

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

    The key is what Stage your disease is, and I would also find out if you have a basal tumor.  You will find this out from your pathology report.  A lot of doctor do not always look for basal and tell the patient.  But you have a basal tumor it will be more aggressive that would mean for me a mastectomy not a lumpectomy.  You really need to understand your pathology report and hopeful this will help you to make a decision.

    You may need to meet with a surgeon and oncologist before making your decision. This info should help you make the decision. From my experience I would go with what the oncologist says not the surgeon. They are the ones who get to see the girls with the recurrences.

    Flalady

  • sillygirl16
    sillygirl16 Member Posts: 12
    edited February 2009

    I dont have the stage yet...just that it is poorly differentiated invasive ductal carcinoma...Ki67 is 80%.

  • Ricki13
    Ricki13 Member Posts: 80
    edited February 2009

    Hi, my tumour was basal-like and so far I have had a lumpectomy and re-excision which has reduced the size of my breast by about 20% (1.5cm tumour with micro-invasion and node positive).  My surgeon and onco both feel that mastectomy will be dependent on whether I test positive for brca, and these results are some months away (and I have no family history which is unusual with my diagnosis).  If I test positive, I am going to have a bi-lateral mast.  If not, they don't see a reason to take them off as long as I have all the chemo / rads / whatever else offered.

    In the meantime, I start chemo in a week and will also do rads.  You CAN wait to make the decision for mastectomy.  This is a frightening time I know.  I'm 39 and really like my boobs so if I can keep them I will (purely vanity!).  If I have to let them go later on, so be it.

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Ricki13

    I don't have family history so my insurance won't pay for any gene test. Why did your onc suggest for gene test if no family history? My onc said if one doesn't have family history, it is very unlikely to be tested as BRCA positive. I am still wondering if I shall take the test as it is expensive....Does your insurance pay for it?

    Is your tumor micro invasion or is the node micromets less than 2 mm? Did you also have DCIS nest to the invasive IDC?

  • Ricki13
    Ricki13 Member Posts: 80
    edited February 2009

    Hi newalex

    I'm in Australia and here they have told me that all triple negs are tested regardless of family history.  Our national health system covers it so there is no cost to me or my private health insurance (except of course via my taxes which I am happy to pay ;->).  I assume you are in the US?  Because we have 'universal' health care (which yes increases our taxes) the private health insurers have much less power here than in the US (where I have also lived).

    Also, my sister has a rare form of sarcoma so they are going to be testing both of us for any similar gene mutations.  It may be we are the first generation with something amiss.  The geneticist did say that if I had not been triple neg, the test would not have been offered based on the lack of history.

    I hope I am answering your other questions correctly as I don't get all the acronymns correct some times!  I had mets in one node of 6mm and numerous spots of what pathology called DCIS surrounding the major tumour.

    Hope this helps. 

  • Judine
    Judine Member Posts: 11
    edited February 2009

    If you are under 40 when you are diagnosed, some insurance companies will cover the BRCA testing.  Mine did and I tested negative.  I didn't have much history--just a great aunt, but I have 4 sisters and a daughter so I wanted the testing done.

    I had a lumpectomy with radiation.  The tumor was near my arm pit, so cosmetically I was really lucky.  One incision for the tumor and lymph node dissection.  Just a faint scar near my armpit.  The radiation was really easy for me.  I got a little red similar to a sunburn, but that was about it.  I am small breasted and thin, so my dose of radiation was less than someone with larger breasts according to the radiologist. 

    I was told that the chance of a local recurrence was about the same for a mastectomy or lumpectomy.  However, my chance of getting a new cancer in the breast peaks at about 20%.  The chance of a new cancer is much less with a mastectomy (I think less by 90%?), but if I were to get a new cancer it would probably be near the chest wall which is more difficult to treat.  

  • HollyHopes
    HollyHopes Member Posts: 497
    edited February 2009

    Welcome dear, so glad you found us, but so sorry you needed to.  The risks of recurrence are the same with mastectomy vs. lumpectomy.  Breast tissue does shrink with rads.  The most important thing is to find an MD whom you trust and then don't second guess yourself along the way....I will keep you in my thoughts and prayers...let us know how we can help you on the journey!

Categories