I wish I could say I'm Happy

MelissaDallas
MelissaDallas Member Posts: 7,268
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

Just got diagnosed with LCIS and extensive sclerosing adenosis.  I know I should be grateful that it is not invasive cancer, but I foresee an endless cycle of tests and biopsies.  I was very sick with a huge ovarian tumor this time last year, so I started with the callbacks from the mammogram less than six months after I had gone back to work. I have been a basket case and hugely anxious and not sleeping.  I get very good care through our large county hospital - I am uninsured, but it took six months to get to the diagnosis with the lag between mammo, diagnostic mammo, genetics, ultrasound, stereotactic biopsy, MRI and excisional biopsy.  My family was so relieved that I don't have "cancer" cancer but if I did at least it would be something I could do something about.  Meet with the medical oncologist soon.  Wonder if I can tell him that when I hit three biopsies in five years I will have had enough and I want a mastectomy?  

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  • Jejik
    Jejik Member Posts: 191
    edited May 2012

    Cancer is cancer. And being uninsured must compound the stress and anxiety enormously. I would talk to your oncologist aboout your options before you get too discouraged. My thoughts are with you.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    I am very fortunate that I am in a program where I pay a minimal copay for treatments/visits.  I'm just kind of "procedured" out right now.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited May 2012

     Mellissa

    That totally sucks,  But the in situ is a blessing.  I have DCIS and was strongly considring a mastectomy to get it all behind me.  Have decided on the most conservative route of a second lumectomy and 5 weeks of rads after a MammoSite failed. 

    But the experience of mastectomy patients is not a horror story and not to be feared when weighing the pros and cons.  I have had this thread and found it to be so valuable in making my decision.

    What is the experience of the surgery for mastectomy?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    I just know I can't take too many six-month stretches like the last one has been.  I probably would have dealt with it a lot better if I hadn't just gotten over being so sick.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2012

    Awww, Melissa, this is just so hard.  It really does wear down your batteries.  I encourage you to browse through all the LCIS-related threads, because there are many, many discussions where we share our experiences and how we came to our decisions about what to do on hearing we have LCIS. Many choose surveillance; some choose prophylactic bilateral mastectomy. I'm in that second group and have never once second-guessed my decision, but as you'll see written over and over, we are all different and the decision is personal. If you have the patience to look through old threads, I think you'll find lots of different and very helpful perspectives as you process what you've learned and what your MO tells you.  Best wishes as you move up this learning curve. It's a steep one!

    Carol 

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    I will.  Thank you.

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  • msippiqueen
    msippiqueen Member Posts: 191
    edited June 2012

    I am so sorry I have taken so long to read your post!



    Some doctors realize that the repeated followups, testing, biopsies, time, expense, hassle and commitment involved with breast preservation can be incredibly taxing and will offer a PBLM if they are sensitive to a woman's desires and needs.



    Insist on it. At a teaching hospital there is a chain of command. A medical ethicist, once found at teaching hospitals (and may be yet), could be helpful. There may be an online resource.



    Surviellance is generally recommend as standard care, but the doctors are advised to consider the patients needs and desires as they relate to choosing a mastectomy. I wouldn't be suprised if a malpractice or insurance lawyer made sure that was inserted.







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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    Melissa---I just sent you a PM.  From someone who has been dealing with LCIS a long time now (almost 9 years), I can tell  you it does get easier with the passage of time. An "endless cycle of biopsies" is not  automatic with an LCIS diagnosis; I'm a prime example of that------I haven't needed any further biopsies or lumpectomies in all these years. The high risk surveillance isn't for everybody, but it works for me.  It gives me peace of mind to know I'm being watched so closely.

    anne 

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  • MoodyMoo
    MoodyMoo Member Posts: 30
    edited June 2012

    Anne...I'm new to these boards, but was comforted by your post.  I have just been diagnosed with LCIS and ADH, and am struggling with the continuum of treatment options, as the idea of more core or excisional biopsies just doesn't sound too much fun right now.  I've had a lot of the same thoughts as Melissa.  For now, I'll wait for the 6 month MRI/Mammo follow up, and cross that bridge then.  Thanks...

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