New Diagnosis - What questions to ask?

derhub
derhub Member Posts: 2
edited June 2014 in ILC (Invasive Lobular Carcinoma)
My mother received the ILC diagnosis yesterday (10/1/09) and is picking out coffins (emotionally.)  We are fortunate to live near a large medical school and teaching institution and have an appointment with a surgical oncologist Monday afternoon with UT Southwestern Simmons Cancer Center.  I am no doctor but I feel extremely positive about the pathology report.  Not saying there could ever be good cancer news but her largest mass is 5mm and is classified as "infiltrating lobular carcinoma, classic type, nuclear grade 1."  I unfortunately have been the google fiend for the last 24 hours and have no clue anymore.  Is smaller better from a prognosis perspective?Mom is young (early 60's is young in my book these days!), vibrant and full of life.  I just want to know what to ask, how to help, support and care for her as she has done for us for so many years.  How do we know what questions to ask?  Is the 3rd and 4th opinion worth it?  Go with your gut and a resume to decide?  If treatment options are laid out, how do we question the surgeon or suggest alternatives? 
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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2009

    derhub ~  I'm sorry you have a reason to be here, but I'm glad you've found us.  As you've may have already figured out, Grade 1 means your Mother's bc is less aggressive than if it had been a Grade 2 or Grade 3, and 5mm is a very small lesion.  So, from what you've been able to share so far, your Mother's prognosis sounds like it will be excellent.  She'll need some treatment, but so far everything you've said is very positive and by no stretch of the imagination doom & gloom.

    When it comes to support, be sure that someone goes with her to each of her appointments.  We're all in such shock with this kind of diagnosis, we tend not to be able to concentrate or hear everything that's said.  She'll need someone to ask questions and fill in the gaps later.  Other than that, just let her know that you're there for her, whatever her mood is at the moment -- and they will be up and down and all over the place for awhile.

    I believe you can find lists of questions to ask her oncologist and surgeon within the major topic headings here.  One thing to keep in mind is, while we all want the bc out ASAP, it's usually not something that has to be taken care of tomorrow.  You have a few weeks to be sure you find the right breast surgeon, and that she has time to consider any options they may give her.  Other than that, yes, by all means seek at least a second and maybe a third opinion.  Not all doctors will recommend the same treatment, and on top of that, you certainly want one she can relate to and trust.  So encourage her to get a second opinion.

    Hope that helps, and I wish the very best for your Mother, and for you, too  ~  Deanna

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  • j414
    j414 Member Posts: 321
    edited October 2009

    Wow, your mom is very lucky. ILCs are generally not diagnosed when they are so small because they usually elude mammographic detection and are only diagnosed when there is a large palpable thickening or lump - you're optimism is warranted. I had an almost identical diagnosis several months ago and I'm doing great today.

    Nuclear Grade 1 is the best possible grade - it is a slow growing cancer and the cancer cells closely resemble normal cells. With BC cancer, smaller is always better and it doesn't get much smaller than 5mm - the radiologist who found that deserves a medal! 

    A couple of things to consider: your post seems to indicate that she has more than one mass - will she be having a lumpectomy or mastectomy? If she opts for a mastectomy, will she pursue imediate or delayed reconstruction?  Ask about each (the pros and cons of both) in light of your mom's age. Ask the surgeon if he works with a specfic oncologist, radiation oncologist etc. After the surgery, your mom will meet with an oncologist who will devise her post surgical treatment program - e.g. radiation, chemo etc. and I think the team approach works really well. All of my doctors were from the same hospital and they were all involved in my treatment plan, which made the entire process seamless and extremely manageable.

     Finally, I'm not familiar with UT Southwestern. MD Anderson is one of the the top cancer facilities in the country and the foremost lobular expert is there (I will look for his name and send it along). Your post seems to indicate that your mom has more than one mass - if you're considering a second opinion I would suggest making the trek to houston. I have been told that lobulars can be a little tricky, so I would definitely lean toward someone who has a lot of experience with this type of tumor.

    This book also breaks down the entire process - surgery, adjuvent therapies, oncotyping, tamoxifen etc.

    http://www.amazon.com/Breast-Cancer-Survival-Manual-Fourth/dp/0805082344/ref=sr_1_23?ie=UTF8&s=books&qid=1254549674&sr=1-23#reader 

    Let me know if you have any questions,  

    Best J.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    some good news to hang onto:  my mom had ILC (negative nodes, stage 1 or 2, I can't remember), lumpectomy, radiation and tamoxifen, and is now a survivor of almost 23 years and doing well at age 80, so there's lots of hope. I was diagnosed with LCIS 6 years ago, lumpectomy, took tamox 5 years, do high risk surveillance and now take Evista and am doing well.

    Anne

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  • Merilee
    Merilee Member Posts: 3,047
    edited October 2009

    Your mom may not even need chemo, If no nodes are involved and they get clean margins during surgery. There are natural alternatives to Tamoxofen as well ( used when tumors are estrogen possitive).

    Look on the Natural girls thread to learn about those. Yes 3rd and 4th opinions are worth getting as there is a wide disparity of opinions about best practice. Mom has to learn all the options and then follow her gut.

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  • lauri
    lauri Member Posts: 267
    edited October 2009

    Following up on J's comments on "immediate or delayed reconstruction" -- I was 61 at diagnosis and decided to go with NO reconstruction after mastectomy.  It's a personal decision, but for me avoiding additional surgery was worth being lopsided when I forget to put in my fooby (from WalMart)  Just make sure she realizes everyone will still love her with two breasts, one breast or no breasts.

    And as Deanna suggests, somebody should go with her to appointments to be a second pair of ears.  In addition she could take a tape-recorder so everyone can listen later if there's some disagreement about what it was the doctor actually said. 

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2009

    derhub ~  If you ever check back here, please update us on your Mother.  Hopefully, no news is "good news," -- meaning things are moving along with her treatment with doctors she likes, and she is feeling much more positive and hopeful about everything.  Please let us know how she's doing!  Thinking of you ~ Deanna 

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