Just DX 1/23/17 age 47yrs ILC Grade 1 Thyroid Cancer 10yrs ago

Farmerdd
Farmerdd Member Posts: 1
edited February 2017 in ILC (Invasive Lobular Carcinoma)

Like so many here I'm new to the group due to the DX of ILC on 1/23/17. I am small breasted, maybe a "B", very Dense Tissue. We meet with the BS (I'm guessing that is Breast Surgeon from reading other posts) a week ago. She believes we have caught it early. 6 mo ago a Architectural Distortion 19mm on my right side was found. I had ultrasound done, he was having trouble finding anything. Next MRI, nothing showed on right side but they found a cpl lumps on my left side. One was biopsied (horrific experience) came back benign, was referred to a Breast Cancer Specialist Surgeon by my Thyroid Cancer Dr. (had Thyroid Cancer 10yrs ago) Had a Lumpectomy it came back the same, benign. Was told to go back in 6 mo for another MRI plus a mamo for the right. Bilateral MRI done again, nothing showed up. Mamo showed Architectural Distortion still there, ultrasound. He found it, biopsy done by a different Radiologist (not nearly as bad). Came back as ILC Grade 1. I'm scheduled for surgery of 1/22/17

At first I was pretty optimistic that all would be well since we think we have found it early, do a simple Lumpectomy, check the lymph nods, Radiation, Hormone Therapy, boom another cancer conquered. The more research I do the more my head is spinning. Having very Dense plus "complex" Breast Tissue, as my Dr said and ILC being very hard to detect I am now thinking I need to have a Bilateral Mastectomy. If there is anyone that has been through this or has advice of articles I should read and what I should ask, tell or give to my Dr to help with making the correct decision going forward that would be great.
Thanks

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2017

    Hi Farmerdd, and welcome to Breastcancer.org,

    We're so sorry for the reasons you are here, but really glad you found us. You're sure to find our wonderful Community a helpful, supportive, and knowledgeable space to guide you through your diagnosis, treatment, and beyond!

    We're sure others will be chiming in shortly with their thoughts and advice. In the meantime, we wanted to let you know that there's lots of pieces that make up your diagnosis -- your pathology report -- and once you have all of those pieces, it'll help you make decisions. There's great information on the main Breastcancer.org site's section on Your Diagnosis, which explains each piece of the Pathology Report, and what it may mean for treatment. There's also a great page on Questions to Ask Your Doctor.

    We hope this helps! Please keep us posted on what you decide and how you're doing!

    --The Mods

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited February 2017

    At your young age, has genetic counseling been suggested? If you have testing, mutation status can help confirm your bilateral mastectomy choice as well as influence the radiation decision. There is much more than BRCA 1/2 to be concerned about so be sure you have a knowledgable professional order the analysis.

    You are also probably aware by now that ILC can be larger than scans indicate and more difficult to get clean margins with when doing a lumpectomy. Sometimes re-excision is required. You describe some less than optimal experiences already which means going 'under the knife' additional times might not be your preference!

    Congratulations on having the thyroid cancer a full decade behind you. This beast is worse, generally speaking, but hopefully you'll have a plan soon and can visit here in ten years telling your story to another newbie...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2017

    FarmerDD, I can't tell you what to do, only tell you my story. I had very dense breasts and had 5 "clear" (ha!) yearly mammos done before I found the problem myself during a regular self-exam. I had no idea that dense breasts made it harder for scans to find problems. After dx/tx and exhaustive research I learned that yes, ILC tends to hide from scans because of the way it grows, and having dense breast tissue further exacerbates the problem of locating any dangers in breasts. Finally I learned that ILC has more of a tendency to be "multi-focal"--meaning it has a higher tendency to be found/recur in both breasts.

    So that is why I decided to have a BMX. I didn't trust my breast tissue nor did I trust any future scans, since they didn't catch the problem the first time around. The post BMX pathology did indeed find some hyperplasia (meaning higher incidence of turning into cancer) in the GOOD breast. Was I ever happy I had my surgery after that report, and so was my surgeon.


    Claire in AZ

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited February 2017

    Farmer dd--

    I am also a thyroid cancer survivor-mine happened after bc. I did lumpectomy, chemo, radation and hormonals.... this worked for me-- and my surgeonand oncologist agreed. I am almost 9 years out-- My breasts are less dense now-- happens as we age apparently.. so mammograms seem easier (they think my lump was there for 7-8 years before it was detected).... the surgical decision is a very personal one-- I remember someone here saying you can always take things off, but you cannot put things back on. You can always have a lumpectomy then an mx down the road if you think it is necessary--- but if you think you will just worry all the time, maybe an mx is in order. Hopefully your docs and further information can help you.

    good luck


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