Lots of Questions

farmgirl1971
farmgirl1971 Member Posts: 2
edited November 2015 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with stage 2 ILC in June. My situation is a bit complicated. I have ILC in my right breast with lymph node involvement. I have a 4x3 cm mass very close to my kidneys and aorta. Doctors are not sure if it is breast cancer or not. I hope you don't mind if I tell you my story...I had a complete work up in February of 2015 (complete with 3 D Mammogram etc) and everything looked great. In April I started peeing blood. (never had a UTI or any other health problems prior to this). At around the same time I got shingles. Doctors did a CT Scan to check out kidneys, bladder, etc. The CT Scan showed the breast cancer as well as the mass by my kidneys. I saw an endocrinologist, urologist, medical oncologist and surgeon regarding my situation. I had a breast MRI and Ultrasound. I had clips placed in my breast and under my arm. I was told I had ILC. They told me to get my hair cut short and prepare to lose all my hair as I would soon be starting chemo, then surgery followed by radiation. A week later I was told of a change of plans. I would not be getting chemo as it does not work for this type of cancer. They started me on Femara (hormone therapy) in July. I saw my surgeon in July who told me I could choose lumpectomy or mastectomy. I recently had another ultrasound. I asked that doctor what she would do if she were in my situation. She stated that she wouldn't even give it a second thought...she would have a double masectomy. She sees far too many reoccurances! She told me not to tell my doctors what she said! My oncologist has been seeing me every month for labs, etc. At my last appointment with him I told him I have had a lot of time to think about things...that I am choosing mastectomy and most likely requesting a double. (I was told that ILC is very sneaky; I have very dense breast tissue; I was told that ILC isn't usually found on mammograms; I have an area in question/enhancing tissue). When I told him I was most likely going with a double he said "Well that is the trendy thing to do". I was totally shocked when he said that to me. I said, "Trendy? I don't think so...I have breast cancer"! I just saw my surgeon and she was totally taken aback about his statement to me! She strongly encouraged me to tell him what I think of his comment to me. So this week I am going to tell him...and most likely get another oncologist. In the near future they plan for another MRI to see what is going on. They cannot biopsy the mass by my kidneys as it is too risky. My surgeon said if that is breast cancer they won't be doing any surgery at all. My question is...do you think I could have mets to this area when I only have stage 2 cancer? And also, what do you think about all of what I have told you? Do you think I am doing the right thing? I believe in my heart it is the right thing (having a double and immediate reconstruction using my own tissue). Thank you so much for your time! By the way, I am in the process of getting an appointment at Mayo Clinic for a second opinion...

· Share on FacebookShare on Twitter

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2015

    I think people get a false sense of security getting a double Mx, you can still get BC.

    I had one ILC tumor and my onco said mastectomy on left only was best for me. I have no regret. I didn't have radiation or chemotherapy. My plastic surgeon did a fabulous job both sides match.

    · Share on FacebookShare on Twitter
  • debiann
    debiann Member Posts: 1,200
    edited November 2015

    Yes, ILC is considered "sneaky". I've heard it described as "growing in sheets" so I guess you don't necessarily have a lump which makes it harder to find. MX seems like a good choice to me. "Trendy" probably wasn't the best word for your MO to use, perhaps "conservative" would have been better, but in his defense, I know lots of doctors lacking tact. By trendy I think he just meant that lots of women are making that same decision now, which is perhaps a shift from what he's seen in the past. If it bothers you tell him, but you probably have more important information to discuss. Don't let this one word distract you.

    I have a friend who is a brilliant endocrinologist who happens to also have Asberger's syndrome. While his people skills aren't that good, he more than makes up for it with his medical skills. I'm sure he accidentally offends people on a regular basis, but his patients love him. Everyone can't be good at everything. But a second opinion is a good thing too, go with the MO you feel most comfortable with.

    Yes, also to your question about stages. You can initially be diagnosed stage 2, but later found to have mets. That does not mean that the mass they saw is mets, it could be something else. Praying it is.

    If it is mets, it could change your treatment plan and they may tell you that the mx is unnecessary because the cancer cells have already left the breast, however that's where a second opinion may be helpful because some doctors believe the mx is still helpful.

    · Share on FacebookShare on Twitter
  • Holeinone
    Holeinone Member Posts: 2,478
    edited November 2015

    farm girl,

    If you look at our sig lines ( under our posts ) most ladies that have lobular Breast cancer receive chemo. Ladies that have no lymph involvement or if it is LCIS, usually don't, or a lighter version.

    My lobular had spread to the axillary, it was matted & fused. They call it extranodal extension.

    As far as I know, you do not get staged until you have surgery. If they do chemo first, you might never know excatly how many nodes were cancerous. That is common to do chemo before surgery, especially if the tumor is large.

    If your Cancer has spread ( which is a BIG IF ) you do not have stage 2 cancer. I would push to start chemo or have surgery ASAP......taking the Femara is a good thing, since it's been 5 months since your biopsy.

    My surgeon pushed for a lumpectomy.....I had no idea then that my Cancer was stage 3, and I was in for a long haul. No regrets on having the lumpectomy. Sadly, many ladies have complications with reconstruction. I knew the statistics were the same, either way. Hopefully someone else will come along and explain things with more info

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2015

    Hi Farmgirl,

    I WANTED chemo...and my MO wanted it for me. She wanted to give me every chance to clean up every single cell. So I did it all. As for the MX, I wanted that too...my breasts are very dense and I had 5 "clear-reported" mammos over five years. I found my lump on my own through a self-exam--meaning it wasn't caught by 5 mammos! Surgeon thought it had been there a while.

    I did not trust that mammos/US/or even MRIs would show anything else, so I had the MX with immediate recon (it wasn't bad at all) a year after I finished rads. The post-surgical pathology showed that I had no more involvement in the "bad" breast but had hyperplasia, which can develop into BC, in the "good" breast. So I'm glad I had it all taken out, as much as possible.

    Do I have a false sense of security because I had an MX and all that chemo? No way. I see my MO every 5 months and do self-exams in my skin and underarms every month. I make sure I don't smoke, don't over-drink, eat organic, mostly-plant based foods, take my curcumin and aspirin and Vit D. I get 10-12 hours of moderate exercise a week and keep my weight down--I avoid paraben-based beauty products-- I take my anti-hormonal med every night without fail--all because I DON"T have a false sense of security. I DO, however, feel that I've done and am doing everything I can to help my body fight off any other involvement if it's there.

    Hugs,

    Claire in AZ

    · Share on FacebookShare on Twitter
  • Leslie13
    Leslie13 Member Posts: 202
    edited November 2015
    Farmgirl1971,

    Have you had any other tests like Oncotyping? Do you have a KI-67 proliferation rate? These are additional tests that can help see how aggressive your cancer is.

    I think getting a double mastectomy is the right thing. If the ILC has mestasized to your kidney, you're stage 4 and could have mets in your other breast. The "trendy" comment was likely from all the women following Angela Jolie's choice. I wouldn't take it seriously. You're in a much more complicated place than she is. I'd probably fire the Onco, or at least get a second opinion. And they're taking too long to do something. Looks like they have you on the 6 month Femara trial. Did you consent to that? I didn't but had to wait 6 months for surgery and my surgeon said later that he was one of the researchers for that study. The study looks at how well Femara works for 6 months before more invasive treatment for ILC.

    I was Dx'd in April with stage IIA, placed on Femara and had a BMX 6 weeks ago. Borderline for chemo (4 nodes with micromets) Since there is lots of new info coming out that traditional chemo doesn't work as well for ILC, I'm doing my homework before I decide what to do next. I only had a very small tumor in one breast, but glad I got rid of both. I think I had a better reconstruction for it. I was able to get a nipple sparing straight to implant procedure. I highly recommend it if you qualify. I've had much less pain, and have feeling in one breast. You need to stay your size or go smaller for it to work.

    And frankly, I'm exhausted from surgeries and losing my father a month ago. So is my family. So waiting a little, while I get a second opinion is OK for me.
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2015

    Because I had + nodes, oncotyping wasn't an option for me. We went for the "whole hog" treatment, and I welcomed it. If this crap gets me later, I want to be able to look back and tell myself I did everything that was offered to me to save myself. I would have regretted not taking all the tx offered.

    · Share on FacebookShare on Twitter

Categories