Large Lobular Cancer

LobularDoc
LobularDoc Member Posts: 1
edited May 2016 in ILC (Invasive Lobular Carcinoma)

Hi Ladies


I'm having a really tough day. I'm a breast surgeon who got diagnosed with breast cancer so I know far too much. I'm a complex case. My mamma was normal. An USS showed 2.5cm cancer, and the biopsy showed both ductal and lobular cancer. An MRI showed 6cm tumour, with a normal axilla.


I was given chemo before surgery, and the post-chemo MRI showed a complete response! ER +ve, Her 2 -ve.


Then I had a mastectomy, and although there was no ductal cancer left, I had residual 13cm (!!!!) of lobular cancer, with 2 positive nodes. I'm currently waiting for the results of my axillary node clearance, and am terrified about the future. I've never seen a patient with a tumour as large as mine, and it has obviously been growing during the 6 months of chemo, as I wasn't menopausal after it.

Not sure how I'm going to get though the next few days

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Comments

  • ntchick
    ntchick Member Posts: 2
    edited January 2016

    Hi Lobular Doc,

    Mm sounds like a really rough day, sorry to hear about your bad news it would freak me out too. This lobular cancer is quite in its own field it acts so differently to the others. I too had the two types of cancer lobular and ductal. I found a small lump thought to be fatty tissue and scar in my first ultrasound (lobular hard to detect) the start of last year. 5 month's later I found large lump under it . Turned out to be 4.1 cm. Thank god they cut it out when they did with lumpectomy disguised as a boob lift (thanks to my large boobs and the position of the tumor) and axillary node clearnce 1/31. I went through 2 surgeries and infection and now am half way through chemo, all going well. I have been harassing my sister to get a mammogram and found out yesterday my sister has breast cancer too we are only in our 40s. Good luck with your results and your journey. At least it's out of your body now.

    Nt chick

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  • 123JustMe
    123JustMe Member Posts: 385
    edited May 2016

    Bump

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    LD, sorry to learn of your diagnosis. It is extremely nerve wracking to wait on results. Please try to stay as busy as possible while waiting. If you are not currently working due to having had surgery, find some fun and interesting things to do whether it is binge watching something on Netflix or retail therapy or taking a day trip to somewhere pleasant that you've wanted to see but never had time for. Try to do something totally different and new and that you think you would like doing. Get your head in a different place and try to keep it off the obvious.

    Also, consider antianxiety meds, at least to help you get through a good nights rest. I have no clue what that Is like being a breast surgeon, but even tho you've seen a lot, your own particular case is unique and no one can say how exactly it will unfold. Try not to catastrophize things when you are still learning what you are dealing with.For now, do your best to accept that you have some uncertainty to deal with and take it a day at a time. Best wishes to you.

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  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited January 2016

    LobularDoc,

    I am so sorry about your diagnosis. I was also diagnosed with ductal, lobular and DCIS in both breasts - a veritable cancer soup, at the age of 40. Although I am not a breast surgeon, my mom was first diagnosed with Stage I in 1992, then another Stage I primary in 1996 (in the other breast), and then with Stage IV in 2000 (yes that's over 15 years ago, and she is still living her life). I have been researching (on my own) every aspect of breast cancer since 1992 (my mom's initial diagnosis). When I was diagnosed in 2012, I also thought that I knew way too much, and sometimes not knowing would have actually helped me psychologically. But one thing about knowing too much is that we can make our decisions very quickly with whatever circumstances are presented to us and draw on our knowledge.

    Also, MrsM is completely right; there is nothing you can do about the past and it does not help you to catastrophize your situation. My mom was told she had two years to live in the year 2000, and she has been continuing to live her life with Stage IV cancer for the past 15 years. So, even when you think it is bad, your individual circumstances may turn out to be much different from your expectations. After all, we are all individuals and not statistics. All we can do is to put one foot in front of the other, and live our lives on a day-to-day carpe diem basis. (By the way, I still struggle myself, and have to learn to take my own advice :))

    Best wishes to you. . .

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  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2016

    The hormone therapy might have worked better on your ILC but I guess they use chemo first then hormone.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited January 2016

    Lobulardoc....


    I had an 8cm tumor.....had both ductal and lobular.....nothing was seen on mammogram or sonogram.

    I did not get clean margins and it was in at least 17 of my nodes.....cancer bursting out of the nodes....plus LVI.

    I will be 12 years out this May.

    I did chemo/radiation/ooph... I was 46.....I have been on Femara ever since.

    Hang in there......it will get better with time on your side.

    Jacqueline

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  • mary625
    mary625 Member Posts: 1,056
    edited January 2016
    Hi Lobular Doc. I had 10 positive lymph nodes after neoadjuvant chemo. My tumor was 7-10 cm at the start of chemo. I'm still here today--that was 2011/2012--and I plan to be here a lot longer! As you know from your profession and now through personal experience, lobular just doesn't show up well on anything but the MRI. Same thing for me. I take Femara, and I think it's really working. Please concentrate on the fact that your tumor has been removed and probably did not spread before surgery since your axilla looks clear on the MRI. I hope you get confirming results of that soon. You said that the chemo did not put you into menopause. I've never heard anyone mention that as a barometer of how the chemo is working. I think what does or does not send one into menopause is how close you are already and the age of your ovaries. I hope you can take shots or have an ooph so you can take Femara or another AI. The evidence is building that those are the best choices for lobular. Hugs to you!
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  • sgreenarch
    sgreenarch Member Posts: 528
    edited January 2016

    Dear Lobulardoc. Just want to help calm you down as I remember how those early days felt. I sometimes wondered if the worrying would kill me before the cancer; it is very hard...I'm with those who recommend anti-anxiety meds. Helped me. I'm not a dr but my husband is. A surgeon who does mostly breast surgery so I vicariously knew too much, too. Mine was multifocal, discovered in a routine mammogram at age 49.

    But some of the phrases that I held onto came from my surgeon and mammographer. First, they said not to be so frightened by size. That lobular is measured differently and that size isn't the most significant thing. That it teds to be slow growing. That is responds well to Femara. I was on Tamoxifen for 2.5 years, then had oopherectomy, then switched to Femara. I also had IV Zometa for the first three years, twice a year. Just passed the five year mark, thank God. You are now in the most difficult stage. Hang in. There are many of us here who are ok and doing well.

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  • Lucca06
    Lucca06 Member Posts: 69
    edited January 2016

    It is so hard to get your head around and very scary but it does get easier. I was in a very similar position. No tumour showed on mammogram, diagnosed via ultasound. Thought it was a few centimetres and a single node affected. I had neo-adjuvant chemo, then mastectomy. At the follow up I was told the cancerous area had been 12cm of ductal and lobular (grows like a spiders web) and that 9 of 18 nodes still showed a trace of cancer. I was distraught and truly thought that was it but I am here very nearly at 5 years from diagnosis and bar a few scars the happiest and healthiest I have been for a very, long time. Lobular reacts very differently and the hormone therapy is generally thought to be more effective in treating it than chemo so you have that extra protection. I adopted the approach of just trying to focus on each day as if I thought about the long term it was terrifying, but after time that got easier and easier.

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  • HawaiiMom
    HawaiiMom Member Posts: 113
    edited January 2016

    hi everyone,

    Another place I don't want to be in! I have been in the November Chemo group and the lumpectomy lounge, and just recently looking for advice/opinions on my largish ILC when I happened upon this group that is just starting.

    Lobulardoc, I just had a similar experience to yours: a lucky call by a radiologist detecting what they thought might be two foci, one 15mm the other 9mm. Same outcome with ultrasound and mri. But my BS told me not to put my money on size since ILC is "sneaky". Boy she was right. The 15mm turned out to be 6cm! I did a double take. She told me that it had been growing for years yet no lymph node involvement. I take a lot of comfort in that. Wishing for good results with your node clearance.

    I know it's large, lobulardoc, and you of all people know what can happen, but this is THE chance in your career to be able to say you lived through what your patients are going through, and that it's difficult though not impossible, and it's made you a better doctor for it. The ladies who have chimed in are living proof. You can do it!

    I am now done with 4 of 6 chemo infusions, heading to radiation after that. Chemo has been ok so far. I have a mammo in two weeks and have the option of having mastectomy then. So my big question in the lumpectomy lounge was...shall I just take out the rest of the breast(s) and forego future problems, or keep them and take my chances with a lucky radiologist? The girls have mostly been telling me to go with the mx but ask an ILC group. I change my mind almost daily.

    Warm hugs to all!


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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2016

    Hi Loblulardoc - What an insidious disease this is. I'm so sorry you're facing this. Wishing you good news with the axillary nodes. On bad days I had a mantra that I repeated to myself over and over - keep on keeping on. Gentle hug.
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  • grandma3X
    grandma3X Member Posts: 759
    edited January 2016

    Lobulardoc - I admit that I was not totally surprised to find out that the 2 small spots of ILC detected by MRI were really just the edges of a large (5cm) tumor. My SNB came back negative, though, so I'm off to see the RO and MO about the next step in this journey. I take some comfort in the fact that the tumor is strongly ER and PR positive.

    BTW a new paper just came out showing that high PR % is a good predictor of low recurrence score on Oncotype dx for lobular patients.
    http://dx.doi.org/10.1016/j.clbc.2015.08.001
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  • Nik1966
    Nik1966 Member Posts: 431
    edited January 2016

    Lobulardoc. I just wanted to chime in here, and let you know that your not alone with a huge ILC. I had a 13cm with 9/12 lymph nodes. Mamma graphically occult, ultrasound looked like my nodes were unaffected, and they said that it was only 8cm. I was floored with the size, they say that it was in my left breast for years. I had surgery before chemo and am now on exemestane and Zoldadex..

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  • Annette_U
    Annette_U Member Posts: 111
    edited February 2016

    LobularDoc, Hang in there. MRI said mine was all gone too after Neo but there was 4.3x3x1.5 left at surgery with 4 larger then normal nodes with no evidence of cancer. I'm still here NED 3 years later. I opted for all the treatment they were willing to give at the time and had a hysterectomy due to side effects of Tmxfn. Now I am on Femera and doing well - with the every 30 min hot flash of course. You will get past this worry.

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  • DenvMom
    DenvMom Member Posts: 27
    edited May 2016

    Doc,

    I had Invasive Lobular 2CM on left breast and my doc found insitu ductal next to it.  Had both breasts removed.  Now, 11 months later I am starting Arimidex  I had pneumonia then a sick son and then a tooth implant so that is why I am starting 11 months late.  My Oncotype came back so low that I did not need to do Chemo or Radiation but that is no guarantee cancer will not be back so that is why I am willing to do Arimidex which I understand is no fun.

    I know you will worry as we all do but do what your oncologist tells you to do as my 93 year old mother (a 5 year BC survivor) says, "Do your best and then you don't have anything to feel guilty about."     So do your best and stop worrying it will get you no where.  Seven years ago I watched my husband die of pancreatic cancer in less than 5 months and now I enjoy every day and am happy because every day is precious.  We are alive today, tomorrow is not promised to anyone so do your best and be happy! 

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