Bifocal tumors? Anyone else?

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Calsacienne
Calsacienne Member Posts: 14
edited June 2014 in IDC (Invasive Ductal Carcinoma)


I had a lumpectomy two weeks ago and they took out two, one 18mm and the other 10mm (1cm, if you prefer), which were 3cm apart.


Not much information out there about this! They only found the second one from the MRI, which was done only a few days pre-op. There aren't enough MRI machines where I live. The first was found only on the sonogram. My mammogram was clear!


How do they form? My margins and lymph nodes were clear (yeah!) If it's one tumor that split in two, how is it that I have clear margins on both?


No talk of a mastectomy. Was told it won't improve my chances. I'm about to turn 50 and live in France. Here are my stats:


IDC, Stage 1A, 15%, ER & PR positive, HER2 negative

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  • Mausie
    Mausie Member Posts: 49
    edited November 2013


    Hello Calsacienne!


    I understand your frustration, especially since we both live in Europe where they simply do not do mastectomies very often. I had a 2.5 cm ER-/PR- but HER2+++ tumor, in 2006. I had surgery, chemo, radiation, and a year of Herceptin. That tumor was in two parts, much like the one you describe. There was one larger tumor, with a separate "extension". The surgeon removed both in a lumpectomy, and they had the same pathology. That tumor seemingly has not returned.


    In September my yearly mammogram was noted to have "some changes", but no tumor identified; I was told to get an ultrasound which revealed a new cancer. Biopsy and surgery revealed a completely different tumor, clear margins, but this new one was ER and PR positive, with HER2 negative - a completely different tumor, 1 cm at the largest dimension, but there were no investigative studies done, for instance to look for lymph node involvement. A presumption was made that there is no lymph node involvement.


    The surgeon ordered an MRI but it did not show any other tumors. I was given another lumpectomy (this is in the same breast by the way), and put on Tamoxifen, which I am taking daily.


    The frustrating thing is that on this breastcancer.org site, which I believe is mainly geared to Americans, it seems standard to get a complete mastectomy if you have a second tumor and if you have already had radiation. Do you feel that you are getting adequate treatment here in Europe?


    Wishing you well!


    Mausie

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  • corky60
    corky60 Member Posts: 726
    edited November 2013


    Bonjour! The standard here is radiation after lumpectomy. So if you get a lumpectomy you get radiation treatment. But radiation treatment can only be done once. If another tumor appears a lumpectomy isn't performed because radiation can't be given again. So in that case a mastectomy is done.


    I recently read that decades ago the French were way ahead of Americans in the use of lumpectomy. Lumpectomy in certain cases was gradually adopted in America but here lumpectomy goes hand in hand with radiation. I suppose the patient could refuse it. But I don't know if a breast surgeon would perform a second lumpectomy on a breast that's already had radiation treatment. I don't think it's standard. The doctors get together in a group "tumor board" and discuss the treatment plans for their patients.


    You raise some interesting points. Thanks for posting.

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  • Calsacienne
    Calsacienne Member Posts: 14
    edited December 2013


    I can put this question to the doctor but I too, heard that once radiation is done, it's finished.


    Mastectomies are still done in France but the only cases I know of were very extreme. A friend with an 8cm tumor at 70% is getting one after chemo in Paris. It's shrunk to half size, thankfully.


    Another factor was that mine had strong hormone receptors, so he's confident that Tamoxifen will keep any reoccurrences at bay.


    I have to admit that I've been really pleased with my care here. I've been followed for BC for almost 30 years, about 13 here in France with this same radiologist. My only "beef" is that things are not very organized. There's a lot of "Call your gynecologist" and then "We don't have them. Go back to the surgeon" or "They'll do that at the Cancer Center" but "No, they should have already..."

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  • corky60
    corky60 Member Posts: 726
    edited December 2013


    Calsacienne, you first had BC thirty years ago? Thirty years is exceptional! That makes you an amazing long-term survivor. Here Tamoxifen isn't usually used for post-menopausal women with BC, but of course there are exceptions. There are some ladies on the website who have taken Tamoxifen and then switched to an aromatase inhibitor such as Aromasin. And the mother of a friend has been on Tamoxifen for at least twenty years.


    Although you recently had a lumpectomy, is there anything special that you've done in order to keep BC away for so long? Any special foods, exercise, supplements, meditation or prayer?

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  • Calsacienne
    Calsacienne Member Posts: 14
    edited December 2013


    No, being "followed" is totally different than having BC. Big difference.


    I found my first lump and mammo at age 20. Because there was a young BC death in the family (cousin I never knew) and I have dense breasts that form a lot of cysts (both higher risk factors), I've been checked periodically for 30 years. There was no BRCA testing back then so just the fact that I'm Ashkenazi Jewish also put me in that category. So I've been playing hide-and-go-seek with this menace for a long time.


    Yes, Tamoxifen is for those of us who haven't gone through menopause yet, as far as I understood.

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  • emmacat
    emmacat Member Posts: 17
    edited December 2013


    Hi,


    I'm an American living in Europe. I am trying to decide whether to:


    1. Cancel my U.S. insurance


    2. Obtain International insurance which includes treatment in the U.S. or


    3. Obtain International insurance which excludes U.S. coverage


    I haven't been diagnosed or anything, but I am high risk (mother had invasive bc at age 47). After watching my mother die from this disease, I would want a mastectomy if anything was ever discovered, no matter how small. Are you saying it's difficult to get a mastectomy in Europe? What if you have private international insurance (for example Allianz, Bupa Int)? Let me know your thoughts.

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  • Calsacienne
    Calsacienne Member Posts: 14
    edited December 2013


    First of all, it depends on how long and why you're in Europe before deciding. I originally came to France as an expat and I had U.S. insurance which worked great here in France. I had all three babies on U.S. insurance. My husband is French. But, long story, I won't bore you with, I couldn't return to my old job and then had to make the switch. So now I'm on French insurance so I can't comment. I wouldn't recommend canceling your U.S. insurance though, if you like it and if it works because you're covered when you go to the U.S. You can also choose to be treated there, if you want, an option I no longer have.


    Don't "decide" anything in advance. You have no idea what kind of cancer, if you even do get it. I'm sorry about your mom, but please don't decide ahead of time or anticipate anything. A decision made in panic could be a decision you end up regretting. It all depends on what kind of cancer, how far it's advanced and a few other details. You will make the best decision for YOU at the time, with the advice of your medical team, if you ever have to face that.


    Mastectomies are done here in France. I know someone who had it with the same surgeon. She had a much more advanced and aggressive cancer than I did. The same surgeon told me outright, my long-term survival would NOT be better with a mastectomy. It would have been inappropriate in my case. I also had a pretty medium grade, ordinary cancer that usually responds well to a number of treatments.


    Health care costs are much lower here in Europe (or really, anywhere outside of the U.S.) so mine was happy to pay anything submitted. Some procedures are different here and I simply included a letter to explain (i.e. vaccines have to be bought at a pharmacy and then taken to the dr. so there are separate receipts). I also ran into some hesitation with pre-natal testing, since here the age is 38 but my insurance covered from age 35 (I was 37 at the time). So I had to insist, assuring them that it would be paid for. We also had to do some out-of-pocket up front payments but again, much cheaper than in the U.S. I had to really know what my company would and wouldn't pay for ahead of time.

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  • JaneB1
    JaneB1 Member Posts: 47
    edited December 2013


    Emmacat,


    I am American and was living in Europe when I noticed nipple discharge. I had insurance where I was living but did not want to be treated far from relatives and home. I got on a plane and flew to the US. I was treated at a comprehensive cancer center in the US. I was on COBRA and was so happy I had it. I had to have a mastectomy due to DCIS being in three out of four quadrants. So I assume I would have had a mastectomy in Europe too. However, my European friends have told me I never would have gotten a prophylactic mastectomy of the good breast in Europe. And, due to dense breasts and triple negative and an aggressive cancer that arose and became invasive between annual mammograms, I really wanted a BMX. It was no problem to get it in the US.


    So I would absolutely keep US coverage if at all possible. Feel free to PM me if you would like further details on why. And I would line up long term US coverage now. After treatment, when my COBRA was running out, I tried to get international insurance from one of the big providers of expat insurance. Even though I had a BMX and an excellent prognosis, I was basically told "Not a chance". And US coverage under Obamacare is problematic for expats because, as I understand it, you have to be a resident of a state in the US to buy it and an expat isn't a resident of any state. I'm no expert on this but that is what I was finding out. Fortunately, I am back in the US with insurance from my employer with my new job. But there are quite a few issues for American expats to consider.

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  • emmacat
    emmacat Member Posts: 17
    edited December 2013


    Hi Calsacienne,


    I really appreciate your input. I am in a bit of a panic right now with this insurance change in the U.S. The only reason I've been paying my Kaiser premium in the U.S. while living in Europe is because of my fear of getting breast cancer, as irrational as that might seem. It was only $140/month. But now I don't think we will qualify as non-residents, and the cost of our premiums as individual subscribers is doubling.


    I would just like to have options open to me, just in case. My husband is American and all our family is in the U.S. and we travel back there twice a year. We are hoping to move back at some point in the near future.


    Jane, I sent you a PM!

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  • jbokland
    jbokland Member Posts: 890
    edited December 2013

    I am an American living in Australia.  Thank goodness for my international health plan through Aetna.  I can seek care in US or AU. !

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  • Calsacienne
    Calsacienne Member Posts: 14
    edited December 2013

    That's great but you're probably an expat. When I was an expat, I too was able to get treatment anywhere I wanted on BlueCross/BlueShield of Illinois. 

    But once I stopped working, I had to go on a French plan, which was fine since I wouldn't leave my kids to get treatment in the States anyway. 

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  • emmacat
    emmacat Member Posts: 17
    edited January 2014

    I was able to secure an individual plan through Cigna Global which covers me anywhere, including the U.S.  To make it affordable, though, I had to get a $5k deductible.  We have to pay out of pocket, and it's not cheap, but gives me a lot of peace of mind!  I'm going to air 5 months before I get the breast MRI on my new plan.

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  • Mausie
    Mausie Member Posts: 49
    edited January 2014

    Hi Corky, 

    I was wondering about your statement that postmenopausal women are not usually treated with tamoxifen in the US. What made you think this, and where can I read about that, do you know?  I would appreciate any information you can give me about this, since I am postmenopausal and on tamoxifen, and live in Switzerland. I know you said there were exceptions, but I think in Europe, it is standard for ER+ tumors, no matter if you are pre-menopausal or post menopausal. I also was told I was given tamoxifen because  it does not cause bone thinning as the Aromasin does, and I have serious osteoporosis. 

    Thanks Corky - just trying to find out as much as possible about this dread disease. 

    Mausie 

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