ILC Reoccurance Question Help

Marilyn-77
Marilyn-77 Member Posts: 5
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was diagnoised with invasive ILC in May 2008 with micro metatasis. Because of unclear margins and some clustered calsifications my BS recommended a Mastectomy with restorative surgery. I had the surgery on August 18. To make a long story short the restorative failed. I now have a new lump (same breast) away from the scar near the sterium and another near the scar under the arm. I was intially placed on Fermeria but couldn't handle the nausia. I was them placed on Tamoxifen. I had no rads or chemo. Anyone heard of reoccurence. I have an appointment with my BS Tuesday and I am scared the cancer is back especially with the recent post about the effectiveness of Tamoxifen.  Thanks

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    Marilyn, are you post or pre menapausal?  They usually the AI (like femara) for post mena and the tamoxifen for pre or peri menapausal.  Marsha

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  • Marilyn-77
    Marilyn-77 Member Posts: 5
    edited January 2009

    I had a TAH in 2001. So I was post menapusal. Could both of these lumps just be scar tissue?

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    Well sure it could be Marilyn!  And until someone tells you differently that is ALL it is.  Do get it checked out though.

    I always thought post menapausal went on an AI not tamoxifen but hopefully someone like Nash will come on and comment more.  She is really up on all this more than I.  I was recently switched from tamoxifen to femara but that was because of mets, the tamoxifen obviously wasn't working for me.

    Hang in there honey, sometimes the ILC thread is a little slow since we are only 20% of the BC population.  Maybe someone in the hormone thread could tell you more.  Hugs, Marsha

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  • Marilyn-77
    Marilyn-77 Member Posts: 5
    edited January 2009

    Thanks I'll ck that tread as well, I have a gut feeling that the Tamoxifen is not what I need. Sorry that you have mets. Where did it mets to if you don't mind if I asked. Did you have a PET scan done?

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  • nash
    nash Member Posts: 2,600
    edited January 2009

    Hello, girls. Marsha, I will give you an extra hug while I'm here--I hope your leg is feeling OK today.

    RE: Tamox vs AI when post-meno. There is no harm in going on Tamoxifen if you're post-meno. It's just that many studies have come out over the past few years showing AIs to be more effective than Tamoxifen. So if the Femara was intolerable, I can understand swtiching, but I think it would make more sense to switch to Arimidex, which is the prefered first line AI for many oncs anyhow. Another option would be to take Tamoxifen for a couple of years, then switch to an AI called Aromasin. Studies have shown doing that is more effective than staying on the Tamoxifen for the whole five years. Don't know if women can go straight on Aromasin, or if it has to follow a course of Tamoxifen. I was reading the drug manufacturer's website, and it was unclear on that distinction.

    Anyhow, I would discuss all this with your onc, of course. I'm sure the girls on the Hormone Therapy board will have some good input as well.

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited January 2009

    Marilyn, how did your recon fail? If you had infection or other issues that caused you to have your reconstructed breasts removed, then it quite possibly could be scar tissue left over from that. I know I have a ton of weird lumps around my reconstructed breasts.

    This latest SABC had two studies that showed that Femara is superior to Tamoxifen in preventing recurrences. I am pre-menopausal, but my onc wanted me on the Femara because of the increased level of protection. So I get Lupron shots to put me in Meno.

    You can read about the results of the studies right here on the home page and click the link to research news.

    I take my Femara at night, right before bed. I don't get any side effects except that it helps me sleep.

    I hope everything turns out ok.

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited January 2009

    Here is the link to the study

    http://www.breastcancer.org/treatment/hormonal/new_research/20050224.jsp

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2009

    I opted no reconstruction.

    I found a lump about 1/2 inch from the scar about 8 months or so after.....they biopsied it and it was just a fat globual.

    I hope you are fine.

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  • Marilyn-77
    Marilyn-77 Member Posts: 5
    edited January 2009

    Thank you for responding to my post.

    The reconstruction failed because the first expander was too large for me. After 120 sterile dsg (2x/day) changes and no infection. The PS decided to put a smaller expander in. He did cultures to be sure and I was afebrile. He put in the smaller expamder and closed the wound and 2 weeks later I had Staph. He had told me not to take any more antibotics. So he had to remove it. He couldn't explain to me why he failed to cover me with antibotics. Anyway he had to remove it and leave me with nothing. I have since had a new PS consult and he is planning to do a lassitius dorsi flap reconstruction. I just hate the thought of 2 operative areas. I am postponding it for now because I have insurance but being out of work for yet another procedure can be finacally difficult. I have had 4 surgeries since August.

    As for the Switch from Femera to Tamoxifen. I was deathly ill with Femera even with Zofran. I still get sick with Tamoxifen but I can control it with Zofran. Occassionally I try not to take the Zofran but so far I have had to start taking it again.

    I would be willin to try another more effective RX are the SE as bad as Femera?

    Thanks again and for letting me ramble.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited January 2009

    My onc says that AI's provide about a 3% benefit over tamox.  He does prefer AI's for post menopausal women, but he does Rx tamox as well.  I really struggled with side effects on Arimidex (8 months) then only 4 weeks on Femara (no better) so onc put me on tamox. For me it was worse - the GI problems were harder for me to deal with than the joint pain etc. I gave it a 2 month try and was ready to bag it all, but onc didn't want me to... So we went to Aromasin after being given a wonderful 2 or 3 week break - forget which it was.  I have now been on Aromasin for 18 months.  I still struggle with side effects, but overall I think it has been kinder to me than Arimidex.

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited January 2009

    Karen,

    This is what the latest BIG-98 study concluded:

    The researchers found significant differences in disease-free survival and recurrence between the women who took Femara compared to the women who took tamoxifen. ("Significant" means the differences were probably not due just to chance.) Compared to the women who took tamoxifen, the women who took Femara:

    • were 2.6% more likely to have disease-free survival;
    • had a 19% lower risk of the cancer coming back in the same breast; and
    • had a 27% lower risk of the cancer coming back in another place in the body.

    The researchers noted that Femara benefited women who had had chemotherapy as well as women who had not.

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  • mkl48
    mkl48 Member Posts: 350
    edited January 2009

    Wh the discrepancy between "disease coming back" and disease free survival?? How does one reconcile that? Beth

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