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ILC & No Chemo?

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mamam
mamam Member Posts: 9

Trying to find others that did not do chemo and have ILC. I am coming up on my one year since dx and just changed over to Arimidex. What treatment are others receiving?

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  • jojo9999
    jojo9999 Member Posts: 52
    edited August 2015
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    I did not have chemo due to low Onco score (4) even though I had one + node. Am on Tamox until I go through meno and then will switch to femara (I am 52 y.o.) Can you tell me why you had your ovaries removed? to use AI instead of Tamox? can I ask how old you are? I just had a followup with my MO and he wants to keep me on Tamox until meno.

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited August 2015
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    Another ILC'r here. Lumpectomy. No chemo. My oncotype score wasn't as low as jojo's but low enough that the risk would outweigh any benefit. I'm on tamoxifen. Have thought about ovarian suppression/AI but for now I'm going to live with the devil I know. I'm 47. Diagnosed at age 44

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited August 2015
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    I had no chemo due to low Onco score. I'm on Tamox and lupron following BMx. Also MO waited for BRCA neg result. If I had returned positive for the gene(s) I would have had a full hysterectomy.

    Scottie

  • Dusty2
    Dusty2 Member Posts: 1
    edited August 2015
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    Hi MamaM.....Hope you're doing well......I also had ILC in my left breast....a very very small area....0.21 cm, and had 1 out of 7 sentinel nodes affected.....0.9 cm. Onco test was tried twice on me but because the tumor was so small,a result, (number) could not be determined. I had a lumpectomy followed by 33 rounds of radiation. Was put on Arimidex and stayed on it for 17 months. That's when trouble set in.....This tiny tumor had metastisized to my ribs, spine, and pelvis. I am now on Capadetadine, or Xeloda which are chemo pills.....Hormone pills did not bring my tumor markers down. This chemo pill is bringing them down. My original oncologist did NOT do any bloodwork on me in the 1 1/2 years I was with him......but my new one immediately checked my blood for breast cancer tumor markers and found them......I was taken off Arimdex and put on Tamoxifen which worked for only about 3 months, then put on Faslodex...shots in the butt!! but again they didn't affect my tumor markers.....So, here I am on Xeloda which is helping me. My markers went down to 1,100 from 4,800.......so results are posititive so far. I see the Oncologist every 4 weeks and have my blood drawn to check the status of the tumor markers. I'm getting infusions of Zometa to strenghten my bones.....My 12th infusion will be in Sept. They've helped me immensely.....

    I too am mystified about your having your ovaries removed.....but each case is different. I'm 66. Many factors go into deciding what the best treatment plan is best for each person's circumstances.

    I wish you well MamaM. Write again.....We need each other.....We're in a "special group" of sisters.....

    Do take care.....Dusty2

  • fizzdon52
    fizzdon52 Member Posts: 382
    edited August 2015
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    Hi there, I am in New Zealand and I wasn't offered Chemo, we don't do onco testing in New Zealand either. From what I can gather they only give chemo in NZ if there is nodal involvement. They said it doesn't work as well for ILC and would do more harm than good?

  • MrsDarcy
    MrsDarcy Member Posts: 50
    edited August 2015
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    Hi. ILC here too - 3.5 cm mass. ER/PR+ zero node involvement. My onco was 22 but I too was told the risk outweighed the benefit if I opted for chemo. So I had 20 radiation trreatments and tamoxifen for 5 or 10 years

    :0)

  • 614
    614 Member Posts: 398
    edited August 2015
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    Hi All:

    I had a double lumpectomy followed by radiation.  I had higher dose radiation for less weeks (4) rather than lower dose radiation for more (6) weeks but I was given the same amount of radiation.  This followed the "Canadian Study".  I took Zoladex for 3 months to suppress my ovaries because I was not in menopause and then I had my ovaries removed because I did not want to continue taking an extra medicine.  I did this because I could not metabolize tamoxifen (according to a blood test) so I am taking AI's.  I am taking Arimidex/Anastrazole.  I did not do chemo because my oncotype was 14 and I was told that chemo does not work as well for ILC.  I was diagnosed with pleomorphic ILC, pleomorphic LCIS, and Invasive Tubular Carcinoma.  The ITC is not a big deal.  The PILC and PLCIS is a big concern.  I just celebrated my 1 year anniversary (I was diagnosed at the end of June 2014) and so far, I am fine.  However, I had 2 suspicious areas on an MRI.  One was biopsied and benign but resulted in a giant hematoma which has not gone away yet from May 2015.  The other suspicious area is a 1.5cm linear non-mass enhancement with rapid washin washout kinetics, Bi-Rads 4b, that could not be biopsied.  I am on a 6 month wait and watch plan.  I will find out more information in November 2015 at my next diagnostic mammogram, sonogram, and MRI. 

    Dear Dusty,  I am so sorry for all that you are enduring.  I am sending you positive vibes.  Your story is unbelievable.  Good luck.  Why would an oncologist not do blood work????

    I wish you all the best.

  • MrsDarcy
    MrsDarcy Member Posts: 50
    edited August 2015
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    614 - My oncologist doesn't do bloodwork either - at least not on me. I have had my family doctor request blood tests, thus how I found out I am anemic. I see my onco in September so I am probably going to raise the issue again. 2nd year mammo and US is in 2 weeks.


  • 614
    614 Member Posts: 398
    edited August 2015
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    Good luck in 2 weeks. 

  • mamam
    mamam Member Posts: 9
    edited August 2015
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    I tried Lupron first and did ok with it & my oncologist wanted me to have ovaries removed so I could take an Al. My oncotype was a 6 & Ki67 was 5%. I was told by 3 oncologists no chemo & that hormonals were best for lobular.

  • vlnrph
    vlnrph Member Posts: 493
    edited August 2015
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    Micromets in the sentinel node bought me both a complete axillary dissection plus chemo. If those nasty cells had not escaped the original tumor(s), I think endocrine/hormonal therapy would have been the plan

  • meow13
    meow13 Member Posts: 1,363
    edited August 2015
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    My oncodx score of 34 suggested chemo benefit but I didn't do it. I had one ilc and one idc. Taking exemestane.

  • 614
    614 Member Posts: 398
    edited August 2015
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    No matter what decision anyone makes, it seems that the hormonal drugs work well. Good luck to everyone.

  • awb
    awb Member Posts: 213
    edited August 2015
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    614---my mom had ILC many years ago, stage 2 with negative nodes. She had lumpectomy, ALND, radiation, and 5 years of tamoxifen. survivor of nearly 29 years now with no recurrences! (however, has had colon cancer twice since, but is still going strong at 86 years old!)

    anne

  • fizzdon52
    fizzdon52 Member Posts: 382
    edited August 2015
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    awb thanks for that positive post - I love hearing stories like that.

  • kdell63
    kdell63 Member Posts: 3
    edited August 2015
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    Hi,

    I had ILC in multiple places on my right beast - 6 tumors, all under 1 cm. There was LCIS on my left. I had a BMX in June and started Tamoxifen 3 weeks ago. My Oncotype DX was 7. What a summer it has been!

    Kath

  • mira845
    mira845 Member Posts: 23
    edited August 2015
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    i had an oncotype score of 10. My MO wasn't originally even going to do an oncotype test because of my node involvement but I insisted. She is now recommending lupron and an AI since I'm 51 and not in menopause yet. She says it AI's are more effective with ILC than tamoxifin.

  • treelilac
    treelilac Member Posts: 138
    edited August 2015
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    I also started Lupron and Aromasin (I'm 47). I took Tamoxifen for my 1st diagnosis and couldn't tolerate due to what my second MO called "central nervous system SE."

    Side story: I was initially told to have TN for my 2nd diagnosis. A port was put in during my MX. The pathology report after MX stated I had no residual cancer left and the initial biopsy must have got it all, despite that my MRI showed a 3 cm mass. The second opinion hospital found my cancer on the MX specimen; it was about 1 cm but ER/PR positive. Go figure.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2015
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    Is Lupron something new? I'll ask my mo if that would be good for me.

    Never mind I read it for premenopause.

  • kdell63
    kdell63 Member Posts: 3
    edited August 2015
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    My gynecologist was very negative about Lupron. Can I get some feedback please?

    Thanks!

    Kath

  • 614
    614 Member Posts: 398
    edited August 2015
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    Dear Anne:

    Congratulations to your mom.  What an inspiration.

    Dear Kdell:

    Good luck and keep fighting.  Sorry about your summer.  I think that Lupron is like Zoladex - it suppresses the ovaries so that one can take an aromatase inhibitor if one is not in menopause.  I took zoladex for 3 months and then had an oophorectomy because I did not want to take an extra medicine.  I wanted the Arimidex to be the only one.  I did not have any trouble with the Zoladex but I only took it for a short time.  Good luck with the Lupron. 

    If you have to suppress your ovaries and be medically induced into menopause as I had to do so that I could take the aromatase inhibitor, I would highly recommend having an oophorectomy.  It is an easy surgery (if it is done laparoscopically) and there are no longer any worries about ovarian cancer. 

    Good luck.

  • Optimist52
    Optimist52 Member Posts: 144
    edited August 2015
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    I'm also from New Zealand and my oncologist did suggest the Oncotype DX test. It cost us $5000 (and private insurance doesn't pay for it). My score was 22 (low intermediate) and she said it wasn't worth doing chemotherapy. I am taking Letrozole now which sounds as though it works well with ILC. My pathology report said there were areas of pleomorphic features. This has scared me and my oncologist was rather negative about it. My surgeon was more optimistic so I think I will listen to her!

  • treelilac
    treelilac Member Posts: 138
    edited August 2015
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    Kdell63: Since Lupron's function is to suppress ovaries like 614 said, you'd expect all the menopause issues. I've just started a month ago so I don't have anything particularly bad yet although I'm certain its effect has already kicked in. When my hospital arranged me to get the shot, they initially told me they would give me an equivalent (the chemical name is triptorelin). You can Google it up and find apparently there are an assortment of similar drugs that the pharmacist can substitute. When I actually got there, the nurse said it was out of stock, so I still got Lupron (brand name) anyway. I asked my MO what's the difference between triptorelin and Lupron. She said they functioned the same way but Lupron was much more expensive. She said in fact the hospital used to forbid the doctors to prescribe Lupon but use substitutes. I imagine the equivalents would still behave slightly differently in terms of SE. I guess that means there is leeway to pick one that works best for you (after discussing with a doctor/pharmacist).

  • Leslie13
    Leslie13 Member Posts: 30
    edited September 2015
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    My Oncotype is 15 so no chemo, just Femara. It's been over 5 months and surgery is only 3 weeks away. Last imaging study was 2 months ago so I'm very curious as to whether this has been the best approach.

    Living with cancer for months without surgery's been very hard.
  • treelilac
    treelilac Member Posts: 138
    edited September 2015
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    Leslie13: So your doctors choose the neoadjuvant (chemo or hormone) approach. I'm just curious: did they tell you why you can't do surgery first? I was projected to be stage IIA first based on imaging but updated to IA after surgery. Hang in there! You're almost there.

  • hlya
    hlya Member Posts: 29
    edited September 2015
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    Dx 6 years ago, 1.1cm, no nodes. was on Zoladex injection for 3.5yrs, Tam for 5 years.

  • Keys-Plez
    Keys-Plez Member Posts: 190
    edited September 2015
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    I had ILC, lumpectomy, radiation and soon to start AIs. No chemo. MO did not run oncotype. SND but no cancer in nodes.

  • meow13
    meow13 Member Posts: 1,363
    edited September 2015
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    After 4 years NED I do wonder if choosing no chemo was best for me. My doctors recommended chemo but I felt I would receive damage I was unwilling to endure. I feel pretty good but hormone therapy is not without side effects. I hear many of my BCO sisters feel they would blame themselves if they didn't do chemo and the cancer metatisized. Wish we could make treatment decisions without risk our overall health.

  • OxfordLady1
    OxfordLady1 Member Posts: 6
    edited October 2015
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    Just finished 15 radiation treatments....no chemo as Onco score was low/med at 21 and did not show any real benefit. I was thrilled not to have the chemo because at my age (68) it can really cause havoc....it's been six months since my diagnosis and I'm meeting with my oncologist in a few weeks as I'm curious now as to what the follow-up will be....

    Having the mastectomy was actually the easiest part for me - I'm not planning on reconstruction and amazingly don't really miss my left boobie much - it's so hard to predict how one would feel - and right now I feel reasonably optimistic going forward....

    Sending best wishes to you all - XOXO

  • England59
    England59 Member Posts: 2
    edited November 2015
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    Hi

    I'm from England - I didn't have chemo either, but had a left mastectomy and immediate DIEP reconstruction and 15 rounds of radiation after - no lymph nodes were involved. My ILC was multifocal which I believe it quite often can be - 2 masses were found 1.3 + 0.8 cm

    Am now on letrozole for the next 10 years