Triple Positive ILC anyone?

ccjj
ccjj Member Posts: 128
edited February 2017 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with triple positive ILC. The biopsy showed triple positive.  The 2nd opinion I received stated it is so unlikely that ILC is triple postive that I should have this confirmed after surgery to make sure I get treated properly.  Surgery supposedly confirmed the triple positive.  So now its chemo, herceptin, and tamoxafin.  Anyone else have this? It seems odd to me to not only have the rarer ILC but to also be triple positive. Anyone else have similar diagnosis and if so what type of treatment did you receive?  I am starting dose dense AC x 4, followed by dd Taxol x 4 along with herceptin for a year and then the tamaxofin.  Radiation is still being discussed. Surgeon says no. Have not meet with radiation oncologist yet. Plan to get a 2nd opinion on this.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2011

    ccjj, do you know if your Her2 was positively determined by FISH?  Were both your biopsy and surgical pathology reports done at the same facility?  Is it a major, NCI-designated cancer center?

    I have no idea how rare Her2+ ILC actually is, but I know that it's not totally uncommon to get the Her2 factor incorrect.  There have been articles written about this, although it usually tends to go the other way -- missing Her2+ bc that's borderline, so women not getting Herceptin when they truly need it.  But if your pathology wasn't done at a major institution, and if you still have any nagging doubts, you can always have your slides sent to one for a second opinion, or get an oncology appt. at one to discuss your concerns and let them decide if all testing has been as thorough as possible.

    Good luck!   Deanna 

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  • toomuch
    toomuch Member Posts: 901
    edited September 2011

    ccjj - There are other triple positive ILC women who post on this forum. I'm sure that they will be along to support you soon. I hope that you find the chemo "doable" and are without signficant side effects!

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  • Steff66
    Steff66 Member Posts: 33
    edited September 2011

    I am not triple positive, but my ILC was really fast growing, with a ki67 of 40% which is aggressive, just as many Her2pos cancer. I an doing 4 FEc 60 and am now on weelly taxol, 12 weeks. I have asked for second opinion on tumor, just to make sure if its lobular at all. This might affect whether I try to get some AI instead of tamox, which I read can be less effective with lobular. I find chemo really doable physically, but feel low and anxious about effectiveness. Good luck with you treatment!

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited September 2011

    ccjj - I was triple positive. I had TCH x 6 followed by rads. I had herceptin for a year. I am now on Arimidex as I was post menopausal. There are a few of us triple positive girls on here but you won't find many. We represent about 0.1% of bc patients. My oncologist was very optimistic as there are targeted therapies such as herceptin and taxomxifen etc. these days which make the outcome much better.

    If you have anymore questions feel free to PM me or ask on this thread. I am away on holiday at the moment but will be home within a week so will be able to monitor this thread more closely.

    Sue 

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  • roseamy
    roseamy Member Posts: 29
    edited September 2011

    Hi,

     I too am triple positive ilc(predominantly) although I also have idc in the tumour, the treatment I recieved was neo adj chemo 6x TCH, then mastectomy, one month of chest wall rads then a further 18x herceptin 1 year of tamoxifen, bilateral ooph then onto arimidex.

    I am well and have been ned for 2 1/2 years.

    Rose

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited September 2011

    ccjj - I can remember posting the same question when I was first diagnosed and didn't get many, if any responses.

    Sue

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  • KimbytheSea
    KimbytheSea Member Posts: 84
    edited November 2012

    I am so glad to find somebody else with a Triple Positive ILC diagnosis. I just found out TODAY, after three months, that my combo is actually very rare.

    Where can we get more info?

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  • powermom
    powermom Member Posts: 195
    edited November 2012

    Kim, don't know if you noticed, but the posts on this thread are from 2011.  I was disappointed that this is not a very active forum.  I misspelled the user before; suzieQ60 is triple+ ILC.

    Now that I know we are indeed rare, I will ask my MO more questions about what is different about our treatments, if anything.  One thing I have read is that lobular is likely to appear in the other breast, and that is difficult to detect, i.e., sneaky.  I have not done exhaustive research on this, but have read this.  I will be glad to hear whatever additional information we can gather.

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  • herstrong
    herstrong Member Posts: 69
    edited December 2012

    Thats me!

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  • HensonChi
    HensonChi Member Posts: 357
    edited December 2012

    I am triple positive ILC with one node.  I am almost 5 years out and am still on arimidex.  I did TCH and then the year of herceptin.  Feeling fine these days!

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  • herstrong
    herstrong Member Posts: 69
    edited January 2013

    I asked my MO about being her2+ plus ILC. He said that er/pr + is inversely related to her2+. what makes one er/pr+ also makes one her2- and vice versa. He said only 8% of breast cancers are triple positive.  With ILC representing 15% of invasive cancer and triple positive representing 8% of breast cancer, that makes the combination equal 1% of invasive cancers (15% X 8% = 1%). 

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  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited January 2013

    Hmm - I was just surfing and found this.  As you can see...I am ILC TP.  Did TCH x 6 may thru june of '11, since then and still Herceptin every 3 wks, Aromisin (AL) nightly, Xgeva every 6 weeks for bone mets.  Have been NED since Sept '11.  I had no idea this form is rare.  But I kno triple positive is not.  There is another thread dedicated just to Triple positive.  Can't remember what heading but if you search for TonLee you will find it.  By the way...because of mets, did not have BMX (bi-lat mastectomy) nor radiation.  My onco intends to keep me on Herceptin for 3 years. 

    Prayers and Positive Healing Energy to everyone,

    Sue

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited January 2013

    Sue - what great news. I hate that lobular is so sneaky and often quite large when it's found. There aren't many ILC members on Tonlee's thread - I'm there occasionally.

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  • herstrong
    herstrong Member Posts: 69
    edited January 2013

    When I was breastfeeding my first baby, I noticed that my nipple didn't stand out as well and she had a tough time latching on. Now I wonder if I had ILC way back then. Now my baby is 24.

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  • Soccrmom13
    Soccrmom13 Member Posts: 13
    edited January 2013

    Just diagnosed with triple positive ILC on 1/9/13. Doing as much data gathering as I can prior to genetic appointment next week. Was sent for MRI last week and just received news the other breast is clear, trying to get copy of report to see if the tumor is still as small as the Mammo and US  showed.  Very happy about the other breast being clear as I have read ILC can hide. I also have a history of blood clots and have Factor V.

    I am learning this process is a lot of ups and downs and a lot of waiting. I do love my BS and they seem to be moving very fast at getting me into appointments.

    For those of you with ILC and triple positive did you end up having chemo. For some reason this is my biggest fear.

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  • herstrong
    herstrong Member Posts: 69
    edited January 2013

    My US and MRI showed that my tumor was 1 cm but when they did the lumpectomy, they discovered that it was 7 cm. Since there were no clean margins, I had a bmx. But first, I had chemo, then the bmx, then rads because the tumor was so large. I don't mean to make you worry as my case is probably more severe than the vast majority of TP ILC. But back in the early diagnosis stage when we thought the tumor was small, I was told I had to have chemo and Herceptin because I was TP. And just to let you know, having chemo is not the end of the world. The not knowing what chemo is like was much more difficult than it actually was. I took two Vicodin on an empty stomach the other day and felt ten times worse than I ever did on chemo. But I'm not going to lie to you, but I've really struggled with the hair loss, particularly since my hair was so long.

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  • Soccrmom13
    Soccrmom13 Member Posts: 13
    edited January 2013

    @Herstrong thank you for the info on TP and ILC. Also I appreciate the reassurance about chemo. Sending hugs your way.

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  • ccjj
    ccjj Member Posts: 128
    edited January 2013

    Soccrmom13, sorry you have to go through this. Unfortunately it's my understanding that being HER2 + pretty much means chemo unless your ILC is incredibly small. Being HER2+ Treatment protocol is Herceptin. Herceptin has the most data being used in combination with chemo and then continuing on for the rest of the year every 3 weeks after chemo is over. Most Oncs won't deviate from the chemo. I was completely freaked out about doing chemo. As Herstrong states chemo itself was not so bad. The hair, eyebrow, eyelash loss though I did find pretty traumatic. I finished chemo in Jan 2012 and finished my Herceptin in Dec 2012 and it still upsets me when I think back to being without hair for so long. Being at my kids functions, work events, a family wedding, and feeling so self conscience. Happy to be healthy now and it really is amazing how the time has past so quickly. It won't feel like its going quickly while your going through it, but you will get through it and all of a sudden it's a year later. Good luck to you!

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  • Soccrmom13
    Soccrmom13 Member Posts: 13
    edited January 2013

    @CCJJ thank you for your response. Met with the genetics counselor last week and am not going to be tested for the BRCA gene so just waiting to get a surgery date. Looking like it will be a lumpectomy. I am guessing I will meet with MO and RO after the surgery to figure out a path forward. I appreciate the info on Chemo. It sounds not as bad as I have in my mind.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited January 2013

    Soccrmom - I finished chemo in Mar 2010 and herceptin in Dec 10 - I now have lovely long thick hair. The chemo part is only 18 weeks and you will find the herceptin part easy. It's a short time in your life and you will soon recover. My ILC tumour was only 11mm, clear nodes but I felt it was important to go with my oncologists recommendations - you can't take the chance with HER2.

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    How goes it soccrmom? I too am TP and ILC, Had ACTH and am very close to wrapping up the Herceptin. Took part in the Aphinity trial so I may also be getting perjeta too. Lucky you to score a lumpectomy....

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    Thanks for posting HensonChi. I like to hear about people that are doing well....

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  • Martie1228
    Martie1228 Member Posts: 73
    edited August 2013

    There sure aren't many of us, are there!?!? I just had BMX 07/22 and started AC (dose-dense) 08/14. TP, ILC 7 cm, DCIS .5 cm, extensive LCIS. Positive margin at chest wall, but unable to radiate as received it with first BC 16 years ago (DCIS and tubular). Also Nx because of lymph node dissection at that time. Am thankful that there is this thread so I have peeps that have gone/are going through the same things. :). What was the Aphinity trial?

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    Aphinity trial is a phase 3 double blind study for Her 2+ gals. We are definitely getting herceptin( standard treatment) and may be getting perjeta also. Study will determine whether the perjeta in addition to Herceptin improves rates of survival. It's a 13 year study. and it's still recruiting! Sorry to hear your story....I am almost at the end of my ACTH journey...Am feeling better every day and get my last dose of Herceptin in October!!.

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    Not many of us at all!! Does anyone know what we should or should not be eating/ drinking?

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  • kartay
    kartay Member Posts: 3
    edited January 2017

    yeh found someone who has the same diagnoses. Yes it is rare. I had the same treatment. I have had 4 x chemo with hercepton, hercepton for a year. I have not started trimoxifin yet but will be for approx 10 years. I had a double misteptomy. Lobular can jump from one side to the next so opted to not worry and have my breast removed and get implants. I am currently pumped to size with the expanders so will have surgery about April for implants. I hope you don't have to have radiation. I was stage two and had on each lumph node removed and all clear.

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  • KMH
    KMH Member Posts: 1
    edited February 2017

    Yes I was diagnosed with confirmed triple positive invasive lobular carcinoma on September 2013. Had lumpectomy with no chemo no radiation and was intolerant of tamoxifen and arimidex. Now it has returned in same area as before and questionable in the other breast . Will set a goal for double mastectomy in the near future. Hopefully I will have negative lymph nodes this time as well. I appreciate the opinions and conversations of all the strong and brave people who have posted on this site . Thank you

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2017

    Dear KMH,

    Welcome to the community. We are so glad that you reached out here and that you have felt supported by others' stories. Please stay connected here and keep us posted on how things go. We will be looking to see you around the boards The Mods


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