Pleomorphic ILC

cckim-I did not have a BRCA mutation but I was diagnosed with PILC last July. I had my tubes and ovaries out in December after I finished AC/Taxol. I was in chemopause at the  time and have had almost no side effects. I haven't regretted my decision for a minute. Have you seen a gyn oncologist? I got opinions from 2 gyn oncs when making my decision and meeting with them really helped.

Hi, I am Pleomorphic ILC but HER2+ which I understand is unusual for this.  I was also unusual in that I was Stage IV at first diagnosis with mets to liver and bones, but I am doing very well so far.  I understand that my particular combination of pathology does very well with Herceptin and so far I am finding that to be true.  Right now my liver is clean and has been for over a year, and my bones are "managed".  I am lucky that I have responded so well and hope I will continue to do so for a long time.

I can't find anyone else on the Stage IV forum with this pathology, so I hope you don't mind me posting here!

Suzanne, I am glad to hear you are doing well on Herceptin and glad you posted.  I pray for your continued success with this particular drug.  Do you also take Tamoxifen or an aromatase inhibitor such as Arimidex?

cckim-I am taking Arimidex and so far no bad side effects from it. I opted not to take Tamoxifen because I didn't want to worry about the uterine effect. My onc was comfortable with me taking either. What are you going to do?

cckim-I had extracapsular extension too. One of my path reports indicated pleomorphic ILC the 2nd just referred to it as Grade II. Did anyone mention pleomorphic to you?

My RO knew the preliminary results from the study that was just presented at ASCO last summer and yes, I did have radiation. I had 3 field radiation: breast, axillary and supraclavicular nodes. And I had anterior and posterior beams to the axillary nodes to fully cover the area where the extracapsular extension occurred. I have LE in my breast and mild LE in my chest and arm but I haven't regretted the radiation.

I would strongly encourage you to ask your BS or RO for a referral to a lymphedema therapist now. There is some thought that early intervention with LE exercises and manual lymphatic drainage can help to keep LE mild. It's also good to have baseline measurements so that even mild LE can be diagnosed early. Ofcourse, many women have radiation and don't develop LE but being proactive can only help!  After chemo the radiation seemed easy. Although the daily trips did drag my spirits down a bit. I started the Arimidex a few days after I finished radiation. My RO said that I could start it during rads but my MO preferred that I wait.

When do you have your simulation?

Good luck with those!  it's brain scan time for me too.  Fun, fun, fun!  Glad you are being checked out so thoroughly and I hope you get nothing but clean results.

I have been diagnosed with Pleomorphic Lobular cancer. I was told last week that  they were not sure the chemo & radiation will help. And if the cancer comes back there is nothing they can do for me and that I would have a short life expectancy. My tumor was a 2.5 cm and est/pro positive and HER2 neg.  So not sure  what to think or feel. My first chemo treatment made me really sick and was hospitalized and they were considering stopping but instead  will reduce my next dose to see if I can tolerate it on 6/29. I have never felt so empty inside. Sherry

Hi Sherry,

I don't have too much to add to what Gitane said so well about the process and feelings of going through bc, but want to extend a cyber  hello and support. It seems that there isn't too much agreement about the course of pleomorphic ILC, but a lot of our oncs are a lot more positive about prognosis than your doc. My onc said that er+ and no nodes were more important than the pleomorphic aspect, and here I am at almost 3 years. Whatever our docs say carries so much weight, no wonder you are feeling so down. Also, the chemo wreaks havoc with your body, mind, and emotions. I had a MAJOR depression during treatment. I think it was as bad as the cancer. Please talk with your doctor if you're showing any signs of worsening depression.

Hope you had a good day,

Catherine 

I'm 42. I'm PILC Stage 2A, triple positive and BRCA2 positive. Nobody has mentioned any concerns about the ability of surgery and chemo to return me to health in a semi-permanent sort of way. I also have rheumatoid arthritis.

I was diagnosed in 12/2010; I had a bilateral mastectomy in 1/2011. I started chemo in 2/2011; I finished 4 rounds of AC and I'm halfway through 12 weeks of Taxol and Herceptin. I'll continue Herceptin, have a salipingnoophorectmy (my new favorite word--ovaries and uterus) later this Fall and probably go on an aromitase inhibitor. I've been blessed in that chemo had not hit me very hard at all. The hair's gone, but that's about it. Nausea was successfully managed with dextramethasone and Kytril pre-chemo and phenergan post-chemo.

I've maintained my mental state by working, finishing up my MBA, and staying active in my church.I trust my doctors and I follow their instructions (um, mostly) given my own condition. I am looking forward to getting back to my regularly scheduled life (my husband and I are planning our 20th anniversary trip to Ireland), my newly reconstructed truly *EPIC* boob job (I look great!), and menopause (I've been praying for it since I was 13). I pray, I do a lot of deep breathing, I meditate, and I give thanks.

My mom who passed from ovarian cancer in August last year was taking antidepressants during her treatment and I thought it was a "Heck yeah!" idea. You do what you gotta to get through this. Make sure your doc knows--mine told me "The only side effect we can't fix is the one we don't know about."

You're in my prayers, Sherry.

toomuch - hello.  I had my simulation done last week on the 16th.  I will actually begin radiation on Monday the 27th.  I have seen an LE therapist and have received a sleeve and exercises.  I do worry about pneumonitis.  Have you experienced this?  I am also concerned about my implant as I had immediate reconstruction following BLM.  Are you aware of anyone that received or is receiving radiation with implants?  I will have intermammary radiation in addition to supraclavicular and whole breast radiation.  Oh and yes my pathology report did indicate PILC.

susieq58.  Thanks for your info.  I guess I will be waiting until after radiation to start hormonal therapy.  I understand the reasoning is to be able to determine which treatment is causing side effects occuring, if any.

Sherry56 - I truly hope you receive encouragement from this site as I have.  There are quite a few of us with PILC.  Like others I have been told that the pleomorphic designation is not as important as the er/pr receptor status plus the node status.  I am a clinical pharmacist in a University setting and I spoke to the oncology pharmacists who confirmed the pleomorphic status is not a signifcant factor in prognosis.  I pray that you will tolerate your next chemo treatment.  I had trouble with a normal dose of Taxol and so we lowered the dose by 25% and I did fine.  I also want you to know that like you I have many days of feeling empty, lonely and scared but that is normal and we will get through this. Gitane is absolutely correct in saying no one can tell you what your prognosis is.  Hugs and prayers, Christina

cckim-I do not know anyone who had radiation with implants in place. I do know women who have had radiation with the expanders in place though. I had considered having a mastectomy with expander placement before my radiation and my RO told me that she had some women do fine after radiation with implants. She felt that upper extremity exercise to increase blood flow to the area during radiation was important in preventing complications. She suggested that I swim or kick box. I wore my sleeve to my radiation treatments and exercised daily throughout treatment. I did not develop limited range of motion in my arm so I think that the exercise helped.

I hope that the radiation is easy for you. Moisturize a lot. It definitely helps prevent skin breakdown!

Hello everyone, I have been reading for a while and decided to 'jump in here'.  Last year in October 2010 I was diagnosed with PILC Multifocal Stage 3 Grade 3. I am ER+/PR+ and HER2+ - I didnt realise how 'unusal' this was, until now.  I have completed Chemo - TCH - 6 sessions - three weekly - and 25 sessions of radiation.  My burn is recovering nicely   I had a mastectomy in November and no reconstruction. Was advised against it until after radiation.    I am on Herceptin until about Xmas time but have refused to take Femara.  I live alone, (have friends and family) but I need to be able to work to survive and I want some quality of life now.  The side effects of this drug are too bad for me to even contemplate,  so I have been to see a cancer nutritionist/dietition and hopefully I can keep it at bay this way.  My Cancer markers are 'clear' whatever that means.  My Oncologist is not too 'forthcoming' with information - its like pulling teeth and I am a private patient !!  It seems to me that they dont want you to ask questions, just do as you are told.  Had enough of that when  I was married !!  Anyone else out there not taking the oestrogen blockers ? It was hard to make this choice, but I think its the right thing for me to do.  My oncologist did tell me that he has had others say 'no' and they are still alive, albeit for only a few years so far.

Chrissy.

Hi Sue, I live in Hervey Bay (QLD) and I have just turned 56 - Wooohooo ! Well, anyway, at least I'm still alive.  I think my receptors were 100/80 but not sure about that, my doctors are very vague and just dont like questions.  I am seeing the breast surgeon on 21 July at Greenslopes Hospital and I want some more answers.  I dont like being 'patted' on the head and told to 'just get on with my life'

chrissy

PS yes been through menopause started at 41 finished about 50 - hysterectomy at 45 - but still have my ovaries.  They dont want to take them out, say they are not 'working' anyway.

Do you have any side effects from the Arimidex ? My main concern with Femara is Osteoporosis and loosing my hair - again - and these side effects can be PERMANENT.  There are heaps of other side effects.

 Originally my oncologist was a Dr Albert Gan - in Western Australia.  I went to WA and stayed with my sister as I live alone and there is no private hospital offering oncology in Hervey Bay.  He was okay but really hated me asking questions.  When I finished Chemo (five months later) I flew back to Brisbane and then onto Hervey Bay.  Two weeks later I was back in Brisbane (May just gone) for my radiation at Wesley. Premion Cancer Care.  This was okay, although I did get a rather nasty burn, but its healing okay.

Dr Keith Horwood took over my oncology at Greenslopes (my original diagnosis, breast surgeon and surgery where performed there in October last year) for the last couple of months.  Now I have decided to stop all the travel and just let myself be 'at home' whatever that means.  Not sure where home is anymore.  Tomorrow I will be having Herceptin number 10 or 11 (not sure) at the Hervey Bay Hospital.  I will be a public patient for the first time through this whole thing.  Hopefully this goes okay.  I will be seeing another oncologist (visiting) by the name of Doctor Alison Hadley.  I hope she is nice and I can talk to her.  Maybe she will finally answer all my questions.

Chrissy

Sherry56;  Get a new Oncologist!!!!  I can't believe he/she said that to you. Sorry you were so sick after chemo.  Ask your onc for additional pre meds and take your anti-nausea drugs as soon as your get home from treatment.  Dream of Wellness!!!!  Heather