Any other Canadian ILC ladies out there

Options
Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Canadians Affected by Breast Cancer

Hi

I have just recently been diagnosed with invasive lobular carcinoma (pleomorphic lobular carcinoma in particular) and wondered how many other Canadian ILC ladies there are out there?  I would be very interested to hear your story, where you are from, treatment etc.

Thanks Cathy

· Share on FacebookShare on Twitter

Comments

  • hrf
    hrf Member Posts: 3,225
    edited December 2009

    I had ILC, diagnosed last February. Had surgery, chemo, rads and now Arimidex.

    · Share on FacebookShare on Twitter
  • YoYo44
    YoYo44 Member Posts: 203
    edited December 2009

    Hi Cathy,

    There are a few of us on the Montreal thread too.  I am in the Montreal area how about you?

    I was diagnosed July 17, had a consult with a surgeon and oncologist July 23 and was in chemo  and drug induced menopause starting July 29.  Quite the whirlwind.  I had 14 weeks of taxol then a BMX Nov 17 with lymph node removal and TE pacement.  My tumour was quite large and came out of no where-found it myself (only 44 with no history so no mamo).  I had thick breast tissue and unfortunately some of it on one side was actually BC.  Then suddenly it formed a lump.  I had one breast removed due to the tumour and the other was prophylactic-not doing this again!!  Hoping to get the pathology results tomorrow to find out if it was actually prophylactic (scans all look good) and lymph node involvement.

    I expect to have AC chemo after x-mas some time and hoping no rads but we shall see.  I have had great care and the chemo went OK.  Recovery from surgery was not bad either but my nerves are driving me a little crazy.

    I find the hardest thing about all of this is feeling sub-par for so long and not knowing when it will end.  I am hoping to get more answers after the path report so maybe I will then know when the end will be.

    This whole BC thing is very doable.  Great care is available so prognosis is much better now.  The hardest part is the mental game.  I have worked until the surgery to keep busy and have had amazing support from friends family and work.

    Good luck and stay strong!

    Yo

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Thank you for sharing your story Yo. 

     It sure sounds like things happened very quickly for you at the beginning.  Can I ask why so long after you were diagnosed before you had BMX?  You had your surgery Nov 17 and you are just getting your pathology tomorrow?  Wow, that is a long time.  I thought waiting the 2 weeks for results was bad enough.

    I am from Thunder Bay, but have been referred to Toronto.  So needless to say I have been doing my fair share of traveling since September and it looks like I will have quite a few more trips to make yet.  I agree with you it doesn't seem like this is ever going to end! It does seem like they have come along way with breast cancer, but I am also learning they still have a long way to go.  I wish they new more about this pleomorphic lobular carcinoma.

    Thanks again for sharing

    Cathy

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Yo I forgot to ask did you do the oncotype?

    Cathy

    · Share on FacebookShare on Twitter
  • panther
    panther Member Posts: 7
    edited January 2010

    Diagnosed in January 07. Lympectomy, sentinel node, Rads, Arimidex  3yrs in april 10. Thumbs up, I am doing good. Do not want to think about my follow-ups. (Jan& Mar)

    Panther

    · Share on FacebookShare on Twitter
  • marie111
    marie111 Member Posts: 119
    edited January 2010

    Hello canadian ILC ladies:

    I was dx in may2009 with ILC and LCIS. I have since had a lumpectomy with clear margins and no nodes and chemo.  I am now yrying to decide on MX single or douvble or any at all. How many of you had a Mx and what made you make that decision ?

    Marie

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Hi Marie

    I am scheduled Jan 12 for bilateral, even though the PILC, PLCIS and LCIS have all been found only on the right side.  The BS thinks that a unilateral would have been fine, but they have already picked up on something on the other breast that requires follow up in March.  I have been doing this already since last February and just cannot imagine starting all over again this March.  It is a very difficult decision and I do sometimes 2nd guess myself and probably will right up until next Tuesday.  Best of luck with your decision.

    Cathy

    · Share on FacebookShare on Twitter
  • jackieC1964
    jackieC1964 Member Posts: 15
    edited January 2010

    Hi Cathy

    I'm from Surrey, BC.  I just had surgery for ILC and LCIS on Christmas Eve. I was pretty depressed over that surgery date but at least I was able to be discharged Christmas Day.

    I had a MRM on my right side, with a tissue expander.  I'm still recovering and dealing with this drainage tube.  I'm really hating that thing!!  I also had 12 lymph nodes removed, which may be causing some of the pain in my arm. I'll be seeing my plastic surgeon tomorrow, so I'll see what's up.

    I don't yet know what treatment I'll need.  I will have to talk to the cancer agency first.  My pathology report just came back yesterday, and the doctor says it sounds very good, so I'm feeling good about that.  I've just had too much bad news lately.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Hi jackieC1964

    Sorry this has happened to you and that you have to be here.  There are alot of wonderful women here who can be very helpful and truly understand how crappy this is.  That is awful that you had to have your surgery on Christmas Eve. How did you come to find out you had ILC? 

    I hope your appointment goes well with the plastic surgeon tomorrow.  Do you know when you will be seeing the oncologist yet?  Hopefully you won't have to do anything else.  I will be thinking and praying for you for that.

    I will be having bilateral on Tuesday and have found myself too often these last few days talking about how this terrible disease, does not take Christmas holidays, yet most of the people we are dealing with do.

    Cathy

    · Share on FacebookShare on Twitter
  • jackieC1964
    jackieC1964 Member Posts: 15
    edited January 2010

    Hi Cathy

    I was diagnosed thru a screening mammogram.  It showed up as calcifications and then the US showed a vague mass.  They used ultrasound to do a core biopsy which came back as ILC with some LCIS as well.  Then I had an MRI and it looked like a large tumor of about 5 x 3 centimetres, so the dr. wanted me to take the first surgery date, which happened to be Dec. 24th.

    I haven't seen the pathology report from the surgery, but my doctor told me over the phone that it looks good.  It seems like much of the tumor was LCIS, so it wasn't as bad as she had originally thought. She also removed 12 lymph nodes, but they seem to be negative. There was something wrong with them however, as they were enlarged. She did give me a name for the condition, but I don't remember what.  I guess I will have to see the report.

    I've been told I will have to wait a few weeks to see the oncologist at the cancer agency.  A friend told me she had to wait 2 months following her surgery before the cancer agency contacted her.  So until I hear from them I won't know what my treatment will be. I wonder if this is the same in every province, or just in BC. The waiting is hard, especially since everyone I talk to keeps asking me what my treatment will be.  I have had to repeat myself so many times I'm sick of it.

    As for the doctors taking holidays, I was surprised that mine actually didn't.  She did two surgeries on Christmas eve, and my plastic surgeon did as well.  They both seem to be extremely busy.  Maybe we have a doctor shortage here in BC.

    I hope your surgery goes well.   Are you having the tissue expanders or reconstruction done as well? You have probably heard what to expect - what I'm finding is the drainage tube is one of the worst things about it.  Hopefully I'll be done with that soon. Good luck and let us know how it goes.

    Jackie

    · Share on FacebookShare on Twitter
  • YoYo44
    YoYo44 Member Posts: 203
    edited January 2010

    Hi Cathy,

    Sorry for getting back so slowly.  School is back in today (although I had some appts) so I have more time, and energy,  for the internet now.  Wow, so many responses here!

    I finally got the path report back Dec 17 as promised.  Not sure why it was so slow.  I had 6/8 nodes pos.  Argh!  So rads for me, in addition to more chemo.  It looks like it will be FEC starting Jan 14, but I will hear for sure on Jan 14!  I just want to get started again so i can be done.

    Cathy, good luck with your surgery.  I was diagnosed July 17 and started chemo July 29.  I did 14 weeks of Taxol and started on Zoladex injections (anti hormonal-puts you into menopuase)  at the same time.  BTW, 7 weeks now, after the BMX I am doing pretty well.  I don't have any pain, the tightness from the TE is much better (I get fill #2 next week) and I can move my arm pretty well.  The nerve pain has settled down too and that is a big relief.  I am starting to feel pretty normal now from the surgery and the chemo.  (who would have thought it was possible!)  I am able to sleep on my back or my side so that is great too.  I really wondered if I would ever feel better.  I had the cursed 4 drains in for 3 weeks and they were really driving me nuts.  Getting them out was wonderful as I could shower properly finally.  It wasn't really all that bad but I was a little more sore the next couple of days.  Overall I was happy with the decision for the BMX and it was not as painful or as bad as I imagined.  Good luck with your surgery next week!

    I did not do the Oncotype.  My onc thought I would not qualify for the TailorX trial (he was right) and I did not want to pay the $3000.  I dod think it is a worthwhile test though.  Wish they would license it here.

    Jackie, I hope you are doing well and got some good news with your path report.  I am glad you were out at least on Christmas day.  I can tell you my underarm was very sore from the lymph node removal but it has gotten a lot better now.  It can still be sore if I hold my arm close but it has improved a lot.  Keep the faith!  There are a lot of great people here who share their support and experiences and it makes it easier to get through this.  It's like someone is walking with you shining a flashlight so you can see the path and what is ahead.  I try to accept and digest the news I get as quickly as possible and keep telling myself 'if all these other women can do this, so can I".  This is helpful for me and somewhat comforting.  You will also see the full spectrum of experiences.  Some people have every SE in the book and others have minimal ones.  BTW, I used to live in Burnaby.  I miss the west coast although my son thoroughly enjoys the winter here.  Good luck with the PS tomorrow!

    Hrf, thanks for your FEC comments last fall. Was just reviewing that info to get a grip for the next round.

    Take care ladies!

    Yo

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Hi Jackie

    You situation sounds kind of similiar to mine. An area of greater than 5cm showed up on MRI  and was rated BIRAD 5.  Initially they did core biopsy on it and it came back PLCIS, which needs to be treated like DCIS, and be removed with clean margins.  When she did the excisional, there were two areas of PILC within the PLCIS, plus she didn't get clean margins, so hence needs to go back for more. I am happy for you that your initial pathology looks good and only LCIS and not more invasive.  Hopeful the node part of it will be ok also. How frustrating to have to wait so long to now see an oncologist and for your friend to have to wait 2 months.  That is crazy.  I am not doing immediate reconstruction for two reasons.  It was seeming impossible to coordinate 2 doctors and I would likely have had to wait months.  I didn't think I could afford to do that, especially since the MRI picked this up back in July.  Way too much time has already passed. The other reason being that if I do have to have radiation and/or chemo, it was recommended to delay reconstruction. I hope you don't have to put up with the drains much longer.

    Yo It sounds like you are recovering well from not only chemo but also mastectomy.  That must have been very upsetting to find out that the nodes were positive and told you have to do the chemo again.  I am so sorry.  These threads have been a life saver for me.  One of the most common complaints I seem to read about are the drains.  So I went out today and purchased one of these special post mastectomy camisoles, not cheap $55.00, but I thought if these drains are such a pain, anything that might help, I am willing to try it.  Good luck with your appointment on the 14th. Please keep us posted.

    · Share on FacebookShare on Twitter
  • Kathy044
    Kathy044 Member Posts: 433
    edited January 2010

    Editing this to add correct name, sorry---Hi Jackie, I live across the river in Coquitlam and so I'm being treated at the Surrey Cancer Centre (FVCC). Small world. I was out there today for bloodwork and a meeting with my onc in preparation for my second chemo session tomorrow. It might seem long waiting for an appointment with an oncologist but looking back I can't believe how fast things seem to be flowing. PM me if you have any specific questions.

     My cancer was found through a routine screening mammogram in Sept. and at a  followup ultrasound a few days later I was told it was 'probably' cancer', an enlarged lymph node was also noted at the same time. I went out and bought a copy of Susan Love's Breast Book the next day and found it very helpful.

    I had an ultrasound guided core biopsy of the tumour and fine wire biopsy of the node on Oct 8 and received the pathology results at the BS appnt.Oct 15. It was ILC, the node contained cancer tumour also, and I was scheduled for a lumpectomy with axillary node dissection Oct 27th. 

    I received the surgery pathology report at my BS appnt. Nov 6th and was referred to the Surrey Cancer Center at that time. I was told it could take six to eight weeks to hear back from them, but it was sooner than that and I had my first appointment with the Oncologist to discuss treatment (Chemo as it happened) Dec 10,  had a bone scan and MUGA and a second appnt Dec 16 for the results (at which time I confirmed I was willing to do chemo, I wasn't sure at first) My first chemo session was on Dec 18th.Time is flying!

    · Share on FacebookShare on Twitter
  • YoYo44
    YoYo44 Member Posts: 203
    edited January 2010

    Hi Cathy (Formykids),

    How are you doing.  I know you are getting close to the surgery date.  I hope you are hanging in OK.  I know it was stressful leading up to the surgery.  The camisole will probabaly be reaslly good.  I did not get one as I though the darned drains would be out in less than a week...  Bu I did find using a fanny pack to hold them was really good.  I also used large safety pins sometimes to pin then to various things (ie. hospital gown).  I saw a lot of ladies saying satin pyjamas would be good for sliding into bed-but I actually found the velcro effect of flannel better since if I found a comfortable spot I wanted to stay in it!  The recovery is not bad.  By the end of the day I found I was very tired and after a couple of weeks the nerve pain kicked in, mostly in my arm with the lymph nodes but on the chest too.  That was irritating and tiring.  But that is what painkillers are for!

    Take care and have a good weekend!

    Yo

    · Share on FacebookShare on Twitter
  • jackieC1964
    jackieC1964 Member Posts: 15
    edited January 2010

    Hi Ladies,

    I had the drain removed yesterday, and while there is some relief (and it's great being able to finally shower) the area is still really sore.  The area above where the drain tube was is hard and very tender to the touch.  And since the drain was still draining about 50 ml a day there is a chance the fluid may build up and I'll need to have that removed.

    The plastic surgeon also filled up the tissue expander with 60 ml, so that is causing some extra pressure and pain. Right now I'm looking pretty lopsided as the fake boob is much higher than the real one, and it's hard as a rock.

    Cathy, the nurses did suggest getting a special camisole from the mastectomy store, but I didn't bother.  I just pinned the end to a tank top and then stuffed the end into my sweat pants.  The hospital pamplet suggested wearing two pairs of underwear and stuffing the drainage bulb between the pairs.  Either way it's still a pain, especially because the area around the tube became very sore.  Hopefully you will have better luck with yours.

    Jackie

    · Share on FacebookShare on Twitter
  • hlya
    hlya Member Posts: 484
    edited January 2010

    Happy New Year ladies!

    Count me in.  I got ILC and also joined the Tailox clinical trial.  Anybody needs to know more about it you could msg me. 

    · Share on FacebookShare on Twitter
  • hlya
    hlya Member Posts: 484
    edited January 2010

    jackieC1964  and Kathy044:  I am in BC as well. I was dx earlier than both of you, so if you need to know any info. about ILC we could talk.

    Jackie: There is an ILC forum on this site which is really helpful.  There are lots of knowledgable ladies there

    · Share on FacebookShare on Twitter

Categories