Pleomorphic ILC

1…78101213…17

Comments

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2010

    Christy: Of course you're welcome to join this group. Mine was grade 3 too but also HER2+ve which is even rarer. How much did the chemo shrink your tumour before surgery?

    Sue

    · Share on FacebookShare on Twitter
  • raeinnz
    raeinnz Member Posts: 815
    edited May 2010

    Hi Sue

    How's it going in Os? Has the fatigue lessened any? Found something to make you a little less bored?

    We have kept up the biking and are doing up to 30 kms when time permits (that is a mission - takes about 1hr 45mins - geez) but try to do at least 40 mins a day.  It is very cold some days now though and I am thinking I won't like this when the worst of winter arrives - ugh!

    Vacuuming to do :(   have been putting it off all morning so better get onto it

    Rae

    · Share on FacebookShare on Twitter
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2010

    Hi Rae,

    I'm not tired at all and I'm nearly finished the radiation treatment - only 8 to go!!! My skin is coping really well - no burning yet. I do feel really really well now. Still a bit achey but have started taking Glucosamine and Fish oil on instruction from my oncologist. Too soon to notice much difference though.

    I'm still bored but have been polishing furniture, buying stuff like an HD TV, sorting out my clothes, chopping in the garden etc. I did go into the city to visit my work. That was really good, I do miss them all so much. I hadn't seen them since last October.

    I haven't dusted off my bike yet, I think I'll wait a few more weeks.

    Love to NZ

    Sue

    · Share on FacebookShare on Twitter
  • raeinnz
    raeinnz Member Posts: 815
    edited May 2010

    Sue - that is fantastic news!! - I am so glad that the radiation is not causing you any problems and that you are feeling so much better.  When do you think you will be going back to work?

    Several very large trees have been removed in front of us in the last couple of days and now we have our expansive view back.  New people moved in and they didn't like all the big trees shading their property so they are gone - yay!

    Rae 

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited May 2010

    Hello AnacortesGirl,

    All is well with me; thank you so much for asking.  I've been making an effort to stay away from the boards, but I do check in.  

    So, you have been declared "pleomorphic".  I don't know what that really tells us about our treatments or prognosis.  It seems like there is a whole range within that "pleomorphic" grouping.  The research is sparse, underpowered, and/or old as you have found.  We are so rare, and even eliminated from many studies because of that.  There just isn't anything useful.  If I can find anything that may be helpful I will certainly see that you get it.

    What are your doctors considering in terms of treatment now?  I, too, needed more chemo after surgery.  I had six rounds of AC all together.  I wanted Avastin, too, but was denied because it was too new and only being used for metastatic patients. 

    We are a unique group here, and you are welcome to join.  We may be able to help each other, if in no other way than to know we are not alone in this.  I am holding you in my thoughts.  Warm hugs tonight.  G. 

    · Share on FacebookShare on Twitter
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2010

    Rae: I've sent you a PM

    Sue

    · Share on FacebookShare on Twitter
  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited May 2010

    Sue -

    How much the tumor shrunk before surgery is a good question.  I've poured over my scan results again and I just don't think the answer will be there unless the onc knows something I don't.  The measurements given in the MRI went from 6.5 x 8.0 x 4.4 to 5.9 x 9.0 x 4.8.  Since I had many leisons throughout the breast I'm sure this area was focused on the densest area which is included the tumor plus.  The never went back with US to get exact measurements on the tumor.

    Thank you for the welcome!

    Gitane -

    I'm so glad to hear you are doing OK.  Sometimes it's a little scary when we don't hear from women for a while but I completely understand your desire to stay away from the boards. 

    I'm talking with my trial onc on Friday and regular onc on Monday.  So I'm expecting some tx options.  If it's chemo then I'd love to do a parp inhibitor for the BRCA mutation but since all the drugs seem to still be in trials for advanced cancer then I doubt that's an option.  Obviously the Sutent didn't help much on the nodes but I still have postive thoughts that it was killing or preventing any small tumors that may have been elsewhere.

    Well I will definitely ask both oncs about the pleomorphic finding.  If they try to disregard it then I want to know why the pathologist feels it is important enough to put it on the report.  If I get any insights at all then I will be sure to share.

    This hit me pretty hard since I was so optimistic about the trial.  I thought I was OK after a couple of days but I continue to struggle with it.  Getting closer to the appointments and being able to discuss and plan are bringing back to normal. 

    · Share on FacebookShare on Twitter
  • cathmg
    cathmg Member Posts: 278
    edited July 2010

    Hi Pleo Ladies,

    Just wanted to check in and say "Hello." Went to see my onc for my regular checkup, and I am here at 2 years out, and so far so good. He has suggested 4 Zometa infusions, 6 mos. apart, so if Aetna can be talked into it, I will start those. I finally read my path report (I just couldn't do it before) and saw that I am stage 2A, and the tumor was smaller than the surgeon told my husband. Some comfort, I guess!  I asked my onc how the cancer could have been grade 2 with pleomorphic cells, and he said lobular cancer is rarely grade 3, so the pleomorphic aspect made it a grade 2.

    He also said about my reconstruction,"good cosmetic result." I guess that's onc-speak for "nice boobs!"

    Hope all is well with everyone,

    Catherine

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited July 2010

    Hi Catherine,

    Just want to say I'm so happy for you, celebrating 2 years is big.  Also, congratulations on the "nice boobs".  Your oncologist sounds a lot like mine.  I've got a check up soon, too.  I always have a build up of anxiety about this time.  No getting around it.   Hope all continues to go well.  Keep checking back, as I love to hear from the other pleo pals.  G.

    · Share on FacebookShare on Twitter
  • raeinnz
    raeinnz Member Posts: 815
    edited July 2010

    lol Gitane, pleo pals.  Any 'normal' people who heard that would think we were talking a different language wouldn't they? Guess we are really - we have had to learn the BC language pretty fast haven't we?

    Rae

    · Share on FacebookShare on Twitter
  • amlg1
    amlg1 Member Posts: 596
    edited July 2010

    I too am a pleo gal.Well time marches on,and so far so good.One more herceptin for me,I know which is odd for ILC.It scares the crap out of me,all of this rare things that came with this ILC.

    · Share on FacebookShare on Twitter
  • raeinnz
    raeinnz Member Posts: 815
    edited July 2010

    Hi Anna

    BC alone scares the crap out of me!  I try hard not to let BC define who I am though.  Glad to hear you are nearly finished your Herceptin. I see you are ER/PR negative - will you have any more treatment after Herceptin or is that it for you?

    Rae

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited August 2010

    Hello Anna,

    I think about you often.  It's so good to hear you are nearing the end of treatment.  Thanks for checking in here.  I'm scared, too.  I hate all the "rare things", too.  All the very best to you as you move past treatment.  G. 

    · Share on FacebookShare on Twitter
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2010

    Anna: I see you are another HER2+ve PILC like me and I thought I was virtually alone here. We must be special. Glad you are finishing your herceptin. I won't finish until Dec 8th. I'm feeling really well and have returned to work part time. 

    Rae: Work is going really well. The 3 half days is good. After this week I go to 4 half days. I'll just do what the rehab girl at work suggests. We just had a week in Sydney which was nice. My Auntie turned 80 so we went down for the party. I had another 3 days visiting with her and really enjoyed it.

    Sue

    · Share on FacebookShare on Twitter
  • amlg1
    amlg1 Member Posts: 596
    edited August 2010

    Well thank you G for thinking of me.As you know there are just a few of us ILC that are er- pr- and her+.I too always like to see people on here,that I haven't seen check in,for a while,I breath a sigh of relief.

    Sue..There are a few that are her+.I too also feel good.

    Hugs to all

    · Share on FacebookShare on Twitter
  • cathmg
    cathmg Member Posts: 278
    edited August 2010

    Just wanted to send positive thoughts and best wishes to you, Gitane, as you prepare for your appointment. Seems like I'm anxious the whole month prior-brings the cancer foremost in my thoughts. Know you have lots of company in what you're thinking and feeling...

    Catherine

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited August 2010

    Thanks, Cathrine.  Your positive thoughts and good wishes help.  Sometimes it is comforting to know others understand and care.  G.

    · Share on FacebookShare on Twitter
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2010

    Gitane: Best wishes from Oz for your check up - I'm sure it will go well

    Sue

    · Share on FacebookShare on Twitter
  • Jalsmama55
    Jalsmama55 Member Posts: 104
    edited August 2010

    I am also a newly diagnosed Pleo girl.. i have invasive lobular and lobular and ductal in situ high grade. im overall grade 3 er+ pr+ and her2-.. Still trying to find out what all of this really means.. Saw oncologist today for first time and have to have axillary node dissection to right arm because my gen surgeon said he couldnt "justify" doing SNB when i didnt have a biopsy prior to lumpectomy to even prove i had cancer,, so now im kind of regretting not allowing them to do biopsy first prior to surgery.. i had my reasons at the time though and probably made the right choice overall.. Have no idea what to expect with the ANB and i am opting for a double mastectomy at the same time.  Still need MRI, CT to clear any mets but praying nodes are neg and as the oncologist said "your gen surg got clear margins so we r hoping u r cancer free as of this point unless we prove otherwise".. Going to have 4 sessions of chemo after surgery then radiation then Tamoxifen for 5 years.. I'm still no new at this that I dont even know where to start.

    Prayers and positive thoughts to all of u! xoxo

    · Share on FacebookShare on Twitter
  • raeinnz
    raeinnz Member Posts: 815
    edited August 2010

    jalsmama55

    Sorry you had to join this group but glad that you have found us. 

    I have sent a Private Message with some information for you.  Click on the Private Message box at the right of the options bar at the top of the page.

    Rae

    · Share on FacebookShare on Twitter
  • sueinfl
    sueinfl Member Posts: 258
    edited August 2010

    Jalsmama55, I am sorry you have to be here, but welcome. I hope your nodes are negative. I hope you do well through the rest of your treatments.

    Gitane, I am wishing you a clear report at your check-up!

    Sue

    · Share on FacebookShare on Twitter
  • toomuch
    toomuch Member Posts: 901
    edited August 2010

    Sueinfl,

    I am new to this site and I was interested to read your treatment. I initially had a lumpectomy with 2/12 positive nodes. I am currently getting chemo. My oncologist is recommending radiation because the nodes had extracapsular extension of the tumor. I want to have a bilateral mastectomy but the timing and reconstruction with the radiation is complicated. I've had one plastic surgeon tell me that I'm really only a candidate for the thigh/hip free flap and this really scared me. Are there any pleos out there that had radiation and implants? I have 14 weeks to figure this part out while the chemos flowing. I have spent hours on this site, learned to much. Thank you to all who have posted before.

    · Share on FacebookShare on Twitter
  • sueinfl
    sueinfl Member Posts: 258
    edited August 2010

    toomuch, I pm'd you with my number. I hate that you have to be here, but am happy to share what I have gone through.

    Sue

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited August 2010

    Thank you, Sue.  I appreciate your support so much.  Tomorrow is my check up.

    toomuch,  Hope the chemo treatments are not too hard on you.  Check in if you feel up to it.  Good luck, too, with the surgery decisions.  There is so much to learn.  I didn't have rads, so I'm not much help to you with that.  I just had bilateral with saline implants.  Big hugs!

    Jalsmama55,  I hope all your scans, tests, and ALND go well and that the results are good.  We are all overwhelmed at first.  We are here to talk to and to help if/when we can. 

    · Share on FacebookShare on Twitter
  • raeinnz
    raeinnz Member Posts: 815
    edited August 2010

    Gitane - I have my fingers crossed that you have a clear report from your check up.  I have dreaded going to the dentist all my life but these BC check ups are worse.  They just bring the memories flooding back when I am trying so hard to move on.

    toomuch - welcome to the boards.  You will find information, understanding and support here whenever you need it.  Very apt name - everything is TOO MUCH when you are first diagnosed and trying to work your way through all the jargon and decisions.  I too hope chemo is not too hard on you and that you are able to come to a decision that you can be happy with soon.  I had bmx to avoid radiation with immediate one step saline implants so I can't help with the flap experience either I am sorry.

    Rae

    · Share on FacebookShare on Twitter
  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited August 2010

    Hi Gitane,

    Good luck with your check up.  I'm thinking it will be fine.  I go to my oncologist on the 25th and know how the anxiety can get to you.  I'm thinking positive thoughts for both of us. 

    Take care,

    Nancy

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited August 2010

    Thank you, Nancy.  The visit is behind me now.  No surprises, YES!  The zometa infusion went smoothly and I'm slowly coming down from the anxiety that builds before these visits.  You'd think after some time it would let up.... well it has, really, but I still can't get past some of the worry.  I hope your visit is uneventful, too.  

    · Share on FacebookShare on Twitter
  • sueinfl
    sueinfl Member Posts: 258
    edited August 2010

    Congrats, Gitane! It almost feels like one person's good check-up is a victory for us all.  ;->

    · Share on FacebookShare on Twitter
  • amlg1
    amlg1 Member Posts: 596
    edited August 2010

    Glad to hear everything went smooth.Guess the fear never goes away.

    · Share on FacebookShare on Twitter
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2010

    Gitane: I'm so pleased to hear all went well. Are you now 5 years out? Well done!!!!

    Sue

    · Share on FacebookShare on Twitter

Categories