Pleomorphic LCIS and Research

Options
13

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    minnesota-----gyn's definitely differ on this. Mine wasn't concerned at all about the uterine fibroids (I was on tamox), only about  an ovarian mass that was growing larger and larger. I ended up having a TAH/BSO (I couldn't find any reason to keep the uterus, I was done with having kids many years ago), but he left the final decision to remove everything up to me. I'm glad I did----turns out cysts were already forming in the other ovary and in the fallopian tubes as well, so there were problems everywhere.

    Anne

    · Share on FacebookShare on Twitter
  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Minnesota - I have microcalcifications in the other breast, so that's where the dye will go to identify the sentinal node on that side.

    I can definitely identify with the stress of indecision.  That's what I meant when I said that making the decision has brought me peace. The only thing I am waiting on now is validation of the diagnosis from Sloan-Kettering.  If they verify PLCIS, I'm getting the bilateral mastectomy - even if the doctor's recommendation for treatment is something else.  I'm with Minnesota - I don't want to be sitting there someday getting chemo and knowing that I could have stopped this whole thing from happening.  I was indecisive for about two days, then I knew what I wanted - the "moving on" as macksix puts it!  I've got too much crap to do in the next 40 - 50 years to spend it worrying about breast cancer, or worse, battling breast cancer!  The boobs are goners, as far as I am concerned.

    One piece of information from my doctor was sobering, however.  He said that as a result of his research, he knew of two cases where a mastectomy was done for PLCIS, and they not gotten clear margins at the chest wall.  So I needed to be prepared for that potential, especially since the margin that was not clear in my lumpectomy was the one towards the chest wall.  If that happens, MRIs would be used for monitoring, and we would be talking about tamoxifen again.

    Cathy - I'll be thinking of you this week.  Prayers and good vibes are definitely headed your way!

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Eve,

    SNB dye in most cases is injected into the aureola and the blue dye follows a path to the nodes. If done bilaterally both sides would be injected, at least that is how it was explained to me.

    · Share on FacebookShare on Twitter
  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Omaha Girl - I assumed that the dye would go at the site of the calcifications, since the surgeon said that he would do a sentinel node biopsy on that side because of them, but you may be right.  I will ask him about it.

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited January 2010

    I spoke with the Dr.at Sloan last night and "good news", she has gotten approval to do the study. They are creating all the forms etc and then she will send me an e-mail address so that all who wish to participate can contact her office. I am sending up prayers that this disease will be well studied and that future women will be well advised in how to treat this disease.

    Linda

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

    OmahaGirl that is great news!!!! Thanks for making us aware of this. 

    Hopefully if they start studying this better, they can learn more about PLCIS.

    Cathy

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited January 2010

    How are you feeling Cathy? You have been in my thoughts and prayers.

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

    Thanks OmahaGirl.  I am doing pretty good, considering.  I can't say that there is really pain, it is a real uncomfortable feeling and very tight. Also anxious now to get the results from the pathology. 

    · Share on FacebookShare on Twitter
  • Minnesota
    Minnesota Member Posts: 923
    edited January 2010

    Fo mykids - do you have any idea how long it might take to get your path results? don't let the pain get out ahead of you, if it starts to feel too uncomfortable - take something!

    Omaha Girl - such great news about the study! Thanks so much for letting us know about this!

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

    Hi Minnesota

    I have an appointment with the surgeon on Feb 1 to get the results.  I know it is a long time, but my surgeon will not give results over the phone and I am traveling 1000 miles away.  So I think they book the appointment when they know for sure the results are in. I would be so frustrated if I were to travel there and they didn't have all the results in yet.  I have been taking something called gabapentin.  It is supposed to be for nerves and pain.  Have you heard of this? So far it is mostly uncomfortable.  I have heard one woman on here describe as  feeling like being wrapped in duct tape.  I can relate to that.

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Cathy, I take gabapentin too, it helps me sleep at night and not hot flash since I take Aromasin. However, I think you should ask for Vicodin or something for when it is really uncomfortable. Just my 2 cents and you can take the two of them together however, it will make you very sleepy.

    · Share on FacebookShare on Twitter
  • cornellalum
    cornellalum Member Posts: 191
    edited January 2010

    Cathy - glad to hear that you are doing mostly well, although I'm sorry you have to wait so long for results.  I'm wondering if PT would help the tightness.  There is a PT practice here that advertises that it specializes in post-mastectomy therapy.  I'm going to call them and find out what exactly they do, and what it is supposed to address (tightness? lymphedema?)

    OmahaGirl - do you have any information on what the study is going to be focusing on? Is it going to be a pathological study, or is she going to try to get clinical information as well? There was a poster discussion at the San Antonio symposium that looked at molecular alterations in PLCIS.  It didn't address treatment or clinical outcomes, however, so was really no help to those of us looking for guidance regarding treatment.

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited January 2010

    Cornellalum, still won't be any help to those of us looking for guidance. This is a tissue study, but it has to start somewhere I guess.

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited March 2010

    The study is ready to rock and roll, so if you still wish to participate and you have been biopsied and the pathology revealed Pleomrphic LCIS please PM me and I will give you the information you need to partake in the study. Our tissue's will be studied not us !

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited March 2010

    Hang on ladies Bless just told me that she was told that only women who had their surgeries at Sloan were being accepted into the study. I know this isn't true so I just e-mailed the Dr. to straighten this out Undecided Okay that was quick Dr. King wrote me back and said that policy is not in effect for this study. The study needs all of us! So, if you get that response just tell them they are wrong and to check it out with Dr. King!!!!!!!!!

    Linda

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

    Hi Linda

    I just thought I would let you know that I received a couriered envelope today from Sloan Kettering with the consent forms to fill out to participate in the study. 

    Thank you so much for letting us know about this study. Hopefully the research they do, will help them to better understand this disease.

    Take Care

    Cathy

    · Share on FacebookShare on Twitter
  • macksix6
    macksix6 Member Posts: 201
    edited March 2010

    Me too, I got my packet today. I agree, hopefully they will be able to figure out who is at risk with this PLCIS stuff and how to treat it.

    Stephanie

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited March 2010
    Oh goodie the sooner they figure this out the sooner it can help others, maybe even us. Thanks ladies for sharing. Hope all is going well for both of you! I am moving along cautiously and was bummed when I thought that I might have to stay on AI's a long time but if no reoccurances then okay.. My new thoughts however, are my first grandchild is on the way so I can be all consumed with something besides BC Smile Stay in touch and let me know how life is going from time to time.
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Congratulations on your first grandchild.  How exciting!  Enjoy him/her when he/she arrives.  It is so nice to hear some positive and pleasant news.

    My attention for the next few months will be on upcoming DIEP reconstruction (May 11).  I am so looking forward to having it done, and to try to move forward and start thinking about something other than breast cancer.  (if that is possible, but I will sure try hard)

    Do you know how many PLCIS ladies they ended up being able to get?  and/or if they are still looking?  I had appointment with my breast surgeon today.  This is the one that I have continued to keep informed as thing have transpired, to educate him.  He explained that they have since my diagnosis, had one other lady diagnosed with PLCIS in my city.  If you think they are still looking I can try to get the information to her, through the surgeon or something. The more the better.

    Take Care

    Cathy

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited March 2010

    Thanks Cathy, I think we only have 12 so far, and so if there is another woman with PLCIS it would be worth a try.

    I will keep you in my thoughts and I too believe that once you have completed your reconstruction you wil be able to think less about BC than you do now.

    ((Hugs))

    · Share on FacebookShare on Twitter
  • Minnesota
    Minnesota Member Posts: 923
    edited April 2010

    I'm in New Orleans and won't get my packet until I get home - I hope they don't give up on me before I get back and respond!

    I had my PM on the "non-cancer" side on Tuesday morning with immediate nipple-sparing GAP recon. I am so relieved to finally have all the thinking and worrying and wondering behind me! Really, I looked down at the new girl and she looks exactly the same, except for a scar from about 4 inches below my arm to the nipple and she is swollen and bruised. Really, I thought to myself - this just was no big deal and now I don't have to seriously worry anymore! I've lived with the worry so long and now it's just gone! Also, I had a final important piece fall right into place the afternoon before my surgery, and I am so grateful - I had my appt with the breast surgeon - Dr. Stolier - who would be doing the mastectomy part of the surgery before the recon part. This man is very highly respected - teaches, writes articles, did pioneering work on nipple-sparing, etc. Well  it soon became clear that here was finally a doctor who actually knew more about PLCIS than I did! It was amazing! And he talked about some of the studies we have seen and the work being done on this, like at MD Anderson and about the cellular structure, etc. I mean, I was blown away to finally be able to talk to an expert about this, finally! And you know what he said to me? - FINALLY a doctor said to me?! He said, "I think you are absolutely making the right choice in having this surgery. 30% risk is just too high." And he had even actually read the surgeon's report from before and how when they saw the cancer in my breast duing the lumpectomy, they were all kind of thrown for a loop and didn't know what they were dealing with, and the fact that it was so extensive added to to why he agreed with my decision. Anyway, I felt so relieved to finally have someone knowledgable enough about this that I could actually trust hs opinion, and to have him concur with what I had decided based on just my own (and all of our own) research. I almost cried right there! And I told him how much it meant to me to have him say that to me.So I am finally, totally at peace with all this, and I can tell you that it feels sooooooooooooooo good! Thanks to all of you for your support and info, and this study coming up!

    Eve

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

    Eve I am so happy for you to have this now behind you.  I have seen on these boards how you have struggled with this for such a long time, not knowing what to do with the PLCIS? It is so nice to hear the relief in your post.  It must have been so reassuring to speak to someone so knowledgeable about PLCIS who can help you knowing you made the right decision.  When will you get the results from the PM?

    Wishing you the best on your road to recovery,

    Take Care

    Cathy

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited April 2010

    Yeah Eve, so glad for you, I too have spoken with Dr. Stolier and he is so awesome and he is Dr. King's mentor, the Dr. who is doing this study!  She told me last year if I was ever to do the PBM + DIEP that he was the guy to go to.. I am just so happy for you.  How are you feeling, is it different than last time?

    Linda

    · Share on FacebookShare on Twitter
  • leaf
    leaf Member Posts: 8,188
    edited April 2010

    What a relief to find a doctor like that! I'm so glad you took the path that you did. Thank you for sharing his take on this.

    Wishing you a very speedy recovery.

    · Share on FacebookShare on Twitter
  • cornellalum
    cornellalum Member Posts: 191
    edited April 2010

    Eve - Hooray! I'm so glad you came through the surgery so well, and I'm happy that you are feeling so good about your decision!  And "hooray" for a doctor who finally understands!  I feel better hearing what he said, and I wasn't even there.  Give him a big thank you from us.  Remember I told you how good it feels to be on the other side of this whole thing?  I wasn't making it up.  Will you get a chance to have any fun while you're in New Orleans, or are you going straight home from the hospital?

    Linda - I got my packet, and it's signed and back in the mail.  I don't know if you were counting me in the 12 or not.  (doesn't 12 seem like an awfully small number???)  Congratulations on the upcoming grandchild!  That is awesome!

    I am continuing to recover from my mastectomy, and things are going well.  I had a little trouble with an infection, and a surgical wound, but I am now headed in the right direction.  I am also looking forward to getting on with life (although no grandchildren yet, please) Smile

    · Share on FacebookShare on Twitter
  • Minnesota
    Minnesota Member Posts: 923
    edited April 2010

    Thanks you guys!

    Formykids - I don't know when I get the pathology report But, but Dr. Stolier said everything looked great - he certainly did not find what they found last time! But I'll be very interested to see what they found under the scope.

    Omahagirl - That is amazing that Stolier and King are linked that way! do you know where he was teaching her? This definitely feels different from last time. So far, my physical discomfort is almost non-existent, tho I am on good pain meds! My DIEP was a tough recovery, as the skin was pulled so tight on me. I think it's different for different women. I couldn't stand up straight for weeks and weeks. I can totally sit normally with my SGAP, the incision is above where you sit. I know there is some pain there, of course, if I stop with the pain meds (and I still have the last of that cannonball-like thing that has a tube running into the incision area). But my movement is pretty unrestricted,unlike with DIEP. Altho it did hurt when I stretched too high to catch some beads on BOurbon Street the other night... Won't do that again! I've thought about which of these procedures I think is "better." While DIEP was tough, I loved the abdomen it gave me! With GAP, I don't get any improvement to my body, tho some women would, So I guess it all depends...

    Cornellalum - Yes, it is soooo great on the other side. You were right! And I have been having plenty of fun in New Orleans! I have a post-op appt on Wednesday and we leave after that. so we're had since Saturday out of the hospital and about 2 days before, just being tourists, I really love this city!

    · Share on FacebookShare on Twitter
  • cornellalum
    cornellalum Member Posts: 191
    edited April 2010

    bump for khandler

    · Share on FacebookShare on Twitter
  • macksix6
    macksix6 Member Posts: 201
    edited May 2010

    I just received a letter from Dr King stating that they had received all of my paperwork and that they were in the process of obtaining my tissue samples for the study. I am so excited and hopeful that they will be able to answer many of our questions on PLCIS.

    · Share on FacebookShare on Twitter
  • OG56
    OG56 Member Posts: 897
    edited May 2010

    Yeah great news, I hope they get moving on this real soon, wouldn't it be great if they actually came up with some answers and we didn't have to second guess stuff. Has everyone that contacted them heard back??

    · Share on FacebookShare on Twitter
  • Minnesota
    Minnesota Member Posts: 923
    edited May 2010

    I also just got a letter saying they were going to get my tissue samples!

    · Share on FacebookShare on Twitter

Categories