The Other Shoe is Dropping...After 13+/8+ Years

Options
LindaLou53
LindaLou53 Member Posts: 929
edited January 2015 in Just Diagnosed With a Recurrence or Metastasis

I'm a 2x BC survivor diagnosed with 2 separate primary breast cancers 5 years apart, the first in 2000 and second in late 2005.  The second dx was the worst and I knew the odds of remaining NED were not good.  I have been so grateful and hopeful though because I had reached my 13/8 year anniversaries feeling like I just might beat the odds.  Things started getting a little concerning last July when an annual CT showed a slightly enlarged pretracheal node plus we found what seemed to be palpable lymph nodes at the base of the neck. A followup CT of the neck, however, did not find any worrisome lymphadenopathy and a Chest Xray this past January was perfectly normal.

I had a CT of Chest/Abdomen/Pelvis 2 days ago and just received the written report yesterday.  I am scheduled to see my oncologist next Monday to discuss further testing and treatment strategies.  Here is the short list of what was found on the CT:

  1. Slight interval increase in size of a few mildly enlarged mediastinal and left hilar lymph nodes.  There has been interval decrease in size of a previously noted right pretracheal lymph node.
  2. Retroperitoneal, periportal and portacaval lymphadenopathy compatible with metastatic disease.
  3. Sclerotic lesion in the right posterior L5 vertebral body and right pubic bone compatible with osteoblastic metastatic disease.
  4. Enlarging right adrenal mass. Metastatic disease cannot be excluded.
  5. Progressive dilatation of the right renal collecting system and right renal pelvis which is moderately enlarged.  These findings may represent a UPJ obstruction.

I suppose there is a silver lining in the fact that the CT states the major organs all appear to be "unremarkable in appearance".  My husband continues to emphasize one statement in the report which says "these findings represent metastatic disease until proven otherwise".  He is not willing to accept it until the biopsies and pathologies confirm or deny.

So Monday we will discuss further testing and treatment plans with my oncologist.  Today I am in my sewing room....my personal space where the rest of the world fades for awhile...continuing work on a quilt I am making for my sister's birthday in April.  

I am not shell-shocked because I have always known the high risk nature of my diagnosis.  I am more saddened and contemplative at this moment.  Not quite ready yet to pull together ranks and throw all my energies into developing a battle plan but I expect that will happen eventually.  I certainly will appreciate any insight or tips from those more experienced to help me navigate this new path.

Linda

Dx 7/14/2000, IDC, 1cm, Stage IIa, Grade 1, 2/7 nodes, ER+/PR+, HER2-

Dx 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2-

Dx 3/21/2014, ILC, Stage IV, 1/1 nodes, mets, ER+/PR-

Surgery 08/11/2000 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)

Chemotherapy 08/30/2000 Adriamycin, Cytoxan, Taxol

Surgery 12/05/2005 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)

Chemotherapy 12/23/2005 Taxotere, Xeloda

Hormonal Therapy 04/07/2006 Aromasin

· Share on FacebookShare on Twitter
«134

Comments

  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2014

    Hi Linda, breath deep and let it out slowly, bone mets are the best to have if you must have mets as they do not interfere with the internal working.  Wow! Twice dx!  Amazing!  Such a long time already to be dealing with BC.

    I have bone mets and am just a few weeks shy of five years with them and doing well.  Once you have your treatment plan in place and you get any pain under control as well as getting your head around the dx you will find that life will go on pretty much as normal with a few adjustments.

    Ask questions as you need as there are plenty of us here to answer.  Good luck with everything!

    Love n hugs.    Chrissy

    · Share on FacebookShare on Twitter
  • bevin
    bevin Member Posts: 1,902
    edited March 2014

    Dear Linda, I'm sorry to hear of your recurrence and progression. Praying for you.

    · Share on FacebookShare on Twitter
  • GemStateGirl
    GemStateGirl Member Posts: 168
    edited March 2014

    Linda, I don't often post but I've always read your very helpful comments about your experiences with breast cancer and lymphedema.  I'm sorry it seems like you've progressed but there's always a chance you haven't until you see some biopsy results.  

    I was diagnosed with bone mets in December and it was actually easier to deal with than the fear of a recurrence which was very likely with my original diagnosis.  I started Faslodex and Zometa right away and it's been a very easy treatment--I go to the cancer center once a month for about 3 hours for blood tests, the Zometa infusion, and the Faslodex shots and otherwise I lead a pretty normal life.

    You've done so well so far and if you do have mets my guess would be that you continue to do well and have many good years ahead of you.

    I'm hoping your husband is right but, if not, you seem to be the type of person who will make the best of the situation.  I'll be thinking of you.

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited March 2014

    LindaLou,  Like your husband, I hold onto the hope that your biopsy will prove you haven't progressed.  Your sewing room and the quilting sound like just the thing.  For me it's my daughter's old bedroom, purring cats, and knitting.  Words are really inadequate, but I am sending you lots of warm thoughts and hugs tonight.  G.

    · Share on FacebookShare on Twitter
  • kcshreve
    kcshreve Member Posts: 1,148
    edited March 2014

    Thinking of you, Linda.  No words, just hugs.

    · Share on FacebookShare on Twitter
  • BabyRuth
    BabyRuth Member Posts: 264
    edited March 2014

    Linda- sending you hugs and prayers.  It is always hard waiting.  Time seems to just drag by.  I have had 2 recurrences with in the last 2 years.  Every time I received the news it was just heart breaking at the time.  But after I regrouped I always came back ready to fight.  I am so sorry that you are going through this but we will all be here to support you.  Let us know what you find out tomorrow.

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited March 2014

    LindaLou, wishing you the very best of luck today.  I admit that the CT words don't sound good, but your oncologist may have more experience interpreting "radiology-speak".  Maybe the radiologists at your center are more pessimistic than most.

    You'll find that once you have a plan and start carrying it out, life will be [more or less] the same as it was yesterday.

    · Share on FacebookShare on Twitter
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    Update:  Thank you everyone for all the kind thoughts and wishes!  I had my appointment with my oncologist today.  The bottom line is she wants to get a biopsy first to confirm the pathology.  

    The differential dx is:

    1. Breast Cancer Recurrence (most likely) 

    2. Lymphoma (possible based on the presentation)

    3. Sarcoidosis (unlikely)

    I am scheduled to see a Head/Neck surgeon this Thursday and he may decide to do a simple biopsy the same day or have me come back later if he decides to do a more surgical procedure.  I have a palpable lymph node at the base of my neck which seems to be the most accessible node for biopsy/excision.  The others are all deep in my chest or abdomen and would require a more invasive procedure.

    If it is a BC recurrence, my oncologist plans to stop the Aromasin and place me on Faslodex injections.  3 months after the start of Faslodex she will repeat the CT scan.  If the current status has not regressed or stabilized, she will move on to Afinitor + Arimidex.  If the 2 bony lesions progress we will need to start an additional med, most likely Xgeva.

    As my oncologist said a recurrence in my case is "not unexpected but is also not a disaster".  The fact that I still feel good and there are no signs of organ involvement is a positive indicator.  There are many options at this point and if I respond well to hormonal therapy the chances are good I can get several more years of quality life.  Generally speaking my oncologist says the length of time between completion of active treatment and a recurrence is a good indicator of the aggressiveness of disease and possible length of survival time after recurrence.  There are many variables of course, and cancer pathologies can change which could impact survival time, but I am encouraged that I had an extended period of NED these last 8 years.

    I must keep reminding myself....one day at a time....one day at a time!

    Thank you again for all the support and encouragement!

    · Share on FacebookShare on Twitter
  • Denny123
    Denny123 Member Posts: 1,886
    edited March 2014

    Linda,

    Sorry to read this.  I am a 12 years survivor of Stage 4 BC with original mets to my liver.  Was in remission for 6 years, but presented 2 years ago with your #1-chest nodes.

    Tried Aromasin for 3 months, didn't work, then on to Faslodex (we have a Faslodex forum-look for it).  Nodes were still growing, tried Gemzar (which saved my liver). 

    Gemzar after 4 months made an 80% decrease, but now failed.  So I am now on Kadcyla.  Still on Faslodex too.

    Good luck!

    · Share on FacebookShare on Twitter
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    Wow Denny123!  12 years is wonderful!  So good to hear your story right now...it is very encouraging to me!  I hope the Kadcyla works well for you and those chest nodes get knocked out permanently!

    Thanks for the tip about the Faslodex forum...I will definitely check it out.

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited March 2014

    Everything you need to know about Faslodex:

    http://community.breastcancer.org/forum/8/topic/81...

    Here's hoping you don't have to join us.

    · Share on FacebookShare on Twitter
  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2014

    I would like to add my support and best wishes for a positive outcome for whatever these scans bring to your life! Your avatar evokes deep emotions of gratitude to me as it was your thread with pictures of what it looked like to be flat that emotionally supported me through my biopsy, diagnosis and double mastectomy. I want to take this opportunity to let you know (again!) how very, very grateful I am for what you did for me during some of the darkest hours of my life.

    I only wish that I could give you the same peace, but will certainly put you at the top of my prayer list for an "uneventful" biopsy. (I, too, like when the reports say "unremarkable" but did argue a bit on that comment after a brain scan!) 

    · Share on FacebookShare on Twitter
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    Pajim: Thanks for the Faslodex link!  That will come in handy if I have to start taking it.

    Barbe1958:  Thank you for those kind comments!  I have been helped by so many special ladies on these forums, it warms my heart to know I may have helped some others along the way also!  That is the beauty of these forums....together we are a wealth of information and each one of us has something to contribute.

    Update:  I am scheduled for an open excisional bx of a palpable node in my neck this coming Friday the 21st.  It has to be under general anesthesia since they need the whole node out to run the necessary pathology and the node is close to my spinal accessory nerve so they don't want to take a chance on me moving if done only under local.  So the actual surgery will be 30 minutes but I will spend 3-4 hours in recovery.  Hopefully will have the path results by the following week when I will again see the surgeon and my oncologist.  I'm trying to stay positive and hopeful for good news....but think I am fairly prepared for whatever happens.

    Thank again to everyone for all the good thoughts and wishes!  :)

    · Share on FacebookShare on Twitter
  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2014

    LindaLou, you know and I know, that staying positive is not always an end result! You certainly have the right to a good cry and a (small) pity party at this point. We get it.

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    LindaLou, just now discovering this thread, and I'm so sorry for this new challenge. Please know you have my prayers for smooth sailing through the biopsy and all the days ahead. For your DH too--it's never just about us, is it? Will be in your pocket this Friday. Be well!
    Binney

    · Share on FacebookShare on Twitter
  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited March 2014

    just seeing this Linda. So sorry you are having to deal with this.   Lots of hugs. 

    Indeed you have helped and inspired so many on these Boards. 

    We are all here for you saying prayers that all goes as smoothly as possible. 

    · Share on FacebookShare on Twitter
  • carol57
    carol57 Member Posts: 3,567
    edited March 2014

    LindaLou, your hope that you 'may' have helped some others along the way?  It's much more than 'may,' as you have given so much support and information to so many.  I'll be thinking of you this Friday and going forward.  What a friend you've been to so many of us, and you surely know that your many friends here are rooting for you in all ways possible. Hugs to you and your DH.-- Carol

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2014

    LindaLou, Just discovered this, and wanted to let you know that I'm thinking about you, and hoping so hard that you continue to do well. Your knowledge and shared wisdom have touched so many of us. 

    Please let us know how you're doing.

    Kira

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited March 2014

    LindaLou-First I want to say I love your avatar name-my sister's name is Lindy and I always call her LindyLou!

    Second and more important, I just want to let you know how much you have helped me. Your photos of going flat gave me more confidence of being flat, realizing that it is much more noticeable to me, and other's, for the most part, don't even notice. You look beautiful in you photos, flat or not.

    I am thinking of you and hope your biopsy goes well for you. Hoping for good news and that is something other than cancer.

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited March 2014

    LindaLou,  We'll be thinking of you as you have that biopsy tomorrow.  (The room may be a little crowded with all of us well-wishers there!)  Stay hopeful.  Hugs and more hugs,  G.

    · Share on FacebookShare on Twitter
  • dutchiris
    dutchiris Member Posts: 855
    edited March 2014

    One more well wisher here Linda.  

    · Share on FacebookShare on Twitter
  • Maggs09
    Maggs09 Member Posts: 193
    edited March 2014

    LindaLou53, when I saw your initial post few days ago, I was in shock and couldn't even respond... I pray every day that there is some other, less dangerous explanation. Finally today I came back to the forum and just finished reading the entire thread. I'm so sorry that you maybe facing this again! You have been such a help and inspiration to me and others through this journey. I have faith that everything will go back into remission for very many years! 

    Please, keep us posted! 

    Magda

    · Share on FacebookShare on Twitter
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    Thank you everyone for all the prayers and good thoughts! I had the excisional biopsy of the neck node early yesterday morning. I have minimal discomfort at the surgical site, but have been experiencing unusual right flank pain, low back pain and cramping similar to the Flu or a bad period.  It may be slightly better this morning.  I guess that could be due to the general anesthesia??   I have read that some anesthesia medications can cause flu-like muscle aches and pains. 

    I should have pathology results by mid next week. I followup with the surgeon next Thursday and my oncologist next Friday.  I will keep you all updated as soon as I have new info.  I don't mind crowded rooms or full pockets at all!  Thanks for being there with me.  

    · Share on FacebookShare on Twitter
  • Marple
    Marple Member Posts: 19,143
    edited March 2014

    My thoughts are with you Linda.  Sending you strength and a hug.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited March 2014

    Linda, glad to hear that the surgery went well. Rest and be good to yourself. 

    · Share on FacebookShare on Twitter
  • peacestrength
    peacestrength Member Posts: 690
    edited March 2014

    Linda - sending you much love today!

    · Share on FacebookShare on Twitter
  • leaf
    leaf Member Posts: 8,188
    edited March 2014

    I, too, have been so grateful for your help for all of us.  You have made lots of people more comfortable for just knowing how you can handle difficult problems.  Your photos of being flat and not were so helpful!

    Yes, meds used in general anesthesia can cause muscle cramping.  Even morphine can cause muscle cramping.  I had morphine during one of my surgeries (while I was out under general anesthesia) and didn't know it. Don't ask me how they could tell I was in pain. I'm so glad they put you out so you didn't have to worry about moving.  

    Please feel our caring and love. 

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    Thanks for keeping us up-dated, Linda. Glad that part's behind you and hope you'll feel better and better as the day progresses.  Love, hugs, prayers,
    Binney

    · Share on FacebookShare on Twitter
  • doxie
    doxie Member Posts: 1,455
    edited March 2014

    Linda,

    So sorry you are going through this.  You are such a source of strength for many of us.  My thoughts are with you.  

    · Share on FacebookShare on Twitter
  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2014

    Keeping you pretty high up in my prayer list, sweetie!

    · Share on FacebookShare on Twitter

Categories