Help please -how did it get this bad & don't know what to do.

michele54
michele54 Member Posts: 152
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I'm really sorry if this is long but I don't know who else to turn to.  I feel like jumping out of my skin, breaking something or just screaming my head off.  I don't understand how I could go from feeling something was wrong in my left breast and having a mammogram to having ILC in the RIGHT breast.  The digital mammo showed a suspicious mass and a BIRARDS score of 5 so off I went for more testing.  Had a core biopsy that showed ILC so next came the CAT scan and bone scan.  Here is where things go really bad.  Thanks to the wonderful women on here I made some decisions and after reading about ILC and how it usually goes to the other breast - I pretty much decided on a bi-lateral mast with recon at a later time.  The chemo and rads were up in the air until tests came back.  So now the tests came back - can someone tell me how I went from not feeling anything to a MRI showing a 8.5cm mass?  Then - on top of that - the bone scan came back and it shows an abnormality.

The biopsy states that the mass is an "infiltrating breast carcinoma" that is ER/PR+ and HER2- and is classified as "invasive lobular carcinoma".

MRI said the same thing - ILC of the right breast but it also said - LMP 12/15/08.  Not sure what an LMP is and I had nothing done on 12/15/08 - didn't have the mammo until 1/5/09.

The MRI also said -

FINDINGS: There is a small amount of fibrograndular tissue which shows a mild degree and intensity of enhancement. Centrally in right breast there is a large irregular mass which measures 8.5 cm AP x 5.8 cm ML.  Nothing suspicious in the left breast.  There are scattered syb sm cysts bilaterally.  Fat containing lumph nodes are seen in the axillae.  The largest node in the right axialle measures 11x28 mm.  One end of the node is slightly bulbous therefore this is an indeterminate lymph node.  Recommend further management clinically.

THE BONE SCAN said I had a history of breast cancer which isn't really true - other than me there is noboby else with bc in my family.  

FINDINGS: There is a focus of increased radiotracer uptake in the region of the T9?t10 vertrbral bodies. This correlates with the findings on CT and is consistant with osseous mestastais.  There is a focus of increased radiotracer update in the left superior cetabulum and the left pedicle of LS, which are also concerning for osseous mestastaes.  No other foci of increased radiotracer activity.

Incidentially noted are foci of abnormal radiotracer uptake in c-spine, shoulders, knees, and ankles that are typical of degenerative changes.  (Getting old and slight arthritis).

IMPRESSION:  Abnormal bone scan consistent with osseous mestastais.

CT  SCAN:

Diagnosis (1) Suspected T9 osseous metastases.  Consider correlation with bone scan.  (2) Nonspecific small peripheral versus pleural nodules.  In the setting of known breast carcinoma, consider reassessment in three months.

A focal sclerotic lesion seen at the T9 level is suspicious for osseous mestastases, without other evidence of a lytic or blastic lesion.

OMG I went from dealing with all of it one day to hearing I'm probably going to die soon the next.  I can't stop crying and my brain is all over the place.

Has anyone had similar test results? I really don't know what to do at this point.

Thanks,

Michele

Also noticed I had a small esophagel hernia - no clue I had that.  Other body parts were normal.

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Comments

  • michele54
    michele54 Member Posts: 152
    edited January 2009

    Forgot to add that I've had back issues for years.

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  • Lories
    Lories Member Posts: 351
    edited January 2009

    Hi Michelle - I can understand how devastating this must be, but an 8.5 cm tumor is quite large. I am sorry I do not have a lot of experience reading these things, but someone posted this link the other day and it has all kinds of info in it. 

    http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf

    Have you met with your BS or surgeon yet?  Seems like she should help out on explaining this thing and confirming the results.  One friend's path report had a typo, changing mm to cm, so it would be good for them to check for you.

    I would take a deep breath and get them to explain something to you soon.  Hang in there.  Lori

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2009

    Michele, congrats on collecting all the scan info, it can be hard to interpret all those words let alone digest some of the scary words.

    ILC is a sneaky BC, it tends to from sheets and not will demarcated lumps so often presents as alocally advanced, larger tumor.

    The bone scan and CT results are concerning and your team may want to biopsy one of the lesions to see if their impression is correct.

    Do not jump to conclusions that you are "probably going to die soon". Even if you do have mets there are many wonderful treatments that can give you good QOL for many years.

    Once all the info is gathered and your team is sure of how to interpret it thay will present you with the plan. Having a plan will give you some control back. Right now your life is spinning on words and impressions....soon you will know and be able to act.

    This whole thing sucks...it is unfair...but you can do it.

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  • Jenniferz
    Jenniferz Member Posts: 541
    edited January 2009

    Ok, stop and breathe. I can't give you any good answers on your reports as I've not had them done, but someone will be along here soon to help you sort this through.

    Do you have a doctor that you can call on this? 

    Please don't think you are going to die soon. No one.......and I repeat, NO ONE can tell you if you are going to die soon. This is because no one knows. And IF you have cancer, there are many, many here that will hold you up in thoughts and prayers, and help you get your feet under you again.  They will guide you, answer your questions, and give you questions to ask your doctors as you move forward.

     Hang in there, my dear....helpful others are on the way. And, please know that I am sending prayers and good thoughts.

    Jennifer

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2009

    P.S. My tumor was 9cm...that was 3 1/2 years ago...:))))

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  • SimoneJ
    SimoneJ Member Posts: 65
    edited January 2009

    Michelle, I am sorry to hear about your news-do you have a bible if so read it, God will speak to you. I am praying for you right now. I also want you to know that the only person that knows when you are going to die is GOD-I don't care what the doctors say. I have my surgery tomorrow I have a 5 or 6cm tumor, they don't know and have not ordered any tests other than a biopsy, I wish they had done an MRI I have been having shoulder and joint pain for several months, my nurse told me to just take 1 day at a time. Michelle I feel your pain you are not alone. Please keep us updated and don't give up.

    Simone

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  • Hood1980
    Hood1980 Member Posts: 537
    edited January 2009

    LMP=Last Menstrual Period

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  • michele54
    michele54 Member Posts: 152
    edited January 2009

    AH DUH LOL.  Thanks - This is the first time I laughed all day.

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  • PeggyDixon
    PeggyDixon Member Posts: 125
    edited January 2009

    Dear Michele,

    Take a deep breath. I can't help you with your specific situation but I can tell you that I had a large ILC tumor too...as Maryanne said, ILC is very difficult to detect and therefore is often quite large when diagnosed. I didn't have anything weird on the catscan but I was having a lot of bone pain in the shoulder and hips which they thought might be mets but turned out to be arthritis. On these boards we know how hard it is to be at this point - you have some information but not everything and you haven't had all the tests you need nor have you seen a surgeon or oncologist (?). So, your imagination is going crazy and until you have complete information and a treatment plan in place it will be hard to be positive. At least that is what I experienced. All I can say is I hope you have some appts soon so you can get the info you need to move on. Meanwhile, come here and vent - ask questions - get the love and support we can offer. My tumor was bigger than yours (not that it's a competition lol) and I was diagnosed almost 4 years ago now.....and things are going fine so far. You will be in the same place. Sending hugs your way.

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  • michele54
    michele54 Member Posts: 152
    edited January 2009

    I have been diagnosed with arthritis in other body parts but shouldn't whoever reads the reports know the difference? 

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  • HensonChi
    HensonChi Member Posts: 357
    edited January 2009

    I had something that looked like mets in my C3 spine that was found in a bone scan.  They then told me to get an mri, and finally I had a ct scan of the area.  All three at different places.  They all said it was arthritis.  I sure was scared while I was waiting.  I was happy to have it confirmed by my surgeon and 3 different  places.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Michele - I'm sorry...you're dealing with this. Try to calm down...ask your doctors for some Xanax or Ativan. It really helps. Sometimes - for reasons unknown to me - the tumor appears bigger than it actually is. So there is a possibility that after the mast. it will be smaller.  When is your mast. scheduled for? Hang in there...try to be positive - there's lots of girls here with a similar diagnosis and they're doing well. Oh and...the fact that it's er/pr positive and her2 negative, is a very good thing. Best wishes.

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  • michele54
    michele54 Member Posts: 152
    edited January 2009

    I don't know how to thank all of you.  I'm still feeling my mortality closing in but not as bad as it was.  I've read other posts about the scans being read and mets were suspected BUT it ended up being arthritis - which I already have.  Plus I was in a car accident years ago and have had some back issues.  They did notice the arthritis on the scans - "degenerative changes" but if the docs could tell what they are, why don't they suggest that in all the areas? 

    SIMONEJONES - good luck tomorrow. You will be in my thoughts. Please let me know how you are okay.

    My doctor did give me Ativan and I took one plus a Tylenol PM an hour later.  My head has stopped spinning a little so I'm going to try to get some sleep.

    Also forgot - appointment with the Oncologist on Wednesday.  Anything specific I should ask him?

    Big hugs to all.............

    Michele

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  • PeggyDixon
    PeggyDixon Member Posts: 125
    edited January 2009

    Hi Michele - I just got up and was wondering how you slept last night?? We are all in different time zones so I hope you are still snoozing!! I'm picturing you lying there all comfy and am sending sweet dreams your way.....I am on Eastern Standard Time plus 1 1/2 hours so right now it is 9:30am. Keep taking those Ativan as you need them - they do help get you through this very difficult time. Peggy

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  • nash
    nash Member Posts: 2,600
    edited January 2009

    Michelle, sorry you're going through all this.

    A couple of things--you asked why they put history of bc on your bone scan when you don't have a family history--they mean your personal history. They have to put down why you're having the bone scan, and in this case it's b/c you have a personal history of bc.

    Second, when you see the onc on Wednesday, I'd ask him these things--1) can you also have a PET/CT? With the bone scan/CT findings, I think that would be a good idea, 2) can you have a bone biopsy--the other girls mentioned this already, and it's a good idea, 3) in lieu of a biopsy, can you have an MRI of the bone areas in question? 4) ask for your path report from the biopsy, so you're clear on the ER/PR/HER2 status of your ILC. You're probably ER+/PR+/HER2-, but you need to know for sure. If you are ER/PR+, ask the onc if it turns out you do have bone mets, if you can go on hormone therapy first before trying chemo. The surgical path report is the most important, but at least get the biopsy path report for now.

    If it turns out you have bone mets, be assured that some women can live 20+ years with them. 

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    Michelle, I know you are reeling, it is hard to take in all at once.  You will feel MUCH better once you get a game plan in place.  Ask your onc about the merits of surgery then chemo, vs chemo first then surgery.  If you do the chemo first they can judge how well you are responding to the chemo by the shrinking of the tumor.  Now having said that, I chose the surgery first cause I wanted to get that sh*t out of my body ASAP.  Also talk to them about having that bi-lat mastectomy as ILC does tend to mirror in the other breast or reoccur there.  You don't want to have to deal with this again.  Re-con will be easier also, they can match the breast up better when they do both. 

    The best advise I can give you is be your own advocate.  Some docs hate it when we do our own research and "talk amongst ourselves".  Hopefully you will find a doc who appreciates an active participant as a patient.  You have definately started out on the right road by getting copies of all your scans, etc.  Also as you have scans, biopsies, etc done, make sure ALL your docs are sent copies of them.  You always  want the right hand to know what the left hand is doing.

    Hang in there honey.  We are here for you.  We will cry with you or try to make you laugh every once in a while.  My sense of humor is the most precious thing to me and I swore to not let it be taken away from me.  Scream, cry, vent anytime you need to.  One day I threw myself on the  floor and cried like a baby.  It just gave me a headache so I put my big girl panties back on and tried to deal with it.  You can do this............. Marsha

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    Oh and BTW, the "history of breast cancer" on your bone scan was referring to you, not family.  They found it on the mamm, and confirmed it with the biopsy.  That was the reason for ordering the bone scan so that is why they list your "history".  I know to you it doesn't seem like "history" since it all seems to have happened so quickly.  Hugs, Marsha

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  • sandogger
    sandogger Member Posts: 68
    edited January 2009

    Hello,

    I know how you feel.  I have a 7.9 cm ILC mass which  was diagnosed in November 2008.

    I am currently undergoing chemo treatment prior to surgery.  I would think this is the recommendation that you will get.

    My bone scan was clean, but they said that there were "drixels" (spots) on my lungs.  The onc says that those could be there from 1) where I grew up or   2) just be there since I have had pnuemonia before.  I hope that is the case. 

    Be sure to get the best care that you can.  I am going to a dedicated cancer center through a University Hospital which does clinical trials, etc. and has the latest treatments.

    The history of BC is because you have been diagnosed.  I had that same question myself.

    Good luck and hang in there.  It is very shocking to get this diagnoses and I am trying to go through the chemo and prepare for the upcoming surgery later on this year.   It is a very difficult situation, but I am receiving a lot of support through family, friends, and other BC women. Cool

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  • michele54
    michele54 Member Posts: 152
    edited January 2009

    I really don't know what I would do without all of you.  I am very much feeling my own mortality right now. The one thing I did forget that wasn't listed on my reports was the fact that there were actually two masses showing on the mammogram.  My bs showed me the pics.  I'm assuming the 8.5 cm is the total size of both masses.  Does that make sense or am I jumping at anything to make me feel better?  Would it make a difference anyway?  The other thing is, the spots that showed up on my bone scan - I've already been diagnosed with the beginnings of arthritis - and from what I've read, arthritis "glows" in a CAT and bone scan.  Could it just be arthritis in my back or again am I jumping at straws?  I've actually had back problems for years. I also read they saw a small area of concern on a lung but I had pneumonia a couple years ago.

    Peggy - thanks for thinking of me this morning.  Even with the drugs in me, I only slept for a couple hours and had to get up and go to work UGH.  My mind is still all over the place.  I did take Monday off for a mental health day though.

    Thanks to all for the explanations.  Marsha I totally agree, shrinking all of this would be nice but I want it gone too.  After reading about ILC and learning it mirrors itself, I would like a bi-lateral with recon later.  Just want to heal and see how things go.  I'm sure I will miss the "girls" but they served their purpose and I'm okay with that decision.

    I really want to be hopeful but every time I am it feels like I get kicked in the stomach with bad results.

    Hugs to all,

    Michele

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    Michelle, just wanted to pop in here this morning to let you know someone is thinking of you and sending you all the positive vibes I can muster up.  A big hug too.  And yes, you will miss the "girls" but I try to get over that by thinking they really turned into "b*tches" on me.  LOL  Not friends I wanted to hang out with any more.  Did I make you at least chuckle??  Marsha

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  • jancie
    jancie Member Posts: 2,631
    edited January 2009

    Marsha, I don't know if you made Michelle chuckle or not but I am sitting here laughing my arse off at your comment of your boobies turning into biatches!

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited January 2009

    my dx was june 2004 ( i had a clean mammo a month before surgery, but showed on ultrasound)

    tumor section that was removed in lumpectomy was over 7 cm .... follow on mast had plenty more in it multifocal ... ER+, PR- and HER2- ... 1/4 nodes ....

    hugs and take a deeeeep breath ......

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  • michele54
    michele54 Member Posts: 152
    edited February 2009

    Marsha, OMG yes I am chuckling.  The biatches definitely have to go and I'm okay with that.

    Losing the girls isn't as upsetting to me as the spots that showed up on my scans.  Did any of you go without reconstruction?  I know I'm only 55 but for some reason I'm not overly concerned about having them redone.  Figured they aren't mine - they have no sensation - and the healing process will be a lot faster without the expanders, which totally freak me out by the way. 

    Thanks for all the hugs - they feel great and keep me from screaming. Deep breaths will come eventually I hope.

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited February 2009
    by the time i had my single mast i too felt like it wasn't "my" boob anymore it was cancer's and it needed to be gone !!! i haven't recon'd - keep one boob in the dresser drawer at night Tongue out
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  • marshakb
    marshakb Member Posts: 1,664
    edited February 2009

    Michele, I had both removed and no recon.  The bad boob removed at time of dx and the supposed good breast removed after all treatment (8 months later).  This is just my opinion, but i HATED having a uni-boob.  I couldn't even run to the store for milk without having to "even" myself up, so just didn't like the single.  Alot of people are perfectly fine with having one.  Very individual choice.  About the recon, I am a small person so it is not as noticable on me.  I do have a pair of foobies but only wear them if I want to wear a snug top for dress up.  I live in Florida and it is hot, hot, hot.  Now for a swimsuit, since those are always snug, I found some gels at Walmart that people use to make themselves a size bigger.  I use those in my swimsuit just to give me some curve in the top.  Makes me look like an A cup.  Just make sure you use a swimsuit top with a pocket in it.  Can you imagine having your "boob" float to the top?  EGADS!  That suggestion came via LauraGTO, Thanks Laura.

    OK, then, I did my good deed for the day if you got a chuckle!!  Marsha

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  • suzfive
    suzfive Member Posts: 456
    edited February 2009

    Hi Michele,

    I just saw this. I too am an ILCer three years out in December. I had both breasts removed - like Marsha one initially and then the other after I finished chemo ER+ PR+ Her2Neu -, 5+/21. On Arimidex for 2-1/2 years. The "good" breast did have a focus of LCIS (pre-cancer). No recon either. Thought I might do it later but not so sure anymore if I want to undergo more surgery. Also - so far - even after having 21 lymph nodes removed - no problems with lymphedema so don't want to upset that apple cart. Even though I live in the frozen tundra of Wisconsin, I rarely ever wear my "foobs". No one really notices and I feel much more comfy. After all I went through - comfy is SO important to me. I do wear them when I go out someplace dressed up and no one notices that they just saw me the day before without.

    About the spots on your scans - I would ask for a PET/CT as I think someone else may have mentioned. Once you have a diagnosis of BC, radiologists tend to be extra cautious and see everything as mets until proven otherwise. They do not want something to be overlooked and then have it come back later to bite them.

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  • michele54
    michele54 Member Posts: 152
    edited February 2009

    Yeah, after reading posts on here and knowing that ILC usually mirrors itself - I've definitely decided to go for the bilateral.  Going flat doesn't bother me at all.  Don't want to go though this nightmare again and I figure if the cancer is out of my body it can't hurt me plus being lopsided sounds like a pain.  From what I understand chemo is hard on your teeth too so I just can't imagine having my boob in a drawer and my teeth in a cup lol.

    I spent some of last evening with my reports and the internet looking up what they meant.  Now that I've reread them and really paid attention to what they said instead of hearing the words of my bs, I have some questions and hope you all can help.  I don't mean to be a nudge but it seems to me like you learn more when you've been though it.

    1 - Bone scan - There is a focus of increased radiotracer uptake in the region of the T9/T10 vertebral bodies which correlates with CT scan and is consistant with osseous metastases.  The CT scan agrees with the bone scan but also says there is no evidence of a lytic or blastic lesion.  From what I read on the internet, don't you really need one to have the other?    It also said there are foci of abnormal uptake in the c-spine, knees and ankles that are typical of degenerative changes.   How can they tell the difference between degenerative changes and cancer especially since I do have arthritis and have had minor back problems for years?  The CT scan also said "there are no destructive lesions in the visualized bones but there is mild degenerative changes of the lumbar spine" but the bone scan said they noticed increased radiotraces uptake in the left pedical of the lumbar spine.   Don't they contradict each other?

    2 - CT scan - non specific small periheral parenchymal vs pleural nodules.  In the setting of known breast carcinoma, consider reassessment in three months.   I was a smoker for many many years but quit 20 years ago plus i had pnemonia two years ago - things I read said these cause spots in the lung.

    3 - CT scan - There are no enlarged axillary (breast), hilar or mediastinal (lung) lymph nodes.   This is a good thing right?  I thought the lymph lodes had to be affected if cancer travelled.

    They also said my urinary bladder and ovaries are "grossly normal" - hey, should I be insulted lol?

    Lastly, again from reading, ILC doesn't usually spread as quickly as other breast cancers.  Wouldn't it first go to the lymph nodes, ovaries, and other breast?  I know I may be jumping at straws but the facts of ILC don't really agree with the tests.  All this is giving me a headache.

    Hope everyone is having a good Sunday.  Anyone watching the Superbowl later?

    Hugs, Michele

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  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited February 2009

    Michelle, I am just like you.... or you are just like me!

    I had a 14.9 cm tumour just sticking its head through the chest wall.  I was diagnosed Dec 20/05.  I met the surgeon Dec 27.  Had surgery Jan 11/06.  18 out of 18 lymph nodes tested positive.  Around January 25, found out I had spinal mets, liver mets and lung mets.  Learned all abou the respiratory system.  Pleural Effusions, Chest Tubes, pain, pain pain.   The hospital pulled out the port because it was infected.  They didnt replace it as I was getting bone meds and they did that with veins.  Well they finally found one that they hadnt bashed up..... so I got another port.  Are we twins or what?

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  • michele54
    michele54 Member Posts: 152
    edited February 2009

    Okay now I am freaking out and can't stop crying.  Dreamwriter I am sorry you are going through this I'm not sure I can.  I've always been a very active person and can't fathom the idea of not getting out there and doing my thing.  I really was hoping for some encouraging words because I thought my test results still had a chance of not being that bad.  My bs said my tumor was a little over 8 cm but is it really 14 cm?  Also I thought the reports said none of my lymph nodes showed any thing.  I know they can't really tell until after surgery but did I read something wrong?  Also, the things I read on the Internet said there were many other reasons for abnormalities in the results like arthritis and smoking.  Was I really kidding myself that much? 

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  • JudyO
    JudyO Member Posts: 225
    edited March 2009

    Michele54, I am sending positive wishes your way. I can see in your posts that your mind is all over the place....been there myself. I think the best for you to do is to sit back and do some relaxing. I know this is hard to do but try. I think the best for you is to wait until you go over all of this with your doctors. Once you have surgery you will know more too. If you look over the cases on this sight you will see that nothing is cast in concrete. As far as the lymph nodes go...look at my case, 2.2 cm low grade has 7 postitive nodes....I have seen large tumors like yours have none...and you know what they have a better prognosis than mine.

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