Calling All with Tumors 6 cm +

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  • shells43
    shells43 Member Posts: 1,022
    edited October 2012

    Wow, Arlene, that is a lot to go through, but now you can have peace that there is no BC lurking! How wonderful!

  • ciabatta
    ciabatta Member Posts: 4
    edited November 2012

    My tumor is over 6.7cm but this was just realized after lumpectomy to remove what they thought was a 2cm tumor. I can't believe an MRI was not done before hand but didn't realize it was neccessary to see my mixed (apparently) lobular w/ductal. Now I am heading to the Dr. to see what Plan B is. I am scheduled for lots of scans and neo-adjunct chemo. How can this happen at a large reputable cancer institute?

  • Robyn_S
    Robyn_S Member Posts: 197
    edited November 2012

    Ciabatta that is not unusual with ILC- my excisional biopsy of a 2 cm mass uncovered an 8.9cm tumour which needed a further mastectomy which found another 1.6 cm tumour. ILC does not image well leading to its common calling as a sneaky cancer ! The multifocal LCIS in the other breast was not seen on MRI but found in pathology post mx.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    After ultra sound & biopsy they thought I had a 1.6 cm tumor with several tiny ones and 1 or 2 positive nodes. I ended up having 1 tumor that was 5.6 cm and 13 of 16 positive nodes. Only surgery tells the whole story, and I still need scans to know full extent.



  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012
  • shells43
    shells43 Member Posts: 1,022
    edited December 2012

    Hi Soteria, how are you doing now? looks like you have just started chemo. Please keep in touch as you have questions, we have been through it. Sorry to welcome you to the "Big Sisters" club! Take heart, that most of us have been down this road, have completed treatment and are doing well. My tumor was 9.7 x 9.4 x 4.7 cm, the size of a tangerine!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Hi Shells, thanks for asking. I had ct scans and bone scan a few weeks before chemo. I was supposed to be in the Herceptin trial to see if its as beneficial to her 2 neu- as it is to her 2 neu +.

    The scans were good except for a wicked bright area of the shoulder that showed more activity than my knee & spine where there is degenerative joint disease. So, I had an MRI which was supposed to take 25-30 minutes. My spine was killing me from that hard table, so when they pulled me out to do contrast dye and 30 more minutes of MRI, I begged off. Therefore, the radiologist would not commit to no mets. My BS, onc, researcher, and I all believe it is arthritis as I've had bursitis in that shoulder over the years, but without the radiologists word I can't be involved in the trial. I'm ok with that.



    I had minimal SEs with AC. I'm so thankful for that.



    I have my Fighting Boots on. I will beat this.



    Blessings

    Paula

  • Ossa
    Ossa Member Posts: 919
    edited December 2012

    soteria.. welcome here... love your additude...yes you can beat this just like the rest of us will beat this... I am one year cancer free. whop whop.. recently had revision surgery, need to have another fatgrafing done in six months as my last one failed,but PS is not giving up on me..

  • liv-
    liv- Member Posts: 521
    edited December 2012

    interesting thread.

    lol...not a thread that i ever wanted to be part of but im it, .....10cm 17/24 nodes trip neg...jackpot!

    doing ok, initial chemo was a bit tough on the mouth and taste buds, mastectomy much easier than anticipated, rads finished, new chemo's xeloda for 2 months and today started navelbine as had mets to chest nodes found through blood clot ct scan and held off on navelbine until rads finished.

    my cancer grew before my eyes, could feel it, started 2  cm.

    was getting disheartened with my onc at that time as would not listen to me, cancer became chemo resistant last 2 treatments, straight after mastectomy switched onc's and now have a great dr - patient relationship and  must say for me it was so important to have someone that i felt was batting for me., not against me.

    so for now its all ok and getting on with it.

    x

  • shells43
    shells43 Member Posts: 1,022
    edited December 2012

    G'day Liv-

    I have a friend in Perth, FYI. Wow, love your attitude as well. Glad you found an onc you can deal with! That really does make a big difference. Your post caught my eye for another reason, I could also feel my cancer growing, especially after the biopsy. It changed daily. I was SO relieved to have the MX and get it OUT! I agree the MX was not as bad as I had imagined, bad enough though. I'm almost 3 years out and just starting to think about reconstruction now, getting "on with it" as you said.

    Best of wishes and happy holidays!

  • liv-
    liv- Member Posts: 521
    edited December 2012

    hi shells yes mine was growing so quickly when i was laying on my side within a week the pressure of the cancer  was almost rubbing against my other non cancerous breast.

    me too was so relieved to get the pip off..

    i actually went into my breast surgeon and demanded (in a nice way, he was really good, it was the onc that i had no faith in) that they do it that day, luckily he agreed and within 24 hours it was off.  woke up scared to look but once i did was pleasantly surprised because i had pretty large pec muscles as had done lots of weight training, looking down it looked like a tiny very tight little boob.  no pain at all, only the drips were a hassle. next day i was home.

    im hoping if all goes well next year to have reconstruction.

    great hearing you are doing ok and getting on with life as yr signature shows and bet your looking forward to getting a new boobie too.

    take care

    x

  • EmmaL
    EmmaL Member Posts: 28
    edited January 2013

    i am linked to come here...

    after the biopsy and other tests, i was told it was 3.5cm (quote:"... a small one...") so i had my surgery after i was dignosed. however, after that, the pathological report says the tumor is 7cm.

    i am waiting for a CT scan. Because the report also shows that 17 out of 22 of my lymp nodes are affected they want to see whether (or maybe which) other part my body is spread.

    i assume this will be my second 'home' and i will update my situation very soon...

    PS, so touching ... many of you not only post your own exprences but also share, help, encourage, bless ... so far, i havent told my parents the bad news. i cant even finish a sentence without a tissue!

  • Ossa
    Ossa Member Posts: 919
    edited January 2013

    EmmaL.. Welcome here.. sorry you have to be here, but glad you found us.. My tumour was 7x6x1.5 cm and I had three nodes "involved" as I had Chemo first we will never know if I had cancer in the nodes or if it was pre cancer cell changes.. My pat says seven benign nodes taken, but another part says three nodes with involvement.. whatever that means.. I am 1 year 8 months from diagnosis, and one year 14 months PFC  Done my recon, even though I will have another attempt at fatgrafting in about 5 months.. I had fatgrafting done in november, but it failed.. Got a new nipple though and it looks good.. now waiting for areola tattoo once that is healed it is fatgrafting time.. My PS said the implant is like a cake, the fatgrafting is like the icing and the nipple is the decoration.. My cake and decorations look good.. Think my Icing was too "warm" 

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2013

    I love the baking analogies Ossa. : ) It's nice to see some new people have found this thread. I know that I was so shocked at the size of the tumor, I just wanted to talk to others who had that experience.

    So right before Christmas I did stage 2 of my diep flap and now I have nipples. The PS told me that I would be able to work the next day. He was very wrong. I worked the day after, but I did have quite a few co-workers tell me that it looked apparent that I was back too soon and I knew that I was, but felt like I had no choice with the job being contract work and I had already told them that my doctor thought I could be back the next day. He also got rid of the dog ears on the hips and did liposuction. I had bruises over 12" in diameter. Lipo is NO joke - I discovered. I had no idea how sore I would be from that. Tattoos will be next, but I belive he told me it would be six months from the last surgery before we do them.

    The new year brought me a new job. For the first time through this whole cancer treatment, I am done with contract work and into a full-time, permanant position. I am so excited about it and the growth prospects in that position. As I have been working on my master's degree in web design and new media, I will be able to immediately use the skills that I am picking up. 

  • ridergirl
    ridergirl Member Posts: 443
    edited January 2013

    J-Bug glad to hear that the new year is bringing you ssome new good things. congrats on the job....must be a relief to not be contract all the time and always looking for the next one.  Great that your education is paying off!

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    I could see changes in my breast and had some discomfort in the beginning. Then nipple inverted, dimpled skin and pain. 
    Initial tumor was over 5cm, lymph nodes inflated.
    Started neoadjuvent chemo = tumor and nodes shrunk in half at chemo#4/6 cycles.  Then #4 was delayed (platelet plummet), and between #4 and #5 chemo, a totally different mass emerged.  From pathology post op, that one was 9cm.
    Just had ctscan, waiting to hear results monday.

  • takingchanceschat
    takingchanceschat Member Posts: 3
    edited January 2013

    My tumour was 9.5 cms in total Surprised they told me 2 sential nodes, had isolated tumour cells.....hmmmm what is that? 0 lymph nodes removed

  • Ossa
    Ossa Member Posts: 919
    edited January 2013

    Jbug.. Glad to hear the new year is starting out good for you.. hope it gets better as the year progresses

  • liv-
    liv- Member Posts: 521
    edited January 2013

    who has had the most nodes removed?

    me 24 - 17 bad.

    x

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2013

    I only had two nodes removed on each side. I did my chemo first so they had already been treated and were showing no signs of cancer before biopsy.

  • Ossa
    Ossa Member Posts: 919
    edited January 2013

    I had seven nodes remove Three showed "involvement"  Had chemo first so no cancer cells found

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    I has 13 out of 16. I was freaked the day I got that news! Nothing shuts me up, but that news sure did.



    Paula

  • lago
    lago Member Posts: 17,186
    edited January 2013

    10 nodes on the left, 4 sentinel nodes on the right. No nodes invaded. LE on the left.

    BTW my total tumor size was 6.5 cm (IDC 5.5cm  + DCIS 1cm)

  • Rdrunner
    Rdrunner Member Posts: 309
    edited January 2013

    They thought it was 4cm ended up being 6cm and ended up having smaller tumours in there too. 4 nodes taken that looked suspcious on mri and ultrasound but came back negative. Waiting for onco type score to decide on chemo.

  • wintersocks
    wintersocks Member Posts: 922
    edited January 2013

    please ladies, I am too a 'big girl'. I so wish I had found this thread when I was dx (stll less than a year). I was utterly distraught and thought I was going to die in 6 months,

    I too don't talk about the size, I feel a lot of guilt for not dealing with things earlier than I did.

    I still find it really hard to talk about this, Anyway I am here all treatment done and planning on a Diep in August (if no recurrance)  

    I am pleased to feel less alone now. Thanks!

  • lago
    lago Member Posts: 17,186
    edited January 2013

    winterstocks do not blame yourself. I did all the right things. I got my mammos. Complained about a pain 4 years prior. Even my former gyno didn't feel the dense area 5 weeks before I noticed blood coming from my nipple the day before my yearly mammo. If the professionals, looking at mammos can't find a 6.5cm tumor in a barely 34B breast how the hell are we supposed to find it.

    These things can hide. In my case the dense tissue and posterior region location didn't help but I still feel the professionals should have seen this 1 year earlier especially since I had a scare 4 years prior in the same spot!

  • liv-
    liv- Member Posts: 521
    edited January 2013

    me too wintertocks misdiagnosed, not as long lago but for 4 months, started at 2cm, after mastectomy it was a huge 10cm.

    xx

  • victoriasecret
    victoriasecret Member Posts: 333
    edited January 2013

    I guess I can add my story as I am lurking the boards this am..don't come here very often.

    My ILC I believe  7.5 cm but I think it was mixed as well that was the largest mass..nipple involved dcis..the path report is somewhere I used to read and reread ..that does no good it is what it is and it's gone.

    I too also mammos every year follow up ultra sound . My breasts started to change when I was 26 thats when I had my first mammo ...thought I was going to die then always false alarms.My bra size 38 B-C . Yes I felt something but told dense breasts, fiber cystic. 2 years before diagnosis calcifications appeared ..still came back ...no abnormalities.

    When I first came on the boards in a panic my diagnosis was dcis...test by test they came to my final staging. I kept jumping boards.

    With all that said here I am 3.5 years out living life happy and try to keep it in the closet ...some days I let it out .

    much love n light

    Cheryl

  • wintersocks
    wintersocks Member Posts: 922
    edited January 2013

    Ladies,

    Thanks so much for your replies. It really does help knowing I am not alone with this whopping tumour.

    However, I did know there was something wrong, but took a time to get round to it because of other ongoing problems (some health, some other stuff). Now I just feel incredibly guilty that I seemed to ignore it. Mainly, because of my sons 18 and 15yrs.

    But, I had been at the breast clinic for years prior to this with lumps/bumps fibroadenomas and even a biopsy 6 years or so ago in the breast that was mx'd last year.

    I am worrying that I/we have a worse prognosis because of the large lump. My BS has told me she doesn't expect it to recurr.

    I realise I am still fairly new to this have only finished RADS in Nov.

    Cheryl - How nice to hear you are doing well.

    Hiya Liv from Perth  

    Iago - the dense tissue does seem to be a problem, this was my issue too  - If only they would MRI those of us with dense breasts.  

  • luckypenny
    luckypenny Member Posts: 150
    edited January 2013

    I agree that MRI is the gold standard.  However, I  2 ultrasounds, a diagnostic mammo and then MRI, and finally biopsy.   After the MRI, my bs was even less convinced that I had bc .  My tumor still didn't show on and imaging , not even MRI.  I had 9.5 cm area of involvement with 30% of that being dcis.    My wasn't ILC as surgeon expected, but rather IDC.  Oh and add to that 8 positive nodes out of 17.  2 of those 8 only had micromets which sort of provides me with some comfort.  I will take any hint of silver lining I can get.

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