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Anyone with 10 cm tumor?

flannelette
flannelette Member Posts: 398

I am able to ask this question now, almost 2 years after diagnosis.

My mammogram showed a 10 cm (6 inch) area of IDC. My paperwork got screwed up at my breast assessment centre, and my biopsy was not for 3 months! Surgery one month later. Before I went in to have the mast., my surgeon stood at the foot of my gurney, and I said to him "You are concerned about metastases". and he just said yes. Next morning he came to see me, said it was only about 4" of what looked like a bunch of DCIS mixed in with IDC. good news, I thought he'd come especially to tell me.

One month later, seeing him for the pathology report, sat there crying. In he bounces & says "margins clear, no lymph involvement (he took out 6) and no vascular involvement". yea! i jumped up & pumped my fist into the air each time.

The only bad part was i had (in Canada) a 9 out of 9 for bad cancer behaviour - ie quick division.

All this had happened in one year, since th last mammogram. He even looked at the old mmgm to see if there had been some mistake - but no, was not visiible.

2 years later - no local reoccurance. My surgical oncologist no longer needs to see me to check & says I can have reconstruction - (not).

Of course I do see the medical oncologist every 6 months.

maybe I do have metastses, but so far no symptoms, and i knock on wood each time I think Ihave none.

This is an enigma, and a mystery, and i thank my lucky stars every day. By the way, nobody, not the surgeon, - nobody - made me feel hopeless, except I kept thinking that by their silence Id won the booby prize(black humor is good)

Right after seeing the surgeon for the first time the nurse navigator came out with me and said "SOMEBODY has to tell you this isn't a death sentence"

I ponder all this, wondering what happened? it's a mystery to me. Maybe it's not so unusual?

Anyone here have this experience.? I did have the works - chemo, rads, arimidex.

My pic here is very old - I have long shaggy/half-spiked silver hair now, and am ridiculously optimistic. (But still do knock on wood, lest i disturb the tree spirits)

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Comments

  • thegoodfight
    thegoodfight Member Posts: 124
    edited April 2010

    souad,  You are an incredible woman with a contagious sense of humor and positive attitude.  Thanks for beginning my day with some sunshine.

    Caren

  • lexislove
    lexislove Member Posts: 277
    edited April 2010

    Souad,

    I think we talked before. I reached out to you because of your stats.

    I think we may be the only huge tumor no nodes girls. Actually, there is another she just hasn't posted in over a year.

    My tumor was 8 cm....so not too far off from yours. Grade 3...aggressive an plain ugly.

    I'm approaching my 3 yrs cancer free in September.

    I remember freaking out because of my tumor size. My onc told me this.....it isn't necessarily the size of the tumor it's how well you respond to the chemo and over all path report (clear nodes). There are teeny tiny tumors that are bad news.....and there are big old ones that are fat and lazy---like ours.

     I was misdiagnosed for 9 months. 9 months of "your too young, it's nothing to worry about." Well, one day my gut said something isn't right and demanded a mammogram. Mammo led to an ultrasound ect...ect. I was dignosed,port placed and starting chemo within 6 days (neo adjuvant).

    I get your feelings, there are days that I have to remind myself....that TODAY, I'm ok. I feel good...except for some aches and extra weight I'm trying to shake off, but I'm good.

  • thenewme
    thenewme Member Posts: 174
    edited April 2010

    Hi Souad,

    Mine was only (!) 5cm, but it was very aggressive and fast-growing too.   I was very small breasted to begin with, so I think the tumor was bigger than my breast -ugh!  I try to think of mine as more sticky/gooey than some, and so it all stuck together in one chunk instead of leaking cancer cells to float away and become mets!  I had no positive nodes either (one "suspicious" IM node, but couldn't be biopsied and so I prefer to consider it not positive!)

    Congrats on your 2 years and Lexislove on your 3-year mark!!!!!   Wooohooo!

  • flannelette
    flannelette Member Posts: 398
    edited April 2010

    Hi thegoodfight, lexisolove, and the new me - and thanks for your posts. Lexislove - I do remember seeing your posts - I haven't looked here in a long time.

    Looks like we are all class of 2007/8, no nodes, stage 2 B or not 2B - ie 2A! Lexislove I just zipped through some of your older posts & read your bit about the surgeon who said about 90% of these large tumors have gone to lymph? yikes. I never, ever asked, neither my stage nor any other question, till my path report and even then I would not let him tell me my stage. I didn't want to hear a single statistic, in case I latched onto it & went into depression, my more normal mode, in which case, game over. so only, much later, did I go on this site & find my own stage, which my onc later confirmed.

    when my path report came a month after surgery my same nurse navigator said "many women would have crumbled but you kicked cancers ASS!". Well, maybe all i did was go into total denial! Who -me? yes, I have a whopper, but - my Mom kicked cancer for 40 years, and my sis is still at it and doing great, and so **** am I.

    So i didn't mention the cabbage juice. I bought a heavy duty juicer  several months before my surgery, and juiced - ugh - straight cabbage, based on the fact it's loaded with indole-3-carbinol, which is a cancer-figher in reserach modes. Drank every day till my digestive system sort of melted and i had diarrhea for - oh, 6 weeks? clueless, ididn't know THIS was going to happen! I also took 2 Canadian supplements called Breast health and heart health - full of I3Cs and omega 3's etc based on advice of my old gynie who is into this stuff.

    Part of the mystery is - and i laugh - could the cancer cells not stand the onslaught and just gave up? i like to believe it was some combo of cabbage juice, total denial (or acceptance, I don't know which) and the luck of a good surgeon and good treatment and heaps of loving support. - or - perhpas - nothing at all do do with any of these, and a big fat but lazy tumour.

    Andyway, we're all here - and  good for us!  A toast, today, to us. and thanks for writing. 

  • thenewme
    thenewme Member Posts: 174
    edited April 2010

    Souad - you made  me laugh out loud thinking of the cancer cells screaming "uncle!!!   We give up - just stop with the cabbage juice!!!"  Too funny!  

    Sounds like you're doing great and keeping your sense of humor.

    A toast to you too, but make mine anything but cabbage juice, LOL!

  • pod1257
    pod1257 Member Posts: 8
    edited April 2010

    My mom had a fat and slow tumor of 7.2cm IDC, 29 yrs ago. No lymph involvement. she had a single mast, no other treatment, and is fine today at 86yrs old. The onc was right. You can have a tiny tumor that is very aggressive or a large one that is a gentle giant.

    Julie

  • pod1257
    pod1257 Member Posts: 8
    edited April 2010

    PS: I am a survivor as well. I had IDC 1.5cm, er/pr+. Chose biateral mst d/t family hx. Had a low oncotype of 10 and therefore doing anti-hormone therapy only. I am 4yrs out and so far, so good.

    I'm hoping I had a slow fat tumor too and will live 30+ more years, just like my mom. I am 52 now.

    A double toast to all of us. I know what you mean about the cabbage juice. - I had some collard green, tomato and cantaloupe juice, yesterday. - I could only get half down. - Just too grassy tasting.

    Julie

  • Lukerya
    Lukerya Member Posts: 1
    edited April 2010

    Hello, ladies. I am new, but I think I belong to your club. It is encouraging to read your stories in the beginning of the way and see how brave women fought it. I am from Canada, too.  I just had my (single) mast two weeks ago, and pathology is only done in part. Good news is that tumor is not as big as they said before the operation (14 cm). It is "only" 9. And large part of it is DCIS. Oh, and the nodes seem clear. Hormonal status is still unknown, maybe next week. IDC spots were smallish (about 4 mm) but there were 15 of them. I feel like industrial-size nursery. 'fraid there is no market for them, though.

    So, I am just hanging there, waiting for more news, trying to guess what to expect and what treatments there will likely to be. It is nice to know that I am not alone and that some of them walked quite further on this road. 

  • lexislove
    lexislove Member Posts: 277
    edited April 2010

    I never have asked for a copy of my path report. All I know was that I had clear margins, nodes clean and DCIS with residual tumor left (1.7cm x 1.7cm).

     I just put 2 and 2 together and figured out my stage from my stats.

    I think its great to have this thread.....I didn't come on to the boards untill I finished my treatment and I only saw 1 woman who was "like me". It was scary.....but as the time goes, someone else comes on and another comes on.

    I just wanted to be the one to say...that yes, my tumor was massive but I'm here and doing well. All my docs have told me that they expect me to be fine.

    Lukerya :

    Sorry that you had to come here....but you have a lot of support.  Glad you tumor was "only" 9cm...lol. I hate waiting for results too....soon you will be starting treatment and then getting your life back. Welcome.

    Souad: Ha! You make me laugh!

  • KittyDog
    KittyDog Member Posts: 656
    edited May 2010

    I am glad you are doing so well.  I can join your club.  My tumor was original 10 x 10cm. and we knew that one lymph node was involved.  I did 7 rounds of chemo first.  The tumor responded well to it but I got very sick from chemo and ended up in the hospital.  So they took my last chemo from me.  I then had a unilateral mastectomy.  The final report was that the tumor was 5cm, 1 0f 5 lymph nodes involved and good clean margins.  I don't know how long my tumor was there but the Dr. thought it was a very quick growing cancer.  I noticed a bulge last July and I couldn't find a lump.  I had no clue something was wrong until I went for my yearly mammogram in Nov.  I start Rad. May 17.  I hope I do as well as you have.  Thanks for some encouraging words.

  • flannelette
    flannelette Member Posts: 398
    edited May 2010

    Greetings Kittydog and Lukerya - and thanks for posting and letting us know about yourselves. I was at my onc's the other day, with my mystery question, and she just said they don't know why this happens - big tumours with no no spread, teensy ones with spread -

    I don't know how you feel about complementary medicines, but I do try to do things that might make a difference at cellular level where the battles go on - one book my dr suggested is Cooking with Foods that fight Cancer, and another I see here is Anti-cancer by David Servan-Schreiber, and there are some very active and informative threads on some discussion boards...

    I hope you do feel encouraged by posts from some of us "big" timers - and that you do well - that we all do well, and even better - that we'll thrive.

  • Jaim1123
    Jaim1123 Member Posts: 8
    edited July 2010

    Good morning,

     My mother (53 years old, I am 28) was diagnosed with BC about a week ago.  Her tumor is 5cm, multifocal, hormone receptor positve with one known node involved.  I am so thankful to have found this forum!  Hearing these stories have really put my mind at ease :)  It is reassuring to know that that women with a similar situation as my mother's are doing well! I am certainly less scared after spending some time browsing through the IDC discussion board.

    At this point we are awaiting the appointment with the oncologist to find out the course of treatment (appointment is July 27).  The waiting is for sure the worst!  I know we will all feel better once she starts treatment.  She has bone scans and abdomen scans lined up.  

     What was everyones course of treatment?  

  • flannelette
    flannelette Member Posts: 398
    edited July 2010

    Hi Jamie - I had a mastectomy, then chemo ( 6 rounds of FEC) then radiation. And now a year and a half into 5 yrs of Arimidex. Sorry it's late (for me) but I just noticed your post after nothing being here for a long time - so just wanted to say hi, and give you the short version before heading to bed. I wish your Mom all the best.....

  • hope2
    hope2 Member Posts: 12
    edited July 2010

    hi ladies,

    my tumour was over 8cm idc and no node envolvment, it encompassed my whole breast, the scans showed lymph node involvement and two seperate tumours but the pathology report came back with one large tumour that grew on the chest wall, it was a very agressive cancer and was on the move at the time of the modified radical macestomy. my tumour started on the lower inner quadrant so had to travel through my whole breast to get to the lymph nodes under my arm, i think that is what saved me.

    i had gone to the doc 16 months previous with the 1st lump just a month before my 34th bday, she did refer me to the breast clinic lump disappered but came back again a few days later (typical), then took five trips to the doc and 14 months more before a major abcess and infection in the breast speeded things up. all of mine was idc and was basal like in appearance, was over 99% trible negative. i did the avastin trial, 15 months out and flying it thank god.

    a good post to start as the large tumours esp with an agressive cancer are very worrying as it is a locally advanced breast cancer but all oncologists seem to say the same thing that it is lymph node status that is most important. when i got my histology report the nurses even hugged me and you would think the surgeon had won the lotto, she said you do not see many cases that are way better than expected. i had 22 nodes removed and all clear, 3 showed enlarged on the scans but must of been from infection.

  • flannelette
    flannelette Member Posts: 398
    edited July 2010

    Hi hope2 - I'm curious: what is the avastin trial? what is a histology report? (I don't think I've ever had one) You are the only person who has mentioned modified radical mastectomy - that's what I had too. is that different from just "mastectomy"? My mom had full radiacl mastectomy in 1951 removing a large part of muscles underarm, chest etc. but she exercised, hung up clothes on the line, did gardening & led a normal life. She was 44. No other treatment. she lived to 81. she had  had a lump under her arm for a while, which her first dr poo-pooed.

    Like you, the surgeon & the nurse & the intern & I were practically hugging each other at my path report. I'd been sitting there crying, the surgeon was going to be some time on his rounds, so he sent in an intern who flipped open my chart and then the smiles & laughing began  - then the surgeon (I'm in love with him) comes in & says "I hear you've been crying..why?... are you ok now?"  whatever he did, mx wise, I never had a moment of pain after - and I do mean I never had to take so much as one tyleno!.

    ps jamie - I happend to get an anesthetist who had been learning at a pain management clinic about post-mastectomy pain syndrome. He came bouncing out before the surgery & told me, and said, go for it (a 24 or maybe 12 - hour "pain block") and you'll be very happy you did. I'd never heard of it till this point! I guess it was some sort of upper chest epidural - I sat on the side of the operating table while it felt like he was drilling a corkscrew -with no pain at all - into my back opposite the breast to be removed.He said some people won't opt for it as they don't want to have time to look around the operating room. By then, I was slightly high from whatever was in the IV and having a fine time and i think I would have done the surgery myself!  then went under anaesthetic.. Woke up happy as a clam (drugs can be wonderful), after recovery room went to my room, wolfed down supper, lay reading the newspapers after  my H had gone. At 10 pm the nurse asked if I'd like a morphne injection in case the pain block wore off in the night & I said sure, but in the morning they just disconnected me from the IV and by noon I went home. And not a single pain. There are many women here who have devastating pain long after mx - and I think if you can find an anesthetist that does the epidural (and not all have learned) it is the very best way to go.

  • hope2
    hope2 Member Posts: 12
    edited July 2010

    a histology report is the area of biology the examines cells under a microscope and then writes a report on it, the same as a pathology report. i have heard so many terms at this stage i nearly feel medically trained Smile

    Avastin is a sister drug of hercepton it is on trial for trible negative cancers as after chemo and rads there is nothing to reduce the chances of it not recurring and trible negative is normally a very agressive cancer but not always, avastin is currently approved for use in advanced cancer but not treatable cancers. i am on the trial to see how well it is tolerated with chemo and also to see if the outcomes for stage 2 and 3 cancers are improved  with its use if they are her2 negative.

    hormone receptive cancers are put on supressents or offered an operation to remove their ovaries but at present there is nothing further for trible negatives. modified radical just means that it is between the radical and straight mascetomy, the difference is that they take as many nodes as they can find and also may take some muscle and other tissue, they also took extra skin to get clearance.

    take care 

  • shells43
    shells43 Member Posts: 499
    edited August 2010

    Hey,

    Just checking in with the BIG girls club. How is everyone? I just emerged from my chemo week, feelin good now. Hope you all are too!

    I think we need T-shirts or something for this booby prize!

  • onward
    onward Member Posts: 229
    edited August 2010

    Souad, I didnt have a 10 cm, but I did have a 9.2cm removed during my Bilatteral Mastectomy. I had both invasive ductal and lobular, do I get to join your club?

  • maryannecb
    maryannecb Member Posts: 74
    edited August 2010

    I am a big girl too...9cm..all IDC...2/14 positive nodes..did the works for treatment..had recon..living exactly as before..with a teensy cloud over my head.

    I really did not hold much hope...but here I happily am.

  • maryannecb
    maryannecb Member Posts: 74
    edited August 2010

    I am a big girl too...9cm..all IDC...2/14 positive nodes..did the works for treatment..had recon..living exactly as before..with a teensy cloud over my head.

    I really did not hold much hope...but here I happily am.

  • lago
    lago Member Posts: 11,653
    edited August 2010

    So far I'm 7cm but in a small A cup boob. I too am in the aggressive Grade 3, triple +. I'll find out in a week how big this sucker really is. So far they it doesn't seem to be in my nodes but they won't know till they go in. I'm having level I removed in left breast and sentinel node biopsy in suspicious right breast. (BMX).

    Granted who knows how big this sucker is now. My mammogram/ultra sound was back in mid June.

    I'll keep you posted on size. I'm sorry we are all here but glad to find out that there are others with big tumors… and seem to be doing well.

    BTW the radiologist who did my biopsy said his nieghbor had a 10cm tumor and has been NED for 4-5 years!

  • maryannecb
    maryannecb Member Posts: 74
    edited August 2010

    Look Lago...still NED..just hit 5 years..even had 2 positive nodes. :))  It happens.

  • KittyDog
    KittyDog Member Posts: 656
    edited August 2010

    Thanks for posting Mary.  I hope I have the same outlook. I need that bright thought today!

  • lago
    lago Member Posts: 11,653
    edited August 2010
    Thanks Mary. BTW I have another idea. If we don't do a big girls tee how about a customized big girls snuggy Tongue out (They make snuggies for everyone else).
  • pupfoster1
    pupfoster1 Member Posts: 176
    edited August 2010

    Hi Girls and thanks Lago for giving me this link.  I guess I'm a member of the Big Girls Club too as my largest tumor was 6.5cm.  Unfortunately I did have quite a bit of node involvement---boo!   Had a propholatic bilateral mx November of 09, then chemo and rads.  Now on Tamoxifen for at least 5 years, and so far NED!  I keep praying the tx has done it's job especially because of the high node count.  And mine wasn't detected on my previous mammos either---I had large dense breasts, which you all have probably heard before, it's like finding a polar bear in a snow storm.

    Hope to hear lots more good news from you ladies.  Take care,

    Sharon

  • lago
    lago Member Posts: 11,653
    edited September 2010

    OK my update. Tumor is only 5.5cm. Still big for a (now former) A cup. Nodes all negative. I'm still not sure if this is small enought to get me out of radiation. I really hope it is.

  • KittyDog
    KittyDog Member Posts: 656
    edited September 2010

    My tumor shrank to 5 cm after chemo.  I still had to do 34 rounds of radiation after my MX.  Wishing you no rads. luck.

  • Joviangeldeb
    Joviangeldeb Member Posts: 18
    edited September 2010

    Hi.  I had a 6.5 cm mass in my left breast and had one out of 3 lymph nodes positive. Grade 2, er/pr positive and her2 negative.  My pathology report stated I had local metastisis to one lymph node which broke out of its capsule and into the surrounding fatty tissue.  Am durrently 2 years and 5 months from my last chemo and no evidence of disease.  congratulations on your 2 years also.

    take care,

    Deb 

  • Joviangeldeb
    Joviangeldeb Member Posts: 18
    edited September 2010

    Hi.  I had a 6.5 cm mass in my left breast and had one out of 3 lymph nodes positive. Grade 2, er/pr positive and her2 negative.  My pathology report stated I had local metastisis to one lymph node which broke out of its capsule and into the surrounding fatty tissue.  Am durrently 2 years and 5 months from my last chemo and no evidence of disease.  congratulations on your 2 years also.

    take care,

    Deb 

  • Sunny123
    Sunny123 Member Posts: 1
    edited September 2010

    Hi ladies,

    It is so great to hear you are doing so well,I was just diagnosed and I have been told 10cm by one doctor and 12 cm by another.  It freaks me out a little every time they mention the SIZE it makes me feel as it they have not seen it that big before. So it is encouraging to know im not alone and you are doing so well. Can you tell me if you all did chemo first then surgery then rads.

    thanks

    Sunny