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Large tumour survivors

LM070917
LM070917 Member Posts: 68
edited February 2020 in Stage III Breast Cancer

Hey ladies,

Just wondering how many BC survivors have had large tumours (5cm+) and how they are doing years out of diagnosis?

I was diagnosed with an 8cm tumour last sept at 34 years old. The size freaked me out, I couldn't believe how big it was. It's always been a worry, so it would be really nice to hear from others.

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Comments

  • denise-g
    denise-g Member Posts: 352
    edited June 2016

    Hi - large tumors freak one out - absolutely. And at your young age - I am so sorry you had to deal with all of this.

    I had a 6 cm tumor with 9 positive nodes - ER+ PR+ and Her2+ I had a heart attack during chemo and had to stop Herceptin after 3 months because of permanent heart valve damage.

    BUT I will be FIVE YEARS OUT in 4 months (who is counting?) and doing GREAT!!

    I write a breast cancer blog and hear from survivors with large tumors quite often who are many, many years out!! When I get into that thinking about how large my tumor was, I keep reminding myself "Yes, but it is no longer there!"

    Sending hope, courage, encouragement, and strength as you continue to live and thrive!!

  • shelly56
    shelly56 Member Posts: 142
    edited June 2016

    hi Lotta, I had 6.5 cm tumor that didnt show up on either mammo or PET. Had 4 pos nodes. That was over 7 years ago and I am doing fine. I couldn't help freaking out back then but now I see more and more good days...turn into years !!! Stay strong!


  • yatcomw
    yatcomw Member Posts: 53
    edited June 2016

    Mine was also 8cm.... with 17 nodes positive......but was never seen on sonogram or mammogram.....I am now 12 years out.....I know quite a few people doing well with large tumors....some 15 and 25 years out.

    Hang in there.....

    Jacqueline

  • ash123
    ash123 Member Posts: 44
    edited June 2016

    Mine was 5 cm and I am almost 18 months out, with no lymph node positive. Hang in there, good days will come.

  • Hammie28
    Hammie28 Member Posts: 29
    edited June 2016

    Hi Lotte! We are on a similar time table with similar diagnoses and similar ages (I'm 37). They originally thought my tumor was 5.5 cm. It didn't respond well to chemo but they did see that it lessened in intensity. When it was finally out after my mastectomy, the path report said it was actually 8 cm! (and I'm a small breasted a-cup!) But they also explained that there was a lot of DCIS mixed in with the IDC. How big was your tumor after chemo?

  • LibbyD
    LibbyD Member Posts: 6
    edited June 2016

    My tumor is 9 cm. Does it being large make a difference compared to small tumors? This is kind of freaking me out.

  • LM070917
    LM070917 Member Posts: 68
    edited June 2016

    Thanks ladies, great to hear you all doing so well, gives me a lot of hope and I hope to report back on many years to come as you all have.

    Hey hammie, I had surgery before chemo, because they originally thought the tumour was under 5cm, but it turned out to be bigger than expected. They did chemo as an insurance policy. Do you have children? I don't, but hope to in the future. Doc says I must wait the full 5 years due to my high risk. I'll be 40 then

    Hey Libby, it just means that there are more cancer cells in your body as a result of the larger size, compared to a smaller tumour. They've had more time to multiple I suppose.

  • rebzamy
    rebzamy Member Posts: 49
    edited June 2016

    Hi ladies,

    Mine was about 5cm and HER2+ and very fast growing, several lymph nodes affected and one was huge under my arm - felt like the size of an egg yolk. That was 9 years ago now :)

  • lucca06
    lucca06 Member Posts: 17
    edited June 2016

    Hi mine was 12cm, a big spiders web of ILC, DCIS and LCIS with 9 nodes positive after chemo. Diagnosed 5 years ago last March and doing really well, very healthy and happy. Finding out the size is a scary one but time helps. Good luck with your treatment.

  • beth1965
    beth1965 Member Posts: 203
    edited June 2016

    Hi I had over 9cm tumor and a 1 cm tumor and 2 cm tumor in my nodes and 17 cancerous tumors I did not do well first 2 years but am good now *** I am 4 years strong now *** that's how I say it

  • Hammie28
    Hammie28 Member Posts: 29
    edited July 2016

    Hey Lotte! Yes I have one child. After my diagnosis I decided I was ok with not having any more so I went ahead with the ovary removal as soon as I finished radiation. I feel like there are a lot of us young women with large tumors. I had never had a mammogram before the day I was diagnosed.

  • TectonicShift
    TectonicShift Member Posts: 102
    edited July 2020

    .

  • ash123
    ash123 Member Posts: 44
    edited July 2016

    I had a 5 cm tumor and no lymph node involved. I had three small lymph nodes which came back negative before chemotherapy . my sentinel lymph node was negative after chemotherapy too.


  • Artista928
    Artista928 Member Posts: 1,458
    edited July 2016

    MRI showed 4cm tumour. BS went in and pulled out 3 more cm that was hiding from exams. It was dumbbell shaped so it was 1 tumour and not 2. 1 SN with micromets. Just finished rads and am recovering from the burns from that. Started Tamox last week as I already have joint issues and so AI would do me in. Kind of bummed about not getting the ideal tx for my situ (I'm almost 52) but I can't become crippled either. Such a wait and see and so individual on how each of us does/will do. Some you think no way for mets and it comes back while others are smoking/drinking/bad diet and live full lives. We can just do our best and try not to stress about the what may happen.

  • Lolis
    Lolis Member Posts: 294
    edited July 2016

    Hi Lotte,

    I had 5cm+ IDC and 5cm+ DCI with 8 positive nodes ER/PR+. I was 33 at Dx. I am two years out and doing well. The first anniversary was a bit tough emotionally but now life is back to "normal".

    One day at a time.

    Hugs.

    Lola

  • weesa
    weesa Member Posts: 78
    edited July 2016

    I had a tumor that was probably 6 cm to 8 cm. It was hacked up twice with lumpectomies without clean margins (the surgeon was operating blind since it did not show up on a mammogram or sonogram) and then finally a mastectomy. That is why I am not sure of the size but my onc thinks it was more towards the 8cm end.

    I had five positive nodes, two of which had 2 cm cancers surrounding them. Worst yet, my ki-67 was very high.75%. My cancer was Luminal B rather than the more common Luminal A for hormone receptive cancer. Luminal B has a worse prognosis than Luminal A.

    My onc told my husband he hoped to get me in remission for three years. I am looking forward to posting on the 15 years and out in another year....I am just too damn ornery and irascible to let it grow back. I don't do any supplements or any treatment of any sort and haven't since I wrapped up active treatment in 2003. I do pound down a few Margueritas on occasion. I think their bilious green color is probably a powerful anticarcinogenic.

    Love and admiration to all walking down this path with me, Weesa

  • Valstim52
    Valstim52 Member Posts: 833
    edited July 2016

    Weesa, I love it!!! Thanks so much for giving us hope...just starting on this journey.


  • wam
    wam Member Posts: 98
    edited July 2016

    Weesa! Thank you for sharing your wonderful story! I was lleft with radiation as my last hope. There werent clear margins around my tumors. The radiologist told me he was the clean up man and that similar girls are out there living life! It is so good to see you!

  • wintersocks
    wintersocks Member Posts: 434
    edited December 2016

    I'm having a big wobble today about recurrence, for some reason today.

    I think it's the whole stress of Christmas, too.

    but really a 6cm tumour? that feels really huge even nearly 5 years post...

    What to do Sad

  • elainetherese
    elainetherese Member Posts: 1,610
    edited December 2016

    I think we have to get beyond the belief that "size matters" a great deal. The attributes of each tumor are different. As Atul Gawande notes, doctors uncover lots of "turtles" (slow growing tumors that aren't going anywhere) in addition to "rabbits" (rapidly dividing tumors that are likely to cause mets). The problem is that doctors can't always tell the difference between turtles and rabbits. So, they take both out. You can have a small "rabbit" tumor and develop mets; you can have a large "turtle," and be freaked out by its size, but maybe it wasn't as dangerous as originally thought.

    By the way, my tumor was over 5 cm, HER2+, and was Grade 3. We think it was a rabbit, but who knows?

  • yatcomw
    yatcomw Member Posts: 53
    edited December 2016

    wintersocks......getting to five years is huge.....largest chance of reoccurrence is within the first three years. I will never forget my first Christmas after cancer....it is a big deal in my house....and I wondered if my husband could do it without me if I wasn't here.....well this year will be my 13th since diagnosis. I feel incredibly blessed after having an 8cm tumor with at least 17 nodes.

    Know there are many of us out here in the same boat.....many more years out.......life goes on as we had hoped (& prayed) it would.

    Happy Holidays....

    Jacqueline

  • wintersocks
    wintersocks Member Posts: 434
    edited December 2016

    Dear Jacqueline and ElaineTherese,

    The turtles and rabbit analogy is very useful.. Thanks for that. I just sometimes think 'wow', it was such a whopper compared to others who talk about 'pea sized lumps' - I guess because I knew it was there before I did something about it makes me feel bad. I know I am at high risk for chest wall recurrence and cannot believe I have not yet..

    Jacqueline, that is amazing you are so far along and it's great to hear you are doing so well! I am so pleased to hear this for you and your family, that you remain well. I think Christmas has a way of stirring up a lot of 'cancer emotions'.

    I am not quite 5 years but will be in August next year.

    Thanks, and Happy Holidays to you both.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited December 2016

    Mine was He..u...GE! It was described as hockey puck size invading chest wall and smaller ones found also. 12 years out and I'm still ticking!

    Dance like no ones watching!

  • flannelette2
    flannelette2 Member Posts: 11
    edited December 2016

    The rabbits & turtles is a good analogy. I had a whopper - 10 cm, felt like I'd won the award for biggest of the year, surgeon even went back to previous years' mammos to see if someone had slipped up, and on top of that, my paperwork had been flubbed and I'd waited 3months after my mammogram for biopsy.

    Just before surgery I looked at my surgeon and said - your'e concerned about metastasis - and he said yes. 7 am next morning he comes to my room & says he pulled out a big mess of what looked like IDC but lots of DCIS too - I guess a good sign, or he wouldn't have come by.

    I had no lymph node involvement, clean margins, no vascular involvement, yet had the worst mitotic rate, 9 out of 9 on the Nottingham scale. whenever i asked my br surgeon, on my follow-ups, he used to say of my tumour "it wasn't the travellin' kind". Each is unique, teensy ones can metastasize, huge ones, even fast -growing ones like mine, might go nowhere.

    So 8 years out.......and clearly size does not necessarily mean a thing.



  • Elizabeth1959
    Elizabeth1959 Member Posts: 78
    edited December 2016

    I unfortunately had the largest tumor that I have ever heard of, 16.5 cm IDC with one positive lymph node. The pathology showed grade 2 with extensive lympho-vascular invasion. Our of curiosity, my oncologist ordered an oncotype test which came back low. Never the less, I still had chemo in addition to mastectomy and rads. From the beginning, my oncologist called it an indolent tumor - biologically well behaved. I figure my biggest risk remains late recurrence. I will remain on letrezol for 10 years and probably indefinitely. When am I out of the woods?. I can't imagine.

    I work full time. Celebrated the birth of my first grandchild on 12/21 a beautiful girl. I try to think carefully about my life, balancing the present with an uncertain future.

    Elizabeth

  • Canceribilder
    Canceribilder Member Posts: 3
    edited October 2018

    Hi, my tumour was 10 x11 cm when I found it between my mammogram screenings. It's been one year now. I was 51 years then. I never had children, never breastfeed and always had a BMI 30-35 (parameters that may cause breast cancer)

    • I was diagnosed in November 2016
    • I had 1 lymph node with cancer out of 17 removed
    • I had mastectomy
    • I got lymphoma 8 months after radiation in my arm, hand, back and chest
    • During my chemotherapy I developed Sarcoidosis and they thought that my cancer was spread to my lymph nodes around my 💔
    • I developed PTSD
    • I have to take Tamoxifen for 10 years and those pills 💊 has destroyed my life (for the moment

    I'm very worried about the size of my tumour. First I just was relieved to survive, one year later I understand more how lucky I was. A lot of questions a raise 🙁

    Helena



  • Canceribilder
    Canceribilder Member Posts: 3
    edited October 2018

    Heart

  • moderators
    moderators Posts: 6,956
    edited October 2018

    Canceribilder, welcome to our community, and thank you for sharing your story. Wow, you've been through quite a bit!! This thread is older, but hopefully you've revived it. We're glad you found us.


    Medicating

  • monarch777
    monarch777 Member Posts: 338
    edited October 2018

    wow! Are you still in treatment or has your stage changed. Bless youHeart

  • wallan
    wallan Member Posts: 192
    edited October 2018

    Hi there:

    In 2004, I had a 7 cm tumor and two positive nodes. ER+ PR+ her2-

    I am here now 14 and half years later NED.

    wallan