Found out primary tumor is 9 cm

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Magnolia-mom
Magnolia-mom Member Posts: 101
edited December 2019 in Stage III Breast Cancer

They clinically staged me based on my 3 cm tumor. I just found out the size of my tumor that was too hard for them to see precisely with mammogram. It is close to chest wall, but I may have enough fatty tissue separating it. I also have 1 swollen auxiliary lymph node that tested positive for cancer. Will know more after surgery, but will never know for sure the number because of doing chemo first.

I'm in chemo now- 4th round of Taxol after AC.

Anyone else with this size tumor? Outcome seems grim and I'm not feeling very hopeful anymore.

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  • NancyD
    NancyD Member Posts: 3,562
    edited May 2018

    Magnolia Mom, my tumor was rather large at first. I think it measured 6cm on the PET scan. Neoadjuvant chemo shrank it in half.

    My biopsy also said one cancerous lymph node, but after surgery it turned into four. However Grade 2 is not the most wild and crazy cancer there is, and your hormone status makes you a candidate for one of the aromatase inhibitors that are keeping many women alive (including me!). Here it is, ten years later, and I've yet to have a recurrence. I'm still taking anastrazole (brand name Arimidex) daily.

    Don't lose hope!

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    My oncologist told me survival rate for stage 3 is 60-85%. I was hoping to be closer to the 85%, but looks like I'm closer to a coin flip.

    My tumor was measured after AC. So, who knows the size before.

    Thank you for reaching out Nancy. I'm so happy to hear you are doing so well. And yes, I think they will put me on Tamxifon. I'm premenopausal.

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  • star2017
    star2017 Member Posts: 827
    edited May 2018

    mine was identified as 8cm from the pathology results after the mastectomy. I’ve done chemo. Moving on to radiation soon

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  • DancingElizabeth
    DancingElizabeth Member Posts: 415
    edited May 2018

    Mine was definitely over 6 cm. But, Grade 3!!! Positive margins - too. 3 lymph nodes involved. One with extra-capsular extension (bursting with cancer).

    I too remember thinking - this is it - there is no hope.

    There will be a grieving process - for the you - that you used to know. Its overwhelming and a lot to get used to, and I don't think I ever really got used to knowing that's what I had.

    But, it gets easier...and there is hope...((((hugs))))

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Star2017- It sounds like we are in similar stages of treatment. Hugs to you as you navigate this with a new babe. It is encouraging to see you only had 4 positive nodes. Thank you for responding- it helps to not feel alone with this enormous tumor.

    DancingElizabeth- I remember your name from my anxiety post. It is just always something with me right now. I jump from crisis to crisis. Thank you for responding again and for the hugs and hope. Grade 3 is scary. I'm so happy to hear you are so are 2 years out!! I'm hoping for only 3 lymph nodes involved. I was just resigning myself to the IIIa diagnosis, when I realized I may actually be IIIb or IIIc. I won't know more until after surgery and never really know what was there in the beginning.

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  • star2017
    star2017 Member Posts: 827
    edited May 2018

    Magnolia Mom, as horrible as it is to know other people are going through similar things, I agree it helps to know you're not alone. It makes me feel the prognosis is better, knowing that this is something doctors deal with and treat.

    I was shocked too when I read the size of my tumor. It actually took me months to process. It was not something I really understood when I first got the pathology report, and I was so busy with chemo and life that I just didn't dwell on it. Now I've had a chance to go back over and try to understand my reports, and it is bizarre to think something so large was growing inside me.

    We're throwing everything at this cancer. I hope it means I'll be around for a while, to share in my children's lives.


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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Star2017- I have young children too. My youngest is 3. Being diagnosed so early in their lives is so hard. I want to watch them grow up and then I want more!! The uncertainty of whether or not I will be alive in 5 to 10 years is heartbreaking. I wish none of us had to go through this. Hugs to you- we are doing all we can

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited May 2018

    Magnolia-Mom....

    I was where you are.......my tumor was 8cm......not clear margins......and after not having palpable nodes......I ended up with at least 17 positive. My children were a bit older.....7, 9, and 13......at the end of this month....It will be 14 years.

    Hang in there......always tough in the beginning....really tough.....but it gets better with time.

    We are all here to help you get there......

    Jacqueline

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Thank you Jacqueline for responding. I am feeling so scared after realizing how large my tumor is. Finding out the measurement brings me right back to day 1 with fear. I worry about what you discovered- a large tumor means more node involvement which bumps me up to a higher stage. I know I have 1 node involved right now due to imaging and it is also palpable, but am worried about what more I will happen learn with surgery. My tumors are not reacting drastically to chemo. And then being close to the chest wall...??

    How did you get through your first year of treatment? How did you come to terms with the statistics? I am having such a hard time coping.

    My older 2 children are 9 & 11-- similar in ages to your 3 when you were diagnosed.

    I appreciate you being here for support. I hope to be alive in 14 years too.


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  • YATCOMW
    YATCOMW Member Posts: 664
    edited May 2018

    I wish I had the magic wand or secret sauce.....

    Honestly it was really tough.....first year, second year....even third year.....by the third year i felt better that I could beat it.

    Some thoughts:

    I did plan things weekly/monthly with my kids....something to look forward to.....something to distract me. Not sure how I could do it without their distractions. I was concerned we might all stop living due to the fear.....and I didn't want that.

    I also posted several success stories to my mirror......to remind me that if they could do well.....why not me? Two women had 19+ nodes and were 3 and 13 years out in 2004.....they are both now 14 years later still doing well.

    The drugs are better.......with more good drugs coming.....be your own best advocate.

    Hang in there......Let me know if I can help in any way.

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  • Manc
    Manc Member Posts: 66
    edited May 2018

    hi YATCOMW as a fellow Grade 3 with a lovely family and a real fear of recurrence your post means so much thank you After the fear and horror of the cancer my big fear was not living and enjoying my day ever again. I'm slowly getting there but people like yourself help so so much x

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  • Sophiemara
    Sophiemara Member Posts: 66
    edited May 2018

    Hey, I had a 8cm tumour, it was multi focal which consisted of one 5cm tumour and another satellite 3cm tumour. I remember being shocked and terrified of the size! It was also grade 3, but 2.5 years later I’m doing well. It definitely isn’t a death sentence, so don’t think it is. Things will get easier the further out you get and I do everything I can now (within my control) to reduce recurrence eg exercise and diet. You’re not alone!

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Jacqueline- Your insight is very helpful. I like the idea of making short distance plans to look forward to. I keep getting caught up in the long distance bigger picture and it makes me sad to think of what may be. So hard to imagine that there is all this cancer in me and it will be okay, but I will get through this funk eventually.

    Sophiemara-- I'm happy to hear you are doing well! I am multi-focal or centric too. I have 3 tumors that I know of- 9 cm, 3 cm and maybe a 1 cm? It is shocking. And does feel like a death sentence right now. I'm only halfway through with chemo and still trying to wrap my mind around all of this. I'm going start cleaning up my diet and upping my exercise too.

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  • lkc
    lkc Member Posts: 1,203
    edited May 2018

    Hi Magnolia Mom,

    I am truly sorry you are going through this. I know its hard and also the guilt associated with a stage III dx. I am a nurse, trained in oncology and was monitored closely since age 29 (due to a strong family hx)but was still was dxed with a stage IIIC BC dx. I was beyond shocked. My axillary and sentinel nodes were totally replaced by tumor and extra encapsulated, 12 out of 14 nodes positive,ducts, widespread involvement; ducts ,lobes and nipple affected, lymph and vascular invasion and no clear margins after my final surgery.

    That was 13 years ago this month. I am well and most likely you will be too. There areis great advancements currently with BC treatments.

    I KNOW it's a scary time, but you will get through it as so many other do. Stay strong, know many many women survive this diagnosis. come often to these boards for support reassurance and good information.

    Hugs to you for a gentle road that no one wants to travel on.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2018

    Magnolia-Mom - wanted to give you some encouragement. It is so staggering when you find out you have a tumor that size and still wrapping your head that you even have breast cancer. My tumor was 6 cm plus, 9 positive nodes, I was only able to have 3 months of Herceptin instead of 12 because of severe heart issues and I'm now 6.5 years out.

    I hear from many women as I write a BC blog for the past 6.5 years. I've heard from women with 12 cm tumor, 11 cm tumor and over 10 cm tumor who are still here and thriving YEARS LATER!

    But it does take much time to process, deal with treatment and wrap your mind around it all. But you can and will do it! These boards got me through it all and continue to do so! Sending all my best to you!

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    I learned last week, that this is all likely one tumor. But I guess surgery helps sort this all out. It looks like I will still have a sizable tumor by then. It is so hard not to worry about what more they will find.

    I also have this fear in the back of my mind that this is really stage 4 and they haven’t figured it out yet. Every ache plagues me. Anxiety is so hard

    Linda, I’m so happy to hear you are doing well. Stage 3 is so scary. Thank you for the encouragement.

    Denise, thank you for the encouragement. I am terrified and am struggling. I appreciate your support. I’m happy to hear you are doing well too.

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  • nessvess
    nessvess Member Posts: 7
    edited May 2018

    My tumor was initially diagnosed as 9x6 cm last June. It's scary to know something that big is growing inside of you. Neoadjuvant chemo shrank it to 4x3 by surgery this past January. I had 9/17 nodes, so I am now on Xeloda and making as many positive lifestyle changes as I can (exercising, Mediterranean diet, increasing Omega-3, taking daily vitamin d). For me, I felt better after I started treatment. It's an adjustment and will take some time to process, but you will. Hang in there!

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Nessvess- That is wonderful you had a good response to chemo. Thank you for sharing that you made it’s through. Anxiety takes me dark places. I’m in treatment and not seeing any shrinking which might be why this is harder? The lump is huge and not going anywhere. I think it might be getting the Swiss cheese effect I hear about, because it feels bumpy. I’m reading that er+ and grade 2 tumors don’t show the best reaction to chemo so trying to mollifymyself with this. Thank you for the encouragement.

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  • ck55
    ck55 Member Posts: 346
    edited May 2018

    Magnolia-mom,

    I was diagnosed with a 9CM tumor and 2+ nodes in 2006. Threw everything at it. Had reconstruction surgery in 2009. I am now 11 1/2 years out. Taking Tamoxifen. Feeling fine and looking forward to many more years on this planet!

    Hang in there. It’s hard at first but it does get better/easier as time goes on. Believe that you will be here many, many years from now.

    Cyndi 🙂

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Thank you Cyndi- It is encouraging to hear you only had 2 nodes positive. Waiting for surgery to know my number is so hard! But knowing may be even harder.

    I'm so happy you are doing well. I appreciate your message of hope.

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  • star2017
    star2017 Member Posts: 827
    edited May 2018

    How are you doing, Magnolia Mom? When is surgery?

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Hi Star,

    Thank you for checking on me. I'm still pretty scared. I'm trying hard to come to terms with this.

    14 weeks of chemo under my belt, 6 more to go. Surgery is supposed to be in the beginning of July.

    I'm wishing I could go back to my life of "not having cancer." It was nice thinking little things were big things.

    I am going to try a new counselor tomorrow. I'm working at trying to be in the moment, but the moment is sometimes so full of fear.

    How are you doing?

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  • star2017
    star2017 Member Posts: 827
    edited May 2018

    I remember telling my husband something similar, I'm tired of feeling like everything is a big deal, feeling like nothing can be light and fun. I think chemo makes things extra scary bc you have to pay attention to every little symptom for fear of blood count issues. The anxiety and worry eased a little after chemo was over.

    I'm doing okay. Had my first radiation treatment today. I was more nervous than I expected, but everything went smoothly.


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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Ah, you are not far ahead of me in treatment! How old is your baby?? I can't imagine navigating this with a newborn.

    Although, as big as my tumor is, I'm guessing it was around when my 3 year old was a newborn. If only I could go back in time and catch it early!

    My worries aren't around chemo, but surviving this. Little things aren't getting to me like they usually did at least. Silver lining?

    I'm glad radiation went well. You are so close to being done!

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  • star2017
    star2017 Member Posts: 827
    edited May 2018

    I don't know, Magnolia Mom. The docs said that my tumor probably hadn't been around that long. Not multiple years, certainly. I guess it depends on the pathology, but I think these things can grow fast, and unfortunately pregnancy hormones can speed up the process. Thankfully the baby is doing well. I actually think he's what keeps me focused and hopeful. His presence means I need to be here and healthy and able for many more years. So that's what I'm going to do.

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    That is a wonderful attitude Star. I am too busy wallowing to get myself back into the game right now. Hopefully, I can find myself a positive state of mind like yours sooner rather than later. I'm happy to hear your baby is doing well and yes, you will be there to take care of him.

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  • EuroAmerican
    EuroAmerican Member Posts: 27
    edited May 2018

    Take a day at a time. Don’t think about the next day. I was diagnosed with stage 1 colon cancer and stage 0 Melanoma the same year at age 40. I started reading here because not so many young women have colon cancer. And because I am high risk for breast cancer due to family history. My kids are 16 and 14. I am on mission to raise them because they don’t really have anybody else. And I WILL raise them

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  • star2017
    star2017 Member Posts: 827
    edited May 2018

    How was the new counselor, MM?

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  • Magnolia-mom
    Magnolia-mom Member Posts: 101
    edited May 2018

    Hi Star- I think she is going to work out better. I'm going to see her again next week. She recommended a psychiatrist to help me work out my meds better, She doesn't think the oncologists are the best to handle regulating me on them and I agree. I tried to go off Ativan twice now and ended up sobbing for days each time. She's going to use cognitive behavioral therapy next visit- interested in how that works.

    I'm still having a hard time feeling hope, but not as depressed feeling today. She also recommended I stop reading about bc. This recommendation has proved harder for me. But, I'm going to work on it.

    I met a 2b survivor today and her attitude is so good- reminded me of you :)

    EuroAmerican- I love your attitude too. Are you still doing a lot of traveling? I'm trying to figure out how to make that work for us.

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  • star2017
    star2017 Member Posts: 827
    edited May 2018

    MM, my mom had breast cancer as well as another type of cancer. Maybe it's having seen her go through this process that has helped me realize I can beat this. She's doing pretty well now. I do still get scared, but I also feel real gratitude that I live in a time of medical progress.

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