28 - 8cm tumor

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Gdubs23
Gdubs23 Member Posts: 12
edited March 2019 in Not Diagnosed But Worried

Im 28 with a history of Neurofibromatosis type. I’m in the process of testing. I noticed a large lump on my right breast about a year ago. My first doctor sent me to get an ultrasound which came back clean, which led her to just offer me pain killers For the sharp pain I was having.

it took until 8/2018 for a doctor to take me seriously - he sent me to get a mammogram which showed an 8cm lump along with calcifications that Were categorized with a birads 5 - they called me and told me there was a high chance of me having breast cancer, and I’m set for biopsy in a few days.

I’m a very positive person and believe I’ll have a good outcome, but iv also prepared myself to get unfortunate news. For the most part I’m doing relatively well, but Naturally find myself burst into tears the closer I get to this biopsy - I was already told if it comes back positive they want to do a full mastectomy because of the size of the lump - they then would want to do the gene test, and suggest to remove both breasts if that comes back positive.

Not sure what I’m expecting to get out of writing this - but It’s a lot easier to talk to people who’s gone through this before. My family is a great support system, but never had to deal with this before.

I know you won’t have the answers I’m looking for, but maybe you can tell me if you had similar experiences.

All my blood work has come back perfect and the US I had in March showed nothing when the one done in August showed the calcification - can that possibly be an indicator that it may be early stages of it turns out cancerous? I’m aware it’s a birads 5 there’s a high chance, but doctors aren’t comfortable giving me a percentage (understandably so) but I’m losing it now.


ANy feedback would be great. Thank you




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Comments

  • djmammo
    djmammo Member Posts: 2,939
    edited September 2018

    Gdubs23

    Two pertinent articles:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC55730...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC52439...

    Discuss this topic with your doctors if you haven't already.


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

    Just wishing you luck as you navigate this road. It is a time full of anxiety and emotions as you

    do and complete tests and biopsies. All my best wishes to you!

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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited September 2018

    unfortunately right now iv only talked to the surgeon - I’ll have to talk about NF1 with the oncologist, if that comes to it because no ones iv talked to is familiar with it.But I was also thinking, since I have a higher risk, to maybe remove them anyway? I I don’t know

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  • wrenn
    wrenn Member Posts: 2,707
    edited September 2018

    I think it is good that you came here even if just to vent. It is a scary time for you and especially when you don't really know yet what is going on. Come here to talk about how you are feeling whenever you feel like it. I hope they do the biopsy soon so you can either feel relief or start planning. Hopefully you have someone in your life for support as well. You are too young to be faced with this damn disease.

    Try to distract yourself with things you like to do while you wait for answers.

    Wishing for best outcome for you.


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  • star2017
    star2017 Member Posts: 827
    edited September 2018

    I’m sorry. I was also young, tho older than you, and shocked by an 8cm tumor. I’m hoping for the best for you

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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited September 2018

    my biopsy is tomorrow - not sure what to expect completely with that -I appreciate the kind words! I haven’t been able to sleep and I doubt tonight would be any better /:

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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited September 2018

    unfortunelty j have to wait to find someone that is familiar with NF1 - neither my PCP or surgeons do - hopefully, if it results to cancer - my ongologist would know more. I’m well aware that NF1 has an increase chance of cancer which is why my thought is to remove to breast with the lump regardless of cancer or not - why take that chance when Iran already there? Unfortunetly my sergeon didn’t seem to want to remove it if Iran not cancer burn my OB also suggested that I do i do. It’s just just a waiting game with no answers jnfortnet

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited September 2018

    Gdubs23, it's a difficult path to navigate, especially being so young. It's okay to vent... cry it out, shout it out, whatever makes you feel a bit better. Then, move on. Take it a day at a time. Baby steps. And come back with the results so we can either support you, or celebrate you! Sending positive vibes and prayers your way.

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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited September 2018

    everyone one of you are absolutely amazing! Either way, it’s wonderful that there is a community who is there for people when they need it! I’ll keep you guys updated as I find out! You’ve already helped so much - thank you <

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2018

    prayers Gdubs23. Sleep is difficult when we are worried but try to get some rest at least. I had several biopsies and while they were not pleasant they were not that bad either. I watched all three of them on the screen. I like that kind of stuff though. Once I was numbed up I really didn’t feel anything. Ice packs help afterwards. Ask them for one to put in your bra/shirt before you leave.Hang in there.

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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited September 2018

    had my biopsy done early this morning - wasn’t terrible. Now I could do is wait

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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited September 2018

    can anyone tell me what to expect from the biopsy results? If it is cancer, what kind of information can it Tell me

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  • vampeyes
    vampeyes Member Posts: 1,227
    edited September 2018

    Gdubs, I am in Canada, I was told it was cancer, the type and the next step. As for the size and mastectomy, a friend had a 5 cm lump, they treated her with chemo first then surgery (lumpectomy). If it's cancer maybe that can be done with your lump, something to discuss with your surgeon and oncologist. I am thinking of you and sending good vibes your way for a clear test!

    xxx

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited September 2018

    the biopsy results will tell you the things you see at the bottom of people's posts....

    - the kind of cancer (ductal, lobular, etc) (I have "IDC" = invasive ductal carcinoma)

    - the stage, if iknown

    - the grade (0-3), the mitotic rate (high or low), and nottingham score (up to 9) / all these basically indicate how aggressive/fast growing/ fast morphing it is

    -the size of tumor, in mm or cm-- and whether or not there are any lymph nodes involved

    -are there Estrogen or Progesterone receptors in tumor cells (ER/PR; + or -).

    If you are negative on both of those they will likely test you for HER2 receptors, which will take a few more days to get back.

    Good luck!

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  • bluepearl
    bluepearl Member Posts: 961
    edited September 2018

    Is it possible you have a benign neurofibroma? I agree with you in removing the breast regardless as you do have an increased risk. Calcifications alone are not necessarily indicators of breast cancer; it is their FORM that actually matters. At 8 cm, this is a large tumour and I am hoping that it is a neurofibroma and nothing else....given that your doctors don't know much about it, hopefully this is the case. ((((HUGS))))

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2018

    Hi!

    My sister and nephew have neurofibromatosis, Type 1. They are both followed by a center in Philadelphia which specializes in genetic conditions (my nephew has a benign brain tumor that -- if it grows -- may touch his optic nerve and affect his eyesight). Do you have access to doctors who focus on NFB1?

    As for what you'll learn after your biopsy.... The first thing they'll let you know is the type of breast cancer. Like santabarbarian, I have the most common form of breast cancer, IDC. Shortly thereafter, I found out I had an aggressive tumor (Grade 3), and that my cancer tested positive for estrogen and progesterone receptors (ER+/PR+). Last, but not least, I found out that my cancer tested positive for an overexpression of the HER2+ protein which led me down the path of chemo and targeted therapy. Good luck!

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  • lekker
    lekker Member Posts: 594
    edited September 2018

    https://www.breastcancer.org/cms_files/98/Breastcancerorg_Pathology_Report_Guide_2017.pdf


    Ihope you get good news, but with a BIRADS5, you’re smart to be prepared. Here is a link to a document from BCO that really helped me when I got the cancer call over 6 years ago.



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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited October 2018

    My PCP confirmed that my biopsy came back positive for “DCIS, clingy and comedo type. Grade 3/3 with associated calcification. “

    Not sure what all that means but he told me so far it appear to be locolaized.

    I havent spoken to an oncologist yet or my surgeon

    So I was limited in my information, but I do have an appointment on the 9th with general surgery -

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  • sparrowhawk
    sparrowhawk Member Posts: 179
    edited October 2018

    I am glad you now have some answers, even though it is such difficult news. Know you are in my thoughts and prayers.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited October 2018

    I’m sorry Gdubs. Your head must be spinning. It is so difficult in the beginning until you know exactly what all the details are and have a treatment plan in place. You have a whole army here to help you navigate through this. As always, I’m praying for all of us.

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  • Gdubs23
    Gdubs23 Member Posts: 12
    edited March 2019

    I ended up having a double mastectomy on November 7th. Labs came back confirming it was an 8cm tumor - stage 0 DCIS

    I am a little confused, because I thought the stages were higher for a tumor at that size, but they said it never spread outside the ductal wall and my nodes weren't compromised. No chemo or radiation were recommended due to the 3-7% chance of reaccurence. They now have me on tamoxifen.

    But they told me I was now cancer free - but my paranoia keeps getting the better of me. (Like what if someone is wrong kind of feeling you know) lol - but that’s where I am at now

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  • blah333
    blah333 Member Posts: 270
    edited March 2019

    I didn't realize your post was old, I just read the top and started to write a response... before seeing your latest update I was going to mention why mastectomy might be a good idea! I had 6cm DCIS (multi-focal) and also got bilateral mastectomy. DCIS is not really a "tumor" but precancerous cells in the ducts of the breast. I also struggle with paranoia that it will come back, especially because I've had a swollen node since my surgery that I had to recently get a biopsy on (about 1 year after surgery). I was 35 when this all happened. I am not on Tamoxifen but I can see due to the 8cm they might want to make that precaution.

    I'm surprised they told you it's a 3-7% chance of recurrence. I thought it was lower for DCIS. However due to age, size, and there being a palpable lump (I had one too but more pea size) maybe they have the % higher for you. I think the only thing that will help is time, to stop the worry. But who knows. Sometimes I feel doomed because of this experience. Any odd sensation or discomfort usually makes me think of cancer....

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    For me the way of turning down my recurrence worries is to take impeccable care of the things that ARE inside my control, that are shown to be helpful w TNBC and helpful in preventing recurrence. Eat healthy, anti-inflammatory diet. Take vitamin D, Fish oil, melatonin and metformin (the latter two have anti metastatic properties) among other appropriate supplements. Exercise. Low animal fat, mostly vegetables, low-to-zero alcohol. I feel very vital and good on this plan and if I recur, at least I can look my kids in the eye and say, "I did everything I could not to recur." I am twice your age and my kids are grown (youngest is 21), so as much as I really want to live for a long time, I can accept it if I do not. I have had friends and peers who have had cancer, and others who have died, and this makes me feel less isolated in my situation. Being younger, this must be very difficult.

    TNBC generally either comes back fast or not at all. My "in case of recurrence" plan is to write a book that I have long imagined writing, so in case I do have a short life span I will have made my remaining time meaningful and left something important behind me. To me that's the best balance I can achieve between worst case scenario and best case scenario: take care of myself as though I am aiming to live to 90, and live right now as though I only have another 5 years. Either way I'll have done my best to play my hand of cards as well as I can.

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