Terrified. Huge masses, inverted nipple, pain, etc.

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Crittcuddler
Crittcuddler Member Posts: 14
edited February 2018 in Waiting for Test Results

Hi my name is Michelle.
To start my story in May 2016 I went to the gynecologist for a large mass on my right breast near my armpit. He wasn't very concerned but wanted me to get a mammogram just in case. I never got it, and now I feel like such a fool.

A few weeks ago I noticed another large mass on the same breast on the top border, on the side near sternum. This mass hurt and as the days passed it got worse. It throbs during the day and I cant sleep on that side at night. Worried, I made an appt as soon as possible.

I had a diagnostic mammogram today and a sonogram, then a biopsy. I asked the doctor what he thought it might be if it was not cancer and he said "unfortunately I am fairly certain based on the images today that it is cancer". I was in shock and fell apart. I thought it was weird that he would make such a proclomation not having the biopsy results back, but also took stock in what he said, he has 25 years experience.

My masses are so huge, one easily 5cm or the largest they are graded at. The other is the size of a pecan. The largest one is right by my armpit, by my lymph nodes. My breast throbs all the time, and my nipple is inverted on that side. My breast is getting dimpled and is misshapen from the masses.

The breast cancer diagnosis isn't so scary alone, but my fear is that it has spread based on it being so close to my lymph nodes, how huge it is (I guess it has been there since at least May), and how angry it is. I fear metastatic breast cancer the most. Isn't it automatically a Stage III based on how large it is?

I feel my prognosis is very grim and am really scared.

If you can offer any wisdom or encouragement, I really need it.

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Michelle - I wanted to let you know that you have come to the right place for support. There are many supportive women, and also some great men too! I wish I could do something about your situation but unfortunately that's out of my power. I do know how you feel, and also remember that time before my diagnosis. I, and so many on this site, know exactly the fear and anxiety you must have. I wish that you find out that your doctor is wrong.

    You will see from my diagnosis (dx) that I discovered I had inflammatory Breast Cancer in Nov 2013. This time is the worse, and when you do know for certain then you can plan our path. There are many treatments for breast cancer, and please do not assume you have not caught it in time, if this is your DX. There are many women who have quite advanced stage 3 BC, but yet it did not metastasize. Whst I have just recently been DX with what you fear the most, I will say I have not been thrown into dispair and feel there is so much medicine can achieve.

    Let us know your results, and I will be thinking of you.

    Sarah

    Edited for typos

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  • Crittcuddler
    Crittcuddler Member Posts: 14
    edited November 2016

    I was reading about a common place for metastasis to be the spine and how it might manifest itself as persistent back/neck pain that isn't helped by traditional measures. Thinking about everything tonight I realize that what I thought was me sleeping wrong on my pillow all of a sudden, for months...(i have bought several pillows trying to fix the problem) was maybe a sign of something else that I had no idea about until a few days ago. I feel like it would be a miracle for it not to be the worst it can be.

    I know I don't even have my biopsy back yet (I will get it in a few days) but as strongly as the doctor felt already and with the severity and nature of my symptoms, I feel like I have already been diagnosed.

    It is really difficult to not think about when my breast is throbbing all the time. Its like "hey, pay attention to me, I won't let you not"

    I broke down in the office, pulled it together during the day and told myself several times "chill out, you don't have cancer" but tonight i just suddenly fell apart again which led me here. And last time I told myself " oh, stop, you don't have cancer" I didn't go get the mammogram that might have made all the difference. I know this is all conjecture, but I can't help but think about this stuff.

    When I initially posted on Facebook recently about the new lump and my symptoms, I got mostly people telling me, Oh cancer doesn't hurt and it is probably just something benign, but I was reading up on it and I knew it wasn't that cut and dry as pain or no pain, nipple discharge or none, and I had symptoms that didn't align with any of the benign conditions. I hope I didn't go too late. I am happy to have a place to come and talk to people who know something about this other than what they have "heard" and who can give genuine advice and empathy.

    Thanks for responding.

    <3

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    Even if you are diagnosed with cancer. The best thing you can do is to get MRIs of the areas of concern. My cancer was found by a very experienced doctor doing a sonogram. She knew before the biopsy. You need to get the results and go from there. Once you have the information you can weigh the pros and cons. But first you need to get biopsy results before you go any further. I would suggest anxiety medication for this most difficult time. You can drive yourself crazy by trying to solve a problem that you dont have enough information on.

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  • Fearless59
    Fearless59 Member Posts: 74
    edited November 2016

    Hi, Michelle,

    I am new here and also waiting mid-tests, not yet diagnosed. I waited 17 years between mammograms (oops!) and now have issues needing further testing after getting a mammo end of October. I am a BIRADs 5 I think.

    Pardon me if this is a duplicate; my first letter disappeared.

    I am sorry about your worry and discomfort. I would like to see you worry less!! Tumor size is no indication of growth rate or level of threat from what so many gals have said. See the chat forum where ladies with huge tumors share stories. A lot of them are doing great !!

    So, please try to not worry so much. "Worry is today's mouse eating tomorrow's cheese." I saw that 40 years ago and thought it was cool.

    While waiting to know the facts, walks and look at things. Do hobbies, keep your mood up as best you can, write positive letters to yourself. I believe our thoughts are really important in the "getting well" challenge.

    We are so lucky to have fended off breast cancer til this year....cause every year the research advances and the equipment gets better for helping us deal with it.

    Also, I was thinking that I am kind of appreciating the fact that if my body has this, at least the location makes it simple to surgically remove, compared to other parts of the body. We have these boobs protruding outwards, mine are D cups and fly all over the place when I try to do jumping jacks or jog. I can do with a little less boobs, I think. But, who knows ? I just try to remind myself that I am brave and strong, and will be fine, no matter how crappy the situation may get. I hope you will think this, too. And good luck!!

    Best, Margaret


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  • Fearless59
    Fearless59 Member Posts: 74
    edited November 2016

    Hi, again, Michelle,

    Being "stuck in a maybe" is a very uncomfortable situation, and I understand how it is. But, one thing that helps me is to actually use the "uncertainty" time as best I can. I have been in limbo for about a week since the 2nd and more serious round of bad news from the doc. During that time I have been reading a lot about what the different (new) cancer words mean, what causes it, what makes it grow faster, or slower, what treatments are commonly recommended for people who have what the doctors assume I have, and ways I might be able to improve my survival through change in diet and supplements. I am a bit overweight and have learned that statistically this increases my chances of getting cancer. I bought a few books and read things on the internet , and spent time with my daughter for thanksgiving. We did crafts a lot. And, I have a plan for keeping it quiet for most of the family, for now. No use worrying them for the moment, it could still be false positives. I made a list of " eat more of this and less of that." I'm trying to help my body keep this at bay by cutting back sugar, coffee, and fat, hoping it will keep it slow to advance. So, this is working for me........ being proactive and finding SOMETHING I can do to help my body do better in general, whether I have cancer or not. I see it as an opportunity to push the "reset" button and start fresh being healthier.

    I have read that high intake of caffiene can cause some (non-cancer) breast problems and pain and cutting back on coffee helps a lot with it.

    I hope some of this helps a teeny tiny bit with what you are feeling.

    Love and good wishes,

    Margaret

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  • snowsogal
    snowsogal Member Posts: 79
    edited November 2016

    Hi: I want to encourage you. The time I felt my mass was when it was under my right arm pit. I did not feel a mass on my right breast where the cancer originated from. Fortunately, my cancer was contained in those areas. I hope yours will be too.

    Do not jump to conclusions! My ultrasound and breast MRI said it was a certain size, but it is when they do the breast tissue biopsy that it is what size it will be, no matter what the other tests show. The size is what dictates what Stage it is, but also how much do the cells resemble breast cancer cells, and how aggressive is it. If you are estrogen/progesterone positive, and Her 2 negative. This is one of the easiest breast cancers to treat, and usually is non-aggressive, I believe. Susan Komen's breast cancer book is a good resource.

    I hope this helps.

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  • Crittcuddler
    Crittcuddler Member Posts: 14
    edited November 2016

    I got my pathology report today and I do have cancer. Both masses are cancerous.

    The report says

    Right Breast mass, 10 o clock, Grade ll infiltrating ductal carcinoma, high grade ductal carcinoma and situ. 14.2 mm (1.4cm)

    Right breast mass, 1-2 o clock. Grade ll infiltrating ductal carcinoma. 16mm (1.6cm)

    The biopsy was done Monday and I got the results today. (Wednesday). I don't know about ER, PR, HER-2, or Ki67 yet.

    I am most concerned about metastasis right now because of how long I have had the 10 o clock tumor (since May), and because both are infiltrating, and are growing fast, and are angry (they throb all the time). I am concerned about metastasis mainly in the spine because I have been having neck and upper back pain on my left side for a long time now and I thought it was the way I was sleeping or my pillow all of a sudden. (I have bought several pillows)

    I just want this breast off NOW. I haven't had a BRAC test yet. I want to have both removed because I am worried about getting it in the other breast at some point.

    So that is all I know right now. The pathology report had all kinds of techincal descriptions that I don't understand, but I thin what I talked about was the important stuff to share right now.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    Hi!

    I felt exactly the same as you do when I was diagnosed. I wanted my breast off right away. But, I'm glad I waited to see the full report first and to have some scans done before planning anything. To begin with, most of our cancers have been in our bodies for years before diagnosis, so there's always a chance that cancer cells have already broken off, entered the bloodstream and/or lymphatic system, and found a new home. Yes, that is a scary thought.

    I agree with Meow that an MRI or a PET scan might be helpful to determine whether or not nodes and/or other parts of your body have been affected. That will at least give the doctors a sense of where things stand. Knowing the kind of breast cancer (hormonal status and HER2 situation) is also helpful.

    As you can see from my signature, I was diagnosed with triple positive cancer (ER+PR+HER2+). That meant I had to put my surgery on hold and do five months of chemo first. But, the chemo was so successful that I eventually opted for a lumpectomy rather than a mastectomy.

    Take care, and take your time. Nothing has to be done right now. There is enough time to weigh your options and to think about what is best for you. ((Hugs))


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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    CrittCuddler: so sorry you have got the diagnosis (dx) you feared. I remember this time well, the time after diagnosis but before having a treatment plans in place is the worst. Even though I have been diagnosed with mets, my initial dx was the worst time of my experience with BC. Once you know about your receptor statuses and what is in store, then you will feel better. What is your next step - do you have an appointment to discuss the results?

    Try not to use this time to read everything and try to keep off Dr Google - that is a scary place where all sorts of irrelevant info can be discovered. This site is very good for information, but remember you wont have everything.

    You said your cancer is grade II, that is good because that means it medium grade, and not so aggressive as grade III. Also - your back pain most likely has nothing to do with your DX. I remember when I was driving 50 miles back and forth each day for radiation into LA I started to get a back ache. My first thought was - oh no - its progressing. But it wasn't and it took me quite a few days to think clearly and realise its all that sitting the the lovely LaLa land traffic.

    IF you are feeling anxious then get something to help you. Many people on this site have found such meds very helpful at such times.

    I will be thinking of you - let us know how you get on.

    Sarah

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited November 2016

    Those really aren't very large tumors -- anything under 20 mm is considered Stage 1 (small). My one tumor was 1.5 cm (15 mm), and I was grade 1 (indolent).

    There is a whole bunch of testing that they will be doing that will tell you and your docs what the best treatment will be for you, based on the pathology of the tumor.

    In the meantime, please remember that most women get through breast cancer treatment successfully, and go on to live full and happy lives. Honest.

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  • Racy
    Racy Member Posts: 2,651
    edited November 2016

    Hi Michelle, I suggest you get a doctor's appointment as soon as you can so that you will have more information, rather than worrying about things that may not be relevant to your situation. I'm sure you will feel calmer after talking with a doctor.

    Let us know how you get on.


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  • Crittcuddler
    Crittcuddler Member Posts: 14
    edited November 2016

    Okay forget what I said about size. That pathology sizes only go as big as the maximum depth of the needle. My tumor or tumors (hard to tell if it one big mass or many) is at least 5cm which puts me at a Stage 3 probably. I start chemo next week and will be getting a full body PET/CT to check if the cancer has spread to other parts of my body. They will also be doing a breast MRI to get a better view of the tumor/s before my mastectomy which won't happen for 6 months. Since it is so large and my lymph nodes are involved I will do chemo first.

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  • 3kidsmom
    3kidsmom Member Posts: 21
    edited December 2016

    Crittcuddle, I just wanted to tell you that my tumor was 5 cm, invavsive ductal carcinoma with lymph node involvement. That was five years ago. So far I've had no recurrence. I did cut out sugar, grains and processed foods which caused me to lose fifty pounds and feel better than I had felt in years. I took tamoxifen for 2.5 years and am finishing up Femara. Keep positive. You can do this

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    Crittcuddle, I hope the scans come back good. Praying for you.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Hi Crittcuddle!

    I was also Stage IIIA, with one tumor 5cm+. I also did chemo first, and it wiped out all of my active cancer. I'm with Meow; praying that your PET scan doesn't reveal metastases. My best to you....


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  • Ecaz82
    Ecaz82 Member Posts: 2
    edited February 2018

    A few weeks ago I had a lot of discomfort in my left nipple which for me is very uncommon. I never have breast discomfort so right away i went to the doctor. Mamo and ultrasound done the same day. I knew in my gut something was wrong.

    6 years ago I had a lump removed from my right breast. I suffered for over a year before anyone ordered an ultrasound. And only of the right breast. B9. Had surgery to remove lump and everything was negative.

    I moved and began work for a doctor that had an imaging center across the way. One day a girl.came in and said they were having free mamograms fir the month of October for breast cancer awareness. I always remember what I went threw years past and the fact that a mamogram was never ordered. I went over and got my free mamogram. Normal.

    Fast forward to a week ago, they compared the mamo from 2015 to now and there were changes in the lymph nodes. Along with the sharp pain, inverted nipple, Birads 4, a biopsy was recommended.

    I am scared. But most of I am angry! I am angry that this is happening. The biopsy appt seems weeks away when it's only days away. I am hopeful but it is difficult to keep that mind set.

    I could use some guidance and some comfort. I nave read all.of your post and it gives me hope.

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  • Renee1976
    Renee1976 Member Posts: 2
    edited February 2018

    Ecaz, I am sorry you are going through this. I am glad that they are doing the tests as soon as possible. It seems so arbitrary which doctors order further tests and which do not. I stopped Breast feeding my last child over 6 years ago. All of the sudden in May 2017, I woke up with a acute case of mastitis that mirrored IBC symptoms but luckily the antibiotics quickly took care of it. About a year before that my mammogram had come up as showing something but the OBGYN aid let’s wait and see until next time as w be sure due to your dense breasts. After the mastitis he aid to wait another year as women don’t really need them ever year any more. The two weeks ago I woke up with acute mastitis in my other breast. Back to the OBGYN and we did antibiotics and he aid to come back in a week. So I did. The inflamation had subsided but there were some obvious lumps which even he admitted were not fibrous. I said I wanted an ultrasound and he said I should wait a few more weeks. Why!? I finally got him to schedule me the exams. Just feel like something is not right. I’ve already had a golf ball sized benign tumor removed once that I found myself so I know what it feels like

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  • wallan
    wallan Member Posts: 1,275
    edited February 2018

    I had stage 3A bc with 2 positive nodes. My tumor was 7 cm. The surgeon and the oncologist both told me it would be mets in about 2 years. I was terrified. Before I was dx'd, I had a lump in that breast for years, but doctors said it was just a cyst (I had ultrasounds and mammogram). When I insisted on having the cyst removed, it turned out to be cancer. I understand the frustration and anger and terror.

    I had mastectomy, lymph nodes removed, chemo, rads, hormone therapy, ovaries and uterus out. Its been 14 years now. No mets!

    So don't count your chickens before the eggs are hatched. And the doctors can sometimes add to your fears.

    Hugs to you..

    Wallan

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  • Ecaz82
    Ecaz82 Member Posts: 2
    edited February 2018

    thank you guys for sharing your store. It gives me so much comfort in hearing them and helping put my mind at ease. i am trying to stay positive as best i can. I have great people around me and i have faith. I have faith in myself and in my body. Thank you♡

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