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De Novo Stage IV

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kbl
kbl Member Posts: 2,775

I'm wondering if there is a topic just for de novo Stage IV. I'd like to know how people found out. Did you have symptoms that led you to the doctor for an answer? Was it found out of the blue when you had another issue and how was it found? Are there others like me who have never shown it in your breast but only where it is during Stage IV? Where is yours located?

I'll go first. Mine was found only through endoscopy and biopsy because I had early satiety and weight loss. No other test, including imaging, has shown the cancer, even in my stomach, where it is.

I know I've had trouble finding people here who have it in their stomach, but I'm still interested to know how many of us were de novo at the start.

If there is already a thread about this, please point me in the right direction, and I'll delete this post.

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  • olma61
    olma61 Member Posts: 1,025
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    I was Stage IV at diagnosis but I did have a breast lump. Had a mammo, US and biopsy and was originally staged at Stage 2


    in the process of preparing for surgery I was given a breast MRI

    The radiologist saw what looked like a lung nodule so I was sent for a PET scan.

    PET scan found bone Mets, no lung Mets.

    I notice you have ILC in your signature. I think ILC is more likely to settle in the uncommon met sites like gastro system and is less visible on scans.

    Here is a thread about uncommon Mets sites you may not have seen.

    https://community.breastcancer.org/forum/8/topics/876844?page=1#idx_1

  • sondraf
    sondraf Member Posts: 1,616
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    Im de novo, had/have a lump. I'd had a reduction at 22 whereby almost 4 lbs of dense breast tissue was removed, nipples adjusted, ducts cut, etc. I was told that at about 15 years in I would probably need a lift or some recontouring and to expect changes. No breast cancer/cancer at all in my family so between having reconfigured breasts, lack of family history, and believing I was too young (and a ton of work stress at the time) I just didn't clue in to what was going on. Looking back I feel like the biggest idiot in the world. Also, in the UK you don't do a yearly exam with a gyno like you do in the US, and when I requested a pap as I hadn't had one in a while, there was no breast check involved.

    To throw in more confusion I wrecked my back in a sports class right before I was going to go to the doctor about breast changes. Having had a loooonnnnggg and painful back history and a potential genetic reason for where the pain was, I went in for that first. No clue that it could have been connected to my breast. That got more and more painful and then I started having a painful lump in my armpit. There was some more delay for various reasons, but eventually I was finally diagnosed. I wasn't told what they thought my initial stage was, but I would have expected it to be probably III anyway. In the UK they send you for all the scans before surgery, and the CT threw up the mets in the pelvis that had been causing my back pain, the nuclear bone scan confirmed it, along with other hot spots.

    My mets are bone only, primarily in L1-L5 and sacroilliac joints. They map almost exactly onto areas of previously imaged degeneration and old injuries. To date the 8 cycles of I/L have cleared up almost everything in the bones except for one or two very faint areas of takeup, but the stupid breast lump is hangin' tough and hasn't changed in size one damn bit.

    There are a few other ladies on here that are de novo like Piggy99 and LoveFromPhilly and Illimae and Rosie24 and I think mara or mel were also? Or Candy started with her chemo but the found something for a different scan so she is more or less de novo as well. And there is someone who didn't have a primary - gah, can't think of her name now.

  • candy-678
    candy-678 Member Posts: 4,128
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    Sondra is right. Yes, I consider myself de novo. I found a lump. No routine mammograms for a few years--my bad. I thought lump was fibrocystic breasts and it would go away with the time of the month. Was scared and in denial. Finally went and got mammo--bad news. Then biopsy--bad. Then lumpectomy--cancer diagnosis. Mastectomy---- Stage 2B. Started IV chemo. 2 months later ended up in ER for a different issue and had CT----- 8cm lesion on liver (the size of a baseball). Stage 4. Found bone mets on PET ordered then. So..... I think de novo. If they would have done CT or PET when found Stage 2, they would have found Stage 4 and would not have had mastectomy or started IV chemo. I think the liver and bone mets were there for a while with the size of the liver met. Definitely did not go from Stage 2 to Stage 4 in 2 months and while on IV chemo. Thus de novo.

    No symptoms of liver involvement. My liver labs were normal. No pain or swelling. Good appetite. No weight loss. No nausea. Have rheumatoid arthritis, so skeletal pain was thought to be the arthritis.

  • kbl
    kbl Member Posts: 2,775
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    Olma61, thank you for writing. I’ve been asking a lot of questions lately because I just can’t figure this out in my head. No history in my family, no breast cancer seen in breast. I just want to understand it, and I may have to come to the conclusion I may never understand. I had seen those links, but it’s always good to look at them again. Mine is not visible on any scan, so this ILC is definitely sneaky.

    SondraF, I see you were diagnosed towards the end of last year. We can certainly beat ourselves up for not knowing what to look for and not thinking anything is wrong. I had the early satiety and weight loss start in October of 2018, and I didn’t start the meds until June of 2019 because I waited until April to have an endoscopy. Then they wanted a second. That’s eight months lost right there. I totally get where you’re coming from. I hope the breast lump starts to shrink for you and the other spots react as well. Thank you for letting me know your story.

    Candy, that is so crazy. I’m so sorry you had a mastectomy before they found the liver mets and then the bone mets. I know we’ve talked a lot lately, and I really appreciate you telling me your story here. I’m dumbfounded that with an 8cm lesion on your liver that you had no idea it was there. That’s what’s so nuts about this disease and why I’m trying so hard to understand. I think what I’m most concerned with is that it had spread outside of my stomach and I don’t know because imaging says it’s clear. I don’t trust the imaging I’ve had at all. I’m really finding comfort in getting to know all the ladies on this site. Thank you

  • Rosie24
    Rosie24 Member Posts: 1,026
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    Hi KBL,

    Interesting question, and it's interesting to read the variety of answers so far.
    My dx started with a yearly mammo that came back with suspicious axillary nodes (nothing in breast was mentioned). I then had an ultrasound biopsy on one of the nodes and a stereotactic mammo (I had not been having 3D mammos) picked up a breast mass which was also biopsied. Yes, both cancerous. I saw a breast surgeon who outlined my original plan of chemo, lumpectomy, radiation. She also ordered a bone scan and ct for chest, abdomen, pelvis “just in case" there was any spread elsewhere. Yup, there was, to my liver. Two “tiny" lesions she said. MRI showed more than two, but still smallish. So my plan changed to no chemo but targeted therapy and AI, ibrance and letrozole. The only clue I had was that my most recent breast exam by my gyn was painful, and it had never been before.

    I tell everyone I can to make sure to get a 3D mammogram. I think it would have picked up my breast tumor sooner, which may have changed my path.


    Good luck to you. I've found these boards to be so helpful. It helps a lot to know we're not going through this alone, and to get (and give) support from friends here, Hi Sondra, Candy, Olma! 😊

  • illimae
    illimae Member Posts: 5,619
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    illimae here :) I was diagnosed de novo too. I found a lump seemingly out of nowhere, saw my doc who was concerned but not panicked since I was only 41 years old. I had the mammo, ultrasound and biopsy confirming BC. I decided to go to MD Anderson who ordered a CT body, which found my hip bone met. Boom, stage IV from the get go and all within 2 weeks of finding the lump. I was/am considered oligometastatic as well, so I had chemo, surgery and radiation, then we found brain mets too. It’s definitely been hard but 3.5 years later, I’m still pretty much ok.

  • olma61
    olma61 Member Posts: 1,025
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    I know we can go crazy trying to figure this disease out and I definitely have my theories about my own cancer but we don't really know...most breast cancer is not the hereditary type, according to science. So that leaves environmental factors and/or random bad luck.

    I was not getting regular mammograms either, but I did do breast self exam regularly and was pretty in touch with my body. I went from feeling nothing in either breast to a 2cm lump that seemed to pop up over night.

    It turns out I had cysts too, which appeared questionable on the mammoand two of them were biopsied also but were benign. I was 59 so definitely was supposed to go for "preventative" mammos but I never did.

    I never had any pain or aches of any kind to clue me in, if that lump had not made itself known and been so close to the skin surface...who knows. In fact, I was exercising , eating healthy and feeling better than ever right before.

    And I have no known cancer of any kind in my family except one great uncle who developed cancer in his 80s.

  • sondraf
    sondraf Member Posts: 1,616
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    I've gotten better at squashing down the 'why me?' question, but no lie, sometimes I read of ladies on here or another UK-focused forum who havent gone for a mammo for years and get either a scare or a tiny cancer or others who have similar stats to me but are stage 2 and I get frustrated/annoyed that they 'got off easy' and I didn't. Then I get annoyed at my immune system that failed at the one crucial hurdle - never sick but cancer? yeah well sorry, took a coffee break on that one.

    I think the answer is there is still far too much unknown about this disease. Maybe for some it stops at the lymph nodes but others it takes the bloodstream flume ride right away. Beesie had stats in some thread ages ago about how there are the "true" de novo women and then there are the ladies who were most likely de novo at the start, but being a low stage they weren't imaged, the chemo tamped it down, and then they 'recur or progress' 18 months later when in reality they were probably 4 all along.

    Oddly enough, after six months of adjustment I feel much better with hormone suppression than I have in over 15 years. I thought for a very long time I had hypothyroid problems or adrenal exhaustion or something, now I wonder if my hormones were just out of whack but having tested negative for hypo I didn't know what else to ask for in terms of exhaustion and fatigue - back in 2005!


  • kbl
    kbl Member Posts: 2,775
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    JavaJana, wow, that is quite the ride. I can't imagine doing all the things you think are necessary, as a mastectomy, to then be told it's Stage IV. That's interesting about your clavicle. I've had a locked shoulder for a year. Of course, imaging shows nothing, so I wouldn't know if it's cancer or not. I'm sorry you have joined this group and that you not only have breast cancer but more than one kind. Thank you for your story. It's hard to believe we can have more than one type of cancer at a time.

    Rosie, I'm sorry you're here as well. I had a 3D mammogram, ultrasound, and MRI. Nothing showing.

    On my CT last October they said there was a tiny spot on my liver, 3mm to 4mm, not significantly hypermetobolic, most likely a cyst. I don't know how they tell the difference. I also have a stable 8mm lymph node in my right axilla. They don't seem concerned at all about those.

    I'm glad they found the spots so that they could give you the correct medication instead of chemo.

    Thank you so much for your story. It's really nice to have support and people sharing what they're going through.


    Illimae, I've been following your journey, and I'm so sorry for the issues you've been having. I had to look up what oligometastatic means. There are so many terms to understand. You were so young when you were diagnosed. I hope that you keep feeling better. I try to keep up on people's diagnoses, but I may get things mixed up sometimes, so please forgive me if I'm wrong. You've just now been able to eat more, am I correct? Thank you for telling me your story as well. It really helps.


    Olma, I didn't go for regular mammograms either, and I did get mad at myself at first for not going, but when they couldn't fine anything, I didn't feel so guilty. I just got my letter saying I'm due again I'm not sure if it even matters now if I go.

    It's funny how the brain works. I think back to when I was under five years old and swallowed a whole bottle of baby aspirin and think, hmm, toxic substance? I had my stomach pumped and was okay, but who knows what kind of damage it can do later in life.

    Sondra, I hear you on the why me. I don't know if I've actually felt the why me, but mine is sort of the how the hell did this happen me. I think all the false up-and-down diagnoses of Multiple Myeloma in 2013, 2015, and 2016 has me thinking if we missed it then. I'm trying to get an MRI of my lumbar and pelvis again to see if they still see what they saw back then and if it's changed. That is the only imaging that ever said I had numerous lesions in my spine but then said negative in bone biopsy. Was that wrong? Who knows?

    I'm so glad you're feeling better. I do have hypothyroid and have had that for so long, I can't remember when it started. I can relate to the fatigue. Feeling exhausted since 2005 must have been so frustrating. It sucks when you know there is something wrong but can't figure out what it is.


  • illimae
    illimae Member Posts: 5,619
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    KBL, you’ve got it all correct. I am grateful for the small progress being made. If not for the nerve damage, I’d be walking, laughing, cooking with my usual cheerful attitude but I did laugh a lot last night to the point of tears. I finally feel like I’m crawling out of the other side of these horrible 5 months.

    Have a great day ladies! 😀

  • kbl
    kbl Member Posts: 2,775
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    Illimae,,I’m so glad you got to laugh. I have those kind of laugh-until-I-cry moments with my sister, except we haven’t seen each other in person for months, and she lives within walking distance of me. I hope your nerve pain gets better and you keep progressing towards feeling better every day.

  • divinemrsm
    divinemrsm Member Posts: 6,154
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    KBL, I was diagnosed de novo in my early 50s.

    December 22, 2010, I found a lump in my breast a week after my mammo which I'd gotten annually for over a decade. After a biopsy revealed malignancy, I had additional testing. An MRI showed no lymph node involvement so it was thought to be stage 2. I was lined up to have neoadjuvant chemo to try to shrink the tumor so I could have a lumpectomy instead of mastectomy. Prior to chemo starting, the onc ordered a bone scan as a baseline and when that showed suspicious activity, she ordered a PET and that confirmed bone metastases. All this took another month or so from when I found the lump, but I choose the December date as the good ole "cancerversary" because I was stage iv then and who knows how long even before that.

    I, too, questioned a great deal the first couple years after diagnosis; I think it's normal and good to do. Many of us have to research and question and roll ideas and possible reasons around in our heads when coming to terms with the how and why of a metastatic diagnosis. And this won't be of any help to you, but in the end, I am left believing mbc is basically a crap shoot.

    KBL, I personally don't think your swallowing a bottle of baby aspirin at age 5 has anything to do with your mbc diagnosis. As an aside, when I was little, my next door neighbor, a boy, did the same thing. Those aspirin were so tasty, kids thought they were candy!

    Sondra, I get miffed occasionally, too, at those who seem to get off easy or with those who, despite questionable lifestyles never seem to have health issues. An in-law has smoked longer than the 30 years I've been married and has never had a mammogram. She's 67. But there I was, a non smoker diagnosed in my early 50s. Not that I wish harm on my in-law, it's just that some things suck and seem unfair.

    Also, I felt the same things for awhile towards my body, feeling like it betrayed me. There's already an outright social war on women's bodies, with emphasis and severe judgement on how our bodies look. Our bodies are doing the best they can in light of the fact that it's a tough world out there. These days, I'm much, much better at self-kindness and no longer blame my immune system.

  • kbl
    kbl Member Posts: 2,775
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    DivineMrsM, thank you for your story. I believe you when you say it's a crap shoot.

    I truly don't believe the baby aspirin caused the cancer, especially since it's breast cancer, but silly thoughts like that do run in your mind periodically. Yes, those aspirin were very tasty. Lol.

    I think it's hard to say I have breast cancer when I've never been diagnosed with it in my breast and it's not seen in any imaging. I did have lumps when I was younger, but they always said they were normal. I never had a biopsy back then. After I had my partial hysterectomy, the lumps stopped, so I assume they were right.

    I think the main thought in my head right now is how long has it been lurking in my body with no treatment? I know the symptoms started in October of 2018, but they say it takes a long time before you have symptoms. Has it been five years, eight years, ten years? Those are the thoughts I have. I am going to turn over a few more stones to try to figure it out, but if I don't get the answer, I will choose to let it go and just live. I have to say that I enjoy every day, and it truly doesn't consume my thoughts every minute of every day, thank goodness. I have some great distractions.

    Thank you, again. I'm finding itvery interesting reading how each of you were diagnosed.


  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Well my story follows similar to others, you can follow all the guidelines, meaning yearly mammograms, ultrasounds and still land here as de novo.. Sad to say I've been having yearly work ups for 30 years due to family hx of breast cancer, not metastatic breast cancer... I did genetic testing 5 years before my de novo dx . Nothing clinically significant.

    Throughout the years I had several biopsies and no cancer. Fibrocystic breast disease. Close monitoring every 6 months. So I did. In February 2019, my mammography and ultrasound was clear. In June, I noticed my nipple was slightly retracting. So instead of going for my scheduled imaging in August, I went in July. Suspicious area, needs biopsied near nipple. Bam, IDC, and then surgery was scheduled in August, for a lumpectomy. stage 2b.. Before going for chemo, the facility mandates a PET scan. Bam, Stage IV, small area in the spine.. Hence my whole treatment plan changed...to endocrine/targeted therapy.

    In retrospect, I look back to determine if something was missed. I had some back pain. Funny enough I blamed it on needing a new mattress. So I guess shit happens, no blame, it just "is"...

  • kbl
    kbl Member Posts: 2,775
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    Thank you for your story, Tinkerbell107.

    Unbelievable how you were with making sure you were looking for things all those years and it was still missed. I hope your treatment is going well.


  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Thanks KBL. Just wanted to share to folks no self blame. After several months when I went back to my BS for follow-up, she scratched her head, and said maybe we should of done annual MRIs. Hindsight is 50/50. However for folks with extremely dense tissue, this should be considered.....

  • FosterKittenMum
    FosterKittenMum Member Posts: 10
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    I was diagnosed at age 51 de novo, occult.
    I had no lump and no symptoms until I experienced intractable back pain and massive muscle cramping. Went for CT scan which showed extensive bone mets throughout the whole spine, some ribs, sternum, R humerus and pelvis. Also showed some mediastinal nodes and numerous spots on the liver ( which turned out to be cysts). I had a clean 3D mammo, my breasts are not dense. The ultrasound was also clean apart from one visible lymph node under the arm. This node was not palpable. My bloodwork was also completely normal apart from tumour markers which were 1894. They biopsied the node which showed gave them the breast cancer diagnosis. They were going to leave it at this, but I wanted further information so I paid for a MRI Which showed a small 1.7 x .5 mass with EIC ( extensive intraductal component) of nearly 6cm. I have no family history and no predisposing factors and led a healthy lifestyle. There was nothing I could have pinpointed earlier to head this off sooner.

    Almost three years down the track and I am doing extremely well. NEAD for at least two years. They only ever biopsied the one node, they didn’t do a breast biopsy or a bone biopsy. Mastectomy was never offered, they didn’t believe it would be of any benefit. And I’m very glad of this because the last thing I needed at the time was surgery And the risk of lymphoedema was going to be pretty high. The treatment started working fairly well straight away, the day before I went in for chemo I had developed a lump in my neck and by the second treatment of chemo this had disappeared. So knew that it was working straight away. Tumour markers had dropped and have stayed in the normal range ever since. My latest lot of scans have shown that all my lesions are now sclerotic, not lytic, the lesion in the right humerus has gone and the lesions in the ribs and sternum don’t show any more. All nodes have disappeared and everything is stable.

    However I do have significant damage to my spine I have at least five crush fractures and numerous end plate fractures from C4 down to about L4. I have three numb fingers on my R arm from damage to C6 and my R arm has strong involuntary muscle twitching on extension. I lead a relatively normal life, infusions every three weeks, scans everything six months, heart scans every 3 months. I look after my elderly mum, my two teenage children, a husband 😆and a whole heap of neonate foster kittens.🐈

    What could’ve I done to prevent this? Absolutely nothing is the answer. I had no lumps, no symptoms, a normal 3D mammogram a normal ultrasound and normal bloodwork. There is no reason for me to have got this no explanation it just happens.Interestingly enough I have always had a very good immune system very rarely sick and always had a good immune response to immunisations. I actually believe my immune system did a fabulous job of keeping this in check for so long. There is a large component almost 6 cm of disease that is introductal so it must have been growing there for quite awhile before it managed to break through. I am not totally convinced that developing cancer means that you’re immune system is completely at fault.

  • kbl
    kbl Member Posts: 2,775
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    Tinkerbell, I had an breast MRI after my diagnosis. No cancer found. That's what's so hard. Scans show nothing for me.

    FosterKittenMum, it's amazing the stories I'm hearing. Thank you. You too have quite the story. I'm so glad you're doing so well with the treatment, except for the pain.

    I think my biggest unknown is how long the cancer has been in my body for it to have spread to my stomach. As I see, almost everyone that's responded has it in their bones. I am supposed to have a lumbar and pelvic MRI on Tuesday to see if what they thought way back in 2013 was cancer in my bone marrow has changed any since my last scan in 2016. I have to have it preapproved by my insurance company, and I'm still waiting to hear back. Insurance companies are annoying.

    One more thing I'm noticing in all of the responses I've gotten, Candy is the only other one besides me who has ILC. I'm learning a lot from your stories, and I really do appreciate all of you for sharing.

  • olma61
    olma61 Member Posts: 1,025
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    more on the self blame question — when I first was referred for the breast biopsy, I resolved not to beat myself up for not getting my yearly mammograms. I had made a conscious choice not to do so and I had to be ok with the decision I had made

    Part of my reasoning for not getting them — I felt that too much radiation exposure was risky, lol...I laugh when I say that now, but seriously. And also, the idea that too many DCIS cases were being detected and treated unnecessarily. If I had gone for yearly mammos, I would probably be thinking the radiation contributed to the cancer. ¯\_(ツ)_/¯

    then I started reading and discovering the women who faithfully had their yearly screening and the cancer was missed and they wound up at a later stage, as some of you have shared here. I also have dense breasts so I may well have wound up in the same boat I am in now, regardless.

    There is really no winning the game of what if. Better to keep myself focused on getting through treatment and enjoying the good time that remains while I’m here.


  • divinemrsm
    divinemrsm Member Posts: 6,154
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    KBL, I, too, was diagnosed with ilc. I only noticed now that you mention it that I don’t have that included in my signature line below. Honestly, after almost ten years living with mbc, the ilc part isn’t something I think about very often.



  • kbl
    kbl Member Posts: 2,775
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    Olma61, I agree with not thinking about the what if. It would have never showed up for me anyway. When they first told me, I thought, oh, no, I hadn’t had a mammogram in a few years, but they have never found anything in my breast, so it wouldn’t have mattered.

    DivineMrsM, thank you for letting me know. I had looked at your diagnosis and didn’t see it. I’m really glad you’re doing well almost ten years out. That’s great to know that people are living with this disease more as what they say is a chronic illness. I hope you have many more years ahead.

  • olma61
    olma61 Member Posts: 1,025
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    JavaJana, hugs, so sorry to hear about your mom!

    Yes, research has come so far in the past fifty yearsand treatment is better than ever. Definitely much to be grateful for, even in Stage IV.

  • kbl
    kbl Member Posts: 2,775
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    JavaJana, I am also sorry about your mom. Treatment has come a long way and still has a long way to go, but I’m grateful for being able to take pills as a first line of treatment.

  • divinemrsm
    divinemrsm Member Posts: 6,154
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    Jana, that’s a heartbreaking story about your mom. Age 26! For her to have children and so much life ahead of her cut short. That is so tragic! 1971 is really not that long ago, either, when you think about it. Not only were the radical mastectomy and cobalt treatments barbaric, but it was a time when “breast cancer” was whispered about. We’ve come a long way, but still have a ways to go.


  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Since I was diagnosed with de novo in August 2019, the BS recommends annual mammogram and ultrasound. Is this standard practice? I receive Pet scans every 4 months. Just wondering if the mammograms and ultrasounds are going overboard. In my situation it's rather apparent nothing showed up on mammograms and ultrasounds until my nipple retracted after having a clear scan 3 months prior to dx.

    i have my appointment next month. Just curious if folks continue with annual mammograms/ultrasounds.

    Thanks ladies

  • candy-678
    candy-678 Member Posts: 4,128
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    KBL- Mine said "lobular like features" on my biopsy report. Hum??? Lobular like? My breast surgeon referred to it as "lobular breast cancer" when she gave me the news that I had cancer. But, neither MO- I have had 2, 1 moved from the area and the current 1 I have now-- neither have discussed the ramifications of "lobular". My liver met was 8cm in size and I assume was 1 large mass. And I have the bone mets. I may have other issues in my future, but the lobular doesn't seem to be a factor for me right now.

  • kbl
    kbl Member Posts: 2,775
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    Tinkerbell, I wonder the same thing. All three tests, mammo, ultrasound, and MRI, didn’t show anything for me, so why bother? I got something in the mail as well that it’s time to have a mammogram. I’m not sure if I will or not. I’ll talk to doc at next appointment. Why waste my time? I get where you’re coming from.

    Candy, thank you for clarifying. It’s all so confusing when they aren’t even sure what it is. It’s the same treatment either way when we are hormone positive, so I’m not sure if it matters, but I like to know what is going on.

  • iwrite
    iwrite Member Posts: 746
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    Another de novo ILC member here. DX Stage IV on November 1, 2015 with mets to innumerable bones at age 63. Annual mammograms and cystic lumps for three decades. This time it was one small marble sized lump. After a biopsy I had appointments with a surgeon and someone to do reconstruction. They ordered a breast MRI and pelvic CT to identify blood vessels that could be reattached and tissue for the replacement/ (Tummy tuck had some appeal.) The MRI showed a spider web of cancer across sternum into both breasts and bone mets in the hip and pelvis. Follow up scan showed bone mets everywhere. That took surgery off the table and I started on Ibrance and Letrozole. Still taking it at the lowest dose with a two week off/two week on schedule.I've been NEAD for more than four years.

    I fully expected to get breast cancer. Even though my genetic tests didn't show it, every female for three generations on my mother's side had had post menopausal breast cancer to some degree. I thought about preventative mastectomy for at least ten years and just couldn't do it. Maybe it would have made a difference.

    I start cycle 56 today. Lately my labs have shown changes that are concerning, but that's happened before and they settled back into NEAD land.

    I've learned quite a bit about ILC and treatment protocols here, including what to expect throughout this DX. Thanks for starting this thread!

  • GlobalGal
    GlobalGal Member Posts: 29
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    Mine started with a thyroidectomy in March 2019 for papillary thyroid cancer. My 3 central neck lymph nodes were also removed, but instead of thyroid cancer, they found breast cancer, which at that level is considered metastatic. However, despite every test under the sun, no breast cancer tumor was found and, thankfully, no other mets (so far).

    I'm somewhat unsure how to classify myself in the world of breast cancer (my oncologist and breast surgeon were very vague, and my ENT surgeon was totally freaked out)...

    de novo

    stage IV

    synchronous papillary thyroid cancer and breast cancer

    occult as far as the breast cancer goes

    "possibly lobular" (pathologists and breast cancer surgeon debated for weeks, but then put nothing in writing)

    ER, PR positive, but not enough tissue for FISH results

    hereditary cancer tests (Color) showed no hereditary cancer

    Sometimes I wonder if I am riddled with unseen breast cancer and other times I wonder if my cancer just up and disappeared (spontaneous regression). When feeling paranoid, I wonder if my neck lymph nodes got switched with some other patient's lymph nodes on the day of surgery and this whole cancer experience (and ongoing treatment) has been a terrible mistake:

    "The lab says it's cancer, but sometimes the lab is wrong" (New York Times)

    https://www.nytimes.com/2017/06/26/health/the-lab-...

    Note: I did try to have the surgical tissue matched to my DNA, but again there was not enough tissue (or so claims my HMO).

    By the way, I've never missed an annual mammogram (in over 16 years).

    So, only time will solve this mystery (or perhaps not).

  • sondraf
    sondraf Member Posts: 1,616
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    Man, I never even MADE it to the mammogram every year stage. When I turned 40 I remember thinking "now I know I am supposed to start mammograms, but can I get one if the health service here doesn't start them before 50?" And I set it aside and didn't follow up cause, what were the odds? I turned 41, same thought and later in the year noticed on my private health insurance I could add a mammogram to this yearly check up offer if I wanted to. So I did that and then... set it aside and 9 months later was diagnosed.

    However, I think on the flip side that had I been staged at IIIA-C or whatever that I could have quite conceivably had a rough time with the chemo and may have had long lasting impacts on the heart that would have left me alive for longer but in a less than optimal body/living situation. We may not have much cancer in my family (just the one melanoma case that had a very clear origination) but hot damn do we have heart problems.

    Sometimes I think its almost easier to have a Stage IV diagnosis than have to live with all the potential treatment repercussions AND the hanging sword of it coming back. Maybe I've just come to terms with it all by now. No system is perfect and there will always be failure, even if its at .0001%. Most of us seem to have fallen into that tiny, tiny gap. Its like in an airplane crash where its never caused by just one failure, its a chain of small failures and incidents, some happening years before, that ultimately line up to cause one very big accident.

    Re:mammograms - I was told that as I get the CT every three months that would pick up anything new and/or local breast tumor growth.