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Cancer not detected in Breast until Metastasized to Bones?

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charlierun
charlierun Member Posts: 17

Hi everyone, I went for a walk with a nurse that worked in oncology for many years and she mentioned that a friend had discovered breast cancer which had metastasized to her arm and it was never located in the breast initially! I also read in some of these forums that once cancer had metastasized to either bones or elsewhere it was detected but actually never discovered earlier in the breast tissue. So am I to understand that sometimes the original cancer site in the breast is not always found? I have a BRCA2 mutation which I just discovered two years ago and have been on surveillance every six months. But this is concerning if in fact surveillance ie. a MRI will miss breast cancer and that cancer can metastasize from the breast despite all the screening undetected? I feel this is an important point to become educated on as it would guide me on making a decision as whether to continue with surveillance or do the prophylactic mastectomy.

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  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2021
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    Charlierun, yes, this can happen. Approximately 0.3% - 1% of breast cancers are occult breast cancers, where breast cancer is found in the nodes or the bones or somewhere else in the body, but never found in the breast. The presence of breast cancer in the nodes would be most common, and this is not a metastatic (i.e. Stage IV) cancer. I don't know what percent of occult breast cancers are metastatic upon presentation, but overall only 5%-6% of all breast cancers are metastatic at time of diagnosis. So the percent that are both occult and metastatic would probably be a fairly small percent of the 0.3% - 1% that are occult.


  • moth
    moth Member Posts: 3,293
    edited June 2021
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    I think the issue the nurse was describing is occult breast cancer. It is possible to develop metastatic breast cancer and never have a tumor in the breast. My aunt had this type. If you google for this phrase you will find articles on it.

    So it's not that the MRI or anything else would miss the cancer. It's that the cancer would not really develop to anything detectable in the breast tissue.

    And this whole thing is why prophylactic BMX for BRCA mutation doesn't reduce risk to zero. It's still possible to develop metastatic breast cancer.

  • charlierun
    charlierun Member Posts: 17
    edited June 2021
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    Hi Bessie and moth, Thank you both for responding to my post as I had no idea about occult breast cancer. I have learned so much from reading the various forums in regards to what the impact breast cancer can have , it’s bloody awful! At the same time, I have the upmost respect for the women here who take the time to educate people like myself who have limited awareness of what a cancer diagnosis really means. When I first learned of my BRCA2 mutation status, the risk of breast cancer was presented in such a way that implied it’s slow growing , easily detected with increased surveillance especially with MRI, rather a sanitized version of what could happen with a cancer diagnosis. I suspect the surgical oncologist was responding to my angst about how difficult this decision is to make regarding prophylactic mastectomy vs surveillance and was trying to reassure me. They are clearly no guarantees no matter which decision I make, that there are risks of complications with either choice.

  • sondraf
    sondraf Member Posts: 1,609
    edited June 2021
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    I'd like to point out too that there is the assumption that BRCA positivity means you are guaranteed to get breast cancer. The odds are MUCH higher, but they aren't 100% either. For younger pre-menopausal women where the cancer may develop as triple negative or fast-growing, mastectomy may be the right choice. Older post-menopausal women, however, yes, the tumors do tend to be slower growing, lower grade, etc. Its no guarantee of course, but there are no guarantees in BC.

    Before you were diagnosed as BRCA2+ you were already in age-based screening for some time, right? Had you not been tested for BRCA you would still be in age-based screening and anything that would develop would be caught in that protocol too, and likely at an early enough stage where it would be limited interventions needed. You would be treated and go on your merry way, not worrying about things like occult bc, or remote metastases right off the bat. The additional MRI screening gives you a better shot at catching it even earlier.

    My point is that while making this decision is really difficult, would you have chosen to do a mastectomy in general had you not known about the BRCA? Probably not and no surgeon would have done it. No, you would have still gone to yearly mammograms where any slow growing cancer or, hell, a fast growing cancer, would have likely been caught. Now you are in the increased risk category but you get an extra two screenings a year using a more targeted, specialist protocol. Removing the breasts altogether won't solve the cancer risk entirely and could make it difficult to see amongst scar tissue. At some point you need to step back and consider you may not ever develop cancer and would enhanced screening be enough to manage your risk profile rather than more invasive options.



  • GlobalGal
    GlobalGal Member Posts: 29
    edited June 2021
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    Dear Charlierun,

    I am one of those rare patients with occult, metastatic breast cancer with no evidence found in my breasts on mammograms, ultrasounds, MRIs, biopsies, or 4 PET scans.

    Breast cancer, however, was found in 3 of my neck's central lymph nodes following a thyroidectomy for papillary thyroid cancer (so, two synchronous primary cancers).

    By the way, genetic testing (Color Genomics) showed NO inherited cancer mutations.

    Currently, I am still NED (no evidence of disease).

    GlobalGal

  • charlierun
    charlierun Member Posts: 17
    edited June 2021
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    Hi SondraF, Thank you for your input, you have pointed out why this decision is so incredibly hard to make. I am 67, had my ovaries removed last year but have stalled with this next decision regarding the prophylactic mastectomy. I am from Canada, Alberta to be precise, and I have seen several physicians on this journey, the majority have told me ,yes cancer is slow-growing and more easily treated. However the one oncologist I have spoken with seemed relieved when I indicated that I would probably go with the prophylactic mastectomy with reconstruction. I was told it’s not a matter of “if I get breast cancer, but when.” Obviously it is my decision to make, and it’s incredibly challenging to weigh the pros and cons of either choice. It has been valuable to learn from people on these forums re: what breast cancer looks like feels like and especially the consequences of chemotherapy. I am curious as to your experience living in the UK, if you’re aware of what the trend has been in regards to surveillance versus mastectomy in high-risk people.





  • charlierun
    charlierun Member Posts: 17
    edited June 2021
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    Hi GlobalGal, I am thrilled for you that you are showing no further evidence of disease. I would never have known it was possible to have something like occult , metastatic breast cancer. You obviously were fully investigated to detect breast cancer and it must’ve been quite a shock for you. Breast cancer really is incredibly complicated, I hope they continue to do lots of research to help us women out as the prevalence is so high.I sincerely wish you the best , and thanks for responding to my post.

  • LivinLife
    LivinLife Member Posts: 301
    edited June 2021
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    You opened my eyes Charlierun! I had no idea this was even possible!! Thanks for informing those of us who didn't know about this....

  • DiveCat
    DiveCat Member Posts: 290
    edited June 2021
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    Charlierun,

    I just wanted to reach out as I am in Alberta too. I had a prophylactic bilateral mastectomy in 2014 due to hereditary risk. I was 34 at time.

    No known mutations (through testing of myself, I am an uninformed negative) but a strong family history of pre-menopausal breast cancer led to me having at least three risk assessments from generic counselors of 40% lifetime risk and channeling into high risk screening program etc.

    Definitely diagnosis and treatment has changed a lot over the decades from when my late grandmother was diagnosed but seeing my mother go through it cemented my own choice. Not an occult case but despite ongoing regular screening she was already Stage III when diagnosed with ILC (just shy of a 5cm tumour and extensive node involvement). She had metastatic recurrence a few years later while still on AIs (around time I had my PBMX) and died just before Christmas 2016, around 10 years after her original DX.

    “Early" means something very different to the medical experts than it does to a layperson. I don't like the terminology for that very reason as it seems to lead to a lot of misunderstandings. “Early" does not mean you don't have node involvement. “Early" does not mean you don't have significant treatment ahead of you. “Early" does not mean you may not end up metastatic. “Early" does not mean it won't be aggressive. Of course it can still end up “good news" for breast cancer as good as can be but it does not guarantee “cure". My mother was told she was “early stage" until the pathology after surgery found out extent of her node involvement and she was bumped to Stage III.

    The Canadian Cancer Society describes early stage breast cancer as:

    Early stage breast cancer – The tumour is smaller than 5 cm and the cancer has not spread to more than 3 lymph nodes. It includes stages 1A, 1B and 2A.


    Don't get me started on the misunderstanding and confusion around survival rates.

    I would say “overall" breast cancers are slow growing - generally the ones that are post menopausal may be for example and most diagnosis overall are in post menopausal women. Others are not. Breast cancer is not just “one disease" so there is not a one rule for all. I have seen several women I met through hereditary community be diagnosed and have very aggressive cancers that were already having significant local spread to nodes or beyond by time of diagnosis though they had just been screened with no evidence of disease ~year before. There is just no way that can be predicted ahead of time though.


    Worse to me is just now sneaky it can be. ILC, which my mother had, is very sneaky on mammogram screenings for example. She had a negative mammogram only a few months before she found a lump, and even then it took MRI to actually find it.


    It's a very personal choice but I wanted to increase chances that I would achieve what other women in my family hadn't - I would see my 50th birthday still without a breast cancer diagnosis, and I would live to see my 60th. I am very comfortable with my choice and have no regrets about it. It was a huge relief for many reasons, including from higher risk screening and the anxiety that can come with that for some (including me).


    I am aware my risks of BC are not 0%, they can't ever guarantee removal of all breast tissue and like you now know, there is also a small risk of occult cancer. I am actually familiar with someone in the hereditary community who had such a diagnosis following a PBMX. However undoubtedly my risk is greatly reduced. To me it was the right choice to know that even if I still get BC, I will feel satisfied I did what I could. If I don't get BC, I will never know if I would have got it if I had not had my surgery but I am okay with that too.

    My younger sister also had a prophylactic bilateral mastectomy a couple years ago, at 33. Very happy with her decision too.


    Again, it is all personal choice. My risk tolerance was a lot lower based on my family experience and outcomes than it may be for someone else with even a known mutation but less family history. I have met BRCA+ women who found out through for example 23andMe but have no actually family experience with breast cancer - could be something that carried along male side (who can still get BC but even as BRCA+ their risk is still lower) or have a more “positive outcome” with it such as an aunt or mother who has had no recurrence after decades and have a very different approach than me who has no known mutation but a lot of negative family experiences

  • kbl
    kbl Member Posts: 2,770
    edited June 2021
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    Charlierun, I also have occult de novo lobular. My story is long, and you can look me up to find some of my posts. I will tell you the only thing that works to see some of my cancer are spinal MRIs. To find my stomach mets, I had to have a biopsy.

    I just posted about a clinical trial I did with the recently FDA approved FES PET scan. I finally have an imaging mode that detects my cancer in my stomach and all the bones. I also found I have lymph node involvement in my right armpit that I knew nothing about. It also found no cancer in my breast.

    I have ILC, and my oldest brother was recently diagnosed with IDC. We both had genetic testing, and neither of us had a genetic link.

  • charlierun
    charlierun Member Posts: 17
    edited June 2021
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    Hi DiveCat, Wow, your post was so helpful to me in gaining a better understanding of “catching breast cancer early” and the various scenarios. I had been feeling concerned about the idea presented to me by some physicians that breast cancer caught in an early stage had a predictable, treatable outcome. If that was the case why would anyone undergo a prophylactic mastectomy? Your account of your decision making process was enlightening, and I can understand why you went ahead with the surgery. I have learned so much from you and others on these forums, especially about how breast cancer is so unpredictable, sneaky, i.e. occult breast cancer!

    I will resist the temptation to inquire about the confusion around survival rates, but do you have a resource you can recommend on that topic? I have not done much reading on the Canadian Breast Cancer site ,so I plan to check that out. From one Albertan to another, thanks, and if you entered the free lottery to win a million dollars, I wish you good luck.


  • charlierun
    charlierun Member Posts: 17
    edited June 2021
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    KBL, Thanks for your response, like I mentioned earlier, I had never heard of this possibility of never detecting breast cancer in the actual breast but later once it has metastasized. That is good news that you have now found an imaging scan to monitor your cancer due to a clinical study. I appreciate that you shared your experience with me as it helps shape my understanding of breast cancer and that screening will not always detect it which is important to come to terms with due to my BRCA2 mutation.

  • Esther01
    Esther01 Member Posts: 229
    edited June 2021
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    You are all so inspiring to me. There is so much to comprehend and so much more we don't even know yet about bc.

    Last Thursday, I had a lumpectomy and removal of 11 lymph nodes. (I'm still in Ouch mode). Just today I was reading up on thermography (which used to be covered by insurance and may yet again in future). Apparently, thermography is very sensitive (can detect cancer in the body up to 10 years before it is even formed into something other methods would be able to detect), and I read that an integrative MD near me (not my Doctor but another in town) does full body thermography which I am definitely going to start doing annually at six month intervals with my ultrasounds. According to the article below, thermographies got a bad rap early on and began to be seen as a threat to mammograms which is unfortunate because they are way more supersensitive and that's what I personally would want, early advance notice so I could start working on changing my cells.

    Here is a great explanation about thermography and how it's useful for early, early advance detection: https://www.drkaslow.com/full-body-thermography

    I also now take systemic enzymes daily. Here's how they work on beating up cancer cells and washing away cellular debris: https://drjockers.com/systemic-enzymes-cancer/

    I don't have the BRCA gene but I do have the Chek2 gene, so an increased risk; I decided to start beefing up my cellular health big time so my body will be hostile to forming another cancer. In six months I have changed my diet (very low carbs, rare sugar, rare alcohol), systemic enzymes every day (a.m. and p.m. on an empty stomach to wash out cellular debris, fibrin, scar tissue and lower inflammation), digestive enzymes (my doctor thinks this is why I got the bc. My blood type doesn't digest well, which means bad cells keep proliferating in my body and are never broken down, so now I have enough enzymes in my stomach to break everything down and get the nutrients from my food), water (half my body weight in ounces) and lifestyle (I stopped eating late, exercising more, reducing stress and now do intermittent fasting) so my body will be hostile to forming another cancer. I also brought up my Vitamin D to 85 and Iodine (I was deficient). I did high dose IV vitamin C throughout my cancer treatment (sounded super scary until I read all the studies, my doctor is published in this area and has 40 years of experience with its benefit and safety for cancer patients). Oh, and I also started on Juice Plus (powdered fruits and veggies).

    As scary as having a cancer gene is, I am grateful for hearing the term,epigenetics, recently which confused me until someone explained to me, the cancer risk gene is just the computer. It's what you put into it (the software) that will make it run in such a way that it can help develop healthy cells and not allow unhealthy ones to proliferate and clump together. Hoping for great programming for our cellular health! Prophylactic decisions are so personal ...

    Blessings,

    Esther


  • DiveCat
    DiveCat Member Posts: 290
    edited June 2021
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    I will resist the temptation to inquire about the confusion around survival rates, but do you have a resource you can recommend on that topic? I have not done much reading on the Canadian Breast Cancer site ,so I plan to check that out. From one Albertan to another, thanks, and if you entered the free lottery to win a million dollars, I wish you good luck.



    I sure did enter, and same to you!


    My comment is more just about their meaning, and how they are not well understood when people here things like “early screening & detection increases survival rates!". It applies with all cancers really. See https://theconversation.com/when-talking-about-cancer-screening-survival-rates-mislead-30395 and https://www.healthaffairs.org/do/10.1377/hblog20150401.046038/full/ example.

    A few years ago I stumbled on a really good image also showing how survival rates worked in a very easy to visualize way, I will try and find it.




  • charlierun
    charlierun Member Posts: 17
    edited June 2021
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    Hi Esther01, Thanks for your input, very interesting articles and I’ve never heard about thermography screening . When I was informed of my BRCA2 status , MRIs alternating with mammograms were all that were recommended along with breast exams. It was also suggested to remove my ovaries which I did a year ago. I agree that a holistic approach in preventing and dealing with cancer is necessary as there are many other risk factors aside from a genetic mutation. I am learning a lot on these forums!

  • charlierun
    charlierun Member Posts: 17
    edited June 2021
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    Hi DiveCat, Thank- You! The articles you included in your response about leadtime bias etc. were very informative. I feel far more capable in making a decision regarding surveillance or PBMX as a result of reading the shared information here and resources, especially the articles that you shared in your posts. I do extensive research and in terms of my understanding of breast cancer prior to my diagnosis of a BRCA2 mutation, I had very limited understanding of what Breast cancer was all about. This horrible, all too common cancer , is very complex, sneaky, and does not discriminate whether you are living healthy or not! I will be doing everything I can to avoid it within my power so have decided on a PBM with reconstruction knowing that thisis not a 100% risk reduction for breast cancer.