Very frustrated with this part of BC

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Dhanno
Dhanno Member Posts: 104
edited July 2018 in Just Diagnosed

Hi everyone I have this confusion .I have seen many posts of women who were stage 1 with no lymph node involvement but their cancer came back as stage 4 .My question is that I am sure all of them were getting regularly monitored with Mammograms Ultrasound and MRI may be every six months .Then how is it possible that when discovered the cancer is sitting at stage 4 ? .Recurrence I understand happen to but getting diagnosed at stage 4 when one is getting regular check up is baffling me . The cancer has gone through stage 1 ,2 and 3 before reaching stage 4 so why is the MRI or any other diagnostic tool not able to pick it up .Why any woman who has taken so much precaution after going through BC has to repeat the ordeal with a more severe diagnosis ?




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  • moth
    moth Member Posts: 4,800
    edited July 2018

    Hi, I'm cutting and pasting something I posted in another thread a few weeks ago. We don't talk about this a whole lot but the thing is, we're not actually sure about some things. You can google these terms + breast cancer theories to read more about them. Fisher's theory is sort of depressing imo but it explains the phenomenon you're talking about. Fisher's theory also gave us lumpectomies because it rejected the whole you must get rid of a huge swathe of tissue at the source premise...

    "You may also be interested in reading a bit about the theories of breast cancer - theories is what we have because we don't actually know.

    The "Halstead theory" is that it starts in a local area and then has the potential to seed and spread throughout the body.

    The "Fisher theory" is that breast cancer is systemic and that right at the beginning, it either is metastatic or not, and that tumors which will metastasize will do so even before diagnosis and before clinical signs of metastases.

    Then there's the Spectrum theory which says it's a bit of both theories. As research continues, I'm sure we will continue to gain more understanding of how and why certain cancers recur and others don't. "

  • Jons_girl
    Jons_girl Member Posts: 696
    edited July 2018

    Where are you reading that Dhanno? I didn't even know stage 1 could return as stage 4. How is that possible, unless the tumor was very high grade/proliferation rate was high? Then I could see yes it could return as more aggressive since it was aggressive to begin with.

    Can you maybe post what you read? tami

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2018

    Dhanno - it is a question many oncologists simply can’t answer because they admittedly don’t know why some women get BC and others don’t.

    The sad commentary is you can do everything “right” and still get the beast. Go figure. There are no guarantees even if you live a healthy life.

    I have a friend who had a recurrence a few years ago. She was 2 years out. Granted she was not Stage 1 at the onset but she had the surgeries and both chemo and radiation and took Tamoxifen. They found the recurrence because her tumor markers kept rising.

    Needless to say she is devastated and so are we. However, she did have an aggressive cancer to begin with. Idk whether she had the Oncotype test and if she did what her score was. I did and mine was 11- 8% chance of recurrence.

    It is scary to jump from early stage to metastatic cancer. It’s unfathomable it could happen so fast.

    I had Stage 1b, Grade 1 IDC 7 years ago. So far, so good.

    We all have that fear factor. As time goes by though you worry a little less.

    With all we have available to monitor this disease you would think they would find the recurrence before it elevated to Stage IV. Sadly that’s not the case.

    We can take comfort in we are doing everything we can we just can’t control whether a recurrence occurs.

    Keep the faith.

    Diane





  • Dhanno
    Dhanno Member Posts: 104
    edited July 2018

    Thanks edwards750 you explained everything so beautifully .

    Hi moth thank you so much for taking effort in helping us understand few things about this diagnosis which I guess even our doctors will also not reveal .


  • moth
    moth Member Posts: 4,800
    edited July 2018

    Jons_girl - when you look at the 5,10,15 year rates, when people are listed to have died, it's metastatic stage 4 that they've died from.

    So you can put in stage 1 stats into a calculator like predict and see how many people eventually die of it. Even Grade 1 tumors can come back. http://www.predict.nhs.uk/predict_v2.1/tool

    Also, I love this article as a whole but I DETEST the first line "Although more than 90% of patients with breast cancer have early stage disease at diagnosis, about 25% will eventually die of distant metastasis"

    Lifestyle modifications for patients with breast cancer to improve prognosis and optimize overall health http://www.cmaj.ca/content/cmaj/189/7/E268.full.pd...


  • illimae
    illimae Member Posts: 5,710
    edited July 2018

    I don’t recall where I read it but there was something recently posted about how cells from some tumors can spread out in other ways bypassing the lymph system entirely.

    I was diagnosed stage IV de novo but was shocked since the lump appeared overnight and I reacted so fast, having all the tests and results in less than two weeks. Sadly, I was naive to think that an immediate response to the lump = early detection.

    Oh well, we do what we can and the rest is luck, faith, whatever...

  • Dhanno
    Dhanno Member Posts: 104
    edited July 2018

    Hi moth Thanks again for adding information

    Yes lifestyle does matter. When I was given my diagnosis I surprisingly did not feel shocked .I had taken my health for granted in last 5 years .From the outside I looked slim but I was leading a sedentary lifestyle .Since I do not tend to put on weight fast I never cared to watch what I was putting in my mouth .I am 46 years old .I will now be telling women of younger generation in my family that moment they hit 40 years they are heading to peri menopause and maintaining weight and doing exercise will cut their risk to half . No one in my family had Breast cancer so I never had mammograms done .This was my first mammogram and it was caught .

  • Icietla
    Icietla Member Posts: 1,265
    edited July 2018

    Not all of it is so readily capable of detection by the usual means.

    "BSGI has the highest sensitivity for the detection of invasive lobular carcinoma with a sensitivity of 93%, whereas mammography, sonography, and MRI showed sensitivities of 79%, 68%, and 83%, respectively."

    Source: https://www.ajronline.org/doi/10.2214/AJR.07.3827

  • Dhanno
    Dhanno Member Posts: 104
    edited July 2018

    Thank you illimae

    You exactly got the answer to my question for which I had been scratching my head . The cancer is bypassing the lymphatic system other wise there is no way it cannot be caught early by the diagnostic tools .

  • Beatmon
    Beatmon Member Posts: 1,562
    edited July 2018

    Dhanno: part of the problem in your questioning stage 1 to then stage 4....is that many women have mastectomy and it spreads via the bloodstream. There are no breasts to mammo, no insurance will pay for studies unless you have symptoms or increase in tumor markers. For women that had lumpectomy and radiation, it does not necessarily mean it shows any growth in the breast but shows up in the bones or organs. They don’t scan for our peace of mind. I would have risked the radiation if I could have had ct scans after mastectomy. My lung mets were found accidentally while looking for infection in implant

  • Dhanno
    Dhanno Member Posts: 104
    edited July 2018

    Hi Beatmon I had seen one of your post in a recent thread that drew my attention to this question .I cant tell you how happy I am to see your reply . Even I am going to have mastectomy very soon . I am going through the exact thoughts which you penned in your reply .I tried so hard to save my breast for the same reasons but failed .

    It was one your posts Beatmon that I read and it made me question the whole line of treatment of BC . Yesterday I had an appointment with radiation oncologist .I even asked her if radiation can take care of residual DCIS then I am happy to take a chance .But her response was not encouraging .I will now go for mastectomy as I do not have a choice .I know one thing for sure that mastectomy is not going to be my insurance for future cancer so I am surrendering to God .

    I am so happy that you came and shared your feelings .Thanks so much

  • carmstr835
    carmstr835 Member Posts: 388
    edited July 2018

    Cancer, in my humble opinion is a metabolic disease. It is also the luck of the draw, or lack of luck. Our DNA replicates millions of times in our life times, the older we get, the more injurious we are to our bodies, the more replications to our cells. With all those replications, there is bound to be mistakes, or mutations as they are called. Most of the time those mistakes die, but when the mistake is involving a metabolic issue or fails to engage for some reason in cell death, we have cancer. Those cells grow out of control, or could, if activated. So even if you do everything right, you can still get cancer.

    As far as it metastasizing, I believe that cells slough off and settle within the body and sit silent, I also believe inflammation triggers a sleeping cancer cell to grow. Lots of things cause inflammation. I also believe that biopsies can also release cells and cause inflammation. I know everyone gets biosies and that most medical professionals do not believe biopsies cause spreading of cancer, so believe what you want. I am pretty sure my cancer was spread to my lymph nodes after my needle core biopsy. It grew to 2.6cm within 9 days and burst the lymph node and prior to the biopsy, there was no evidence it was in my lymph nodes.

    What I am doing to limit my possibility of my bilateral breast cancer from metastasizing to stage 4 is, I limit my sugar and carb intake, I fast once a month for a week, only water and black coffee. The study I read was from Dr. Longo of California. Any surgery I have now, I insist on ketorolac preincision, it is an anti inflammatory. There is a study here on our site regarding those Drs. and the studies regarding ketorolac. I have had a port placed as well as bilateral DIEP and my surgeons have accommodated me. I just wish I had known about this before my bilateral mastectomy.

    I don't know if what I am doing is working, but I believe it does and I have had several reasons to believe I was a high risk for stage 4 with lesions found on my liver, adrenals and lungs. My Drs have no idea what my lung lesions were in my upper right lung, both lesions attached to blood vessels that disappeared after 6 months. My liver and adrenal lesion are assumed to be cysts and adipose tissue. But they keep scanning them, with no change.


  • Jons_girl
    Jons_girl Member Posts: 696
    edited July 2018

    I have started doing some intermittent fasting daily. I want to fast for a whole week but for now that isn't happening! I do want to do a periodic fast that is longer though. My body actually feels good when I don't eat so much. Less inflammation and just overall I feel better. Can't explain it.

    Prior to my breast cancer, I was almost 100% vegan of 20 yrs. Eating very little sugar. No alcohol, no smoking, no drugs. I have been now cutting most refined foods and eating more plant based than I was before. Limiting soy as well to very little once in a while. I have always been a pretty active person we live on a farm and I stay very busy. So even how I was prior to breast cancer, I still got it. I was pretty shocked when I got the diagnosis. I thought I was eating healthy and had a really healthy lifestyle. So I have reexamined my life post cancer and added intermittent fasting which I believe is helping my body heal and it is helping me take off a few lbs as well. Not a bad thing!

    Someone said here or on another thread diet and lifestyle can't keep you from having cancer. That may be....but it surely helps you feel better and have overall better health long term. =) We can only do what we can do.

    I chose not to have radiation or tamoxifen. My recurrence rate just didn't go down much at all doing those things. Also then if it returned I would be required to have a mastectomy which I didn't want to have. My oncologist told me he would support my decision as long as I followed up with him periodically (somewhat often). So I am doing that. Also all the potential side effects from tamoxifen....I just chose NO.

    Everyone has to make their choices. I don't think one persons choice is what all should do, everyone is so different when it comes to breast cancer diagnosis.

    Thank you for posting this thread the information has been really interesting!

    Thank you to the person who wrote me above.....interesting info!

  • Dhanno
    Dhanno Member Posts: 104
    edited July 2018

    Hi Jons_girl I fully support your decision for not taking radiation and Tamoxifen .I have read many threads here on this board who refused radiation .If you have clean wide margin then chances are you are cancer free .I spoke to the radiation oncologist last on Monday .I asked her if radiation takes care of rogue DCIS so why cant it take care of residual DCIS that is 4mm from inferior margin .The whole point of radiation is to kill DCIS then why am I being discouraged to get it after my lumpectomy (residual DCIS just 4mm from inferior margin rest all margins have wide clearance) .The doctors themselves are not very sure There are cases where cancer comes back after radiation then they blame it on the grading .




  • letsgogolf
    letsgogolf Member Posts: 263
    edited July 2018

    I have never heard of anyone with breast cancer going through all of the stages, 1 to 2, 2 to 3 and 3 to 4. I don't think it works that way. If it comes back it is usually stage 1 to 4, 2 to 4, 3 to 4 or begins at 4. In other words, it usually goes from the stage at which it was found directly to 4 if it spreads. Somebody correct me if I am wrong. I personally have never known anyone who has progressed through all of the stages.

  • Dhanno
    Dhanno Member Posts: 104
    edited July 2018

    Hi letsgogolf This is a very complex topic .I have first appointment with MO next week .Will ask him . Today is my first appointment with PS .I am not looking forward to it ,I am so fed up with the choices . My faith in God also shakes many times .But I still want to cling to that faith as it is a lonely battle and even if God is fictional I still need his support .

  • letsgogolf
    letsgogolf Member Posts: 263
    edited July 2018

    Dhanno Looks like you have a great prognosis. Grade 1 with no nodes involved. I have a feeling that this will just be a bump in the long road of your life. Best wishes!

  • WC3
    WC3 Member Posts: 1,540
    edited July 2018

    Dhanno:

    I was reading about this the other day. I won't lie. Cancer cells are intelligent little MFs and it's scary. Typically the women in question did not have a local recurrence. They had a distant recurrence which grew from micrometastasis.

    The science of cancer spread

    Key points from that article...


    • Only a small number of cells in a tumor contribute to metastasis. They are special cells.
    • They change the microenvironment through cell signaling, of the distant sites they will spread to, to make it hospitable to them possibly years before they spread. You could be two years from having a palpable mass in your breast and your lungs could have already received a phone call "Hey lungs, my babies want to move in with you someday. Can you fix the place up for them?"
    • To spread through the blood stream, they have to recruit normal cells to help them in, again through cell signaling, and have to undergo a series of changes to survive in it and evade the immune system.
    • They can go straight through red blood cells without damaging them.
    • They must get out of the blood stream within three days or they can die.
    • Once they manage to get out, they can hunker down next to the blood vessel wall and go dormate for decads.
    • In a dormate state they are often immune to chemotherapy.
    • They often remain immune to previous chemotherapy when they wake up.

    That being said, in people who's cancer was treated at an early stage only to have it reoccure as stage IV, either...

    1. They had no micrometastasis initially but treatement failed to get all of the primary cancer and they later developed it.
    2. Treatment got all of the primary cancer but they already had micrometastasis which the treatment failed to get all of.
    3. Some combination if 1 and 2.
    Of those who's cancer was treated and who never had recurrence, either...
    1. The treatment really got all of the cancer including any micro metastasis.
    2. The treatment did not get all of the micrometastasis but the cells remained dormate or suppressed or were destroyed by the immune system, or died on their own.
    The reason why reoccurance are sometimes missed until someone has a large met at a distant site is because there is not always an easy way to detect cancer as far as screening goes. Cancer often needs to have progressed for a while before causing elevated tumor markers. Only one of mine was elevated and then just barely with a 2.5cm tumor. PET/CTs expose someone to an average of 8 years worth of radiation and can only detect cancer once it's a certain size, so the risk of cancer from PET/CTs quickly exceeds the benefit of doing bi annual or even annual screenings for someone who is thought to have been successfully treated. Regular CTs are also a lot of radiation.
  • urdrago71
    urdrago71 Member Posts: 559
    edited July 2018

    WC3, I read the article and wonder if theres a study that supports how many of dx have distant recurrence at 5 plus years? I always thought it was to make it 3 years or 5 years.. but actually its 10 plus years..

  • moth
    moth Member Posts: 4,800
    edited July 2018

    urdrago - I was told that when recurrence happens is dependent in part on hormone status. TNBC, if it's going to recur, tends to happen in the first 1-3 years. On the other hand, studies show that ER+ cancer has a fairly steady rate of recurrence to 20 yrs and beyond.

  • urdrago71
    urdrago71 Member Posts: 559
    edited July 2018

    Moth, Thank you for clarifying. This makes sense with my team wanting to do lumpectomy now get rid of cancer cells and than radiation. After I heal than they will do BMX.

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited July 2018

    And the five year, ten year time frames have more to do with funding for clinical trials than actual milestones.

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