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Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer? Thank you.
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Lea, there is also something odd about that story with the surgeon wanting a wider excision and radiation after the excisional biopsy but patientnot doing it. It sounds like to me there was more on the path report than just LCIS, because that wouldn't have been suggested for only LCIS.
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Thank you MelissaDallas and Icietla for your responses to the question, "Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer?"
The link included this unfortunate account and this poster was "last seen" 2 years ago.
In 2008 I had a benign lump removed and LCIS discovered. The original surgeon was adamant that I have more tissue removed and possibly radiation, but everything I read said take Tamoxifen watch and wait. No history of cancer in my family, me very vibrant and healthy. I followed the advice of my oncologist.
After almost 5 years on Tamoxifin I had a lump rise and then disappear on that same breast. All mammo and sonograms were clear, but after a few months I noticed a slight thickening of the tissue. Biopsy showed Invasive Lobular Carcinoma. Because I'm poor and on Medicaid I was only allowed one CT scan. My new surgeon looked at the bones because that's the most likely place for spread. All clear.
Early in 2013 I underwent a double mastectomy, which was not difficult at all for me. My breast tumor was just over 2cm so I was stage II. Before chemo I enrolled in a clinical trial and they paid for an abdominal and chest CT. Wham. Two liver tumors, each over 3cm. Stage IV, quick as that.
Here's what I did not know: Lobular cancer is very difficult to detect. Mine never showed up on my scans. Even CT scans don't always show it. My clear bone scan was later updated with 4 spots of calcification after months of chemo, showing that I had small bone metastesis that had been destroyed. The surgeon said my liver tumors had been there at least two years.
So watch and wait isn't what I thought it was.
If I had a time machine I would listen to the original, old fashioned hick surgeon, and have a bilateral mastectomy right after LCIS diagnosis. It's too late for me, but I hope my story will help inform the decision of someone who is early stage. Then you can live your life, instead of fighting for it, like me.
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MelissaDallas -- I think you may be on to something there. Good catch.
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are there current stats on people who were dcis in their 70s who had lumpectomy and rads and on an AI who still met?
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Lea7777 I guess in a way I fit into that group you mentioned in your post, "Thank you MelissaDallas and Icietla for your responses to the question, "Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer?"
I was diagnosed with calcifications at my very first mammogram when I was 50. I had 22 core biopsies performed, none of which produced any samples. I saw a breast surgeon, who told me that patients in that situation go either one way or the other. Some turn malignant, some don't. She was quite casual and referred me for the usual two yearly mammograms without (i now know) adding any mention that I had calcifications. I had absolutely no idea of the significance of calcifications and duly turned up for my mammograms every two years for ten years before I became seriously ill. Because every single one of my mammograms were reported as clear, breast cancer was the last thing on my mind. By 2015 I was unable to get out of bed I was so weak. I didn't make it to my 2013 or 2015 mammograms but self examination showed nothing. My breasts appeared perfectly normal and, anyway, I was too sick to walk outside, let alone go out. Suddenly in 2016 my left breast changed shape radically so we called a lab who would take blood from me at home. My CA 15.3 report showed a result of 784 and "metastatic breast cancer". My husband organised a morning of tests for me the next day and I was wheeled from one to another. I was in a very poor state. It was obvious immediately on ultrasound that my left breast contained only a 2cm ductal tumour but the right one was a mess. It contained a lobular as well as a ductal 10cm tumour plus activity in the sentinel node yet external appearances were completely normal. I can only think that the lobular tumour was hidden and the ductal tumour was hidden by the lobular tumour. I immediately had a bilateral mastectomy with 29 lymph nodes cancerous and removed. Bone scan showed extensive mets to the bones. My entire skeletal system is covered in mets so I was staged as de novo Stage IV. The tumours were 95% to 99% hormone positive so I'm taking Ibrance and Letrozole and will be doing so for the rest of my life. Quality of life isn't great because of pain and difficulty with mobility but my health has improved radically since treatment began.
My advice to anyone who is diagnosed with calcifications? Follow up and keep following up even if your breast surgeon tells you it's unnecessary. If I'd been given the advice to have a bilateral mastectomy at the time, I certainly would have had to think hard about it but, with hindsight, I would have been healthy now with no sign of cancer in my body.
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Rosabella, the DCIS patients in this recently published study did not have Endocrine THerapy, but the report may be helpful to you anyway.
Standardized Mortality Ratios of Major Causes of Death by Age, Diagnostic Period and treatment"Importantly, the women in our study population were not treated with tamoxifen as part of DCIS treatment, because the clinical guidelines in the Netherlands do not recommend endocrine therapy for women with DCIS."
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Another for Rosabella
https://www.deepdyve.com/lp/wiley/endocrine-therapy-in-dcis-how-do-we-proceed-VazBr09oJF
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thanks icietla.
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Nice articles, Icietla. Thanks for sharing.
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Thanks for all the responses, Icietla (does that translate to here and there?) and Leapfrog.
"my health has improved radically since treatment began" - very encouraging Leapfrog. What an ordeal you have been through.
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You are welcome.
>>does that translate to here and there?<<
Yes.
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Can someone explain what this means???? Bone scans are clear but MRI detects 5 spots??? L3 and some T numbers? I am so confused? I am told they need to do a biopsy? Truthfully, I am so tired of being a human pincushion. I just don't understand anymore.... I am getting angry and tired of all this stuff. Life before this diagnosis was simple and I just don't understand. Believe me, I try to understand EVRERY DAY and it just makes NO SENSE!
Finally, I thought we were so ahead of this disease. I'm not sure what to believe anymore....
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Hi njgirll13, your report in speak that you can understand.
Your bone scan showed no uptake to suggest mets but your MRI has detected some small spots in the Lumbar (L3.....down at the base of your spin) and in the Thorasic (T numbers.......the area in your mid spine from about your shoulder down). They are suggesting a biopsy to either confirm or rule out mets. The area with the prefix 'C' is your Cerviacle spine, basically your neck.
All vertebrae are numbered so the numbers next to the letters as in L3 and T.... and C.... denote which vertebrae.
Hoping this explains things a little clearer for you.
Good luck, I hope your biopsy comes back clear and those spots just turn out to be something like arthritic changes..
Love n hugs. Chrissy
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Chrissy,
Thank you for your response. It is starting to make sense,
Love and hugs to all,
Kelli0 -
Thank you Chrissy sooooo much for starting this thread.
I don't know if this question has been posted or not, but how can they tell the difference between arthritis on a bone scan and bone mets? My fear is that they are saying it's arthritis because my cancer wasn't aggressive, but it's actually bone mets.
Another question is curiosity really. I see you Chrissy with basically the same cancer as me only yours was quite a bit bigger, how did they know you had mets? The only reason I had a bone scan done is because the ER doctor found spots on my spine on the CT scan.
{HUGS}
Cheryl
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Hi Cheryl. The Radiologist has spent a long time learning to tell the difference between mets and arthritis but basically the difference on bone scan is, the bone mets take up more of the radioactive isotope so making them far more visible on the film. At this point, unless you are in excruciating pain, I wouldn't worry too much.
I had a lot of pain and thought it was caused by the bursitis in my shoulder. It wasn't until I saw my Surgeon for my five year check up that he decided to do a bone scan to rule out mets.........unfortunately for me, they were confirmed. I have been in total remission for a long time now and as of eighteen months ago, off all medication. I obviously have a lot more to do on this earth.
I sure hope you can put this one in the closet for now and get on with the day to day events of living.
Love n hugs. Chrissy
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Chrissy that is wonderful news about your remission! Unfortunately I am in pain, but that could be arthritis as well. The spots were apparently small. I am waiting for my hospital records to be done so I can pick them up. Was suppose to have them last week. Thanks for responding, I appreciate it.
Cheryl
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Can someone explain what bone mets feel like? I have dull achy pain in my rib cage. I am also having pain in my abdomen and an abdominal CT scan was clear, so it's possible this is something not BC related, but I am on the fence what direction to go. Thinking maybe see a gastro doctor and go from there? I am TN and the first few years are when I'm likely recur or progress so I am super worried. When I asked my doctor what signs to look for, she just said "don't worry, we will be monitoring you". <sigh>.
Rebekah
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Rebekah,
This is a tough question to answer as the experience of bone met pain varies. For me the pain was not dull and moving a certain way could set it off. it also travelled around as the mets reared their ugly heads. My diagnosis came when I had a CT with contrast looking for a possible blood clot due to the "chest pain".
What side is the abdominal pain on? The right is where the liver is, of course, and I did feel tender in the right lower rib area when diagnosed with liver mets. How long have you had the pain? I think our rule here is if it doesn't go away in two weeks, go to your oncologist. Sounds as though you have already done this. Have they drawn serum tumor markers?
The best advice I can give is not to let this drop until you feel satisfied. Have you seen your PCP? You know your body and you need to persist if the pain does not resolve on it's own.
Best, MJH
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Thank you so much for your response MJH. Pain is on the left side. MO has not drawn tumor markers. I will ask about that. Perhaps a PCP visit is warranted. CT scan was of pelvis and abdomen, but did not include rib cage. I feel like I need to have that looked as well. I am so emotionally exhausted from all the treatment and tests and I worry about going down a rabbit hole, but something is definitely not "normal". I will push for more tests. Pain comes and goes and sounds like what you are describing, depending on how I am moving but I may not feel anything for a day or two and then it comes back. Will keep you posted.
Rebekah
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hi Rebekah i have rib pain from almost two years as you described.My ribs always feel sore to touch.I have complaint about it several ti.es but all times they say that this is due to radiation therapy.Soreness has not increased or decreased but it is constant.I was also concerned but i have. whole body pet/ct 2 times for different reasons so i am at peace now that it is nothing. You also had radiation then it could be because of that Radiation.Dont worry too much about that.
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May 26, 2018 04:32AM Lea7777 wrote: Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer?
I asked this of my breast surgeon and in 22 years she could not remember anyone. I will ask this of all the medical professionals I encounter going forward.
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Lea-have not heard of any cases like this, however, my experience is pretty much limited to these boards and a few personal friends.
Best, MJH
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Thank you for your response Siddhivinayak. My pain is not on my radiated side. I did see PCP on Fri and she ordered chest and bilateral x-rays, both which turned out clean. Since there has also been some pain in abdomen she referred me to gastroenterologist. She suggests I push for bone scan.
If i had mets in ribs, would an x-ray show it? I assume not always since bone scans are what MO's order.
R
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Hi Rebekah nice to hear from.Don't jump to the conclusion.It could be something else .I have sore ribs on both sides also on non-radiated side.But this pain is felt only if i press on it i.e at the ribs.Plus i have gained a lot of weight and one side of my abdomen hurts allt he time whenever i press on that concerned area in abdomen.But as i have 2 pet/ct and nothing came up.Thats why i think it could be nothing.
Yeah Bone scan are gold standard for detecting bone mets but pet/ct can also show pre mets changes.Hope to hear good from you.
Best of luck.
Sid-
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hi this is first time I've posted so not sure if I'm in the right place. Here I go. I'm 18 months after lumpectomy, chemo, radiation for lobular breast cancer. I was having hip pain so had CT scan and MRI. "Highly suspicious for bone mets lesion" turned up on my sacrum. I had a CT guided bone biopsy. Tests came back normal. Do you think this is reliable or could they just have missed the lesion? Thanks,
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Hi, Bin. I'm so sorry about your CT/MRI report and the need for a bone biopsy. As long as the bone biopsy was sent to a reputable lab, the results should be accurate. Bone is a bit harder to do a pathology on than soft tissue because some of its characteristics can be lost in the degrading (breaking down of the bone) process if not done carefully. But, that said, I have a feeling what happened to you probably is that the reading radiologist jumped to an overly aggressive conclusion ("highly suspicious for...") based on your bc dx, and that the spot is B9. Have you been having pain there, or what led you to have the CT/MRI in the first place?
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