Am I wrong in feeling like I'm being ignored?
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I was diagnosed with DCIS, clear nodes in Mar 22 and underwent bilateral mastecomy on April 17. They removed a 4.5 cm mass and it is negative to any hormones and grade 3. I had SLN done as well and it came back as ITC after a second thorough review.
When I met with my rad onc before the 2nd review came back she had said that the chances of my cancer coming back is high due to the high grade and negative to hormones receptors but said I shouldn't need radiation. This was the same when I met with the med onc regarding chemo.
Now that the second review came back with ITC I feel like my body is a ticking time bomb and would like the option of after treatment.
I look at my family history with my Dad currently going through treatment for prostate cancer. He removed his prostrate in 2006, was told no after treatment were necessary as they felt confident they got everything. In 2009, cancer has spread to his bones, spine, etc.
I think of my own history of cancer is taken into account as I had Stage 3 hogkins lymphoma in 1995 and did 8 months of chemo. What are the chances of getting 2 totally un-related cancers in a lifetime? Obviously there is something in my body chemistry make-up that attracts cancer cells.
When my rad onc called me with the results of ITC she used the term that this was a 'contraversial' scenario, she did a round table with her colleagues and all voted no chemo, some voted maybe for radiation. The onc said if my tumor was hormone receptive they might give me hormone therapy but its not so they decided to no treatments at all. Just go back to my GP every 6 months for follow up. I was quite amazed that my fate was decided by others and I had no say.
I called the rad onc back and spoke to her secretary and said I would like to discuss the possibility of after treatment because I couldn't live with constantly wondering about cancer growing inside my body. Asked if I can at least get at a scan to make sure there is nothing there? Since this whole thing started I have not had one MRI or CT scan done.
Sorry this post is so long. I am at my wits end. I was told last Thursday the rad onc has already written a discharge letter 2 days before on my file even though I had expressed big concerns. -
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I do not know what ITC is either but, can you take your reports to a dif cancer center for an opinion? I think that would be my choice, find out what other centers would suggest
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I'm sorry I should have clarified...ITC is isolated tumour cells which they found after the second review. It's still considered negative as its under .2mm.
I'm trying to find out how to get a second opinion for oncologist in Canada. Most of them work for the cancer agency. -
Do you mean isolated tumor cells in the nodes?
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I'm sorry that you're going through this. Your fate is not decided by others! If you feel uncomfortable with the treatment plan you've been give, go for a second opinion . You mention ITC which I assume is IDC (invasive ductal carcinoma) and grade 3, so if I were you, I would definitely seek,that second opinion. I am not a doctor, so it is important that when you seek this second opinion, the doctor have full access to all records from your previous bout with cancer, as that can sometimes have a bearing on new treatment. Best of luck to you.
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Isolated Tumor Cells.
Nearby lymph nodes (N; based on looking at them under a microscope):
...for now, a deposit of cancer cells must contain at least 200 cells or be at least 0.2 mm across (less than 1/100 of an inch) for it to change the N stage. An area of cancer spread that is smaller than 0.2 mm (or less than 200 cells) doesn't change the stage, but is recorded with abbreviations that reflect the way the cancer spread was detected. The abbreviation "i+" means that a small number of cancer cells (called isolated tumor cells) were seen in routine stains or when a special type of staining technique, called immunohistochemistry, was used.
So ITC is considered to be node negative. When someone has ITC in combination with a diagnosis of pure DCIS, the assumption made is that the cancer cells were accidentally placed in the nodes by a surgical instrument, usually as the nodes were being removed during the SNB procedure.
I believe that there is an extra level of testing/staining that can be done on the cancer cells found in the node to confirm (as much as possible with such a tiny number of cells) that the cancer cells are DCIS cells, and not invasive cancer cells. If this can be confirmed, then there will be no question that the cells were simply accidentally placed. DCIS cancer cells cannot move beyond the milk ducts or into the nodes, so if DCIS cells are found in the nodes, they couldn't have gotten there by themselves. However if it is found that the cells are invasive cancer cells, then there is a greater concern because that would mean that there was an occult (undiscovered) invasion mixed in with the DCIS in the breast.
Allyp71, I don't actually understand why your docs would say that you are higher risk for recurrence, not after a BMX and not with a diagnosis of DCIS and ITC. From a local recurrence (in the breast area) standpoint, the one thing that would make you higher risk after a BMX is having close margins. If you don't have close margins, your recurrence risk should be in the range of 1% - 2%, regardless of the pathology of the DCIS. As for the ITC, if your doctors are confident that your diagnosis was pure DCIS and that the ITC were accidentally placed, then you have no risk of mets (i.e. distant recurrence) from this. Or at most, a very minimal risk of mets, 1% or less (assuming that they are wrong on the ITC but recognizing that in total it's less than 200 cells). Even with a diagnosis of invasive cancer, a risk this low would not usually warrant chemo.
My recommendation would be another review of your pathology - both the breast pathology and the node pathology - by a different facility. If another facility comes to the same conclusion about your diagnosis, then the treatment recommendation, i.e. no additional treatment, is appropriate.
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Allyp71, this write-up by Dr. Susan Love might make you feel more comfortable about your situation. And keep in mind that she is talking about micromets to the nodes, not ITC (which is smaller/fewer cells) and she's talking about a situation where the diagnosis was invasive cancer, and not DCIS. So your situation is considerably more favourable.
http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=7&SID=132&CID=2018&PID=0
Which province are you in? I'm confused by your comment about most oncologists in Canada working for "the cancer agency". I know that each province has a different set up but I believe that most doctors (including Oncologists) work either in independent practices and have an association with one or more local hospitals, or they may be employed by a hospital. They don't actually work for the government. They are simply paid by the government. Many of the provinces have cancer agencies and all oncologists (surgical, radiation, medical) may be part of the agency but that doesn't mean that they all work together and aren't independent of each other. When I was first diagnosed, my doctor was a surgical oncologist. I wanted a second opinion so I asked him to refer me to a breast cancer specialist (also a surgical oncologist) who worked at a different hospital. Before seeing the second doctor, his office requested that all my films and pathololgy slides be sent over so that their breast cancer radiologist and pathology could go over everything. So in this way I got a second opinion not just from another surgeon, but I also had all my films and slides reread. I would think that you can do the same thing but if you are not sure how to approach this, I'd suggest that you post your question in the Canadian forum on this board. Someone else from your province is bound to answer and be able to offer advice.
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Thank you so much Bessie for the info. I live in BC and most oncologists work at the Cancer agency so I'm trying to see if there is a way to get a second opinion somehow. I did post on the Canadian thread too.
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