Your opinions/ideas please
Hi All!
New here and would like your help.
My diagnosis is/was IDC, Both Hor +, Her2-, Grade 1 and with slow growth. I am 44. Removal of one or both breasts was never needed as a slow growth/slow spread tumor and no indications it's anywhere.
Had my lumpectomy with sentinel node removal (2 nodes removed) a week ago. Got my pathology and post ops results back... Not ideal...
Some pre cancerous cells very near the skin, some micrometastasis to the 2 lymph nodes that were removed.
My case is going to the tumor board today and I will get treatment reccomendation on Friday.
Surgeon said that the board may propose some/all of the following:
1) Removal of more lymph nodes (axillary dissection)
2) Extensive radiation (so also to armpit and upper chest area to kill all cancer cells in lymphnodes)
3) No oncotype scoring as chemo anyway not recommended in my case given the slow growth (and oncotype not so commonly used in my country anyway)
4) Re excision to remove more skin and catch more precancerous cells
5) A much harsher hormone treatment (something to put me on immediate menopause followed by super strong hormone med).
What am I missing? What questions should I ask?
Thank you for reading me and for your precious suggestions.
Comments
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I had just one node removed and it had micromets. There was no talk of another surgery to retrieve more nodes. In your country, do they inject a dye through your nipple before surgery? That is what shows up any cancerous nodes, although I'm not sure if it picks up micromets - my oncologist seemed surprised when the pathology report came back. I would be even more concerned with the cells near the skin. Has your doctor mentioned a mastectomy? Or body scans? Good luck, Andi hope it's not too complicated.
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Thank you Alice. Mastectomy was never discussed as an option given the small size/G1/low proliferation. In general in my country they tend to favour lumpectomy when possible.
My surgeon was also surprised of the micromets - a liquid was indeed inserted before the surgery and the 2 lymphnodes removed as marked by the liquid.
At the moment no bones scans etc recommended as doctor said the cancer cells would be so small there is nothing to be done that would discover them. We did blood test for tumor markers in liver/kidney and maybe one more organ that I now forgot - all came back clear.
I agree that the precancerous cells near margin are worrisome - however I do not understand how reexcision would help since they are not visible during surgery (surgeon had warned me this could happen) so in this case and to have full peace of mind, one would need to think about mastectomy.
I was also wondering if a biopsy of the area after radiation could be done to check the pre cancerous cells.
I am also a bit worried about the extensive radiation (so not only breast but also armpit and decollete). Read here about Proton radiation and will ask.
Thank you!!!
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Buzzer, welcome to Breastcancer.org. We are sorry that your recent diagnosis has brought you here but glad that you found us! We hope our members here along with your medical team are able to help you make the best decisions. Please let us know if we can provide any assistance to you as you find your way around. For now, you can learn more on types of radiation therapy in our main site, here: https://www.breastcancer.org/treatment/radiation/e...
Keep us posted on how you're doing!
Warmly,
The Mods
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AliceBastable, as a clarification, the injection prior to surgery lights up the sentinel nodes, but it provides no insight as to whether or not the nodes contain cancer. It's merely the way for the surgeon to identify those first nodes that anything from the breast would flow into. Those nodes are removed during the SNB and analysed under a microscope. That's the only way to know if there is nodal involvement.
Buzzer, by "precancerous cells", do you mean DCIS or something like ADH? Close margins for DCIS are an issue, and would increase your risk of recurrence. Close margins with ADH are not an issue and do not need to be addressed. ADH is not usually removed except to check to ensure that there isn't anything more serious (DCIS or IDC) going on.
With my first diagnosis, I had very close margins, with DCIS cells right near the skin. I'd had a mastectomy with an expander placed. When I had my exchange surgery (taking out the expander and putting in the implant), I asked the surgeon to remove a bit more skin at the incision line, which was where I'd had the close margin. I know of others from this site who have done the same thing. With a lumpectomy, this could be more disfiguring than is it with a mastectomy, but if the surgeon knows precisely where the close margin is, going back in to either scrape the skin or remove a bit of skin could resolve the close margin issue.
I don't think a biopsy after radiation would not suffice. If there is DCIS at the skin, odds are that it's a very small amount, not visible on imaging. Therefore there is no way to know exactly where to get the biopsy sample. The radiologist could pull a sample from spots A, B, and C, and there might be some DCIS cells 0.2 mm away in spot D. It is also very difficult to do a needle biopsy when the cancer is right up against the skin.
I agree with AliceBastable that removing more nodes after finding micromets in 2 nodes would be quite unusual, particularly if you will be having radiation. The issue is if you have a MX and opt against rads, then nothing has been done to address the nodes. That would result in greater risk of recurrence.
Let us know what you hear after Friday.
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Hi Beesie! Thank you for asking the question.
I reread the report (it's in a language I am not completely fluent in so a bit challenging) and seems I have 2 types of tumors?
The IDC (which was my original diagnosis) is at its worst 3mm from the margins. Then there is DCIS which is in one areas very close to the margin (less than 1mm). This area is called "ventral". I do not know how possible it would be to go and cut this area some more - I will ask!
Thank you so much - this is all super helpful!
B
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Since most IDC develops from DCIS, it is very common to find DCIS and IDC together - I think some DCIS is present in at least 80% of cases of IDC. The DCIS is the lesser condition so it doesn't count towards the staging or the treatment plan; the main way that the DCIS factors in is that it does have to be removed. Because IDC evolves from DCIS, if some DCIS is left behind, it can develop to become an invasive cancer recurrence. So unfortunately in your case the DCIS is factoring in because of the close margins, which means that it has not been adequately removed (yet).
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Beesie, thank you.
The surgeon said it is impossible to see the pre cancerous (IDCS cells) during surgery hence why some may be left behind (she had warned me this may happen). Is this "normal" or the result of poor surgery? Lots of people have IDCS so I guess it should be visible unless we are talking initial cells only?
Am a little confused on this point and wondering whether radiation is not enough to kills these remaining cells.
Thank yoi
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Beesie, thanks for clarifying that for me. My brain was so scrambled that summer with all the crazy diagnoses that I'm surprised I didn't get even more confused. I seem to remember just smiling and saying "Okay!" to all of it.
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Buzzer, it's normal, even with IDC cells, not just DCIS. Cancerous masses may be visible to the surgeon but cancerous cells, whether DCIS or IDC cells at the edge of a mass (or when there are too few IDC cells to form a mass) are microscopic and impossible to see during surgery. Imagining done prior to surgery guides the surgeon but imaging doesn't “see" everything
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Thank you Beesie! Makes sense!
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Hi all!
Got my call back from the Tumor Board.
1) No further surgery recommended.
A. For the breasts the surgery will not necessarily remove the IDCS cells and these will be tackled by radiation.
B. For the lymphnodes, the likelihood that the micrometastasis are elsewhere is so small that the SE from a total node removal are not worth it. Again radiation should take care of them.
2. Hormone therapy suggested Tamoxifen vs the menopause inducing drugs+heavier hormone therapy.
I am very relieved with these news BUT cannot help but wonder if we are not being "soft". Am discussing all with my Gyno later today to get another opinion.
Thank you for any suggestions you have.
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