Went to get an opinion of a surgeon who had not asked for AND (Axillary Node Dissection) from someone that had 3/3 Sentinel Nodes test positive to see whether he had any scientific research that I somehow missed to back his decision with hard data.
What he said was basically the same line with the radiation oncologists. He does not see removing of the Level 1 & 2 nodes as a treatment, but more of a staging tool.
He also said that at a conference that he attended there was a heated discussion on this specific subject and no consencus was reached of course.
His main points were:
1 - My lymph node involvement seems to be minor, 10-15 years ago my case might have tested as Node negative, the IHC(Immunohistologic staining) is too accurate and captures even minute amounts now.
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2 - The c cells are trapped into the lymph nodes ( who were doing their jobs of capturing bad stuff from going into the system) and they do not go anywhere from where they are captured.
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3 - All Lymph nodes are not removed anyways only Levels 1&2 are removed, what happens to the rest ? ( levels 3&4 )
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4 - The area will be monitored closely for any enlargement of the lymphs and then the AND will be performed if such a thing occurs.
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5 - The chemo and rads should take care of any micromets that are in that area.
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6 - He has only done 1 AND in the last 5 years and that was done at the request of the patient.
I was not confused when I left the doctors office because I really do understand what is going on now. This issue of AND being part of the treatment or not is at a turning point in the medical community. And those who do not want to stick their necks out are erring on the side of convention/caution. If one looks at the evolution of the mastectomy which was a totally debilitating surgery when it first was done- removing chest muscles and everything .. to how it is done today, just removing the breast tissue by ensuring of clear margins.
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So I do have a surgery date of February 14th but am not sure whether I am going ahead with it.
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When I got home I decided to give a call to Moffitt c center who still has not returned my pathology slides to ormc. The breast center coordinator stated that they were looking at the unstained slides and were doing the her2/neu test.. WT >????????
I asked whether they were doing FISH she said yes.
Hmm.. this is a bit worrisome my initial pathology said HER-, and if they are suspecting HER+ this will change the treatment going forward. But then why the the surgeon at the Moffitt center say that they agreed with the pathology ? Could it be that they had not reviewed it actually at that time ?
This really sucks !!!
Checking into what the stinky FISH means:
"Testing for the overexpression of the HER2/neu oncogene can be done with immunohistochemistry (IHC) (using a special protein to identify the gene's protein) or with FISH (fluorescent in situ hybridization that measures the genes that direct the production of the protein). FISH is somewhat more reliable than IHC, but IHC is most readily available. If your test showed a 2+ by IHC, that is considered "HER2/neu negative," which means a better outcome than if the test were positive. If you did FISH testing on all 2+ by IHC, about 25% of the samples might actually prove to be positive. In any case, Herceptin (trastuzumab) is only indicated presently for women with metastatic disease that is HER2/neu positive. It is also available on a number of studies for earlier-staged patients."
"Two tests are used to figure out if the cancer is likely to respond to Herceptin. One test measures HER2 receptor protein (IHC), and the other test counts copies of the HER2 gene (FISH):
IHC (ImmunoHistoChemistry)
IHC is the most commonly used test to see if a tumor has too much of the HER2 receptor protein on the surface of the cancer cells.
The IHC test gives a score of 0 to 3+ that indicates the amount of HER2 receptor protein in tumors. If the tumor scores 0 to 1+, it's called "HER2 negative." If it scores 2+ or 3+, it's called "HER2 positive."
Women with IHC positive scores tend to respond favorably to Herceptin. The drug is not considered effective for tumors with IHC scores of 0 or 1+.
It's important to remember that results on the IHC test may vary from lab to lab, and that some labs are more proficient at HER2 testing than others. Discuss with your doctor whether you might want to get a FISH test, especially if you have a 1+ or 2+ result from IHC. That way you can get another measure of whether the tumor might respond well to Herceptin.
The IHC test results are most reliable for fresh or frozen tissue samples. IHC tends to be an unreliable way to test tissue that's preserved in wax or other chemicals. FISH testing is the preferred way to assess preserved tissue samples.
FISH (Fluorescence In Situ Hybridization)
The FISH test looks for the HER2 gene abnormality. This test is the most accurate, but less available, way to find out if a breast tumor is likely to respond to Herceptin. The FISH test shows how many copies of the HER2 gene are in tumor cells. This gene directs cells to make the HER2 protein. The more copies of the gene, the more HER2 receptors the cells have.
With the FISH test, you get a score of either "positive" or "negative" (some hospitals call a negative test "zero"). If the tumor is "FISH positive," it will probably respond well to Herceptin.
"HER-2 is a gene that helps control how cells grow, divide, and repair themselves. About one out of four breast cancers has too many copies of the HER-2 gene. The HER-2 gene directs the production of special proteins, called HER-2 receptors, in cancer cells. Read recent research about treatments for women with early-stage cancers that are HER2-positive.
Cancers with too many copies of the HER-2 gene or too many HER-2 receptors tend to grow fast. They are also associated with an increased risk of spread. But they do respond very well to treatment that works against HER-2. This treatment is called anti-HER-2 antibody therapy.
There are two tests for HER-2:
IHC test (IHC stands for ImmunoHistoChemistry)
The IHC test shows if there is too much HER-2 receptor protein in the cancer cells.
The results of the IHC test can be 0 (negative), 1+ (negative), 2+ (borderline), or 3+ (positive).
FISH test (FISH stands for Fluorescence In Situ Hybridization)
The FISH test shows if there are too many copies of the HER-2 gene in the cancer cells.
The results of the FISH test can be "positive" (extra copies) or "negative" (normal number of copies).
Find out which test for HER-2 you had. This is important. Only cancers that test IHC "3+" or FISH "positive" will respond well to therapy that works against HER-2. An IHC 2+ test result is called borderline. If you have a 2+ result, you can and should ask to have the tissue tested with the FISH test"
My result for the HER2 was .9 according to the pathology report.. wonder why they are doing the FISH ???
At that point since my head started spinning there was no way I could focus on work, the weather was gorgeous(around low 60's) I called P and asked whether she would be willing to slug a 3 miler with me. She graciously agreed and we went out for 45 minutes of jog/walk/talk getting some air helped me recompose.
Immediately after we split my surgeon (Dr. Chambers) called (I had called her) she said that, she received the report from Dr. Sollacio (radiation oncologist) if it was her, she would not get the AND.. since I was getting rads.
She also added that If there is still c sh..t in the lymph nodes after chemo and rads I should really be worrying about the systematic mets since that means that chemo and rads did not work, local recurrence is not worrisome no one got into trouble cause of lymph mets. She also added like everyone else(except the Moffitt guy) that there were any positive lymph nodes left there anyways.
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My million $ question was that whether the c could possibly spread from the lymphs where they were living (if there is still stuff in the remaining ones), of course no one can answer that.
So far those who say go for node dissection:
1 - My oncologist -- has a HUGE weight
1 - Major cancer center(Moffitt) surgeon(who is kind of a rookie)
Those who say no go for node dissection, but just do rads:
2 - radiation oncologists
3 - surgeons
1 - major cancer center tumor board(MD Anderson).(that includes my surgeon)
So no rads are winning 6 to 2.
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If I do not do dissection my oncologist said that he was ok with it, however then that means that I can not trust him 100% in my treatment going forward..and I need to find a new oncologist ( he already is my 2nd one !)
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I know at this point the response from everyone will be 'good grief girl, just let it go'
BUT I CANNOT THATS NOT ME !!!
I am being tested but not sure on what
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