Biopsy today after 13 years NED help!
Comments
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Thats stupid! I got my results from my BS,!!!!!
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wallan - that's bizarre!! I can always get copies of my reports and the films (on a disc) at no charge, on the spot at the hospital. And any one of my team would have been happy to provide results. Given how long you've been waiting their attitude is beyond belief. I am really sorry you've had such a long, agonizing wait.
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Wallan, this is ridiculous. Your care team is—and there's no delicate, ladylike way to put this—blowing smoke up your butt. I had my core needle biopsy on a Tuesday morning, and by Wednesday night (i.e., the very next day) they told me the grade and hormone-receptor status; Thursday morning they also told me the HER2 status. I had my lumpectomy/SNB less than two weeks later—on a Wed., and the following Mon. morning received my post-op final surgical pathology results (confirming and expanding upon the biopsy result). Because the tumor was >1cm, that morning they ordered the OncotypeDX test, sending a tumor sample to GenomicHealth out in California. Those results came back, IIRC, within 10 days. And all that was a year-and-a-half ago—like “dog years," practically at least 5 yrs. in “21st century breast cancer research years."
If I read your post correctly, they are awaiting OncotypeDX results, right? If so, that means your tumor—besides being no more than Grade 2 and more like Stage IA (t1b)—was hormone-receptor+ and HER2-. Otherwise, you would not have been a candidate for that test. I don't recall where you mentioned earlier (way, way earlier, many pages back) you are located, but you would not have gotten that kind of runaround as a privately-insured or Medicare patient in a major U.S. university-affiliated hospital system's cancer center in or near a large city. (And you'd have been given access to an online patient-portal account with an Inbox for test results, as well as the ability to message your care team and schedule appointments & treatments). If your BS is a breast cancer surgeon and not a general surgeon, (s)he is qualified to interpret and report path results—I got mine from my BS, before I ever saw an MO. And my MO does a breast exam at every appointment I have with her.
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That is ridiculous Wallen.
When I was originally diagnosed in 2001, I received my report from my surgeon once the results came in. I then went to my first cancer agency appointment prepared as I had done my research, reviewing the staging, margins, etc to figure out what the proposed treatment would likely be.
At this point there isn't much point in raising Kane but you deserved better.
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Me too. Got the results from my surgeon.
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Hi ChiSandy:
I am not waiting for Oncotype Dx testing. I am waiting for the Er+/Pr+ her2 status. I had my core needle biopsy on January 20th, an SNB on Feb 10 and my mastectomy on March 8th.
I was told by the BS that the fully pathology report would be available a week after the mastectomy. But when I saw her two weeks after, she did not have the full report and told me it takes at least 3 weeks to get the hormone status and Her2. The BS said the Oncotype Dx testing, if I qualify, will need to be ordered by the oncologist. I am in Canada, by the way.
Anyways, I see the oncologist this morning and I can't believe I am actually eager to get the results. I have learned how to patient in all this.
wallan
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Hey ladies:
I saw my oncologist. She is a wonderful lady. I really like her.
Anyways, my tumors were 100% Er+/80% PR+ and Her2-. So. yeah!!! They tested three tumors. She said I am stage pt1b m, node negative, grade 2, with a low mitotic score.
She said the oncotype dx test will take another 2-3 weeks to return, but she says my tumors are slow growing and I will likely have a low score. She said the multiple tumors are just indicative that I have genetics for breast cancer. The mastectomy is the right treatment for that. She is sending me for genetic testing because she wants to know what genetics I have for risk of other cancers. And she said if I get the genetic testing, I will have closer followup for breast cancer and other cancers and so will my family members. But, I will not be able to get insurance. I have group life insurance thru work right now so this is not a problem. I will get the genetic testing.
She said I will likely not need any chemo or radiation. But, if the oncotype dx returns with high or intermediate score, she will give me TC for 4 cycles. And, she will prescribe letrozole for AI. I have already have Tamoxifen and Aromasin and my ovaries out from the first time. For radiation, I see the radiologist on Friday who will give a definitive answer to whether I will need radiation. But I had clear margins and a mastectomy, so it looks likely not.
She said if this is a new BC, then my prognosis is excellent. But, she said she is concerned that is it a second breast cancer that has similar characteristics to my first BC. It is not "mets" but it is likely the same disease process due to my biology. This negatively affects my prognosis. Of course, there are not much statistics in this regard, so she would not give percent chance of recurrance because she honestly does not know.
All in all, I was elated when I left the cancer centre. Only hormone therapy treatment was what I was hoping for.
wallan
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Oh my goodness. I'm still in shock it took over 3 months for you to get your results.....and can't believe you were told $50 and a consult. Where in the world do you live? I've never been charged and always get a disc and got a copy of the report from Medical Records ( before the portal became available).
I'm so glad that you are happy with your oncologist. I wouldn't go back to the surgeon or the imaging facility after being treated like that. The medical record belongs to you!
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Hi Beatmon:
Thanks for that. It has been an absolutely frustrating time. My oncologist even asked me why I had SNB and mastectomy as separate surgeries. So, yeah. Wtf?
I live in Ontario, Canada.
The cancer centre just called me at home now, and apologized for the time delay and me not getting the pathology report earlier. They have copied my entire record for me and I can pick it up when I go for my radiologist appointment on Friday.
Things are moving along now and my anxiety level is at 3 not at 8. LOL.
wallan
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Wallan ..Great news ..Glad your oncologist is nice ..She sounds thorough with all your testing ! I How / who decides if it's a new BC ???
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Hi lucy55:
Yeah, the oncologist says who knows if its a new BC or not? But its very unlikely to be mets. I had DCIS and LCIS mixed in with the pathology so she says I have genetics for breast cancer and that is likely same "disease" but not from original tumor.
That is why she is sending me for genetic testing too.
wallan
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wallen, since you were diagnosed in January aren't you passed the amount of time they would do chemo? It has always puzzled me I was diagnosed Oct 7th and told if I didn't start chemo by Dec 20th that week before Christmas it would not be offered. Not allowing me to wait until January to start. It didn't sound right to me, I understand the sooner you start treatment the better but it just struck me as a high pressure sale.
I asked my husband, do you hear what I heard? He said I did you couldn't wait till after Christmas, he didn't understand either.
Now that I calculate using end of January you are in the time frame.
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Wallan,
You have the patience of Mother Theresa. How did it go with the MO today? Thinking about you. Big hugs.
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Hi Falconer:
It went well with the oncologist today. My 5 little tumors were all ER+/PR+ her-, grade 2, with 1/3 mitotic index. The MO said I will likely not need chemo but she will send away for Oncotype dx test anyways just to be sure. She said she expects a low score to come back. This will take 3 weeks more or so.
The only "bad" thing is its my second cancer and the biology is very similar to last time. The MO said that is concerning. Its not "mets" or a 'recurrance" from the original tumor, but its the same biology. But she wouldn't give risk of recurrance - she quite simply said "we don't know". I appreciated her honesty. I really liked her actually.
She said she will put me on letrozole for at least 5 years.
So it was a good day. I see the radiologist on Friday. The MO did say since I had clear margins and a mastectomy I likely won't need radiation either. Oh yeah, I am also going for genetic testing since I had multifocal disease and family history.
My anxiety has gone from 8 to 3.
wallan
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Hi Meow13:
I am not sure about that. Last time I had BC, I had my excisional biopsy in February, found out the results end of March and had mastectomy and then was told pathology in mid April. I never saw an oncologist until June. I started chemo last half of June. I have not had a recurrance.
So I am not sure of the window to start chemo after dx. I am sure the sooner you start, the better.
wallan
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Wallen, I think my oncologist was pressuring me to jump into chemo without a second thought. I like your doctor sounds very up front, they really don't know. I pray someday soon we will know much more why we get it and how to stop it without radiation chemo or even surgery.
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Wallan, I guess protocols are quite different down here “south of the border." I know in the States there's usually a recommended “window of opportunity" between surgery and the start of either chemo or radiation, but I've never heard of that window irreversibly slamming shut. But that's water under the bridge (or is it “over the Falls?") ;-)
With those results I'd be flabbergasted if your OncotypeDX comes back any higher than mid-teens. I don't think even a local recurrence (which it probably isn't—“similar" is not “identical") after 13 years warrants chemo—I'm inclined to agree that you just “drew the bad-gene card." You already had the oophorectomy, have been through menopause, and were able to handle the switch to an AI; letrozole is a third-generation AI that seems to hold a slight effectiveness advantage over the others, and my MO said that's why she prescribes it, especially for patients long past menopause.
Good call, though, on genetic counseling & testing—the known significant mutations and variants affect cancers other than breast, and it is the responsible thing to do to get tested (two serial diagnoses constitutes a “history"): you are performing a service for your family by letting them know their own relative risk. GINA doesn't prohibit life insurers from citing genetics as a reason for denial of coverage—but that law is only applicable to the U.S. Not sure about Canadian federal statutes.
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Hey ladies:
On interest of comparing pathology reports, I dragged out my pathology report from 13 years ago. After the mastectomy, the hospital pathologist made a report and then the slides were sent to the cancer centre and a different pathologist looked at them and made another report. The two reports were different somewhat. The hospital report said I had grade 2, with changes in histology like mitotic index, pleomorphic changes, tubule formation etc all having a value of 2. And the size of the tumor was 7.5 cm with no DCIS, no lymphovascular invasion, no multifocality, clear margins and 2 nodes positive, ER+ and PR+ Her 2-
The cancer centre pathologist looked at the same samples and said the histological changes were all grade 3, two positive nodes with extracapsular extension of 6.5 mm, there was lymphovascular invasion, DCIS and LCIS and multifocality (4.0 cm and 3.8 cm tumors) and margins had DCIS at 0.5mm and agreed with the hormone status.
So the hospital pathologist said it was less aggressive than the cancer centre pathologist. I was treated as having an aggressive cancer.
I think this time around, the cancer centre pathologist also gave different interpretation too - although the overall diagnosis is correct. The tumor sizes that the oncologist had were different than what the surgeon said for one thing.
So, pathologists interpretations vary and I wonder (in my suspicious little brain) if this may be a significant source of diagnostic and then after that treatment error? I mean do you think it could be one reason stage one, node negative patients relapse? Because their pathology was misinterpreted in the first place? Or patients are over treated on the other hand? Or maybe just make sure you get a second or third opinion with different pathologists?
I mean, my last oncologist kept telling me she didn't think the chemo was going to work because of the aggressive indications in the pathology report. I did not relapse and I wonder if I even had "aggressive" indicators - maybe the hospital pathologist was right? I guess it really doesn't matter in the end except for all the crap I went thru. And maybe it is good I was treated as having an aggressive cancer -
I guess I am just trying to make sense out of all this.
wallan
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It's been a long haul, wallen, and I'm glad you're finally getting some insight into your situation and what you're dealing with. Whew!
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It sounds like you got some long awaited good news. I am so glad! Hoping the oncotype is low!
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Hey ladies:
More drama. I saw the radiologist today. She confirmed I do not need radiation. But she told that only one of my tumors was sent for Er+/Pr Her2- status, not all five. I told her I thought all five were independent of each other and should all be checked and she said yes that is true. Did the oncologist not go over the whole report with you, she asked?
And you know what, she did not. She told me the results in a summed up way, but did not go over the whole report with me. She said all tumors were hormone positive. So the radiologist told me to question the oncologist and make sure all tumors are evaluated.
And then to top it off, I was to pick up my total pathology report at front desk, and they only copied off the first two pages. So no hormone status was on it. I still do not have the full report in my own hands.
Its almost like there is a cancer devil deciding to torture me. LOL.
The next appointment with the oncologist is May 8th.
I am going to my family doctor to see if he has the full report and if he will advocate for me.
The good news, no radiation needed.
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Wallen, can you go back to the front desk and ask for all the pages? Is it convenient to go back? Now that you mention a single hormone result, I think mine was too along with a single oncodx score. I wonder if it is an average or the worst of the tumors.
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Hey Meow13:
I could ask for more pages next time. I got home and looked at it when I should have checked right there. The funny thing is, the other day at the oncologists office, after the visit with the oncologist, the nurse sat with me and told me how the centre gives out binders with info about breast cancer, treatment options, resources, exercise programs etc etc. she said she would go get it and be back in a few minutes to go over all the resources with me. However, she did not come back. I sat there for about 45 minutes and then I went and asked for her at the front desk and they told me she had left for the afternoon. So I left. The nursed called me at home later that afternoon and apologized - said she had been pulled into another issue and then forgot about me. So she told me she would have the binder and the printed off pathology report at the front desk when I came in for the radiology appt and I can just pick it up. I knew what to expect with this binder because a friend of mine has BC and goes to the same oncologist as me and she had already showed me this binder before I had surgery. It is comprehensive and impressive. Anyways, today when I picked up my binder, it was empty. It had dividers in it only and a front cover page saying "empowering the cancer patient". And it had the pathology report that was not complete. So, I laughed and thought wft?? So, I should have checked the pathology report right there at the front desk. And asked for the nurse. I don't go back there until April 25 for a bone scan now.
I am hoping I get the complete pathology report from my family doctor. If not, I am going to have to shell out $50 bucks to the medical records office at the hospital.
So they only evaluated one tumor for you too? I was told by the BS they will evaluate all tumors because they can be completely different from each other. Maybe this is not true.
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Wallan,
I was away yesterday so just read all of your posts this evening. It seemed like initially there was relief but then a return to the roller coaster of confusion. One thing I'm trying to do is advocate for myself while maintaining zen like calm. I'm failing at it but keep trying. I'm hoping that you can get some peace in this storm. -
Wallan, I would start looking at med-mal lawyers in your part of Ontario. You never can tell. Maybe "no harm, no foul"—but there have been too many “fouls” committed and balls dropped for comfort. Best case scenario is that it all works out, but never hurts to be prepared.
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Hey ladies:
I received in the mail today forms to fill out for genetic testing. The oncologist had said she would refer me but it is totally up to me if i want to go through with it. If you have positive results in the genetic test, there goes your hope of any insurance and I have heard of discrimination for jobs too.
Has anyone else been thru this and anyone know anything about this? Is there a benefit to genetic testing?
I know there is a family history for me - my greatgrandmother died at 46 of BC on fathers side, my grandmothers sister died at 39 of BC on my fathers side, and my father had prostate cancer at 50, cancer of the epithelium lining sweat glands at around 55 and died of lung cancer at 64, all new primary cancers. And now me with BC at 41 and now again with second BC primaries at 54.
So is it worth it?
wallan
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Wallan, probably not as important for you.. but if you have children, it would help them to know.
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Wallan, if you have a genetic mutation that puts you at higher risks for other cancers it can be helpful to know about those sooner than later; that would probably be the biggest benefit to testing regardless of how many other family members might be impacted by your results. HOWEVER - I'd definitely sit down and hash all of it out first with a good genetic counselor. You really need to know where you would stand in terms of insurance, employment, etc., before you make a decision. Good luck with it - and with obtaining your complete path report, too.
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wallan, I also think it would be a good idea to talk to a genetic counsellor. In your situation, I would choose to have the testing for myself. As for life insurance, you are in active treatment, so no insurer would offer you a policy. For most insurers, you would most likely have to wait a period since your last treatment, such as 5 years, before applying. Given your history, I am guessing it is likely you would be either declined or rated substandard, which would mean very high premiums and likely a reduced payout, because they would rate you as high risk. It is still worth exploring, as insurers are increasingly interested in tapping into the large pool of cancer survivors and people with other medical conditions, with so many living long lives. Being declined by one doesn't mean you would be declined by all insurers. I have a term policy to age 65, for which I was rated super preferred and hence was rated with the lowest premiums possible. Having since had a bc diagnosis and treatment, I would be rated much, much lower, given no other health incidents, if I were to consider applying for another policy at age 65 and the premiums would be high.The Genetic Non-Discrimination Act, Bill S-201, is awaiting royal assent. I am not familiar with all the details, but believe it it will offer protection for policies up to $250,000 with respect to genetic testing results and your family members would also be protected from having to disclose your results of genetic testing. An insurer would require access to review your full medical history in evaluating their risk in covering you, depending on the amount of desired coverage. Your best bet for life insurance would be a group policy through an employer (limited to 2x salary) or through a professional association, as you could obtain one without providing medical evidence. Once in effect, the Genetic Non-Discrimination Act would prevent employers from requiring genetic testing and protect you from having to disclose any results from genetic testing. Of course, there will likely some that would still ask, and legal channels or a complaint to the Ontario Human Rights Tribunal could be considered.
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Downdog, I don't think she meant life insurance, she was talking about health insurance rather.
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