When do most recurrences for HER2 happen
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I don't think this is true.
I made the FISH test and I am extremely HER positive. My FISH test came back as 18.3
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Omaz My FISH report came later too. It never said HER2+++ but what I did see is this explanation:
The results reported as HER-2/nue: chromosome 17 centromere probe signal ratio
• not amplified: less than 1.8
• equivocal: 1.8-2.2
• amplified: greater than 2.2BTW my ratio was 15 I think that's really high but that might not mean anything. HER2+ might be one of those measurements where being slightly pregnant doesn't count. You either are or you aren't once you are greater than 2.2)
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intwoplaces, lago - Thanks. It was all such a blurr in the beginning and had no idea what to ask and what to pursue! Probably my local lab must have sent out a tumor sample for FISH and it simply took a while to come back.0
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Yes, Omaz.... and it's a good thing. While I am not a HER2 expert, I know there is some controversy over Herceptin being good for those that are 'equivocal' and not truly negative... in other words; should those that are 'equivocal' be considered positive simply because they were not negative. I, for one, was happy mine came back + via FISH because I didn't have to worry that I was a "little" positive and not getting herceptin!!
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FISH always has to be sent out from what I understand. I believe the lab(s) that do this are Neo Genomics. I think my initial path was back in 1 week but the FISH took 2 weeks.
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Omaz - yes thank you I think of that small study very often.
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I will be starting a herceptin study with a vaccine in baltimore the end of Feb. I figure the extra herceptin cant hurt. If anyone wants info I started a thread called dr. emens study.
Ray
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Herceptin does reduce our chance of recurrance by 50% over a 5 year period. The reason they use the 5 year earmark is because that is all the longer testing is followed. Hey I will take that. I was given my reports at a 70% mets recurrance. They removed my ovaries to cut it even further. You know ladies its all in Gods hands. I thank him for the scientists that found Herceptin and Tykerb! Woo Hoo to all survivors everywhere! I also thank all of you for all the support and friendship we all share (on line) so very helpful, heck I trust y'all more than I do my onc sometimes. hehe Stay healthy! Keep smiling! Keep fighting the fight!
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Thanks, 3day!! You are such an inspiration!!!
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Leanna9
I see you are still fighting, keep going girl you can do it! I believe God gave women the breast cancer because he knew we were the stronger of the 2! I also see that you and I have alot of the same DX. Keep smiling, you have a beautiful one!
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I met today with an MD at the Lance Armstrong Survivorship clinic at Dana-Farber. He's a medical oncologist who treats breast cancer. He raised the issue of my prognosis, which my own dr. never does. He asked me what I thought my prognosis was. With a lot of hemming and hawing, I told him I thought it was good, given the fact that I had a small, node-negative tumor with no lymph node involvement, and had been treated with surgery, chemo, Herceptin, and radiation. He pointed out that most (not all) recurrences of HER-2 positive bc happen early--and that since I'm approaching the three-year mark, my chances for disease-free survival are good. Not guaranteed, but good.
He then pointed out that attention to overall good health (maintaining a healthy weight, exercising regularly, following up with my PCP and oncologist at regular intervals and keeping up with routine screenings), was the most important thing I can do.
He stressed that Herceptin is indeed a wonder drug for women with HER-2 positive cancer.
I was reassured by this conversation. I hope those of you with similar diagnoses are too!
Ann
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Thanks for sharing septembersong!0
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Septembersong I'd also like to thank you for posting - that has made me feel a bit happier today x
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SeptemberSong, we have a very close dx and I was dxed one month prior to you. I also want to add that I work with one of the most nationally renown ONCOLOGISTS and he brings up prognosis all the time. He has said things like "you are cured" to me as he feels strongly as do many that Herceptin in early Her2 cancers is life saving. He also has referred me to several studies that support the idea that Her2 cancers recur early and that the HER2 piece trumps the ER/PR portion so that if you are a strongly Her2, aggressive, Grade 3 cancer most would recur in first 3 years and most all before 5 years. You don't have to think that just because you have the ER/PR component you will still have possibility to recur late as the Her2 grade 3 trumps that.
I say all this with the follow up statement that there are no guarantees in life, but both my Onc's now favor a HER2 diagnoses as Herceptin has rewritten the stats.
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I LOVE hearing good news about Herceptin and early stages HER2+ bc but just wish they would start releasing some of those stat's...
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Thanks to all and especially septembersong for sharing.
We have almost the same stats but I'm only a year and seven months since DX.
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Wanted to also offer some hope and encouragement. I was diagnosed in June 2005. Had a large tumor - 4 cm. Had mastectomy followed by chemo AC & T/herceptin.....also radiation. Also had 1 microscopic cell in 1 sentinel node. I am now at 5 1/2 years out from diagnosis and healthy as a horsey!
My onc. told me (when he released me at 5 years) to follow up with a good internist in my area and to take good care of myself. He also said that you always hear of the many women who recur but what you don't hear about are the thousands that don't (he was referring to his own patients) He said I believe you are one who will not recur. Herceptin has been a God send for us women with her2 positive breast cancer. Thank God for Dr. Slamon who so diligently fought for us as he knew this drug was a miracle for us.
June, 2011, I will be a 6 year survivor and am confident I will make that still being NED.
Blessings to you all.
Mary Jo
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Marejo, thank you for sharing and for hope
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Thank you for this thread. It is so encouraging to hear positive things in a world of uncertainty.
I will be celebrating three years out this year. Whoo Hoo!
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I just got my Oncotype scores mailed to me by my Onc...will see him in three days to discuss.
HER2 which was "positive" on the FISH test, is according to the bar graph on the Oncotype test just barely equivocal. The cut off from negative HER2 to equivocal is 10.7 and my score is 10.9, within the 5% deviation number of .5.
This is important to me, as I don't plan to do chemo and Herceptin is only allowed along with chemo so it appears that may not be as detrimental as I first thought with a FISH score showing "amplified".
My Onc agrees with no chemo due to my age, and has had very good results with Tamoxifen in his 35+ years of oncology practice. I am ER+ 76% and PR+ 57%.
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worldwatcher - that is VERY interesting. I have wondered about oncotype results for HER2+ since they don't do them very often. My FISH was 3.4, what was your FISH? Thx0
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Omaz
Surgical pathology report was IHC 2.7 and FISH 10. FISH came back as "amplified"...do they not have an "equivocal" on FISH? I have always been confused by those numbers, and now see the Oncotype at 10.9 with the negative cut off at 10.7.
The Oncotype numbers for ER are way off from the path report...Path report has positive at 27% and Oncotype at 9.2..76%. In any case, I am way past the time to start chemo, since I had already ruled it out, but have been upset that I couldn't get Herceptin without it.
The Oncotype number makes me feel a little better about that.
I'm wondering if Herceptin would be effective with my score so near the HER2- range? What's your opinion.
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Hi worldwatcher, I think the cutoff for positive FISH (PathVision assay) is >2.2 if it is the type that does the ratio between 'HER2/CEP17'. Between 1.8 and 2.2 is equivocal, less than 1.8 is negative. It is interesting that there is a difference between the path report and the oncotype results for estrogen receptors. I have read that different parts of a tumor can have different characteristics. I agree that it is upsetting not to be able to get herceptin without chemo. I don't know if there are very many studies out there that looked at herceptin alone, most have looked at herceptin plus chemo compared to just chemo. Have you started the tamoxifen? If I remember correctly tamoxifen reduces whatever your risk of recurrence is by about half, which is good!
http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen/
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Omaz
My Onc. wanted bloodwork done before I started the hormonal....he likes Tamoxifen but it can cause a stroke risk and he wanted to see where I stood there...he is a hematologist also. I will probably start it next week. My Oncotype score is in the "gray area" but not in the high risk area which I feared because of the grade 3 on my path report. I was wondering about that grade being so high with the low Ki67 and low mitotic count. When I first saw my Onc he didn't think chemo was worth the risk for me and ordered the Oncotype.
The FISH report and the surgical path report only had a number "10" and "amplified" on them, which is what caused my confusion with it. The FISH report does not have the numbers you cite, just the IHC report. The IHC 2.7 was from the biopsy and in looking at the report I see that 2.9 is the cut off between equivocal and positive on it. So, the Oncotype HER2 score is lower than either of those tests. I tend to go with Oncotype, as both the ER and HER2 are more favorable
I ended up with two HER2 equivocal test results to 1 positive. 0 -
I'm confused about the oncotype test too. I wasn't going to get it, because my Her2 status on the Fish test was amplified, but the onc i went to for a second opinion, who is a renowned expert on Her2+, wanted me to get it because she thought my tumor wasn't acting like a Her2+++ tumor. My oncotype Her2 score came back as 11.6. The equivocal/positive cutoff is 11.5. My recurrence score was 67. I'm still not clear on how much chemo and Herceptin will cut that down, or if the fact that my positive score for HER2 is on the low side means that it will be less effective. Both oncs recommended I go ahead with the TCH. I almost wish I hadn't done the oncotype, because that 67 makes me nervous.
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I concur with Omaz. The explanation on my path report is >2.2 on FISH is positive. It said 3+ but also said in the details: "ratio of the number of copies of the HER-2/neu gene to the centromeric probe for chromosome 17 is approximately 15" Yes that is high.
Omaz FISH is much more accurate than the IHC. If FISH is saying you are positive then you have the same chance as any other HER2+ patient of Herceptin working. Granted those of us that are highly HER2+ like to think we have a better chance of it working I'm not convinced that is true. There have been studies saying both.
Webu I'm not sure what your Ki-67 (MIB-1) rate was but if you did have a high proliferation rate as well as grade 3 there is a very good chance that chemo will work well. Chemo does work best on fast aggressive tumors. I also don't know of oncotype tests are 100% reliable. Yes they are good but not 100%.
Webu, The 2nd opinion onc is renowned expert on HER2+!? Really! I knew it was her specialty but I didn't know she is an renown expert.
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Hi Ladies, just wondering if anyone on just herceptin has bad bone pain? I am 2 months out of chemo and I swear the bone pain is worse than it ever has been. I went to the Dr. today because I thought maybe I had an infection, no he said my white count was low not high, my platelets were low and so was my blood pressure 92/ 68 has never been that low. I guess I will have to wait until I c the onc. next Fri. Just wondering if anyone else has this?
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Sue- Your stats and symptoms sound just like me after I was done with chemo and herceptin. It took about 6 mths for me not to feel like a 90 year old woman (I was 33 at the time). The good news is it should get better, the bad news is it takes time. Hang in there.
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Sue- Your stats and symptoms sound just like me after I was done with chemo and herceptin. It took about 6 mths for me not to feel like a 90 year old woman (I was 33 at the time). The good news is it should get better, the bad news is it takes time. Hang in there.
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IowaSue44- I have been done with chemo since 7/22/10 and have had 15 of my 17 Herceptins and still get bone, joint and muscle pain in my hips and legs after every infusion. It starts about 2-3 days after I get Herceptin and lasts until about 7-10 days after. It was the worst around treatment #11-14 but not so bad after the last one (#15). Hopefully it won't be too bad for my last two, either. Most people say Herceptin is a breeze and compared to chemo I guess it is, but it has not been without side effects for me.
Jennifer
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