<1 cm - Stage 1a - Team
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Hi all from Melbourne, Australia.. A valuable discussion for me...
Have been reading with interest all your posts.You all sound amazing.... I am awaiting oncotype at the moment for 5mm idc. tumour highly er and pr pos. The Initial path reports made chemo look highly unlikely, but final report showed ki67 was borderline high at 20, and mitotic rate was 3/3, so the onc suggested oncotype as some small tumours can be aggressive. Felt so lucky to get it when I did but now having nervous anxiety about it all..
Just still not sure if size is factored into the oncotype score? Read somewhere that it was, and somewhere else that it wasn't.... Any clues?? -
Ingrid...First off, the OncotypeDX test was developed for Stages 1 and 2 node negative ER+ tumors. Clinicians and researchers had previously known that they were overtreating many ER+ patients, but before the OncotypeDX test they didn't know EXACTLY who they were overtreating. So that's why they developed the test. For Stage 1 and 2 Node Negative ER+ patients. So size does matter, with respect to being classified with a tumor that is no greater than Stage 2 and NODE NEGATIVE. However, the test is a genetic one and has no bearing on the size of the tumor. It simply looks at the genetic makeup of the tumor. Furthermore, now there is a clinical trial to see if the OncotypeDX test can be used for patients who have several POSITIVE nodes as well.
The reason why your physician recommended the OncotypeDX test... was probably due to the size of your tumor....BECAUSE IT IS SO SMALL....and if the other tests had come back LOWER, you probably would have NOT been recommended chemo. However, since the OncotypeDX score looks at the genetics of the tumor, you will have additional information to help you and your doctor decide whether or NOT you can benefit from chemo.
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Delighted you posted, Ingrid! Don't go away -- the time difference brings some delay in response. I think the most accurate and up-to-date response might come from VR. So I will just say hello to encourage you to keep checking here. I was diagnosed so long ago that I am not as current about the question. I was diagnosed so long ago that it wasn't even standard to test for HER2 positivity, and the only hormonal post-chemo treatment available to me was tamoxifen. (I'm not entirely sure all of those differences truly represent a lot more progress, or whether it simply offers one/inflicts one with more choices that make people feel like they have more control over this disease!)
A.A.
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AA Just curious - if you don't mind sharing, when did you find out about your positive Her-2 status?
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Violet 1 - I'd enjoy meeting you too in person if both of us can find a way. My DH, our scottie (3 senior citizens), and I will be ferrying and driving south most likely, so will be coming through CA (Canada), WA, OR and into N Cal, going as far south as Sacramento via I5, and likely will include travel east up US 50. First part of June. I have jury duty all this month to fulfill, or we'd be on our way already... PM is fine, to avoid taking up more of this thread.
A.A.
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joyH1109
Don't mind at all. It was not the best medical practice unfortunately...! I found out about my HER2 positive status somewhere around 1-2 years AFTER dx, and it was ONLY because I questioned it. The HER2 trials were coming to a close at the time I was diagnosed, so oncs were well aware that they were looking promising. The MO I had was considered top of the line.... and never once mentioned the possibility of trastuzumab or the trial, which I would have been eligible for at the time....and I had specificcally ASKED to participate in clinical trials... yeesh.... I'm just thankful that, as things turned out, I didn't need trastuzumab, and didn't end up costing myself and the world the extra cost for it.
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Violet, grammie, smo and mepic...
My thought upon reading your posts was simplistic in a way, but I am of the belief that not all answers have to be complicated even in a scientific environment. Sometimes a simple observation is intelligent.
A recent study indicated that breast density is especially relevant in regard to whether or not a patient is benefitting from the use of tamoxifen. I can say that observation of breast density was true in my case. So keep this concept in mind, even in considering whether or not you personally would benefit from tamoxifen. My breast density after completion of CAFx6 and IMRT rads of 7 weeks was still very dense. After just 3 months of tamoxifen, my mammos were very clear and not at all dense, and they have remained that way ever since, despite my dropping off tamoxifen after only 1 year at full dose and 3/4 year at half-dose. At the time I noted the difference but no one else saw what it meant. I cannot prove it but I think I was one of those patients for whom tamoxifen works extremely well right off the bat. (My tumor was 95% ER+, but the recent study didn't mention whether or not they were smart enough to analyze the degree of ER positivity as part of that trial about breast density with tamoxifen.) What I wonder too is whether those who benefit right away like I did, stand to have adverse effects if they continue it TOO long.... but at any rate...
Since some of you are going to be seeing experts soon about it, maybe you might ask them specifically about the recent study and whether or not they have gotten up some willingness to USE breast density as a way of measuring whether or not to initiate tamoxifen, and whether or not there is willingness to USE the degree of breast density to MONITOR as you go along on the drug, to see whether you can drop off of it sooner.
Perhaps you could share their responses with us to keep us current.
Just my 10 cents.
A.A.
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A.A. - Re: Breast Density
I HAD extremely dense breasts, however, I had a BMX, so no breast tissue left...;) I can ask about this in general, though, when I go on the 20th...thanks.
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Hi,
Thanks VR for clarification and for replies!!! Thx Alaska Angel too....
Just re-read all posts, Positivethinking- did you get your oncotype score? Hope it was low....
Your stats sound similar to mine...
Interesting re the dense breasts.. I always thought because mine were so small that they couldn't be dense, but on my first mammogram where the idc was picked up, they said that they were....Does the dense ness mean less response to the tamoxifan or more???
Thanks Ingrid -
Theoretically, what the denseness means is that if you have been on tamoxifen for a while and the breasts are still dense by high-throughput mammogram, the tamoxifen likely is less effective for you. If you have been on tamoxifen for a while and the breasts are less dense by high-throughput mammogram, the tamoxifen likely is working for you. If you don't have dense breasts to begin with, then possibly you would not benefit from tamoxifen. Consider showing the study to your doctor to get your doctor's opinion about it.
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Thanks AA.... Interesting...!!! I suppose high breast density must relate to high(er) levels of oestrogen circulating in the body ... I breast fed all four of my kids, yet still did have quite dense breasts..
Hopefully tamoxifan will fix that... Still waiting on oncotype info first though. Six weeks post surgery- it's hard not to stress.... I wonder how many t1a sisters here are opting for chemo? . If er and pr pos that is... Anyone else with a small t1a tumour here who opted for chemo ? -
Voraciousreader: You state that the Oncotype test is a genetic marker test. I am in my second round of BC. Does this mean that there is no need to do the Oncotype test again, since "my" genetics haven't changed? Or is it a genetic marker test specific to the tumor, and they WILL run the test again?
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It appears from your signature that you previously had lobular and now have ductal. That indicates that it is a new primary tumor. If it is larger than .5 cm, and you are ER positive and HER 2 negative, then the NCCN breast cancer guidelines indicate you are a candidate for the Oncotype DX test. Some patients have had smaller tumors tested. Remember, the Oncotype DX test will give you information telling you whether your benefits of chemo will outweigh your risks and will tell you your chances of distant recurrence.
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THANK YOU!!!
Maybe, with all your research, you know the answer to my other question: knowing that I am BRCA-1 & -2 NEGATIVE, if I have a masectomy I believe that takes my chance of recurrence or new cancers down to under 1%. Is that right? Also, if I DON'T have the masectomy, and given my history (my first tumor was about 1cm, the second is about 7mm: you have all the other information), do you have any idea what the actual statistics are? Or where I can find them??
My hubby wants to know.
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Steph...You have to distinguish between local recurrence and distant recurrence. Local recurrence is in the breast. Distant recurrence is metastasis. When you get your OncotypeDX score they are referring to distant recurrence at 10 years. If you have a mastectomy your chance of local recurrence is very small. If you want to get a guesstimate of your prognosis....check out cancermath.net...when you put in all your data...it will tell you what your prognosis is and also tell you how each type of therapy affects your survival. When looking at the types of display graphs...pick the pictogram because it is the easiest to understand.
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Hi all,
Tumor was half 30% DCIS-70%IDC. Found through the mamogram. .7cm. Very high Oncotype took chemo 4 treatments/radiation,plus now on Femara. I was not planning for the chemo but because the Oncotype came back high took the chemo. Tumor was grade 3. Skipped one year for mamo then cancer was found on following mamo. Wonder if it would of showed as DCIS being it was half? But will never know for sure. Don't ever skip a mamo.
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Rose12...Agree don't skip mammograms, I had a benign cyst dx in 05 and 06 then in 2012 IDC..Missed quite a few mammograms, never again.
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Missed a few mammograms too! Hate myself for that. I had been called back on the last one for another look and they said with a better mammogram view (squished more) I was clear. I skipped the next two years and then diagnosed with cancer in that breast. Will never skip any type of cancer screening again!
My one year follow up mammogram is on Tuesday. Already anxious about that.
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I posted in the HER2+ group, but thought I'd add my data here too. I was diagnosed with 2mm invasive ductal carcinoma which was ER+, PR-, and HER2+ (+3). My onc said that Oncotype is done only for ER+ that is also HER2-. I will not be getting chemo or Herceptin because of the small size of my cancer. She would have done chemo with Herceptin if it had been 5mm or larger. I will get radiation and Tamoxifen only. My tumor and DCIS were both high grade and ki67 was 24%.
2nd opinion with new MO was similar. No chemo/Hercptin. But this one recommends Arimidex instead of tamoxifen. I am going with that.
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My story sounds very similar to yours, so I wanted to keep in touch with how you are doing. I was diagnosed with invasive Ductal Carcinoma this past July, 2013. The invasive size tumor was only 4mm, grade 2, and I was triple negative. I had a mastectomy on July 31, and also have bilateral tissue expanders in place . Plan to have the implants placed in January. The oncologist told me the tumor board at the treating facility recommended no chemo and would give it to me if I still wanted it, but he felt that I would only receive about a 2% risk reduction in reoccurrence. I chose not to have the chemo, but I worry about reoccurrence because it is triple negative. I am working on changing my diet and exercising also. I need to lose about 50 pounds and would love to hear how you loss your weight. -
I have been reading many, many posts on the various forums about breast cancer and thought I would share my experience. I was having follow-up mammograms and sonograms for a "watched spot" for over a year. I have moderately to severe dense breasts. An architectural distortion started showing up back in April and May of 2012. Follow-up mammogram in Jan. 2013 showed no suspicious abnormality at all. Came back in Aug. of 2013 for another mammogram and it showed something very vague, however, a spot cone compression of the area showed nothing. That same day a sonogram found a 1.1.cm. suspicious mass. I had a biopsy performed 2 weeks later and pathology revealed infiltrating ductal carcinoma, right breast. I had a lumpectomy in Sept. of 2013. There is no history of breast cancer in my family. I am ER+90 and PR+90, Her2 negative. Out of 5 sentinel nodes removed, 4 were negative and 1 had isolated tumor cells. My final score was 4/9. My Oncotype score was 21 and my medical oncologist said chemotherapy would not benefit me. The report also said I have a 13% of reoccurrence of distant metastasis with being on Tamoxifen for 5 years. I have had quite a bit of anxiety over the past 3 months and am trying to settle down. It is hard for me to calm down. I will start 30 radiation treatments in about 2 weeks or so, not looking forward to it, but feel it is needed. MO wants me on Tamoxifen for 5 years. I had a bone density scan and have moderate osteopenia, so other drugs may not be an option. I am already thinking of NOT taking the Tamoxifen, especially with the side-effects I have been reading about. I am very near-sighted and years the Tomoxifen can cause cataracts and eye problems and my eye sight is so important to me. Also have family history of blood clots. My brother died of a pulmonary embolism 3 years ago. So all of this cancer diagnosis is still a bit of a shock --I've known now for 3 months. I am in a breast support group and have a very caring husband and close friends and that helps a lot. I want not to worry about recurrence, but I still tend to think about it too much. I've been pretty anxious and have dropped 12 lbs. or so just from digestion problems due to anxiety. I'm taking Ativan to help me sleep. What is hard for me is that many women out there have breast cancer diagnosis much, much worse than I do and I end up feeling guilty worrying about my stage 1, grade 1, well-differiented cancer and I know my changes of recurrence are most likely quite small. I have been wanting to share my experience for some time now. Thank you for reading. I really appreciate all your posts. We are learning from each other. -
rosecal......We are learning from each other, and we all have different reasons for following or not following the prescribed treatments. You are the boss of you, do what's best for you. -
Thank you Loral for your reply. This was my first post. It's difficult to make decisions for my own best interest and not going by what the doctor has suggested. I am working on it. Have a Happy Thanksgiving! -
Rosecal, I know what you are going thru. Everything is so overwhelming and there are so many decisions to make. And with no family or friend experiences, it was hard for me to talk about it with them. Their advice was well-meaning, but not really helpful. This web site helped me immensely. I just had my 6 mo. mammogram on the bad side, and there is something suspicious about it. The radiologist recommends coming back in 5 months, and I have to wait until the 9th to see my doctor to even find out what the problem is. The anxiety you feel is really something I really identify with. I took ativan the first couple months after diagnosis, and now I feel like taking it again. Even tho my Oncotype score was 4, I think the fear and anxiety stay with us. I've been on tamoxifen for 4 mos. now, and the SE are manageable. But like you, I'm near sighted and already have baby cataracts, so I'm afraid of losing more sight. I just thought I should at least give the meds a try, and I could make a decision any time along the way to discontinue. Problem is, my MO wants me to take it for only 2 years, then switch to AI drugs. Since I too have osteopenia, I told him I would have to think long and hard about that decision. I even agree with you about feeling guilty when other women are in a worse spot than me. But each of us has our own journey to make, and everyone's struggle is a little different. Thanks for sharing, I really identified with your remarks. -
Diane, I'm glad we are sharing and identifying with each other through our breast cancer journey. Each one of us are unique, have different diagnoses, and we all have our own journey, but it is so good to learn and share from each other. I know I can't be the only one who has anxiety over the breast cancer diagnosis. I struggle every day, but I am hoping and praying that after radiation and when I make the decision to take Tomoxifen or not, I will start calming down. The Dr appointments will get further and further apart. I imagine after a year. I am awaiting a phone call to schedule my simulation for radiation. When I had the consultation with RO, she wanted me to have a post-lumpectomy, pre-radiation mammogram. That was done on Nov. 19th. Radiologist said when I had it, "it looks OK and then the preliminary report that came in the mail said "probably benign" with the statement it's hard to read because of my dense breast tissue. Schedule another mammogram in April 2014. So more waiting and wondering. I know the office is coming off a long weekend from Thanksgiving and they swamped with patients and paperwork. It has been 11 weeks today since my lumpectomy and I'm beginning to wonder if that is a long time to wait for the radiation to be most effective, however, all the timing has been out of my control. Thank you for reading. -
Rosecal, I just want to reassure you that the feeling of anxiety does get better with a little time. I think the fear stays with us of a possible recurrence, but you won't always feel so anxious. I just went to my family dr. and asked her to read the mammo report. She said the things the radiologist is seeing are normal after a lumpectomy and internal radiation scarring, and I too have very dense breasts, so they are hard to read. She said the 5 month re-check is protocol. So that was a big relief. My internal radiation started two weeks after my surgery, so my experience from screening mammo to completion of my radiation was two months total. It must be really hard for you to have it go on so long. Still, I feel like I didn't quite have enough time to process everything that was happening, and I think going to your support group will really help with that. Keep the faith that it will all work out for you! -
Diane, That was nice you had a relativity short span of time between diagnosis and radiation. I was diagnosed -- Aug. 21 of this year and having my radiation simulation tomorrow, Dec. 5th. That is quite a bit of time and being the anxious type anyway, it has taken a toll on my emotions and nerves. I wish I could get my heart to slow down. My latest mammogram showed benign calcifications and the radiologist has recommend bilateral MRI in April, 2014 for a re-check since I have very dense breasts. I am anxious to get the radiation started; it will external. I guess my brain is still processing and adjusting to all this new information. I hope and pray everything will work out fine for you. I met with my support group on Monday and it was good to be with women who are going through the same thing. All of the other women have far worse diagnoses than myself and I end of feeling guilty how I worry with my Stage I, Grade I small cancer. All of them have been through chemo, and I haven't. so it's hard to relate in that respect. Thank you for replying. I will try very hard to keep up the faith and stay positive.
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