stage 1 IDC, grade 2, treatment options?
I don't go see the oncologist till Thursday, but am trying to figure out what they may want to do and the pros and cons. I say this because so far through this whirlwind journey, it's been a deal of they tell you and you have to decide right then and there.
I was diagnosed with Stage 1, IDC, 1.7 cm mass, no node involvement. Had a mastectomy on 6/6/14. Pre menopausal, hormone positive and her 2 negative. Grade 2.
Surgeon said he didn't think they'd do anything else but not to be surprised if they recommend chemo due to my young age. I figured it would be the other way around honestly.
Any help? And yes I've read the articles, but it still doesn't help me. I know everyone's cancer is different, but anyone been through this with this info as mine?
Comments
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Hello and welcome. I'm so sorry that you find yourself here, but I think you'll find a ton of information and support...
My stats were quite similar to yours. After surgery, my MO sent away for the Oncotype DX test and the score on that test played heavily into the decision regarding chemo. He used that score, along with other considerations (including my young age), and ultimately recommended no chemo. I got 2 other opinions from 2 other top cancer centers and all agreed. I take tamoxifen and get monthly shots of zoladex to shut down my ovaries. There is a whole thread in the stage 1 forum called "stage 1, grade 1, and premenopausal" that discusses this type of treatment that you might want to check out...
Also, they might have you do genetic testing which could have implications on your treatment...
Please feel free to PM me if you have specific questions or want to chat. Good luck to you!
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I was also in the same boat as you, well similar. I have double masectomy on 5/15/14 no node involvement, IDC GRADE 2 I thought that would be the end of it besides hormone therepy and hysterectomy but my onco reccommended chemo ended up doing Onco type test came back 31. So I start chemo on 6/27 I was also her 2 - Good luck on your journey!
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My tumor was smaller and I had lumpectomy Had OncotypeDx test (Google it) to find out how much benefit I would get from chemo. Score of 18, doc said 2-3% benefit. I passed. I was strongly ER+/PR+, perimenopausal, so had Tamox. after rads. I think the genetic profile of your tumor (as determined by Oncotype DX or Mammaprint) will be more of a determinant than age.
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I had similar stats. I was 45 and premenopausal at dx. Oncotype was 17 but I had Lymphavascular invasion so I did the chemo. I am on tamoxifen and had ovaries out last year due to cysts.
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yes, get an oncotype test and see what the score is. Generally below an 18 they dont recommend chemo. But you are pre meno, so not sure how that has an impact...I am post. My onco score was a 2, so no chemo for me. bmx, so no rads either. good luck!
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Hi Tx
Same stats .....I found this article ( by Dr Susan Love )regarding the Zebra trail very helpful.
I Was offered either chemo + tamox OR Zoladex ( ovarian suppression ) + tamox.
( went with the zoladex option )
I have one yr to go (out of 2 ) on the zoldex then I am done.
http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=3&L3=5&L4=0&PID=&sid=130&cid=421
If the link doesn't work type in ZOLADEX then click on option 6(Two New Studies May Change Treatment Options For Premenopausal WomenResults in multiple areas) .
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Hi, I had a similar diagnosis but at a young 53, my oncodx was 34 and I chose no chemo, I was given anastrozole because I was post menopausal. Sounds like they will recommend tamoxifen since you are pre-menopausal. I recommend get Oncodx or mammaprint. Ask what test you can get to understand more about your cancer. You want to make sure you can really benefit from chemo.
Almost 3 years now no cancer
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Well my visit was a shock to say the least. It's funny how everything you read says you are not a statistic, but when it comes down to it, they use a stupid computer program that turns you into one. My husband says everything they are doing is for a preventive (he went in with me, has gone to every Dr visit), but I'm worried about it. Nodes were negative, tumor was 1.7 cm, but they found evidence of lymphovascular invasion. Oncologist said to be sure, I have to have a CT next Tuesday, but 99% of those are ok, but they don't have to power to see cancer cells, just spots that are big. The surgeon told me it was stage one and that was it. Nothing else, he didn't mention the invasion thing. They also messed up on the biopsy and I'm her equi something, meaning they can't tell if I'm + positive or negative, thus I have to be treated as if I'm positive. I have to have A/C four times every three weeks, and then Taxol and herceptin once a week for twelve weeks and then herceptin every 3 weeks for 9 months. Then hormone therapy tamoxifen. I'm also 1c for a stage. Does this seem over doing it to anyone else, or has anyone gone through this? He used the Adjuvant! Online program to tell me all this/decide to do all this, so much for not being a statistic. With this refining it supposedly brings my chances of relapse from 35% with no therapy to less than 10%, don't totally like the 10% odds,but guess I have no choice on tmatter. Radiologist, said no radiation, he didn't think, but drew blood for the brac test, and also was gonna get the oncologist to run the oncodx test, (oncologist said he didn't know what it was, but I don't think he understood what I was talking about). Ugg so anyone been through these things?
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tx....before embarking on an active treatment plan, you should have as much info about your tumor as possible. As Elimar mentioned, since you were ER + and the HER 2 status was not fully determined, you are eligible for the OncotypeDX test which might further establish info regarding whether or not you are HER 2 positive AND if you are NOT, whether or not chemo's benefits outweigh the risks. If it is established you are HER 2 positive, then the active treatment plan, suggested by the physician, is the one recommended by the NCCN breast cancer treatment guidelines. Register at the NCCN's website and read the professional version (red logo) of the breast cancer treatment guidelines for details.
Also, you might wish to have your pathology results read elsewhere. You might also request a second and/or third opinion once you get your path results further investigated.
Also, if you are premenopausal and ER +, you need to familiarize yourself with the TEXTand SOFT studies. Good luck!
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Wow - that's a lot if interesting information! I agree with the, "you're not a statistic but we're going to treat you like you're one" thing.
Sounds like you may be Her2 equivocal? I was initially, so another test called FSH was completed to determine my actual status. And the results - knowing if you're actually positive or negative - is vitally important because it determines treatment. If you are Her2+ then yes, you'll need Herceptin for a year which is given in conjunction with chemo. If you are not Her2+ then you won't need Herceptin and may - depending on the result of your Oncotype score - not need (of choose not to do) chemo. Herceptin can be hard on the heart; I would not want to take it if I didn't need it. I'm a little surprised your doctor hasn't suggested further testing to determine your actual status.
I am fascinated that your onc doesn't know what the Oncotype test is. For node negative, Her2-, Stage 1, it can be the difference between chemo and no chemo. Then again, if you're Her2+ you won't need the Oncotype test because you'll need chemo anyway.
So sorry you find yourself in this situation. Maybe further testing/exploration is warranted?
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I wasn't fast enough on the submit button - great post VR! :-)
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I second VRs thought of getting another opinion. I always wished I had done so, just to clear some things up. Johns Hopkins does second opinions. You can have your slides sent there. http://www.hopkinsmedicine.org/avon_foundation_breast_center/second_opinion.htm
Also the oncotypedx will give you THEIR results for ER, PR and HER2. I'm glad you are having it run.
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The reason all the ladies so far have mentioned further testing and second opinions is because in the past it was thought that anyone with spread of cancer, to nodes or with lymphovascular invasion, should automatically do chemo. That is not the case. More recently is has been found that chemo is not that effective for women with ER+/PR+ cancers because they are growing so slowly (and most chemos kill cancer cells in their active, growing phase,) so for the ER+/PR+ cancers, an anti-hormonal therapy can be more effective.
Do not mistakenly think of chemo as "the big guns" and Tamoxifen as a poor second choice or something you can only do after doing chemo. They are both very effective depending on the characteristics of your cancer. (For example, some Stage IV women are given only Tamox., and it shrinks the cancer down to where they can have remission and be stable for years on just that.) I agree with everyone who said to find out as much as you can to avoid taking something unnecessarily.
Finally, your oncologist must live under a rock not to know what the OncotypeDx test is. It has been out for 10 years!
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It was equivocal, thank you. They ran one test on it and it said that, so ran a second one to clear it up, and it came back same thing? The A/C is the one I was worried about causing cancer later on, but he said you have to have mega doses and he wouldn't give me mega doses. The taxol can harm your heart,but he said that was reversible? I'm so worried over the lymphovascular invasion thing. He didn't explain it too much other than to say the pathology on my tumor said they found evidence of it. The radiologist said it 'probably' meant it was starting to go to my lymph nodes, but couldn't say about the blood vessel part. I know my nodes were totally clear, no sign of cancer in them at all, or that is what they told me, not even a microscopic amount in them. But what about the blood vessel part? I have to have a CT scan to check and he did say 99%came back fine. Hubby says he thinks it's all preventive but it scares me. I came out of surgery thinking we got all this crud and were home free. And they gave me a stage of 1c, which is supposed to be not bad from what I read, but if that's the case why are they making me feel like it's serious? Did anyone else's use that adjuvant program? I know it is listed on the American Cancer society's site as one that is used. He of course told me I didn't have to do anything, but with just hormone therapy the risk of it relapsing (he said in other parts of my body) was like 25%.
And will the onco test change those percentages? Or will it be a deal of doesn't matter if you get chemo you are probably gonna get it back and die anyways?
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I have the same stats as indicated below. I have a BMX and did chemo. I'm taking Tamoxifen. The chemo decision was easy to make when I had a score of 24 from my Oncotype testing. Younger women are more likely to get chemo because we have more years ahead of us. I'm 53 and I was premenopausal and chemo sent me right into menopause. The second page of the Oncotype report shows how much of a benefit chemo will provide. For me, it was about an 8% reduction in risk and well worth it for me. Chemo is scary but I am very glad I did it. I've been as aggressive as possible in kicking cancer's butt and I won't have to look back with regrets about those decisions I have control over. This is my story. I hope it helps in some way.
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I don't think he understood me, because the other Dr is the radiation Dr and also does the genetic testing for the center and he knew, and said he'd get it ordered.
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tx....what most of us are saying is to gather the most info that you can about the tumor. There is a huge difference between being HER 2 POSITIVE and HER2 NEGATIVE. The former requires a year treatment of Herceptin. The other issue is if you are HER 2 NEGATIVE, would you benefit from chemo? So, these issues cannot be answered until you get more info.
Regarding the Adjuvant! Online tool that gives you statistics, that is merely one more tool to use to help you decide if chemo is right for you. But what I find difficult to understand is if you haven't used the best of medicine's tools to determine if you are HER 2 POSITIVE, I don't think you are being given the best possible info to make an informed treatment decision.
Now what your husband is saying is true. Following surgery, an active treatment for Stage 1is to prevent a local, but more importantly a distant recurrence (mets).
Please don't let your mind go to a dark place. For many patients, breast cancer is very treatable!
I wish you well!
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txranchmom,
The psychological extremes of ups and downs at time of diagnosis while going through the delays of testing make it harder to feel like you can figure out a perspective to rely on. The psychological effect makes us all feel shaky about being able to get a grasp of our own real situation. First there is a sense of relief if the initial test results are minimal. Then as more tests are done and come back, until they are all done, one lives in the craziness of having something that seems so tiny and so possibly minimal at the same time it could have aspects that are much more likely to need the treatments that are scary, time-consuming, expensive, and difficult. The testing is all they have available to work with. Sometimes even when it is completed, early stage patients especially are stuck with having to make choices when most patients with the same characteristics would never recur, yet some will, and no one knows which ones. YOU aren't crazy. It seems like there "should be" a more definite way to choose, but so far, there just isn't. Some choose to "do the most toxic treatment possible", even though we all know that it works for some and still doesn't work for others, or "works" for some only for a while. Ask as many questions as you want to. It is complicated, but there is more confidence with your individual personal decision-making with getting at least some understanding for the tests and choices available.
A.A.
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Oh and don't get hung up on the "c" part. What they are refering to is the tumor size. Please refer to this chart from Johns Hokins.
- pT1:Tumor ≤20 mm in greatest dimension
- pT1mi:Tumor ≤1 mm in greatest dimension (microinvasion)
- pT1a:Tumor >1 mm but ≤5 mm in greatest dimension
- pT1b:Tumor >5 mm but ≤10 mm in greatest dimension
- pT1c:Tumor >10 mm but ≤20 mm in greatest dimension
The c part in your tumor dx is refering to the size bigger than a centimeter, but less than 2 cm.
Don't confuse this with the stage. Based on the information you have provided you are stage 1a (pt1c,n0,m0). That is my dx too.
Stage IA: T1, N0, M0:The tumor is 2 cm (about 3/4 of an inch) or less across (T1) and has not spread to lymph nodes (N0) or distant sites (M0).
As VR noted - the thing that is hanging you up is the HER2 equivocal, that's why it is so important to know it is correct.
I'm sure you're in overload by now. I hope you can find a way to get your mind off this for a little while.
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According to the latest ASCO updated guidelines for determining whether a tumor is HER 2 POSITIVE OR NEGATIVE...the following should be done:
"The original guideline focused on IHC and fluorescence ISH (FISH), whereas the updated guideline adds recommendations for a newer diagnostic technique known as bright-field ISH. This technique also evaluates for amplification of the HER2 gene, and uses a regular light microscope rather than a fluorescent microscope. Some sources of variability may be reduced with this technique as the invasive component can be more easily identified using bright-field microscopy."
If both tests have been done and the physician is still not sure whether it is positive or negative, then the OncotypeDX test that your physician ordered should be the tie breaker.
The new guidelines are very firm in indicating that a treatment plan should be DELAYED until all the info is obtained. They also state that with all the tools pathologists now have, fewer patients are "equivocal."
Good luck!
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I'm just worried about the lymphovascular invasion. Ok I get it spreads via lymph nodes or blood vessels. But does it always go through the nodes or bypass them? I thought it always went through them. And does evidence mean it is just starting or has progressed?
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tx...for the moment, do not fret over the mechanics of lymphovascular invasion. For now, it is not an independent prognostic measure, although there is a great deal of research being done on it. Researchers are trying very hard to determine its prognostic relevance. As of now, it merely gives the physician an idea of the tumor's aggressiveness. That said, there are many methods for the physician to determine the aggressiveness of the tumor and what treatment might be suggested accordingly. Again, I hate to harp on the subject of the OncotypeDX test, but I think the results will help you determine a treatment plan that is right for you.
Rest assured, there are many sisters who had lymphovascular invasion and are doing well.
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Well, hmmm... since I was the one who said to ask as many questions as you like... and meant it... Your question is a good one to ask your pathologist or your oncologist. "But does it always go through the nodes or bypass them? I thought it always went through them." I don't know if it means that it simply was seen in either system and/or both, since the pathologists use that term to generalize instead of being specific. However, since the lymph system picks up materials that could come from the blood vessel system, it could be moot.
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I think I may have asked this before but can't find it...does anyone know if ANY Drs do the oncodx on tumors less than 1 cm? Specifically 1.1 mm (invasive part of mine)? If it IS done I want it done, but if not I can stop worrying about it. I was also HER2 equivocal and the specimen was sent off for further testing.
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In order for most insurance companies to cover the cost, at minimum, the tumor can be no smaller than .6 cm with at least a Grade of 2. That said, the test can be performed on smaller specimens, but to my knowledge, it can not be done on a speciman as small as .1 cm. Trying to determine the HER 2 status is important. Again, that said, giving Herceptin and chemo to that small of an invasive cancer is controversial since the risks might outweigh the benefits. Register at the NCCN'S website and read more about it. Read the professionals version (red logo) of the breast cancer treatment guidelines. Make sure you read the footnotes and discussion at the end regarding all of the current studies pertaining to endocrine therapy.
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I'm full of questions, debating going to Baylor for a second opinion. But those docs are Texas oncology also, so would they be that different in their treatment plans? Is 4 rounds of A/C and 12 doses of taxol a lot of chemo or do others get more? From what I gather, I get this stuff, based on my age, grade and size of tumor. The her stuff is still out for the jury, and they are supposed to run the onco test.
Good news is I'm in a better mood today. I think I'm to the point of lets just get on with it.
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If you are HER2 negative, the Oncotype will help determine if chemo would be effective or not. The best chemo for you may not necessarily be the strongest. There are serious side effects from chemo. Different regimens are needed to treat different tumors. The 4 x A/C plus 12 X T is very aggressive. If you are pre menopausal, then generally you get more aggressive treatment than if post meno.
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tx...please register at the NCCN website and read the professional version (red logo) of the breast cancer treatment guidelines.
Furthermore, it was announced at last year's annual ASCO meeting that patients who are HER 2 Positive now have more chemotherapy choices in addition to the Herceptin.
You mention you have lots of questions. One of which is should you be receiving a second opinion. I would get several opinions and/or have your case submitted to the hospital's tumor board.
While it is optimal to begin chemo within a month of surgery, I think it is equally important that you try to have your HER 2 status confirmed before embarking on treatment. A surgical pathology report drives the treatment plan. Until the OncotypeDX DX score confirms your HER 2 status, I would continue getting other opinions AND get as many of those questions answered as possible.
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LVI can be focal or extensive. The former often means "nothing" because survival rates are the same for someone who doesn't have LVI. Extensive is another thing.
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