Stage 1, grade 1 and pre-menopausal
Comments
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Esmeralda, recd my score last week. 19 -- 12% of recurrence. My MO would not under any circumstances have me do chemo. He basically said the risk is more than the benefit. With BMX, he might even say that your score (in his opinion) is lower. 15 is in the low risk. 17 is intermediate. Even though I was 19, because my hormone receptors were 99% for both, MO feels my score is lower. These scores take into account 5 years of tamoxifen.
I am worried about it too....but I am going to move forward and pray.
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Survellience should serve you well. The only thing is your age. What was your mitotic count? If it were anything above 1, I would do the chemo, esp with your age.
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Esmeralda... As you can see, I had a 15 score as well. I rationalize my score the following way. My lifetime risk of developing breast cancer was 12%. Before my diagnosis, that statistic never concerned me or for that matter, wasn't even on my radar. Today, my risk of a distant recurrence is less so I will choose to think even less about those odds.
Regarding treatment , because you have great prognostics, you have many options to choose from. If you scroll back on this thread, you can read about the many options available to you. Good luck!0 -
Thank you voraciousreader. You are so knowledgable and provide such a sense of peace in the midst of all of this!
bluepearl, you mentioned that "survellience" should serve me well. But because the oncotest is about the risk of metatastic cancer, I don't think "surveillence" applies at all. In fact, as I understand it, there is no advantage to constant surveillance of possible metatastic cancer. If I am wrong about this, I'd love to hear it! (Of course, PREVENTION of metatastic cancer is of utmost importance!)
Secondly, I haven't heard anything about a mitotic count. What test provides this info? Oncotest? Would it be in various pathology reports from my biopsies or mastectomy? I'm very interested in learning more about this - if indeed it would apply.
As for my age... I really wonder why my age weights into any of this. I understand it in regards to risk of local recurrance (a longer life to develop a local recurrance), but metatastic cancer risk is based on THIS current cancer... if a few breast cancer cells traveled to my hip... that really has nothing to do with my age, no?
Thanks for your insight, ladies!
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Esmerelda, the mitotic count is part of your grade. It is the third number that makes up the total score. I would also say check your k-67 score if you have one. Less than 10 is low risk 11-20 mid risk. I believe it some how relates to the speed the cells are deviding as well.
For me my score Oncotype score was 24. My k-67 was 13, but my mititic score was 1.
As far as age goes the Dr's tend to want to treat more aggesively younger people.
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kira1234, thank you for the info. I'll need to look into my path reports and see if I can find the mitotic count.
I asked the Genomic Health folks about whether they provide Ki-67 score and they said they do not because they believe it does not provide conclusive information. They said you can speak to two of the best oncologists in the world, and that they'll have vastly different opinions on the meaning or even the value of the ki-67 score. Sigh.
Kira1234, just curious, did you end up having chemo?
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I had 1 dose but had some really bad SE's so my Oncologist refused to continue. I unfortunately have not done well with any of the treatments. On my second AL due to very bad SE's. If this one causes me grief as well I'm pritty sure he will not be trying anything else. What a life!
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What a life indeed! (And I mean that for all of us.) Sometimes I think the BC diagnosis is more or a spiritual thing than a physical one - meaning half the battle (more?) is coping/hoping/praying/accepting hard things and working to transform it all into something GOOD, in my humble opinion. Thanks for your help, kira1234!
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I couldn't agree more. The last 2 years have seen such a change (and for the better) in my life. I just got done with a class I had to take for school that again reaffirmed everything about the changes I've made. Something that really struck me was they asked us all to really think about when you are 90 what do you want to be remembered for? For me that is how I try to live my life now not so much to please others!
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Hi Jen, I am late coming into your responses. I agree with VR your stats are great and the long term risks of chemo would almost certainly outweigh any reduction in recurrence risk. You are egg harvesting so your decision on hormone treatment during the next 5 years will need to be considered carefully. Are you going to take tamoxifen or going for ovarian suppression? Preservation of fertility/ potential pregnancy whilst minimising risk of recurrence is a a very unique and challenging issue in BC. I hope you have the support of a good oncology team. There are some good threads on this site relating to fertility issues which you may find useful.
Best wishes and good luck with your decisions.0 -
Interesting read - I was diagnosed at 47 am pre menopausal. Had a UMX with no Rads or Chemo. Here in NZ we are not offered a BMX or any form of Onco test so have no clue how high or low I might be. Will be reviewed yearly from the date of my UMX and will be offered a MRI as the mammo showed nothing even though I had two large lumps of DCIS (6cm + 5cm) with carmedonecrosis and a small lump of IDC (less than a cm). Have not been offered any other meds like Tamoxifen etc and am quite happy with this as I am hoping I have nailed the BC and kicked it into touch. Plus the more I read about the side effects I think - no thanks.
Hoping that the course I have taken is a good one
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Hi Hils, you had tumour less that 1 cm with good path features eg good clear margins, no lymphovascular invasion, grade 1, node negative there is argument for no adjuvant hormone treatment being needed. It's surprising though that your team did not even discuss tamoxifen! I the UK this is used even for DCIS alone. Oncotype DX gives additional confidence with treatment plan. This test was not offered to me either in the Uk but I decided to pay for it for piece of mind. Fortunately my result was reassuring 😄. I am having hormone tx. I am younger, I was very pre menopausal and I had 2 tumours.
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Hi Annice, thanks for responding. I am committed to doing the five years of tamoxifen, and anything else that will reduce my risk of recurrance. We will be looking for a gestational carrier (which I still can't believe!) in order to add to our little family. After tamoxifen I will be 45 which feels to old anyway to be pregnant! For fertility, I'm on femara and will be doing lupron, which will suppress my estrogen I believe, as the follicles grow and are harvested. I guess this is the BC protocol for fertility preservation. I
'll definitely look into the fertility threads you mentioned. Thanks for your encouraging words!!0 -
P.S. I honestly don't know enough yet about hormonal therapy versus ovarian suppression... I've got a lot of reading to do and my consult on monday with the oncology team at the University of michigan should help, I hope!
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Hi Annice - nope Tamoxifen was not discussed, my Estrogen was 90+%. Have to say was not asking for it either and totally agree the chemo and rads would have been totally silly in my case as it certainly was not warranted. As I say very happy with my treatment path or lack of one. It leaves me lots of weaponary if anything every happens in the future.
Cheers
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I am 34 years old /stage 1/ grade1 /pre-menopausal. I just had a bilateral mastectomy on May 22. Bad news is the path report showed unclear margins on the sidie that they found the IDS/DCIS (other side was cancer free). Now I'm waiting for Oncotype results. Dr suggested Tamoxifen and possibly chemo. Radiation Oncologost and Medical Oncologist both suggest radiation for margins. I opted for the mastectomy because I didn't want radiation in the first place (and I still really don't want to do it). The doctor said that the meds and possibly chemo wouldn't work (for sure) for the margins. I'm scared to make a bad decision with the radiation (seems to be a lot of risks/side-effects involved) but I NEED to be here for my girls.
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Mamaoftwins, I know this is all so challenging. Especially when there are so many decisions to make. If you are seeking opinions, your very last sentiment really spoke volumes. "I NEED to be here for my girls." I too didn't want radiation, but in my heart, if I was told I needed it - that it would improve prognosis - I would do it. Now, that's just me and you need to feel good about your down decision. I guess I would encourage you to look at that statement about your girls - its obviously the most important thing to you (and I can relate) - and so perhaps you should allow that sentiment to be the driver of your choices. There are many, many women that can talk with you about their experiences with radiation, and those whom I know personally say that the experience of the treatment was actually quite easy (painless and very quick), though I'm sure your concern is related to the long term consequences. Good luck with your decision. I am wishing you peace of mind. I'm sure more folks will come along shortly with more info and guidance then I can provide. Peace to you.
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Mamaoftwins - I did have 7 weeks of radiation. I'm a 44 year old mother of 3 and did do the raidiation. Please feel free to PM me if you have any questions.
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Mama of twins, it's all about balancing risk. With dirty margins the radiation reduces your risk of a local recurrence down the line. The chemo and tamox takes care of distant recurrence risk. I think your risk of local recurrence without radiation would be greater than the risk of radiation itself
((((Hugs))))0 -
Jen, there is no definitive evidence re tamox vs OS for early stage BC. However for pre menopausal women unable to take tamox, outcomes appear as good with OS or ovarian ablation as with tamoxifen alone. For women with ER responsive stage IV disease tamoxifen plus OS gives better remission rates. For pre menopausal women with early stage BC there is no published study showing outcome of tamox or OS alone vs together. The SOFT study is looking at this and may be published as early as end of 2013. VR is keeping us posted about date! Until then it is an individual decision as to whether to go belt and braces for OS plus tamoxifen in combination or one or other of these as a lone adjuvant treatment. I too have young kids and decided to do tamox plus OS as its logical! Estrogen is my enemy! However there are risks and side effects of inducing premature menopause which you need to be aware of. As an endocrinologist I am happy to take those risks, and they are certainly not as bad as I would have with chemo!
Hope that helps explain!
BW
Annice
P.s. your fertility team seem to be very clued up0 -
Annicemd - I am 36 and on tamoxifen. My MO is going to start Zoladex shots soon, doing them every 3 months to suppress my ovaries. She hasn't mentioned the risks of this. What are they? I've recently read on here that it could be bad for your heart in the long run. How so? (My family has a history of heart disease). What others things are there that I need to be aware of?
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Hi txmonof2, main risks are bone thinning which naturally occurs after menopause. I have zomenta which protects my bones and possibly gives some BC protection
. As estrogen protects from heart disease, the zoladex blocks this protection so the effects of other risk factors such as high lipids, smoking, blood pressure and high weight will need to be addressed more seriously in the long term. But the main problem for most women are the side effects of the chemical menopause, it induces including hot flashes, mood changes, achy bones etc. If you can cope with the side effects the other issues that I have mentioned can be addressed. Oncs tend to use ovarian suppression routinely for younger women I.e. in 30s because estrogen levels tend to be higher than women nearer natural menopausal age and estrogen is food for estrogen dependent BC
Hope that explains0 -
Thanks Annicemd!
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Hi ladies, just wanted to give an update and ask for some perspective... I met with our very well respected local oncologist, as well as the team of oncologists at the University of Michigan (a top cancer center - specializing in pre-menapausal BC), and they BOTH are not recommending chemo. I guess I should be relieved and happy, no? I have moments of that, but I'm also feeling very scared. Here are the three pathological outcomes thus far:
1.) I had my surgery in New Orleans and the pathologists there indicated the following: 2 cm tumor, clean margins, no LVI, grade 1, stage 1, mitotic score 1. My left breast (prophy) showed fibrocystic changes and atypical lobular hyperplasia.
2.) I then received my Oncotype score as 15 which means 10% distant recurrance risk with 5 years of tamoxifin. The test showed that I scored a 9.8 for ER positivity, a 8.9 for PR positivity, and a 9.4 for HER2 (negative).
3.) Finally, the pathologists at U of M are showing this: 2 cm, histopathological grade (Bloom-Richardson): 2 (!!!), 95% ER+, 98% PR+, and HER-2 says this, "Equivocal (2+) by IHC, Negative by FISH analysis (Her2/D17z1 ratio = 1.10).
I am most worried that two different pathology teams seem to come up with two different grades (1 and 2), unless there is something that I just don't understand about all of this. Secondly, I asked about doing the FISH analysis again for HER2, and UofM told me that oncotype result of the HER2 status would be the absolute MOST reliable (it includes ki-67 and 21 gene assay) more than the FISH, and that the oncotype is clearly indicating that I'm negative. UofM is a TOP cancer center and I told them that it's frightening how they seem to put all their eggs in the oncotype score... they then said maybe I should get a second opinion. Serves me right. :P
I'm so anxious about all of this. I think because of this... one of my closest friends has stage IV BC and her HER2 initially tested as negative, only LATER did they find out it was actually positive and that she should have been on Herceptin. Her oncotest score was also 10 - so she chose no chemo initially, despite the fact that her tumor pretty much took up her entire breast (8+ cm). I know all BC's are different and I cannot compare myself to her, but I can definitely take from her experience of having tests not always tell the whole or true picture. It was only at MD Anderson when they decided to re-test the tumor that HER2 positivity was discovered.
I have no idea what wisdom or knowledge you all can share with me... VR and AnniceMD, I'm looking to you... can you give me some perspective. They want me to start on tamox in two weeks. I just want to be sure I've been vigilant about advocating for myself and am peace when I begin to take tamox and wave bye-bye to chemo. THANK YOU!!0 -
I don't know what to tell you other than to get another opinion. I got 3 from different oncologists and all 3 agreed no chemo for me. It really helped to put my mind at ease. One thing that I asked the 1st oncologist was to retest my other tumors (I'm multifocal) and she said it's very expensive to do. The 2nd oncologist did retest my other tumors for the ki-67 marker and they all came back at 1%. I had that knowledge when meeting with the 3rd onco so that helped her decision. I'd try and have your tumor tested again if possible.
On another note, I see that you're 2 cm but a stage I. I was initially diagnosed as a stage I with a 1.4 cm tumor (from what they could see on the MRI/CT). Final pathology showed 2.5 cm tumor so they said anything over 2 cm is considered stage II. Anyone else that's a stage I but has 2cm+ tumor??? And I had asked why they couldn't tell it was 2.5 cm on the scans and they said it doesn't show DCIS as well so I'm guessing I had 1.1 cm of DCIS and the 1.4 was invasive.
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My tumor was 2.1 cm but my surgeon (UCLA) said she was staging me as stage I because the difference in size (between stage I 1.9 cm and stage II 2.1 cm) was so marginal.
My oncotype came back at 14 with 9% chance of distant recurrence but even before that, my onc said she was not recommending chemo for me because of the biology of my tumor (low grade, low Ki67, high ER & PR). I am completely comfortable not having chemo. Tamoxifen is the treatment of choice for me and I take it gladly (and no major SE to speak of).
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Jen there are some differences between your 2 path opinions but you are grade 1 or at worst 2 so low grade, node negative, HER 2 neg (2+ is massively different from fish positive) I checked this as I was the same. You are early stage. It has been caught early. Your friends story is heartbreaking but she had a massive tumour there may be other details you dont know about so don't compare your stats to hers. There is always a risk of micro mets with this disease so tamoxifen should take care of them. If you are very pre menopausal and want to be aggressive with treatment then go for ovarian suppression also. It is thought that th benefit of chemo in young women with early stage may be mainly due to the chemopause it induces. Finally chemotherapy has inherent risks so for it to be justified you need to have a high risk of recurrence. I know the 10% recurrence you have been quoted feels unbearable, I spent a long time stressing over my stats. But what I focus on is that those data ar based on women treated a decade ago and longer. Our treatments are so much better now so my feeling is that the oncotype stats may (hopefully) over emphasise the risk. Not to underestimate the risk. That's why I have been aggressive with ovarian suppression as well as tamox but I have similar stats to you and I am totally comfortable with my decision of no chemox. If you are still unsure then go for a 3rd opinion. You will gradually find the plan that works for you. Good luck
Annice0 -
Esmerelda.... First off, you have, as you are probably aware by now, very good prognostics. However, I can appreciate your concern because the pathology reports differ.... slightly. My tumor is a very rare type, mucinous. On our thread devoted to mucinous carcinoma, I stress the importance of the pathology report because it is paramount to making treatment decisions. If I were you, I would ask that your oncologist go back and have your pathology reports be reviewed again. Hopefully, there might be a way of getting clarification as to whether your tumor is grade 1 or 2.
With a low OncotypeDx score of 14, I would tend to agree with your doctors and defer chemo. I had a score of 15 and was dissuaded from doing chemo by 3 medical oncologists. Like many stage 1 grade 1 sisters, I also chose ovarian suppression. For me it was an easy decision since I was 53 at diagnosis. Yesterday, I had my estrogen levels checked and I hope that my levels continue to remain low. I also had a Zometa infusion.
I wish you well.0 -
Hi ladies, I am absorbing what you've written. Thank you for responding. I'm hopeful that possibly the hardest part of this is deliberating, choosing and then accepting one's treatment path. And until that point, it can be stressful and worrisome. I think I am going to pursue a third opinion, as well as have the pathologists look again for grade. I'm not clear exactly whether grade 2 automatically means chemotherapy (it very well might not?), but it is an important piece of the puzzle.
I recorded my appointment with the UofM oncologist and I just got done listening to it again. I feel a bit more at peace about the direction they are suggesting...for now. But, I still want to get my path reports and tumor slides before another nationally rated cancer center and see what they say. I did ask about ovarian suppression and they did not recommend this for me (but, I'd like to dig a little deeper with them on this next time I meet with them). I asked them specifically about Zometa and the oncologist talked about there being a benefit for older women, but not for very pre-menapausal women. He mentioned that there was a study very recently released on this. (Probably one that VR has already posted about!) I'll listen to that part of the conversation again and will post about it, just in case it's useful or informative to anyone.
Regarding OS, I'm confused as to why this would be needed if Tamoxifin is doing its thinking (blocking the estrogen from the receptors). Does it have to do with not knowing how well Tamoxifin is being metabolized? And, so if there's any chance that it might be as effective, OS is a back-up, sort of safety net?
At any rate, thank you all for your input and perspective. I feel like I have two weeks (after which time I have to start on tammy!) to reach for a peaceful agreement about my treatment. Your suggestions are helping to create that pathway.
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Esmerelda... Regarding Zometa... At the most recent San Antonio Breast Cancer Symposium, last December, Dr. Gnant released his latest Zometa findings. It appears that women over 40 who are doing ovarian suppression and have 6 Zometa infusions over 3 years have good disease free survival after 8 years following treatment. At 53, and close to menopausal, I did O/S for 2 years and now at age 55 we are checking my menopausal status for the next year as I complete my 6 Zometa infusions. For younger women, the Zometa evidence isn't compelling. Likewise, the O/S data, however, has not been verified yet, so many doctors cannot fully recommend it at this time.
Again, I think for your own mind's sake, it would be a good idea to nail down the pathology so you can be as comfortable as possible with your treatment decision.
Regarding the grade, many doctors are now giving more weight to the Oncotype DX test because, as you can see, grading a tumor can be quite subjective. The question for you would then be, how much confidence do you have in the Oncotype DX test and are you comfortable with your score's outcomes based on NOT doing chemo? I have always found it difficult to understand why anyone would be encouraged to do chemo when they had a low score because the risks of chemo, as it was explained to me would outweigh the benefits. While some might argue that the TailorX study lowered the benchmark for doing chemo, I believe that was chosen so they could statistically prove there was no benefit at all for doing chemo in the 11-18 range and the only way to prove it was to randomize women to receive or not receive chemo. The results of TailorX won't be known for several more years, so not even that info can help you at this time.
Again, I wish you well...0
