Oncotype DX, grade 3, 1 poz node?
Comments
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Meg, as you know from previous posts, like Bgud2me, I'm waiting for my Oncotype results also, with the attendant fear that I'll have to have chemo. I just want to thank you for allaying some of our fears about chemo, for telling us about your experiences with it. Right now, most of us in that situation do picture the chemo experiences we saw in movies 10-20 years ago. Thank you for puncturing that image. I haven't looked at any of the chemo threads yet, but I'm sure there's a lot of great info there for us, should we need it. Meanwhile, thanks again for really good posts.
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I would agree with what has been said. I would also say that the oncotype score is just one piece of information-- the stage, grade, size, etc. all have to be factored in. Also, when it comes to chemo, your current health will be a factor.
I had a slow growing tumor-- the thinking from two major hospitals was that I would have a lumpectomy and radiation and hormonal therapy. I had a lumpectomy, clear margins, no nodes, no LVI--- seemed perfect. Then my oncotype came back in the "gray area" Given my "younger" age at dx and my good health, we decided on 4 rounds of A/C as insurance.
It was not overly pleasant, but not completely horrible. I was able to work full time and I have young children--I was not able to do much more, but frankly, I found radiation more exhausting. Lost my hair, etc..... but here's the thing--it has all grown back and then some.....
This will be a hard decision no matter what the oncotype score. For me, I knew I would never sleep a full night again unless I did everything possible to eradicate this--others feel differently. In the end, it is really up to you once you have all the data in front ofyou. Dr.s rarely "tell"you what to do-- unless there are significant medical indicators (like a really high oncotype-and even then you get to make the final decision).
I tolerated it all pretty well and I am convinced it is because I was in great health going in.....
I am 2.5 years out of treatment and feel great--just had my 3 year oncology visit, all is well---
good luck-if you have to do chemo, definitely go to the chemo threads--lots of great tips. If you don't or decide not to, we will all cheer you on!!!
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Dear ladies!
I was wondering: How many of you were LVI positive? My mum was LVI positive, but it is still not clear what it exactly means. She had one positive lymph node.
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Dortey, I had LVI too. It means the tumor has invaded the lymphatic system and so it's considered more aggressive. Here is a longer explanation from Dr. Susan Love's website:
http://www.dslrf.org/breastcancer/content.asp?CATID=28&L2=1&L3=6&L4=0&PID=&sid=132&cid=1104
Thank you, momand2kids, Meg and all for sharing your chemo experience. It does make a huge difference if you're in great health going in. I'm not in great health at all. So I'm terrified of what chemo will do to me; many of the side effects (i.e. nausea, fatigue) are what I already experience with HIV meds, so I worry it will be that much worse .... If I didn't have HIV, it would be a no-brainer for me. I'd do chemo in a heartbeat.
bgud2me2, I also had DCIS in the same breast as the IDC. My first MO said that was common; my second MO didn't even mention it. Since you had no positive nodes, and your tumor was only grade 2, I think you have a lot more leeway in avoiding chemo if you want to. I sure understand how scared you are! :-) Also, given your stats, I'm pretty sure you'd be a Stage IIA, which is an early stage. That's good. It might even be considered Stage I. Here's a page that explains stages:
http://www.breastcancer.org/symptoms/diagnosis/staging.jsp#stage2
The best thing you have is no positive nodes!
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Has anybody heard of having a hysterctomy to reduce production of hormones? just curious
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My mum had oophorectomy in 2010, but not for that reason. She had a cyst in one of her ovaries after 2-3 months of taking Tamoxifen. She was on Zoladex besides Tamoxifen. There was a chance that the cyst is cancerous. Luckily, it was not. It was a benign cyst. She stopped taking Tamoxifen and no further Zoladex injections were needed. Now, she is on Arimidex. I guess that is because she has no ovaries, therefore she is postmenopausal and Arimidex is good for women who are through menopause.
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My mum had oophorectomy in 2010, but not for that reason. She had a cyst in one of her ovaries after 2-3 months of taking Tamoxifen. She was on Zoladex besides Tamoxifen. There was a chance that the cyst is cancerous. Luckily, it was not. It was a benign cyst. She stopped taking Tamoxifen and no further Zoladex injections were needed. Now, she is on Arimidex. I guess that is because she has no ovaries, therefore she is postmenopausal and Arimidex is good for women who are through menopause.
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Etherize, I hear you. The trade-offs for your treatment options must be as complicated as all get out.
I hope that you've got a coordinated treatment team to help coordinate all this. Are there any NCI centers that also have HIV expertise that help coordinate your care? Maybe a good research university medical center?
I hope that all goes well for you and that your team can help set you on a successful treatment with minimal side effects.
Hugs,
Meg
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Thank you, Megadotz!
Well the picture has changed for me once again. No Oncotype score back yet, but my MO says he just got back from a conference where they said it definitely is worth using to predict risk of recurrence -- I guess this was a new study validating its usefulness to a degree they hadn't seen before.
So now I'm thinking if I get a low score I definitely won't do chemo. And even if it's in the intermediate range, I'll have to think about it. On the other hand, given my luck and my stats, I won't be surprised if it's a high score.
Also learned that my MO wants me to go on CMF because the side effects will be more tolerable, given all the other stuff I'm dealing with. But 6 months of chemo!!!! And no port, either ... MAYBE a PICC line. My immediate reaction was "no way, I can't do 6 months of chemo."
I'd been thinking T/C was the only option (got that impression from him last time) .... this new development has thrown me for a loop.
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Etherize, it seems like they keeping throwing you curves about treatment. It's probably good to take deep breath and regroup. Just make sure you've got the full story before you make a decision,
I seem to remember that CMF can be done with pills rather than infusion (IVs). I think it was an on-off for two weeks periods.
Check with your MO about what the CMF regime actually entails to get the full picture of what you would actually need to do. It might be worth seeing if you can talk to folks who have gone through these treatments. I think the American Cnacer Society or y-me.org might be a good source to find out.
From a distance it sounds like your MO is taking quality of life issues into account in view of the side effects you're getting from the HIV meds.
A friend told me that the breast cancer journey is like being on an obstacle course where new obstacles are added without warning. I hate the suprise hurdles. ;->
Sometimes its hard to roll with new directions when we've had our fill of unwanted suprises.
Hang in there. We're all pulling for you.
Meg
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Hi girls....So I finally got the dx back, and it was a 22. I was a lot freaked out about it, until he went over everything with me. Heres how it plays out...(oh, and I can change my profile now) I have waited since Oct 27 for this final info.
My Grade went from a 2 to a 1. The main tumor is 1.1 - 2 cm, which initially I was told the MRI showed a 6cm, and I wouldhave to do rads and chemo, and that they did not want to do a bimx at this time until they knew what they were dealing with. I am still Node Negative and my ER score is 9.4 and PR is 7.3 and HER2 score is 10.1 (negative) Final Stage 1A.
The shadow on the MRI that they thought was the tumor turned out to be DCIS. So from the first biopsy that showed the tumor grade, was not accurate. I did not realize it could change so much. I had an appt with the Wig lady, which I can cancel now.
So Etherize, everthing can change so much, and I will pray yours is a good score. I know its driving ya crazy, as it did me. I still dont believe it. What a journey.
OC doc said by doing chemo it only improves my recurrence by 1 % and the risk out-weighs the benefits. He gave me a figure of doing chemo and I wasnt listnening. It was like being in a trial and haveing the NOT GUILTY verdict. (not that I have been in a trial) But what a relief and what a a relief!!!!!!!!!!!!!!!!!!
I am praying for you all.
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Bgud, congratulations!!! I know you're relieved. Your onc sounds like a wise man, explaining to you that the chance of recurrence w/ chemo only improved by 1 percent. So what do you do now -- radiation?? hormone therapy?
I get my DX score in a couple of weeks (I'm out of town now). I'm hoping for similarly upbeat news, but I'm also prepared for the recommendation that I have chemo.
Anyway, good for you!!
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Bgud2me, Congratulations on your good news.
Yes, thing can change a lot from the inital diagnosis to the final pathology. I'm very glad that yours changed in such a godd direction.
All the best,
Meg
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YAY!!!! bgud2me, that is fantastic news! So happy your grade was lowered even further and your Oncotype wasn't too high! I can totally imagine that "NOT GUILTY" feeling! Freedom! LOL
Thanks for the good wishes on my score. And thank you Megadotz for the comments. I don't know why I was so thrown off by my appointment yesterday ...
We'd discussed CMF before, but I'd gotten the impression he felt it wasn't worth the risk (it's only 2/3 as effective as other regimens, but does have 1/3 of the SEs -- still, in my situation even that would be significant).
And he did discuss my proposed regimen yesterday -- 18 weeks of infusions, no port, maybe a PICC line ... (Megadotz, some people get pills and infusions but my regimen would not be that one.)
So it's really 4.5 months, barring complications, not 6 as I mentioned -- it just feels like 6 months.
But even that doesn't make much difference because frankly, I doubt I can tolerate more than one or two treatments of any chemo regimen, due to all the other health issues. I just thought one dose of T/C would be better than one dose of CMF.
Anyway, depending on what the Oncotype score is, I'm feeling pretty confident about what I'll wind up doing. While I won't be traveling to any NCI centers for more opinions (no energy, money or frankly, interest at this point), I've done a good job of exhausting the well-respected resources at hand: two HIV pharmacists, three HIV specialists and two MOs (all of whom are in contact with each other).
You're right that this is an obstacle course! I think any life-threatening disease is; I went through it with my AIDS diagnosis ... now I just have double the trouble. lol
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Etherize, sounds like you corraled a great group of experts on both lifr threatening conditions.
Sorry that they're talking about infusions for either chemo regime.
Now I guess all that's left is to double down on wishing you a low oncotype score. And maybe put out a hit on whoever's adding those hurdles to your course!
All the best and vibes fro alow oncotype score.
Meg
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Thank you, Meg!
Here's hoping for the best possible health for all of us!
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Hi Eterize,
I just wanted to share my CMF experience. I was wanting to opt out of chemo because I had just battled enemia and weighed only 106 lbs. I battle depression as well and just thought I could not tolerate the side effects. Well my Onco score came in at 25..that dreaded grey area!! I did research CMF and read the CMF thread on this website and agree to do 6 treatments every 3 weeks. I started on Sept 12 and will have my last on Dec. 27th. So I have had a total of 4 tx's and 2 left. I have had no bad side effects at all!! Knock on wood!! I feel slightly sick to my stomach the first 3 days after tx and not much of an appetite. It is so doable!! I have all my hair!! Yeah!! I had some shedding after the last tx but they say its rare to lose your hair on this chemo. I know losing your hair should be the last of anyones worries with BC but I don't think with my depression, that I could handle that. I did not want a port so I got the onc to give me a script fo a numbing cream (elma) and I put it on my infusion arm about 30 minutes before tx. You don't really feel the stick too bad. The infusion is only about 1 hour and 10 minutes total. I know the CMF is a first generation chemo and not as good as the newer stuff but I was not going to do chemo at all. So I do feel some relief about at least doing the CMF. There are websites that say CMF is effective and used to be standard years ago. You can go to the CMF tread and read everyones feedback. Its very helpful! Good luck with your decision. I know how very difficult it is, but you will be at peace once you make your final decision.
Robin
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Thank you, rockytop! I did know that CMF doesn't cause complete hair loss, which is one positive.
I also worry about anemia, because if I do chemo, I'll have to switch to an HIV drug that can also cause anemia.
That's fantastic that you're getting through chemo with few side effects -- how wonderful to have it over by the new year!
Thanks for the tip on the EMLA cream! I have some leftover from my sentinel node biopsy, and was planning to use it when I have to give myself Neupogen shots (I know the needle is small, but I'm really sensitive to pain). I hadn't even thought about using it for the IV! Great idea!
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Well, I got my Oncotype score back finally .... 35. So I guess I'll be giving chemo a try. I seriously doubt I can do more than one treatment, though.
rockytop, when you put the EMLA cream on your arm, how did you know where to put it? Because it seems like different nurses will start the IV in different places along the veins.
WaveWhisperer, did you get your score back yet?
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Etherize, I just got my score today: an 8. I was elated when I saw it, but the MO reminded me that the graphs she was showing me were for node-negative women, and she considers me node-positive with my micromets. She says the standard of care for women w/ my stage/type is still chemo/radiation/hormone therapy. She's leaving the ultimate decision up to me: 1) 4 rounds of chemo 2) no chemo; or 3) participate in a clinical trial looking at women exactly like me: ER+PR+Her2- with BOTH 1-3 nodes involved and an Oncotype score of less than 25. The trial is designed to see if they tell a cutoff Oncotype score for us positive-node women below which chemo offers no real benefit.
So I'm not sure which way I'm going to go. I had wanted to avoid chemo, but the 4 rounds sounds more doable than the 6 or 8, and I wonder whether, later, I'd wished I have had that extra "insurance."
Anyone else here left their treatment decision up to a clinical trial?
Etherize, I'm sorry your score was as high as it was. Our diagnoses were so similar, except for your tumor being slightly larger. I wonder what accounts for the big difference in Oncotype scores.
If we both have chemo, I guess we'll be starting about the same time.
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WaveWhisperer, I'm so glad you got a low Oncotype score! That's terrific. It is interesting how some people with grade 3 tumors can have low Oncotype scores. I was sure mine would be high, though; I have lousy luck when it comes to health matters.
My MO said that even though the graphs pertain to node-negative women, there have been studies validating it for node-positive as well. Actually, one of the graphs I have is specifically for node-positive women.
He also mentioned the clinical trial you're referring to, but I wouldn't be eligible ...
I can see the argument for and against chemo for you. Whatever you decide, knowing you have that low Oncotype score should give you some comfort about your risk of recurrence.
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Etherize, I'm so sorry that you got a high Oncotype score. I hope your MO is able to adapt your BC treatment to mitigate interactions with your HIVtreatments.
I'm also hoping that you've used up all your bad health luck and that good luck starts taking hold.
*hugs*
Meg
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Etherize, thanks for your reply. Let me know when you start chemo, and we can compare notes. I'm sorry you've had so much "bad luck" with health issues. Just know that your forum messages help a lot of us so much.
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Thanks Meg and WaveWhisperer ... here's hoping we all have years of good health ahead.
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Hello Etherize, Sorry about the onca score. I remember thinking mine would be low, but it came in at a 25 the dreaded grey area. As far as your question about the elma cream, I would put in on the non surgery arm from the elbow down on the front and back side of the arm about 45 minutes before infusion. I also used it for the blood draw. I just did treatment #5 of CMF with only one more to go!! You can do this! Hang in there!
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I had a lymsectomy and my tumor was 2.1 a little over stage 1 and my grade was 3. Margins clear and my lympe nodes were negative. I am er+ pr- and her- . wondering if my oncotype score will be high because of grade 3, well its out now. I wonder whats treatments I will be having?
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Lisa, because you had no positive nodes and you're only Stage I you may be able to skip chemo. The Oncotype score will help you decide. With a grade 3 tumor, I'd be prepared for a higher Oncotype score -- although as you've seen from this thread, it IS possible to get a low score even with a high grade tumor. My motto is prepare for the worst, but hope for the best.
The treatment depends on a lot of things -- your general health, your particular preferences, your age, etc. The fact that you are HER2- and PR- will also be weighed in the decision.
Good luck to you! Ask questions on this site -- there are so many helpful survivors here ...
As for me, I have one CMF treatment under my belt, and as rockytop described, it is a very easy regimen.
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Lisa, as Etherize said, the Oncotype score can surprise you, either way. My tumor was a grade 3, and I had node involvement, so my diagnosis was quite similar to Etherize's. My Oncotype score came back an 8! After reviewing the options, I still decided on chemo plus radiation, so I would know I did everything possible to prevent a recurrence. In the end, the choice is yours. Good luck.
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I had a small-ish tumor (1.3 cm) and was ER/PR+, HER2- and node-negative, and Grade 2. Onco suggested 4 rounds of TC, and as I was deciding whether to do that or not my Oncotype test came back - 42. My treatment has changed to 4 x AC, then 12 x Taxol. And I am part of a clinical trial that looks at the option of Taxol x 6, but dose-dense every two weeks (so still a 12-week treatment). I asked the doctor specifically if my treatment changed because they wanted me in the clinical trial (I could hear the smile on the face of the doctor when she called to tell me she'd never seen an Onco score "that high" before. Thanks). They say no, and research tells me that what I'm doing now is "typical" for the recurrence rate I'm facing (28% metastatic rate, much higher local recurrence rate).
Interestingly enough, the Oncotype score also changed me from PR+ to PR-. My ER score was 6.6 - just .1 away from the 6.5 cutoff for being positive, so I'm almost triple negative. I have wondered if that explains the aggressive nature of the tumor I had.
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According to Professor John Boyage of Sydney Adventist Hospital Team, all tumour grade 3 patients need chemo and radiotherapy even if no lymph node involved!
I found HOPE in Meditating Ezekiel 37 and Psalms 91
Grade 3 tumour divides fast and has high recurrence rate
We are blessed to have Chinese herbs from Chinese Oncologist specialise in traditional Chinese Medicine to balance our whole body system
I took 22 types of herbs, 4 days after chemo and my energy recover without neuropathy, able to cook and go to hospital independently!
AC is too detrimental, it affects my nervous system and causes liver inflammation
My liver gamma rose to 388 with fever and infection of egg size of sebaceous cyst on my back and in hospital for 40 days! Paclitaxel is more gentle to our body as it carries less risk!
12 weekly paclitaxel plus 2 cycles AC
3.2 cm ER+ *Grade 3 *8/18 Nodes
DX 19 Aug 2011 Mastectomy
Love from Kheng in Singapore
3 anointing cheers!
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