Oncotype DX, grade 3, 1 poz node?
If you already have grade 3 cancer (and one positive node), would you get a high score on the Oncotype test?
I know it's normally only given to people who are node-negative (since one positive node usually means chemo is a given). But my MO mentioned that I could get it.
I'm having a hard time deciding on chemo, due to other health issues. The thing is, if I don't do chemo now and it recurs/metastasizes, then I guess I have to go through the same decision at a later date.
Comments
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Hugs,
We are all on an emotional roller coaster of information, Etherize. I get it!
Of course you are having a hard time deciding...you're playing cards without a full deck. Get the OcotypeDX test! You don't know untl you know! Create your own normal, and normal choices. One step at a time; get the test, research what the numbers mean, and mean to you in conjection with additional information. Grade is one part of the big picture, not the whole. Your MO is a smart physician...listen and do what you're doing, gathering information, opinions, and make an appropriate choice for you. Every choice is for now based on what we know at the time...monitor and verify information & choices as you go, stay, adapt, or discard as time goes on. A gift of this site is "hearing" ourselves talk; many times it isn't what another says, but what comes up in conversation that leads us to understand our concerns better and make healthier choices. Given other health issues, can you approach one at a time?
My OncotypeDX results are due back next week. My SNBiopsy showed a 1.mm micrometastasis with a Grade 1 Stage 2b ILC. Life just keeps coming at us. Remember...you too have miles and miles to go, with a lot of help from your friends and people on this site.. Colorado Morning Glory
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Thank you, Miles2Go! I met with the MO yesterday and apparently a higher grade cancer does give a higher Oncotype score. There are so many factors now leaning toward chemo, it's pretty clear to me that would be the way to go, even without getting the actual Oncotype test. I just have to weigh chemo against the risk of stopping my other medications.
How are you?! Are you going to get a lumpectomy or mastectomy? I see you're a little newer to this journey than I am ... Actually this is my 2nd trip down "major disease lane" and it is definitely an "interesting" experience.
You're right about the benefit of this site allowing us to "hear" ourselves talk and work out issues. The support here is fantastic.
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My medical oncologist still ordered it for me and I had a micromet in one lymph node and I was grade 2. I also had an axillary lymph node dissection which showed no more positive lymph nodes. My oncotype score came back a 14, in the low range, so he said no chemo for me but I am still considering it a little bit because of my young age and that darn micromet! But in the end, I think I have to trust what he says and everything he has said to me so far makes a lot of sense.
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If I were you, finallynow, I wouldn't do chemo. Having the low Oncotype, only a micromet, being grade 2 and I'm assuming that your initial tumor was small ... all of that works well in your favor. It's great that you trust your MO. That's so important.
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Yes, I am leaning towards not doing it, especially if the doctor doesn't recommend it for me. My tumor was 1.1 cm. Have you considered having your oncologist present your case at a breast tumor board meeting? I had some additional risk factors if I had chemo so my doctor presented my case at a meeting to get other doctors' opinions. They all agreed no chemo if the oncotype test came back low. So I do feel better knowing that so many doctors agree, it's just scary thinking about recurrence. I am glad that my doctor ordered the oncotype test instead of just going ahead with chemo. It might give you peace of mind either way. Even if it came back a high number, at least you would know that having chemo might be worth the risks. If it had come back high for me, I would have felt more comfortable having chemo despite the risks.
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Although it seems like it would make sense, having a grade 3 with one positive node does not always mean you will have a high oncotype score. I had those same stats and my oncotype recurrence score was an 11 with distant recurrence of 8%. I was surprised but thrilled with the low score. Although I had the option to skip chemo, I did chemo for a variety of reasons. However, because of the low oncotype score, I only did 4 rounds of TC. My oncologist told me had my score been higher, he would have recommended more rounds. Good luck with your decisions, and I hope all of you sail thru treatment!
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Thanks, CinD, I should have written "usually" a high grade cancer means intermediate/higher on Oncotype. My MO gave a long explanation of the test, and discussed the reasons why (or why not) it would be helpful in my case.
Was your low Oncotype score the only reason you had the option to skip chemo? We do have almost exactly the same stats. My tumor was 2.3 cm, was yours smaller? I also had LVI, and extracapsular extension on the node. Oh, and I also had DCIS in the same breast. But my first MO said that's not uncommon, my BS didn't even call it cancer, and I forgot to even ask my 2nd MO about it! I'll be doing T/Cx4 too, if I do chemo, and Arimidex after.
finallynow, somebody at my support group mentioned the tumor board ... but I completely forgot to ask my MO about it. I've only met him once, and it was for a 2nd opinion (liked him so much that I called the next day to switch!). I'll think about that; thanks for the reminder!
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Etherize, the low Oncotype score was the main reason I was given the option of skipping chemo, but there was also the fact that my positive lymph node was caught early. My lymph node was minimally positive and appears to have been only in the capsule, so it was caught very early. However, the indication from this was that it was in transit to the lymph node parenchyma proper, which means the tumor had the machinery to mobilize and there was a mention of angiolymphatic invasion in my lumpectomy specimen. I had a lumpectomy but went ahead with a mastectomy when pathology said I still had a positive margin. I had two oncologists who said doing chemo would probably benefit me, but the low Oncotype score gave me the option of opting out. My tumor was 2.5 x 1.9 x 1.5. When they took out all of my lymph nodes, pathology said I had 10 stray cells in a second lymph node as well as 1 stray cell in yet another, but the thought was they were found there as a result of the surgeries rather than an actual spread. My oncologists agreed with my decision to do chemo saying they would have done the same, even though they said I would most likely get greater benefit from the Tamoxifen considering I was highly ER+ and PR+.
I know how difficult it is making these decisions, and we can only hope that we make the right decisions for us.
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I'm following this thread closely because I'm in pretty much the same boat -- 1.1-cm tumor, grade 3, 1 positive node, with .6mm micromet. I met with the MO yesterday and she still wasn't sure whether I should have chemo or not. She says I'm in a gray area, that docs still aren't quite sure what to make of those little micromets. My BS and MO classify me as a 1b. They say some docs consider micromets as node positive and some consider us node negative. We're going to wait for the Oncotype score to come back, to add that to the equation. I'm anxious.
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Maybe it's just because I'm in a worse situation than you, WaveWhisper, but if I were you, I wouldn't do chemo, especially with your MO not being 100% sure you should have it. My positive node was >2mm, so it was much bigger than yours, as was my tumor.
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I dont know if I should have chemo or not, going for a second opinion tomorrow at Mayo. My oncotype was 19. One node positive 14 neg. It said on the path report metastasize, is that because it is in the one node? Tumor was 1.7 clean margins, er-+ pr-+ her- grade 3 IDC .
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robin309, t
I know it seems like an overwhelming decision and you are right to ask what some of us have done is somewhat similar situations. My oncotype was 18, I had clear margins and no positive nodes. But my tumor was a little bigger and I was also Grade 3. For me, after research, opinions, etc. it was the grade 3 that made me decide to do chemo. I am glad you are getting a second opinion at Mayo. You will figure this out.............what is right for you.
Caren
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robin309, yes, the "metastasize" on your path report refers to the positive node.
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Caren,
I saw the doctor at Mayo yesterday. They said yes to chemo. Four rounds of TC. I'm scared of side effects but hope by going this route I won't have to deal with this again...
Robin -
Robin, can you tell me a little more about what the doctor at Mayo said? What was his/her rationale for the chemo? The Onco score? The grade 3? The positive node? Or all three? Curious because I'm awaiting my Oncotype score, but, otherwise, my DX was similar to yours: 1.1cm tumor, IDC, grade 3, 1/3 nodes, ER+/PR+, HER2-...
But at least you only have to have four rounds.
Good luck!
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My mum had ER/PR positive HER2 negative, grade 3 breast cancer, 2,1 centimetres in diameter and one node positive (micromets just 2 milimetres). She had 6 rounds of TAC chemo and her oncologist told her that the chemo will "take care" of that positive lymph node. 3 of her lymph nodes were taken out during surgery, the other 2 lymph nodes were clear. I presume the cancer was caught in time (Stage IIB).
I'm not sure when chemo is advised. My mum's MIB1 (Ki-67) was 20% which is intermediate rate of growth.? (If Ki-67 means something else, please correct me.)
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WaveWhisperer,
Mayo doctor said with Ki-67 at 40% and er pos 98% and grade 3 its very aggressive. My oncotype was 19. Two doctors I saw told me the test was new and they did not go by it. Also my node had cancer, not just a few cells. I also will have radiation and hormone therapy. This is all so confusing. I can't believe the different opinions about the oncotype.
Robin -
The use of oncotype for node positive (including micromet) is fairly recent. It wasn't an option when I was diagnosed in 2009. My positive node was .5 mm, and had Lymphovascular invasion. FWIW ER &PR were both 100% positive and HER was negative.
My MO only does breast cancer and I ended up doing TAC x6 -- my radiation treatment included axial and supraclavical nodes as well as breast with boost expected with lumpectomy. I was totally on board from the moment I heard that cells had started to move from the breast.
The research direction micromets in nodes seems to back and forth over the years. One odd "side effect" -- I had a biopsy on the left breast at same time as the biopsy one the right that was diagnosed with IDC. The left was B9 with "stromal sclerosis".
A 6 mo follow- up US was noted for the left side -- it was between chemo and radiation. The stromal sclerosis was gone -- no sign on US, none on mammogram. The radiologist was suprised -- it was diagnostic order so I talked to her at the time.
I feel very comfortable with my treatment, but the trade offs are different for each of us for risk vs possible side effects of treatment.
Here's hoping we all have good luck with our decisons.
Meg
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Yes, good luck to all of us!
My MO ultimately decided to order the Oncotype, even given its limitations and even though I hadn't pressed the issue after he explained them. I realized that no score I got on it would be the ultimate deciding factor in what treatment I choose.
Because my situation is so difficult (drug interactions between HIV medication and chemo mean two of my options are skip chemo or stop treating HIV), Oncotype is almost the least of my concerns at this point.
Dortey, Stage IIB is still considered "early stage" breast cancer, so that's good! I think it's pretty standard to recommend chemo with a situation like your mother's -- a larger tumor and a positive node. My situation is very similar (other than the HIV!).
Since they removed your mother's cancerous lymph node (along with the tumor) in surgery, she could be technically considered "cancer-free" even before chemo. But chemo is recommended as "insurance" because if the cancer has traveled to the lymph node, it's more likely there are cancer cells elsewhere.
Robin, we also have similar stats; my positive node had macromets, too (not just a few cells). Since we have estrogen receptive tumors, hormonal therapy is still the most important part of our treatment, with chemo being secondary. Radiation is always done with lumpectomies and sometimes with mastectomies. So the biggest question for all of us really is the chemo, and weighing our risk of recurrence against the challenges of chemotherapy.
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Dorty, Robin, Etherize and Megadotz: Thank you all for your replies, with good information and further support for the tough choice we make about whether the "insurance factor" of chemo outweighs the short- and long-term side effects. My DX is so similar to al of yours (your mom's, Dorty) that I hope we can continue to share information. My positive node, by the way, had a micromet of 6 mm.
Megadotz, was yours really as tiny as ".5 mm"? Wow! And how bad was the chemo? How do you feel now?
Dorty, how is your mom now? How did she fare with the chemo?
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Dear WaveWhisperer!
My mum is doing great. I think she put up with chemo really well. Hair loss, nausea, vomiting and lack of appetite were her symtomps, but these were all gone after the treatment and she was working at the time of the treatment. 6 rounds of TAC chemo. I'm not an expert, but despite the bad side-effects of chemo, it is doable. She is on Arimidex now. She was diagnosed in 2008. She had check-up examinations in every third month. The last examinations were in September (Chest X-ray, Abdominal US, blood test) and everything was clear and fine. She has to go back next March.
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Hi Wave Whisperer,
Yes , the micromet was .5mm -- just verified it on the pathology report. There was also lymphovascular invasion that showed up at "lateral and superior inked margins". It's basically the smallest amount that would get chemo.
The chemo was doable -- TACx6 like Dortey's mom. I worked a flexible schedule with FMLA during treatment - took off Thursday and Friday for each chemo -- infusion on Thursday and neulasta shot on Friday. I rested a lot, drank lots of water and made sure I ate a lot of protein. I found that eating Greek Yogurt helped keep thrush in the mouth at bay. Main side effects were hair loss and fatigue, did need the magic mouth wash a couple of times for thrush. Since the chemos were every 3 weeks, the weekend before a chemo I would do something fun like a movie or a play. Mainly just tried to roll with it --not push too hard , but not withdraw completely.
I'm doing well, I went from 6mo appointments (staggered) with each of BS, MO, and RO at the end of last year. After this spring's mammo the schedule went from 6mo to yearly. I am on Femara for five years -- hot flashes and some joint achiness but manageable.
The choice is personal and depends on your situation. There's no one right answer, there's the answer that makes sense for you.
All the best.
Meg
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Dear Megadotz!
Femara and Arimidex are both aromatase inhibitors, aren't they?
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Hi Dortey,
Yes Femara and Arimidex are both aromatase inhibitors. Looks like your mom and I have very similar treatment plans.
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Dear Megadotz!
Yes, your treatment plan and diagnosis is similar to my mum's. Her tumor was larger (2 cm) and Grade 3. ER/PR pos and HER2 neg like yours.
I found something on the Internet this afternoon. (It is afternoon in Hungary.)This:
"The recurrence rate among patients who did not receive adjuvant hormonal therapy was nearly 50% in node-positive patients and 32.4% in node-negative patients throughout the first 10 years after diagnosis."
So it means that adjuvant treatment (hormone treatment) drastically decreases the risk of recurrence? -
Dortey, yes, for ER+/PR+ patients, hormone therapy is a big factor in reducing recurrence. I'll be getting Arimidex, too.
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Robin,
I am not surprised Mayo advised Chemo. I think when it is an on the fence situation they would rather err on the side of caution. My onc actually was assuming my oncotypedx would come back high and the decision would be a no brainer. He was caught off guard with my lower score.
I went for my second opinion at Moffitt CC in Tampa and they agreed I should have 4 rounds of TC, 35 rad treatments and 5 years of arimidex. I did the first two and I am halfway through the 5 years of hormones.
Please don't project tough side effects of the chemo. I was pretty lucky. But after my first two rounds we had to make an adjustment since I was having a bad ulcerating skin condition on my hands and feet. So I was switched to taxol which could be given at a lower dose and did 6 weeks every week instead of an every three week infusion.
My side effects during chemo were minor. I never even lost my taste buds, so food was still good and no problem eating. I won't go in to details but of course I did have some side effects. But I was never "sick" and needed to be in bed. Infact I kept a pretty good exercise routine during treatment and I think that helped minimize effects.
Whatever you may experience, the docs will have a treatment that will help. You will see that most people say that even though chemo sucks, it is doable.
I find great peace that I did the full monty of treatments. When any ache, pain or physical change pops up I tell myself I did what I could do, so no regrets. That is huge as far as I am concerned.
I wish you a peaceful journey. You too will back and reflecting before you know it. I will keep you in my prayers................................Caren
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Caren,
Thanks for you prayers and advice and for sharing your experience. I start treatment on Dec 8th. and finish early feb. I'm finding strength in reaching out to others and so thankful for this board and all of the wonderful women here. You will be in my prayers also for continued good health...
Robin
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Etherize...I too am waiting to see the onco, for the staging and my Onco type test. I keep trying to guess what my score will be based on other stats that yu all have. My surgeon stated that onco, will want to be aggressive with the treatment, but he isnt the onco, and then told my it was not his call. He did clear the margins, so have eliminated the radiation. I had a IDC tumor, with DCIS behind the tumor. I do not know what that means, as they gave both a grade 2. No nodes, but still do not know the stage...til MOnday. I am so scared for doing chemo. I am driving myself crazy!
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bgud2me2, I hope you get the news you want with oncotype score, and don't need chemo.
I understand being scared of chemo, but I found that my chemo experience wasn't as bad as I thought it might be. It's not what you see in the movies or what people experienced even 10 years ago. There are a lot of ways to mitigate side effects, there are great anti-nausea meds. I never threw up once during my six treatments, The two that they can't mitigate are hair loss and fatigue. Many insurance programs will pay for a wig with a prescription for a "cranial prothesis". I didn't get a wig, summer in DC is hot and sticky so I went with scarves and turbans -- my co-workers teased me about becoming a fashionista
Chemo isn't something folks look foreward to, but it's defintely doable.
Here's hoping you don't need this information. The chemo forum has lots of good information, and I'll be glad to answer questions about experience.
All the best.
Meg
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