Stage 1, grade 1 and pre-menopausal
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Hi beherenow and welcome. Sorry you have joined us. You mentioned 1/1 node -Is that 1 positive node? Did they then do an axillary node clearance because the number of nodes involved will influence your treatment. Your stats look great so far. I assume your team will do an oncotype DX which will help also guide your treatment plan. You will certainly be offered hormone treatment, the question that needs answering is if you need chemox. We are all here to lend support if we can so let us know if you have any more questions
Annice0 -
Joy-I see my BS tomorrow. My case will go to tumor board tomorrow afternoon. I see MO on the 19th to discuss tx.
Annice-my BS did a SNB and took out 1node. It had micrometastisis. She said the tx probably wouldn't change even if they found anything in another node, so she isn't recommending further node testing. I have mixed feelings about this. Isn't it important to know this?
The breast care navigator said she was not going to order the oncotype dx (said tumor was too small). But I asked the BS to order it and she said she would (this delay wasted a week...grrr).
I realize I may not need chemo, but fear I'll be borderline with oncodx. I'm grateful to have had the BMX -- and if all I get is tamox and maybe ovary suppression, I'll be relieved. But like many, I will do whatever it takes. So scary.0 -
Micro mets seem to be treated much more conservatively than fully infiltrative mets. From what others have posted about micromets and because the rest of your stats a so good it sounds like its tamoxifen for you if you are pre menopausal and possibly ovarian suppression like many of us here. I suspect you will not be offered chemox
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Hi all! I am also a member of this club ~ stage 1, grade 1, and premenopausal. Thank you Annice for starting this thread! I am going in tomorrow for my RO consult, simulation, and tattoos. I am 44. My oncotype was 15 and with my stats, chemo would have reduced my recurrence by 1-2%. As it is, with radiation treatment and then tamoxifen, my recurrence is 9%. Not the best, but my MO said definitely no chemo. Risks outweigh any benefit. I am ER/PR + at 80% each.
Are there any tests that I should be requesting re my treatment? Am I missing something? I'm meeting with a genetics counselor April 15 (first available date!).
Well, thanks for listening! 😊 Hugs to all warriors!
~ Amy0 -
Annicemd (and others): I will see my BS Tuesday to get the pathology results from surgery and see what his tx recommendations are/what is next for me. What I do know is that the one node biopsied was clear, and that my tumor was 1.1 cm. Given that the tumor was also found to be grade 1 (I think that hadn't changed--I got a sneak peak at my path report when I went to the PS Friday), do you think they will skip the ocnotype DX test? If they don't think I should have it, should I challenge them on that?
Am a little concerned that I might have to go in for more surgery--where things left off was the cancer was close to the skin; not sure if they got the margins they wanted. (The path report did come up with a positive; the PS just couldn't interpret the data--he wasn't sure if what showed up on the report my BS ended up taking out...IDK; will get more info soon). It is what it is. They put in a port on my TE just in case they recommend radiation (to deal with this situation).
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Hi BeHereNow,
I am wondering what size your tumor was. Mine was also small (2mm) and they told me they could not do the onco test. Just wondering what size your was to be able to get the test.
smo
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How common is ovarian suppression? I have not heard of that before.
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Oncs might want to skip oncoDX for tumours less an 1cm because stats are very good for small tumours but its a grey area.
Ovarian suppression is generally used as a more aggressive approach at present although there is a study in progress to see which premenopausal women with BC will benefit from this treatment. The argument for ovarian suppression is in estrogen receptor positive disease because it blocks/ lowers estrogen levels. It is not routinely used for this at present but is used when there are contraindications to tamoxifen. It has side effects because it effectively causes a chemical menopause0 -
Thanks, Annice! Very helpful
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For those that are on ovarian suppression treatment, what are you hearing about how long this treatment is prescribed? I am hearing differing opinions - 2 years only regardless of menopausal state, or continued OS treatment until natural menopause has occurred.
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http://jco.ascopubs.org/content/early/2011/09/06/JCO.2011.36.4950.full.pdf
http://www.cancernetwork.com/breast-cancer/content/article/10165/2077056
http://www.ncbi.nlm.nih.gov/pubmed/20620932
http://www.ncbi.nlm.nih.gov/pubmed/19821328:
"The optimal duration of LHRH therapy in the adjuvant setting is unclear."
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Joy...Above are links to the current clinical trials comparing OS. The reason why you are getting conflicting answers is because until these trials are completed...nobody knows....
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Yesterday I had my six month visit with my MO and my gyn. The great news is I'm doing "spectacular!" Those were the words coming out of the mouth of the MO! GYN told me I was doing "terrific." I'll go with "spectacular!"
According to the GYN, for the first time in 5 years (I was diagnosed 3 years ago), I do not have anything funky going on in my reproductive organs. My uterus is finally clean. Amen. Okay, so I still have the hydrosalpinx. But that is smaller. So, menopause has been kind to me. Quieted what needed to be quieted. Quiet is good.
Now...regarding endocrine therapy and the MO. Originally, he had told me 5 years of Tamoxifen followed by 5 years of an AI. Recall I did two years of Lupron and am now "officially" menopausal. He told me that I am still on the 10 year plan. However, he said I can switch to an AI if I want to. I told him that I had concerns about my heart risk. He said the following: Though patients who take AIs have higher lipids, researchers don't know if that is because Tamoxifen might be LOWERING lipids. So the difference might not be that great. I also know that elevated lipids is only one risk factor for heart disease and 50% of people who get heart attacks have normal lipid profiles. So, it was decided that....I could decide!
I just love it when the choice is left to me. I've always felt my greatest strength is letting the big boys and big girls who are the experts decide for me! I know how to read the literature but I don't have the experience of clinical practice to feel competent to make such decisions. Soooo.....here's what WE decided, I would do. Finish my Tamoxifen bottle, which still has about a month or so of pills in it. Wait three weeks and then begin an AI. If I'm having side effects, then I could go back to the Tamoxifen. Sounds like a plan. I do realize that the current NCCN guidelines say that 5 years of Tamoxifen is what's recommended for premenopausal women. So, he said I can't go wrong with either. Was there an edge to taking an AI? He said for patients who are at low risk of recurrence, the edge might be very small. So for us Grade 1, Stage 1 gals, it's all about choice. We are very fortunate to have more choices than other sisters.0 -
Thank you, VR. This makes total sense, as the clinical trials are not completed. I appreciate the links.
My initial thought is to continue OS past the 2 year time period, if needed, regardless of what comes out of the trials. I'm on the cusp of being menopausal anyway.
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Great info, VR. Thanks for sharing, and congrats on your "spectacular" news!
I had also heard that Tami lowers cholesterol, and my blood work for the past year in comparison with previous reports supports this theory. Although after diagnosis, I eat better and exercise more. So who knows?
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@VR - Glad your appointment went well!! I'm anxious to see if you feel any different with the AI!
I started taking Tamoxifen again last week, will have my first lupron shot this Thursday, go back in one month for another Lupron shot (which will last three months) and then switch over to an AI if my levels go post menopausal again so I can take my happy pills
. I think I will stick with the Tamoxifen through the Summer though.....just cause Winter is coming to an end and that is when I usually start to feel more like myself again!I'm sure I will have questions/concerns with the Lupron shot.....keeping my fingers crossed that all will go well!
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Wildrumara.... Don't be anxious in waiting to hear how I do....Don't be anxious about how you might feel as well. Let's just BE... and take it from there...One.Day.At.A.Time!
I wish you well!!!!!! Hang in there!Here's a great quote about worrying...same can be said about feeling anxious!
"Worry is like a rocking chair-it keeps you busy but gets you nowhere.”
― Katie Dale, Someone Else's Life0 -
VR--yea on such good visits! So glad you are doing spectacular!
I got good news: BS went over my path report today. No need for more surgery or radiation. He said he would go through my report one more time with the pathologist to be sure (OK, sounds like a guy who didn't do his homework...), but he's confident that we're past this part. Ordered oconotype testing and I am set for a meeting with him and oncologist in three weeks. Said test results would factor into the decision (but not be the deciding factor). Got the sense he's leaning toward chemo.
Got a copy of my path report--looks like the tumor got upgraded to grade 2. Reads: Tumor size 1.1 cm, 0.7 cm and 0.6 cm; Histologic type: IDC; Nottingham combined histologic grade: Tubule score: 2; Nuclear score: 3; Mitotic score: 1; overall grade: 2. Focality: multifocal. So I guess I no longer apply to this group...
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Renee....but you also got GREAT news! ....Your mitotic score was 1...Now that's also spectacular!
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I've always been a pacifist, VR
.Realized my BS did not tell me my staging. Have to think it's Stage 1, with my tumor size (largest=1.1cm) and no node involvement.
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...maybe a pessimist?
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Joy - I am on ovarian suppression (started in January), and my MO wants me on it for three years. Not sure what, if anything, she'll recommend at that point. I'll be 43 and very possibly still premenopausal.
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Renee of course you apply to this group! You are stage 1 and your results look good
The oncotype will help decision re chemo. Hoping for a good result for you x0 -
VR what a fantastic outcome to an appointment, I am all envy!!! It's actually sounds like it was a happy occasion! Sure you could not have envisaged that in the early days. You got a happy Gyn and BS in one consultation, awesome.
Your plan sounds great, very logical and which ever option you choose has a strong argument and evidence behind it, what a result.
Happy dance
...And thanks for the lovely quote which we must all remember at those times of weakness...
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Hi Joy I wish I had the answer re OS, i am on it and just waiting for the SOFT results
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Just got off the phone with my MO - Oncotype results are in and I'm a 26 - solidly in the greyest of a grey area. Both the MO and surgeon say it's basically a coin flip decision. Other stats are in my signature. The recurrence rate with tamoxifen alone is 11%, adding chemo brings me down to about 7-7.5%. I'm 35, single, but would like to keep the possibility of kids on the table. Planning on radiation and tamoxifen, and totally torn about chemo (do the costs outweight the benefits?????). Got a second opinion from another MO who said he'd only feel comfortable avoiding chemo if the Oncotype came back as 10 or less.
I'm totally at a loss here - anyone have any advice to share?
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Annice, glad I can stay!
Kaybee, you're farther along than I am, so I don't really have anything to offer. I know what I'd do, but that's a different matter. You've got to look at the reduction of likely recurrence, and make the decision as to whether it is worth the SE.
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Kaybee... Are you certain that the oncotypeDx recurrence score of 26 would be 11% with Tamoxifen? I just looked at the chart and I think the chance of recurrence is a little higher. Were you given a copy of your report? I would look closer.
I would also ask for either a third opinion or have your case presented to a tumor board if you still are undecided. Good luck.0 -
VR
YOU are always so kind and helpful to others. CONGRATULATIONS on getting spectacular news. Its wonderful and so deserved. Yeah for you!!
CR
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Hahaha VR. I'm not really anxious...just dramatic!!
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Kaybee do check your report. My onco score was a 23 and with tamoxifen my recurrance rate is 14%. I don't know what to say. You are young at 35 I was 48 at diag. I decided against chemo and went with the zometa protocal which my MO felt I was a great candidate for if I choose not to do chemo.
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