Stage 1, grade 1 and pre-menopausal
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Thanks Annicemd. Appreciate the info.
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voraciousreader Cheers ...... thanks for the info.
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cheers I love the wine idea.
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Cheers to all !!!
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Saw my Oncologist today and based on the size of my IDC just 0.6mm and grade 1, it was agreed that I can be discharged and have no treatment. Although I am 90+% ER+ and PR+ and pre menopausa lthat that did not seem to add or subtract much from my statistics for reoccurence. I could have pushed for Tamoxifen or even chemotherapy, but felt no need to do so as in my eyes the SE outweighed the benefits in my case. I am just very grateful.
Thinking of all of you that are having to start treatment or are in the process etc and hoping that the journey is a smoothe one with very few twists and turns. Big hugs to you all and thank you for being there when I needed someone to vent to.
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Just checking in as I catch up on all the new information . . . . thanks for the very enlightening research VR . . . you are as always amazing.
Just had 2nd Zoladex shot . . . so far, so good. Headaches are hitting me but they are tolerable. Hysterectomy scheduled for 5/7 with 2nd stage of reconstruction as well. Not sure which AI I'll end up on after menopause is "declared" but sure love the information I am gathering from y'all.
Thanks as always for keeping the education happening!
Hope everyone is keeping healthy and moving strong!
Kelleyod
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Hills, that's awesome that you don't need any adjuvant treatment! At 0.6mm the data appear quite robust for no tamox. Do you not need herceptin either? What a result!!
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Need to rant a bit - sorry
My last appt. 2 months ago, with the onc here in Budapest finished with him telling me that my prognosis is excellent, to continue Tamoxifen and consider ovarian suppression. His opinion is that my BC is a "blip on the medical chart" and to not be worried. Fast forward to now - I have been trying to get further information from him on what an ooph or suppression means to me, relative to reduction in recurrence, SE's, etc. I am getting no response from him - he has no interest in me at all. Our private clinic has no cancer care, so I'm at the mercy of this particular onc that I've been referred to, that speaks English.
I am scheduled for onc appt.'s in the States, when I return in June. Should something come up in the meantime, don't know what I would do. sigh ........ I'm very grateful to not have a more serious prognosis - but it sure is frustrating to not get any attention at all.
Rant over
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Hils....I would have a second or third MO opinion and/or have your case presented to a tumor board because of the HER2 Positive status. Dancetrancer who had DCIS and a .3 mm IDC that was HER2 Positive had a similar dilemma. You can read her thread which includes all the current research. Here is what she said after having three opinions, including MD Anderson. In bold letters is the name of the thread:
< 5 mm HER2+ IDC...why NOT chemo???
Apr 17, 2012 09:52 pmdancetrancer wrote:
Jill, I'm sorry, this is exactly the dilemma I faced as well. First onc said no chemo, didn't feel the recurrence risk was high enough and didn't trust the retrospective studies from MD Anderson. 2nd onc said yes, definitely need chemo. Third onc said he would treat me if it gave me more peace of mind, as the biology of the tumor (HER2+) does play a role. I finally went to MD Anderson, and they did feel my risk was higher b/c of the HER2+ combined with being younger; they strongly recommended chemo/Herceptin. They feel biology of the tumor definitely trumps the size. Of course this is all based on their own research. I chose to put much stock into their recommendation b/c I feel they have done the most research on tiny HER2+ tumors. This is all so very controversial, and it makes it incredibly difficult to make a decision as a patient. I finally decided I didn't want any regrets ie. finding out a year or two from now that I had metastatic cancer that could not be cured. I agreed to at least try chemo...with the mindset that if it was just too difficult or I encountered any really bad side effects I would stop and then continue the Herceptin only for the year (Herceptin has risks, for sure, but is much better tolerated than the chemo, and it targets the HER2+ receptor).
I hope this helps, I totally understand and feel your pain. You may want to read back through this long thread and read all of the research info presented/debated and the thought process I went through.
DX: 7/29/11 at age 43: Stage 1A on L (t1a, 3 mm IDC, Gr 2 ER/PR+, HER2+) 0/3 nodes with 6 cm DCIS; also Stage 0 on R (2 mm DCIS Gr 2). IDC was missed on L by first 3 path reviews; see bio for details.
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Joy....I am sorry you are frustrated by the lack of response from your physician. However, if you read this thread, or google search the SOFT trial which compares ovarian supression with/ or without hormonals, you will see THERE IS NO DATA AT THIS TIME CONFIRMING WHETHER OR NOT IT IMPROVES OUTCOMES. Surely, your doctor knows this and owes you an explanation. When I was diagnosed, the doctor told me that I could "consider" ovarian supression but that there was no evidence at this time supporting it.
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Joy as you are nearly average menopausal age anyway the risks of ovarian suppression are minimal. I am 42 and happy to have it despite the data being incomplete.
Re her2 and tiny tumours, as a doc myself it is clear to me that the Md Anderson has a robust international reputation for being the best in cancer management. I would always go with their recommendation.0 -
Hi Voraciousreader - you are totally correct if my IDC had been Her2+ I would have been having chemo and Herceptin, fortunately for me they screwed up my results and they originally told me that I was Her2+ but that was an error due to a faulty piece of equipment. Luckily they redid my tests and I am in actual fact Her2-
A bit of an emotional rollercoaster, but this seven month journey has been like this throughout, being told one thing and then something completely different - so I should have been used to it.
On the positive side I am now cancer free and the only thing I need to concentrate on is the reconstruction of my breast. Thank you everyone for your thoughts and advice, without you all I think I would have lost the plot
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Hi Annie
I am so dippy my IDC was 6mm x 3mm, stage 1, silly me and decimal points. Sorry for giving you the wrong information
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Ah Hils just glad all is correct with your treatment, it all makes sense as you are actually HER2 neg.
Did you have unilateral Mx? When are you doing recon? I had my exchange and augment on the good side on Wednesday this week and very pleased with result
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Annice...glad to hear you are doing well!
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Hi Annice - yep had my unilateral mastectomy on the 6th March with TE and these are slowly being filled. Looking forward to the exchange etc, but have no idea when this will occur other than sometime in 2012. Great to hear that your exchange went really well and that you are pleased. Excellent news
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Anice glad you are doing well following your exchange.
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Annice Great that the exchange went well and that you are pleased.
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Thanks all!
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well I just received my lab work from the endocrinologist and in six months I went from no where close to menopause to post menopausal. My mom always said she went through menopause very quickly so I guess I got lucky here. Now wondering if MO will keep on Tamox or change me to an AI. I see him on Friday so I guess I'll get his opinion then
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Hi Sherryc, welcome to menopause! Have you had symptoms? It can fluctuate inthe beginning so I suspect they will not rush to switch you to an AI. However some oncs like to switch at 2 years in post menopausal women, I have seem both approaches used. Happy flushing
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Hi Everybody. I'm only few hours old on this board and I learned so much already. At the moment I am having a hard time trying to come up with a decision to have chemo or not. My onco is 12. From the very first time my MO told me I dont need chemo. She wants me to take instead Tamoxifen and possibly an ovarian suppresant. I'm only 44 and have a 3 1/2 year old and I want the maximum treatment I can get. But I feel like nobody is giving me enough information that I could actually base and weigh my decisions. I already told her I wanna do chemo but she is still discouraging me because of my low onco score. I called Stanford to have a second opinion and it cost $830 dollars to talk to the doctor and plus the cost if they want the pathology result reread. I'm willing to pay for it, if it would give me peace of mind and come up with a decision I think is good for me. However I had been reading here that some women had 2nd-3rd opinion but still did not get their questions answered. I have never been so stressed like this.
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p22nut5. From diagnosis time until choosing a treatment protocol is the most stressful time. If you read this thread you will note that there still are many questions that cannot be answered because the clinical trials have not yet been completed. Besides getting a second opinion, you can ask that your case be presented to a tumor board. Tumor boards meet every one or two weeks and discuss various cases. It includes surgeons, radiologists, medical oncologists and pathologists.
Ultimately, you will make a decision that seems right for you. You might have an epithany or even a bad night's sleep that will have you waking up in the morning knowing what not do. Likewise, you can sleep well one night and wake up just knowing what is right. Gather as much information as you can. Check out the NCCN 2012 breast cancer treatment guidelines. I recommend you register on their website and read the professionals guide as opposed to the patients. Read the footnotes too.
I wish you well.
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Thanks a lot Voraciousreader. I checked the website and it says that on my case I should just do tamoxifen and +/- ovarian suppresant. I am so lucky to have found this community. I just wish I have found it so much earlier. My MO did took my case to the board yesterday. As expected some said NO and some said YES. I had been reading all day about everybody's decision about their own cases. And I'm hoping to come up with a decision too at the end of the week.
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p22nut5, I have pasted below a post of mine that I put on another thread just yesterday! It is relevant to your questions as I have similar stats to you. I also have young kids, my youngest is 7. If you have features of lympho vascular invasion or other adverse histological characteristics, that might sway you towards chemo. My decision to stick with tamox and ovarian suppression was also a difficult one and made last year after much deliberation. I am now, several months later, content that it was the right decision for me and getting on with my life!
Hope this helps,
Best wishes...
10 hours ago
Annicemd wrote:
Just to throw in my story- i am a medic, decided not to have chemo based on node neg, low onco scores (8 &1), less than one cm primaries ( although 2 of them) and her2 neg. if these stats were any different or if I had been even one node positive I would have opted for chemox defo. As no chemo, I am having ovarian suppression with zoladex as accumulating data suggest that at least some of the benefit of chemo in early stage premenopauseal BC is likely to be related to the chemopause it induces, although the definitive study is a long time off being published. It is a very fine line between risks and benefit of treatment for early stage BC. The fact that we have all had different experiences shows that there is still a lot more that our oncologists need to learn about this disease!
Best wishes
Multifocal IDC, oncoDX 8 & 1. No chemo. Left Mx, delayed recon. Tamoxifen & zoladex
Diagnosis: 6/22/2011, IDC, 1cm, Stage I, Grade 1, 0/10 nodes, ER+/PR+, HER2-
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Annice I started tamox a little over a year ago and right off the bat starting have hot flashes. So I don't know if I would have had any not on Tamox. However, I was off of Tamox for 6 weeks for my BMX and did not have hot flashes at all. I have been back on Tamox for 10 days and the hot flashes have started back up. So for not as bad as they were before so we shall see.
P22 making the decisions are hard. I had a onco score of 23 and was 48 at the time of diag. I received two opinions and both did not think chemo would give me enough benefit so I opted out of chemo. However the MO I choose to stay with was following the research being done on Zometa, so he put me on Fosomax until the study was complete and now I am doing a Zometa Infusion every six months for three years. I was uneasy about not doing chemo, but once I started the Zometa I feel like I am doing something and I had no SE's. I am now at peace with all of my decisions and life is looking really good from where I stand now.
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Annice I just realized now that I am post menopausal do I have to leave the group I love these chats.
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Sherry... Thanks to two years of Lupron and close to being menopausal... I am close to being officially menopausal and I am still here!!!
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Just curious - when do we know that we are officially in menopause?
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Joy... My oncologist and I agreed to do 2 years of Lupron injections because that would put me out to age 55. Both my mother and sister entered menopause at that age. One month after completing the Lupron, the oncologist began blood tests to determine my estrogen level. So far, I've gone twice over the last 4 months and my estrogen levels have remained low. When I have my next Zometa infusion in June, they will check my estrogen levels again. The doctor assured me that if my estrogen levels begin to rise, then I will resume Lupron injections. My understanding to be truly menopausal, the estrogen levels must be low for a full year. So I'm destined to be followed for the forseeable future......
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