Stage 1, grade 1 and pre-menopausal
Comments
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A.A... You are suggesting that the medical establishment create a clinical trial for HER 2 positive patients using ovarian ablation BEFORE we discover the results of the SOFT and/ or TEXTS preliminary results are known for ER positive, HER 2 negative patients? I hope you are joking. Because I can't imagine a study like that being developed before the SOFT and TEXT trials preliminary results are known.
And with respect to the NCCN making only excuses why they are NOT following simple scientific principles are simply excuses? They ARE following the most simple scientific principle and that is First Do No Harm.
A.A. Once again, we are going around in dizzying circles with you. You are welcome to believe whatever you wish to believe is true about the medical establishment and how they go about seeking evidence that ultimately leads to life saving treatments while reducing risks and side effects that diminish quality of life.
However, I think most reasonable people will differ with you. I think more reasonable people will most likely agree that progress can and is being accomplished in the field of breast cancer research because of the simple scientific principle of first doing no harm. That is not an excuse. That is an excellent reason.0 -
Your point about the two trials would be valid if they could be applied to HER2 positive HR positive patients, but to adhere to the standards of the NCCN, HER2 positive HR positive patients would have had to be participants in the trials, and they were denied that option.
You implied that chemo may have protected me from recurrence, but fail to acknowledge that is highly unlikely.
Doing no harm, without obtaining proof that in fact no harm is being done by exposing greater numbers of patients to chemotherapy when extremely few among them benefit, is an ethical sham.
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A.A. The HER 2 positive patients would not be included before first understanding whether or not the HER 2 negative patients were helped. If you cannot comprehend this simple IMPORTANT concept, then there is nothing further that I or any other reasonable person can say to help you understand why HER 2 positive patients would not be included.
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Then why not use HER2 positive patients for the trial instead of HER2 negative patients, if the conclusions are identical for both groups, since there are fewer of them to subject to the test therapy?
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Perhaps it is so much easier to promote the use of chemotherapy by others as being such a great idea when you have never had to do it yourself.
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1. Just clarifying here with you ladies, my Onco DX scores ARE low, right? 6 & 13...?
Do some people actually come back with 2's--super low?
2. My biggest lingering mind-messing issue is that since they did NOT know I had IDC
in my L breast at the time of my BMX, I only had the SNB on my Right breast to check for positive lymph node invasion.
Right side was clear, thank goodness.
BUT, of course I'm left w wondering about my UNKNOWN Left breast side NODES since they found almost the EXACT SAME IDC in my Left breast during my BMX. Sigh...:( And now, they cannot do a SNB on it cuz of course there is no longer any breast tissue left to test.
The Tumor Board felt CONFIDENT that since the L side had identical pathology as the Right, that they could safely assume there was most likely NO node involvement in that side as well. **HOWEVER, there's really no way to know for certain.
So, I'm just wondering WHAT you guys think about this. Have any of you had this experience or know someone who has? And, it's my limited understanding that it would be overkill and unnecessarily risky to request that the docs go digging around in my L side nodes to check it out...that it would cause way more problems than it's worth...
Is that correct?
I just need to live with this UNKNOWN, right?
****Please, can someone help me here? I haven't seen/heard anyone else with this issue yet...
Thank You!
Violet0 -
Violet, I can totally get why that would leave you on edge. I could be wrong about this, but they'd get some idea about your left nodes from an MRI, right? Have you had one?
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Run,
I had US & MRI on that side right before BMX...am thinking I should insist on same at checkups to monitor.
Just can't believe I'm the ONLY one who has this dilemma here...
Violet0 -
Violet ~
1. Yes, both your oncotype scores were low according to today's standards.
2. I understand your concern about the unchecked lymph node side. I also think an MRI might help with peace of mind. Insurance paid for an MRI for me at one year out from mastectomy. I basically requested it because I had reached my out of pocket maximum and wanted to make sure the implants were good and also a little extra peace of mind. I think you can get an MRI based on monitoring the implants every two years because it is "recommended" in the implant literature. People that have breast augmentation don't usually do that because insurance doesn't pay for it. But in the case of BC, insurance has to pay for anything related to reconstruction. Just FYI.
I'm going to ask for an MRI this year as I've met my out of pocket maximum due to surgery related to an ovarian cancer scare. Yipee. 
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Violet - I had a surprise Idc too , and later had a SNB. Others said it is not possible, but apparently it was. There was a thread, I think in the lcis section and it refers to a study where the post Mx SNB was done in like 20 cases and they were able to do the SNB in 65% of the women. I'm choosing to believe my bs was successful. Also I had no lvi so that too is reassuring.
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Farmerlucy,
Interesting...I'll have to ask my 2nd opinion oncologist on the 23rd...
I don't understand HOW it would be done w no breast tissue left. Are you saying they did a SNB up in your armpit area after BMX? I'M confused
...???
Thanks
Violet0 -
Ok..FarmerLucy. ..
Just read your info. at the bottom of your posts.
So, I'd have to risk them going in there/another surgery...not sure that would be worth the risk of lymphdema, etc...them digging around in there...??0 -
FarmerLucy:
I DID find that thread you were talking about...sounds like MOST docs won't do Post MX SNB's. It sounds like it would be risky for me to attempt it now with the Stage 1a I have. Maybe I will just talk to the onc. on the 23rd & see if they will watch it/Ultra Sound that side when I go for check-ups...?
STILL. it seems like there HAS to be more women on here are experiencing/have gone through my dilemma...
Violet
Violet
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Hi Violet - Yes it is a dilemma. My right arm is aching, and I figured it was muscular, but if I raise it as to drain any fluid, it does feel better. I have not seen anyone, and I hope it goes away. Now I wonder if I should have had the SNB. Oh well. We can only do the best we can do. Hugs.
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Did anyone here had their babies after 35 years old ?
I didn't tool the pill. But my lump came after my first pregnancy at 35 years old.0 -
Srh that can happen because you are pumped up with estrogen in pregnancy. My youngest daughter was 7 when I was diagnosed but as I am grade 1 so who knows maybe it began in pregnancy... But I also took a lot of birth control pills over the years so have had more that my fair share of estrogen exposure
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Annicemd -- you said, "my youngest daughter was 7 when I was diagnosed but as I am grade 1 so who knows maybe it began in pregnancy." That is very interesting to me since I am grade 1 also and my tumor was 0.8 cm when I was diagnosed. Can it take that many years to develop a grade 1, 1 cm tumor? Is low grade cancer really that slow growing? That's a question I never had a chance to ask my medical team.
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Pam,
Hi. Yes, it can take years. And we'll never know for certain WHAT caused our cancers, so don't stress yourself out about it...I know it's hard/normal to wonder though...;)
I'm sure mine was at least fed by bc pills, which I only took cuz of horrible periods...sigh.
But at least we're Stage 1...
Violet0 -
Pam as Violet has said it probably takes many years for low grade tumours to develop, no one knows any exact facts on this but there are some theories around. Some one on this site, different thread wrote something a while ago sourced from a scientific article that grade 1 tumours probably take a decade or more from first mitosis to clinical presentation. Sorry I can't remember the details though. But I have also read this elsewhere when I was busy researching everything about why I had got this disease! Now I am busy living my life again I am not reading about these things quite so avidly 😊
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Very interesting. Thanks Violet and Annicemd!
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Hello all--I have been following this thread since the beginning and appreciate the discussions. Recently I was browsing the breast cancer section of cancernetwork.com and found this article from the journal Oncology:
http://www.cancernetwork.com/breast-cancer/content/article/10165/1779752
Bottom line: By measuring time to local/regional occurrence after only surgery, these researchers estimate that the typical age of a breast cancer at diagnosis is 5 to 6 years.
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Thanks for the link snorkeler. It's an interesting paper. It's certainly clear that our lazy grade 1 tumours were with us for many years before we knew!
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Hi ladies. I seem to fit in with all of you 5 weeks over with myvsurgery and Im Grade 2 Stage 1 Pr,Er+ and Her2- .1cm in my left breast and 0/3 lymph nodes. Ive just had my Oncotype test done and ImwIting for results actually. But it leaves me with a confusion on what to do about Chemo. Tmy K67 came outborderlineat 20 per ent level. My Oncologjst strongly recommended I do the Oncotype as he saidwithout it Id needChemo due tomy K67. I seem to have notj ed that majority of you have only done hormonal therPy and radiation. How accurateis the Oncotype test? My cpusin fromDingapore sbowed my results to her Oncologjst there and he said Oncotypetest is a waste of $ and that its. Ot considered accurate i that side of the world and yet here I am finding so many of you having done this test. It scaresme if Idontdo the chemo and I have a re curence that turns out worst? But on the other hand all those chemicals in d body killing the healthy cells trpubles me as well. So please let me know about ypur experiences and thoughtsIdreally appreciate it.
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Lav, my diagnosis is almost identical to yours (I had >20 Ki67 considered high). I had the oncotype done and it was "low" and my onc said no chemo. Said tamox would be my best weapon as I was highly ER/PR+. He didn't base it all on the oncotype, but said it is a great tool if you are on the fence. (I was with my age (43) and high Ki67). My onc is a highly respected doctor that has specialized in BC for decades and goes to all of the conferences, etc. For what it's worth.
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Wow Susan thanks a whole lottttt! Im so much more at ease reading your post. Did you have to do radiation though? Hes suggested 30 Radiations forme. How are the side effects of tamox for you? Im worried about the thinning hair,depressjo. And mood swings, going thru some family crisis that has me depressed as it is plus due to all that stress with alot of hair fall. Thank you thank you thank you! Youve just made my day. Just waiting anxiously for my Oncotype result though Im positive it will come out low. God bless you for replying:))
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Lav-- my ki-67 was around 25% (high) while my Oncotype score was an 8. I made my oncologist go back to the tumor board again to make sure whether or not to do chemo. I ended up not having to do chemo, and my second opinion oncologist said the same thing. I've been on tamoxifen for a few months and my biggest side effect is some sore joints (just feels like I've hit the gym a little too long). I have very little side effects other than that and have not noticed thinning hair. I'm also taking a biotin supplement which supposedly helps with hair and nails.
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Cuetang I noticed you had 2 tumors? Did they appear together or one after the other? Thanks for your replying Ive been reading alot of the posts and sometimes it gets confusing as some say its better to do the chemo rather than having a reccurence but what about the unnecessary chemicals in our body.... I guess if its meant to be its meant to be. Keepingmy fingers crossed whatever is good for me shall appear on my Oncotype results...
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My Ki67 was 22, and my oncoscoredx was 3. I've wondered about the discrepancy. I have to imagine there is some subjectivity in the Ki67 score generated my the pathologist. Ki67 is one of the measurements in the oncoscoredx, so I figured something is balancing it out. No chemo for me. My first onco said there could be an argument made for not taking tamoxifen, but after a mis-start I am.
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Lav,
Praying your Oncodx type comes back LOW...;)
I see my 2nd opinion Oncologist breast surgeon on Monday...I have TONS of ?'s for her. My biggest question is SHOULD I have blood work & scans done because I have serious PMPS/NEUROPATHY on my L side..
.***AND my BONES are achey all over...I haven't had chemo or rads nor Tamoxifen, so the bone aches can't be from those things.
**Do you think it's important that I have a CT or PET Scan?
I had my first post BMX 6 month checkup in July...no scans or bloodwork...
My L side pain started way before my Exchange surgery...
Annice? Vor?
Thanks for any input here. ..
Violet0 -
Violet-- no helpful input here, but hoping that the aches go away soon!
Lav-- I had a bilateral mastectomy and intended the right side to be "prophylatic". However, in the final surgery pathology, they found 0.15mm of DCIS, that's why I have that in my signature. All doctors said it doesn't change my treatment plan. However, like many of the wonderful gals on this thread, I've resigned myself to the no chemo decision and am looking forward to the SOFT trial results that will come out in the near future. Another vote for low Oncotype score for you!
Hope everyone else is doing well. I start Lupron next month -- eek?
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