CALLING ALL STAGE I SISTERS
Comments
-
Gorgeous, been reading and not posting much, but sending you best wishes and good thoughts. We all have your back and be with you in spirit. update when possible. hugs..
0 -
Hi everyone,
Thank you all for your prayers and well wishes. I am pleased to say that the surgery only lasted 21 minutes and the margins are clear. I go for follow-up next week and I am progressing greatly. Hugs and Kisses to All
0 -
This is me.
Was diagnosed in late March with a lumpectomy in May. Currently getting radiation that will be followed by hormonal therapy. I am very glad I saw this thread.0 -
OK so does anyone think I should get a second opinion (maybe it is too late) and have the oncodx done? I want to be sure I do everything possible but the IDC part was only 1.1 mm!
0 -
Beth my tumor was 2mm and they told me it was to small for the oncodx. I had a few second opinions and they all said the same thing. Did your Onc. tell you it was something they could do?
0 -
BosumBlues, I was just griping about that on the Arimidex thread! I'm not in a good place with this 5 yr, 10 yr, it's a crap shoot, stuff! No data to know if what we are doing is right! I agree with what you are saying!
0 -
BosumBlues, I'm gonna have to type out your questions so I take them with me to my MO. You say it better than me!
I knew I wanted to be called a Mema years before I had the first one! I saw a little old lady one day get into her big Cadillac. She was at a McDonalds! Her license plate read "Mema" and I knew I just had to have that name someday. How ironic now that I drive a white Cadillac SUV! It was easy for the kids to say. I did tell my 15 yr old DGS he could call me something else now if he keeps him from being embarrassed when he introduces me and he didn't like that. I thought saying Mema might be too kiddish. He still likes it so guess I'll always be called that. Tried to get my DH to be a PePa but he wouldn't. Bad sport he is!
0 -
smo...no my oncologist said he wouldn't do it on one so small and my breast surgeon agreed. Actually he said he "doesn't" not that he "couldn't"....hmmm
0 -
And I was stage I grade 20 -
BosumBlues, how is today going for you? You're on my mind
0 -
I am so sorry you have to put up with that chit. I've been divorced twice and know how bad it can get. I spent some time sleeping on the floor and borrowing money to pay rent. I came home once and everything was gone except for my clothes, they were in a pile; even the bank account was cleaned out. So, yeah I get all that but I can't imagine going through this with that happening. I hated having to ask for help but know it's temporary, whether it's money or getting someone to help you with whatever, it will work out. Not with this jerk but once the paperwork is done that will be one less thing to mess with.
Unfortunately, my grandkids live in NE Oklahoma. No way my DSIL would let me live too close to my DD! Smart man cause I'd be interfering with those kids all the time!
Sounds like our DX is very similar. I'm having the tattoo part of reconstruction next month. That should be a thrill. Please take care of yourself. I'll keep saying a prayer for you to get some relief soon from the drama~
0 -
He says orgami...reminds me of the paper birds. I really didn't care if I one or not. Peer pressure! And you know, He always hears, we don't always listen nor does he gives us the answer we are looking for whether the timing is off or whatever, but He does hear. He brought me from the depths of hell when I was one step away from joining Him so he'll help you too. In the meantime, let me know how I can help!
0 -
Hi Bosom..no I didn't have the sentinel lymph biopsy done. And my prayers are with you in your situation. I'm there as well, divorce etc..and God never forsakes us. Smoo
0 -
Beth,
My mass was 1/2 the size of a pencil eraser and they did an onco on me. Insurance covered it, because if it rules out chemo, its much cheaper for them to cover the test. My onc said in very small cancers, it is important. Also, in young women, (under 56) regardless of the size, its important.
0 -
Now I am wondering why doing the ONCODX test was NEVER mentioned to me by either the BS or the Oncologist!
MENA
0 -
Beth, I was wondering did you have the option of not taking Tamoxifen? I was told by 3 Onc it was my decision because of the size of my tumor. I saw my Onc today and he told me he thinks I am being over treated and the SE might be worse than the actual benefits of the drug. He told me Tamoxifen is giving me a 1% benefit. Since I had a BLMastectomy he said not to worry.
Your tumor was also tiny are you taking Tamoxifen. (I was stage/grade 1 and ER+) Such decisions.
Sharon
0 -
Sharon I was told since I had invasive cancer I had to take it. Even if it had ended up just being the dcis it might have been on the table according to both my breast surgeon and oncologist. I honestly this far have had no real side effects except dry skin.
0 -
Thanks Beth. I have been on it for 2 years now and the thing that is bothering me is I now have cataracts never had those before. I was also told by the Onc at MD Anderson 2 years is better than none, no data for 2-5 years and 5 is the best. I think I will stick with it for at least 2 years.
0 -
Hello I'm new to the stage 1 BC sisters . I have posted to other areas but just found this one .Heres my story. I found a lump in my left breast didn't show up on mamo or sonogram . Went to see a surgeon he removed it said He believed it would be begine. Wrong! path found a 4mm tumor . Then did a centinal node surgery negative then MRI negative. Now doc is sending me to radiologist tomorrow morning.says I only need radiation.i had an identical twin sister that had BC she passed away a year ago (not form breast cancer.) she never had mammograms so hers was more advanced than mine she went through double mastectomy and chemo . I miss her it feels like a part of me is missing. I was with her through all her cancer treatment . I have a question maybe someone on this site maybe can answer or let me know of a forum that will help me. In 2010 I was diagnosed with cardiomyopathy. Can I have radiation with this heart condition.and if so is it going to be effect my heart. Appreciate any input from someone that has gone through radiation with heart daises.i don't think it has really set in that I have cancer because all the drs say it's the best case senecio if you have to have it.i have read a lot of post on here it's amassing all the different typs of treatment with stage i I am surprised at all the mastectomies there are with stage 1. I may have to rethink this. I will know more tomorrow .thanks for listening . Thanks Susu
0 -
The drugs are because your cancer was hormone receptor positive. Part of the Oncotype DX testing indicates the percentage for reoccurance if taking hormone therapy .I am wondering if the ONCODX wasn't recommended because you went with mastectomy and the tumor was so tiny?
My doc said they save tumors in blocks of numbered parafin for years and years and if the cancer returns, they can still shave a piece of your old tumor and do more testing years later...... So if your tumor was saved, you could still do it.
0 -
Oops, Bosum, I misunderstood. I don't know how he could do that either......I'd love to know that number too.
0 -
So the docs I have seen at John Hopkins, Karmanos and Beaumont in MI told me the figure they use is for every cm of tumor there is a 10% chance of recurrence. And since I did not have node involvement and low stage and grade and double masectomy and 2mm tumor they came up with the number of 1-2% chance of recurrence.
Now when I went to MD Anderson they told me 5%. So, still not sure what to do with Tamoxifen but I will stay with it until things get worse with the SE.
0 -
My MO said that with my score of 12 I have an 8% chance and without its a 16% chance. She said that Tamoxifen (and other hormonals) bring about this 50% reduction.
0 -
My oncotype score was 18 which indicated an 11% chance of distant reoccurance in 10 years assuming 5 years of tamoxifen. I asked my MO what the % rate would be without tamoxifen and he said around 20%, but that lifestyle choices (daily exercise, good weight, etc.) would bring it down another 3-4%.
I didn't ask but I am hoping that the extra 3-4% reduction from healthy choices would apply when taking tamoxifen too.
The MO also said switching to an aromatase inhibitor in a couple of years could add an addtional 2% reduction in occurance. Then I asked the question that none of them seem to have a clear answer to:
Studies seem to show benefit of aromatase inhibitors over tamoxifen for preventing reoccurance, but do they provide an increase in overall survival? I think I almost detected a grimace in his expression and then he answered: Well . . . while individual studies haven't shown that to be the case, when you look at the meta-analysis (my vocabulary is certainly expanding since cancer) of all the studies there may be a slight increase. The words "may" and "slight" stood out to me.
So my take away from all this so far is that while we have so much more information about our tumor type than ever before, so much is still just pieces of an incomplete puzzle.
0 -
Sunshine, I was interested to see that your Mo said 8%/16% with oncotypeDX 12. Mine just told me the test didn't count if you don't do the hormones. I think he may have been worried I would not do them, which I will unless the SE are really bad. When we discussed the test originally I thought about it for just a few minutes as I wasn't sure about chemo. I was kind of tired and mumbling about being nearly 60, not 35 with kids. He was quite insistent. He also said if I was 35 he would have locked me in his office until I agreed to have it done.Lol.
Funnily enough the 16% would actually match the tumor size of 1.6 cm.
0 -
I asked two doc what my percentage would be if I didn't do it and since I am on the cusp of menopause T is like 30 - 40% effective. My score would go from 4 to about 6 - 7 %. You ladies may not think this sucks, but at my oncotype of 3 my recurrence is 4 (grrr) and if it were 0 it would also be like 3 - 4% - at a certain point we have to give back points. (double grrrrr). I was in the nineties for ER PR, but I don't think the docs quoting that used anything but the oncotype. Manu - glad to hear your doctor noted the extra boost from AIs. We've been discussing that on another thread and the consesus was that we do get a boost when we go to AIs (Gotta get every point we can.)
I think we always get hung up on our own uncertanties. Mine is "what were the 3 dimensions of the tumor, and why did I only get one measurement on the path report?" Oh and BB - at 1 mm less we would have been in a whole other class.
My onc said she wouldn't have much trouble with me not doing T for that particular tumor, but given my family history she really recommended it. What? What? I wonder if they know we hang on every word they say.
0 -
BosumBlues, No thankfully I didn't have to do chemo. He just really wanted me to get the oncotype test done to rule it out.
Actually I just found out something else about oncotypeDx that I didn't know. I didn't realize that my MO had put my results on the website where I can view all the reports and lab results. I had not logged on there for a few weeks. The oncotype results also showed the ER, PR HER2 scores that looked a bit different from the pathology report from the lumpectomy. The lumpectomy had me ER+(80%) PR- but the oncotypeDX showed PR+ based on their criteria (I am not sure what my pr score = 6.6 means but it is in their positive range).
I did speak to the company that does the test in California once when they contacted me about billing. They were REALLY nice. They put me through to a tech to find out when it would be done. He volunteered to explain the test and answer any questions I may have and told me to call them if I had any more questions. Now I have the additional info on PR status I can ask the MO about it at my next appointment. My guess is that PR is just slightly positive but I am curious.
0 -
Sometimes I think knowledge is power but it does also bring more questions. I was diagnosed with ILC which is sneaky and sometimes occurs in both breasts. I understand that the chance of recurrence is low but I do wonder if another primary or LCIS could pop up or be hiding undiscovered on the other side. My understanding is that the hormones will reduce the chance of that too. Also the side where the cancer was found was the one that has had occasional problems with cysts and feeling a bit swollen over the years. The MO does not think its a problem for the left breast and neither did the surgeon who seems very up to date on things.She just wants my next mammo to be done at the hospital rather than have a routine screening. I feel comfortable that I can live with the decision to just have the lumpectomy (MX never suggested) on the right side without stressing out too much over it but I can definitely understand why some would opt for BMX.
0 -
hi Sisters..welcome
I'm so glad this thread was revived again.
They didn't do oncotype test when i was Diagnosed..
My Er was 90% PR 10%
I was 10 months post menopausal plus HER+ so I got all the treatments from chemo to radiation
Herceptin for 1 year and Femara for 5 years
I only had lumpectomy
i see my MO every 6 months and he does Tumor Marker Blood work....Not many Doctors beleive in it but he does it and i feel better about it
Hugs to all
sheila
0 -
BB...I consider myself lucky don't think about it that much
Reasonable assurance kind of YES
Sometimes It feels like a bad dream
Meanwhile i feel blessed to see my first granddaughter who is 3 months old already
hugs ♥
0
