Stage 2 Sisters Club
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Well, I think I belong here. I previously posted under Feb 2014 surgeries. I had a lumpectomy 1.1 cm stage1c, grade 2. Three nodes removed negative. No breast cancer history in family, but cancer. Oncologist ordered Oncotype test waiting for results. Somewhere around March 10th I should get results. Waiting is the hardest part want to get on with chemo or radiation to get this over with. Onc wants to do chemo if over ten. That seems aggressive to me. Would love to hear how you made the decision to go with chemo and what your score was. Any advise much appreciated.
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10 sounds alot lower than what most mo say- more like 18 as the high end of the range...
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flagirl, I agree with aviva. My MO Said 18 on onco test as the line. He draws pictures and notes and I we not back to them to make sure I didn't miss anything since we met on Friday. He is a participating doctor in the clinical trial. I am also waiting for my onco score to see if I qualify. We both agreed to the trial so I have a 50% chance of no chemo if I have a low scoe. Even if I am part of the chemo group I feel really good about participating in a study that helps the sisters behind us. I am 3rd generation (BRCA neg) with an 18 yr old DH and am fine with the odds!
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flagirl, what is your age?
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flagirl...a 10 score is a low score. BTW mine was 11 and mine is considered low risk. It may be your age - if you are young they want to throw everything at the cancer and it may also be the grade of your tumor. Mine was Grade 1. From what I understand Grade 3 is the most aggressive. Still the low scores from Oncotype are from 0 to like 18 I think; then intermediate and anything over 30 is considered a high score and high risk. So if I were you I would ask why he says 10 is the cutoff. Diane
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edwards750 I just turned 60, I am a young 60 yo who is pretty active. Just found out the test didn't go to pathology dept til 17th so now out another three wks probably. ugh! Yeah, I thought that 18-20 was the borderline. When I took the mini test I scored 14-16 let's hope that's where I will fall out. NO CHEMO lol
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Let us know when you get the test results flagirl...and definitely praying you don't have to do chemo. Obviously we would and will if we HAVE to but lets get real no one wants to. My prayers were answered; I hope yours are too. Diane
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Mmtagirl- Participating in medical research will give you much closer monitoring of your health than being a patient in other settings. Protocols require having all eyes on patients. You will be glad you did. And you are definitely helping the sisters coming behind us. Thank you for doing that and hope you get a low score of test.
Edwards750 - Welcome to thread. Lots of support here although we have been pretty quiet lately. Best wishes with your oncotype as well.
How is everybody else doing? We had 2 sisters and Joe's cousin undergoing chemo. Hope that is going as well as possible. My chemo was pretty awful, it had to stop a bit early bc of neuropathy. Counting that what I did get did its job.
Love, Nisa
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Hello Nisa and all. Just popped in to say hello. Chemo stinks but it does do its job! You mentioned my cousin undergoing chemo for his colon cancer. Well, he had three treatments and his cancer markers, tumor markers, or whatever they do to measure that, is way down. In fact, they dropped so much and it shrunk the tumor to the point where he will do surgery now, then continue chemo later.
I think of all of you everyday!
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Chemo is not fun; but if indicated, it can literally save your life. Remember that chemo is not the enemy, cancer is.
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Nisa - hope your neuropathy eases. I cant even begin to imagine what all you troopers went thru. This is a chapter i am ready to close... I know it will never be "closed" but atleast the hardest part should hopefully be behind all of us soon!!!!
Looking forward to spring and a fresh start!!! New birth! Looking forward to celebrate with a new matching tatoos with my kids - a butterfly with "sometimes change is beautiful" after my 1 year mark!!!
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Well said Ruthbru!
And I love the tatoo idea!
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Hi everyone,
I'm new on this thread. At one point I thought I was going to be a Stage 3. It got complicated because I did preoperative hormonal therapy and had 3 surgeries so my tumor was shrunken and sliced into before it was actually removed. So, I'll never know the actual stage. Anyways ..... it's all gone now!! Yay! My Oncotype was 10. I feel fortunate in that I didn't have to do chemo or rads, so I'm done with treatment. I'm 6 weeks out from my BMX and now just concentrating on reconstruction.
It's been a loooong winter. I'm looking forward to spring - with new foobs and the start of my new life after cancer!
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bc101-Hello! So I was just wondering how you were able to get out of chemo since you had a positive lymph node. That is why I have to have chemo. I have been hearing that some are getting hormonal treatment instead. My lymph node had macromets, rather than micro, which made a difference as well. Anyhow, glad you're healing well!
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Alli- have you asked your MO about the oncotype dx test? It was originally on early stage, no lymph node involvement, er pos. BC. Many MO are now doing it on 1-3 pos nodes as a result of the current clinical trial. I am waiting myself on my test result to see if I qualify for the trial. You may have other factors contributing as well.
Best,
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Xrayalli,
I was told that because my cancer was ER/PR + and also because my Oncotype test score was 10, that chemo would be of no benefit for me. The Onco was done before surgery and determined the course of my treatment plan.
My positive node had micromets. Having a large tumor and a positive node was very concerning to me, but I had two different opinions -- one at a university breast cancer center and one at the Mayo Clinic, so I'm trusting their judgement. My tumor shrank dramatically with the hormonal therapy -- just not enough for a lumpectomy. I think my docs were impressed with the surgical pathology after my MX. It showed the tumor was 60% dead or dying. So, the AI's kicked my cancer's butt!!! I'm confident that this is the most effective way to prevent it from coming back. I'm supposed to stay on an AI for the next 5 years.
It's interesting to read this thread to see the differences in treatment for Stage 2.
If your docs haven't mentioned it, I'd highly recommend asking about the Oncotype DX test.
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HI Xrayallli,
Yes, definately ask your surgeon to send your tumor to the Genomics health for the Onco type test. It will tell if your tumor will respond to chemo and the benefit gained for you from it by calculating a recurrence score. I was young with BC so even without lymph node involvement I had 2 Oncologists state I should have chemo and 1 said he'd not recommend chemo (only 3-4% benefit). Of the 2 that said I should have it it was based on my young age and size and grade, not the Oncotype dx test results. I ended up not electing chemo , had surgery , rads and use an AI.
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My MO and I talked about chemo for me for lots of reasons. My story is long and drawn out, it's had too many surprises. We've decided on chemo and I would feel too uneasy without. My breast that was removed had 3 different stages of breast cancer going on. Macromets in a lymph node was bad news and I'm young. As we all know, our doctors as well us ourselves take tons of info into consideration to make the best informed decision.
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Of course I did not 'like' doing chemo; but in retrospect, I am very glad I did, as mine was a large 'out of nowhere' aggressive grade 3 tumor (6 months after a clean mammo). Even with negative nodes there was a 50/50 chance that micro-cells had already escaped into my system. I'm not much of a gambler, and I wanted to stack the deck of never having to go through this again as much as I could in my favor. Chemo was part of that (as was Arimidex, exercise, keeping the weight down, taking a daily low dose aspirin etc. etc.) This is just my own personal opinion; if doctors say 'no' or 'yes' about chemo, then you should do what they recommend. But if they are split in their recommendations, or if they told me to decide for myself, then I'd opt to do chemo.
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flagirl
My decision to have chemo was made by me after reviewing my oncotype with my MO--- she is a big fan of the hormonal therapies and thought I would not need chemo--- so we were all surprised at the 26 oncotype. It was in the "gray" area at the time....
No one "told" me to do chemo--- but when I pushed my MO and my surgeon, they both said if I was their sister, they would recommend it. I did not have any node involvement, which gave me pause for about a moment--- but in the end, it was lumpectomy, chemo, rads, AI&lupron..... and I am going off the AI in 3 months!!!!
What I used to decide was this: what would be the decision that would give me the greatest chance of sleeping peacefully every night? chemo was no walk in the park-but it went fairly quickly and is now such a distant memory. There are risks and rewards with every decision in cancer treatment. What I do know is that I made the best decision for me and have not had a single sleepless night since. Hopefully I will live to a ripe old age and die of something else.
good luck with this decision--it is a hard one from the gray area.....
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One thing I forgot to mention...someone in an above post mentioned chemo wouldn't benefit them in their case. What my MO said was because of the ER+/PR+/HER2- one of the drugs used commonly in chemo is not beneficial (I can't remember the name of it), not that all chemo is not beneficial. They have to tailor the treatment to your specific case. Mine also said if I were their sister, daughter, etc. chemo is a definite must. No Oncotype score needed. I had a 2nd opinion with a female oncologist to get her take on things, she agreed with the plan the first one had set forth. Like Momand2kids, I will feel I have done all I can to protect my whole body. These decisions are so hard, the hardest ones I've ever had to make in my life.
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I wonder why I didn't get the Oncotype test. Maybe I had to ask for it. Well, whatever. That ship has sailed.
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Alli,
Yep, we all have to follow our doc's advise as well as our hearts.
It's the same with mastectomies -- my BS told me that I'd have only a 3% risk of cancer spreading to my healthy breast. He said it's a myth that lobular cancer has an increased risk of going to the other breast. In fact, I have a much greater chance of it spreading somewhere else in my body than to my breast. But I just felt better having it removed, even if it was just a 1 or 3% chance. That was a "sleep at night" factor for me. My BS just wanted me to make an informed decision and he supported it. As for the rest, I've relied on my medical team to make the best treatment choice for me. I can't speak for anyone else's situation. And I don't judge anyone for what they've chosen.
The agonizing choices we've all had to make in our journeys are very personal. You just do the best you can, hope for the best, and then don't look back.
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It's crazy to think about. And see in my stats, I chose to have one breast removed....sometimes wondering if I made the right decision there. Followed my gut on that, mostly. Docs felt it was not necessary to do bilat, yada, yada, agh!! I'll second your last paragraph, Hope for the best and don't look back
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Agree. And I decided to have a lumpectomy. And many people would have just opted for a double Mast. and saved themselves from some worry over the years.
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I am kind of sure if you have Vascular Invasion,no matter node positive or negative,you most likely get chemo.like what I did.
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Ruth - please share info on daily aspirin and cancer treatment. You made me curious! So that you know, I finish this post and off to the gym I go... You girl get credit for this! :>
GGG - you can still ask your hospital to send for oncotype testing. If you have only one tumor to send, your insurance will cover it. If it comes back low, you will have even more reassurances on your prior decisions.
Joe - great update on your cousin. Continued good luck to him! Stage IV does not sound as scary when I read wonderful stories like his.
Nisa
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Good suggestion Nisa - it's never too late to do an Onco because they keep those slides FOREVER. It's such valuable information - just another piece of the puzzle.
I did have one positive node with micromets (just 3 cells really), but no vascular invasion. They didn't do a ki-67 until after the surgery. I scored 0.5% - one of the lowest scores they had ever seen. From the beginning, we knew it was slow growing. One nurse referred to it as a "well-behaved" tumor, lol!
Meg, I wish I could have gotten by with just a lumpectomy. We tried, but the dang thing was too hard to get out. Oh well... I'm just glad it's gone!!
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Thanks Nisa but I already had the Oncotype test done last year and my score was 11 which is a low score so I was asking Flagirl why her Oncologist thought anything over 10 would get her chemo...that just doesn't make sense to me. Anyway I also had a micromet in my SN thus the Oncotype test. I think we all do just do the best we can with what we know. It is our bodies and our lives. I am blessed I didn't have to make "the call" for treatment; it was made for me based on the Oncotype test.
Globalgirly - I am sure you can inquire about the test with your Oncologist. I didn't even know there was such a test; my Oncologist recommended I have it. She said it was time to stop overtreating women and subjecting them to more discomfort and expense...Amen to that. Diane
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Nisa, there are a lot of studies that suggest that taking a daily low dose aspirin can reduce the risk of BC recurrence (and other cancers, heart attack & stroke too). You can google the various studies, I've copied a short section of an article in the March 21, 2012 US News and World Report that explains the major points. Of course, you should check with your doctor first before starting this regimin.
"It (daily low dose aspirin) may lower a woman's risk of breast cancer recurrence, or possibly even its development. A 2010 report based on data from the Nurses' Health Study suggested that women who had breast cancer and took a low-dose aspirin two to five times weekly were 71 percent less likely to have a deadly recurrence than those who took little or no aspirin. And a research review published in 2008 in the Journal of the National Cancer Institute found a 13 percent relative risk reduction in women who used aspirin regularly, compared with those who did not. The findings found an overall reduced risk of 12 percent for regular use of nonsteroidal anti-inflammatory drugs (NSAIDs) in general. Previous research on breast cancer risk and NSAID use had shown conflicting results"
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