Stage 2 Sisters Club
Comments
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Thank him from all of us for his service to our country, and give him a hug from us for being an awesome family guy as well!
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I second Ruth's statement, SK, and will add that I know it takes a very special woman to build amend maintain a strong marriage in the military setting.
Molly, welcome to the thread. I'm in the Pacific NW so we're almost neighbors.0 -
ruthbru - I will! I have to say that every single time someone saw him in uniform and thanked him for his service he was genuinely touched - and he will be when I pass along your thanks too.
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hi!
I would appreciate all your thoughts today as i speak with onc to discuss treatment. My onco score came back at 9, so discussion about chemo or not will be forthcoming this afternoon. Thanks ladies!
Kim
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kimmer - some of the results of the TAILORx study have been released as of Monday and the consensus is that with an Oncotype Dx score of less than 10 they feel secure in not recommending chemo. Here is a link to that discussion and some other info about it:
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Hi Kimmer:
It looks like from your profile that you had one positive node? I would just note that the new study was done in a group of node-negative patients, so the results may not be relevant for truly node-positive patients.
Specifically, the recent study was performed in a subset of ER and/or PR positive, HER2-negative, node-negative patients with invasive disease:
"The study included women 18 to 75 years of age with axillary node–negative invasive breast cancer that was estrogen-receptor–positive or progesterone-receptor–positive (or both) and that did not overexpress HER2. Patients had to meet National Comprehensive Cancer Network guidelines for the recommendation of adjuvant chemotherapy, including a primary tumor size of 1.1 to 5.0 cm in the greatest dimension for a tumor of any grade or a size of 0.6 to 1.0 cm in the greatest dimension for a tumor of intermediate or high histologic grade or nuclear grade (or both)."
Here is the original report published on Monday:
http://www.nejm.org/doi/full/10.1056/NEJMoa1510764...
Here is a related commentary:
http://www.nejm.org/doi/full/10.1056/NEJMe1512092
Here is a summary in layman's terms:
http://www.eurekalert.org/pub_releases/2015-09/ecr...
The new study found that the Oncotype DX assay was quite robust among node-negative patients who met the study criteria and had scores from 0 to 10, all of whom received endocrine therapy alone.
Other studies have included node-positive patients.
BarredOwl
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thanks for responding. I found out results of my ct scan today and they want to re-scan my liver. My onc thinks it's nothing, but i am terrified. So moving forward with the rxponder study is on hold, yes i had one node positive. Any thoughts you have i would appreciate as i enter into another week of anxiety. Sigh.
Kim
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Kim, so sorry about needing another scan of your liver. If it's any comfort, scans are so accurate today that they pick up all sorts of stuff that is meaningless. I am coming up later this week on my 3rd (and, I hope, final) lung scan. I'm kind of blase about it now but there's that little voice that always tells me not to get too complacent. I also had something on my liver that was insignificant - but none of it feels that way when you first hear about it, does it? Hang in there - the waiting is miserable but the results should be reassuring.
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thank you, thank you, thank you hopeful82014, for responding. I really appreciate your words. My onc also said these scans drive doctors nuts cuz they pull up so much stuff. I actually also have "dizzles" (onc terminology) that they found on my lungs and bones, but she isnt the least bit concerned. Oh just so tired, so tired. I was hoping for no chemo also due to my low onco score, but because of my age and my premenopausal status, she wants chemo, so i dont know what to do. If i stay in the study i could be randomized to the hormonal treatment only, so we will wait and see.
Kim
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Chemo is not fun, but for most people it is not as bad as one fears. I felt kind of creepy, like I had a slight case of the flu (but never threw up or anything). I worked throughout, did everything I had to do, and most of the things I wanted to do too. If it warranted, then it could save your life.....chemo is not the enemy, cancer is. I, like everyone else, did not want to do it; but medically it made sense, and now I am very glad I gave myself that extra insurance.
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thanks ruth
My confusion is when my onc first told me about the study and looking at my case, she really made it sound like chemo is the bad guy, spouting off chances of leukemia and heart issues - made me love the low onco score but then today says i cant just back out of the study and go outside of the standard of care regimen. So a little confused...
Ki
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Well, she should have not said anything.....very unprofessional of her when she didn't have the whole picture. My surgeon pretty much said that being node negative, I wouldn't need chemo.....so I was SHOCKED when that was the oncologists recommendation, and I have heard the same thing happening to other people too. I wish they would be neutral in what they say until they have all the facts so we patients wouldn't feel so blindsided.
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Kimmer - while barredowl points out that tailorx was done using node negative patients, here is some additional info regarding accuracy of use of Oncotype Dx for recurrence score in node positives.
http://breast-cancer.oncotypedx.com/en-US/Managed-...
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Thanks Special K! I kind of ran out of steam there at the end.
Kimmer:
I don't know exactly what various guidelines provide for a patient like you. Anyway, I would not want to influence your ultimate decision on this question one way or the other.
You said "but then today says i cant just back out of the study and go outside of the standard of care regimen". I agree that is confusing.
From my limited knowledge about clinical trials, you can decline to participate in a clinical trial if you want. It is solely your decision. It also appears that you can also choose to withdraw after joining, and I would not expect a difference between the US and Canada in this regard.
http://www.cancer.net/navigating-cancer-care/how-c...
I wonder if she is saying that she would support the possibility of your not receiving the chemotherapy regimen in the context of a randomized clinical trial, but that outside of that context she is actually not comfortable making that recommendation to you personally. This seeming inconsistency may reflect a delicate balance between her status as a clinician and a clinical trial investigator.
This is not the most recent article (2004) and is from the American Heart Assn, but it introduces a concept called "equipoise":
http://circ.ahajournals.org/content/109/21/2672.fu...
"Once a physician considers enrolling a patient in a trial, a new relationship between that patient and physician develops with the potential for conflict with the traditional doctor-patient relationship. It is most important for the investigator to remember that as the treating physician, one's principal responsibilities remain to avoid harm to one's patients and to help them. Therefore, a condition called "equipoise" is required before one may deem it morally appropriate to enroll patients in a clinical trial. This means that when considering the various treatment arms of a trial (including any placebo arms), one should be in a state of uncertainty about whether one arm or the other is more effective. If a proposed study is asking a question that, to the best of one's knowledge, has not yet been answered, it would be ethically appropriate to propose the trial to one's patients and to enroll those who consent. Although one may have a personal belief that one arm or another will turn out to be more effective, most ethicists now argue that the state of equipoise necessary to justify enrolling patients in a clinical trial need only reflect a state of uncertainty in the medical and scientific community, not one's own individual beliefs."
The concept is also used in the oncology context, as discussed in a more recent paper from Annals of Oncology:
http://annonc.oxfordjournals.org/content/24/10/247...
The problem is that you are trying to process and rely on her medical advice, and it appears to be context-dependent. I think you may have to ask her if that is what she meant: that outside of the context of a trial, she is not comfortable recommending a departure from the standard of care regimen to you personally. If so, it would be quite important for you to know that.
In general, when a patient is considering a departure from consensus treatment guidelines, it might be reasonable to seek a second opinion.
Is it possible for you to obtain, and would you be interested in obtaining, a second opinion from another institution (so the advice is independent), and from a clinician who is not involved in the study? The second opinion process may help you better understand the relevant studies, the likely benefits and risks of the proposed chemotherapy regimen in your specific situation, and how to balance these as part of your decision-making process.
I hope that is not more confusing.
I am with Hopeful, hoping your scan thing is nothing.
BarredOwl
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Kimmer - hope all goes well. I too have crazy growths in various organs. I hope your new scans come back clear! Yes, you can walk from a trial any time. Laws provide you with rights and protection for you to do so. I hope that was a miscommunication from your Onco. I agree with Ruth that chemo is not the enemy, cancer is.
About TAILORx- Nice to hear about strong findings for low oncotype score (and great press for Genomics). Goodbye chemo for lots of women. The endpoint of this trial was to provide information on the nearly 70 percent of enrollees who had a mid-range score of 11 to 25. I am eager to see those results. I was blessed to have one of my five second-opinions with Dr Joseph Sparano, the friendly and down to earth brilliant author of this trial. It is my hope the current cutoff for chemo recommendation is moved up, but wonder what if moved down?
Hugs, Nisa0 -
Now know another fabulous woman who went from an innocent and almost forgotten BC stage 1 just over 2 years to suddenly multiple liver mets. In fact, so many mets that surgery not an option and prognosis quite grim. Life-long vegetarian and marathon runner. It makes me angry. It is October again, so much ridiculous pink all over and so little money going into stage IV work compared to education and awareness. Thank you for letting me vent. 💚 Hugs to all, Nisa0
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It's awful, isn't it. One of the 7th grade math teachers at my school (a lovely woman in her mid-40s with 3 kids still at home) has been diagnosed with melanoma.....which has very few treatment options & all of them bad, and other 7th grade math teacher's husband has just been referred to Hospice.....esophageal cancer. The whole staff is shell shocked. Tough, tough stuff.
Hugs from me too.
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So had my second CT scan today, and still inconclusive, so they want to go to ultrasound next, then possibly MRI. I am so scared about this. We are starting chemo tomorrow regardless, to get it going. My onc still thinks my cancer wouldn't spread (statistics are in my favour) to the liver, and with my low grade, should be benign, but they need to keep proving it's benign I guess with all these tests. Reassurances anyone?
Kim
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Glad you are getting started on the chemo, Kim. I am sure that they want to cover all the bases (and what your doctor said is very encouraging); and you, for sure, want an accurate diagnosis....but still it is a scary, scary time. It is trite to tell you not to cross any bridges until you come to them, but I hope you have some things that can distract you a little until it is all sorted out. Sending good thoughts your way!
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Thanks Ruth!
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Ruth - How awful what's happening in your community. Shell shocked is a good word. I am so sorry. Until I went to college, I only knew of 3 people who died of cancer - all in my family. Nowadays I know have many people in my work and personal lives that are dealing with cancer, and this does not include BC friends. What's going on?!
Kim - Ruth's words resonate as absolute truth for me. Tomorrow will be a big day and I hope it goes as uneventful as it was my first chemo. Distracting yourself from cancer stuff can be so helpful. If you would like names of comedies on Netflix, just ask. In the meantime, I recommend 2005 Prime with Meryl Streep, one of the highlights from my chemo days 2 summers ago. Hugs to you 💚0 -
Thanks Nisa, super thoughtful!
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Kim, if you've not watched however many seasons of Arrested Development that might suit. It's quirky but I get a big kick out of it. There's a fun, older series from the Beeb called French Fields (and it's prequel, Fresh Fields) that got me through radiation summer. Hugs and best wishes for this next step.0
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Hopeful - Fun suggestion, thank you. I watched one episode of Arrested Development and liked it. I plan to continue. My favorite Fall season show is Homeland. I binge-watched the first season and got hooked
Kim - how are you feeling? Are you doing TC? Many of us are familiar with that chemo regimen so don't hesitate to ask questions if side effects come up over the weekend. Imalsomsuggrst you visit the thread on Starting Chemo in October where you will get tons of current info and support. Big hug 💚0 -
I hope that chemo went as well as it could yesterday, Kim.
I am also going through "we think this is benign, bur we just want to be sure, so here go through more tests" too. Mine is about nodules on my thyroid though. Most likely meaning some thyroid surgery when I have my mastectomy after chemo is done.
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Thanks for the netflix suggestions, i just may try arrested development. And thanks for all your thoughts
My treatment is AC, then Taxol.
I am ok today, my head feels thick probably from all the anti nausea drugs but i slept pretty well considering what i've read about the steroids keeping you up.
Kim
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Skittlegirl - I hope those nodules are only a nuisance. I am sorry you have to be dealing with BC at your age while raising little kids. Looks like you started chemo recently and have a game plan in place; that was a turning point for me. I wanted to mention Anne Silberman's blog and her experience with Perjeta. Anne is one of several people reporting amazing outcomes. I wish you the same 💚 hugs, Nisa0
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Kim - Great hearing things went well for you yesterday! Chemo is never easy but often doable. If you have the energy, keep moving as in walking or anything involving physical exercise. It can be very helpful, together with drinking tons of water. I used to tape 10 pieces of paper (about 2" x 2") to the kitchen pantry door and would pull one every time I open a bottle of water. Each paper had a number and a few inspiring words. And the following morning, the countdown would start again, otherwise I would forget how much water I was drinking. I wish you a low SE weekend! 💚 Nisa0
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thanks nisa
I plan to walk today and everyday, just waiting to see how i feel - dont want to overdo it the morning after.
Great idea about the tape for water drinking i just may try it - how much did u drink per day?
Kim
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Nisa, glad you enjoyed AD. I found that it really grew on me.
Kim, I'm thinking of you this weekend.0
