Node Positive and No Chemo.....
I just happened upon this thread:
".....Stage II, Grade 1, 3 positive nodes and NO chemo. Maybe soon to come is a change in the "standard of care" for us women with stats like mine. Would love to hear some input and opinions on this. Yes, 11 oncs all agree with my treatment, radiation and AI's so I should be at ease. I guess I am but want to hear from others like me!"
http://community.breastcancer.org/forum/108/topic/765323?page=4#post_2295096
What's going on here? Does anybody know?
AND PLEASE, let's not make this a "Yazmin, are you doing this because of your anti-chemo bias" issue......
I AM JUST ASKING A QUESTION HERE: Is there a new change in the "standard of care" happening RIGHT NOW?
I mean: in 2006, I was put through 5 out of 6 infusions of Taxo-Terrible, before being told that the "standard of care" was moving away (then, in 2006) from chemo for women with my tumor-type: ER+, PR+, HER-, because it had become thoroughly obvious that chemo does nothing for that particular pathology.....
I am interested in knowing if anybody knows more about this.....
Comments
-
As a breast cancer patient almost 10 years out who had chemo, I believe there is reason to discuss this further.
There are a couple of major reasons why I think so.
1. The emphasis on the fear factor of "if you don't do chemo, you have to live in fear of recurrence". As a medical provider, I can honestly say that I believe this tends to protect medical providers more than it protects patients, given the added morbidity for all causes that is increased with the use of chemotherapy. There is no garantee for any individual breast cancer patient that doing chemotherapy means they won't still have recurrence,.
2. The majority of breast cancer patients are 55 or older and at much, much lower risk of recurrence, with a much greater likelihood of damage to genetic sequencing as a result of chemo and radiation.
3. My impression is that we are failing hugely to give enough weight to age when recommending treatment. Breast cancer has been prevalent in my family for generations, but it always occurred in older women and out of many, only one ever recurred -- and that one being due to having been diagnosed in the 1950's so late in the game. The only one who had chemo and rads out of all of them was me. I'm still doing fine, but as an ER+, PR+ I think hormonal status and not chemo was what saved my bacon, because I am HER2+++ and never had any taxane, any trastuzumab, or any aromatase inhibitor. I did have less than 2 years of tamoxifen.
4. In the health care field where I work, ignorance about the significance of being ER+, PR+ and especially, triple positive is extremely prevalent. Most of the profession still considers breast cancer to have the same risk for all patients and treats them that way. We tend to think "if the nurse believes doing chemo is a good thing for every breast cancer patient, then they are more knowledgeable." But the reality is that most PCPSs of all kinds are remarkably uninformed about the variations of breast cancer, and they simply do what oncologists recommend. That doesn't mean they have evaluated the question about chemotherapy at all. They are doing what the medical system recommends that THEY do. Most of them never even take on the conscience of making certain that patients actually receive genuine "informed consent" about the repercussions of chemotherapy, even though they are the ones actually giving it. They are hiding behind the openly acknowledged and obvious fact that these treatments are given with no promise of healing, and no definite promise of not damaging the health of the individual patient receiving it.
AlaskaAngel
-
I'm intrigued as well. I do know that there were some trials going on with node-positive women who were given only hormonals so maybe they have some results? I would think we would have heard. And three nodes . . . I do find that surprising.
-
My understanding is that if all the positive nodes have micromets <= 2mm then chemo might not have a big benefit, regardless of how many nodes are involved. However, if at least one node is >= 2mm then chemo should be considered/recommended. Also, this is just one factor, HER status, size of tumor, location, etc.... all play a part of the decision for treatment with chemo.
I think the "standards" are changing and they are becoming more customized to each individual's pathology, which is a good thing. There still needs to be 'standards' though to help guide folks on what studies have found.
-
I am ER+ and was told no chemo though I had micromets. They said it wouldn't do anything beneficial for me, so there was no point.
-
Yazmin,
I love your term "Taxo-Terrible" a perfect discription! NJ
-
Alaska Angel...loved your post! So much is done out of the fear factor and the cookie cutter approach. I just had my sentinal nodes unnecessary removed due to "standard" treatment. I hope more women consider what you said before following orders that could worsen their problems.
-
My first BC was stage 11, node positive. ER/PR+, that was 10 years ago, I did not have chemo. Did have a MX. I was told and believe that my local recurrence had nothing to do with having or not having chemo.
-
Thanks, evebarry. I was very unaware how limited the knowledge level is by PCPs. Throughout my course of treatment, I asked every nurse and every doctor who handled my treatment if they personally had ever had cancer or chemo and I have yet to receive a yes answer to that question.
In addition, most of the nurses administering the chemo were age 35 or under, whereas most breast cancer patients are 40 or older. Nice, intelligent, technically competent they are -- but they are generally as clueless about the main effects as they are about the side effects.
At my third dose I was talking with a really nice, hard-working 30-something ICU/chemo nurse with years of experience, and brought up the subject of toxicity. I told her that just like her, I'd spent a lifetime taking great care of my body, getting exercise, eating right, organic foods, clean water, no history of smoking anything, etc. and it was really, really difficult for me to dump the toxic chemicals in. She looked at me in surprise and said, "You know, I've never really thought about it that way." As long as it isn't THEM, they DON'T have to think about it. And they DON'T. They just administer it they way they have been taught to give it. They are sympathetic. But at the end of the day, it isn't something they receive personally.
I bought some new, nationally award-winning DVDs prepared specifically for breast cancer patients and donated them along with a portable DVD player to my PCP's office for use with breast cancer patients. I know personally that nursing time is limited but I thought they could at least provide them for the patients to see on their own. Nope. They could spend time with the patients to "cheer" them on, but they didn't even open the DVD packages.
I'm sorry to be so sour, but I personally spoke two separate times with my PCP and then twice more with my oncologist about the sexual impacts and sexual dysfunction issues I deal with. That is 4 separate clinic visits. When I requested copies of those clinic visits, there was good documentation of the anything and everything else about my state of being, but absolutely no mention of anything to do with that complaint. If it ain't written down, it doesn't exist, and they don't have to address it. AND THEY WON'T. They have no hesitation about being up front about any of these things with men when it comes to prostate cancer, but these highly qualified and licensed providers just can't bring themselves to deal with women honestly. So much for "informed consent".
Thanks for listening,
AlaskaAngel
-
Hi
Just wondered why chemo was not standard care (generally) for E+ Pr+ her2- as a lot of ladies on the boards have that particular profile, so I thought it was fairly typical ?
Xx -
Hi,
Now the doctors seem to be streamlining treatment on a patient to patient basis. I was diagnosed back in 2007 and had micromet in sentinal node so fully expected to have chemo. Because I had not started menopause at 52, it was offered that I have my ovaries out instead of chemotherapy, had radiation and now on Femara.
At the time I was definitely going solo as up until the last few months, I did not know of a single other person who had missed the chemo trip, with stats like mine. There now seems to be quite a lot of information out there that chemo is more beneficial for er and pr negative, than for positive.
ched
-
Alaska, I am sorry you had that experience with the chemo nurses but I do have to sing the praises of most chemo nurses. The ones I dealt with were lovely and helpful above and beyond the call of duty. They looked out for the emotional well being of the patients, as well as the physical, and were extremely kind. Also, super, super busy. I can see why they wouldn't necessarily have the time to view the dvds. Finally, we should be mindful of the risks they take on. We are exposed to the toxicity of the chemo drugs for a short period of time, and the cost-benefit analysis, because of our cancer, makes it worthwhile. But chemo nurses are exposed to these drugs day after day and year after year. They can inhale small particulars and handle these drugs and i believe I read somewhere that chemo nurses have elevated cancer rates, simply because of the work they do. So I defend them.
-
Member:
I DO trust your research and judgement. Please let us all know if you find anything further. Thank you for your help.
-
I should say I'm not actively researching this as my chemo days are, hopefully, behind me forever. But I am intrigued so I have been reading about it when something crosses my radar screen. When I went through treatment I knew one thing that would happen (if I survived) was that treatment options would change over time and my treatment would become outdated. And it is is. I had the full axillary dissection, for example, and perhaps if I was diagnosed today I wouldn't get as much chemo. I have no problem with that, I got the gold standard at the time. but I am very happy that they are refining treatment for those that come after me.
Would be even happier with a cure.
-
I think there is a new "standard of care" developing now, too, and I'm all for it.
My mom had Stage IIIB at age 39 in 1968. Radical surgery, cobalt radiation, and no chemo. Lung mets 10 years later were obliterated by a new drug called Tamoxifen. She died in 1988 of an unrelated cancer. When I was diagnosed at age 44, the rads onc guy tried to push me to chemo "because of my age"--not a prognostic indicator, given my favorable tumor type/grade. It's really difficult to make decisions that may impact your entire life when you are caught up in the emotion of a cancer diagnosis.
So I didn't have chemo, but as a nurse I can certainly defend and respect chemo nurses. Yes, they are usually younger, very bright, and compassionate. But it's really not in their scope of practice to be telling you about toxicity and risk/benefits of the drugs. They presume that you've had those conversations with your oncologist by the time they have the order for your "cocktail" and you are sitting in the chair in front of them.
But this should not be about what the chemo nurse's responsibility is to the patient. It's about changing dynamics of breast cancer treatment. We've been saying for years it's not a "one size fits all" proposition. It's amazingly complex and multi-faceted. There are things about it we as patients can control, and thing we can't. Those variables are currently being weighed and tested and discussed.
But we're still in the dark ages, so to speak, when it comes to knowing causes (not correlations!) and until we can pinpoint all the causes, we're not going to quite get to the cures. Till then, we must continue to be our own advocates and support the groups who are truly searching for causes, not just cures...
-
Anne, I agree even in the year I've been learning about BC I am seeing many changes. Last July I was given the choice by the Onc. I had chosen I could either do chemo or not, but she recommended it . Because of SE's I had to stop chemo. At that time my BS suggested a new Onc. who was more willing to work with him. That Onc. said he would never have suggested chemo with my stats dispite my Onchotype score of 24 my BS all along had said no for chemo for me.
As I am reading more stats it seems more Dr's aren't pushing chemo quite so fast now. There are just so many things that must be looked at with a diagnosis of BS. It's just not a 1 size fits all treatment.
-
Member, etc. I don't disagree with you about nurses and their role or their hard work or their caring. In a way I was hesitant to post at such length because it might distract from the point of this thread, which is:
"Is there a new change in the "standard of care" happening RIGHT NOW?"
I don't know if there IS a change happening right now, but I do believe there needs to be a change, and the reason it takes so long for change to happen is because, scientifically speaking, PCPs (local doctors and nurses) are expected (and expect, themselves) to ignore what they see that conflicts with the desired therapy, and are encouraged not to question the oncologists, who only see test results and only see the patient when the patient isn't being seen by the PCP. Modern chemotherapy has even isolated the PCP and nurse from the patient in that steroids and blood boosters administered with the treatments result in the patients being seen for treatments when they are not experiencing most of the worst parts of treatment, and are at their high point, not their nadir. How can their direct care providers be expected to grasp the scientific picture if they are isolated from the process?
Anne, I see your point. But what I am getting at here is that me going to my PCP and telling him about the sexual issues when he believes the onc is the one to handle them as a fully trained experienced doctor and the "most knowledgeable" person in charge of therapy.... and then me going to my onc and once again exposing my health issues directly related to chemotherapy and having the onc, as the person in charge, decide they aren't worth writing down, is what is keeping the observational progress from being made, even in terms of such things as hormonal status. It is safer for medical personnel to stick to the toxic drugs "just in case". Neither the chemo nurse, nor my PCP, nor my oncologist made any effort at all to recognize or address that issue. Are they entitled to throw it out the window (including not providing any informed consent prior to chemo about it) as long as they properly administer the chemo and tell me how well I am doing? That is about as clear of an example of an unscientific dysfunctional lack of observation and honesty with the patient as it gets. Are they really too busy for that? If they are, then what else are they "too busy" for seeing and reporting in justifying excessive toxic treatment?
Again, hormonally speaking here, the vast majority of breast cancer patients are likely to benefit the least from chemotherapy because the vast majority are older patients. That is why I think that when they are receiving treatment promarily from young nurses who have no reason to comprehend or observe or record their situation in relation to chemotherapy, we will continue to miss the boat -- especially when nurses are discouraged from taking responsibility for making any observations that are not in line with what the oncologists recommend.
AlaskaAngel
-
I do think there is a change right now.
I was making my decision during the San Antonio conference in 2009. Oncotype put out a press release saying there was no statistical benefit proven for chemo in node positive women with low and intermediate oncotype scores.
(That really means that the benefit did not make the confidence interval...there was some benefit for intermediates.)
To sum it up....while the survival rates are somewhat lower for more than 3 positive nodes, the chemo benefit pattern holds up.
Which also means women with lots of postive nodes but a low oncotype are in a tricky spot.
(One study theorizes that low oncotype women with high KI67 may be the ones who progress to mets.)
Now the data is based on a small study, just 347 women, so I can understand onc's not changing right away.
But there are more of us node positives who have been oncotype tested not getting chemo.
BTW in this small study, the prognosis of node negative and 1-3 nodes was pretty close, within the margin of error.
-
AlaskaAngel: no, you are not sour.
You have every right to go on. I can appreciate that "they" are constantly refining their treatment methods. However, I feel oncologists are using the "cookie-cutter method" WAY too much. It should not have taken this long to find out that treatment should be tailored to each individual patient; and for the past 20 years or so, they have been bombarding all those strong treatments without questioning the "standard of care". And we, the patients, are the ones who have been paying the price with our health: perfectly useless (and highly toxic) chemo was applied to millions of women (to no avail, since it is now becoming clear that chemotherapy can do nothing for some of those pathologies); Same thing with SERMs: no test available to find out who might really benefit from using SERMs; or AIs.......
-
alaskaAngel,
So, when I ask my onc if I should have had neoajuvent chemo, before surgery, because I was givin the choice to do either. Although was told what ever I chose it would not change my survival rates.
I chose to have surgery first, they Knew there was one node invovled. they also knew, I had a large tumor, what they did not know, was that I had 10 pos. nodes, and a 4.5 cm
tumor 98% ER pos. I followed that surgery with, a/cx4 taxolx12 ooph,38rads, now on tamox,
I was 41 at dx, 11 months prior clean mammo. HERES MY QUESTION FOR EVERYONE
if we are now learning that chemo may not be benifical to er pos women, did I put myself through
ALL THAT HELL FOR NOTHING, or is there a chance that with my prog.the cancer being so agressive, that maybe, the chemo, did stop some stray cells from attaching themselfs to an organ, putting me into a stage 4 statis? I really would love anyone to respond to me, because
chemo, was hell and I have the aches and pains to prove it! Is this study just for women with 1 or 2 nodes, or lots of nodes? I'm really confused. Whats done is done, and because i chose to do
chemo after surgery I don't have the proof that the chemo irraticated anything. However, I personally feel like had I not done surgury first, how would they have ever known how agressive my cancer was! Oh well at the end of the day I feel healed! I believe in the power of prayer!
Stronger then any chemo out there!
Blessings and to all sister's
I pray all your journeys go well, and we all tfind the peace we strive for!!!!!
Stephanie
-
Stephanie, I think you did the right thing, for what it's worth. That's a lot of nodes....
-
Stephanie, I trurly believe you did the right thing. I think in your situation any Dr. would recommend the treatment you got.
-
Who are the "on the edge" oncologists? What Universities and Medical Centers can I find them. I getting prepared for my RMX. As of this moment I have ER+ PR- HER2- microinvasion of IDC and another quadrant has 1.2 cm of grade 3 DCIS. MX on Tues. then OncoDx for my pathology. I definitely do not want chemo or radiation. Think I have a good chance? Great thead, great information!
-
faithful heart.....the crazy thing is that even for women with lots of nodes....if they are oncotyped the benefit holds up pretty well.
Do you know your KI67...in general...very general..the higher ki67 gets better benefit from chemo....also the lower the ER, the more the benefit....how high was your percentage.
The good news is that few women with so many nodes are low oncotype...it happens...but rarely...so the chances your chemo did you good are pretty good.
If they ever start oncotyping stage 3 women, I don't know what they will do if they are low oncotype. Maybe Parp?
-
rianne...I am not sure. I might read studies that click with you and see who wrote them. Sometimes younger docs are also more cutting edge.
-
There is no oncologist alive who wouldn't recommend chemo for someone with your number of nodes. A very important thing to look at is the behavior of your particular cancer, and your cancer wanted to travel.
-
Stephanie: With this large number of nodes, and no matter what "adjustments" we might have been hearing about [concerning chemo and ER+ tumors], I believe you have made the right decision with the information that's available to us at this point in time. I really do.
-
Stephanie - I honestly believe you completely made the correct decision with that many nodes involved. Do not even second guess it.
I had two positive nodes, the cancer found in them was 9mm in one and 7mm in the other, and every oncologist that I spoke with (surgical, medical and radiation) - there were 7 total because I was getting different opinions, all said that both chemo and tamoxifen were very important aspects of a good treatment plan for me since I am 100% ER/PR with those two positive lymph nodes. The only grey area for me was radiation, which I will do for my lymph nodes only.
I think the reason for some node positive breast cancer patients not having chemo from reading articles and studies is because of the small amount of cancer found in them, i.e., less than 2mm in each positive lymph node, when only 1-3 lymph nodes are positive.
Honestly you made the right decision.
-
Thank You ladie's,
I know my onc wanted to be very agressive! I agree too. One of my nodes was 2cm!
non of my nodes had come out of the capsule. All the nodes were contained. I guess I am just thanking God the nodes did there job. I pray to God!!!!!
Thank you all for your reasurring comments, Sister's if there's a way to avoid chemo for you and its safe, I say you go for it! The havoc chemo reeks on your body, after all is said and done is not pretty.
Esp. lack of short term memory, However, I could just be using that as an excuse!!!!!
Early detection!!!!!!! I pray for all our sister's touched by this, Your all amazing women!
We all are fighting hard! We all need to do what we pray works for us!!! I can't stand cancer
It sucks!!!!!!!!!!!!!!!!!!!!!! Sorry, It's so true though
Hugs to all
Stephanie
-
Cookie,
I am 2 node positive in Jan 2014 Oncotype score was a 9. My tumor hormone respective and I was 58 at the time. My onocologist gave me the opinion of chemo or no chemo. He said that there was no proven info that chemo would up my reacurrance score. I choose no chemo. I am taking Letrozole and have side effects, but I am sure nothing like the chemo would have given me.
I would like to hear back from you as to how you are doing. dkryan.55@comcast.net
Thanks
-
Was just wondering since the main subject is chemo nay or yeah.. Are you folks aware that in the USA chemo drugs are the only drugs that oncologists are allowed to purchase direct from the pharmaceutical companies. Then by law they are allowed to mark up the price and the profit goes into their pockets. I did not know this something to consider .
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team