Node positive, Oncotype DX 10: Chemo or no chemo?
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I am posting here for my mother. She is post menopause, 62 years old. She was diagnosed with ILC on April 28th. She underwent bilateral mastectomy on May 13. They tested 14 lymph nodes, finding two positive. Stage II. I am not entirely sure the grade, but her tumor was very advanced, at 5cm.
She recently got the results back from OncotypeDx with a recurrence score of only 10. It showed a 1% LESS recurrence risk W/O chemo. She was thrilled! "Now I get to keep my hair!"
She immediately decided not to have chemo, only radiation, and the 5-year hormone replacement therapy. Today was her first appointment with the radiologist. After looking over all the information, she expressed some concerns about the choice not to have chemo. She was completely supportive of my mom's decision either way, but merely wanted my mom to consider the fact that she is node-positive with a sizable tumor.
My mom is 62 years YOUNG. She is in otherwise pristine health... loving and living life to the fullest. This past year, she has been RVing with her boyfriend, having a great adventure. My concern is that the recurrence score only looks at the next 10 years... but I know she will live much longer than 72! Can anyone else share their treatment path following OncotypeDX, with a similar stage and node-POSITIVE? If you were in her shoes, what path would you take? It's so scary! Everything we've read about women choosing not to have chemo have been with node-negative, and we are obviously concerned.
On a side note: I don't have her paperwork in front of me. After her fun bead class today, she will give me the info about the grade, and hormone results. Also, I apologize if I sound like a newwwwbie. I am!
Becca
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Becca - Has your mom met with a medical oncologist (MO) or only the breast surgeon (BS) and radiation oncologist (RO)? Your question is a very good one and I would recommend that your mom discuss it with a MO. I had Stage II pleomorphic ILC with a small primary < 1 cm but 2 positive nodes with extracapsular extension and an oncotype of 12. I was premenapausal and 48 yo when diagnosed. Three MO all recommended that I have chemo. They all felt that my age, pathology and positive nodes trumped the oncotype score. I don't regret doing chemo. I'm a strong believer in 2nd opinions!
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Hi Becca, Rather than just take the recommendation of the radiologist, perhaps a consult with an oncologist (or two) would help. Did the surgeon have any input?
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Becca, other things to factor in are how strongly hormone positive the tumor is and how high the KI-67 score is. The KI-67 tells you how aggressive the cancer is in terms of how fast the cells are multiplying. Chemo is most effective against cells that are multiplying very rapidly. Recent research out of MD Anderson showed that with ILC if it is highly hormone sensitive you are likely to get better results with hormone therapy than with chemo. I had a very large tumor and did hormone therapy for 5 months prior to surgery and it shrunk pretty dramatically. I chose to just do the sentinel node biopsy which was positive. I knew that I was going to have to do radiation after surgery no matter what so I chose not to increase my chances of getting lymphedema by having more nodes out. ILC is weird in that it is not unusual to have a large tumor that is fairly nonaggressive. It is just big because it has been around for a long time evading the mammogram machine. I had a KI-67 of 2 and 3 plus hormone positive in all the cells studied plus an oncotype of 6 and my MO said that there would be very little added benefit from chemo. Some oncologists recommend chemo for almost everything so getting a couple of opinions is not a bad idea. I may be on hormone therapy for the rest of my life but I can live with that.
Cancer treatment is all about playing the odds balancing quantity of life with quality of life. If your Mom is one of those people who will be miserable and always second guess herself if she hasn't done everything possible then chemo may be a good choice but if she is more about figuring out how to get the best quality without sacrificing too much quantity then she may want to skip it. So far I have been very happy with my choice and even if it comes back someday I really don't think that I will have second thoughts because there is no fool proof way of beating it.
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presently, there is a clinical trial that your mom might be eligible to participate in. Rxponder is a trial for patients who have several nodes positive and low or intermediate OncotypeDX scores. It is trying to determine if chemo is warranted despite low OncotypeDX DX scores. Your mom's medical oncologist is the person who will help her decide what treatment plan is right for her. If your mom is still unsure, she can get a second or third opinion from other medical oncologists. She can also ask that her case be presented before a tumor board.
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Very interested in what you find out. My mom was also just recently diagnosed with ILC and although her tumor was small, she had one sentinel node that was positive with a micromestases (she just had a lumpectomy). We met with the oncologist the other day and he is going to do the Oncotype test, but he basically laid it out that it would be up to her when the results come back to decide whether to do the hormones and radiation, or hormones, radiation and chemotherapy. I am concerned that even if she had a high oncotype, my mom would choose the non chemo option because she doesn't want to go through it. I guess I'm just looking for advice, too. My mom is super healthy and active and I want her to be happy, but I also don't want her to ignore options because she doesn't want to do chemo.
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Hi Becca,
I was diagnosed with ILC in 2006 at the age of 50. It was only 1 cm and no nodes involved. I had the Oncotype test and scored a 9 so no chemo. I had a lumpectomy, 34 radiation treatments and 4 years of Tamoxifen. It came back in the same place exactly 4 years after the 1st time. I was given dose dense chemo for 5 months and followed with a double MX. Pathology report showed the breast still had ILC cancer in it but everything had shrunk in size. I'm currently taking Arimidex and my oncologist said I will remain on it until it quits working. I would recommend chemo of some kind if it was me. I know if it comes back a third time, I've done everything I can to prevent it. Good luck with your mom.
Nancy
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I was diagnosed at age 62 with 2 positive nodes. Granted I had a low grade and relatively small, 1.3 cm tumor, but due to the Oncotype score of 14 I received no chemo. I have been on Aromasin only for 2 1/2 years now and doing fine. The MO is who she should listen to, not an RO. Best wishes to you and your mom!
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I will chime in here. I am 5 years younger than your mother, but had similar situation - positive nodes, Stage 2. My oncotype was 16 - within the range where chemo is not recommended. After getting the results, I was concerned that I was not doing enough, but decided to live with my decision.
I am currently reading 2 books (yes, at the same time): Emperor of all Maladies and How We Do Harm. These books have convinced me that:
1) Advancements in cancer treatment are occurring all the time - when I was a child, the normal treatment for all breast cancers was a radical mastectomy. Now they are almost NEVER done because they are overly aggressive.
2) Patients go through all kinds of expensive and ineffective treatment because doctors are not aware of the latest research.
I am now very happy with my decision. I am thankful that I did not let fear cause me to do something that could have had terrible long-term effects.
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Hi everyone! Thank you so much for your responses. Sorry I didn't log back in yesterday. My mom did meet with an oncologist, but she said it was completely up to my mom. She said that due to her low score, it was possible that chemo would be unnecessary. What she really wanted my mom to do was participate in the rest of the study (where her name would be selected for either option: chemo or no chemo), but that suggestion was in the name of medical research, not my mom's best interests.
My mom is on the phone with me now, so I will add more information in a minute!
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Hello again,
My mom and I were going through her paperwork over the phone and couldn't find information about the grade. I guess I'm also the worst daughter ever, because I thought the surgeon said her tumor was 5cm, but my mom believes it was smaller than that. Her doctors keep saying that her tumor was very large... and I could have sworn they said it was 5cm. My mom said it was more like 2cm, so now we're both confused! She just called both her oncologist and the radiologist (had to leave messages) to gather that information for our research and to add to the discussion here. I apologize for sounding like an idiot.
Both her oncologist and radiologist have said that they support her decision not to have chemo based on her age. They both said that if she were younger, they would be more aggressive and insist on chemo. That doesn't make sense to me! She's only 62... that's not old. Other than having cancer, she has a clean bill of health. And like I said before, she's RVing around the US, doing all sorts of fun things... Not sitting at home, or rotting away in a nursing home (like my husband's grandma who is the same age as my mom). **sigh** She's healthy!
And I'm not sure I believe the recurrence score matters, because it only looks at the next 10 years (actually, the paperwork we just read said only 5 years, based on her 2 positive nodes). I'm sorry, but I think she deserves the same treatment as someone in their forties, if for no other reason than she's a very active, healthy person. 5 years from now, she'll still be in her sixties. 10 years from now, only 72. Twenty years only 82. She's healthy enough to live to 100! Why don't they treat it that way? :-\
Sorry. I'm frustrated.
I'll post more info once she hears back from the oncologist with her grade and tumor size. In the meantime, thank you all for responding!
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Bstorm,
I'm so sorry your mom is dealing with this. Although I'm younger and had negative nodes, I did a lot of research into chemo and oncotype score (mine was low, so no chemo). But, what I did learn that isn't always clear when focusing on recurrence rates and % benefits is that not only can the Oncotype score be predictive of recurrence, but also whether the cancer will respond to chemo. Slow growing tumors, which tend to have low recurrence scores are also the type that don't respond as well to chemo, since chemo drugs target highly proliferating cells. Your mom should ask about the likely response to chemo of the tumor itself. It may be that hormonal meds like aromatase inhibitors or tamoxifen would actually be more effective for your mom than chemo. This was a bit of a difficult concept for me (and my husband) to grasp initially -- that oncotype not only predicts recurrence rate but also likely benefit from chemo. Those are two separate points that should be considered. Chemo does have significant risks, and therefore should be considered when the likely benefit outweighs the risks. I would consider getting a second opinion and make sure the doctor explains the oncotype score sufficiently.
Good luck and hang in there.
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Bstorm, younger women also often get chemo because their tumors tend to be more aggressive. There's no hard and fast rule, however. I am glad I didn't get chemo, because the toxic effects can be as bad as cancer. Of course I would have gotten chemo if my MO recommended it, but fortunately for me that didn't happen. Als are VERY powerful agents against reoccurrence. Some Stage IV women on this board have only been on Als since their diagnoses, have not had chemo and are living large : ). Again, there isn't a cookie cutter process to making these decisions.
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Hi Becca, I also have ILC - just turned 51 - 6cm tumor. My oncologist insists on the chemo to shrink the tumor before surgery. I have also questioned this due to I am so scared of Chemo. But my Breast Surgeon who is known to be top of the line explained to me that this will save my life and it is a must. I have read and read and have different views going on in my head but I know women that have used my oncologist and swear by him. They are 10 years and more out and are all doing great! I know how hard this must be for you and your Mom of course. I also never had a health issue, never took a pill and have tons of energy! This is a big change for me. Please keep in touch, VeraAnn
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Thank you! That is very, very helpful. We are making an appointment with the oncologist to discuss the OncoDx score in more depth. We'll be sure to ask about the type of tumor cells; slow-growing or proliferating. That will help us make a firm decision, without feeling wishy-washy about it. Making a decision has been a very frustrating process. Mostly because the oncologist said it was completely up to my mom, without strongly suggesting any specific treatment path. We sort of feel like fish out of water here.
Anyways, we are making a list of questions to ask the oncologist. Thanks again for the responses.
*I removed some information that wasn't pertinent. Trying to keep my emotions out of it and staying positive!
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Bstorm
You are a wonderful daughter and I am sure your mom is forever grateful for your love, support and research!!
I am almost 52 years old and consider myself active like your mom. I had one positive node and was grade 1, er/pr+ with oncotype 16. My oncologist told me the standard of care was chemo and informed me about the clinical trial that your mom's MO suggested. It is called RxPonder and I have attached the linkhttp://www.swog.org/Visitors/S1007/patients.asp
Like your mom, I wanted to get out of chemo, if possible, was accepted into the trial and ended up in the chemo arm. Disappointed, yes, but, I decided to stay with the trial and have finished 4 rounds of chemo. It is doable and as good of shape as your mom is in she should do fine. She will get through it if that is what she decides to do. I won't say it is a cake walk and it will put a damper on her lifestyle for a short period of time.
One thing I like about being in this trial is that you are followed closely my your MO and clinical trial nurse. I take some comfort in that.
Good luck with your mom and her decision. Keep us posted!
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Hi Becca,
My mother was diagnosed at 47/48 (pre-menopausal) with ILC, estimated before pathology at 6cm+. Nodes unknown at the time, she was highly ER+/PR+ but they recommended her for chemo anyway as she was premenopausal, and they wanted to try and shrink tumour before surgery (mainly they were concerned about distance from chest wall). Generally what they mean when they say young is premenopausal. No, 62 is not old and for most they are still active, working and so on, I sure plan to be, but it is considered pretty average for breast cancer standards rather than "young". So it is not a judgment on your mothers current lifestyle, attitude, or heart! Post-menopausal cancers are often (not always) slower growing and therefore less responsive to chemo, and the chemo can be harder even on the young at heart after menopause.
Anyway, my mum had chemo, and actually had extra chemo as the tumour did not respond well enough to first cocktails and then surgery where she had 19+ nodes removed (her final staging was III, so higher than your mother's). She had bilateral mastectomies, 6 weeks of rads, 5 years of Tamoxifen, and 3 years of Arimedex before she was diagnosed with metastatic recurrence (now she is on a different AI, no chemo at this point). I say this to say chemo is not a magic bullet and can have some bad side effects and risks (it did for my mum...doable, but she had some long term side effects and some of those were impacting her own very active and healthy life negatively) and unless there are really strong reasons as to why your mother is recommended for chemo, the potential risks and side effects - including to her lifestyle - may outweigh any benefit she would have from the chemo. A minor reduction in recurrence - like a couple percentage points or fractions of a percentage - might come with big trade offs, you know...ones that can even defeat the purpose of trying to increase her long term survival.
I definitely do think seeking a second opinion - from a MO not a RO - is a great idea, as is thoroughly discussing with them the potential risks and potential benefits. Ultimately all your mother can do is make a decision based on what information she has now, there just aren't guarantees. There just isn't a cure. I wish you both the best.
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I was 52 when diagnosed. I'm stage II with 2 positive nodes & an oncotype of "4". I did not do chemo & had to make the decision. My son was 13 at the time.
As for my Mom, she never had cancer of any kind. I thought she would live to be 100. Far healthier & more active than anyone else's mother. Unfortunately that wasn't the case. She died at 77 from ProgressiveSuperNuclearPalsy about 10yrs ago. Honestly, I would prefer to die from cancer.
I'm healthy except for breast cancer & the side effects from the treatments I did have. Your mom may not want to risk losing her good health. She saw what her husband went thru.
If my cancer, grade1/low oncotype, comes back, it will likely be several years down the road. If it were to come back in the first five years it would be because they missed it at the time of diagnosis.
I'm enjoying my life & know there are no guarantees. When I start to whine about my aches & pains, I wish someone shake some sense into me & remind me how well I'm doing.
I wish your mom well. I struggled with the chemo decision for a long time. I will never know if I made the right decision. If it comes back it might have come back anyway. If I die of something else, maybe I just didn't live long enough for it to come back.
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bstorm - such a dilemma for your Mom. I am in her age group and my Oncotype score was 11. I did have a micromet in the SN which prompted my ONC to order the Oncotype test. Being node positive is not automatic chemo anymore thus the reason for the Oncotype test. Your mom has a very low score. My ONC did not base my treatment decision on my age - it was my score. However, I had a smaller tumor and the fact your Mom's is larger may be a factor to consider chemo. Having said that the Oncotype test score is being used more and more by Oncologists to save patients from all the SEs and costs of chemo.
I yielded to my Oncologist. That is the go to person from now on not your BS. Btw my BS said the micromet meant chemo. Not his call and it didn't. Good luck. Whatever your mother decides she shouldn't second guess herself and remember its her decision and her life. A number of women on this site have made decisions contrary to their doctors.
Diane
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As I mentioned earlier, if your mom has doubts about her treatment plan, she can request that her case be presented to a tumor board.
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bstorm, I know that this is very hard for you but now you know how parents feel when their young adult children are struggling with difficult decisions and choose a different path from what a parent would choose. Given the circumstances it is perfectly understandable that your worst terror would be to lose you other parent and that your mother's worst fear would be that the rest of her life the quality of her life would be compromised by the effects of the treatment. Cancer treatment has come a long way in the last 20 years but chemo is still a crap shoot in terms of what the long term effects will be because each person reacts so differently. By your mother's age a woman has a pretty good feeling for when to trust her gut as to what is right for her. There are no sure facts either way, so in the end the patient has to process what facts there are and then listen to her body and heart and decide what is best for her. As someone with adult children I would encourage you to step back and trust your mother and tell her you love her and will support her which ever way she chooses. Isn't that what you would want her to do for you if your positions were reversed?
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Thank you all for sharing your experience with this. It is extremely helpful!
Voraciousreader, her case was reviewed before a tumor board. They suggested chemo, but then her oncologist recommended the oncotype dx and wanted my mom to participate in the clinical trial (yes, the RxPonder), but my mom wasn't comfortable with the choice for treatment being taken away from her. Her oncologist was comfortable with no chemo, but my mom just wants to understand things better before deciding.
MMSS,
Yes, of course! That's exactly what I do, too. I have been doing research on both sides--for and against chemo--and presenting the information to her in the least biased way possible. She knows that I will support her decision, no matter what it is. I'm just trying to do extra research to help her get all the facts so that when she does finally make a decision, she is confident in her choice and knows why she chose that path. For instance, if she chooses not to have chemo, it will be because her tumor cells are slow-growing and won't respond well to treatment... not because it helps her keep her hair or get back on the road sooner.
And on the reverse, if she chooses to have chemo, it will be because her cancer cells will respond well to it, not just because it is the traditional treatment path. I'm just trying to help her take the emotions out of the decision... And to do that, I'm trying very hard to keep my own emotions out of it! It's difficult, but I'm the type of person that will research the hell out of things in order to understand them better. And that's exactly why I joined this forum... to do more research as well as hear personal stories from women in the same shoes.
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b....just wondering if it's not too late to go back to the tumor board with the OncotypeDX results. Surprised it wasn't included at the board's meeting.
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That's a good idea! I'll suggest it and see if that's something we can work out. It would make sense anyway. Also, she heard back from her oncologist today. Her tumor was very large. They said her it was 2.6 inches (as in 6.5 centimeters)! So that means it was even bigger than I thought. I'm just glad it's out of her now... plus, she had clear margins, and her CT and PET scans came back clear, too. So that's all very reassuring. We're meeting with her oncologist on Tuesday, and we'll be bringing a list of questions. We'll definitely ask about having it presented to the tumor board again, but can anyone else suggest any other questions we should ask? Thanks again for all the help!
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Please ask for the full report that comes with the score. It has very helpful graphs.
You can see where the margins of error fall.
In the very very low oncotype, the survival rate is very nearly worse with chemo. Not sure where that number falls, and I recall it is just one of the margin of error lines, but it is something to think about.
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HI Becca!
I'm late to chime in here :-) I completelly understand the back and forth about chemo. I think we all look for ways to avoid it because it is scary! I had a ton of positive nodes but a very low Ki-67 and oncotype of 13. They did the onco from my biopsy tissue. If they had seen all the nodes first they would never have agreed to run the test. Only 1-3 nodes showed up on any of my imaging. Mammo, US, PET, MRI, you name it and they didn't show up, but my Sentinal node and beyond lit up like a Christmas Tree when they injected the dye before surgery. Lobular is such a sneaky bastard!
The docs were kind of stumped as to why I had 22 positive nodes but extremely slow growing non aggressive cells. If I heard the word "interesting" one more time, I was going to scream!!
We didn't do chemo prior to surgery because my MO had said that chemo doesn't do a lot to shrink Lobular. Chemo is designed to go after the more aggressive cells and since mine were so slow growing they couldn't give me any indication that chemo would work well on my cells. So surgery came first.
Then they found 22 out of 32 nodes were infected, so chemo it is! However, because of the conflicting pathology, 22 nodes vs. grade one Ki-67 of 7, I was able to pick which chemo to do and I chose not to do the Red Devil! I did four rounds of Taxotere/Cytoxan. I asked about doing 6 (more than once) and I was told each time I asked that no research indicated that 6 had any better outcome than 4.
Chemo hits everyone different, but I really had no problems with it. A few annoying things, but no days in bed feeling crappy. I also cold capped and kept most of my hair. It really works! If you want some info or have any questions I am happy to help. I have tried to help and "coached" a few other girls through it.
I am in a different place than your mom with 4 kids at home in school! I was 47 when diagnosed. Even though I didn't want to do the chemo I could not look at my kids and know I didn't try everything I could. It was tough just choosing a different chemo than what most oncs, I saw 5, wanted me to do. They saw 22 and automatically went for the strongest just because. My onc was upfront and told me that was basically an emotional, gut reaction on his part and he supported me 100% whatever I chose because he knew I was making an educated decision. We depated studies for over 2 hours!!
Bottom line, it's all one big crap shoot and you have to go with your gut.
Best of luck for your mom and bless you for being by her side. I know it means the world to her!
Lynne
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We don't have the Oncotype DX test here in Australia, I sure wish they did. Over here their golden rule is once you have positive nodes it's automatically chemo but I have heard a few times that lobular doesn't respond very well to chemo because of its slow growing nature. -
my stats are stage 3A, grade 2, had two different KI67 scores, with over 50% difference between the two, over 5cm largest tumoration, 7 positive nodes and I refused chemo as was nearly 100% ER and PR positive
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Hi Tania69,
That's too bad-I have been waiting to hear back about my mom's test and because I have a hard time waiting for things, I have found some other tools online that "helped" estimate things...
http://path.upmc.edu/onlineTools/MageeEquations.ht...
If you have the information from the path report-you can plug some of the numbers in here and come up with an approximation. I'm not a medical professional, but it at least gave me an idea...
There are also other tests or tools online I didn't look further into that may be available-one is called Adjuvant! Online and the other is called the Mammaprint Test-maybe those are things you can look into.
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That's great. Thanks for the link Cheshire84, I'll look into it.
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