Do I need a Chemo

hw0006

Hello sisters,

I was diagnosed with IDC BC in April. I just had mastectomy in June. Below is my tumor information:

1.3 IDC with 20% DCIS

ER/PR positive

HER2 negative

Ki67 10%

oncotypeDX score 11

 stage 1

 My doctor chose to have no chemo for me. I am taking tamoxifen at home now. However I am very  concerned about running my life in a risk without chemo. Can any on you give me some advice?

Thank you all

linda

ICanDoThis

Hi!

Not only do you not need chemo, you are in more danger from the chemo than you are from the cancer!

That's what Grade 1, Oncotype 11, Ki67 10% means

My diagnosis was very similar, and I also found it very scary. TV and movies say we are supposed to have chemo, throw up, lose our hair, all those things. But, now, just as they found that a sentinal node biopsy does everything that is needed for Stage 1, and so there is no need for a complete axillary dissection, they are also finding that chemo doesn't really work very well on slow, lazy cancers (like yours, and, thankfully, like mine!). But chemo can be dangerous, so they only do it when there is a clear statistical benefit.

I felt like they didn't care about me. That's not true. But it took a while for me to wrap my head around this. Now, I'm glad.

If you would like some hints for getting shortcuts around radiation, send me a PM, or answer this message.

Hugs -

Annicemd

Hi Linda,

I am in similar situation to you. I had 2 IDC s but stage 1 grade 1 with oncotype DX score of 8 and 1 for the 2 tumours. I had mastectomy and was offered tamoxifen only. I have read widely and I am in the medical profession and it seems chemo does not provide an improved outcome in this situation. However there is still a small risk of recurrence in the long term so I have decided to go for additional treatment. If you are pre-menopausal you may consider ovarian suppression (chemical menopause) with injections of zoladex. I am having that and also a treatment called zometa which is also thought to reduce risk of recurrence in the long-term for early stage, however the latter may not be covered by your insurance as it is cutting edge but not an established treatment. On a positive note If you look on adjuvant on line your long term outcome will be very good (95% at ten years) with tamoxifen alone. Good luck with your treatment plan,

Annice

hw0006

Hi all,

Thanks for all your information. I will make an appointment with my doctor and to re-discuss my treatment. I really worry about recurrence and any microsope metastasis. This drives me crazy everyday!

God bless all of you,

linda

rtpana

Dear Linda:

I was in your place 5 years ago and also drove myself crazy. My tumor size and Oncotype score were slightly worse than yours (1.3, 13) but I could not find one person to recommend chemo. If you see the clinical trial results from the Oncotype trial adding chemo actually decreased survival over time. Yet, I have my 5 year physical on Thursday and illogically still wonder if I should have taken chemo. There are reports that exercise and drinking 2-3 cups of caffeinated green tea a day can give you an edge. I switched to Femara after 2 years on Tamoxifen so that should also provide an extra edge.I do promise that you will have days that you will forget that you have cancer but not the month before your annual check-up Best of luck. Ana

snicklefritz

Hello HW:

How old are you?  If you are younger than 55 or so, I might do the chemo because your tumor grade is 2.  Just a thought! 

hw0006

I am 41 with 2-yr-old child. If I choose to have chemo, will it be too late. I had surgery at 6/2. do you know if the tamoxifin I am taking will reduce the benefit from Chemo?

snicklefritz

Hi there:

 I guess you would have to ask the doctor about that.  I can not imagine it would be too late for chemo if you were to choose to do it.

Beanpole

Linda,



I'm really curious why when you were Stage 1 you got a mastectomy instead or lumpectomy? Was it your choice or the Doctors? I'm starting to get concerned because I'm reading all these stage 1 IDC ladies going this route. I was just diagnosed last week and don't meet with the surgeon until next Friday but was really hoping I was going to skate by without mastectomy or chemo. My situation is similar to yours from what I know so far.

9mm ER+PR+ Her 2neg low grade tumor.

I'm so confused by the differences in treatment.

Linda

hw0006

yes. It was doctor's decision. your tumor is very smaller than mine.

mm3557

Trust your doctors. And if you don't trust your doctors, find new ones. Your oncologist and/or breast surgeon should be able to explain why s/he is recommending chemo (or not), mastectomy (or not), etc., in a way that you can understand and provide written information to help you understand. You should not feel rushed when meeting with them, and you should not feel intimated to ask questions. It may help to take a friend with you to appointments so that you have a second set of (less emotional) ears - during my early appointments I went with a friend; we would then go for a coke and I would repeat back what I thought I had heard so that she could help confirm. I also know of folks who take a small tape recorder so they can listen again later. Written information on the Oncotype test is available from the company website (www.oncotypeDX.com). Remember that while the web is a great soure of information, it can also be a source of unneeded angst, so don't spend too much time trolling websites (including this one). The Mayo clinic website is a good, thorough, place to find basic, factual infomation. (p.s. My #s were all very similar to yours; I had a mastectomy because there were 2 separate small lumps, making lumpectomies inadvisable; no chemo because of the Oncotype test. Immediate reconstuction with latissimus dorsi; went extremely well; am just a year out, but doing great.)

renmars21

Hi Linda,

I could have wrote your post.  I am 41, with a 6 year old child, premenopausal and I too was diagnosed with DCIS with a 1.1mm microinvasion putting me at Stage 1a.  I am highly ER positive but PR Negative, I also had a .08 Isolated Tumor Cell go the the lymph node. Due to this my oncologist sent it out for an oncotype score.  Because the sample was small, they couldnt get a score so my oncologist said no chemo.  He didnt explain why he chose no chemo and Ive worried the last 6 months that I had made a mistake.  Well, I"m happy to say that I spoke with my breast surgeon and a new onocloist and am at ease with the no chemo decision.  They both told me with my diagnosis, chemo would have done more harm than good. 

Keep asking questions until you are satisfied and comfortable with your treatment. I have to say that this is the first time in 6 months that I am somewhat at ease.

 Feel free to PM me with any questions.

peachy-pie

I have the same question.   I got my oncotype score today,  and it was a 19.   I decided to have the braca test done to help me decide about chemo,  as my Great Aunt, Aunt and cousin all had breast cancer.   I am on the first peg of the intermediate risk chart.   I was told I have a 12% chance the cancer will return,  which is pretty low to me.   I really do not want chemo if I don't need it.   I had my surgery and radiation and feel great.   I dread the thought of being sick and having possible side effects from chemo when I feel so good.   So depending on what the braca test says next week,  I may or may not have chemo.    I am praying it comes back negative!    I will still have to take Tamoxifin for 5 yrs,  and I am Ok with that.    What are your thoughts on having a score of 19?   should I or shouldn't I ?    any feedback appreciated. 

zumbagirl

Beanpole,

I had two lumpectomies, and they got it all, and it isn't that noticeable that part of one breast is missing. My surgeon gave me the choice, and I chose lumpectomy. He said he only does two, and if the margins weren't clean, after two , then full breast removal would be necessary, but in my case two was enough.

peggy_j

Sorry to hear you're going through this. It's a tough, scary decision. FWIW, my MO disrecommended chemo because my tumor was grade 1 and small, 0.5 cm  She said both are contraindications for chemo (i.e. the benefit from chemo would be less than potential downsides). Did your MO give an estimate for how much you'll "benefit" from chemo? i.e. the absolute reduction in the risk of recurrence? In my case, she said I would probably only "benefit" from a ~3% reduction in risk of recurrence due to chemo (with tamoxifen, she expects a 9% reduction). FWIW, the journalist Barbara Ehrenreich was surprised that many woman only receive a 7-11% absolute reduction in risk. So chemo can be helpful treatment but the risk-reward trade off is not always clear.

If you're unsure, perhaps it would help to get a second or even third opinion??? I've heard women here say they went to three different docs and got three different opinions (definitely yes, definitely no, and maybe). That would be frustrating but it may be helpful to know it's not cut and dry and that there's a lot to consider, including quality of life. FWIW, the pathology report from my biopsy had estimated my tumor to be grade 2 and initially my docs had said that my age (46) might be the tipping point for recommending chemo. (due to long life expectancy) I've also seen studies where women under 50 "benefit" more from chemo. (I didn't read them in detail, so it could be linked to long life expectancy).

FWIW, someone here said she stopped taking tamoxifen when she was reconsidering the chemo decision, so maybe a quick call to the doctor's office could clarify? I read Dr. Love's book this week and she said tamoxifen takes six weeks to flush from your system, so if there is an interaction between tamoxifen and chemo meds, you may need to wait for it to clear.

Best of luck! I know this whole decision process is so stressful! 

red64

So glad I found this thread - I was going to start a new one about the same topic - I was diagnosed July 1 with IDC and DCIS in my left breast.  had double mastectomy on 7/27.  The left mastectomy specimen had clean margins for invasive cancer but the DCIS was < 0.1mm from the deep margin.

Final pathology reports Stage 1, Grade 2, node negative, ER+/PR+ tumor.  HER2 was equivocal X 2 and negative X 1.  Oncotype Dx 13. 

Considered radiation for the close margin but decided against it and passed on chemo due to the path and low oncotype.  I started Tamoxifen about three weeks ago - plan is 5 years on Tamoxifen and 5 years on an AI.

Problem is I feel like I haven't done enough and I am terrified that I will have a recurrence.  I know I am making the right treatment decisions but I also can't stop worrying - constantly on the Internet reading, researching, etc.  

How long does it take to just feel grateful that you are doing well and start moving past this fear?

bluepearl

From an oncology journal, they said the vast majority of women with stage 1 and 2 breast cancers are cured by the surgery alone. What they are trying to do is determine who will benefit from adjuvant therapies and who won't because right now no one knows, so within different parameters, they determine radiation (lumpectomy OR mastectomy with tumor close to chest wall), hormones if ER/PR +, chemo if the tumor grade indicates it. Slow growing tumors don't benefit or respond to chemo enough to make it worthwhile...in fact, you might just make yourself worse off from the chemo side effects while deriving absolutely NO benefit from chemo. That being said, strangely enough, small, slow growing cancers tend to show up way down the pike at maybe 15 years...so take the hormones! Women who have hormone negative cancers and reamin cancer-free for 5 years, drop down dramatically for recurrences while ER/PR+, slow growers ease off more slowly. Crappy eh? Might have something to do with the internal mammary nodes which are never tested despite a small perentage of tumors do drain into them as well as auxilla and smaller percentage yet, that drain exclusively into them. So, take your hormones! The little lazy guys die from hormone starvation but give chemo the middle finger.

Annicemd

Blue pearl you put that beautifully and are so spot on correct with everything you said.

The hormones are so important for ER positive BC because of the 'micromets' that can reappear years later but can be starved to death over time by the tamox/AIs

Red64 if you are pre menopausal have you considered ovarian suppression to starve any mico mets even more?

red64

I am premenopausal (age 47) - My MO said that if my period doesn't stop by 6 months then we would consider "shots" to stop it.  I am taking the Tamoxifen (about 3 weeks) and have not really had any side effects yet.  So far so good.  Thanks for responding - it helps me to vent about my anxiety but I hate the thought that I could face this again when I'm 67!

LivingLifeNow

I went through a similar situation 2 years ago. ER/PR +, HER2 -, 1.5 cm, Stage 1, Grade 1. Even though I had clear margins on the tumor, they couldn't take as much tissue as they wanted to because of its location. For that reason I had radiation. I had chosen to have a BMX because the location of the tumor would require removal of the areaola and nipple anyway. This was an opportunity for me to get nice, new ones! Ha!

Although my Oncotype score was 19, and my MO weakly recommended chemo based on my "young" age (48 at the time). He did tell me that having chemo would reduce my risk of a distant recurrence by 1.5%. That was just not enough of a reduction for me to agree to chemo. Besides, every woman has a 12.5% chance of getting BC in the first place. My chance of a recurrence was 12%. So I ask you, with those statistics, shouldn't every woman have chemo just in case she MIGHT get BC?

Overall, I am comfortable with my decision not to have chemo. I know of a number of women who had chemo and still had a recurrence a few years later. I wonder if the chemo had no effect on the slow growing cancer but managed to weaken their immune system's abiltiy to fight off the cancer, causing the tamoxifen to be less effective.

I also feel that with current research, there is a good chance that in the next decade or two less destructive treatments will be available. Keep the hope alive!

jwilco

I am still trying to make my final decision on chemo and came across this post and thought I would see if there are any opinions.  I had UMX on 10/11/11, through all my conversations with my BS when I mentioned not knowing about chemo she always said she didn't think I would have to do it.  All the members of the "team" meet together about the patients.  So I assume by her comments that she had already had conversations/meetings where my case was discussed.  I was at that time still waiting on the HER2 status.  I have IDC >1cm, stage 1a, grade 1, ER/PR+, 0/1 node.  The HER2 came back as negative.  So when I finally met with the oncologyst after my surgery he didn't come out and say Yes you need chemo, nor did he come out and say NO you don't need chemo.  He just stated a bunch of percentages and that chemo decreased my recurrance by 3%.  My real benefit was the Tamoxifen, which I already knew I would need to take.  (I'm 47) I decided to get the Onco test done to help with my decision but after going back and reading through all my paperwork they gave me with all the recommendations from the beginning, no where in there is the section for chemo marked.  It was lumpectomy/radiation/homone or it was mastectomy/hormone. 

 I'm really really feeling stressed with this decision.  I meet again with the oncologyst on Tuesday and hope to have the Onco test results.  Deep inside I don't want to do the chemo.  I'm worried that it will be too hard on me and not really guarantee anything.  

RaiderGirl

I was diagnosed with stage 1 on June 26, lumpectomy on July 3. I was told that the surgeon must offer mastectomy and that insurance must pay for it. Mastectomy erases the recurrance in that breast so many woman choose that way.

I choose lumpectomy . I was told that radiation is a must. Chemo will depend on the Onco test. Results are tomorrow.

Truthfully I am more afraid the the hormony therapy than chemo.

MomtoIrishQuads

RaiderGirl - what's your oncotype score? 

MomtoIrishQuads

Here's something to consider.....I am on the fence according my MO (medical oncologist) so it was described that chemo is "an insurance policy" for me.  I went into chemo last week and have regretted the decision without more information.  It was not a walk in the park and I wish that I had gotten another opinion before I subjected my body to the hell.  

I'm going to get another opinion before I do any more rounds.....it's not something to take lightly - know your risks and benefits before you undertake it - and also the potential side effects (and how to counteract them) if you do proceed.

wrenn

raidergirl, recurrence isn't erased in that breast with mastectomy. Lumpectomy has same results. 

It's too bad we all feel so rushed with these decisions before we have had time to do the research.  I felt rushed and was too emotional to think straight.

My education came from the women here. I regret having my one dose of chemo but many are fine with it.

jetgal23

RaiderGirl - I'm with you on your concerns.  I have an Oncotype score of 21 so now I'm having the Mammaprint test to help make chemo decisions.  Just got approved yesterday so it'll be another week or 2 before I find out.  I hear positive and negative things about chemo, but my bigger fear is the tamoxifin which caused my mom a blood clot (I know its rare to have this) and I've had a previous pulmonary embolism likely from estrogen patch (birth control).  So they will likely shut down my ovaries, but I've got a long way to go before I get there since radiation will take place too.  I'm trying to read other stories now before I'm faced with this decision.

MomtoIrishQuads

Jetgal,

Looks like we are twins.  I was diagnosed in April, too.  IDC, Stage 1, Grade 3, no nodes, ER/PR+ and Her2- with an oncatype score of 21.  I gave chemo a try (T/C) - but the side effects really took it out of me so decided to drop out after one treatment - I felt that I was damaging my body for not a significant decrease in recurrence rate.  But until the TailorX study comes out - it's anyone's guess as to whether or not chemo will help us.  The Grade 3 (some evidence of LVI) did give me pause - but I listened to my body this time.  I'm a week into radiation and then Armidex.  I hope that the Mammoprint test gives you more guidance. 

Meow13

My oncodx was 34 I didn't do chemo I am almost 3 years out. So far so good but hate se from exemestane

jetgal23

MomtoQuads - I got my Mammaprint score this week and I am high risk.  So I will start chemo on Wednesday morning...I did not know all that goes with it.  Anti-nausea meds the day before, day of and day after treatment, followed by the Neulasta shot 2 days later for increase white blood cells.  I've heard its the shot that can cause nausea more than anything else, but I would know until I try it all.  I'm a bit overwhelmed but its finally settling in.  I've tackled marathons and triathlons in my past with lots of pain and discomfort and fatigue, but this seems very unknown to me.  So we'll see how it goes.  Only 4 treatments.  Taxotere and Cyotaxin (may not have spelled it right).  I hear the first treatment may not be so bad but after that the side effects may kick in.  Getting prepared to lose my hair, will likely cut it soon.   I wish you all well...