Did anyone freak out from NOT getting recommendation for chemo?

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maiyen
maiyen Member Posts: 81
edited August 2018 in IDC (Invasive Ductal Carcinoma)

I've seen many people worry when their MO recommends chemo for them, but I'm finding myself starting to freak out because both of the MO's that I've seen recommended that I don't do chemo. Their thoughts are that the side effects and risks would outweigh the benefits since I am highly ER/PR+ and HER2-, but I know that chemo is done to reduce distant recurrences so part of me feels afraid if I skip it? I guess when I saw the TAILORx results that showed patients with scores 16-25 and younger than 50 should do chemo...I assumed that included me in that group since my Oncotype score is 17 and I'm 43.

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2018

    do you have cancer in any lymph nodes? That is a factor in addition to oncotype analysis.


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  • moth
    moth Member Posts: 4,800
    edited July 2018

    My MO told me at the beginning that she guided her chemo decisions on several factors including:

    Grade of tumor

    size of tumor

    hormone receptor status

    lymphovascular invasion

    positive/neg lymph nodes

    age of patient

    Any of these on their own might make her recommend, or at least consider a course of chemo. I was older than you and was prepped to fight for chemo if I got an intermediate score but that turned out to be unnecessary as I got reclassified as triple neg (& Oncotype score generated was through the roof...) We didn't even do Oncotype here in my province until a couple years ago so these were the items that went into the clinical decision making.

    Given your age & Oncotype score, you're absolutely right that your MO should be discussing the relative benefits & risks of chemo with you.

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  • maiyen
    maiyen Member Posts: 81
    edited August 2018

    Runrcrb, I did not have cancer in my node, and they only took one since it was negative.

    Sorry...didn't realize that I had my diagnosis set to private.

    moth, final path report says lymphovascular invasion: not identified.

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2018

    Chemo doesn't guarantee no distant recurrence. I thought of it as attacking anything floating around my systems. I had several positive lymph nodes. My oncotype indicated low probability of recurrence and without the lymph involvement, I would have skipped chemo. I had less chemo than someone with more lymph involvement or a higher grade (i didn't have the taxol that many have).

    I recommend that you talk to your MO again with a goal to get an understanding of why she doesn't think chemo is necessary. For your peace of mind, I also suggest a second opinion. If the second one matches the first, then that will likely make you more confident. If it's split, you can go for a tie breaker or go with the chemo. Chemo is not a walk in the park, although i found radiation harder, and neither guarantees no recurrence. Nothing really does that.


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  • moth
    moth Member Posts: 4,800
    edited July 2018

    Runrcrb is right - there are no guarantees. This is a giant game of odds & you can do everything right & still end up on the wrong side, & vice versa.

    But if you put in your stats into one of the calculators you can see how many people with similar dx are alive 5,10,15 years down the road & whether their death was due to cancer or other causes.... & how chemo & endocrine therapy can affect those probabilities. But bottom line is you can have a risk of less than 1% and still have something happen to you. I had extremely low risk of getting breast cancer in the first place...& yet here I am.

    That said, when I looked at my cancer outcome probabilities, I knew that I wanted to shrink that probability bar to as little as possible so I'm throwing everything at it. (& also thus my constant harping about the studies showing exercise being the biggest lifestyle modification factor with one study saying risk of recurrence was reduced approx 40% )

    http://www.lifemath.net/cancer/breastcancer/therap...

    http://www.predict.nhs.uk/predict_v2.1/tool


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  • maiyen
    maiyen Member Posts: 81
    edited August 2018

    Runrcrb, yes that's true that chemo doesn't guarantee distant recurrence. It's just hard for me mentally to see that it can help to prevent distant recurrences, but my doctors are telling me not to do it. When I met with the second MO yesterday, he said he wouldn't recommend chemo because I am luminal A and he said that endocrine therapy would be far more effective for me. But I read one article that states luminal A means Ki67 is less than 15% and mine is 30% and a different article states luminal A means ER/PR+, HER2- with no regards to Ki67 as long as the PR is positive so I'm confused on whether I'm actually luminal A or not? I will need radiation regardless so I'm just trying to figure out this chemo part because I know that goes before rads. My first MO was leaning toward no chemo when I first saw her and she said we'll discuss it more once I get my final path report from surgery.

    moth, thanks for the links to the calculators. I kind of feel like you where I'm willing to be more aggressive early on if it will reduce my risk of recurrence as all of this terrifies me.

    Thanks to both of you for your input.

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  • pupmom
    pupmom Member Posts: 5,068
    edited July 2018

    No, I was very relieved. Oncotype DX indicated I was more likely to die from chemo than cancer.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2018

    I was worried when they said no chemo. I had a positive node and am young. But based on mammaprint results they didn't recommend it. I was relieved yes, but I do still worry that maybe we didn't do enough.

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  • TrailDweller
    TrailDweller Member Posts: 51
    edited July 2018

    Thank you Moth for the links to the calculators, that was very helpful.


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  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2018

    Maiyen you seem to be doing all the right things- tons of research and creating a list of questions for your doctors. Keep pushing until you feel good about the decisions being made. I barely understood the oncotype thing (and my printed report was in bad physical condition so it was hard to read anyway) and although i was 100% ER and PR+ and low likelihood of recurrence, the number of nodes put me into the benefit from chemo.

    I struggled with the single vs double mastectomy and spent a lot of time on that research and decision. Once i made the decision i felt 100% better and at peace. This is why I think your continued conversations with MO will get you to peace with the final decision.


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  • Prairiedog
    Prairiedog Member Posts: 40
    edited July 2018
    Moth, thanks for the links to the calculators. My MO recommended letrozole for me, but I am very concerned about the cognitive effects of AI. Both of my parents had Alzheimer’s and I am determined to do everything I can to avoid that fate. The MO and I discussed the risk/benefits of the hormone therapy and she said it was up to me. According to the calculators, the improvement in reoccurrence rate is not large. That helps me to make my decision.


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  • hapa
    hapa Member Posts: 920
    edited July 2018

    Keep in mind that chemo puts you at risk for other things, like heart failure and leukemia. The risks depend on your chemo regimen. So I'd research the risks of whatever chemo drugs you'd be getting, and unless chemo was going to reduce my risk of recurrence enough to offset those other risks, I wouldn't take it. Breast cancer isn't the only thing you need to worry about in the long run.

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  • maiyen
    maiyen Member Posts: 81
    edited August 2018

    Runrcrb, I can understand your decision with positive nodes. I believe I would do the same in your situation. I think my biopsy path report put me at 98% ER and PR+, but my final surgical report is showing a little lower ER+ and even lower PR+ than before. Although I do not know what the final numbers are since I haven't had my follow-up with the MO yet. Perhaps that info with the additional questions will help me gain some new perspective. You are right, sometimes I think making the decisions about options can be just as hard as going through the actual treatments (at least for me).

    hapa, that's true and I'm not trying to downplay how horrible chemo can be. One of my MO's did state at one point that she's not sure if the toxicity of chemo would outweigh the benefits so I know that's the biggest consideration. Thanks for bringing up those points.

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  • MollyinTO
    MollyinTO Member Posts: 11
    edited August 2018

    just had my lumpectomy and sentinal node biopsy yesterday. The treatment plan is for radiation and hormonal therapy but chemo will be determined following results from the pathology of the removed lump and nodes. Really hoping it won't be necessary!

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  • carmstr835
    carmstr835 Member Posts: 388
    edited August 2018

    maiyen,

    My MO also recommended no chemo. I did a 2nd opinion, that MO suggested chemo. I was much older than you at 61 but 2 positive lymph nodes a KI-67 of +20%. My MO agreed to do TC x4 but then my 2nd opinion came back (he redid all the pathology, surgical and biopsy), I was HER2+ and then my chemo was changed to TCHP x4 more, after 2 TC cycles. My MO did this reluctantly, he took my case to the tumor board who decided against his opinion to do the stronger chemo and add the herceptin and perjeta. My onca scores were 17 & 19 and my mammaprint was Luminal A low. Chemo was not hard for me, I believe it did make me look 10 years older in the year I did it, though. Just finish May 30th. My hair came back very frizzy and fine, but I believe the chemo did it's job. I don't plan to do the anti hormone therapy so my plan is to take every advantage I can that does not impair my cognitive abilities for the next 5-10 years. Someone mentioned exercise and that I believe is a very good deterrent to cancer as well as low sugar and low carbs. I also water fasted 5 days prior to chemo each time to lessen the chemo side effects and it is also a cancer deterrent. I now fast 7 days every 4 weeks.

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  • maiyen
    maiyen Member Posts: 81
    edited August 2018

    MollyinTO, I hope you get whatever answer that you're looking for in regards to chemo. Congrats on getting past surgery and wishing you a smooth recovery!

    carmstr835, thanks for sharing your experience on why you did chemo. I also believe in eating well and exercise and I've always done both, but slack off more than I should so I hope to get more consistent with it. I don't think that it's going to be the only things that prevent a recurrence, but it certainly won't hurt to have a healthier lifestyle.

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  • henry8
    henry8 Member Posts: 3
    edited August 2018

    I too have been told that i dont need chemotherapy. I was first told I was a DCIS then after surgery they found out it was IDC the tumor is small but the weird part is I am ER+and PR- her2 - stage 1a and grade 2 with onca 25. My doctor first said to do chemo but then got a second opinion they said no chemo because of Tailor x. Only problem is it mostly applies to er+and pr+ results. I really dont want to do the chemo but dont want to regreat not doing it down the road!!

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  • maiyen
    maiyen Member Posts: 81
    edited August 2018

    Hi henry8, yes I thought that the Tailorx trial was relevant for only hormone positive patients. Would your PR- make the trial results not applicable for you?

    So, I have a question if anybody is still following this post. One of my MO's just told me that chemo only helps recurrence for about 3-4 years. If a patient forgoes chemo and gets a recurrence in 5 or more years, then he says doing chemo would not have made a difference. I've never heard this before...has anybody else been told this?


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  • moth
    moth Member Posts: 4,800
    edited August 2018

    maiyen - I've not heard that, and in fact the calculators at Predict and LifeMath both indicate that the benefits of chemo can persist beyond 5 years.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    I can see being freaked out at getting diagnosed. I can't see getting freaked out for not getting a chemo recommendation. Chemo is not a miracle cure or an insurance policy. You can kill indiscriminately a bunch of fast growing cells but it is a far cry from getting everything. You got a fast growing cancer that can't be treated with hormone or targeted therapy, heck yes get chemo. Knock as much as you can down and pray for no permanent side effects. Make no mistake we need better treatment.

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  • BT39
    BT39 Member Posts: 34
    edited August 2018

    Hi, I've been told I likely won't need chemo but endocrine therapy. I had a dmx August 15 for widespread DCIS in the left and then found it had grown into a tiny invasive tumor (4mm). Tiny but mighty! Clear node and margins but a lot of aggressive characteristics. I just got that post surgical path report Thursday so will be figuring out next steps over the next few weeks. It does feel weird though, I know what you mean -- it's hard to find the right balance between doing enough (we hope) and not too much (what might not be necessary), and then feeling confident and at peace with those decisions and outcomes! Sending lots of good thoughts your way.

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  • maiyen
    maiyen Member Posts: 81
    edited August 2018

    Hi BT39, it certainly is tough trying to find the right balance. Sorry to hear that your DCIS turned into IDC, but it's good that you seemed to have caught it early. Thanks for the good thoughts...right back at ya!

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  • JoE777
    JoE777 Member Posts: 628
    edited August 2018
    hi maiyan, when my doctor was walking me through my treatment choices he prefaced the discussion with "not over treating". The harsh reality is that there are no guarantees regardless of treatment choices. Once a cancer battle begins it's a lifetime of vigilance balanced with the the gift of today. I agree with almost all that has been shared on this thread. The second reality is that having choices is a double edged sword. We all try to outsmart the disease as we gather as much info as possible but everyone on this site will tell you that every person's diagnosis is unique to them. The bottom line is that doctors are bound to tell you if the efficacy of treatment outweighs the risks or are the risks of treatment will catch up with you down the road. Make sure your doctor answers all the questions that have answers. Some do not. If you don't trust your doctor with good reason find another because you'll spend large chunks of time with your treatment team. I wish I could sweep your fears away but fear will have less power over you as you begin the treatment.Hugs and peace to you.
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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    I have noticed emotional responses when it comes to cancer treatment. I think there exists an attitude that the harsher and more drastic the treatment the better the outcome will be. People seem to want you to do anything you can to fight cancer, overtreatment while it is still early stage. Especially, if you are fairly young and in overall good shape. Looking for the added insurance policy solely based on statistics. Personally, I don't buy into this.

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