Residual disease and treatment

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waytooanxiousmommy
waytooanxiousmommy Member Posts: 144

I had residual disease RCB1 and my oncologist said I don't need more treatment and my prognosis is pretty much the same as someone getting a PCR. I am happy and also a bit scared now that we are doing nothing more to prevent it coming back. I know that you can't control cancer and so I should let go and move on and if it wants to come back then we can deal with it then. I am worried that the reason we are doing nothing is because there is nothing available unlike the drugs for hormone receptor positive women. I do plan on eating healthy, exercising, meditating and taking in support. Any advice on the situation is welcome



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  • Jennifer522
    Jennifer522 Member Posts: 254
    edited June 2018

    How large was your residual?

    My path report did not include RCB score nor info like cellularity to calculate it myself. All I know is it was 7mm and tissue banking (research) didn't want it because it was a lack of definitive mass. MO said my stage now is ypT1b.

    I am on Xeloda now. MO initially said 6 rounds but I am going to push for 8. Then that's all my treatment. I have even looked into clinical trials and the ones I have seen require residual to be 1 cm or more and/or positive lymph nodes. Even Xeloda is new for early stage, so I assume 2 years ago I would have been done with treatment as well.

    Even my friends who got a PCR struggle a bit, it's jumping off a cliff at this point hoping you will survive.

    I still wonder if taking vitamin d, metformin, or anything else can help me. Besides losing weight and exercising.


  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited June 2018

    Hmmm wondering why you are on Xeloda and I am not? My stage is also ypT1b. I do see that your original tumor was slightly larger at 3 cm and mine was 1.9 cm. I had 9mm of residual disease and 10% cellularity, clear lymph nodes and no blood or vascular invasion.

    My oncologist is a triple negative expert and knows all the trials etc. She said it would not be worth it but if I pushed I could have it. I hate cancer because there is no way to ever know what the right decision is. I could skip it and end up with mets and do it and still end up with mets. Basically its a crapshoot and there is no way to know if I will end up regretting not doing it or doing it.

    She did recommend vitamin D and I have lost 25 lbs since diagnosis and am exercising daily and eating well and I don't smoke or drink. I hope I can keep that up as time goes by.

    Do you know why your doctor thought you should have Xeloda when you had so little disease left?

  • Jennifer522
    Jennifer522 Member Posts: 254
    edited June 2018

    I mentioned Xeloda to MO when I was in IV chemo before surgery. He said if I had any residual then I would go on it. I am going to ask my MO when I go in next week about cellularity (and RCB) but I have the actual path report and its not on there. So maybe the lab they use doesn't test for it?

    I had a BMX. 6 nodes taken. Never looked like there was ever any cancer in them. No vascular invasion. Not doing rads, as RO does not recommend for me.

    I never smoked, I could count the number of drinks I have had in the last 8 years, on one hand. All before dx. I have been overweight into the obese range of BMI around 31-32 for 12 years now. I lost weight on AC but gained it back on Taxol. I have to baby my feet on Xeloda. Yesterday they became tender to walk around my house (side effect). So I have decided to start Weight Watchers to clean up and control my calorie intake.

  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited June 2018

    It sounds like we have very similar cases but one of us is on Xeloda and the other is not and this just means that our oncologists have different opinions on this issue. Not being on it makes me nervous but I am trying to let go and be okay with it. I thinker its borderline wether we should be on it and so praying for a good outcome for both of us regardless

  • Flynn
    Flynn Member Posts: 307
    edited June 2018

    I’m in the gray area too. I’m very grateful that I got a good outcome but still stressed that I didn’t get pcr. I actually got two 2nd opinions and both said I could do Xeloda If i insist, but they didn’t see a clear benefit for me. My cellularity was very low. One of the dr’s pointed out that many patients find moving on unnerving regardless of outcome. I would jump on a clinical trial but so far none are good fits for me. With your residual you will probably have same issue but there are a couple that use b/w versus residual as their criteria.

    Good luck!

  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited June 2018

    I think its hard but we just have to let go and live our lives and let whats meant to happen happen. Because of my fear I start trying to control the outcome of my cancer by reading/researching too much etc but at the end of the day I can get the best treatment and modify my lifestyle but I cant control my cancer. I just hope I have the strength and resilience to deal with whatever life sends my way. Love and hugs to all you ladies

  • Jennifer522
    Jennifer522 Member Posts: 254
    edited June 2018

    Waytooanxious, Did your MO give you a disease free survival percentage? I have never asked, we have never talked about it. But today he mentioned it.

    Mine today told me 73% with the 10% Xeloda boost. I thought that was crazy low compared to various article's I have read. I have mainly seen numbers in the mid to upper 80's without Xeolda mentioned. It really was a kick in the gut!

    I know the rational side of me says it's just numbers and nothing I can do to control it. And as the TNBC foundation says, the majority of TNBC's survive and never have a recurrence (so 50+%). It's just so hard to hear.

  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited June 2018

    Jennifer522 73% sounds low according to your stats. My oncologist didn't say but I asked if my survival odds were around 90% and she agreed though I don't know if she was just trying not to alarm me? According to this link

    https://www.practiceupdate.com/content/stage-trump...

    "...findings in this study echo those of an earlier study by investigators at University of Texas M.D. Anderson Cancer Center, Houston, who reported a 5-year DRFS rate of 96% in 125 patients with T1a or 1b, lymph node-negative TNBC untreated with chemotherapy..."

    We are a little different arriving at T1b after chemo (I was T1c prior to chemo) but still it looks like our odds should be similar to the above or maybe just slightly worse. Maybe I am being overly optimistic but I haven't found any numbers that say anything different

  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited June 2018

    Jennifer522 This page says 98% RFS after Neoadvujant chemo. Seems high. Ask your MO why your survival was calculated to be so low?

    http://ascopubs.org/doi/abs/10.1200/jco.2015.33.15_suppl.1092

  • Jennifer522
    Jennifer522 Member Posts: 254
    edited June 2018

    Thanks! I just asked you because we seem like we have similar cases. I will inquire more next time. I was so stunned I couldn't say anything.

    Although he did say he thought I would be just fine, but I wonder do you say that to everyone?

  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited June 2018

    Jennifer522

    I think your doctor got that stat from your initial stage 2 staging as you can see below it is 78.6%. Still I think this is not accurate as you had an excellent response and were downstaged to stage 1. My oncologist is a TNBC expert and she said RCB1 response is equal to getting a PCR and that chemo response is a significant factor when looking at survival

    http://ascopubs.org/doi/abs/10.1200/JCO.2016.34.15_suppl.e12580

    "....388 Charts were reviewed and 224 cases were found to be TNBC with age range of 29 to 88 years. Of the TNBC cases, 41 were stage 0, 72 cases were stage 1, 64 cases were stage 2, 24 cases were stage 3 and 23 cases were stage 4 on presentation. Overall 5 year survival rate was 78.6%. The 5 year survival rates stage wise included 92.7% for stage 0, 95.8% for stage 1, 78.1% for stage 2, 54.2% for stage 3 and 26.1% for stage 4.."

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