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Should I have chemo

everetta
everetta Member Posts: 27
edited September 2021 in Stage I Breast Cancer

I am 68 and in good health. I had my oncotype done twice..the first time came back at 31 and the second time 27. I have a stage 1b lobular carcinoma, 1cm, node negative, grade 2, er+PR-, HER2-. I am BRAC negative. I have been told the benefit of chemo would be 1-3% with a chance of recurrence in 10 years being 10%. I have been trying to figure out what to do. Any suggestions.


Judy

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Comments

  • meow13
    meow13 Member Posts: 1,363
    edited February 2019

    My recommendation is to consider AI drugs. I had an oncodx of 34, age 53, I didn't do recommended chemo but did 4 years AI. I am 7 years NED.

  • wanderweg
    wanderweg Member Posts: 487
    edited February 2019

    Everetta - It’s a really hard decision and of course ultimately, you have to figure out what’s right for you. Interesting about the different oncotype scores. Tumors vary depending on what bit is sampled. So the score is part of it, but so is the “why” of your score. Hormone receptor positivity is on a continuum, so the effectiveness of endocrine therapies depends on how strongly or weakly positive, and on the percentage of cells that are positive. Mine, for instance, was 64% ER+ so the tamoxifen I’m taking has benefit for some of my cells but not others. And on the oncotype, my cancer veered toward the triple negative side on a molecular level. For my situation, chemo made all the sense in the world, even though I was node negative and got clean margins. What does your oncologist say? I ended up consulting with two oncologists and my breast surgeon before deciding to proceed. And remember that after surgery, a subset of people will never get cancer again no matter what they do. It’s just impossible to know which group you’ll fall into when you are looking at the stats.I’d go with expert opinions over what we can tell you here. What’s right for any one person may well be wrong for you.

  • debal
    debal Member Posts: 600
    edited February 2019

    judy, figuring out your plan is one of the most difficult aspects of this experience. A second opinion is always a good idea. Being in good health going into this is to your advantage. It was important to me to make the decision that allowed for the least amount of worry. No matter what we do this disease can resurface. The best decision is the one that feels right to you. When we look at each others signatures here on the boards we need to remember there is soooo much more than what is written that factors into our decisions. Many have other medical conditions to consider. it's not always as cut and dry as it appears. I wish you the best with your decision. Keep us posted!

  • everetta
    everetta Member Posts: 27
    edited February 2019

    Thank you for your helpful reply. I think age also matters. How old were you at time of diagnosis. I too am progesterone negative..is that why you saw yourself as leaning toward triple negative. No one has described it to me that way. I have consulted different doctors and they have all said I was in the grey area--1-4% benefit from chemo (also harmful side effects to doing chemo) so really my choice. They all say either would be reasonable--some saying only 1-2% benefit and is that worth it. I really appreciate talking with you about this. Thank you.

  • wanderweg
    wanderweg Member Posts: 487
    edited February 2019

    For me, my oncotype scored me as triple negative - my oncologists says my cancer is only weakly estrogen driven. On your report, they show a range for each of the factors (ER, PR and HER2) and where you fall on each. Mine were low in all three. And absolutely, age matters. I have a patient who did chemo at 75 and I found myself thinking I wouldn't have. Although, I also know you can't know what you'd do unless you are actually faced with the decision. I was 55 when I was diagnosed, and had only been married for two years. And my younger son (who was 22) told me to make the decision about chemo for myself, but to know that he felt like I still had a lot of time ahead of me and wanted me to do whatever I could to fight it. As did my husband. So those had an impact on me. I think there are so many, many variables that play into this decision that in the end, what any one of us choose is irrelevant for you. Do you know what chemo regimen they are suggesting if you go that route? There are some that are "easier" than others.

  • keepthefaith
    keepthefaith Member Posts: 856
    edited February 2019

    Remember the onco-score is based on the assumption that you will take Tamoxifen for 5 yrs. You may want to ask for a Mamma-print test...? ILC is also harder to detect than IDC....some call it "sneaky". What type of surgery are you having and are you doing rads? Good luck, it's a hard decision. I agree that maybe a second opinion is a good idea.

  • everetta
    everetta Member Posts: 27
    edited February 2019

    Keep the faith, I am wondering the reason for your getting chemo. My doctor has thought that since my tumor was only 1cm and stage 1a, and node negative that there was not a reason for chemo. What was your onctotype score and age..perhaps that is why it was recommended. I did get a mamoprint and it also came back high risk, but I was told that for low clinical wish and high mammoprint score that there was no benefit to chemo and that mamopront if not advised for people with low clinical risk. I am curious the reason chemo was recommended for you. I am curious why certain woman were recommended chemo and not others. Thanks so much for your help.


  • everetta
    everetta Member Posts: 27
    edited February 2019

    Wanderweg,

    Thank you for your response. i have been found both through pathology after lumpectomy as well as on onctotye score to be ER positive and PR negative and HER2 negative. Was your ER also negative? I have talked with a few doctors who feel that with a 27 and 31 and being 68 that chemo is not needed but it sounds like others have been recommended to get chemo. What is your age..since I know the recommendations for woman over 50 and under 50 is different. I too want to have many many years ahead of me, but also worry about the chemo. They were recommending CMF. How did you tolerate the chemo?

  • wanderweg
    wanderweg Member Posts: 487
    edited February 2019

    I was 55 when I was diagnosed and starting chemo. I was ER+ on the pathology and ER- on the oncotype. The oncotype is done to assess how aggressive your particular cancer is. There are women with positive nodes but slow-growing cancers that they don’t recommend chemo for and women with no node involvement and fast-growing cancers they do recommend it for (like me). I did four rounds of taxotere and cytoxan and tolerate it pretty well. It wasn’t fun but I took a week off work with each round and then worked the next two weeks, so it wasn’t as bad as I feared. I did lose my hair, but it’s growing back now. I had no serious lasting side effects just the usual fatigue, GI issues and so on during the chemo

  • everetta
    everetta Member Posts: 27
    edited February 2019

    Hi Wanderweg,

    I am glad to hear that your chemo is done and that you tolerated it well and now you can relax and know that you made the right decisions and have completed your treatments. It is interesting that they are giving you tamoxifen so they must think that you do have some hormonal receptivity. I know my er positive score came back less high on the oncotype scoring then on path report but both were still positive. The PR and HER2 were negative. What was your oncotype score? I know treatments are given for lower oncotype scores for people under 50 and they may figure 55 to be close. I being 68 and far away. I am curious t he range of oncotype scores.

  • everetta
    everetta Member Posts: 27
    edited February 2019

    I am glad you are doing well. I am sorry that the chemo left you with some complications. Chemo can create many complications some temporary and some permanent and your sharing has pointed that out. I hope you continue to do well.

  • wanderweg
    wanderweg Member Posts: 487
    edited February 2019

    Everetta - my oncotype score was 38. My cancer is estrogen drive, just not strongly or uniformly. But enough to make endocrine therapy worth doing for me.

  • everetta
    everetta Member Posts: 27
    edited February 2019

    Thank you for the reply. My highest onctoype score was 31 which is why at 38 it was recommended for you and mine was more in the grey area. Although interesting that my second score was 27. I guess even within the tumor there can be 4 point difference (but usually 1-2) so either way your score would have been higher. I am glad you made the decisions you did. I am still not 100% sure if I will do chemo or not, but I am in a greyer range. You were also younger..I know if I was 50 they would have definitely recommended it for me but at 68 not as definite. Being 55 makes a difference. I think you have made wise decisions and you can relax and enjoy a long life cancer free. Thank you for your kind responses.

  • vlnrph
    vlnrph Member Posts: 474
    edited February 2019

    I agree with the idea to get a second opinion. I iced my fingers and had no long term effects from chemo. I wonder why you had genetic analysis for just BRCA. These days, panel testing is only slightly more expensive. Was there family history?

    Right now is probably your best chance to minimize the chance of recurrence. Whatever your decision, looking back and wishing you had decided differently is not an option.

    With lobular CA, I always expected a tumor to show up in the other breast. Instead, after seven and a half years, I was diagnosed with extensive bone metastases. One estimate predicts that 20-30% of early stage patients will eventually progress. If you can tolerate aromatase inhibition for a decade, that may be a reasonable alternative.

  • everetta
    everetta Member Posts: 27
    edited February 2019

    HI Vinrph,

    Thank you for responding. Lobular is known to be unpredictable and I am sorry about it showing up in your bones. How old were you when you were first diagnosed, (did you have ILC and IDC and which is now in your bones?). I am trying to decide on chemo after a first occurrence but have been told that it is not very responsive to chemo but would be to a Ai and also some have suggested Zometa now for prevention. These decisions are so hard and I agree now is probably the best chance to minimize a recurrence. Were you on Ais initially? I have gotten lots of different opinions (have seen 4 doctors all at major cancer centers and not too much agreement although all think the benefit of chemo would be some but little). I haven't had a discussion on Ais yet but will soon (having radiation now). I did have a BRCA panel done before since my mother died at 64 for ovarian cancer. My sister is BRCA positve and 6 years older then me but never got breast cancer and I who is brca negative did. Did you have an oncotype done and if so what was your score?

    Thanks for sharing. it is helpful to hear from others in the same situation. I hope you will stay healthy and well. There is so much that can now be done.

  • momand2kids
    momand2kids Member Posts: 118
    edited February 2019

    Hi

    I was younger (48) but with some of the same stats. I think my onco score was 26 or 27-- in the end I did 4 rounds of chemo- and I really have not lost a minute's sleep since then- As someone mentioned, there are no guarantees-- but I thought I would do whatever I could at that moment while I was in good health and could tolerate it, which I did. I honestly don't know what I would do if I had been 20 years older. I have had no appreciable side effects--and the Tailorx trial which was released long after I had chemo did reinforce for me that I made the right decision.

    However, the AI drugs are so powerful- like letrozole,arimidex, etc. I just feel that there are so many more things in the arsenal now.... second and third opinions might be in order. I saw something about CMF? I think that is a much "lighter" chemo.

    Best of luck


  • everetta
    everetta Member Posts: 27
    edited February 2019

    HI Momand2 kids,


    Thank you so much for responding. The tailorX study showed that you really did the right thing. For patients under 50 a score of 20-25 gave a 6% difference but for people over the age of 50(post menopausal) there was no benefit of chemo for that same 20-25 group. Above 25 they didn't really test..for those under 50 one could assume the benefit would be even greater then 6%. But for those over 50 the benefit would not be that great--if there was 0 till 25. And the risks of chemo are harder on those that are over 65. I am in a grey area and will definitely try to tolerate the Ais since they are seen to be clearly of value. You definitely did the right thing and the TailorX study has shown that..being 20 years older it is a harder decision since age made a big difference in the effectiveness of chemo. I appreciate your response and wish you continued health.

  • KBeee
    KBeee Member Posts: 695
    edited February 2019

    My mom did CMF years ago and tolerated it very well. Her hair thinned, but did not fall out.

    A second opinion is always a good idea, bu tit is ultimately up to you. I know in the chemo room, most of the women there were older than you.

    There is no right or wrong answer; only the right answer for YOU. Best wishes with whatever you decide.

  • vlnrph
    vlnrph Member Posts: 474
    edited February 2019

    No oncotype for me due to having two tumors of different pathology and micromets in the sentinel node. chemo was a given. I was peri-menopausal, did a couple years on tamoxifen but less than that on AI - quit due to side effects...

    Despite your sister not having BC (yet!), there may be another mutation in the family involved in mom's ovarian CA. It might be worth revisiting the genetic counselor to inquire about broader panel testing.

    IV bisphosphonates are a good option to help prevent bone mets.

  • keepthefaith
    keepthefaith Member Posts: 856
    edited February 2019

    E, my onco-score was 21, age 58 at DX. Considered the intermediate/gray area at that time, before the TailorX trial results came out. My MO somewhat encouraged me to do chemo, but really left it up to me. I tolerated chemo very well, with minor SE's. So far, no long-term SE's.
    After reading, worrying, praying and many sleepless nights, I finally came to the conclusion that it is somewhat of a crap-shoot. In the end, I just followed my gut.

    I do have a family HX; my Mom was DX'd at 60 and again at 83. My half-sister at 27. There are so many factors to consider. You just have to do what you think is best for you. Best wishes.

  • everetta
    everetta Member Posts: 27
    edited February 2019

    Thank you for your note.I am glad you tolerated the chemo well. I think we all should follow our gut and I wish you well and glad to hear you are doing so well. Thank you for your support.


  • everetta
    everetta Member Posts: 27
    edited February 2019

    Thanks so much for your response. I will check out further panels and also medicines to prevent bone mets. I am concerned about ovarian as well as breast cancer risks. Thank you for this helpful advice.


  • everetta
    everetta Member Posts: 27
    edited February 2019

    Kaybee, Thank you. I am glad to hear your mother tolerated her chemo well. I hope the chemo was also helpful to you. It sounds like you had chemo on two different occasions and I hope it was tolerable. Best wishes to you and good health to you.


  • pebblesv
    pebblesv Member Posts: 486
    edited February 2019
    Hi Everetta - my advice is to fully understand the potential side effects from chemo - both short and long term - and whether the risk of those side effects outweighs the benefits for your personal case, or visa versa.


    I have an oncotype of 21 and positive nodes and did not do chemo. There was zero statistical benefit for me - my oncotype score said that tamoxifen alone vs tamoxifen plus chemo would result in the exact same risk of recurrence. So my oncologist said at that point he did not want to “introduce the extra toxicity” to my system for no benefit (his words). I have asthma and there were concerns on long term damage to my lungs and heart from chemo too. I am taking tamoxifen as, while there are potential SEs to that too, my own risk / benefit analysis came out to me feeling it’s worth it to do the hormone therapy, especially since I didn’t do chemo I did do radiation and came through it really well with minimal SEs.


    That said if you decide on chemo, get advice from the ones who have been able to tolerate it very well. Some SEs are permanent so understand the % chance of those occurring and if that’s worth the benefit to you.

    Best of luck on the path you decide! Ultimately we have to make the best decisions for ourselves and feel good about it.
  • everetta
    everetta Member Posts: 27
    edited February 2019

    PebbleV thank you for responding. Wit ha 21 the tailorX study showed no benefit at all for woman under 50. My score of 27 and 31 is above the 25 no benefit. But I know chemo has SE and the chemo would be very limited in the benefit. I had absolutely no side effects from radiation and I hope I will not have any with the medicines since I know they will be recommended.


  • pebblesv
    pebblesv Member Posts: 486
    edited March 2019

    everetta - wow that’s great to hear on Tailor X, I didn’t know that and I know Tailor X is a more recent approach. Thank you for sharing!

    Have you decided for yourself yet? I think it’s up to you to weigh your risk/benefit and go with what feels right. FYI I declined a further axillary node dissection when I came out with 2 positive nodes from the SND as the 40% chance of lymphedema was not worth the risk for me, but agreed to radiation abs the benefit outweighed the 15% risk of lymphedema.

    The question for you is does the benefit outweigh the risk? Or visa versa?

    Chris Wark (the Chris Beat Cancer guy) is someone who declined chemo even though it was recommended. And he’s thriving today.

    Alternatively if you decide to do chemo there is a lot of advice on the boards on how to get through with minimal SEs.

  • everetta
    everetta Member Posts: 27
    edited March 2019

    Hi Pebbles, I realized I wrote this wrong, the tailor X showed now benefit for under 25 for people over 50 (I wrote under 50)--just to clarify the correct information.

  • NeilF
    NeilF Member Posts: 1
    edited August 2019

    Where can you find the statistics? I see the stats on 5 or 10 year survival with different types of cancer but nowhere can I find eg rates increased by x % with chemo vs without or even rates increased by x% using different forms of alternative medicine. You keep hearing or reading about people who have beat cancer with one form of treatment or another, but it is frustrating not to be able to find statistics to back up whether the dangers of chemo outweigh the danger of the cancer recurring after surgery without it.

    I am a caregiver for my common law wife of a couple of years who is dead set against chemo due to the horror stories being spread about the lethal effects of the chemicals without, as far as I can tell, any facts to support it. The problem is, how do I even convince myself, let alone help her make the right choice (it has to be her choice as its her body and her life) when I cannot find any evidence to support the real benefits of chemo vs the risks?

  • moderators
    moderators Posts: 7,684
    edited August 2019

    Hi NeilF,

    Choosing chemotherapy is a very personal decision based on a great number of variables. Here are a few links from our content that you may find helpful:

    chemotherapy

    research news on chemotherapy

    Adding Clinical Risk of Recurrence to Oncotype DX Score Can Help Make Chemotherapy Decisions for Younger Women With Early-Stage Breast Cancer

    Sorry for what you and your wife are going through.

    Warmly, The Mods

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited August 2019

    Neil, there is no single statistic, but dozens of research studies that have evaluated the benefit of chemo in reducing breast cancer metastasis and mortality rates.

    There is no question that chemo increases survival but, as you point out, chemo comes with it's own risks. So whether the risk reduction benefit outweighs the risks depends on the individual diagnosis, and the age and health of the patient.

    What is your wife's diagnosis? What is her hormone status? What is her age? That is all relevant in the decision of chemo or not.

    Some chemo studies:

    https://www.ncbi.nlm.nih.gov/pubmed/9390536

    https://www.ncbi.nlm.nih.gov/pubmed/22152853

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2882502/

    https://www.ncbi.nlm.nih.gov/pubmed/18177773

    https://www.ncbi.nlm.nih.gov/pubmed/16609087

    https://www.ncbi.nlm.nih.gov/pubmed/11441936

    https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)33137-4/fulltext

    https://www.sciencedirect.com/science/article/pii/S0140673605665440