Recurring breast cancer 4 woman who didn't need Chemo.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited December 2016

    Oh yes, the Neulasta shots!!! My late husband was a diabetic and was on dialysis for many years and those blasted shots were forced on him for no reason we could fathom and thank goodness when we changed PC's they were stopped - I had chemo for my BC and never was offered nor did I need a neulasta shot - my blood counts were terrific throughout (must have been the Easy Mac diet I was on - seriously!) - anyway seems to me there was an article in the newspaper a few years back about the shots and dialysis clinic owner in California and some kind of payment scheme (or scam) - I see the ads every night on the newscasts however - gotta love the drug companies!

  • 1040law
    1040law Member Posts: 4
    edited December 2016

    The mammaprint test has specific criteria and if you qualify I think you should demand it. I did, and I came back low risk and refused chemo. My Doctor didn't believe the test and was still insisting on chemo. Don't know if it was the right decision or not as to a recurring cancer as this was just 3 months ago, but I feel good about my decision. Not sure how a test which tests your genes and is over 10 years old in the testing stage cannot be believed.

  • pupmom
    pupmom Member Posts: 5,068
    edited December 2016

    How can anyone respond to you without information about your diagnosis. Please fill out the diagnosis section of your profile, or expect nothing of substance from members, who, BTW, are NOT doctors. Just saying.

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    Yorkie, I like many others have removed the information due to privacy concerns and the use of Outbrain.

    Although I disclose in a comment I no longer have it attached to my profile. I noticed that many other BCO members have removed their info from their profile.

  • M0221
    M0221 Member Posts: 45
    edited December 2016

    MaryToU,

    My gynecologist that delivered my babies comes highly regarded in my community. He told me that he wanted me to get 3 separate opinions from breast surgeons and 3 separate opinions from medical oncologists. I also got 2 opinions from rads oncologists and 2 plastic surgeon opinions.

    Then and only then did I make informed decisions on doctors and recommended treatment. Getting a second or third opinion doesn't mean you are trying to find a doctor that will agree with you. For me it was find the right fit and rapport as well as finding a doctor I had confidence in. I found that the doctors I chose all had progressive thinking and the latest most up to date information on treatment. I am thankful that we live in a country that allows to to choose and seek out individualized care.

    I pray you will find all of your answers. It is such a difficult time while we wait.

    Iit was believed that if I had a mastectomy I would not need rads. That quickly changed when I had a close surgical margin that was sitting on the chest wall. Chemo was because of my pre-menopausal age, high grade tumor, an oncotype score on the high end of intermediate and a strong family history. I went with everything my doctors suggested. Not because I don't have a mind of my own or an opinion, but because I believe in their education and expertise. And I have children that I want to see get married and have children of their own. I am willing to throw everything at this and pray I don't ever have to deal with it again. If I do then I will throw everything at it again.

    Best wishes and many prayers


  • cp418
    cp418 Member Posts: 7,079
    edited December 2016

    BosumBlues - I totally agree with you about displaying our stats which is why I removed mine. I felt someone should be required to be a BCO community member and officially logs on before viewing stats. Otherwise, stats should not be displayed IMO for privacy.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2016

    cp418 - I think this is an important issue. Maybe we need to give it a thread of its own and/or raise the issue with the moderators and the rest of the community?


  • cp418
    cp418 Member Posts: 7,079
    edited December 2016

    Hopeful - I agree so I just contacted moderators about this concern....

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2016

    Two things: Personally, I need to know who I am talking to with a diagnosis and treatment stated. If you don't put your stats, won't talk to you. Don't want to say the wrong thing to the person without a posted diagnosis. Just my opinion. Secondly, the question that started this conversation was about chemo for a Stage 2 diagnosis. With a pharmacy education all I can say is that positive lymph nodes used to automatically trigger chemo, and have for the last 30 years. Even if clear lymph nodes were removed after the affected ones, chemo was standard of care. If you choose not to do standard of care (chemo) you are taking a chance at the craps table. At Stage 2, Grade 2, with hormone positive receptors, you are probably looking at radiation up to 30 treatments, followed by Tamoxifen or an AI. Those are not considered the big guns, just guns that might stop the bc from progressing. With the new results from the SOFT study, ovarian suppression and AI are shown to be superior during the first five years of treatment compared to Tamoxifen. Long term studies need to be conducted to see if this remains true 15 to 20 years down the road.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2016

    I note that it is possible to be Stage II and node-negative ("N0") per the attached summary chart from AJCC (e.g., T2 N0 M0 or T3 N0 M0), and with a suitably low Oncotype Recurrence Score (for Hormone receptor-positive, HER2-negative disease), chemotherapy may not be recommended (in light of all relevant factors). With a Recurrence Score of (<18), such recommendation would be in accordance with clinical consensus guidelines from the NCCN (Version 2.2016) and within the current standard of care.

    Staging summary: https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

    Hoping for the best possible surgical pathology results for MaryToU.

    BarredOwl

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2016

    MaryLou, also, you won't really know anything specific until after your tissue from the mastectomy is evaluated. The biopsy and tissue from mastectomy could be slightly different. Sometimes, the staging and grade will change as pathology reviews all information, and any test areas. Also, most likely no rads for you (depends on what the size of your bc area is) but I have seen women with recurrences on the mast side have radiation.

    From Breast Cancer.org:

    After mastectomy

    Radiation therapy may be recommended after mastectomy to destroy any breast calls that may remain at the mastectomy site. During breast removal, it's difficult to take out every cell of breast tissue, especially the tissue behind the skin in front of the breast or back along the muscle behind the breast. Usually any leftover breast cells are normal. But because it's possible for some breast cancer cells to linger, there is a risk of recurrence in the area where the breast was. Based on your pathology report, your doctor may recommend radiation therapy if you've had a mastectomy.

    These factors are associated with a high risk of recurrence after mastectomy. Radiation may be recommended if any of these factors are present:

    • The cancer is 5 centimeters or larger (the cancer can be 1 lump, a series of lumps, or even microscopic lumps that together are 5 centimeters or larger).
    • The cancer had invaded the lymph channels and blood vessels in the breast.
    • The removed tissue has a positive margin of resection.
    • One or more lymph nodes were involved.
    • The cancer has invaded the skin (with locally advanced or inflammatory breast cancer).

    Based on these risk of recurrence factors, about 20% to 30% of people are considered at high risk of recurrence after mastectomy. Radiation would be recommended to help reduce this risk by up to 70% (for example, a 30% risk may be reduced to just under 10%). Treatment is given to the area where the breast used to be and sometimes to the lymph node regions nearby.

    Some people have a moderate risk of recurrence. They're in the "gray zone" because the cancer has characteristics that increase their risk, but not to a point where the risk is considered high. For example, you might have a 4 centimeter cancer. You and your doctor need to carefully consider your unique situation. Some people in the gray zone want to know they have done everything reasonable to treat the cancer, to avoid or reduce the risk of ever having to deal with it again. Others in the gray zone may decide not to go through with radiation therapy after a discussion with their doctors.

  • Lisey
    Lisey Member Posts: 1,053
    edited January 2017

    Michelle, The SOFT Study actually shows that for women who need chemo, then AIs plus Ovarian suppression is superior. HOWEVER it is NOT better for women who were stage 1 and didn't need chemo. Here's the outcome from the SOFT STUDY scientists:

    We conclude that adding ovarian suppression to tamoxifen did not provide a significant benefit in the overall population of premenopausal women in this trial. However, in the cohort of women who had a sufficient risk of recurrence to warrant adjuvant chemotherapy and who had premenopausal estradiol levels despite chemotherapy, ovarian suppression in addition to tamoxifen reduced the risk of breast-cancer recurrence, as compared with tamoxifen alone. Ovarian suppression combined with an aromatase inhibitor further reduced the risk of recurrence, as compared with tamoxifen-based therapy, in this higher-risk premenopausal cohort.


  • KathyL624
    KathyL624 Member Posts: 217
    edited January 2017

    I would add that the SOFT study also showed a benefit with OS plus an AI for women under 35. The cohort that did just as well with just tamoxifen skewed a bit older.. i think the average age was 46. I was 38 at diagnosis which is why I am choosing the SOFT protocol...I feel I am closer to those under 35 stats even though I did not need chemo.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2017

    Mary

    first, I am so sorry that you are going through this, especially around the holidays. It is so hard to be cheery when all of this is swirling around. I wanted to try to answer your question as I was a stage 2, grade 2 and gray area on the oncotype. I think most people have already mentioned that you unfortunately just have to wait until the pathology comes back and they can do an oncotype test (more maddening waiting!!).

    I am a person who likes to plan ahead and I remember my onc telling me not to get to far ahead of myself (I was talking about meeting with a hairdresser about wigs-who had also suggested I wait until I had more information). My onc really thought my oncotype would be low-- I had a lumpectomy, really clear margins, no nodes.... and then the oncotype came back in the gray range, somewhere in the mid-20's. This was 2009 and I am not sure if mammprint was even an option. My bs told me that the standard of care at that point was chemo/rads. My onc concurred (2 different hosptials). I have such a high regard for both of them and I knew they knew their business. So, we went with 4 rounds of chemo and 35 radiation treatments. I should note, I was the ultimate decision maker-- I could have refused chemo-- and I considered it. But because they both and the tumor board at Mass General recommended chemo, I decided it was worth it for me. I had young children. I also had to think about what decision would let me sleep best at night-- and I have slept pretty soundly since then.

    I think it is important to be informed and it is also important to have faith in your team. When the treatment discussion comes up, it does really make sense to get a second opinion just for your own piece of mind. On the topic of recurrence, well, it really is an issue for all of us because the truth is, no one really knows. You just do the best you can right now with the information and data you have. And hopefully you will feel that you have done all that is right for you so you can get on with living your life and leave this experience in the past. And that does happen. I rarely think of bc--- you are right in the middle of it and it makes perfect sense for you to be raising questions and concerns about treatment. Each step of the way you will have a little more information that will help you piece together the puzzle. We can all offer advice and our experience, but in the end, you will, hopefully along with your team, make a decision that takes into account your diagnosis, your health, age, lifestyle, etc.

    I wish you the best for your surgery and subsequent decisions around treatment. If chemo does get put on the table, there are lots of great threads here about how to get through treatment. Keeping fingers crossed that you can skip it!!!


  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited June 2018

    Regarding ovarian suppression, for those who would like to learn more and to consult the original SOFT and TEXT studies, I have the following bookmarked. The first two ASCO documents are a 2014 Guideline and recent 2016 Update, the latter of which was issued in light of SOFT and TEXT.

    ASCO 2016 Guideline Update: http://ascopubs.org/doi/full/10.1200/JCO.2015.65.9573

    (Free PDF version available under PDF tab; See also, Supplement tab)

    ASCO 2014 Guideline: http://ascopubs.org/doi/full/10.1200/jco.2013.54.2258


    SOFT (Francis):

    Main Page: http://www.nejm.org/doi/full/10.1056/nejmoa1412379#t=article

    PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1412379

    "[R]esults of the planned primary analysis in SOFT comparing adjuvant tamoxifen plus ovarian suppression with tamoxifen alone after a median follow-up of 67 months"

    Supplementary Appendix to Francis: http://www.nejm.org/doi/suppl/10.1056/NEJMoa1412379/suppl_file/nejmoa1412379_appendix.pdf


    TEXT/SOFT (Pagani):

    Main Page: http://www.nejm.org/doi/full/10.1056/nejmoa1404037#t=article

    PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1404037

    "[P]rimary combined analysis of data from TEXT and SOFT comparing adjuvant exemestane plus ovarian suppression with adjuvant tamoxifen plus ovarian suppression after a median follow-up of 68 months"

    Supplementary Appendix to Pagani: http://www.nejm.org/doi/suppl/10.1056/NEJMoa1404037/suppl_file/nejmoa1404037_appendix.pdf


    Re Lobular disease (ILC): BIG 1-98:

    Filho (2015): http://ascopubs.org/doi/full/10.1200/JCO.2015.60.8133

    (Free PDF version under PDF tab; See also, Supplement tab)

    ASCO Post Article re BIG 1-98, "Benefit of Adjuvant Letrozole vs Tamoxifen Is Greater in Lobular Than in Ductal Breast Cancer": http://www.ascopost.com/News/31718


    These documents are not a substitute for current, case-specific, expert professional medical advice. However, they can help to inform discussions with your medical oncologist ("MO"). It is easy to misunderstand such highly technical documents and whether and how their guidance should be applied in the individual case. Guidelines represent snapshots in time, and there may be appropriate exceptions to what is provided for the general case. There may be additional, more recent studies and/or conflicting studies. Therefore, if a publication influences your decision-making in any way, it is essential to confirm your thinking with your MO.

    BarredOwl

    ===========

    [[[EDIT: Since the above results and Guideline Update were published, additional results are now available:

    SOFT/TEXT: Francis et al. (2018), "Tailoring Adjuvant Endocrine Therapy for Premenopausal Breast Cancer"

    Main Page: https://www.nejm.org/doi/full/10.1056/NEJMoa1803164

    PDF version: https://www.nejm.org/doi/pdf/10.1056/NEJMoa1803164

    Supplementary Appendix to Francis (2018): https://www.nejm.org/doi/suppl/10.1056/NEJMoa1803164/suppl_file/nejmoa1803164_appendix.pdf ]]]


  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited January 2017

    Reading back on my earlier comment, I would like to clarify and emphasize my point about the SOFT and TEXT studies. As others have pointed out, for a small co-hort, the evidence is clear that younger pre-menopausal women are having fewer recurrences following the AI and OS protocol. That is GREAT. But, I wish to emphasize that the SOFT and TEXT trials' results needed to be combined before statistical significance could be found DUE TO THE LOW RATE OF RECURRENCES. Below is what I think is ,an understandable review of these landmark combined studies. Keep in mind, as I said earlier, is that the collection of data, whether it be in this particular case, or in the case of the many genetic tests, the researchers will be continually crunching the data to squeeze as much info out of it as possible to ultimately guide treatment.


    Also, keep in mind with the generally good survival rates for ER+, HER 2 - tumors, as I said before, makes finding statstical significance harder....That said, I am pleased that the researchers amended the studies which in combining them achieved statistical significance


    "STATISTICAL ANALYSIS

    The original statistical analysis plans for TEXT and SOFT were to compare disease-free survival between treatment groups within each trial separately, with a planned secondary combined analysis of exemestane plus ovarian suppression versus tamoxifen plus ovarian suppression. However, the patients enrolled in the studies had lower-risk characteristics than had been anticipated in the design assumptions, and the rate of disease-free survival was better than expected. To ensure timely answers to the trial questions, protocol amendments to the analysis plans were adopted in 2011, designating the combined analysis of data from TEXT and SOFT as the primary analysis of exemestane plus ovarian suppression versus tamoxifen plus ovarian suppression. The comparison of tamoxifen plus ovarian suppression versus tamoxifen alone in SOFT, to determine the value of adding ovarian suppression to tamoxifen, has not been analyzed and is not part of the present report...."


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41755...!po=24.0741




  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2017

    Hi VoraciousReader:

    The paper you just quoted to and linked to is an "author manuscript" submitted to NIH, and was published in final form in the New England Journal of Medicine (NEJM) as the article by Pagani "TEXT/SOFT (Pagani)" that I linked to in my prior post.

    BarredOwl

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited January 2017

    b...i just wanted to clarify what the studies confirmed...that said...this combined study is interesting to me because usually studies build on one another...this is the first time that I have seen studies combined, so they can reach statistical significance.... disappointing, was the TailorX study. Many sisters were waiting in hope that those sisters with "intermediate" OncotypeDX scores, specifically those with scores between 18-30 would be safely moved to either the low or high risk category. Unfortunately, or fortunately, depending upon how you look at it,due to the lack of recurrences, the numbers haven't budged yet. Interestingly, since the Mammaprint is now being used, often along side of OncotypeDx, especially when patients come back with OncotypeDx scores in the dreaded intermediate range, it seems that further data from TailorX might be moot. I am really encouraged by the use of so many more genetic tests. Patients are now armed with so much individual data that it is becoming less difficult to make an informed treatment decision.


    More often than not, it seems to me that there are a host of genetic markers being introduced more regularly that are truly impacting how we are treated not just today, but, 5, 10 and 15 years down the road...Stunning.

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