Stage 1, grade 1 and pre-menopausal

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Comments

  • Annicemd
    Annicemd Member Posts: 292
    edited June 2014

    Hi all,

    Have to agree with VR's comments.

    Definitive evidence for how best to manage er+ early stage BC is just not yet available. Therefore with the help of our oncologists and MOs we have to find a treatment plan that fits best with our own individual circumstances and complies with logic and existing evidence.

    Some women can't take tamoxifen for a number of reasons and choose no additional treatment or ovarian suppression as an alternative. Some go for chemo tamoxifen plus OS. Now we have suggestions that aromatase inhibitors may be an alternative to tamoxifen for younger women  (suggestive rather than conclusive data). 

    The treatment approach will be different for younger women who perhaps want to consider pregnancy compared to women who are very near natural menopause and have completed their family. Younger women with ER+ disease are generally given more aggressive treatment because they have so much estrogen around that feeds the cancer.

    There is not a one size fits all treatment and we have to find a treatment regimen that we are happy with and stick with it! I suspect there will always be more questions than answers for this disease :(

    Wish I had more answers to share 😘

    Annice x

  • lojo21
    lojo21 Member Posts: 39
    edited June 2014

    I just had my first MO appt since I finished rads. When I asked about 10 yrs of tamoxifen, he said probably, but then did mention the possibility of switching to an AI if I went through menopause. He also mentioned the ovarian suppression option but said it was so new he wasn't sure what the indications would be for who would be a candidate for that vs staying on tamox only. I got the impression he is happy to wait a year or two and see how the recommendations shake out. A

  • adamash67
    adamash67 Member Posts: 6
    edited June 2014

    Hello to everyone, I'm new to joining in here. I have been reading this site for months since my diagnosis and am very grateful for the sharing of information.

    I was diagnosed in January and had a lumpectomy and sentinel node biopsy in February. I am lucky as we got it early, it was small and there was none found in the lymph nodes. I decided against chemo as I was advised the risks outweighed the benefit, it was a small non aggressive tumour. I am 46 and had not yet reached menopause but because of a lifetime of endometriosis my oncologist didn't recommend Tamoxifin so I am on Zoladex injections.

    I have to say I had an easier time with surgery and radiation than the Zoladex. Initially lots of headaches and up to 20 hot flashes a day, I was fatigued after radiation and then being woken 6 times a night with flashes etc. So now my doctor has me on Effexor which I started this week. So far the flashes have halved and I am hoping in time will lessen even more. I have been thinking seriously about having my ovaries removed, not sure if the symptoms will be as bad or easier, but I wouldn't have to have 2 more years of injections and would go straight to aromatose inhibitors. If I didn't reach menopause at the end of 2 years of Zoldaex, I would be 48, would I have to have more injections until I did reach menopause? 

    My mother also has bilateral breast cancer and is seeing the genetic counsellor today for BRCA testing. I already know if I were to test positive I will definitely have the ovaries removed but in the meantime am just waiting to see how the cards fall.

    It is a very stressful ride and being a Mum makes me more determined to get it right so that I am here for them. Trying to deal with it mentally is harder for me than the physical side but am trying to remain positive and thankful that it was found early.   


     

  • Sunshineinky
    Sunshineinky Member Posts: 61
    edited June 2014

    Welcome Adamash! There is so much information and I'm sure others will be along that perhaps in a treatment similar to yours.  I really wanted OS along with my tamoxifen however my MO didn't think it was necessary.  I'm going to discuss it with her again in August.  My gyno said there was no reason to not go ahead and remove my ovaries.  He wants me to have it done.  I'm really torn over the decision as well so currently I'm just researching and praying.  I think it's been a whirlwind since diagnosis and I'm still in treatment so I'm not making any major decisions at the moment. I'm not rational enough lol.  

  • Stenokim
    Stenokim Member Posts: 76
    edited June 2014

    adamash, sorry you've had to join, but this site has been so helpful for me and I'm sure it will be for you as well. Our cancers seem similar. I turned 48 in March and I was told I have an old lady cancer, non aggressive, though they think I had it for a couple years, that's why it made it into one lymph node. I didn't do chemo either, same thing told to me about risk v. Benefit.  My oncotype test came back that I'd get a one percent benefit from chemo.   I am on tamoxifen with no side effects, thank God.  I just found out yesterday, however, that my MO quit practicing.  I wasn't notified by anyone in their office, just found out accidentally through someone else, so now I have to find a new MO.  I need to find out what kind of tests, if any, I need to have done for check ups. I read of some people getting uterine ultrasound to check for problems caused by tamoxifen.  I was told nothing about that.  I don't know if MO would do that or my primary doc.  I hope you can stay positive and go on and enjoy life.  That's what I'm trying to do.  I had BC, they removed it and I'm moving on, that's my plan!  Good luck to you!

  • Sunshineinky
    Sunshineinky Member Posts: 61
    edited June 2014

    Stenokim, my gyno did a baseline transvaginal ultrasound.  I mentioned it after it was suggested here and he had no problems doing it.  Good luck finding your new MO! 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    Ad... I'm over 4 years away from shutting down my ovaries and my body is still simmering.... I bought a frogg togg chilly sport cloth that I wear around my neck and it really, really, really makes me more comfortable.  I give them as gifts to friends and tell them to pay it forward!  I hope you get some relief soon!

  • Stenokim
    Stenokim Member Posts: 76
    edited June 2014

    thanks, sunshine, for the info.  I'll check with my regular doc about it. I don't have an obgyn anymore, my regular internist did the breast exam and Pap smears, so I guess I'll ask her about it.  I've been on tamoxifen for five months with no periods.  I hope that's not too long for a baseline.  

  • Annicemd
    Annicemd Member Posts: 292
    edited June 2014

    adamash, sorry you are here with us.

    Ovary removal will result in similar symptoms to zoladex.

    The Effexor will not have reached maximum benefit yet so things should continue to get better.

    After 2 years of zoladex the ovaries can sometimes start working again but every woman is different so that can't really be predicted...

  • rozem
    rozem Member Posts: 749
    edited June 2014

    hi all - reposted from the triple positive thread (thought this might be useful for you guys)

    so I went to see my MO today and we had a LONG discussion about hormone therapy - here are the goods:

    at the ASCO in Chicago the results of the "don't know the name" study (sorry cant remember) compared -

    pre-meno women on tamox plus ova suppression AND pre-meno women on an AI plus ova suppression - results were that the women on ova suppression plus an AI did better - statistically enough for her to change me to Femara

    now the results of SOFT and TEXT wont be out until the end of the year but she said one can "guess" that tamox alone wont do as well but she cannot say for sure.  Plus if you are really young the implications of shutting down your estrogen might be worse then the risk of recurrence.  I think if you are high risk then that should be weighed in to the decision for sure

    VR - you are the expert in reading the data, I think I interpreted what she said correctly

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    rozem!   Great job!  On the previous page of this thread, I gave the link to the study presented at ASCO.  It is referring to, like you mention to the TEXT and SOFT trials.  The results will be formally released later this year. Preliminary results tell us that an AI and ovarian suppression leads to LESS recurrence than Tamoxifen and ovarian suppression. We don't know yet if it leads to better survival.  My oncologist said that it might take more years to definitively know because Stage I Grade 1 sisters have better survival numbers to begin with.  And, it takes longer for us to recur, so that might push back the time it takes for statistically significant data to appear.  

    I think the news that you are telling us is that the recurrence numbers are good enough for a healthy discussion of ovarian suppression because the AI appears to reduce recurrence by a significant amount.

  • adamash67
    adamash67 Member Posts: 6
    edited June 2014

    Thankyou all for your welcome.

    Annicemd that's what I had read on some of the endometriosis threads I have been on. It's really hard to know when I may have gone into menopause naturally if I wasn't on Zoladex as my mother had a hysterectomy before 40 and had her ovaries removed so I can't compare. I had a hysterectomy at 39 but the ovaries were left in and after being diagnosed I was tested for hormone levels and I still have plenty.

    Sunshine I'm not sure what an MO means is that Medical Oncologist? I see you ladies are from USA and I'm from Australia. When I spoke to my oncologist he didn't recommend ovary removal but my regular doctor thought I should speak to my gyno about it. Now I'm on the Effexor and I'm managing the menopause symptoms more I am less keen to have the surgery. But if the BRCA testing comes back positive then they are coming out!

    Vr thanks for the tip on cooling down, I will look into that. I'm finding I am taking some time to understand the information, my brain seems slow at the moment, but this cancer business is very confusing. So many options, so many different treatments, its great that they don't have a one stop fix but it sure makes it hard figuring out whether you're doing the right one.

    My mother had her testing yesterday so we have to wait 4-6 weeks for her results. I'm not sure if they wait for that before following up with mine, I'll have to chase that up.

  • rozem
    rozem Member Posts: 749
    edited June 2014

    VR. How do we find out the percentage difference in the two protocols. Curious 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    rozem!!!! Again, great question!  However, you are not going to like my answer.  Earlier it was reported that while both trials enrolled enough patients so that results would be stastically significant, it appeared that there wouldn't be enough "events"  over the time period chosen. So, instead, both studies were combined to power the statistical significance if over a period of time one existed rather than just look at the "event".....:(  What both trials were looking for was the following:  "Specific Aims: Evaluate the role of aromatase inhibitors and the addition of OFS to T in this population." 

    Ongoing Trials 2 - Endocrine Therapy

                         SOFT and TEXT: Trials of tamoxifen and exemestane with and without ovarian function suppression for premenopausal women with                     hormone receptor-positive early breast cancer                  

    L Zickl,                      P Francis,                      G Fleming,                      O Pagani,                      B Walley,                      KN Price,                      RD Gelber,                      MM Regan,                      International Breast Cancer Study Group, and                      North American Breast Cancer Group

    Background: The SOFT and TEXT randomized phase 3 trials address two primary questions for endocrine treatment of premenopausal women                     with hormone receptor-positive breast cancer. 1) In combination with ovarian function suppression (OFS), does an aromatase                     inhibitor (exemestane, E) improve outcome compared with tamoxifen (T)? 2) Does addition of OFS to T improve outcome compared                     with T alone?                  

    Trial Designs: SOFT compares 5y of T to OFS+T or OFS+E. OFS can be GnRH analog (triptorelin) x 5y, oophorectomy or ovarian irradiation. Median age was 43y (11% <35y); 35% had N+ disease. Prior neo/adjuvant chemotherapy                     (CT) given in 53%.                  

                                              TEXT compares 5y of OFS+T to OFS+E. Patients were enrolled prior to CT (if planned). Median age was 43y (9% <35y); 48% had                     N+ disease. Adjuvant CT was planned in 60%.                  

                                              Major Eligibility Criteria                    

    • – Premenopausal, confirmed by estradiol levels
    • – ERimage10% and/or PgRimage10%
    • – Invasive early breast cancer

    Specific Aims: Evaluate the role of aromatase inhibitors and the addition of OFS to T in this population.                  

    Statistical Methods (amended 2011): The primary analysis will be intention-to-treat of all randomized patients. The primary endpoint, invasive disease-free survival                     (DFS), is defined as time from randomization to invasive local, regional, or distant relapse, contralateral breast cancer,                     appearance of a second non-breast malignancy, or death. DFS will be compared using a 2-sided stratified logrank test with                     an overall experiment-wise alpha level equal to at most 0.05.                  

                                              In the original protocol, anticipated 5y DFS was 67% with T alone, 74% with OFS+T, and 79.8% with OFS+E, and required a total                     of 396 DFS events in TEXT and 783 DFS events in SOFT to reach 80% power. Because the enrolled population had more favorable                     characteristics and the event rates were lower than anticipated (2%/yr vs 8%/yr), the revised analysis plan is ‘time-driven’                      rather than ‘event-driven.’                  

    The comparison of OFS+E to OFS+T across both trials (n = 4717) is planned at median follow-up (MFU) >5y. The estimated power                     to detect a 20%, 25%, or 30% reduction in the hazard with OFS+E vs OFS+T is 63%, 84%, and 95%, respectively.                  

                                              The comparison of OFS+T to T alone is planned at 5y MFU (SOFT, n=2045). The estimated power to detect a 20%, 25%, 30%, or                     33.5% reduction in the hazard is 34%, 52%, 69%, and 80%, respectively.                  

    Accruals

                                              SOFT Target: 3000; Final: 3066                  

                                              TEXT Target: 2639; Final: 2672                  

                                              Enrollment 2003–2011; primary analyses expected late 2013/early 2014.                  

    Related Research

                                              Quality of Life (QL) component evaluates QL, menopausal symptoms and sexual impairment.                  

                                              TEXT Translational Research investigates patient and tumor features that may contribute to treatment effectiveness and side                     effects.                  

                                              TEXT-Bone investigates changes in bone mineral density and the role of serial serum markers of bone remodeling as predictors                     of bone side effects.                  

                                              Co-SOFT evaluates changes in cognitive function during the first year.                  

                                              SOFT-EST evaluates estrogen levels during the first 4y of GnRH analogue and whether there is a suboptimally estrogen-suppressed                     subgroup.                  

                                              North American Pharmacogenetics study investigates whether genetic variations that affect T and E metabolism influence efficacy

    ____________________________________________________________________________________________________

     

     

    Here's the amendment to the studies and WHY they were combined:

     

    Breast. 2013 Dec;22(6):1094-100. doi: 10.1016/j.breast.2013.08.009. Epub  2013 Oct 2.

    Adjuvant treatment of premenopausal women with endocrine-responsive early breast cancer: design of the TEXT and SOFT trials.

    Regan MM1, Pagani O, Fleming GF, Walley BA, Price KN, Rabaglio M, Maibach R, Ruepp B, Coates AS, Goldhirsch A, Colleoni M, Gelber RD, Francis PA; International Breast Cancer Study; GroupSOFT and TEXT Investigators.

    Author information 

    • 1International Breast Cancer Study Group Statistical Center, Dana-Farber Cancer Institute, Boston, MA, USA; Harvard Medical School, Boston, MA, USA. Electronic address: mregan@jimmy.harvard.edu.

    Abstract

    OBJECTIVES:

    In 2003 the International Breast Cancer Study Group (IBCSG) initiated the TEXT and SOFT randomized phase III trials to answer two questions concerning adjuvant treatment for premenopausal women with endocrine-responsive early breast cancer: 1-What is the role of aromatase inhibitors (AI) for women treated with ovarian function suppression (OFS)? 2-What is the role of OFS for women who remain premenopausal and are treated with tamoxifen?

    METHODS:

    TEXT randomized patients to receive exemestane or tamoxifen with OFS. SOFT randomized patients to receive exemestane with OFS, tamoxifen with OFS, or tamoxifen alone. Treatment was for 5 years from randomization.

    RESULTS:

    TEXT and SOFT successfully met their enrollment goals in 2011. The 5738 enrolled women had lower-risk disease and lower observed disease-free survival (DFS) event rates than anticipated. Consequently, 7 and 13 additional years of follow-up for TEXT and SOFT, respectively, were required to reach the targeted DFS events (median follow-up about 10.5 and 15 years). To provide timely answers, protocol amendments in 2011 specified analyses based on chronological time and median follow-up. To assess the AI question, exemestane + OFS versus tamoxifen + OFS, a combined analysis of TEXT and SOFT became the primary analysis (n = 4717). The OFS question became the primary analysis from SOFT, assessing the unique comparison of tamoxifen + OFS versus tamoxifen alone (n = 2045). The first reports are anticipated in mid- and late-2014.

    CONCLUSIONS:

    We present the original designs of TEXT and SOFT and adaptations to ensure timely answers to two questions concerning optimal adjuvant endocrine treatment for premenopausal women with endocrine-responsive breast cancer. Trial Registration TEXT: Clinicaltrials.govNCT00066703 SOFT: Clinicaltrials.govNCT00066690.

    Copyright © 2013 Elsevier Ltd. All rights reserved.

    KEYWORDS:

    Adjuvant therapy; Early breast cancer; Endocrine-responsive; Premenopausal; Trial design

    PMID:
    24095609
    [PubMed - in process]
    PMCID:
    PMC3855346
    [Available on 2014/12/1]

    _______________________________________________________________________________________________________

     

     

    Now....the answer to your question...what was the DIFFERENCE in both protocols....So far, we've found out that an AI with OS works better than Tamoxifen with OS to REDUCE RECURRENCE.  We haven't found out yet if it increased survival nor have we found out the role of ovarian suppression and survival as of yet over not doing ovarian suppression:

    .

    After a median follow-up of 68 months, disease-free survival at 5 years was 91.1% in the exemestane–ovarian suppression group and 87.3% in the tamoxifen–ovarian suppression group (hazard ratio for disease recurrence, second invasive cancer, or death, 0.72; 95% confidence interval [CI], 0.60 to 0.85; P<0.001). The rate of freedom from breast cancer at 5 years was 92.8% in the exemestane–ovarian suppression group, as compared with 88.8% in the tamoxifen–ovarian suppression group (hazard ratio for recurrence, 0.66; 95% CI, 0.55 to 0.80; P<0.001). With 194 deaths (4.1% of the patients), overall survival did not differ significantly between the two groups (hazard ratio for death in the exemestane–ovarian suppression group, 1.14; 95% CI, 0.86 to 1.51; P=0.37). Selected adverse events of grade 3 or 4 were reported for 30.6% of the patients in the exemestane–ovarian suppression group and 29.4% of those in the tamoxifen–ovarian suppression group, with profiles similar to those for postmenopausal women.

    Full Text of Results...

    Conclusions

    In premenopausal women with hormone-receptor–positive early breast cancer, adjuvant treatment with exemestane plus ovarian suppression, as compared with tamoxifen plus ovarian suppression, significantly reduced recurrence. (Funded by Pfizer and others; TEXT and SOFT ClinicalTrials.gov numbers, NCT00066703 and NCT00066690, respectively.)

     

     


  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014


    So...in summary...We know that the combination TEXT and SOFT trials tell us there is a statistical difference in recurrence:

    "After a median follow-up of 68 months, disease-free survival at 5 years was 91.1% in the exemestane–ovarian suppression group and 87.3% in the tamoxifen–ovarian suppression group (hazard ratio for disease recurrence, second invasive cancer, or death, 0.72; 95% confidence interval [CI], 0.60 to 0.85; P<0.001). The rate of freedom from breast cancer at 5 years was 92.8% in the exemestane–ovarian suppression group, as compared with 88.8% in the tamoxifen–ovarian suppression group (hazard ratio for recurrence, 0.66; 95% CI, 0.55 to 0.80; P<0.001)."

     

    However, what we don't know yet is does that improve long term outcomes of survival.  Nor do we know yet whether or not adding Ovarian Suppression to an AI or Tamoxifen improves survival by a statistically significant measure. 

     

  • rozem
    rozem Member Posts: 749
    edited June 2014

    VR - thanks for the summary.  Since some women getting an AI are already post meno (as opposed to putting them in menopause) then would that be a control group as well or do they lump women with functioning ovaries but post memo in this group (not chemically or surgically made post meno)

    if you have better disease free survival doesn't that mean that OS is better too?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    rozem, all of the patients offered to participate in the TEXT or SOFT trials were PREmenopausal to begin with.   I was invited to join the SOFT trial but declined.  Now, an interesting point that you make is are the patients who eventually become menopausal also lumped into the groups?  I know I would have become menopausal during the 5 years, so I would assume all of the groups included patients like me.  I hope we will be able to see that data in the future... 

    But your second question is easier to answer.  Does future recurrences translate into more deaths?  No.  And that question speaks to the issue of endpoints!  The most important endpoint in all kinds of studies is death.  But death takes a long time to happen, so researchers choose soft endpoints.  The DH and I were recently talking with one of his physicians who is an MD/Ph.D. and is the chief of Medical Genetics at one of our country's leading pediatric hospitals.  We got around to talking about statins and endpoints.  Nowhere in medicine is the issue of  endpoints more controversial than when we study statins and cholesterol numbers and their relationship to heart disease and cardiac death.  Without getting knee high deep into the discussion, let's just say that one can't assume that having a soft endpoint can ever be substituted for a hard endpoint.  With breast cancer, we know many patients have recurrences and survive because treatments have gotten so much better.  So, with the TEXT and SOFT trials, we don't know yet if OS helps long term survival.  Furthermore, it's not a type of treatment that doesn't come without its own issues.  So, while we now know that an AI  and OS works slightly better than Tamoxifen with OS with respect to recurrences, we don't know how much better they are when it comes to survival, nor do we know if both are much better than Tamoxifen alone.

  • rozem
    rozem Member Posts: 749
    edited June 2014

    VR AND OTHERS

    for all those who are interested in the on-going debate on AI vs TAMOX and OVA SUPRESSION.  I just got this response from my second opinion MO at Dana Farber on my question on whether I should stay on zoladex and change to an AI based on recent results from the ASCO saying there is a survival advantage in pre-menopausal women:

    "we have been discussing this data with patients as an option but not insisting on it.  We have taken the stance of wanting to wait until December when the tamoxifen alone arm of the SOFT trial will be presented....the exception is in very high risk patients in whom we have started offering this option (AI plus ova suppression) in a more pro-active fashion"

  • Sunshineinky
    Sunshineinky Member Posts: 61
    edited June 2014

    Rozem thanks for sharing this! I do intend to speak to my MO at my next appointment about it.  

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    Rozem..thanks for the update!  December's SABCS should be very interesting.  BTW...the biostaticians at Farber are the ones collecting the North America SOFT and TEXT data. I think what the folks at Farber are recommending makes sense with respect to high risk patients.  When I was offered o/s , my MO said I could do either Tam or an AI.  He didn't think it mattered much which one I selected because I was low risk of recurrence and the absolute benefit of taking an AI over Tamoxifen was an absolute difference of 1 or 2%.  However, had I been at greater risk, I think he would have recommended an AI.  So, the newest data coming out of ASCO doesn't surprise me.  I think we all want to know in absolute terms how much advantage there is in o/s versus not doing it...Right now for those of us at low risk, it just seems like we have more and more choices ahead....

  • RainDew
    RainDew Member Posts: 228
    edited June 2014

    thanks Rozem!

    I am new to this thread (hi everyone!). My MO said almost verbatim what DF said - wait till Dec to take a call.

    Thanks everyone for you ongoing input and inspiration.

    Rain

  • rozem
    rozem Member Posts: 749
    edited June 2014

    i know you ladies aren't in this boat (wish i wasn't either!) but being her2 and grade 3 even stg 2 no nodes puts me at high risk but was the her2 driving the tumor or the ER (i was 95% ER)  so back for the shots I go ( ugh) until December

  • Annicemd
    Annicemd Member Posts: 292
    edited June 2014

    Thanks Rosem, 

    The DF opinion is logical and makes good sense, they sound like very balanced experts and have thought it through v thoroughly. Thanks for sharing that with us all

    Annice

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014


    Well, here we are. Trials offered to determine whether or not patients among early stage bc benefit from becoming menopausal through other means than using chemotherapy, and no arm offered to see if the lowest-risk HER2 positive patients might benefit from the same trials.

    Yet supposedly trastuzumab gives even the lowest-risk HER2 positive patients an edge???

    Unfortunately, because the highest-risk HER2 positive patients of all (metastatic patients) saw some benefit by including chemotherapy with trastuzumab, all the rest of the HER2 positive patients are "assumed" to need chemo in addition to the reduction in risk by using trastuzumab.

    That is "science" and the "scientific process". It seems "taking the risk" of including an arm for the earliest stage HER2 positive patients (who could be given trastuzumab without chemo) wouldn't be "ethical". So instead of starting out with an arm for HER2 positive patients with negative nodes and tumors under 1 cm to find out whether or not they should take on the added risks of chemotherapy, there will be no clear scientific basis for "offering" them the chemotherapy that helped "metastatic" patients.

    It is obvious how eagerly other bc patients are awaiting the results. It will be wonderful for them to benefit from them. It is terribly sad that the lowest-risk HER2-positive patients are being treated like lepers instead of being included in these trials.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    AA....Anyone who has been reading this thread is aware of your opinion.  It is obvious that you will take every and any opportunity to express your unabating, concrete opinion regarding this issue.  I strongly suggest you get counseling before the end of the year when the preliminary results of SOFT and TEXT are announced.  I respect your right to have the opinion that you have.  However, your obvious pain speaks louder than your opinion.  

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014

    I do post often about it, but without apology. It is a different point of view, posted about a complicated subject that is hard to grasp for most, especially with most being herded in panic to do whatever seems most "appropriate" and expected, by the unwieldy process that is really all that is easily available for consideration in the haste to deal with cancer. Mine is only one opinion.

    I also realize that the thread is very pointedly limited to discussion about the matters involving stage 1 grade 1 patients, to discuss excitedly lots of terribly expensive research that is limited to benefitting stage 1 grade 1 patients with any results that might provide the least toxic treatments.

    At the same time, a thread limited to discussion of Stage 1 grade 3 patients, who have never been provided significant research done to answer the question of whether or not they too would stand to benefit from the same less toxic treatments that are being done currently by the terribly expensive clinical trial process,  have no such access to trials. Instead, patients in that group at least risk are advised to "consider" toxic therapy -- AS IF the nonexistent research about the question was available to them -- and is limited to the very arbitrarily designated "low-risk" group who are not HER2 positive AND lo-risk.

    I am of the belief that out of sheer compassion, it is important not to let other more privileged groups of patients blindly stampede toward progress limited to their own benefit, not understanding or realizing that such discrimination by the professionally prominent treatment process is denying others that same opportunity.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    AA.  You do not need to apologize for your opinion.  Many of us who read your pleading for more clinical trials for lower risk HER 2 POSITIVE sisters are aware of your concern.  However, your FEELINGS attached to your opinion continues to be raw.  It is those feelings that I am concerned about and I think you need professional help to help put those feelings into a proper perspective. Comparing those sisters to lepers?  I won't argue with you about the comparison.  I will just urge you to seek professional help so you can begin emotional healing.  

    I often wonder if making these tired appeals on some level makes you feel better.  If so, I think they help no one and I truly, in my hearts of heart, believe they only make your journey more painful.  

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014


    VR, no need to worry. I'm simply persistent in pointing out the problems with the present professionallly authorized system when it comes to gray areas of investigation. Diagnosis is a time of confusion, and questions that are very logical get shunted aside to fit the existing diagnostic system that is in place, with its "cookie cutter" approach.

    What pain still exists for me personally 12 years later, is due to the 12 years of failure of the diagnostic system to provide any reasonable avenue of investigation for those who are least likely to benefit from toxic therapy and who have the benefit of trastuzumab, to help them make the decisions about whether or not to do therapy that was only proven to be helpful to other HER2 positive patients whose tumors had metastasized. They are not "crazy" to question it -- especially when it would have been quite simple and inexpensive to simply add a HER2 positive arm to each of the terribly expensive trials that are now such a terrific source of possibility for so many OTHERS. It is just a naturally blind spot for those who stand to benefit, such as yourself -- because it is so easy to assume that "the research has or is being done by the professionals".

     

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014

    AA....your persistence and justifications are part of your failure to find closure from your experience.  Furthermore, I am far from blind from understanding all of our expectations and failures of the medical profession.  Spin it as you wish AA, however there are more constructive ways to sooth your pain.

  • rozem
    rozem Member Posts: 749
    edited June 2014

    AA - I don't think there is a "lowest risk her2 positive" the reason Herceptin was opened to all stages, including stage one is that the relapse rate was very high (sorry I forgot the percentages) even in stage 1 gals.  Now I'm in Canada, so public healthcare,  and I can guarantee that the government would not be offering Herceptin to early stage patients if there was no clear benefit - its way too expensive.  Now I understand your frustration, I do, I deal with my own collateral damage every day as do many many women on this site who have gone through toxic treatments and body altering surgeries.  I am of the opinion, where her2 is concerned, that the treatments are necessary because you are dealing with a different beast altogether.  The girls on this thread have a grade 1 stage 1 tumor - chances are pretty good that they were cured by surgery alone - we are in a different boat. 

    VR  the ladies in the latest study comparing ova sup + AI or Tamox  - was this there only adjuvant treatment ? or did some do adjuvant chemo as well - ?