Do you know you have a choice? Radiation? and more?

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Miles2Go
Miles2Go Member Posts: 120
edited June 2014 in Stage I Breast Cancer

Knowledge is power!  You have choices to make, listen to your friends or family, your doctor(s).  Then make choices for your body, your life! 

Every female breast cancer patient must ask herself some hard questions such as these:

  • What kinds of side effects are you willing to accept? 
  • What will you go through for a small chance to live longer? 

    http://qualitycareguide.stopbreastcancer.org/choice/decision.html

  • Read cure (Cancer Updates, Research & Education; curetoday.com) 2011 Edition CANCER RESOURCE GUIDE written in association with the American Cancer Society (ACS).  Call the ACS at 800.227.2345 for a copy (free or $4.99)

  • Read Dr. Susan B. Love's Breast Book, available at Amazon.com (new or used), "the bible" for information.   My surgeon gave a copy to me.

  • Beware of  "Choices according to the Bible of the Most Recent Clinical Study."   When researching the net for help, review clinical study participant number, who did a study, and specifics; when a study was done and by whom~look for a trend (3 studies with similar results) in results/credibility.

  • Pray, invite people to add you to their prayer groups.  God loves you because you are breathing.  If you do not believe in God, that's okay...remember many people love you. 

  • Understand your Pathology Reporthttp://www.amoena.com/tbcs/NewlyDiagnosed/BeforeSurgery/UnderstandingYourPathologyReport.htm

  • Realize that treatment choices are in your hands.   Ask yourself about practical considerations, your age, your priorities to name just a few.

  • Consider the free web site CaringBridge.com, a private communication web site, to be supported in love and support your friends and relatives in love.  Studies show people who express themselves and receive moral support fair 2 to 4 times better (healthier) than those who do not.
  • Then.  15 years ago I underwent surgery only (lumpectomy) for a different primary bc site; said "no thank you" to radiation following surgery for Ductal Carcinoma In Situ (DCIS) breast cancer, Stage 0 (based on my specific diagnosis and pathology).  10 years later my oncologist told me the survivability difference between those with my specific DCIS diagnosis/pathology between those who chose radiation and those who did not (I did not) was 5%, meaning I fell into the 95% who had no recurrence.  My surgeon mentioned this October she does not recommend radiation for some DCIS depending on the diagnosis/pathology.

  • Now.  IDC Stage 1b again surgery only (lumpectomy) with a suprising discovery, a 1.1mm micrometastases in 1 of 2 lymph nodes. 

  • Radiation was controversial then, as it frequently is

    ~now for micrometastases discovered in sentinal node biopsy pathology.

    The fact is I gambled 15 years ago choosing no radiation, etc.,and "won" with my 1st primary site ~ only to have another primary site discovered 15 years later.  Hey, it's been a thriving 15 years!  I am gambling again, no radiation, etc.

  • Bottom line:  do your research, talk with people you trust, listen to your wisdom ~ then make YOUR healthy choices for you!

 You too have miles to go...

Comments

  • WaveWhisperer
    WaveWhisperer Member Posts: 898
    edited November 2011

    Wow, a lot of good information. Your diagnosis is similar to mine (IDC, stage 1b, micromets in one node, ER+, PR+, HER2-, lumpectomy). You're brave to forego radiation. I've chosen to have it, and I'm currently on the fence about chemo. I'm waiting for the OncotypeDX results to see if that sways me one way or the other.

  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    My OncotypeDX was 17, sneaking under the wire to qualify as "low"~which was another factor in my choice.  What great science!  Eager to see statistics in X years about how this test affected choices and treatment results in years to come.

    Brave?   Thanks for the compliment; however, like I said it's a personal choice and a gamble~good for me, perhaps not everyone.I think you are brave too and I honor your choice for you. 

  • otter
    otter Member Posts: 6,099
    edited November 2011

    Keep in mind that the cutoffs for the categories "low risk", "intermediate risk", and "high risk" for Oncotype DX scores are arbitrary. 

    The relationship between Oncotype DX score and risk of distant recurrence is actually continuous.  (See this page from Genomic Health for details:  http://www.oncotypedx.com/en-US/Breast/ManagedCareOrgs/OncotypeOverview.aspx).

    Although a score of "17" is classified "low risk" and a score of "18" falls in the "intermediate-risk" category, the actual recurrence risks with those scores are almost exactly the same. According to the Genomic Health website (http://www.oncotypedx.com/en-US/Breast/HealthcareProfessional/ReadingReports.aspx), a score of 17 represents a recurrence risk of 11%; a score of 18 represents a recurrence risk of ... 11%! (mathematically identical); a score of 19 is associated with a 12% risk; etc. On the other hand, even though "18" and "30" are both in the "intermediate-risk" category, the risk of recurrence with a score of 18 is 11%, while the risk with a score of 30 is nearly twice as high (20%).

    IMHO, we should be looking at the actual numbers, not just whether or not our scores fall into the "low", "intermediate", or "high" risk categories.  I think everybody here already knows that, but just in case...  I'm all for making choices, but, let's be sure our decisions are based on the best available information, right?

    otter

  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    Hello Otter,  The great benefit of this web site is people like you, who enlighten us in depth beyond general information!  I'm always open to additional information/knowledge, and appreciate yours, thank you! for sharing and the web site you included.

    Although I know my "17" score on the OnnotypeDX is bordering intermediate, I also know 11% recurrence within 5 years is what I'm gambling.  I understand the risk I'm taking. 

    My choice is not for everyone; another's choice is not for me; we simply need to honor each other's choices.  It's knowing there are choices that's importantNamaste, Colorado Morning Glory

  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    The concept of making an informed **choice** is why I'm on my soapbox (not attempting to convince anyone that my choice is the only choice)

    My almost-impossible-to-see curved incision to remove ILC last month is a vast improvement over the "pie-shaped" tissue wedge removed for DCIS in 1995. 

    By the way, my statistically possible 11% recurrence rate in 5 years = an 89% possibility of remaining healthy for 5 years

    I'll be making my treatment (or not) choices in January.

    I am grateful for postings~information and opinions.  Hugs, Colorado Morning Glory

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2011

    The percentage (11%) all of you are putting out there is for metastatic distant recurrence.  As that percentage goes up, the greater advantage to do systemic treatment (e.g. chemo.)

    However, Miles2Go, you are missing a piece of the puzzle.  The Onco Dx score assumes that you will have had either mastectomy or lumpectomy plus radiation (as it also assumes Tamox. or AI therapy) when it gives out those percentages.  Since you state you will not undergo radiation, your risk of LOCAL recurrence will be higher.  I believe the figure is 30% or greater.  Logically, it will raise the distant recurrence percentage also, but I do not know to what degree.

    I'm all for informed choices, so urge you to review your information.
  • LtotheK
    LtotheK Member Posts: 2,095
    edited November 2011

    Yes, and also note the hormonal therapy cuts risk in half.  So, in my case, I can count on my 8% distant met recurrence being 16% without hormonals. 

    It's one person's opinion based on my research, but the numbers seriously substantiate the benefit of radiation in Stage 1+ cancer.  Its side effects, including causing other cancers, is so much lower than the protection it offers.  Also, the studies also seem to indicate it has a role in preventing distant recurrence as well.  Can't find the source on that at the moment, but I did read it in my information journey.

    Also please understand that distant recurrence means Stage IV palliative care.  That is how my oncologist put it.  An 11% chance of becoming Stage IV is nothing to sneeze at.  The medical community is racing to try and figure out how to be less scattershot in treatment, but bottom line, it's about staying away from Stage IV!

    Miles2Go, I really appreciate having the opportunity to discuss this.  I do not intend to be combative!

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited November 2011

    Otter, thank you so much for that insight! 

    Now i understand why my oncologist recommended chemo for me.  My oncotype was 14.  Considered low risk.  However she explained that there is a huge study being conducted right now that calls low risk, something like 9 or below.  They are studying the benefits of chemo and arrimidex with people like me, that have been labeled low risk but they call intermediate.  It was hard for me to understand exactly what she was saying but you just clarified it to me.  She also felt that the oncotype test is too new to bet your life on.  She said it takes decades to know for sure what will happen and if you are in your 70's or up it's ok to skip chemo, but if you are younger, you have many years ahead.  

    I had about 4 drs tell me not to do chemo.  But she made sense to me so I'm doing it.

    Those few days after the infusion are no fun and I doubt my choice.  But it's quite an enemy we're fighting, might as well do our best.  and two weeks out of 3 are not bad at all.  

    Sometimes I think it would be easier not to have a choice.

  • Kaara
    Kaara Member Posts: 3,647
    edited November 2011

    I've just been diagnosed IDC grade 1 stage 1, small 5mm, no results yet on HR & HER info.  Dr. recommended lumpectomy and possible radiation.  Chemo was not mentioned, but I won't do that, and I have reservations about radiation.  I am over 70 and read that it is not necessary with my size tumor which is about size of a pea.  Hopefully no node involvement since it was caught early.

  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    Elimar, you got my attention! regarding the OncotypeDX Test. 

     Resonding to your statement, "The Onco Dx score assumes that you will have had either mastectomy or lumpectomy plus radiation (as it also assumes Tamox. or AI therapy) when it gives out those percentages." What is your source for the assumption, and percentages of disease-free survival (DFS) please?

     From the OxcotypeDX web site.

    How does the Oncotype DX test work?

    RNA, part of the makeup of your cells, is extracted from the tumor sample and then analyzed to determine the level of activity or expression of each of 21 genes. The results of the analysis are then put into a mathematical equation to convert those measures into the Recurrence Score® result.

    This result corresponds to the likelihood of breast cancer returning within 10 years of initial diagnosis (distant recurrence) among women with early stage, estrogen-receptor-positive and lymph-node-negative breast cancer who are taking hormone therapy. The result also provides insight into the amount of benefit the woman may receive from undergoing chemotherapy (commonly used drugs for early-stage breast cancer) in addition to "hormonal therapy."

    It appears the text hormonal therapy actually means anti-hormonal therapy ~ 

    CMG

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited November 2011
    They are talking about distant recurrence as it says above. Radiation reduces local recurrence.
  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2011

    M2Go,  I don't have my original list of bookmarks anymore (due to frying a hard drive in the past year) and the information may have even been given to me by my BS.  The reason I say OncoDx assumes that you will have had lumpectomy + radiation is because that (or a mastectomy w/no rads) is considered the standard of care for Stage I B/C. 

    Anyway, check this out:

    http://www.texasoncology.com/types-of-cancer/breast-cancer/stage-i-breast-cancer/:

    Read thru' the surgery section and the radiation section.  There is a little table that shows the difference between women taking hormonal therapy** who did and did not have radiation, and lists the disease free survival, although they tested for DFS at eight years.

    (**"Hormonal therapy" here they mean Tamox.  Also, while an AI is anti-hormonal in that it stops estrogen production, Tamox., is not exactly anti-.  It merely blocks receptors in some parts of the body (breast tissue) but does not block it in others (uterus.)  So, it's not that much of a misnomer.)

  • otter
    otter Member Posts: 6,099
    edited November 2011

    Miles2Go understands what we're saying -- at least, I hope she does.  IMHO, she's just arguing semantics. 

    It's commonplace here on the BCO Boards to refer to tamoxifen (a "selective estrogen receptor blocker") and the aromatase inhibitors (inhibitors of the enzyme "aromatase", which converts androgens to estrogens) as "hormonal therapy".  Even the editors and writers of the BCO educational pages use the term "hormonal therapy" -- e.g., "Hormonal Therapy," under "Treatment and Side Effects" (http://www.breastcancer.org/treatment/hormonal/).

    It is literally true that tamoxifen and the AI's are not "hormones"; in fact, they fool the body into thinking there is little or no estrogen present, or they actually deplete the estrogen.  So it is technically accurate to call them "anti-hormonal" therapy, leaving the term "hormonal therapy" for those treatments that actually involve administration of hormones (e.g., "estrogen-replacement therapy" or "hormone-replacement therapy").  But that isn't how the terms are generally used in breast cancer treatment.

    As for the source of elimar's statement about the Oncotype DX score "assuming" tamoxifen or AI therapy... that isn't elimar's assumption -- it's one of the the assumptions on which the predictive ability of the Oncotype DX test is based.  The actual source of the information is the published clinical trials in which the Oncotype DX test was developed.  The women in those studies all got 5 years of tamoxifen; so the ability of the Oncotype DX test to predict recurrence risk assumes 5 years of estrogen-blocking therapy as a part of the treatment plan.  Here's a statement from Genomic Health's "Patient/Caregiver" page ( http://www.oncotypedx.com/en-US/Breast/PatientCaregiver/OncoOverview.aspx) that points out the assumption:

    "The Oncotype DX test looks at a group of 21 genes within a woman’s tumor sample—16 cancer genes and 5 control genes—to see how they are expressed, or how active they are. The results of the test are reported as a quantitative Recurrence Score® result, which is a score between 0 and 100 that correlates with the likelihood of a woman’s chances of having her cancer return, and the likelihood that she will benefit from adding chemotherapy to her hormonal therapy."

    The percentages for recurrence risk can also be found on the Genomic Health website, in the "Healthcare Professionals" section.  I haven't read back all the way, but I couldn't find a statement in this thread in which elimar used the phrase, "disease-free survival (DFS)" in reference to the Oncotype DX test.  The Oncotype DX test predicts the "10-year risk of distant recurrence" ... that is, the likelihood of development of metastatic breast cancer ( = "distant recurrence") some time in the 10 years after the definitive surgery.

    I hope this helps.

    otter

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2011

    otter,  I thought Miles2go was asking about the assumption of a person having radiation treatment, so I only answered half her question, didn't I?  Thanks for answering the other half.  Yes, what you wrote about is found right on Genomic Health's website, so I figured she had seen that.

    The radiation assumption falls almost under common knowledge, with it being the standard of care in combination w/lumpectomy surgery.  (Women over 70 or those having pre-existing issues, or those simply refusing it, may not get it, but they are exceptions to the rule.)    Genomic does not assume for the deviation.  So the assumtion is based on current standards, that attain the best outcomes.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited November 2011

    If we are talking semantics I will second Otter's outstanding post, Tamoxifen is not an "anti-hormonal".  It is a hormone modulator.  This is why "hormone therapy" is used as catch-all phrasing for Tamoxifen and the AIs.  There is a huge amount of misperception about how these drugs work and their relationship to one another.  I still find Tamoxifen baffling (and I believe the research indicates scientists aren't entirely sure of all its mechanisms!)

  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    Elimar, SusieQ, Otter, and LtotheK, I am in your debt for the depth of your knowledge and caring, well written, specific information.  There is much to ponder ~ Hugs to all of you, Colorado Morning Glory

  • LtotheK
    LtotheK Member Posts: 2,095
    edited November 2011

    Sometimes, it's about how things are stated.

    Joycek, your statement: Went back to my Onco and she told me that for every 100 women she puts on Arimidex (with my diagnosis) it will only help 1  !!!!!!!!!!!!

    What I think your doctor is saying is that by Cancermath guidelines, for instance, you have about a 1.5% chance of 15 yr distant recurrence.  So, yes, about 1 in 100 would be helped by additional treatment.

    It is true, each person has to make choices, and they are tough.  I am a believer in research, people can do a whole lot between Cancermath, Oncotype, and reading studies.  The studies can be maddening.  I found some arguments against radiation in overall survival, but at the end of the day, the overwhelming evidence was that radiation is a highly effective tool in the BC arsenal.j

    I guess what I'm saying is, I believe in intelligent choices based on research.

  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    Thanks to everyone who participated in answering my question, "Do you know you have a choice?"  This subject did what I hoped it would do ~ generate a discussion and share information.

    If your sentinel node biopsy pathology report includes occult metastases, I encourage you to review

    http://www.nejm.org/doi/full/10.1056/NEJMoa1008108#t=articleDiscussion

    "Khalas" is the Arabic word for finished. Thanks for the ride!  I've learned a lot.  I wish everyone good health and happiness.  Namaste, Colorado Morning Glory (I'm Polish/German, by the way; however, I lived in Saudi Arabia for 3 years)

  • otter
    otter Member Posts: 6,099
    edited November 2011
    [ETA:  Never mind...]
  • msphil
    msphil Member Posts: 1,536
    edited November 2011

    Hello all, I had chemo,rads, Lmast, 5 yrs on tamoxifen(idc,stage 2, 0/3 nodes) and I,ve been a cancer survivor for 17 yrs now(Praise the Lord) with HOPE and POSITIVE thinking and lots of prayers going up for you, I wanted to ALL that I could to give me ALL the chances to be here as long as I can.  God Bless.  msphil

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2012

    I had heard that the Oncotype test was unreliable, so - when my MO recommended the "works" - I agreed to aggressive treatment.  No hesitation.

  • Summer_Girl
    Summer_Girl Member Posts: 69
    edited August 2012

    Miles2go, 

     Your personal choice and respect for others right to choose inspires me.   Some people seem to find peace in very agressive treatment regardless of side effects and some people seem to find peace in a less aggressive, side-effect free choice.    Everyone is right.

  • GrammyB7
    GrammyB7 Member Posts: 15
    edited November 2012

    What was your Oncotype DX result? I am currently waiting for my result. 4 weeks! It seems like a year! If it comes back in the middle range I'm not sure what to choose. Any others in the same boat of which way to go?

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