Cancelled Rads, now what?

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    Unfortunately, and this has been something that has been difficult for me too, the information is overwhelming - and not really easy to analyze.  At the end of the day, it just comes down to what path gives us the most piece of mind - we have to go with what makes us most comfortable, and balance that with physicians who want to remove the most risk they can. It all boils down to, "how much risk are you willing to live with? and will constant follow-up reassure you or cause you worry?".  Some of us have more risk tolerance than others, and some see follow-up to be more stressful than reassuring.   

    You are awesome, it is great getting to know you.  

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    I am going to my MO's PA at 11 am for a discussion on all my options.  I have a list of questions yea long.  Hope she is up to it.  

    I wish she was the doc but I did a search last night and MOs are few and far between.  As you may remember, my MO is on maternity leave.

    Tomorrow, I will come back with a decision............................I think. 

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  • Megadotz
    Megadotz Member Posts: 302
    edited June 2012

    infobabe,

    Here's a link from y-me.org that explains the use of the oncotype test to identify DCIS lumpectomy patients for whom radiation might not be needed.

    http://www.y-me.org/about-y-me/expert-corner-blog/new-tool-dcis-breast-cancer-identifies-lower-risk-patients-who-can

     I hope this helps.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

     BLinthedesert

    Thanks for that.  I have already been in touch with the lab in CA.  I don't know if I am going to pursue that.  I will bring it up tomorrow.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2012

    I was never offered the onco type test. Not sure for whom it is offered---but was told it is very, very expensive to have done.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    dogsandjogs 

    It is a little over $4,000.  Your RO or MO can order it.  You may be covered.  

    Medicare does not cover it for DCIS but some insurance companies do.  

    Few doctors are ordering it because it is not standard of care for DCIS.  The lab in CA told me it is standard of care for invasive.  Some on this web site say it is not standard of care but it is in the last stage of trials. For DCIS, a low score indicates no need for radiation.

    If you doctor will order it for you, he/she should ask for a "benefits investigation" in order to see if you are covered by your insurance.  They will not go forward until they get the green light. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    I have returned from my appointment with my MO's PA.  She runs by the MO all the issues, so the doctor is aware.

    I am getting quite a bit of cooperation.  I am not used to that, I am used to be battling headwinds. 

    They agree that I have some wiggle room, timewise, and they do not oppose my refusing rads.  They agree with the consultation with Dr. Michael Lagios.  So, I have the forms from his web site.  My MO's office gave me all the records on my case, about a quarter inch thick.

    I will get this rolling with a phone call this aftenoon.  I will rely on his assessment.  If a mastectomy is advised, I will get it.

    My mind is calming down now that I see a  clearer reasons to do what I must.  We are taking out some of the guessswork. 

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  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited June 2012

    That's great news.  It feels good to have the doctors  cooperate with your decisions.  Let us know how your consultation goes. 

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  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2012

    Infobabe...you got a wealth of info; thats why this forum is so valuable. I had a lumpectomy followed by 33 rads treatments. My ONC and BS both said I needed to have RADS. I do worry about the SEs from rads - the skin cancer and scars on the lungs, etc., but they made if crystal clear that I had to have treatments. Rads werent so bad and now on Arimidex. I have heard that fallout from the Rads doesnt show up for years. Scary though. My BC was Stage 2, Grade 1.  My sister in law has Stage 0 too. She took tamoxifen for 5 years. Does have SEs - weight gain and horrific hot flashes.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    edwards750

    If my cancer were invasive, I would be totally different.  If that were the case right now, I would get the UMX.  I am willing to do what must be done.  

    I just hated the guessing game that was going on, all the what if's.  As I discussed with the PA the problem is that we really know so little but the genome projects should be shedding some light very soon.  She said, actually they are doing that now so treatment can be tailored for the individual patient.  Yes, words I want to hear.  Not available for me now, but others in he future will have a different experience than us.

    I agree, I would be in the cancer treatment mill if there were no web site like this.  Almost scary.  I would never know about Dr. Lagios.  I breath a big sigh of relief.

    If I must have the MX, I got a better read on the surgeons in our community.  So I am easy with that. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    Today I FedEx'ed the forms and Mammogram DVDs to Dr. Lagious in CA.  Now I sit and wait.  I understand that they answer quickly.  Things should really be rolling by next week.  

     Soon I will know what to do, I hope.  I never have had an MRI.  I wonder if that will be a barrier. 

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2012

    Will your insurance pay for Dr. Lagios?  I want to get a second opinion from another oncologist and am not sure if insurance pays for second opinions.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

     dogsandjogs

    I don't really know.  I had to send credit card information for something over $600.  I will submit it to my insurance company but I don't know if they will reimburse.  They really should because most insurance allows second opinions.  

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  • bluepearl
    bluepearl Member Posts: 961
    edited June 2012

    Low grade DCIS and so small, it probably won't go anywhere...93-97% NO recurrance is a pretty darned good prognosis! A lumpectomy would probably be fine with tamoxifen, minus the rads.....they are having some questions about rads for women over 70. Ask-an-expert at John Hopkins would serve you well....it's online under that title.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    bluepearl 

    Thanks.  I will check that out. 

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2012

    Infobabe--I hear wonderful things about Dr. Lagios.  I think he is world-renown.  He interpreted the pathology report for a friend of mine who had DCIS.  I'm only about 30 miles from Stanford.  Good luck.  Second opinions are, I believe, covered by insurance.  Mine was.  That was how I found a wonderful oncologist--second opinion.

    Keep us posted. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    I got a call from Dr. Lagious' office yesterday.  They said it will take about a week to get all the material they need.  Then the Dr. will call me.

    Time marches on.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2012

    Tried the Johns Hopkins link. Asked a question, but it didn't go through for some reason. Maybe they are inundated with questions?

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    dogsandjogs 

    I tried it but I found the questions to be elementary.  There is not much I can ask in a gereral forum like that.  I am getting to the end of my fact finding for my own situation.  I think this site is much better. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited July 2012

    I just heard from Dr. Lagious' office and I am getting the report by email and I will speak to the Doctor in a couple of days.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2012

    Infobabe, interested to hear what he says or if he disagrees with other local docs

    good luck

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  • HealingDreams
    HealingDreams Member Posts: 50
    edited July 2012

    I'm also interested to hear more about your process and your decision.

    I was quite scared of radiation and considered not doing it, but it is the standard of care for the type of tumor I have and my age. My mother, at 77, did both a UMX and rads.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited July 2012

    proudtospin

    HealingDreams

    I am sure Dr. Lagious will disagree with my other doctors.  Standard of care for DCIS, Grade 1 is rads or MX and hormone therapy.  I think I might have more sympathy from my MO.

     I have read volumes since my dx and I have found half of DCIS refused rads.  About 30 years ago because of improved technology, they were seeing more and more DCIS.  Standard of care then was double mx.  It was Dr. Lagious who said whoa, to the over treatment.  I think it is reasonalbe to assume that is where bracheytherapy came from, to avoid so many bad SEs of rads.

    I have received the report and in the end it says I have been appropriately treated and only need follow up mammograms.  No Tomoxifen.  Much of this is becuse of my age.  I speak to the doctor in a couple of days and will report back here.  I have a million questions. 

    Healing dreams, what stage and grade was your mother?  I hope she is well now. 

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited July 2012

    Healing Dreams:  How is your mom doing? I am 76 and declined rads due to worries about the SEs. I have atrial fibrillation and very severe osteoporosis so didn't want to risk it.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited July 2012

    Infobabe: What are going to ask him?  The RO told me what my odds were without rads and was very honest about pointing out the possible SEs.

     When I told my onc he was not happy with the decision, but didn't try to change my mind

    I don't think they should scare you into making a decision. Lay out all the facts, tell you the pros and cons, and then respect your decision.

    A neighbor of mine had a doctor who said she HAD to take Tamoxafin and was very angry when she didn't want to. She said she felt very pressured and really resented it.  I think they are worried about lawsuits---which is understandable I suppose. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited July 2012

    dogsandjogs

    I think the malpractice angle has the most to do with it.  

    Questions like:  

    Do I have wide margins?  I cannot tell from the reports.

    Should I be having MRIs?  How often mammograms?

    Were my mammograms easy to read, in other words will doctors see what they need to see. 

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2012

    I am sitting and waiting on a biopsy set for Monday as my most recent mamo has junk on it, including a lump.  I did the full deal....lumpies, rads and aromasin now.  For 4 years all was great and docs were calling me cured.  I had been doing mamos every 6 months but this last year was released to yearly.  And now new junk, do not know yet if B9 or nasty.  BS had told mw in the beginning that if it returned, it would be nasty.  It was tough to get clear margins and I needed 3 lumpies till told I was clear.  I confess I never considered not doing the recommended treatment but, age has to be a factor.  I was 59 when diagnonsed, now 63.

    trying not to think of the options now if it is nasty but when I read of folks rejecting rads so as to "hold that in reserve" it really makes no sense to me.

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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2012

    Infobabe, 

    I think your question about the margin size is critical. 

    And I agree wholeheartedly with what dogsanddjogs said. You want to know what Dr. Lagios believes your risk of recurrence to be if you proceed without rads, and what it would be if you were to have rads. Another question is why he feels that way; in other words, what are the factors about your diagnosis & pathology that are leading him to suggest that the recurrence risk is low enough that no further treatment is necessary.  It would also be helpful if he can tell you more about the risk of side effects from rads, particularly for someone your age and with any other health concerns you may have. The articles and studies about rads are all so general - you need to understand the risk of rads as it relates to you. 

    If Dr. Lagios gives you an estimate of your recurrence risk with and without rads, that's information you can take back to your other doctors, and particularly your MO, to see if they agree.  If they don't and if they suggest that your recurrence risk without rads is higher than what Dr. Lagios estimates it to be, that begs the question as to why they think that. Where do they disagree? What factors about your diagnosis and pathology are more concerning to them than to Dr. Lagios? 

    That's the information I would want to have to make this decision.

    As for future screening, I agree that understanding how easy your mammos are to read, and asking whether MRIs should be part of the screening regimen are great questions.

    Good luck with the discussion with Dr. Lagios.  I hope that it provides all the answers you want and all the clarity you need. 

    proudtospin, good luck with your biopsy.  Remember, just because you had DCIS last time does not mean that it's DCIS, or anything more serious, this time.  It can still be benign so let's hope for that!

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2012

    thanks Bessie, a survivor pal from my gym asked how I am handling the anxiety, I waved around the gym and said by hanging here~~

    laps help me with stress so doing lots of them

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited July 2012

    proudtospin

    Have you had a mastectomy?  That is what I would have done.  Rads and mastectomy are supposed to have the same outcome.

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