Wanting to chicken out of radiation...

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  • helena1018
    helena1018 Member Posts: 23
    edited February 2010

    I am also reluctant to having radiation, particularly whole breast irradiation since my tumor was was 0.9cm and was located in the left axillary tail.  Logically I am having difficulty with the concept of radiating healthy breast tissue since bilateral MRI showed no disease in either breast, just the small tumor in the axillary tail.  The first radiation oncologist insisted on WBI because it's the standard of care following lumpectomy.  He would not consider partial breast irradiation.  I am getting a second opinion.  I also worry about cardiac and lung toxicity because it's on the left side.   

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  • Raili
    Raili Member Posts: 435
    edited February 2010

    I may be starting radiation in a few weeks, if I don't choose to get a mastectomy instead, and I'm so scared of the potential side effects and dangers of radiation.  I did meet with the radiologist and ask him all kinds of questions, but I'm just not satisfied with his answers.  He assured me radiation will not increase my asthma, but HELLO, there is a whole thread here full of women's stories of how radiation did just that!! 

    What I don't understand is why everyone gets the same 5-7 weeks of radiation treatments, regardless of what type of cancer they have, how big the tumor was, how big the margins are, etc.  Why does none of this matter?  I asked the radiologist but he gave some long, rambly, vague answer that basically amounted to "because that's just the way we do it because it's effective that way."  

    I also don't understand why we must have radiation treatments every weekday but then are allowed to take weekends off.  I understand that this is because the hospital/center is closed on weekends, but what it says to me is that the radiation schedule is centered around the calendar and people's work schedules, not what our bodies actually NEED.  Right??  I mean, if it was SO ESSENTIAL that our bodies receive exactly the same radiation treatment at exactly the same time time every day, we wouldn't be "allowed" to take weekends off.  But since they DO "allow" us to take weekends off (make us, actually), what would be the harm in skipping a Wednesday or a Friday here or there?!  What difference would it REALLY make?  Or how much difference would it make if you just did 3 weeks of radiation instead of 6?  

    I'm worried that I will start radiation, freakout after a couple days or a week or whatever, and not be able to continue.  And then I'll have to decide, am I comfortable with having had what I feel was "enough" radiation, or would I have to go for the mastectomy?  And should I just forego radiation and get the mastectomy NOW, to avoid this whole ordeal?

    I'm not comforted by the radiologist assuring me I might just have slightly burned skin and mild fatigue and that it will all be temporary and I'll be back to normal once radiation's over.  What if it's NOT temporary??  All of these cancer treatments have potentially long-term side effects, which are real, however rare the doctors insist they are... but the problem is, when a breast cancer survivor starts having weird symptoms months or years down the line, it's so easy for the oncologists to insist that surely it has nothing to do with the drugs or radiation.  Surely it must be due to something ELSE.  It seems like there's very little accountability.

    Okay, I'm rambling bigtime, and I think I've covered too many sub-topics for this one thread... sigh.

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  • 4lumps
    4lumps Member Posts: 50
    edited February 2010

    Raili -- I completely agree with u.  I had a Bilateral Mastectomy back in Nov 2009 and after my chemo my dr wants me to do 6 weeks of radiation.  She (Rads dr) basically told me that its going to be a walk in the park.  She assured me that I won't have damaged skin or damage to my implants (I had augmentation b4 my diagnosis and they left the implants in following BMX).  But after researching and speaking with my plastic surgeon, I'm finding out that there is a good chance that I would have to get reconstruction using a flap of skin from another part of my body to fix my breast if I do get radiation.  I feel like treating my stage 1 cancer w/chemo (AC & Taxol) followed by Herceptin and 5yrs Tamoxifen, that hopefully that would be enough.  So I'm opting out of Rads.

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  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    Lotstolivefor...what did you decide...you are only 36...I'm hoping you decided to throw everything you could at this stupid cancer....you do have lots to live for..go for it!  I am 50 and had rads and sailed through..no Se's at all.and I'm alot older than you!  Whatever you decide(d)...I hope you are at peace with it....side effects 30 years down the road I'm sure are uncommon...and won't you be glad to say..30 years down the road..that you did everythng you could?

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  • lotstolivefor
    lotstolivefor Member Posts: 12
    edited February 2010

    Titan,

    I'm doing number 15 today!  Can't believe I'm already this far into it, and it is going just fine.  My skin is barely pink and I'm not experiencing fatigue yet.  And yes, I do feel really good about throwing this at the cancer so it hopefully never, ever comes back again!  I will get through it......Laughing

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2010

    Seriously, the doctors are very specific about their measurements, unlike the 'olden' days. I had radiation on the left side, and don't have any worry about heart damage etc. they are good at what they do. If you have a mascetomy just to get out of radiation, you are going to be faced with a lot of other issues that are NO FUN at all to deal with, and which are also life long. Do everything you can to get rid of the cancer NOW, if the doctors say you need whatever amount of radiation, DO IT,  because if the cancer comes back, the treatments you will be dealing with (and the outcomes) will be a whole lot worse!!

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  • annie1273
    annie1273 Member Posts: 6
    edited February 2010
    Glad to hear you decided to do the radiation. It isn't easy but you need to do all you can to rid yourself of this disease!! I was 40 when I was diagnosed with multifocal IDC. Had a mastectomy with reconstruction-(implant) and then did chemo(which sent me into immediate menopause).  Thought I had done all I could and yet 13 years later the disease reared its ugly head again. It came back in the same breast. The tumor appeared by the implant but luckily I found it.. ..some days I am still in shock-- but having said that -- I only have 2 more of my 28 regular radiation tx and then 5 more boosts and then I am done.  Arimidex will follow. Radiation has gone well-- tho getting marked up each day and seeing my skin get so irritated has been tough!!! but this is an incidious disease and I know I have to do anything I can to stop it from reappearing again.  Just think of the years ahead.  My youngest son was in kindergarten when I was diagnosed and now when this diagnosis came our oldest daughter was expecting our second grandchild .  Do anything you can do to get to those years!!! 
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  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    lotstolivefor....of course you will get through it!....you are almost 1/2 way there....Good luck the rest of the way!

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  • helena1018
    helena1018 Member Posts: 23
    edited February 2010

    Hi!  I consulted a radiation oncologist at Fox Chase Cancer Center (FCCC) after the first radiation oncologist refused to consider anything but whole breast irradiaton.  After examining me and reviewing all of my imaging studies, pathology & Oncotype DX reports, the oncologist at FCCC spent nearly 2 hours with me explaining and comparing the data available for accelerated partial breast irradiation versus whole breast irradiation.  Although the long-term data isn't there yet (clinical trials are in Stage III), the five year data for APBI is comparable to WBI with regard to local recurrence.  I am starting APBI on 2/22/10 - 2 treatments per day, six hours apart, for 5 consecutive days.  I talked them out of the permanent tatoos.  They used a Sharpie and covered with clear stickers to mark the four entry points.  The radiation field is very precise, no radiation to the heart, and only a small sliver (5%) to the left lung.  Total grays is lower too, ~ 37 for APBI with no boosts versus 50-60 for WBI.  I feel confident with my decision and will not look back.  It is important to make an informed decision that is right for you and your particular disease process.  I would suggest discussing all options, pros and cons, before agreeing to a particular course of treatment.  Good luck!! 

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  • 1rarebird
    1rarebird Member Posts: 91
    edited February 2010

    Raili asked why the radiation treatments are given on the weekdays and not the weekend.  The way it was explained to me is that the normal cells that we want to keep need those 2 days of rest so that their RNA can start the repair of the radiation damaged DNA, leading to recovery and not death of the normal cells.  The cancer cells can't repair their damaged DNA so the 2 days rest is of no help to them. Good!!  I guess it dosen't matter which two consecutive days of the week the rest period takes place, but the weekend is handy for most people and that is the way most treatment centers are organized. At least that's the way it works where I am being treated.

    bird

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2010

    helena congrats on getting PBR!!!!!

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  • sac800
    sac800 Member Posts: 2
    edited February 2010

    Someone posted that NAC would detox radiation effects, but I'm not sure what that is....can someone explain?  Any other good detox ideas?

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  • Merilee
    Merilee Member Posts: 3,047
    edited February 2010

    Can anyone help me make sense of rads after Chemo.  Shouldn't the Chemo get the strays?

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2010

    I'm just guessing; but I suppose the place where the cancer originates is the place it is most likely to come back; so rads would be extra insurance. ???

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited February 2010

    Ladies, my two cents worth is that you have to throw everything you can at cancer.  Cancer is sneaky and can hide for a very long time, so we need to try to eradicate it as much as possible the first time.  You don't want to go through this again and wish you had done it the first time around.  I hope that doesn't sound harsh.  I was 39 when I started this journey (almost 40), and I was concerned about getting rads and developing LE, heart damage, etc. but I eventually realized that it was necessary.  Fast forward three years, and I haven't developed LE (I do follow the guidelines on caring for my arm) or heart damage, or anything else that I know of.  I got a little tired during rads and that was about it.  Don't be afraid of radiation!  I hope you can make the right decision for you.

    Bobbie

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  • KQuigley
    KQuigley Member Posts: 17
    edited February 2010

    September 3, 2009 was the last day I felt good.  I had a small cancer as well, did the 33 rounds or radiation, messed around with different meds before settling on Tamoxifin and have to say:

     I regret rushing into treatment.  I wish the doctors had been honest with me and told me of all the side effects and how the moment you agree to surgery and radiaton, there is a chance you will never feel good again.  My cancer was discovered through a mammogram only and I would have taken a "wait and see" attitude.   

     I'm suffering from shortness of breath, ribcage pain and all around breast pain which I attribute to the radiation.  I'm sorry I ever had it done.

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  • precioustime
    precioustime Member Posts: 233
    edited February 2010

    Merilee-  I had neo adjudvant Chemo- BMX surgery and now am almost 1/2 way done with RADS.  After 6 treatments of TAC the PET scan showed no more signs of cancer except for a lymph node in the middle of my chest that shrank 1/4 of it's size.  HOWEVER after surgery, the Pathology report showed 2 tumors less than 1cm and 12 positive lymph nodes out of 18 in the axilla area!!! 

    I do not like going to RADS M-F and laying on a table for 20 minutes and getting skin reactions, HOWEVER - I don't like CANCER even more and do not want to regret in the future that I could of and should of and I am throwing EVERYTHING I CAN at this beast to GO AWAY AND STAY AWAY!!! 

    Loretta

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  • helena1018
    helena1018 Member Posts: 23
    edited February 2010

    Dear Merilee:

    Hi!  Did you have the Oncotype DX Breast Cancer Assay?  My profile is very similar to yours and I was able to forego chemo because by Oncotype DX recurrence score was low (9).  My radiation tech said there are some women who get chemo and radiation at the same time.  Radiation is to prevent local recurrence while chemo, being systemic in nature, is to take care of distant recurrence.  I don't know why chemo wouldn't take care of any microscopic cells that might be in the tumor bed.  I do know that my medical oncologist said I would have needed chemo if my Oncotype Dx score was high, followed by radiation and then 5 years of  hormone therapy (Arimidex).  I had two radiation treatments today, seven hours apart, and will have the same schedule for the next four days and then I'm done.  I did a lot of research and my radiation oncologist agreed that in my case, accelerated partial breast irradiation was suitable instead of the longer course of whole breast irradiation. 

    I would recommend that you ask lots of questions of your medical team and don't do anything until you feel you have gotten all of the information you need to make an informed decision.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2010

    I am so jealous of those of you who got partial. If you get full and have a recurrance your only option is a mast. My poor boobie has been through so much,I hate to think of having to have one.

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  • Merilee
    Merilee Member Posts: 3,047
    edited February 2010

    Precious

    My onco score was 19, I have had a dbl Mx and am currently getting 6 rounds of CMF

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  • helena1018
    helena1018 Member Posts: 23
    edited March 2010

    to Lotstolivfor:  I can only offer my experience with accelerated partial breast irradiation (APBI)which I had last week.  I had four focused beam entry points with each one having a different length of exposure (one for 4 seconds, two at 8 seconds, and one at 10 seconds.  I had 2 treatments per day, six hours apart, for 5 consecutive days - that was the complete course.  I was given Steris gentle moisturizer to apply to the targeted areas of skin after each treatment and again at night.  I am fair-skinned and the only area of mild redness I experienced was at the incision site under my left arm (my tumor was in the axillary tail); I also had some tenderness at that one spot and an area of hardness which is improving.  Today is one week since the last treatment and so far I have had no other side effects.  With the 3D conforming beam APBI which I received, the rad team was able to totally avoid exposure to my heart and only expose 3% of my left lung.

    I was very scared of having radiation treatment, but I can honestly say that for me APBI was not painful and so far (keeping my fingers crossed), the side effects have been quite minimal.  I had to push to get APBI because as a radiation treatment, it only has 5 years of comparative data in the US (longer in Europe and Canada).  Get an opinion (or two) as to whether your particular case is suitable for APBI instead of whole breast irradiation.  

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