anyone out there who opted out of radiation?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2016
    One problem with that approach is that you don't know for sure that any recurrence would be confined to a local or regional recurrence. There's no guarantee of that, unfortunately. It could be a distant recurrence; is that something you have considered?

    Yes, radiation can cause issues, including 2ndary cancers. I'm not downplaying the risks but the odds of a radiation induced cancer are pretty small. With any degree of nodal involvement, no matter how small, it seems risky to avoid radiation. Almost all of the statistics establishing the safety of lumpectomy include RT as part of the treatment.

    FWIW - I wasn't happy about the need to do RT and would have skipped it if I could have but I realized that would have been playing with fire.

    There's no doubt that opting for RT is intimidating. I get that. Good luck with your decision making and treatment.
  • Ladybird-dancer
    Ladybird-dancer Member Posts: 167
    edited August 2016

    bethannhg.............what did you choose to do?

    I have been told I have a 20% chance of the c coming back if I do not have radiotherapy, i.e. an 80% chance of it NOT coming back if I don't have rads. Without wanting the bore the pants off anybody to explain why, my specialists are at odds as to whether I should go ahead with it or not.

    Quite what I am supposed to choose is currently beyond me!

    Rads does not kill c stem cells so what flipping use is it anyway?

    I am worried about the side effects - I know some women get away with very little if any side effects. So far I have had every side effect known, with whatever treatment I have undergone....right down to being paralysed for an hour after my last MRI......a side effect NOT known to the medical world, and therefore even tho' it happened, it was not registered. Whoever heard of that????????

    If anyone is out there reading, please reply. I am slim with a BMI of 20 - weighing only 126lbs, tops.

    Thank you

  • Icandoallthings
    Icandoallthings Member Posts: 54
    edited August 2016

    wow! I've ever heard of being paralyzed either- so sorry that happened to you.

    I talked to my radiation onco, and she put a lot of my fears at ease. I think I'm going to go through with it :-)

  • bethanygb1
    bethanygb1 Member Posts: 31
    edited August 2016

    I am in this boat now. Very small (1cm) DCIS diagnosed, had lumpectomy, clear margins, 49 years old, super fit, I play competitive tennis 5 days a week, no BC in family. One child age 13.

    Had SNB, all clear no spreading. My surgeon wants me to see an Oncologist. I just read that my PRE-CANCER MAY have never turned into cancer. I thought it was 100% if they call it pre-cancer. Seems crazy to do rads for something that is not even proven to be cancer or sure it would have turned into cancer. Need advice. I see the onco on Aug 23. I also live overseas so I will need a local opinion there and would have any treatment there. Really frustrated because I thought after the surgery things would be way more clear. I am thinking of refusing the rads.

    Loral I know you posted in 2013 how are you doing? I am in Upper MICH, but from downstate near Detroit.
    Globalgirly how are you doing?

  • Ladybird-dancer
    Ladybird-dancer Member Posts: 167
    edited August 2016

    Icandoallth....Kind of you to reply, and thank you for your sympathy. Yes, it's a problem. I am told to keep my condition under surveillance and yet I cannot have MRIs. I believe it is the dye that screws me up - who knows?

    Good luck with your decision.

    I met a woman the other day who had Triple -ve BC. She had all the treatment and has been left with a 20% chance of it recurring.

    I have had surgery only - however I am taking hormonal treatment for some years (my BC is hormone receptive) - and I have been told I don't need chemo - it would only have a 3% benefit for me, so I said no to that! Yippee! However I have been told that I have a 20% chance of recurrence - like the other woman who cannot have any further treatment - if I don't have rads. The chance of recurrence would be reduced to 7% if I had Rads. But what of the side effects???????? Who knows.

    I think surgeons are wary of it and oncos think it's brilliant. I have no idea what to do.

    BTW the Triple -ve woman had very little, if any, side effects from the rads - she took a shea butter cream in and put it on IMMEDIATELY she came out of the machine and she's fine. She too is slim, but she is only one person.

    BW

  • bethanygb1
    bethanygb1 Member Posts: 31
    edited August 2016

    7% would be an awfully low number to go through the radiation for....you could do the rads and it could come back either way. So tough, nothing is certain is it?

  • DebHen
    DebHen Member Posts: 16
    edited August 2016

    There is a school of thought that those who cancers have "favorable biology" may be able to forego radiation.

    There is a clinical trial, IDEA Study (Individualized Decisions for Endocrine Therapy Alone), that is just starting. It is being initiated by the University of Michigan with multiple centers across the nation participating. It is for post-menopausal women aged 50-69 with a single invasive cancer that has what doctors call "favorable biology" - lumpectomy with Oncotype DX score less than 18, PR/ER+, HER-, clear margins of 2mm, no lymph node involvement and on hormone or endocrine therapy.

    Considering it - waiting for Onco score, but nervous.

  • Icandoallthings
    Icandoallthings Member Posts: 54
    edited August 2016

    boo- that's not me

  • Pecubba
    Pecubba Member Posts: 1
    edited August 2016

    I resisted. Told the doc I really really did not want to be fried up like a piece of bacon. She laughed that I had made it through 2 surgeries and chemo but was afraid of radiation.....then rattled off some statistics and said my chances of recurrence would drop. I bought it. 

    Now, 90 days after, I am developing this AWFUl fibrosis. It's the very first thing I feel when I wake in the morning..... And I have regret. It's my right arm and I'm right handed. It's affecting everything I do. It won't let me forget that my life will never be the same

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2016
    Pec - have you talked w/ your doctor about the radiation fibrosis? A prescription for Vit. E and Trental treatment (plus physical therapy if available) can help tremendously. You don't need to resign yourself to this. (If your RO won't help, talk w/ your BS or MO.)
  • jacksam
    jacksam Member Posts: 9
    edited June 2017

    May I asked for advice about need for radiotherapy. My partner has breast cancer. About 2 years ago she has a small cancerous lump removed. Right breast. She has implants and at same time had lumpectomy with nipple removal and reconstruction (new implants both breasts). She opted for zero treatment after Surgery. Another small lump reoccurred few months ago. Cancerous. She had it removed. On both occasions her lymph modes were negative. She is grade 2. She 35yrs old. Yesterday had her 3rd chemo treatment. One more to go. Yesterday she saw her 2 doctors. The one that did the surgery and the oncologist. Both told her she needs to have the radio treatment after the last chemo. Mentioned if do not then 30% chance reoccurrence. She wants to not have radiotherapy. We live in Thailand and she it at a very good hospital she with good doctors. Treatment is expensive 25 treatments at about $350us a treatment. However cannot put price on health. Any advice would be greatly appreciated. Thank you.

  • peppopat
    peppopat Member Posts: 90
    edited June 2017

    I opted out of rads last time and will, again, this time. The more you try to kill cancer cells, the more they tend to come back as a more aggressive tumor. MY recent pathology report mimics my report from 2011. That was a good thing.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2017

    "I have been told I have a 20% chance of the c coming back if I do not have radiotherapy, i.e. an 80% chance of it NOT coming back if I don't have rads.

    A woman has only a 1 in 8 (12%) chance of developing breast cancer by age 80. Yet here we all are. 20% chance of recurrence is an unacceptable level of risk for me if there’s anything I can do about it.

  • peppopat
    peppopat Member Posts: 90
    edited July 2017

    I opted out and my cancer came back after six years AS A NEW PRIMARY.

    Have an appointment next week to see about doing IORT minimally invasive radiation. I hope I am a good candidate for it. I will report back if I get accepted

    UPDATE. did not qualify for IORT. INsurance issues and the fact I had previous breast cancer disqualified me

  • ganoobi
    ganoobi Member Posts: 12
    edited August 2017

    My onc told me only one in five people get 100% response to chemotherapy. It is a mystery why chemo works on some folks and not others.

  • ganoobi
    ganoobi Member Posts: 12
    edited August 2017

    Please read this: http://www.sciencedirect.com/science/article/pii/S...

    And I wish this website would not allow people to report facts without citations.


  • sweetp6217
    sweetp6217 Member Posts: 365
    edited December 2017

    I'm not sure if I should weigh in but I'm thinking of declining rad treatment come winter. I have 4 sessions of TCHP to go, however, I can turn down the Perjeta due to freakishly frequent D side effects. Following the TCHP, the plan is to get a lumpectomy in breast and lymph nodes to remove clips and anything that needs to go. After surgery, there's a good chance that radiation treatment(s) are in store for me. Of course, my lump, or what's left of it is right over my heart, so that's a concern. I also know a couple of others who are currently going through this type of treatment and they say it's no picnic.

    I can't see the forest for the trees thanks to current side effects that make me want to give up treatment altogether. I'm a bit sick of taking the drugs for the SE. It's not easy to work and deal with this.

    UPDATE (12/14/17): It's been 4 weeks since my last full round of chemo and 1 week since just Herceptin. The last two full rounds came with worse side effects that made me loose a bit too much weight all at once. I also got past all that, got an MRI and it looks as though the lump is gone! The armpit nodes look much better too. They're making it sound like since I opted for chemo before lumpectomy, I have to have radiation after surgery. They're not specifying which kind since we have to wait for test results during surgery. I wonder what they're going to tell me, like the odds of not having rads.

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    ganoobi, amazing article, thank you

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited January 2018

    I have more news. 9 days ago, I had my lumpectomy (post chemo). They took out a tiny bit where the lump was and 2 lymph nodes that absorbed some of the dye. There was no cancer found in the nodes, the lump or the margins. WooT! Yesterday, I saw my surgeon and she told me that my odds of recurrence of cancer (in 10 years?) if I did not get radiation treatments, would be 25 to 30%. Compare that to if I do, 3 to 5%.

    Next Friday, I'll see the rad doctor to see what my choices of treatments are. I'm really hoping to keep working, but I'm naturally concerned about possible side effects. Having experienced fatigue from time to time while on major chemo was not easy to deal with.

  • gigibee
    gigibee Member Posts: 192
    edited January 2018

    sweetpea6217 Ask if your a candidate for prone position radiation, it limits the areas exposed to the breast tissue. I am doing that currently. The fatigue has not been bad but I did not have chemo so I can't say what it would be like coming into it after that.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Hi Sweetpea and I'm glad you got some good news. I worked all through radiation, although like Gigibee I did not have chemo beforehand, so your fatigue may well be higher. Happy to help with more info if I can.

    And for others interested in when you can skip radiation, Johns Hopkins is running a clinical trial to figure that out. I believe it's open to post-menopausal women 50-69 with small, ER+ tumors. It's called the IDEA trial and here's some info:

    https://www.hopkinsmedicine.org/kimmel_cancer_cent...

    https://www.hopkinsmedicine.org/kimmel_cancer_center/research_clinical_trials/clinical_trials/search_results/J1564

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited January 2018

    gigibee: thanks for the idea. I get the feeling that they didn't even try to get my insurance to pay for that (sounds more $). They have me scheduled today (1/25) to get tattoos, etc. for when I lay on my back. The rad doctor didn't even mention anything else. I am extremely disappointed and am considering having come to a halt. Also, when I went in for the consult, he came in, introduced himself and says, "I don't feel good".

    I am going to ask them about prone position radiation before they begin the process. P.S. I hate going to these appointments by myself.

    Edit: I did a little reading and it looks like I may not be eligible for prone. They want to focus more on the lymph nodes (underarm). That area won't work for prone, unfortunately. That could be the reason that he didn't even mention it. Funny that the nurse mentioned it before I saw the doctor. Still, he only said "radiation" but didn't specify what kind (code words, etc.).

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited January 2018

    Looks like my assigned RO only wants supine position rad therapy for meand for six weeks The 2 sentinels and the original mass were negative after chemo, but they want to focus on the lymph nodes and also zap pretty much the entire left breast. They had me practice holding my breath and did some mapping.

    I'm having trouble trying to find studies (online) which show comparisons between patients that get radiation and those that don't. The one that stands out (and doesn't apply to me yet), indicates that elderly BC patients would not benefit as much from rads since most of them (in the study) may have passed due to an unrelated illness or some other way. I know you can take these studies with a grain of salt. I also found what may have been a study (not a major one) where the patients were given 3 weeks of treatment instead of 6 weeks. The article mentioned that further study is needed which is probably why the six week regimen is the default most places. Most of the studies or stats that I've found so far are a bit dated.

    I realize it's possible that surgery doesn't get it all. Also possible it could pop up elsewhere. So, I made an appointment to see a different RO (they asked for all my BC records but I'll have to wait 9 more days to see her.

    I wonder if there's a study for women (in their 50s) who had roughly what I had, got chemo first, then had a lumpectomy (with minimal nodes taken) and didn't get radiation. Or, instead of radiation, endocrine therapy. I was postmenopausal before my uterus was removed (jan 2017, benign).

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