Had surgery, Don't want radiation...

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2014

    Yearly mammogram coming up.  Scared.  I guess it will always be like this.

  • Mariael
    Mariael Member Posts: 7
    edited August 2014


    Hi Fabulousmisty4, I'm in a similar situation. I had a lumpectomy, grade 3, 1.75 cm. My doctor told me she could give me rads without having the organs in the field but then when I was about to get on the table for the simulation, she changed her tune and said that a little of my bones and lung would be in the picture. The research I've done suggests that when you have a high grade DCIS with comedo cells, that radiation is a benefit to reduce recurrence. There are side effects but I think you need to look at your individual situation. If my tumor had been low grade I wouldn't have really considered radiation, but higher grade tumors are more associated with invasive cancers. I'm so sorry about your mother. I lost my parents to cancer also and they suffered. It's an awful disease. I would research and continue to ask a lot of questions. Ultimately you will need to make a decision you are comfortable with. I imagine that your internal guide or instincts will really help. I'm also looking for ways to detox my body of radiation in the event I receive treatment. all the best to you.

     

  • annwill64
    annwill64 Member Posts: 16
    edited October 2017

    Hello I realize your post is years old, but I am in the same situation today. I go to see the dr. today and I am supposed to start radiation probably next week. I don't want to do it!! I don't want to take the drug either!! I am hoping that you respond and tell me that you have had years of cancer free mammograms.

  • annwill64
    annwill64 Member Posts: 16
    edited October 2017

    I am contemplating not doing radiation or endocrine therapy after my lumpectomy that was DCIS, I am wanting to hear how you are today, as I see that post is older. Hoping that you are well!!!

  • blondee327texas
    blondee327texas Member Posts: 23
    edited October 2017

    Thank you so much, I am well and happy to say no to radiation for ever~~~ NEver lookied back. Dr also left the room on me, LOL... we took a vote and went and had lunch, say bye felicia (not sure who she is) LOL

  • Infobabe
    Infobabe Member Posts: 1,083
    edited October 2017

    This is a follow up from my 2012 post. I just received the results of my yearly 3-D mammogram. It is normal as it has been since my lumpectomy in May 2012. I feel I should knock on wood because we never know. But I had only the lumpectomy and no radiation. I had a small low grade DCIS on my left side and was pressured to go for the radiation. I am not advising this for everyone as everyone is different and I would have acted differently if it was invasive.

  • shellz11
    shellz11 Member Posts: 1
    edited November 2017

    I am suppose to start radiation in a couple of weeks, IDC  my nodes clear, i don't want radiation, 

    my family is pushing me to have it. Can anyone please share their experience.

     Thanks, 

  • Annette47
    Annette47 Member Posts: 957
    edited November 2017

    Shellz11 - When you say IDC, do you mean that you were diagnosed with invasive cancer? Because if that is the case, then your situation is very different than the ladies here in the DCIS forum, where the cancer cannot, by definition, spread, and is therefore treated differently in some ways. You might want to repost this in the IDC forum.

    That said, I had 6 weeks of radiation in early 2013 - 5 weeks of regular and 1 week of what they call boosts (radiation directly to the tumor bed). For me, it wasn't bad at all. I had no skin problems at all during the regular treatments, and what felt like a mild sunburn during the boosts, which faded quickly. I did have some swelling in that breast which took a while to subside, as well as some fatigue, but nothing that kept me from my normal routines - I just went to bed a bit earlier. The one noticeable permanent change is that the pigment on my areola faded ... looks a bit weird but is basically harmless and seems to be a known, but rare, side effect. My cancer was on my left side, but they had me do it in the prone position to minimize heart/lung damage. They told me that my heart was not in the field and that there would be minimal lung damage - nothing I would notice but it might turn up on a chest x-ray someday.

    Coming up on 5 years out I can easily say I would do it again if for nothing else than peace of mind.

  • OwMahBoob
    OwMahBoob Member Posts: 7
    edited February 2018

    Hi CherylMarie,

    I'm responding to your post from 9 years ago, so I don't know if you'll read this. But your description sounds identical to mine. So, I'd really like to know how you're doing now, 9 years later. Did you ever end up taking Tamoxifen or any of the AI drugs? Have you had any recurrences of any kind? (I truly hope not.)



  • blondee327texas
    blondee327texas Member Posts: 23
    edited February 2018

    Good Morning, I did not take Tamoxifen or any other meds. ( she wanted me too and I said no) I also refused Radiation and chemo. The oncologist was not too happy with me, but of well. I decided there were too many healthy options out there to try and too much bad info about burns and other health issues arising after radiation and chemo.

    So I was originally diagnosed in 12/10 and had a lumpectomy on 12/22/10. Since I refused treatment, no one followed me (or follows me now for that matter)

    I called my dr after 7 months to get a mammogram and had to demand it. The DCIS was back (or left behind) Not sure which. In any case. I watched every video I could about reconstruction and surgery options. I interviewed 6 doctors and found one I liked and had a Double Mastectomy with DIEP reconstruction on the same day. September 29, 2011. This was in Austin. It went great and I had a revision on 12/22/11 exactly 1 year from the first lumpectomy. This was to clean up the dog ears at the waist and to create nipples. Since I did skin sparing, all tissue is mine. They transplanted blood vessels and tissue up into my chest from the tissue below my waist. I haVe very little scaring on my chest and zero pain or side effects. I also didn't suffer from Lymphodema since no radiation. I also had a Sentinel node BX and all nodes were clear.

    I recently had a mammogram and ultrasound and all is still clear including lymph nodes. Thankful!!!

    BTW, I had a double MX and they found Pagets in the nipple on the opposite side... So I was glad I had both removed. In Texas, Insurance is required to pay for reconstruction and symmetry. My insurance ended up paying 100%. Thank you Jesus for Aetna.

    For my health and wellness, I have been using Plexus products since April 2014. The Plexus Slim helps with energy and brain fog. The probio5 helps with healing the gut which is where about 80% of the immune system resides. IF you can get your gut to work, your body can usually heal itself. The X-Factor Plus is a multi vitamin. I also use Juice Plus which is 30 fruits, veggies, and berries in capsule form. It bridges the gap in my nutrition to make sure I am getting the food my body needs. I also take Turmeric and Vitamin C. I do not take any prescriptions. I rarely use antibiotics and have been well for a long time. I do get tired on occasion and my weight limit on my left is 10 pounds. I get a bit numb in the chest and arm area if I overdo it.

    I guess the bottom line is that you are your best advocate!!!! Do your research. Watch videos. (even if they are gross) This is after all YOUR body!!! Send me a private message if you want to talk. I will give you a call.

    Deidre'



  • blondee327texas
    blondee327texas Member Posts: 23
    edited February 2018

    HI!! I just found all of these comments. How are you doing? Did you opt out of radiation?

  • joyefull
    joyefull Member Posts: 9
    edited February 2018

    I had dcis in 2015. Had surgery and 33 radaition treatments. It was not bad but I did get some burning of skin. Now as of now I have lymphedema I have to see physical therapy 2 times a week and I have radiation fribrosis I've wouldn't say don't do radiation but just remember in future years u can have issues. As IAM. Also expect maybe some pain for quite sometime in breast and nerve endings act up maybe you will b lucky and have nothing. Just expect u could. I would say do the treatment. Now I opted out of meds for 5 years

  • Phoenixwmn
    Phoenixwmn Member Posts: 16
    edited February 2018

    Listen, I don't think you're crazy AT ALL. I'm post-menopausal, 67 yrs old just got my dx and awaiting surgery date, but I durned skippy don't want 6-7 wks of 5 day a wk radation! Women my age who have this same early BC, interductal invasive, can do quite well with a reduced radiation course of three weeks. I can't see myself getting through 6 wks; I'm a very fair-skinned redhead and burn WAY easily, so I cannot even speculate what 6 weeks' of five-days a wk radiation would do to me, never mind the terrifying side effects. I'm seeing the Radiation Oncologist on the 26th and plan to insist upon 3 weeks' duration which I expect to go over like Charlie Browns' kite, but I plan to politely stand my ground. I'm retired from 30 years of Critical Care Nursing; I'm aware that Drs routinely overtreat BC. I also grasp millions of women survive their treatment and do well, but too many go on to have other cancers or recurrence in the same surgical site even WITH the chemo & routine radiation duration. NPR did an article in Oct 2017 about overtreatment of BC. The complexity of BC types makes treatment difficult but I honestly believe I'll do just fine with 3 wks instead of 6 or 7 and there's medical data to back that up. (for women with my type cancer & my age cohort). Don't be fearful of advocating for yourself. DO be informed as you can be, that's so important.

  • Moderators
    Moderators Member Posts: 25,912
    edited February 2018

    We agree, Phoenixwmn, it is an advantage to be informed, and advocate for yourself. You are a strong group

  • OldOakTree
    OldOakTree Member Posts: 173
    edited February 2018

    Hi - I was diagnosed with DCIS in 2003 after having a lumpectomy. After talking with several doctors and endless researching I opted for no further treatment (no rads or tamox or mx). This was based on the size of DCIS (< .5 cm) and margins (smallest was .9 cm). I had a great doctor who had me alternating MRI's with mammo's for 5-6 years. Now I just get the annual mammogram.

    It hasn't been all easy as I constantly worry about it coming back to bite me. It's disheartening to read of others who have been in the same situation and then have a recurrence months or years later. I've come to realize there are no guarantees about anything in life - either good or bad.

    Do your research on your treatment options and be informed. A great resource for me at the time was "Assess Your True Risk of Breat Cancer" by Patricia Kelly and Mel Silverstein's textbook, "Ductal Carcinoma of the Breast." Though both of these were fairly new at the time I was diagnosed they are now 15 or so years old. They still have good info and there is so much more on the web at this time that wasn't available when I was first diagnosed. Learn what you can before making a decision one way or the other.

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