Anyone 5 -10 yrs out frm DCIS who didn't choose radiation?

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FrozeninAlaska
FrozeninAlaska Member Posts: 5

I am struggling with decision to choose radiation treatment. I am four lumpectomy surgeries out and now have clean margins, with plastic surgery reconstruction on lumpectomy side (right) and reduction on left to match right. Everything I read says radiation does not increase survival rates; but I also see on community continued DCIS diagnosis after original w/lumpectomies and mx. If radiation can be done only once, it seems it would make more sense to save it for potential later invasive diagnosis. I have read about additional DCIS diagnosis even after initial radiation treatment.

I'm wondering about those who chose no radiation and how their outcomes have been years later?

Many thanks for any comments.

Comments

  • Janet456
    Janet456 Member Posts: 507
    edited April 2018

    I opted out of rads with the blessing of the Oncologist. I kinda thought it's a weapon I'd rather keep up my sleeve if needed in future and my closest margin was 3mm.

    Time will tell and to be honest I think about it less now, but I do remember the angst I went through at the time. It's coming up 6 years now but I still keep my fingers crossed.

    All the best with your decision making, it's not an easy one xx

  • tlfrank
    tlfrank Member Posts: 199
    edited April 2018

    I really struggled with this decision too, but in the end I had the rads.....all the best with this difficult decision.

  • EatPlants
    EatPlants Member Posts: 2
    edited April 2018

    I am struggling with the decision too. I also had great 3, and good clear margins. I’m really leaning towards just taking Femara for 5 years. They wanted me to do both radiation and medication. I’m a couple years post menopausal. Anyone else not do the radiation?

    Thanks,

    Jill

  • ksusan
    ksusan Member Posts: 4,505
    edited April 2018

    I didn't have radiation on my pure DCIS side--it wasn't on offer. I'm 3 years out and doing fine.

  • Egads007
    Egads007 Member Posts: 1,603
    edited April 2018

    I choose to have the rads because my onc rad told me it would reduce my reoccurrence chances down from 30% to 9%. I liked the numbers so I went for it. Everyone is a different case so it does become a matter of personal choice depending on the case information as a whole. It’s still not an easy decision to make. I’m only 4.5 years out, time will tell, but I’m confident I made the right choice for meand hoping those numbers apply to me. I hope you come to a peaceful decision for yourself!

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited April 2018

    I am 10 years out - I did not have radiation! I did however have a bi-lateral mastectomy with reconstruction. I know that this may seem extreme today but my father had breast cancer and died of it 16 years after his dx if Stage !!. I also had a full genetic work up and there was no BRCA connection but they did warm me that since it was my father they really just didn't know where I fell. No one pushed me towards the bi-lateral - it was my choice and at the time many were making that choice. No new problems and if I have another dx of cancer in the future (God forbid) I still have all the radiation left. These are such difficult decisions. I wanted to do "watch and wait" but the docs in the SW (at the time) did not want me to do that - 2 of them called several times pleading with me to do the mastectomy or the lump. but not to leave it alone. It is your decision - I was pushed a bit before I was ready but this is your decision. Good luck!!!


  • FrozeninAlaska
    FrozeninAlaska Member Posts: 5
    edited April 2018

    Thank you for all responses. I am 1.2 mm margin, after 4 surgeries with all Drs saying radiation so I have come to terms and am going to do it. They did say Tamoxifen is an option and it won’t change survival rates. First pathology was ER/PR - but new in Houston was slightly positive.

    What were your side effects from radiation? They are planning to do mine prone position as mine is very near chest wall. Were you tired? I'm traveling backto Houston to stay the month and work remote. Wondering how I should expect to feel. Many thanks for your comments.

  • Egads007
    Egads007 Member Posts: 1,603
    edited April 2018

    Hi Frozen, I was in the supine position. The actual rad time was less than 2 minutes..took longer to park, get in the building, register and undress than the treatment lol! Honestly didn’t have much in the way of side effects, just slight nausea a few hours after treatment...and that only started at the half way point (25 sessions total). I thought I’d got off the hook with skin issues, but my breast started looking sunburnt on the third last session. Yes it was sore but nothing I couldn’t deal with. Some people have real problems, I think it depends on your skin. Mine is sensitive and I burn easy so I guess I lucked out. Only minor peeling when I was done. Tired, yes a little at the end, but I think that was more from the daily slogging back and forth to treatment. All in all it was the easiest of all my treatments

  • momzr
    momzr Member Posts: 111
    edited April 2018

    Frozen - Here is my DCIS 'story' - I had my diagnosis of DCIS back in July, 2008 (close to ten years ago now) -- left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision. Mine was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy. I have not had any additional treatment besides my excisional biopsy/surgical excision in July '08. At follow up appt. a medical oncologist spoke with me and told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation. I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a 'pass'. Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS. In summer of 2011 microcalc's were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions. In July 2012 a small grouping of microcalc's (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign. They put a 'marker' in at the time of stereo biopsy and I have had follow up mamm's since then which thankfully continue to be 'stable' in that area. I am at the point now, almost ten years since first lumpectomy/surgical excision, of being back to annual checks. My DCIS was a very, very tiny area, but I did not choose to do any further treatment.

  • FrozeninAlaska
    FrozeninAlaska Member Posts: 5
    edited April 2018

    Hello Momrz,

    Thank you so much for taking the time to respond to my question! i am happy to hear the positive results after such a long period of time! Not all stories are as good as yours!

    Minda

  • hopedreams
    hopedreams Member Posts: 85
    edited April 2018

    Hi all..Well here I am back here again..NEVER EVER thought that this would happen... I am just 6 yrs from my mastectomy in 2011.. I had dcis in left breast & stage 0.. I chose a mastectomy..with reconst.. I was told that I didn't need chemo or rads after that. I DIDNT WANT A LUMPECTOMY..DUE TO NEEDING RADS AFTER THAT... Well I went for my yearly mammo & ultrasound on Friday April 20 2018. soo many pics.I said to myself uh oh..!! Then the ultrasound.. Radiologist came into room & did it herself..& said I'm sorry but I have 2 areas THAT ARE SUSPICIOUS.!!!! SHE THINKS MAYBE DCIS AGAIN.. ??? & WANTS ME TO HAVE STEREOTACTIC CORE BIOPSY.. I ALMOST FAINTED IN SHOCK !! SINCE I WAS A BREAST CANCER SURVIVOR.*** I DIDN'T SEE MY BREAST SURGEON ON THAT DAY..WAS MY FIRST TIME SEEING A NURSE PRACTITIONER.. MY PLAN IS TO SPEAK TO MY BREAST SURGEON & GET HER TAKE ON THIS.. SO NOW I AM A NERVOUS WRECK WONDERING WHAT THE HECK I HAVE NOW IN MY " GOOD BOOB" BY THE WAY..I ALSO SURVIVED 3 OTHER CANCERS THAT WERE NOT RELATED TO THE B.C... THE LATEST CANCER DX IN DEC. 2017 WAS MELANOMA STAGE 1 A..HAD SURGERY & ALL IS WELL WITH THAT FOR NOW..ANY THOUGHTS ARE WELCOME..THANKS.. HOPEDREAMS. XO

  • Mntx
    Mntx Member Posts: 18
    edited April 2018

    hi frozen

    R u at MDA? I too am traveling to Houston. Lumpectomy with SNB and reconstruction in less than 2 weeks. Your situation has some similarities. I have been told I need radiation. Who was ur surgeon?

  • FrozeninAlaska
    FrozeninAlaska Member Posts: 5
    edited April 2018

    Yes, Dr DeSnyder General Surgeon and Dr Summer for plastic surgeon. Just did my first appt for radiation today of the series. All are wonderful.

    Couple notes from my experience. Stay at the Jesse jones rotary house if you are able - at least for surgery time and post op.

    Bring scissors so you have something to cut the meliplex with. It is for after surgery.

    I ordered two sports type bras that zip - worked great.

    If you have compression bra from biopsy bring that too



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