Having bilateral mastectomy & want to refuse radiation after.

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Rkelmarie
Rkelmarie Member Posts: 4
edited March 2019 in Surgery - Before, During, and After

38 years old & I have Invasive Ductal Carcinoma, ER & PR positive, HER2 negative breast cancer. My tumor was 6cm and have 1 lymph node involved.

Because of the size of my tumor it was recommended to do chemo first for my treatment plan. I started chemo in November and I have three more treatments to go. Next will be my surgery in April.

My cancer has responded very well to the chemo and hand exams by my doctor have shown that the tumor has shrunk to almost undetectable by touch alone. I am a candidate for a lumpectomy but the surgeon has made it very clear that due to the location of the tumor and surrounding tissue he would need to take that my breast with most certainly collapse and that radiation could also possibly shrink it and make it even more deformed. I have therefore decided to go with a double mastectomy and reconstruction.

I have not felt right about radiaton form the start. However, if I was going to have just the lumpectomy, I was planning on doing it because it's the best choice to make sure all that cancer is killed. Now that I've decided for a double mastectomy, I don't feel the same way. A lot of the studies of the benefits of radiation with a mastectomy are women who are having the surgery first then possibly chemo and then radiation. There is not a lot of data yet for women in my case who are having the chemo first and the chemo is doing the excellent job of shrinking the tumor & killing all the cancer before surgery.

I obviously want to make the best choice for my health and non-reoccurrence. However I'm not finding a lot of back up where the benefit outweighs the risk of the radiation. I just can't shake this feeling in my gut that it's unnecessary.

Anyone out there feel the same? Or had a masectomy and refused radiation? Happy with the decision or regret? Or if you did have masectomy and radiation - same - happy or regrets

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2019

    Hi Rkelmarie, and welcome to Breastcancer.org,

    We're so very sorry for the reasons that bring you here, but we're really glad you've found us. We know that treatment decisions can be very confusing and overwhelming, so it's good you've found a safe place like our Community to ask your questions, and get answers and support. We're sure others will be by shortly to weigh in with their thoughts and advice, but in the meantime, we wanted to offer you a warm welcome.

    We look forward to hearing more from you soon and supporting you through treatment and beyond!

    --The Mods

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  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited February 2019

    I refused radiation. Due to the positive sentinel node I had axillary lymph node removal a month after finishing chemo. I told the doctors that if pathology doesn't show any other lymph node positive I couldn't see a reason why I should have radiation on the spot where the lymph nodes have just been removed. On the other hand, the BMX pathology came back with no lymphovascular invasion and the tumors were grade 2.

    I honestly think you need to wait until the pathology of the mastectomy comes back and then take the decision. A lot of things can happen between the before and the after. Myself, I went in with the knowledge that I had a 4 cm DCIS tumor with no lymph nodes involved.. The pathology showed something very different, as you can see in my signature.

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  • Rkelmarie
    Rkelmarie Member Posts: 4
    edited February 2019

    Thank you. Waiting for the pathology seems like good compromise to get more info into my tumor/lymph node involvement before making the final decisin

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  • its_real
    its_real Member Posts: 23
    edited March 2019

    HI Rklmarie - we have very similar data - idc, er/pr + heur2- and my tumor was 6+ centimeters. I had pre-surgery chemo, finished 1/25 and second MRI showed substantial shrinkage and could not feel any sizeable lump. Had a lumpectomy on 3/5 and the tumor that was removed was 6 cm - pathology came back with bad margins, 5 of 6 had cancer, so I go for a mastectomy on 3/22. I am only removing one breast. Also the initial biopsy on my lymph node was inconclusive - and 2nd MRI, after chemo, did not show any lymph node issues. In the end 8 nodes were removed and 5 have cancer. I was shocked by how much cancer remained after 16 weeks of chemo. The option to not do radiation is likely off the table because of node involvement. I was hesitant to share this as I did not want to sound negative however I also know that I was very surprised by how much cancer remained. I have heard that each person is unique on this awful journey so sending powerful thoughts your way for different outcomes!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    You also might want to get a second opinion on whether your breast would indeed collapse w lumpectomy. Maybe while you have the chance, talk to another surgeon, to be certain re the mx...

    I am in radiation now, will be done next week, currently sporting a tender glowing red boob so now might not be my greatest moment for an endorsement of rads, but in truth I am not in pain, and it only has been ridiculous level of red for the last couple of days. I am getting proton radiation to minimize the possible damage to my heart (protons can be programmed to stop in the breast and release their energy rather than pass through the body and out the other side). My boob is the same.... not shrunken, not harder; no changes other than the skin/sunburn effect.

    Good luck in your decision. You are smart to think things through ahead.

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  • Elephant
    Elephant Member Posts: 88
    edited March 2019

    I have had 16 rads and have 2 more left of the 5 boosts. Although most people report tenderness and redness, I have not experienced any effects from the rads at all. No changes either to the color or consistency of my breast. I agree that you should get a second opinion so that you are comfortable with your decision.

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  • pingpong1953
    pingpong1953 Member Posts: 362
    edited March 2019

    To make a long story short, because of another medical issue I have I am not a great candidate for radiation. I could have gotten away with a lumpectomy if I could have done the rads, but I didn't want to risk it, so I opted for a mastectomy (with lymph node removal) and chemo, which is considered as good as lumpectomy/rads/chemo. I'm very comfortable with what I did. 

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  • Lezza13
    Lezza13 Member Posts: 957
    edited March 2019

    I would get a second opinion. I had a bilateral mastectomy with no radiation. I had 2 positive lymph nodes but 23 were removed. The radiation doctor said I did not need radiation. Nor did I want it. Keep asking and best of luck

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  • DesertPup
    DesertPup Member Posts: 53
    edited March 2019

    Had my BMX in January, ONCHO score came back good and just required radiation. I'm in week 3 of six and so far so good. Just a little tired some days but not totally floored. Skin is good and using my prescription cream daily. I did research on the radiation risks and nothing freaked me out that bad and I wanted to do the best I could eliminating all my cancer. Waiting for pathology sounds like a good idea. One step at a time ya know ?

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