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41 Years Old, No Kids, Diagnosed DCIS, Bilateral Mastectomy with Expanders - Boston, MA

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My doctor found some small lumps in my right...

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Stormyseas
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My doctor found some small lumps in my right breast during a routine pap. After a mammogram and an ultrasound I was scheduled for a biopsy. After biopsy I was diagnosed with DCIS in the right breast. I opted for a double mastectomy because cancer runs in my family. I've seen and heard about enough bad experiences with lumpectomies etc. and knew it was the right call to take them both off. Why anyone would want to risk a chance of recurrence when they have already been diagnosed with cancer in the breast no matter what stage boggles my mind. This only seems to create a more likely chance of recommendation for chemo and radiation in the future. No thanks.
I have read a few stories on here about pain in the breasts. I've been having pain in my right breast sporadically for the last four years. After googling it I assumed it was from wearing wire bra's and not a sign of cancer because it is not listed as a symptom. BS. If you have pain get it checked out.
On July 27th, about one month after my mammogram I had my mastectomy. My breasts were a large B cup before surgery. My PS recommended expanders because my breasts were small to start with and I wouldn't have enough skin for immediate implants, unless I was OK with very small boobs. I figured if I was going through this hopefully I can get a nice new rack out of it... Going for a C cup. I'm about five weeks in to getting fills at this point. I think after two more I will be done for a while, then I wait three months for the skin to become comfortably stretched. Surgery in January it looks like at this point. Generally this whole process has went very well. No real issues with pain etc. Of course the first month was a trip but after that it got way better.
Now here is the real reason I'm on here:
I want to pick the brains of other women who may possibly be in or have had a similar situation. My lymph nodes were negative, I lost the right nipple because I had so much of the DCIS in the right breast. (That side hurt more and longer than the left after surgery and was more recessed FYI) The pathology report came back saying I also had DCIS in the left breast. Like I said, take them both off. It also came back that they had found "a few cancerous cells" as well. Not a lot but it worries them. So they sent these cells to a specialty clinic in California to find out specifically how aggressive these cells are.
Now, the oncologists already want to prescribe ten years of tamoxifen, even if these cells are chill. Depending on the results of these cells, possibly chemo. When I asked them if they have any way of knowing if some of these cells had escaped into my body they said no. So basically they want to treat me as though they have. For ten years. And possibly with chemo. When I told them I want to fight it naturally they pretty much looked at me like they feel sorry for me, like poor girl, you're going to die because you're so dumb. I also asked if they had any way to tell if the tamoxifen is working. No they can't. Basically the only way they will know if I develop cancer somewhere else in the body is if I develop symptoms. then they can test me. And technically if I don't have any new symptoms in five years I am "cured" even though in actuality I could very well be forming cancer somewhere else because maybe I'm in not taking care of myself because I think this pill is going to save me. And maybe I don't have any more of those cells left in me in the first place, right?? They don't know. I'm so frustrated and confused and angry at our medical system. I'm doing everything I can via researching online and books about natural cures. I've been eating all the right things, taking the right supplements, acupuncture, lymphatic massage, and about to do muscle testing to find out my deficiencies. Why would I trust these doctors over my own self and what I know is right. My body did not fight off this disease because of inflammation, I'm sure of that. I've been a heavy drinker for the past six years. When I told my oncologist I had quit drinking altogether she actually said it was not going to help. The nerve of this woman I really wanted to slap her. I'm not a doctor. I have respect for what they do and I know they save lives. But not all cancer should be treated the same. And why aren't they giving us a book about diet and exercise. I mean isn't that just common sense....why am I funny for bringing it up??
I don't want to be their next Guinea Pig. It's not right to treat something when they are not sure it's even there. Does anyone out there feel like me?? My friends are all worried and feel like I should just take the pills. I feel really alone and scared. I'm trying to keep my mental state up because I know it's important for the fight but I'm feeling so down about it all. I find out the results of the new test in two days...I'll keep you updated.

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Eric C. Liao, MD, PhD

Eric C. Liao, MD, PhD

Board Certified Plastic Surgeon

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Replies (39)

September 23, 2015
I'm 37 and had a similar diagnosis. I opted for the bilateral mastectomy with immediate reconstruction and had that surgery on 6/17/15. I just had my implant exchange surgery last Thursday. Trust me, I know how you feel about making the "right" decision as far as adjuvant treatment. The oncologist I was referred to basically made it sound like I was writing my own death certificate if I didn't follow his advice. I had DCIS and he recommended chemo AND ten years of tamoxifen. That apparently is the "standard plan of care" for that diagnosis, especially considering my age. I did my research and I talked to several other health professionals. My gyn even suggested a hysterectomy on top of the ten years of tamoxifen. It was all too much!!!! I will say that all of the oncologists that I consulted DID recommend the tamoxifen, stating that, if I tried it and didn't like it, then no harm no foul...stop taking it. Maybe it wasn't presented to you quite that way. I'm the type of person who can barely tolerate a Tylenol! Plus, what's the benefit of me taking it for a few months and stopping versus not at all? On top of all of that, the women who I do know who took it ended up quitting or having to get off due to complications. So I declined the tamoxifen and I haven't looked back. We came up with a treatment plan that we were both satisfied with. It's a hard decision to have to make, but do your research, pray and meditate on it, and make the best decision for YOU. And once you make the decision, don't look back or second guess yourself. Be blessed and happy healing!
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September 24, 2015
Thank you!! I know that I need to trust myself in this. It's all been so overwhelming that it's easy to get confused and waiver. I know there are like minded people like us out there who are paying attention. It already makes me feel better to know you have made the same decision.... I really have no one to talk to who has had breast cancer and did not go the western way of chemo and tamoxifen. Even the healthiest hippiest woman I know decided to... Thanks again and blessings right back at you!!!!
September 24, 2015
I had bilateral total mastectomies last summer for DCIS bilateral. No chemo, no radiation, no hormonal treatment because I still have a uterus. Dx at age 47. I had grade 3 dcis in both, extensive in the left side. I had a ton of breast pain, and was told it was all due to fibrocystic breasts. My gut told me otherwise. All my mammograms were normal! I begged for the ultrasound, followed my breast MRI. MRI was by far the most accurate test and showed everything. DCIS is a non invasive cancer, so that is why my docs said no need for chemo or rads. Also 7 lymph nodes total removed, all negative for CA. I was told the hormonal treatments can cause uterine cancer.
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September 25, 2015
Everyone's treatments are so different, it's interesting. 7 lymph nodes? Yikes!
My oncologists are really trying to sell the tamoxifen on me because of my (young?) age. They say uterine cancer is rare and only happens to women in menopause. Women have been using this drug forever and I want to say they've figured out the side effects pretty well at this point. I just don't want something unnatural messing with my chemistry. I can mess with my chemistry naturally thankyouverymuch. I consider myself (and you it looks like) very lucky to be able to even consider fighting recurrence naturally. The cells that they found in pathology that they tested were so small it turns out that they couldn't even test them. So they are not worried about them. No recommendation for chemo! I'm so grateful because the stress has literally just rolled off of my shoulders.
Thanks for your note and best of luck to you for the future. Life is never the same after something like this. But I think it's a good thing..
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September 24, 2015

Thank you for your post! When in doubt, follow your gut. Glad you found support here in the community! What kind of implants are going with?

Please keep us posted on how you're doing!

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September 25, 2015
Thank you! I'm not sure about the type of implants yet which I know is strange. I know they will be silicone...I am honestly just trusting my PS. From the beginning I feel like he has just known what is right from his experience on a case to case basis and his before and after patient pics looked great. He has been so amazing and a professional in every way so I just rolling with it..
September 24, 2015
Thank you for your amazing honesty! I have a bilateral coming in October and you have really helped with setting expectations. Stay strong - you look great!
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September 25, 2015
Thank you! They're a little frankenboob like right now but I'm good with it! Surprisingly that part of this whole process was the easiest on me mentally and emotionally which I was not expecting. I thought after surgery I would look at myself and lose it and start crying but I was just more curious than anything. Everyone deals differently, and the path ahead different as well for all of us. I think that is what makes it so hard. I've found that I've really had to come into a place within myself to find the strength I need. It sounds so cheesy but we really only have ourselves in all of this. No matter how much love is showered on us. We're stuck inside our own heads and have to find the part in there that believes it will all work out.... I wish you the best of luck through all of this!!!
October 15, 2015
Good luck on your bilateral mastectomy. I too had DCIS in my right breast and had a double mastectomy in July. I currently have the expanders in and was a very small C cup and I too wanted nice ones if I was going to go through all this. My fills have been done for over 6 weeks. I am scheduled for my 2nd reconstruction surgery on December 3rd. I am on Tamoxifin and I went with my gut but my oncologist is only recommending for 5 years. I had 2 lymph nodes removed and both of those were negative also.
September 26, 2015
Had a propylactic masc in Jan just finished w 2nd reconstruction last week- finally super happy w results. If I were in your sitaution I would opt out of tamoxifen - I think muscle testing and following a holistic lifestyle to fight cancer is the way to go. It looks like you're from Boston? You should reach out to Dr. Mincolla he's amazing!! He's holistic and a life saver! Good luck & stick to your gut!
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September 26, 2015
I will look him up! Thank you so much!!
October 12, 2015
You and I have a lot in common! Same docs and similar oncology reco. I made some alternative decisions, and it was tough. Email if you want to chat! Lorafreemanwilliams@gmail
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October 13, 2015
Same Docs! That's amazing! I'm going to send you an email soon. Thank you!
October 16, 2015
Ladies - ditto here. I also live in Boston - Same doctors same dcis diagnosis. It could have been me writing that post. I also went with a bilateral mast - for exactly the same reason - but had immediate reconstruction. Like you, I am confused and scared and would love to talk to either of you about how you are dealing with all of this. It's changed my life and I honestly feel like I am 'waiting for the other shoe to drop.' Lisas24@yahoo.com
October 16, 2015
Actually my bad: I had invasive ductal carcinoma, not dcis. But I hope that doesn't keep us from talking. Lisa, I'll send you a note off line.

Peace, Ladies.

Lora
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October 16, 2015
I sent you an email but it said address was invalid... Mine is mish43@yahoo.com
October 16, 2015
Hmmm, not sure what happened there. lorafreemanwilliams@gmail.com should work. But I'll send you an email!
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October 16, 2015
Haha my bad. Fixed it.
October 30, 2017
I had that too back in 2014 invasive ductal carcinoma and 4 out of 5 lymph nodes were CA positive. Did wide lump incision ..... chemo and radiation and started on letrozole. In 2015 I kept insisting that cancer was still there! I was assured it was it was scar tissue by surgeon and oncologist but after I kept on insisting 2016 after an MRI same cyst was till there so I had a mastectomy done with expander. Well to make long story short i've had twice fat transfers in my right breast and reduction on the left 1. Now after all this and changed my treatment to anastrozole 1mg my blood test ca15-3 tripled. I stopped the pills and now oncologist is rubbing his head don't know what to do next! Well anyone with same problem?
UPDATED FROM Stormyseas
2 months post

Results with Oncologists. 7/24/15

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Stormyseas
Yesterday was a huge day for me. After reading a couple of very positive private messages from some women that are on here, I went into my meeting with good energy and ready to face whatever was to come. I have to say it was refreshing to feel like that again after the emotional mess I've been this past couple of weeks.
It was good news!! The troubling cells that they found in my pathology report that they were having tested in California were SO small that they were untestable. In other words not something that they are worried about anymore. Not recommending chemo. I literally felt a huge weight lift off of my shoulders in that moment. They still want to put me on tamoxifen. That is there job to prescribe that and I get it. I am choosing not to take it. I believe I can fight off whatever is to come by getting my natural chemistry back in order with the help of My acupuncturist, Chinese medicine, supplements, lymphatic massage which I think is huge, and modifying my diet as well as my make up, lotions, you name it. It's going to be a lot of work to stick to everything and I'm aware that there is a chance that even with doing all of these things that maybe it will not be enough. Environmental stressors, water sources, etc. are overwhelmingly hard to fathom and it makes you want to give up and just take a pill. I've thought about it. But for me this is the right decision. If any of you have not done your homework on our food sources, body chemistry, chemicals and metals they we are unknowingly exposed to, please for your own knowledge and personal power start doing your research. Skin is our biggest organ. The foundation I have put on my face every day for over 25 years has parabens and heavy metals that directly affect estrogen levels and cells. That change alone I think is huge. I am not a doctor. But I do believe that if a cave man didn't use it, we probably shouldn't either. And it is in my power to do the best I can.
So that's is all for now. And some new pics of my strange hard boobs

Replies (2)

October 15, 2015
I also had a bilateral mastectomy and refused any additional treatment. Quality of life means so much more to me and chemo was going to take that away. I also refused the tamofixen. I recommend reading Dr. Susan Love's Breast Book 2015 edition and Rasical Remission by Kelly Turner, PhD
October 16, 2015
I definitely think everyone is different and you have to go with what works and feels right for you. I'm glad the doctor said you don't need chemo. For me, personally, I've seen too many people die from refusing treatment not to have chemo, when my doctor said I needed it, I did it. As for diet and exercise, I'm not convinced it makes a difference in getting cancer. I'm an incredibly fit vegan, I don't drink (never have) and live a clean lifestyle but I still got cancer.
UPDATED FROM Stormyseas
2 months post

New pics after sixth fill

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Stormyseas

Replies (1)

November 9, 2015
You look fantastic! I had mi surgery on 10/21 and feel great. Some aches, some sleep issues but I feel and look so much better than I had expected. Tomorrow will be a big day. First expansion and also first oncologist visit. I'm worried about the drug discussion but hope simply to listen and ask questions. Thanks again for your photos and candor on this topic.