DCIS Stories

simsoka · July 2016

I've been on a DCIS journey since being diagnosed in January. I signed on for surgery at first, then opted out and chose to give my body a shot at healing on its own -- just for six months -- to see what it could do. It's been quite a ride, and so worthwhile. I've learned so much from people here on this discussion board, from research, books, and doctors and specialists, especially natural doctors and integrative MDs who offer ways to strengthen the body's inherent ability to heal. My life has been transformed in the process.

I'm at the six-month point now, and just had an MRI with a new, super-powered machine (3.0 magnet vs. 1.5 magnet). The report said the area of DCIS was smaller by about one third. This is great news. But it also shows a small irregular area that might be invasive. It might have been there all the while but wasn't detected until now with the higher grade magnets.

After freaking out for a while, I came to this discussion board to look for stories from others that might help me with perspective. This is where I always come!

Anyway, I'll be having a biopsy of that area on Monday. I may be heading for surgery after all.

I don't regret taking these six months. No matter what, I've learned so much about restoring a healthy body and healthy breasts. I also have been in contact with many women who have had great success in managing their DCIS with non-surgical means. I seek a balance of what works: smart decisions and a healthy lifestyle. I realize most doctors and many women oppose anything short of surgery, and I respect that. Everyone needs to choose the path that's right for them.

Because the stories of women here have been so helpful for me, I'd like to share mine. I've been documenting in a blog (https://simsoka.wordpress.com/). Does anyone have a similar story, or one they want to share?

Caber224 · July 2016

Kathy,

I am very saddened to read of this latest MRI find, but hopeful that the biopsy comes back clean, or is limited to more DCIS. I admire your tenacity to seek our alternatives and hope you can take some comfort in knowing you did everything possible to avoid a surgical treatment of this disease. The reduction in the size of your initial DCIS is great!

I await my next mammogram to see what is happening with the suspicious calcifications that showed up on my pre-radiation mammogram. I am glad my team did not rush to biopsy or surgery with this recent finding. We will let the letrozole do it's job as it did with my first lesion. I am looking into alternative protocols as I cannot see myself staying on this drug for 4 more years, however. I have an appointment next week to see what some options might be.

Keep me posted and good luck on Monday.

-H

simsoka · July 2016

Hi Hope, I just found your reply here. I thought I would get a message notifying me of responses, but apparently not. I have to fix that!

Anyway, it's so good to hear from you. Thank you for the thoughts you shared on my blog. It's an emotional time.

I hope the letrozole does the trick for you one more time. Meanwhile, I'm likely heading for surgery. I'm hoping a lumpectomy is all that's required. Not sure about the rest of it (hormones, radiation, chemo if advised). I have a new team of doctors I hope can guide me to a non-pharma/non-invasive approach. It's all tbd.

To your health, and the health of everyone here,

Kathy

aliana0 · July 2016

simsoka I think it is very brave of you to take that time to find out about DCIS. Over and over again I have read that women need to understand that a diagnosis of DCIS is not a medical emergency requiring immediate surgery. I don't know how long it is ok to wait, but I was rushed into surgery within a week and was later sad that I didn't have time to digest information about DCIS, to understand what it is.

How I wish scientists could find the cause or causes of DCIS and invasive breast cancer and prevent them and find a way to completely eliminate them once they are established.

I wish you the best.

simsoka · July 2016

Thank you, aliana0. I was pushed toward immediate surgery, too. The first surgeon I met with actually told me to not go to the Internet for information. This is the prevailing attitude I've met among conventional doctors. They also do such a good job of instilling fear and of course we respond to that, but it's not a reasoned response. I believe they believe this is the right thing, and cancer often is an emergency, but with DCIS it's not necessarily so. Why it's come to that is confounding. And doctors roll their eyes at the natural and holistic practitioners who try to root out the cause. It seems like it's up to us to begin to question that and demand something else.

I had a first consultation at holistic MD center yesterday, and their entire approach is about doing investigative work to figure out why the cancer was able to grow in the first place. Apparently, cancer cells rise up in our bodies every day, and there are so many checks built into the body's immune response that a lot of things have to go wrong for the cancer cells to succeed and thrive. Sometimes it's a genetic thing, sometimes an imbalance (I'm not a scientist, but that's what I've gleaned in my rather simplistic understanding). I'm having more bloodwork done which will hopefully help them further tailor a plan for my body's particular weakness.

I will be having surgery, but am hoping to avoid the rest of it. Getting the cancer out is only a first step. Restoring the body to health is an essential next step. Conventional doctors don't advise about that. As the doctor said to me yesterday, they wait for the cancer to rise up and focus on how to kill it, but preventive medicine isn't in their set of tools. Just doesn't make sense to me.

It's hard, though. The holistic MD tells me no sugar of any kind. Nada! No pasta, no grains, not even honey or dates. Ouch. He goes by the blood type diet, and being a type O, this means just protein and vegetables for me. He gave me something to help with the cravings: L-glutamine. We shall see!

sandybee · August 2016

I was diagnosed in 2002 with DCIS stage 0. .5 cm. Left breast. Left breast masectomy and tram flap reconstruction. Now 14 years later I have ILC 1.1 cm in right breast (estrogen and progesterin positive). My heart is broken. I had to fight like hell to get that first masectomy as docs thought it was "overkill". I never even thought of getting them both removed. Now I am facing invasive cancer and having right masectomy next week. How I wish I had them both removed 14 years ago.

TrmTab · August 2016

SandyBee, I am so sorry to hear of your new diagnosis, but very grateful for your sharing. I am currently in process of trying to decide what to do with my R, having had a L-MX June 3rd. While I thought a BMX was overwhelming when I was first diagnosed, I'm begining to think of a Pro-R-MX versus a lift and reduce to explicitly avoid what has happened to you...don't know if I could take it, my prayers go to you.

TT

Moderators · August 2016

Sandybee-

We're so sorry to hear of your recurrence. Thank you for sharing your story with us, you are in our thoughts. Good luck on your surgery next week, please keep us posted on how everything goes!

The Mods

emma2015 · August 2016

Sandybee,

I am so so sorry that a recurrence has happened to you I was like yourself with a DCIS Stage0 2mm Your post has only further convinced me that having a bilateral mastectomy with no reconstruction was the right decision. All my family and friends agreed with me, the only ones who thought it was radical were the doctors. I had great doctors and surgeons and I appreciated their input but in the end as I said to every one of them...none of you have to live with the stress and worry of it coming back. Everyone said to me it would be very unlikely it would occur in the other breast.....Thank you, for posting Sandybee every one needs to know the reality yes it can come back and in the other breast Keep us posted how you are.....

sandybee · August 2016

thanks ladies, I am new to this board so please bear with me. emma2015, I am so glad you had them both taken off. It was something back then I never even thought of, and no doc even suggested it. You did the right thing!!

TrmTab, I hope this helps you decide. I have to be honest, I was shocked when my mammogram came back with cancer. I dutifully go to my mams every year and never had thought twice about it. The docs downplayed my DCIS so much back then, especially the "not even really cancer" thing. Where was my head at? The DCIS breast had never caused me any problems before the diagnosis. It is this breast with the new ILC diagnosis that always gave me issues, cysts etc. And now here I am. I CANNOT wait to get this thing removed. One week from today At this point, I'd be happy to go to a drive up window and get it done.

On a side note, my tram flap reconstruction has been wonderful. Brutal surgery? oh yeah, but it was worth it then. But now I understand they do DIEP flaps, much easier recovery. I am not having immediate reconstruction and I am not sure I ever will. Not sure about nodes yet either of course so I don't know what my treatment will be. I am assuming at the very least the drug therapy. Again, I apologize for not knowing much about the "terms"

simsoka · August 2016

Hi sandybee, so sorry to hear. You've probably had surgery already. Hope you're recovering well. I fought so hard *not* to have a mastectomy. My surgery was on Monday and my tiny invasive tumor was successfully removed but the DCIS was extensive -- 6.5 cm, and one edge wasn't clean so I have to go back into surgery. I really want to keep the breast. It's such a personal decision.

I do know someone who had a DIEP flap and was very happy with the results. I hope all is well for you.

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