My story surviving adenoid cystic carcinoma of the breast

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My story surviving adenoid cystic carcinoma of the breast

Postby lorlives » Sat May 30, 2009 11:50 am

In autumn of 2007 during self-examination at 46 years old, I found an old familiar lump in my left breast had suddenly changed shape. It had been deep to the chest wall but within 2 months had headed towards the surface and was now visible to the naked eye. I had a mammogram 2 years prior where it was explained to me that I had very "cystic" breasts, which apparently make mammograms a less useful diagnostic tool. I had a needle biopsy done and braced myself for the results. The result came and not only was it cancer, but it was adenoid cystic carcinoma (ACC). This initially knocked me for a loop, but I sought and found strength in God who is always with me. Family and friends are His advocates. I proceeded with further tests to determine the extent of the disease. MRI revealed the left breast tumor in all its glory as well as a perfect sphere "undetermined" in the right lung.

I went online with my diagnosis as would most people these days and learned what I could. As breast cancers go I learned that 0.01% of all breast cancers are of this type. Not exactly the lottery win I was looking for. I had an oncology consultation within a month of diagnosis. I didn't know that I was going to be contradicting the doctor when he came into the exam room. He tried to tell me that he would setup a standard regimen of chemotherapy. I told him, "Doctor, I am certainly no expert on this; however, what little I do know is there's no specific chemotherapy for ACC of the breast." I made it clear that chemotherapy was not a good option for me. He was a little taken aback by this new patient of his. He didn't argue or agree with me.

I (along with my husband) had a consultation with the head of plastic surgery of the same hospital. He spent almost an hour explaining my options. He had a power point presentation that was most impressive and informative.

From the time of diagnosis to actual surgery was two months. I had a left mastectomy and excision of the right lung tumor AND reconstruction all at the same time. The surgeon got clear margins all around. YAY! Lymph nodes were taken and biopsied along with the right lung mass. It was 11-1/2 hours of surgery, but as it turns out it was the right thing to do. Thankfully the lymph nodes were clear, but the right lung mass turned out to be ACC as well. Not the news I was hoping for.

Part of the marathon surgery included about 5 hours of reconstruction. That involved a football-shaped incision from hip to hip for the purpose of harvesting belly fat to replace the mammary gland, a vein and artery to feed it and a skin flap to cover the wound. This was pure genius! I got a tummy tuck and a new boob all at the same time! I had no idea this was an option. It's all me, no implant to wear out or replace, no rejection. For anyone interested, or know someone who might be in the same situation the name of the surgery is called a Tram-Flap procedure. Just do a search online and you'll find info on it. The heal time is a little longer, but the long-term benefits make it worthwhile.

About a month following surgery I had my second follow-up with the oncologist who had changed his tune entirely. Thankfully he had the wisdom to conference my case with 15 other oncologists. 14 out of 15 oncologists agreed that NO chemo or radiation was indicated. That was a nice confirmation to hear indeed. My "treatment" would be (and has been) diagnostic tests. Thus far they have been negative. The last MRI in March 2009 should have put me on to annual testing, but the radiologist wants another one in six months "to be sure". I'm not going to read too much into that.

For a lousy circumstance I've have been so very blessed. The support I've received from family and friends has sometimes overwhelmed me to tears. The three surgeons who did their magic on me came highly recommended. They each lived up to their reputations and the care I've received thus far has been so much better than I expected. I've had no life-style changing chemo or radiation. You all know how these situations force us to focus on what's really important in life. I am no exception. I am grateful to wake every day and thank God for His many blessings.

May you know His blessings in your life.

UPDATE December 1, 2009:

I had a follow-up MRI mid October which revealed something questionable in the original region (left breast 9:00). That prompted a mammogram and ultrasound done early November. The radiologist saw something she didn't like and immediately performed a biopsy on both breasts. The results a week later confirmed a recurrence albeit small (0.5 cm) cancerous tumor that was very near the surface. On 11/20 I had surgery to remove the tumor and clean margins were achieved.

Protocol dictates radiation for cancers that recur. Nothing has changed in terms of my, as well as my oncologist's, understanding of this cancer. I'm scheduled to see a radiology oncologist in a week or so. If he/she cannot produce numbers showing the efficacy then I will opt out at this time.

I like many here, am "treating" with diagnostics every six months. I hope to continue in this fashion. Anything that shows up should be small. I hope it to be operable as was in this last case, if not, I intend to pursue radio frequency ablation (RFA). I cannot express enough thanks to RCA member Kathy for sharing her story about her discovery of RFA. My prayers are with her as her journey takes a turn from rare cancer survivor to the additional battle of leukemia and all that her treatment entails.

God is with me. May He be with you.

UPDATE February 16, 2010:

The radiology oncologist consultation went as predicted. He didn't have any data to backup his recommendation of either aggressive radiation to the entire left chest wall or localized radiation to the breast site. I have opted to observe only at this time as the one healthy lung would be compromised if I were to choose radiation.

Meanwhile I had my 6-month follow-up chest CT last week. My thoracic surgeon viewed the chest CT (who's admittedly not an expert) and he is 95% certain that there's no lung mets at this time. Thank you God.

My next hurdle will be a breast MRI and mammo in April.

Knowledge is power. May God steer you towards the knowledge so that you may gain the power.
Last edited by lorlives on Tue Feb 16, 2010 3:44 pm, edited 2 times in total.
Posts: 8
Joined: Fri May 29, 2009 12:34 pm
Cancer Diagnosis: adenoid cystic carcinoma of the breast with mets to the lung
Relationship To Patient: Self

Re: My story surviving adenoid cystic carcinoma of the breast

Postby sharon » Sat Jul 25, 2009 1:06 pm

Your story has been updated to the main story website here:
--> Adenoid Cystic Carcinoma Breast - Tram Flap

If you have any updates or corrections to make, please reply to this post with them and I will update for you.

: thanks :
Take Care, Sharon - Administrator
This post should not be considered medical advice. Review all information with your doctor.
Forum Administrator
Forum Administrator
Posts: 1455
Joined: Fri Dec 05, 2003 1:33 pm
Location: AZ USA
Cancer Diagnosis: adenoid cystic carcinoma of the breast
Relationship To Patient: Self

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