Friday, October 1, 2010

My Journey with Breast Cancer



October isn't just the month associated with fall and Halloween. It's breast cancer awareness month and I'm going Pink all this month. Why? Because not only am I a writer and a mammographer, I'm also a breast cancer survivor. And this is my journey.

In June 2007 I went to the doctor to refill my migraine medicine. It had been 18 months since my last mammogram so the doctor wrote an order for me to have another one. I had no lump. No symptoms. And no family history. I did not meet any of the criteria for high risk.


What are the risk factors?
Being female
A first degree relative diagnosed with breast cancer: (mother, sister, daughter, maternal grandmother, maternal aunts)
Early menarche--younger than 12
Older age at menopause--over 55
Years of artificial hormones after a hysterectomy
Nulliparity (Never having children)
Not breast feeding
Late first time pregnancy


I felt confident this mammogram would be negative too. I was 47 years old and like I said, I had not felt any lumps and I do monthly self-breast exams. Even my clinical breast exam was normal.

I didn't expect any surprises. So at the end of the day on June 14, 2007, after I'd done my last mammogram patient, I became the patient and one of the other mammogram technologists (Linda) did my mammogram.


 
In 2007 we still had film screen rather than the digital mammograms we have now, so we had to wait for the films to drop out of the processor. And the moment the films dropped, I knew. I had breast cancer. It wouldn't be officially diagnosed until after a biopsy, but I knew the moment I saw the spiculated lesion next to my chest wall. I'd seen enough lesions in patients diagnosed with breast cancer to know I wasn't going to be lucky.
(The lesion in question is circled on the films above.)

Linda and I immediately took the films back to the radiologist's office. But it was Friday June 14th, 2007. The Friday before Father's Day. The radiologist had already left for the day to start his week-long vacation. So, I had to wait until Monday. But despite suspecting the worst, I kept my suspicions to myself. I didn't even tell my husband. We even hosted a Father's Day gathering out by the pool that Sunday. I remained up-beat, but that one centimeter lesion on my mammogram loomed in the back of my mind.

On Monday, another radiologist read my films and ordered a diagnostic mammogram. Of course, by this point, I'd told my family there was something on the original mammogram and I needed additional images. I was still optimistic when talking to them, but I knew. I had the diagnostic mammogram on June 21, 2007.

The difference in a screening mammogram and a diagnostic mammogram is the number of images taken, the type of images taken, and the doctor looks at your films while you're still in the department. 

And when the original area seen on my mammogram was magnified, it looked even more ominous.So, I had an breast ultrasound and it didn't look much better.

So, the radiologist ordered a biopsy. And because I work at the hospital and was willing to have the procedure done there, our surgeon worked me in as quickly as possible. I had a breast needle localization biopsy on June 28th, 2007. And the lesion looked bad on the specimen image too.

But I wouldn't know anything definitive until the biopsy results came back from the pathologist. So, despite a gut-deep feeling that it was cancer, I remained positive. We even planned a long weekend trip to Emerald Isle for the July 4th weekend. My daughter and her boyfriend left to join his family on July 1st. And I was going down on July 3rd after work. That just happened to be the same day I got my diagnosis. I had breast cancer.

Not just cancer, but an invasive carcinoma with DCIS. DCIS is ductal carcinoma instu--which is a tiny, early cancer contained inside the duct that hasn't spread to the surrounding breast tissue. But I had DCIS and an invasive carcinoma which meant one of those tiny DCIS cancers had spread and bloomed into a cancerous tumor. One that was still too small to feel but it was deep in the breast next to my chest wall. And as it turned out, it was a very aggressive tumor.

But I went to the beach and my husband joined me on the 4th. I told my daughter before he got there. She already suspected the worst by this point. At first, she refused to discuss it. She'd just turned 18 on July 1st so I'd kind of put a damper on what should have been a happy occasion for her. She'd just graduated from high school and was about to start college and..her mother had breast cancer. My older daughter is married and lives in Germany with her military husband. I'd already called her and given her the news. I'd never been more proud of her. She put on a brave front and promised not to cry until she got off the phone. God bless her.  I couldn't have handled it if she'd fallen apart thousands of miles away.

And my dear, darling husband was a rock. He stood by my side and tried so hard not to show fear. Before I got the official diagnosis, I made a pact with my husband and youngest daughter. No two people could show fear or get upset at the same time. If one cried the other two had to stay strong. Stay positive.We had to keep the faith. And we stuck to that agreement throughout my ordeal.

But my ordeal didn't begin until we came home from celebrating July 4th at the beach.

When I followed up with my medical oncologist, I learned I'd have to have chemotherapy. I was shocked. I thought since the cancer was so small and had been caught early, I'd get by with just a lumpectomy and radiation.

A lumpectomy is where the surgeon goes in after the initial biopsy and cancer diagnoses to remove more tissue to make sure they got all the cancer cells. I knew I needed another surgery, but chemo?

I was devastated. But I had an aggressive cancer and I was under 50, so chemo was the best way to fight the disease and ensure that it wouldn't come back. But all I could think of was throwing up and going bald. So, I broke down. But then I pulled myself together. I had eight weeks of chemotherapy ahead of me and I needed to be strong. And a MUGA scan (a nuclear medicine test of the heart) showed that my heart was strong enough to endure chemotherapy.

The good news was that because my tumor was so aggressive, it would respond well to chemo and radiation. But it was close to my chest wall so I feared it had spread. It was also HER-2 negative and FSH negative.

HER-2 is a genetic factor which encourages cell growth. FSH is a follicle stimulating hormone that can also affect cancer cell growth. My tumor lacked these components but it was still a fast growing, aggressive tumor. But I was not a candidate for the cancer drugs Tomoxifin or Arimidex.

The good news for me is that breast cancer that is positive for HER-2 and FSH sometimes metastasize to the brain. The bad news is that breast cancers that do not have these hormone receptors often come back in the same breast or in the contralateral breast. But first, I had to get well before I could worry about a recurrence. And that meant another surgery.

On July 13--yes, Friday the 13th--but the 13th has always been a lucky day for me--I had a lumpectomy. I also had a lymphosintigraphy, which is a nuclear medicine/ surgical procedure to remove and evaluate lymph nodes to stage the cancer and see if it's spread. A sentinel or main lymph node in a branch is injected with a radionuclide so the surgeon can trace the lymphatic branches from the main or sentinel node and remove them for biopsy. My surgeon removed the sentinel node and three other nodes. And they were all clear. No cancer in the nodes. It had not spread, thank God! Lucky #13!


I also had a port-a-cath implanted in my left chest wall that day. A port-a-cath is a small medical appliance inserted beneath the skin. A catheter connects the port to a vein and the port has a disc like section where drugs can be injected and blood drawn without having to find a vein each time. And since chemo can destroy the vein wall, its a good thing to have when undergoing chemotherapy. The port-a-cath is shown in the upper right side of the x-ray image (left side of the chest.)

The surgery wasn't that bad, but it left some bruising and scarring. The small mark on my left shoulder is where the port-a-cath is. The bandage over my right breast covers the surgical scar.

The bruising and bandage under my right arm is where the lymph nodes were removed. And because the lymphatic system is a fluid system that drains throughout the body and I am missing four nodes on my right, I cannot have any blood drawn from or medications injected into my right arm or hand. And I cannot have an IV or my blood pressure taken on the right side for at least ten years. The reason behind this is to prevent lymphadenopathy, a condition in which fluid backs up in the lymph nodes and "drainage" system causing swelling in the limb. And I do not want a fat, swollen, right arm. So, no IV's, blood pressures, or blood draws for me on this side.
The original scar from the original surgery wasn't bad at all. But then I had the lumpectomy, and radiation which caused the tissue to retract. So, the scar I have today looks worse than the scar pictured on the left, but I'm getting ahead of myself.

When I had my second medical oncology visit I didn't break down like I did the first time. I knew the chemo drugs were coming. That's the visit where she told me that I'd be receiving two chemo drugs: Adriamycin and Cyclophosphamide every other week for eight weeks. And that I would lose my hair. ALL my hair. And so on July 20, 2007 I got a hair cut so it wouldn't be as dramatic when I went bald. The picture on the right is of me with my haircut posing with two women who helped me get through the worst. Jennifer and Linda, my friends and mammo co-workers.(I'm in the middle.)

I had my first round of chemo on August 1st. And started losing my hair on August 13th. Okay, maybe 13 isn't such a lucky number sometimes.

But I was still working so it just didn't seem sanitary to shed in a hospital. So, I got my husband to shave my head. I went wigless at home.





But I didn't want to freak out my mammogram patients. So, I wore a wig to work. Who wants to have a screening test for cancer by a technologist who has cancer? And I didn't want to have to answer questions about me when it should be about the patient when I'm doing a mammogram.






But my hair kept coming out even after I got my head shaved.


By Halloween, I was completely bald, my scalp as smooth as a baby's bottom. The picture below is one of my favorites. I'm holding my nephew who had his little bald head covered by a cap. He was so adorable. I was adorable too. Because I was going to live!





I managed to get through chemo without missing too many days from work. I work four ten hour shifts so I was off on Friday's anyway and was back at work by Monday. But after the last two treatments I had a problem called "Nadiring." That's when the white blood count drops dangerously low and you're at your most vulnerable for infection. I also had severe diarrhea so I missed those last two Mondays during chemo.

Then I had a scare after chemo before starting radiation. Because my second surgery--the lumpectomy-- showed some residual DCIS near the specimen margins, it was possible I'd still have to undergo a mastectomy. My margins were clean within one cm. The doctors like to see a two cm clean margin. So, I had to have an MRI to determined whether or not I'd have a mastectomy or radiation therapy. I had the MRI on October 3, 2007.

The MRI showed no cancer in either breast and so I was cleared to proceed with radiation treatments. I did not have a mastectomy.

I continued to work while having my radiation treatments but I got tired towards the end and felt as if it took all my energy just to put one foot in front of the other. But I completed my treatments just after Thanksgiving. And by Christmas, my hair started coming back. I stopped wearing a wig and was declared cancer free. And I had another surgery to remove the port. If if my cancer comes back, there will be no more chemo. Just a mastectomy and radiation.

But I still had to see both my radiation and medical oncologists on an alternating six week basis for another six months.

By Valentine's Day, I had even more hair. And I'd graduated to oncology visits every three months.





I eventually ended up with a head full of thick, curling hair that I absolutely loved.


And I stopped seeing my radiation oncologist. But I was still seeing the medical oncologist every three months and having mammograms every six. And when I went for a follow up MRI in 2008, I had another scare. Something showed up in the opposite breast. My left breast. My healthy breast. So, I underwent a stereotactic biopsy under MRI. Much easier than the needle localization biopsy. I just laid on my stomach on the MRI table and the doctor used MRI guidance to see the area, insert a needle, and remove a tissue sample. I didn't even miss a day of work afterward. And thank God, that biopsy was negative.

I lost my curls when I cut my hair the first time, but at least I have hair. It's been over three years now since my diagnosis. I still see my medical oncologist every three to four months. I still get periodic lab work and until I had my last mammogram in August, I was getting mammograms every six months. But I've finally graduated to yearly mammograms and God willing, I will be getting negative reports from my mammograms for a long time to come.

My oldest daughter, Jennifer, still lives in Germany with her husband who is in army aviation. And my youngest daughter graduated from x-ray school and is now attending the UNC School of Medicine for Radiation Therapy.

Ironically, she has always wanted to be a radiation therapist. When she was in 6th grade, she donated over 7 inches of her hair to Locks for Love, an organization that uses real, donated hair to make wigs for children with cancer.

My husband is still loving and supportive and my marriage is stronger than ever. I'm much closer to my parents and brother, especially my mother. And in May of this year, I finally had my first book published. Out of the Darkness is a paranormal vampire romance published by The Wild Rose Press.
http://www.thewildrosepress.com/out-of-the-darkness-paperback-p-4065.html
 

Life is good. But the fight continues.






If you have questions about breast cancer, ask your health care provider or go to the American Cancer Society's web page at www.cancer.org

You can also assess your risk for breast cancer at  http://www.cancer.gov/bcrisktool/Default.aspx
If you feel you fall into a high-risk category for breast cancer, please, follow up with your health care provider. And remember to follow the recommendations set forth by the American Cancer Society, the FDA, and the American College of Radiology when scheduling your mammograms.

The American Cancer society, FDA, and ACR recommends baseline screening mammograms for all women at age 35. With no family history of breast cancer, all women should start having yearly mammograms at age 40 or sooner with a strong family history.

If your mother was diagnosed with breast cancer before age 49, you should subtract 10 years from the age your mother was diagnosed and start having yearly screenings then. I was 47 when I was diagnosed, so my daughters should start having yearly screening mammograms at 37 rather than waiting until age 40.

Again, as with any medical advice you find on the internet, please verify with your health care professional. And take control of your own health care.

More breast cancer blogs to come later in the month.

So, stay informed and "Fight like a Girl."













14 comments:

  1. Wonderful to hear your story again & I'm thankful you caught it in time & are still with us!! I proudly wear pink for you too!! Hope to see you soon!
    Love,
    Lyn

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  2. Terrific story, Lilly. Thanks for sharing. I admire your spirit and dedication.

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  3. Thanks so much for sharing this information. You are an inspiration for all women.
    God Bless You!
    Hugs

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  4. Lyn, Thanks for being there for me though your prayers and emails while I was going through it. And Becky, thanks for being so good to me now. I'm so thankful for friends and family. Caroline, I can't wait to share yours and your daughter's story here on the 15th.

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  5. Thanks so much for your detailed post, Lilly. As a sister survivor, I believe we can't ever give out too much information. The more we know, the les frightening it becomes. Bless you and your family for the courage you all have shown.
    (((hugs)))

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  6. Pamela,
    Glad you're a member of the survivor's club. Hugs to you too.

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  7. You are awesome. Thanks for sharing this. It helps.

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  8. You're welcome Jennifer. And I'm looking forward to having you on my blog this month!

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  9. Brava, Lilly, for your bravery and for sharing your story.

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  10. Thank you, Marie-Nicole, for the breast cancer awareness blog you posted on your own blog. I'm so glad your story had a happy ending!

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  11. I have this bruse like vein on my upper left breast I don't feel pain just twitchies and small like pinch feelings sometimes I had it for years never gone away it has darkened up some.Amy advice what it could be I waiting on my doctors appointment I really worried and can't wait.I wish I could share a picture of it or better yet I have posted a pic to Facebook under my name.Thank you for sharing your story.Gos bless you!

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  12. Lena, do see your doctor, but don't panic. I am not a physician, but I am a mammographer. And although bruises normally go away, you can get what's called an "oil cyst" in your breast secondary to trauma. It can be confirmed on a mammogram. Also, breast cancer is rare in women under 50, but sadly, it is usually more aggressive, so don't hesitate to see your doctor whenever you have any physical changes in your breasts. Stay positive, and keep the faith. Good luck with your appointment.

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  13. Hi Lilly, I am 47 and reading your blog in hospital. Like you I didn't have any risk factors - no family history. I was diagnosed 2 months ago, have aggressive grade 3 invasive ductal carcinoma stage 1A. Like you, I thought that I would get by without chemo - but alas I am HER2+, so here I am, in hospital after my first chemo session with neutrophenia. Your story has given me so much hope. I just wanted to thank you for sharing. I was searching for information about portcaths and came upon your site. Your photo has helped me to decide to have one as I can't handle all the blood tests and injections as my veins are collapsing. SO the information you have provided has been very useful. All the very best.

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  14. So glad you found it useful! And the port was a Godsend. It did creep me out though whenever I drove because the seatbelt came across it, and I kept having nightmares about being in a minor wreck and having the belt pop it out. You might want to invest in one of those seat belt cover thingies. Or maybe, it won't bother you. I hope not. I got a Neulast injection 24 hours after every chemo treatment. I can't tell you how much that helped with my blood counts and feeling anemic and wrung out. You will get through this and be a stronger person for it. God bless!

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