Karen Hellier is a freelance writer and eBay entrepreneur. She lives happily in the mountains of North Georgia with her husband and her dog.
I'm Still in a State of Disbelief
In the fall of 2019, I was told by a radiologist over the phone that I have low-grade invasive ductal carcinoma. What does that mean exactly? It means I have breast cancer in my milk ducts on my left breast. I had gone for a follow-up mammogram, but many female friends told me that they had also had follow-up mammograms, and it was nothing. So I wasn't too worried.
But after that, I was told they needed to do a biopsy on a dark area on my left breast. The radiologist said there was a 50/50 chance it was cancer. The other possibility was that it was scar tissue from a past infection. Since I had nursed three children, and often had had the beginning stages of mastitis, I was pretty sure that's what it was and tried not to worry. But as promised, three days after the biopsy, I received a phone call with the results of the biopsy. The results were that I have breast cancer.
That was ten days ago. It's still hard for me to accept. During those ten days my emotions have been up and down and I feel like I am just treading water until we see the surgeon. On my down days, I spend too much time on the internet. I joined a Facebook Breast Cancer Support Group because they don't have any breast cancer support groups I can go to nearby. The trouble is, there are some horror stories out there and I have read some and it scares me. On the nights I have read the posts before bed, I have trouble falling asleep. Although I try not to think about it, many different thoughts about breast cancer pop into my head. I learned throughout the week to stay off Facebook at night. On my up days, I laugh a lot, make boob jokes, and spend time with my husband and as many dogs as I can find to pet since we don't currently own a dog.
Apparently, everyone's breast cancer is different. And therefore, each recommended treatment is suggested based on their cancer. I don't even know how to explain the differences, other than some breast cancers are genetic-based and some are hormone-based. I don't know what mine is, but there should be more information based on that pathology report which the surgeon will have at my appointment.
I have 52 questions to ask the surgeon.
Appointment with the Breast Cancer Surgeon
I went to the breast cancer surgeon and at the end of the consult, I was more confused than ever. My cancer is a low grade, slow-growing invasive ductal carcinoma. The size is 5 millimeters, which is approximately 1/2 a centimeter. That's pretty small to be causing this much trouble, but I am grateful and feel blessed that they caught it so early.
My surgeon is recommending a lumpectomy with radiation, and medication to lower my estrogen levels for 5 years afterward. I asked about a mastectomy and she said that is very aggressive since my cancer is so small. But a lumpectomy would include radiation and I am afraid of radiation and how it might affect my heart if they miss. I have researched it and read that radiation could also cause heart issues in the future. It also can cause the breast to have issues like being hard, lumpy, misshapen, or have a red or brown tinge to it. And often the skin of the radiated breast loses all sensitivity.
Plus it feels like radiation is poison to my body. I told her that and she said that while it IS poison to my body, it does kill cancer cells. I imagine myself lying on the radiation table for every session with a tear running down my cheek from the corner of my eye into my hair...you know that type of tear...because I will be allowing them to shoot poison into my body.
A mastectomy would remove the breast, but would most likely avoid the need for radiation or chemo. I am not necessarily that attached to my breasts at the age of 59. They have served their purpose which to me was always to nurse my three babies. My "three babies" are now all in their twenties and so my breasts have done their main job!
One of the things I am anxious about with a mastectomy is that it is more of a major surgery, could possibly cause an infection, and would need drains for anywhere from one to three weeks. Drains that I would have to empty myself. Sorry if that's a little too gruesome for you. It is gruesome to me too. But I would rather empty drains than die of breast cancer!
And remember those 52 questions I wanted to ask the surgeon? She answered a lot of them during the session, but I was so confused by her push to get me to agree to a lumpectomy and not a mastectomy, that I forgot to ask some of them. I brought my husband with me because it's important to have an extra person with you at the doctor's appointments to listen for anything you might have missed. Between the two of us, we gained a lot of information, but when you are talking about something as serious as cancer, it's easy to get overwhelmed and forget some of what was said, or as in my case, forget to write down what was said.
My nurse navigator told me to make a list of pros and cons of each procedure, and that will help me to decide. So I will, and am going to ask my husband Chuck to as well in case he can think of anything that I forgot.
Breast Cancer Is Like a Roller Coaster Ride
Being told that you have breast cancer begins a roller coaster ride of emotions and making decisions that could mean life or death. I was diagnosed with breast cancer two weeks ago today. Since then, I have had good days and I have had bad days. On the good days, I am surprised that I have happy moments and even laugh. On the bad days, I have moments of despair, confusion about what the plan should be, and feelings of numbness.
It seems everyone is wanting to help and tell me their story or refer me to a friend who has gone through the breast cancer experience. That is helpful, but the odd thing is that I don't want to actually talk on the phone about the experience or what I am feeling. I don't mind writing about it through texts, emails, or Facebook Instant Messages, but I can't talk on the phone. They say breast cancer is different for every woman, and that's definitely true. I love to write, and so it's easier for me to write than talk. But another woman might feel better talking about it rather than writing. I seem to be able to talk to strangers about my breast cancer easier than people that know me and love me. I know it will make me cry, and I have already shed a lot of tears since I was diagnosed. I just don't want to hear pity in people's voices. It will push me over an emotional edge.
I think that once I do decide what I want to do, I will feel a lot better. Having a plan that I get to decide on will help me feel more in control.
More to come as I go through this breast cancer journey. Stay tuned...
Genetic Counseling Appointment
Although my breast cancer surgeon was on the fence about whether or not I should get genetic testing, I decided to do it anyway. It will give me more information about what type of surgery I should have, and whether or not my children have to be seen for mammograms earlier than normal.
Read More From Patientslounge
The genetic counselor sat across a table from me and asked questions about family members that had cancer. She drew out a really interesting diagram. I had the choice of just doing the test for carrying the breast cancer gene, or a whole gamut of tests which will tell me if I carry a gene fr any other family cancers.
I spent about one hour with the genetic counselor at the end of which I had to spit into a test tube. It's the same thing you need to do if you have ever had the DNA testing done for Ancestry.com. BUT when you do genetic testing along with a counselor, you have to spit into the test tube in front of them. That was a bit awkward but we joked about it.
The doctor had put a rush on the test because the results will help me decide what type of surgery I will have. So now it's a waiting game; the test results should be back soon.
Stay tuned for more as I update new chapters in my journey.
The Results of My Genetic Testing
I am excited to report that on 11/26/19 I received the results of my genetic testing and it was negative. Phew, what a relief. Not only relief for me but also for my children. It means I am not a genetic carrier of breast cancer and my breast cancer is not hereditary.
I asked the genetic counselor what that meant then in terms of how I got breast cancer. She said no one is really sure what causes cancer, so no one really knows, but mine is not genetic. Since many women who test positive for breast cancer decide to have their ovaries removed, it is one less surgery I will even have to contemplate.
There is a myriad of things that women who have breast cancer have in common. So some of those things may have played a part in why I got breast cancer. But I am not going to dwell on those things right now. I am just going to revel in the fact that my breast cancer is not genetically caused. And celebrate one small victory in my breast cancer journey!
Second Visit to the Breast Cancer Surgeon
Ten days after my first visit to the breast cancer surgeon, I went back to discuss my situation, and tell her what I wanted to do. I had made a list of pros and cons. For every woman that has breast cancer, those pros and cons will probably look a bit different. By the time I went back to see the surgeon, I knew for sure what I wanted to do. Afraid that I might break down and start to cry, I wrote down exactly what I wanted, and handed it to her as soon as she walked into the room. It felt good to be able to take charge of the decision I that way. I wrote down that I wanted a left side mastectomy, and for her to take whatever lymph nodes that she felt would be appropriate. She read the paper, and said, Olay, this is what we will do." Boom, it was as simple as that.
She then went over what would happen, and the hope was that I would NOT have to stay overnight in the hospital. In order to have the best results for no overnight stay, I would be the first patient in that morning and would stay in recovery until mid-afternoon, so the medical professionals could keep an eye on me for most of the day. If I was doing alright, I would be able to go home.
Although I wanted it sooner, the surgery was set for the morning of December 10th, 2019. She would remove the breast, and two of the sentinel nodes, and go for the sentinel nodes through the same incision, not a separate underarm incision. She told me my underarm area would be numb after the surgery, and possibly forever. She also said the hospital would call the day before the surgery to tell me what time to be there on the day of the surgery.
Feeling Better After Making the Decision
Once the decision was made to have the single mastectomy, I felt a lot better. I know myself well enough to know that if I had gone with the doctor's recommendation of having just the lumpectomy, and radiation, I would have been a wreck for the rest of my life always wondering if breast cancer would come back in that same breast. I didn't want that kind of anxiety haunting me for the rest of my life. And if it DID come back, I would have so regretted not having the mastectomy in the first place.
Some women can't handle the anxiety of having a second breast that could possibly get cancer. I know some women who have had both breasts removed just for that reason. I did think about that briefly, but it just didn't seem like the right decision for me at the time. I don't even know if my surgeon would have gone along with that request, and because my husband and I discussed it, and both of us separately felt it was not necessary, I decided against it. Will I be kicking myself in the future if I develop breast cancer in the future? Maybe, but probably not. I have always tried to look at decisions I have made in the past as the best decision I could have made, given the information I had at the time. And that's just how I will need to keep looking at it.
Now, all I had to do was wait for the surgery. Easier said than done!
Waiting for Surgery
The wait for the surgery was hard. I so wanted that day just to come si I could have the surgery and move past it. But we had to wait. And so my husband and I kept busy.
A remarkable thing happened on the Sunday before the Tuesday surgery. It was December and there is a church in our community that really knows how to do Christmas well. Although we don't go there regularly, I needed some Christmas spirit to uplift me so we decided to go to that church on that particular Sunday.
The service went on as normal and there were Christmas hymns sung, a Christmas message given, but at the very end of the service, a screen dropped down at the end of the service, and the Pastor announced a song I had never heard before, but will now never forget. This beautiful song, with pictures behind the words, became my breast cancer anthem, and helped me prepare for surgery not only on that day and the next, but I even had my husband play it on his phone the morning in the surgery as I waited to be wheeled into the operating room. This song and how I came to hear it, let me know that God was truly with me and that I would be okay. I have included the video we saw below.
He Knows My Name by The Maranatha Singers
I Survived Breast Cancer Surgery!
The day of the surgery finally arrived: 12/10/2019. We had to be that the hospital at 6:00 am for an 8:00 am surgery. That morning, I had my husband take some photos of me in some of my most cleavage-revealing blouses, so I would have them to always remember. I had been coming to terms with no longer ever being able to show my cleavage again. It may sound silly, but for half my life, before I had children, I was an A cup and had no cleavage. Once I nursed 3 kids, I ended up with a D cup, and it was nice to show the girls off every now and then. I also took a few photos of me topless (which I obviously and not including here!). And then I was ready to go.
At 5:30 am there wasn't anyone I could call to give me courage, but I had talked to some of my prayer warriors the night before and felt lifted up by their prayers. I played "He Knows My Name" on my phone, and held my husband's hand on the way to the hospital.
We entered the hospital lobby and it was beautifully decorated for Christmas. That made me happy and I even had my husband take a photo of me in front of the display. After the usual checking in and getting undressed, we prayed and I had my husband play,"He Knows My Name" one more time, and then the doctor came in to say hello and I was off to the operating room.
And I woke up with one breast, bandages around my chest, two drains on my left side, and no pain but very sleepy. I had survived breast cancer surgery. The next step was the healing process. And that was no picnic, but not as painful as I had expected so I was grateful for that!
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2019 Karen Hellier
Linda Crampton from British Columbia, Canada on November 16, 2019:
I'm sorry that you're experiencing this situation, but I'm glad that the problem was discovered while the disease is in an early stage. That should be very helpful. Best wishes to you.
Chris Desatoff from USA on November 16, 2019:
What a tough situation to have to deal with. Good think you've got Chuck there my your side! We're all pulling for you!
I think it's great that you're taking the initiative to get as much information as possible about your unique situation and about all of your options. So many people just say, "Whatever you think, Doc," and never really take the time to make informed choices until later on in life. And by then, they often regret some of the rushed choices they made.
Looking forward to next update.
Bill Holland from Olympia, WA on November 16, 2019:
Best wishes and prayers heading your way,my friend. Try to stay positive, although I know how meaningless that word of advice is.
Carola Finch from Ontario, Canada on November 16, 2019:
I can relate to your story. I have been a breast cancer survivor since 2011. I know how scary all the unknowns are. I had a mastectomy on my right side and breast reconstruction. I also went through chemo, radiation, and hormone replacement therapy. I know these things are scary but you can survive it. My cancer never came back. Hang in there!
Karen Hellier (author) from Georgia on November 15, 2019:
Thank you so much for your kind comments. Yes, it is a step by step journey. One that no one wishes they would have to take.
Liz Westwood from UK on November 15, 2019:
So sorry to hear of your diagnosis. Thanks for sharing your experience. I have friends who have been through similar experiences and have been clear for a while now, so be encouraged.
I hope that you can decide on a treatment plan soon. The initial shock is very hard. Suddenly life is blown off track and the big C word looms large. On the positive side, it's good that it has been found so early and radiotherapy seems to have fewer side effects than other treatments. I guess it's like any treatment/medicine. If we stop and read the list of side effects they could put us off. I pray that you will find all the help and support you need to get over this 'hurdle' and your treatment will be effective and easier than you fear, so that you can look forward to a healthy future. You will get over this. Some friends have said they just had to take their journey one step at a time.
FlourishAnyway from USA on November 15, 2019:
I am sorry to hear this and hope that you find an in person support group, perhaps through your local hospital, surgeon, or American Cancer Society? When I was diagnosed with MS many years ago a doctor recommended that I stay out of the chat rooms for MS because they were filled with war stories and every patient’s case is different. I agree and think it has relevance to other medical situations. I wish you strength and healing.