Tell us about your survivor journey.
This is a speech I was asked to give, It was originally written in 2015, redone in 2018 on terms of dates, but nothing else changed>
First of all……I have to confess…I don’t usually speak to more than 10 people at a time, so if I seem uncomfortable, I am. (Even though I had a much bigger crowd on Labor Day 2015 week-end when I celebrated 50 years of marriage to the most wonderful man who has been my rock through all of this.)
But one day, one of the local rabbis asked me to tell my story so that others can pass it along to all the (other) women in their life. (It was Rabbi Andy.)
So here’s my story…. I was never afraid that breast cancer was a fatal disease. When I was just a kid, my father’s mother underwent a mastectomy, and lived quite a number of years after it. One of her daughters had one soon after, and that aunt lived another 50 years. Another of her daughters had one many years later and lived another 20 years, also reaching 90. So my father’s side was obviously questionable. My mother had a mastectomy in her 60’s, and lived till 86. My older sister had one at 53, and she’s now 77. And my sister’s daughter was diagnosed at 43, on the same day as I was. It was never a question of whether I would need one, it was always when I would need it. But when I reached 70 without needing one I thought that I was the lucky one.
A couple of asides: First I must tell you that my niece has lived in Paris with her family for the last 5 years, and when she requested a double mastectomy they made her go to a psychiatrist before they would operate. When she was asked why she wanted to mutilate her body, she said “because I have cancer and I don’t want it to spread”… They finally consented to a single breast only. She’ll probably have the other one done soon as she is back in America now.
Secondly, my sister tried to get the three of us into a research program, but by the time everything got coordinated between Boston, Paris, and Greensboro, it was too late. We did however find out that we are all BRCA triple-negative, but CHEK2 positive, which is an unknown variable. So hopefully while the three of us are still alive, we can get into a program to help locate the gene that actually caused our breast cancer and probably many others, too.
Back to my history: I had gone through a couple of minor operations in my 30’s, and they were both only cysts. After 2 parallel scars, when I anticipated a third one, I told the doctor I wanted it perpendicular this time because I wanted to have a tic-tac-toe game next year. But my doctor didn’t want me undergoing an operation every year, so instead I had an “aspiration under sonographic conditions”. They aspirated 9 cysts, of which 7 were infected. Since then, for the last almost 40 years, only a few scares occurred.
So with that and the rest of my family history, I’ve been having mammograms since well before the recommended age. And 2014 was no different. The letter I received written on August 20th started out as always, and I QUOTE ” We are pleased to inform you that the results of your digital screening mammogram performed on August 18, 2014, are normal… It is recommended that you have your next bilateral screening mammogram in 1 year. The results of this procedure have been sent to your physician and will become part of your medical records.” END QUOTES (mine and theirs).
The next paragraph stated again I QUOTE “According to North Carolina law, we are required to provide the following statement. Then they QUOTE “Your mammogram indicates that you may have dense breast tissue. Dense breast tissue is relatively common and is found in more than forty percent (40%) of women. The presence of dense tissue may make it more difficult to detect abnormalities in the breast and may be associated with an increased risk of breast cancer. We are providing this information to raise your awareness of this important factor and to encourage you to talk with your physician about this and other breast cancer risk factors. Together, you can decide which screening options are right for you. A report of your results was sent to your physician. ” ” END both QUOTES (mine and theirs).
The third paragraph read and again I QUOTE “Your individual breast density classification based on the Breast Imaging Reporting and Data System established by the American College of Radiology is HETEROGENEOUSLY DENSE. Information about breast density can be obtained from the North Carolina Breast Density Information Group using the following website link: ” END QUOTE and then it gave the link.
The last paragraph said and once I QUOTE “Please contact your health care provider if you notice any changes or have any further questions. END QUOTE ” At the time I was feeling what I thought was another cyst. I looked up HETEROGENEOUSLY DENSE, called my doctor, and got scheduled for a digital diagnostic mammogram which took place on September 24th. I was immediately sent across the street for a biopsy. The letter I got back on October 1st confirmed that they placed a biopsy marker clip where they took the sample and I was scheduled for surgery – which was done on October 16th and 17th. (The 2nd operation was needed to stop a bleeder from the 1st operation, and it was on the non-cancerous breast)
The report was slightly misleading, but my oncologist told me they took out 16 lymph nodes, out of which 9 were positive.
I was spared the hell of chemotherapy because at my advanced age it wouldn’t really have added much to my life, except maybe to extend it a couple of months (when I probably wouldn’t want it anyway). I did undergo radiation treatments, and so far the results are good.
But when my doctor told me that the tumor had probably been growing for 10 or 15 years, I started looking back at some of my records.
What I found is what really had me upset. In the August 2013 record that was distributed within the medical community, it mentioned heterogeneously dense. Then said QUOTE “there is no suspicious dominant mass, architectural distortion, or calcification to suggest malignancy. Images were processed with CAD.” END QUOTE.
The recommendation was another screening mammogram in one year. There was no indication to me that anything questionable was even possible. Had I been told the definition of heterogeneously dense at that time, I would have been more aggressive and requested secondary screenings.
PLEASE make sure that [you and/or] every woman in your life, young and old, knows about 3D mammograms and Breast MRIs – and is getting checked regularly, and does a self exam monthly – AND sees a doctor immediately at the slightest suspicion of anything.
Thank you for listening to my ramblings.
What has been the biggest source of support through your journey?
My husband’s unending care. He totally ignores the fact that my body is totally mangled. (I have lumps and bumps all over the place.
What are some lessons you have learned throughout your survivor journey?
I can live an almost normal life as I am.
Do you have any advice for a newly diagnosed survivor? What would that advice be and why?
A breast cancer diagnosis is NOT a death penalty, especially these days.
Second to Nature and A Special Place
Address: 500 State St Unit A, Greensboro, NC 27405
Phone: (336) 274-2003
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