Sue Swenson

By Previve on October 22, 2010 | Category: Previvor Stories | 2 Comments

I am of Ashkenazi Jewish decent (my grandmother was born in Germany and was Jewish). My sister, 13 months my elder, died of breast cancer in 2002. She was diagnosed at approx 32 yrs of age.  I am now 53, and have been an engineer- project manager at IBM for 31+ yrs.

Sue Swenson

At my urging, my 26 yr old daughter (then 25) went to the Mayo Clinic, Rochester, for genetic counseling/testing since both sides of her family have Jewish backgrounds and history of breast cancer. She tested positive for BRCA2 genetic mutation, and I was almost positive that it was from her father’s side. I, however, went to the genetics counselor with my other daughter, age 23 (now 24), and we both tested positive for the same mutation. All 3 of us have BRCA2. My 26 yr old then scheduled and had a mastectomy with immediate reconstruction. My 24 is now pregnant and the decision will come later.

I had  laparoscopic salpingo-oophorectomy  and a bi-lateral Prophylactic Mastectomy with reconstruction using temporary saline extenders on 06/17.  My ovaries, fallopian tubes, and right breast were healthy looking, although I did have cists as well as endomistriosis.  My left breast had changing tissue and DCIS, therefore they did remove a node on my left arm, the biopsy came back negative, fortunately. I had skin sparing breast surgery and my nipples were removed and were being  “transplanted” to my new breasts. The nipples did not take and approximately one month later, I had more surgery, Irrigation and Debridement  to reopen the wound/infection,  wash it out with a sterile solution, removeing any dead tissue, and closing it up (with stitches across both breasts).  I know have the tissue expanders, and I think I am at my final size. “Final” surgery is scheduled for the exchange to the “permanent” silicone implants in late December, since I have already reached my insurance annual out of pocket max.

I remain concerned about my deceased sister’s daughter, Naomi. She is 25 and has no insurance nor does she want to find out if she is BRCA 2 positive at this time. It brings back too many memories to her.

Additionally, there is other cancer history in my family, and I am trying to find out if there is any relation to this genetic mutation. My mother, her aunts, her mother, and her grandmother all had CLL (Chronic-lymphocytic-leukemia).  Actually my great grandmother’s was considered leukemia since I do not think CLL had been determined at that time.   I know there are several papers on this subject, but not much detail.

Thanks,

Sue Swenson

2 Responses to “Sue Swenson”

1. Marissa Levesque

   November 19, 2010 at 3:36 am

   Hi Sue! What an amazing story. I am also of Jewish descent. My family history is overwhelming and actually both BRCA1 and BRCA2 exist in my family. I am BRCA1+. At 23 I had a preventative mastectomy. I have a 6 year old daughter by the way…and an amazing support system. My tissue expander on my right (well the incision) got infected as well. It had to be removed, and then replaced, and expansion restarted. I had them swapped for the implants end of June. I am in the middle of launching a non profit, Pink-Surance. I plan to fund genetic testing for women at high risk who have little or no health insurance. We are also working on a clothing line for women going through this experience, from post surgical camisoles to evening dresses. We want to empower women and work on ensuring they feel beautiful and comfortable with their body image during and after this experience. It is truely amazing what the plastic surgeons can do! We also plan to advocate for the fertility treatments that can break the chain in families like ours. You can find our Cause and Group Page on Facebook. We will have our website up and running shortly, the legalities are almost taken care of! marissa.pinksurance@hotmail.com

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2. Katie

   December 30, 2010 at 6:04 am

   Hi Sue,

   I can relate to your niece’s thinking. My mother was diagnosed with breast cancer at 35 years of age. At 46, she died. Two of her sisters have also been diagnosed with breast cancer. I do not want to have any genetic tests to find out if I carry any of the mutations commonly associated with this disease. I am married with two small children. For me, ignorance is bliss. The fear is always there, but having this confirmed by a test will force me down a path I’m not willing to walk. I’m not willing to undergo such serious surgery and dramatic body changes just in case. I would rather live life to the fullest now, instead of introducing fear, uncertainty and grief into it unnecessarily. I understand the risks. I understand the disease. I am well educated in this field. But it is such a personal choice. The right choice for you may not be the right choice for someone else.

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