There are so many stories on FORCE and so many members willing to share their experiences. We hope these profiles can help you connect with our community and get advice from people like you!
Fall 2007, Stage 1 Ovarian CA; surgery & prophylactic chemo. Apr 2008 3c RT Breast CA. Bilateral mastectomy, chemo & Herceptin. May 2013, no evidence
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In late '90's, family members participated in early University of KS BRCA study. Of those participating, 2 cousins carried BRCA 2 mutation. My female cousin elected to have prophylactic surgeries, which, at the time (2001), was met with skepticism by family. She is alive & healthy today (and early FORCE contributor) and has been vindicated.
I am an RN, knowledgeable about cancer risk factors, including the BRCA mutation family history. Because of fibrocystic disease, I had, for years, undergone 6 month mammo/ultrasound screening (by a surgeon). Even after being diagnosed & treated for early stage ovarian cancer, I felt I was preemptively on top of any breast disease that might develope. My oncologist was BRCA savvy, but we both assumed I carried the mutation, and, that the test result would, therefore, only be of academic interest. It would not change ovarian treatment protocols or breast screenings that were already being done. Therefore, I deferred BRCA testing; at the time, required genetic counseling not conveniently available.
4 months after completing prophylactic ovarian chemo regime, a Rt breast mass (also primary) was found during routine screening. It was 3 C and had already invaded RT lymph nodes.
By then, chemo and cancer weary, I sought expert genetic breast cancer consult (Indiana U), before undergoing new rounds of aggressive treatments and surgeries. As a hospice oriented nurse, I was quite prepared to shoot for palliative quality of life vs dreaded treatment terrors, especially if prognosis was grim. As I recall, IU specialist said that my prognosis, and, nature of treatment agents would be "difficult,"
She and my local oncologist, nevertheless, encouraged me to go for it, collaborated on treatment plan that could be done locally. The treatment regime included the newly introduced drug, Herceptin. By chance, I happened to catch a TV movie about Herceptin trials, the very day before my oncology appointment, where I had been prepared to decline treatment and spare my body any further assaults.
No one is more surprised than I am that 5 years after diagnosis, I have no evidence of active disease. I am a person of faith, so credit Him with that outcome (and probably my catching that Lifetime movie), as well as expert medical care.
The discouragement felt when breast cancer was identified, so very, very, soon after completing the chemo for the ovarian cancer. I just could not imagine how any new cell could have developed in a body filled with the aggressive agents that had been used. It was explained by the IU expert, who examined all slides, that the breast mass was particularly aggressive, a cell probably had not existed 4 months earlier.
Silly, but, it was also discouraging to have my head shaved again, just as it had started to sprout after the first round of chemo. I had felt I had just begun to regain my identity (as the person in the mirror) when it was stripped away, again, this time for a planned year plus of treatment.
Also hard, was just the day to day functioning, taking care of house, pets. Could no longer work due to fatigue, chemo fog, shortness of breath, all lasting long after the treatments had completed.
Although I had wonderful family, friends, and church fellowship support, I lived alone, and, resisted asking for help. I have, however, treasured memories of the love and assist that was given to me despite myself.
Because of diligent breast screening, I mistakenly assumed I would catch anything early enough to intervene. If I'd appreciated that reality, I would have had the BRCA testing done once my family risk (2000) known, and, I would have had, as my cousin did, the prophylactic surgeries. I did, finally, test, and, as expected, have the BRCA2 mutation.
Also of consideration for all families with BRCA mutation histories: In 2008, after a short illness, my brother died stomach cancer When told of BRCA 2 mutation in the family, his oncologist responded that it was "only for breast cancers." His only child is negative for the mutation, but, we feel my brother probably also carried it, and, it may have resulted/contributed to the stomach cancer.
It has helped me feel connected to an informed community, one I can easily access for updates and information. I also share FORCE newsletters with doctors, friends and colleagues, anyone who I feel might benefit from the authoritative information and user friendly presentation.
I would advise anyone with family risk indicators to consider testing. Anticipate your doctor may not yet be informed; share FORCE materials and educate him/her.
RE chemo fog: Lumosity.com has comprehensive "brain" exercises and has posted Stanford U breast cancer treatment studies to support improvements gained from using their program. I have regained, to my amazement, and, despite my advancing years, pre-chemo cognitive function. Their exercises are complex, fun, and have relieved my concerns of early onset memory loss.