Waiting for Results

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beccam03
beccam03 Member Posts: 1

Hello everyone,
I should start out by saying I'm young, very young by some standards to be worrying about the things I do. I'm 23. However, my mother passed away at 38 from breast cancer and was diagnosed at 34. She passed away when I was nine and now being a mom to a little girl I can't fathom the idea of her having to go through what I went through. My maternal grandmother also died of breast cancer before she turned 40. I met with a geneticist and was told my risk is 43%. I was floored. I mean, the average is 12% and here I am with a 43%. I decided to get tested for BRCA and am just going through the phase of not knowing. I'm waiting for the results and I feel like I'm going crazy. Lately I've been in a funk. I can't shake the anxiety and stress. This whole process really brings out the bad memories and I'm just terrified. I can't talk to my Fiance because he doesn't fully understand and that isn't his fault. He really is great and supportive but its just not that reassuring and I feel terrible for saying that. I just need some advice or some positive vibes. Really anything.

Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2013

    I'm sorry you have been through so much at your young age. I know what it means to lose your mother to this disease. Of course you are concerned. It sounds like you are doing all the right things. 43% is high but that is probably your lifetime risk. It is no guarantee anything is going to happen. I have a daughter who is 23. The genetic doc said she should begin screening at either 25 or 30. I know the screening is onerous. But- there is so much research going on in the field of BC. New innovations are coming on line every day. Who knows what will be available in the new decade or so. What can you do? Live the best life you can, keep up with your screenings, and don't let the possibility of BC overshadow your life. Hugs to you sweetie.

  • Momcat1962
    Momcat1962 Member Posts: 665
    edited August 2013

    Farmerlucydaisy gave you great advice. Having the test is a good start. I have four daughters, only two great aunts had BC. (Don't even know their ages because they lived in Ireland.) I am going to ask for the blood test anyway. I will keep a good thought for you.

  • kelly32773
    kelly32773 Member Posts: 23
    edited August 2013

    Hello beccam,

    Farmerlucy said it best.... Live your life!

    We all play the same waiting game on one level or another and feel your anxiety. Just know that you are not alone.

    Try not to think of the scary memories of your moms BC. Keep memories of the happy times in your thoughts and live to make amazing memories with your family.



    Remember BRCA testing is only to check for the gene. It does not in any way say that you'll get cancer!



    Take a deep breath, feel the sun, and try not to worry to much about the maybes.

  • Pointvalue
    Pointvalue Member Posts: 146
    edited August 2013

    Hi Beccam,



    Please surround yourself with positive people. Your feelings are very real to you. Please find a kind and caring breast specialist who can help you put your fears into perspective. Taking the brca test is the first step to finding out how great your risk is. I lost my mother to this terrible disease. Tomorrow marks one year since my prophylatic double masectomy. It was a very personal choice. You are so very young and the odds are in your favor that you have time to think about surveillance. I started yearly mamograms when I was 28. I also aligned myself with a wonderful breast specialist who followed me 18 years. At 40 I started with yearly MRI alternating with mammograms. I found taking anti anxiety meds helped me too. Please take care and know you are not alone! Xo

  • DiveCat
    DiveCat Member Posts: 968
    edited August 2013

    Hi there,

    Getting tested is a good start but if you are negative it is important to remember you will be an uninformed negative (unless you can identify a mutation through the family otherwise) so you will still be treated according to your personal family history/risk assessment.

    I don't think there is a "too young" to be worried. I have grown up with cancer as well (two maternal great-grandmothers both had it/died of cancer before I even turned 1, grandmother died of breast cancer during her second primary at 60, mother had it at 48). Anyway, ever since I was 5 or 6 I have been quite aware of breast cancer and have always kind of thought it was my future, too. At different points of my life it brings different levels of anxiety. I feel more anxious at times when I feel I am not being "listened to" by medical providers. I do have a very supportive husband. I encourage you to talk to your fiance though, as he IS supposed to be your partner in life. You can let him know that it is not about him fixing it. It might help if he went with you to your genetic counselor. 

    Do keep in mind the 43% is a lifetime risk. Usually this is done until 80 or 90. Did they give you a "10-year risk" as well? That will likely be much smaller and may bring some peace of mind at least for now. 

    I am an uninformed negative for BRCA (there is no known mutation in my family), so have a family history/personal history lifetime risk assessment of just under 38%. I have not yet had any personal diagnosis of any kind at 34, but I will tell you I live in fear and unfortunately at this point have issues getting the proper preventative care I want here, never mind the proper surveillance (I can get mammos no problem, but MRIs are an uphill battle). I do want a PBMX but am still torn in some degree as to when, and partly due to the fear of surgery, and struggle now with being "uninformed" in many respects as I still have trouble getting proper care.

    For now, wait until the results and proceed from there. 

  • Urbano
    Urbano Member Posts: 6
    edited August 2013

    I am High Risk with Bilateral MRI with/without contrast 2 times a year, every 3 months is my mammogram and the past 10 years had to return for compression/ultrasound. I've been followed by my cancer MD. I've been taking preventative medication for years, had a total hysterectomy in 2010 with one on the side effects of the preventative meds was uterine cancer. Mother had 2 breast cancer, sister had cervical cancer, along with cancer thru the family that I discovered when my mother went thru genetic counseling. Had a serious car accident with surgery that delayed my MRI by 3 months. My mother 1st breast cancer was Sept @ 50. I'm 50 @ Aug. I received a call that I had to have a MRI guided biopsy that I had on Tuesday. Now the wait! Really questioning the radiologist, she told me to prepare for the worst and pray for the best. The anxiety of the high risk testing, very dense breasts, it's been recommended that I have a bilateral mastectomy for years. As the sole income in the household and family living far away, I've delayed that surgery for past 3 years, even approved by insurance.



    NOW is the real anxiety waiting until Monday appt with my cancer MD. Knowing that the enhanced linear showed up on this MRI, and the radiologist reviewed my past 5 years imaging and there was nothing at all in that area. The Internet information is very scary-I can't research anymore! Terrified that it is cancer - then the treatment requirements, side effects. Plus due to surgery from car accident this year, I have very limited PTO left, along with the fear of losing my job/health insurance & FMLA protected leave ends 11/13 from injuries in my auto accident. Along with my fear, anxiety of the results----I don't know if I should tell my employer or not? If it is cancer, hoping its very early due to regular screening & hoping I can figure out if I can attend treatment after work, if its even possible. My employer uses any information against anyone who uses short-term disability which of course they deny (even pregnancy) the are very cleaver, less work, excluded from emails, not introduced to new employees, stuck sending regular emails asking for work, etc.



    I have NO clue what or how I would be able to afford my bills/home/health insurance IF I lose my job! Anyone have advise if I should wait to tell my employer unless I have no choice? Or tell them if I receive bad news on Monday?

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2013

    Hi Urbano - The thought of BC is so very stressful. It sounds like you have done everything right so far. The high risk screening is a real mind bender. I find it humorous that my screening post cancer is so much less onerous and less stressful than pre-cancer. Honestly the main reason I decided on a preventive mx was to stop the insanity of the screenings, biopsies, mammo's, MRIs, ect ect. Now I have yearly MRIs, that is it, and I would want those anyway because of the implants. I don't have much advice re: employer except to say that I used to be a VP at a 200 plus employee firm. We treated those percieved to be in a protected class with kid gloves for fear of being sued. If I were you I'd personally tell someone in HR as soon as I found out.



    Take this one step at a time. Try hard not to think about the what ifs. It will only make a stressful situation more stressful. If there is one thing I learned from having BC it is that I have control over very little in my life. Now I just sit back and enjoy the ride. Hugs to you.

  • Urbano
    Urbano Member Posts: 6
    edited August 2013

    Thanks Farmerlucydaisy,



    Thanks for the response, and encouragement. I received good/bad news. Since I've been under high risk care for 10+ years, they were able to discover the cancer very early that only showed up on my MRI and not the mammogram. I have a tentative appointment with my breast surgeon on the 11th, who was just returning from vacation. The secretary said that after she reads the results she may want me in sooner to plan for my surgery and hopefully 1 level on my lymph nodes since its very early. Pre-scheduled in advance, before my testing I see my cancer MD tomorrow. In the words of my radiologist (who couldn't have been my caring, patient and honest, with knowledge, I asked very direct questions and wanted answers as much as she was able to give) who said prepare to prepare for the worse and pray for the best. But all the years of anxiety of my regular high risk screening was able to discover my cancer very, very early even before it showed up on my mammogram. It's scary to think other woman not under high risk screening not to show up until it advanced further which just shows that women show never be late/miss their mammograms.



    No sure if my appointment tomorrow well not give me much information as to treatment/after care of treatment until after surgery and the findings.



    It horrible to have the added stress to insensitive employers to the added stress. But you are right, at this point I have to just deal with my surgery, results, treatment, etc.



    It's been a horrible couple of years--uterine cancer 2010 from the hormone therapy to prevent breast cancer(during working full time without accommodations working thru menopause, chemo & side effects still carried over 12 PTO days) when I was mentally prepared and informed and insurance approved to have my double mastectomy, a man uninsured, unlicensed hit me and pushed me into a wall where I had to be cut out of my vehicle in 2012 with multiple injuries, knowing my employer reaction, with a severe concussion, multiple injuries only missed 3 days of work, back working FT in extreme pain, 8 month in a knee brace, limping, they wanted to performed knee reconstruction surgery December (I had my own private auto insurance, that did not acknowledge their private disability plan -so I didn't use or cause any increase their premiums). When I notified my employer, they back dated the FMLA completely against Federal Law that I confirmed with DC, local agency & attorney. They have a rolling FMLA backdated before surgery was even considered that now ends November 2013. Along with treating different employees, different on FMLA. The very LAST thing I want to do is get into a lawsuit, I just want a job/health insurance. Just about recovered from multiple injuries, with a slight limp, so I could start looking for other employment before November. Now this new issue which I need insurance and also what type of treatment that I will need but getting close to the November FMLA protection ending.



    I had to tell HR, due to short request to see my surgeon, plus the possibility of the consultation appointment being moved up. The response of HR needless to say was unprofessional, cold, ill informed, then immediately demanding me I have to disclose my MDs names BEFORE I even have any information, any treatment nor a surgery date scheduled, let alone my surgery consultation appointment, on the same day receiving the news of my biopsy (numb & in shock).



    I'm told the removal of the mass/lymph nodes surgery is most likely a 1 day procedure with a few days recovery but not sure until I have my consultation visit. I still have earned 23 PTO days left for the year. Most of my treatment, I attempted after work hours for any/all my injuries as much as possible. It's not until after surgery will I have any treatment plan decided, if I can receive most treatment after work, etc. I've made work during surgical menopause, chemo with numerous side effects day/night with not even using my earned time off for the year. I've just explained the details, that I've done everything possible to be a productive, reliable, employee, limiting any time off despite any illness/injuries - returning earlier AMA attempting to limit any necessary time out of the office. The firm is over 100 employees, so it's not like there limited resources for others to perform the workload, including when I cover others workload during their vacations.



    This company "punishes" any employees who use FMLA. Sadly, I like my job, just not the politics nor having an HR department that has no clue of the laws that they attempt to enforce, worse being a law firm, who has uneducated HR employees that open the firm to many lawsuits but I can't fight "the authority".



    It's hard being single, no family close, needing an income and health insurance.



    But really mentally, I have to stay focused on my surgery and results, treatment plan/after care - that's as much stress as I can handle at this point. I'm just going to force myself to count my blessings (catching it as early as possible) and ignore all the other negativity as much as possible. As much as I hate it, don't want it - I can't change what is but denial sometimes is really nice. But I do want to live, and will do whatever I can/have to do-- this time, and any other time!



    Previously, I hated the anxiety, fear of the high risk constant testing every 6months, daily hormone medication, MDs apps, NOW I realized that really was my blessing - I continue to pray that they find a cure sooner than later!

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