Ovarian Cancer & BRCA1 Positive Mutation

LorettaMarshall said:

 Hello Rebekah –

 I did read your remarks to Madeline236 who also lives in Canada.  http://csn.cancer.org/node/306253

 As a Stage IV Ovarian Cancer patient, I know what your sister is enduring.  And as for you, I know you said you are in Canada, and with nationalized health care, you don’t have the option of getting appointments quickly.  At least that’s what I’ve heard.  I can only imagine your level of anxiety for your own behalf.  My own sister had Breast Cancer in her 50’s.  I was diagnosed with Peritoneal Carcinomatosis in Nov. 2012.  A second opinion and exploratory surgery revealed it was in my ovaries as well!  So probably my cancer began in the ovaries and migrated to the Peritoneum.  Nevertheless, as a Stage IV, only palliative measures can be taken.  And so, I’m not going to be the one to tell you that you’ve nothing to worry about.  You’ve been blessed with 4 children, and you are very young although you may not think so.  Just remember I’m now 77.  So to me, you are very young.

 Have you asked why the delay in testing?  If you do test positive, I understand your reasoning, you would rather be proactive than “palliative”.  I can’t argue with that.  You’re probably not going to opt for more children at age 39.  It takes a lot of “oomph” to raise 4 children in this day and age.  So I would have no problem having a complete hysterectomy and/or breast removal if I tested positive for BRCA.  After my diagnosis, I was tested and told that I had no genetic disposition to cancer, although there were 20 major cancers on my mother’s side alone.  That’s before I finished querying all the 13 kids in my mom’s family.  One uncle had 4 lung cancers in his immediate family.  Both he and 3 of his sons had lung cancer.  I’ve got histories of Stomach cancer, Breast Cancer, Lung Cancer and Pancreatic Cancer on my mom’s side, and now me with Stage IV Ovarian.  So I’m not going to be the one to “offer a discouraging word.”

 Just be sure you press on till you get the testing necessary.  Naturally, I know you feel the pressure is on because of your sister’s diagnosis with Stage IV Ovarian Cancer.  I know the feeling of a “ticking time bomb.”  But I will say that I’m still here 4 years later.  Now it’s not been an easy road.  I’m in my third round of chemo and it has “laid me low.”  I’ve only finished 3 of the latest rounds of 6 treatments of Carboplatin and Taxol.  I’ve also had Cytoreductive Surgery in 2013 and Cyberknife (targeted) radiation for 3 cancerous nodes on the Caudate lobe of my Liver in 2014.    More chemo in 2015, and still another round which began Oct. 20, 2016.  So I know what it feels like to be constantly fighting the beast, all the while knowing that most likely the Lord is not going to heal me, even though He could.  And yet I am NOT complaining.   But He has a purpose for my being here this long.  I am doing all I can, and He has given me His peace about it all, but that’s not to say it isn’t a physical struggle.  But even with the exhaustive treatments, so far I will say it’s been worth it. 

 Usually, I have a long period of PFS (Progression free survival) in between treatments.  And that is the aim for Stage IV OC patients.  But in hindsight, I do wish that I had both the ovaries, fallopian tubes and uterus removed at age 36 instead of only my uterus.  I had 3 children at that point, and wasn’t planning for any more.  But back then my gynecologist had no idea that most likely ovarian cancer begins in the Fallopian tubes.  I had no problems recuperating from that surgery.

 Most cases of OC are found in the late stage, unfortunately because there are no testings  presently that know how to check for this cancer, and “head it off at the pass!”  So my advice is “follow your heart” and be sure you have thorough testing.  Right after I had my testing, I read that there were 9 additional things that I should have been tested for.  If you do test positive, hopefully you will have some “say so” in who your surgeon will be.

But as with all things, they never remain the same, and when I’m tempted to cross a bridge before I come to it, God taps me on the shoulder and whispers, “Hey Loretta, you have enough on your plate today.  Leave tomorrow to Me!”   So try real hard to “not borrow trouble from tomorrow.”  It will rob you of all the things you have to be thankful for today.  It will be a great relief to be tested and find that you may not have the inherited genes you are imagining.  “Patience is a virtue, and I don’t always pass the test, but try not to diagnose yourself “before the time.”  And yet, you’re doing your homework and considering all options.  That’s always wise!

 As for me, all I can say at this point is, “My times are in God’s hands, and IT IS WHAT IT IS!”  And I’m happy to still be alive, although I’m extremely exhausted right now.  And if you should test positive, and the doctors allow you to make the choices, pro or con, then this is your decision to make.  And when you do, don’t look back. 

 Love & prayers for you and your dear sister,

 Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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 Rebekah:  I just tried to find some helps re DNA testing.  Since you have nationalized health care, do you still have to pay a portion of the bill, or is everything taken care of by the state?  You seem to indicate that you qualify for the testing, but the delay is what’s bugging you.  Have you contacted any of the private organizations in Canada?  There are several listed and some below might give you a clue as to where to begin if it is something you wish to finance yourself.  My insurance paid for my testing, but my doctor had to first get pre-approval. 

1.  https://www.genome.gov/19516567/faq-about-genetic-testing/

 2.  https://www.genome.gov/19016905/faq-about-genetic-counseling/

 3.  http://dnatestingcanada.com/

 4.  https://www.facebook.com/DNAtestingcanada

 “…DNA Testing Centres is leading the way in providing genetic testing to the public 
Call Us Today: 1-866-863-5139 to Speak to a Live agent!...”

 5.  https://www.homednadirect.ca/dna-testing-frequent-questions.html

 6.  http://maxxam.ca/services/dna-testing

  

Thank you So much for your insight and wisdom. I am living each day to the fullest as best I can. Although I hate to admit there are dark days. My life gets a little overwhelming at times, between my kids, work and relationship. Today I struggle, but i find comfort in knowing that tomorrow is a new day and all i have to do is get through today! I have looked into private testing, although in Canada not all are accepted by the Healthcare system. The ones that are, are far too expensive.( $2200.00) I will be calling my Dr to find out where they sent the referral so i can follow up directly with the Genetic Counselor as to a timeline. I did research wait times in my area. It said for high risk ( a family member tested positive) the wait would be 1 to two weeks. Otherwise it is 4 to 6 months. I really appreciate all the feedback!!

Thank you so much!

Tethys41 said:

I understand how scarey this is.  But honestly, you are fairly young and the likelihood that you would develop cancer in the time it takes to be tested is fairly small.  I am BRCA1+ and have taken a preventative approach to cancer, rather than having a mastectomy (I didn't find out about the mutation until after being diagnosed with ovarian cancer).  There are a number of things you can do to prevent cancer, even with the mutation, such as diet, exercise, stress management and limiting your toxic exposures.  You might enjoy reading the book 'Anti-Cancer,' which describes the things you can do to prevent it.  Instead of doing mammograms, I opt for annual thermography, which is better for dense breasts and identifies a potential tumor far earlier than mammograms.  

What is thermography? I have never heard of it. My Dr. told me all they will do is Mammograms every 6 months as well as ultrasounds. I do eat healthy and excercise. I take care of myself pertty well. Although the stress thing is an issue at times. I have been working on that. Not easy with 2 special needs children, one with Down Syndrome 20 and another with Autism 15. Oh yes and a 13 yr old Daughter!! Haha!! Then with work as well, it is a high stress job that i hope one day to change. 

Thank you Dante,

Im expectong to be tested in early Spring..... Been experiencing some not so great stuff lately. Diagnosed with Fibromyalgia, just had blood leakage from one of my nipples. Back to the Dr. On a positive note, i did get a new Dr. She has been wonderful. I have an ulrtasound booked for next month. She wants to be proactive!!

So I had my ultrasounds done yeaterday. I assume everything checked out ok, as the tech was very fast...... it only took a few minutes to do each one. I should know by next week sometime, although i'm not concerned!