Ovarian Cancer & BRCA1 Positive Mutation
Hello everyone!
I have read so many stories of you brave women who fight daily and still find the positive!! So here is a bit more positive to share!
My Sister was Diagnosed with OV Cancer Stage 4 in July, she just had her last Chemo yesterday and is doing great!! She was tested for gene mutations and came back positive for BRCA1. So I have a 50% chance of having it as well. We really don't have much history of Cancer in our family, other than a grandfather who died in his 80's of bowel cancer. So we are all shocked. I am still waiting for an appointment with a genetic counselor. Not sure what is taking so long. I have decided if i test positive i will have my ovaries and tubes removed & my breasts as well. I am 39 and have 4 children. I want to be able to take control before Cancer has a say. I am worried that i could develop cancer before the testing. I have already had my first mammogram, which cysts, so i had to go back for secong mammo and an ultrasound. My breasts are cystic and dense which increases my risk that much more. Unfortunately there is no early detection for OV cancer, but they did test my CA 125 counts. So i am being proactive, although until i can get the BRCA1 test and get results i feel like a walking time bomb.
Any suggestions? Stories?
Thank you!
Comments
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Rebekah, please try to take a breath. It sounds like you are doing everything you can to be proactive and aware of your body and its uniqueness to you. Gene testing is great and getting your CA125 tested can't hurt - it is definitely a better indicator in ovarian cancer than some of the other gynecologic cancers even though we all get it. I am sorry to hear your sister has had to go through the treatment and I hope she continues to do well.
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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.
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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
_________________________________________________________
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.
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
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Thank you Loretta for
Thank you Loretta for providing all those links about genetic testing. I have thought about having tests as I have two daughters and have wondered if I had any chance of passing cancer onto them. My main concern with testing is cost. I don't know if my insurance would cover it. I will have to investigate. Thanks again:)
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Thank You a Thousand TimesLorettaMarshall 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
_________________________________________________________
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.
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!
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Dr.'s are So Slow
Wow I just called both Genetic Counseling facilities. Neither one of them have received the referral from my Dr. I cannot believe this! What is wrong with peolpe? I did speak with a genetic counsleor who said she would contact my Dr. to request the info. I just hope he will actually do it! She said I would be seen fairly quickly because my sister has the BRCA1 Mutation. They would be willing to do the counselling over tele conference once the referral has been received! I see all of you women who have all been through so much. I feel guilty posting here because I don't have cancer!
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Hi TethysTethys41 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.
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ThermographyRebekah77 said:Hi Tethys
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.
Rebekah77,
Thermography is a non-invasive, except for your pride, procedure, where they use a heat sensitive camera to identify the hot spots in your body. The hotter areas appear yellow, red, or white, the cooler areas, blue, green or black. Yes, you do have to stand naked in front of the camera, but there is no contact, no radiation and no breast squeezing. If a tumor is developing, there will be an increased blood supply to that area, which will show up warmer in the image and this occurs earlier than the development of the tumor itself, which is what shows up on a mammogram.
http://www.thermologyonline.org/Breast/breast_thermography_what.htm
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Hi Rebekah, I totally can see
Hi Rebekah, I totally can see were u r coming from but I would suggest moving forward with the right ppl to back your choices. Family history is weight factor which carries most weight when determining if you need a cancer predisposition test or not. The link between hereditary cancers and genetics is not fully understood and thus, a family history of the disease remains the single, most important risk factor. However, you really need the full guidance of a genetic councillor and a targeted cancer test. I would also wait before making any choices towards the removal of organs as a preventive measure. You need to fully estimate your risks- there is also a 10% risk (in the case of breast cancer) that despite removal, they will still develop cancer as not all breast tissue can be removed, not all the ducts etc. I think celebrities make it sound more simple than it actually is; Jolie has had reconstructive surgery of her breasts. Sometimes multipe operations are required and there could also be complications. I am sure you will feel more comfortable with all this once u have a professional to assist you and answer all your questions. All the very best
https://www.easy-dna.com/knowledge-base/angelina-jolie-breast-cancer-brca/
http://epicahealth.com/is-preventative-surgery-the-answer-to-breast-cancer/
http://www.webmd.com/breast-cancer/guide/preventive-mastectomy#1
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Thank you Dante,
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!!
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Hello again Ladies,
Hello again Ladies,
My last period was short.....only 4 days, then 2 days later cramping and black spotting for 2 days, then 2 days later (today) more spotting, now bleeding and heavy menstral cramping. Weird, my periods have been so regular for years. Maybe perimenopause? My sister stopped having periods at 37, not sure if that was related to her OV Cancer or not? I'm 39! I had a breast ultrasound 2 days ago and still waiting on results. My last one I had the results the next day. So a little worried.
However I am staying positive and optomistic.
Thankfully I am having an ultrasound next Thursday. I also have my appointment with the Genetic Counselor on March 1st.
It is reasurring to know things are moving forward!
Thank you for giving me a place to release my fears!!
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Hey Rebekah
It's "Dr. Marshall" here. (Kidding of course!) This is relative to your “period problems.” You might well be starting early menopause since your sister did as well.
At age 36 (am now almost 78) I was having painful periods and heavy bleeding. My gynecologist said, "Well if you're through having children, you might want to consider having a hysterectomy." Well, that sounded like a winner for me, and so I had my uterus removed. Back then, doctors didn't suspect that ovarian cancer actually most likely starts in the Fallopian tubes. So he left in the ovaries and tubes for hormonal purposes.
Now the recovery was difficult because there weren't any laparoscopic choices back then. But I loved not having to worry about any more painful periods with the bonus of not finding myself pregnant at the age of 40. But now, in hindsight, I would have had my ovaries, tubes and uterus removed. And even though one can have ovarian cancer, even if they have had their ovaries removed, if for some reason, you're advised to have a hysterectomy, I would want everything removed. And no you won't lose your mind. I know you're dealing with a lot of "what ifs" but take it one thing at a time.
Personally, I wouldn’t want my breast removed until I was diagnosed with Breast cancer. If that happened, I would have no problem having one or both removed. After all, bras today make every woman look like “Marilyn and Dolly!” You have a great responsibility being the mom of special needs children. You've got a lot on your plate. Smart women will do well to seek counsel from others who have “been there—done that! It can serve to keep us from making the same mistake. You’re not bothering us by writing. Write anytime.
Love Loretta
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As always, thank you Dr.
As always, thank you Dr. Marshall. You are a wealth of knowledge!!!
My "spotting" has been black & orange. Now 4 days, still hasn't stopped. I will be asking my Dr. about hysterectomy. As for the nipple bleeding, I had an ultrasound, there is "something there" the Dr. is scheduling a Ductogram, then most likely a biopsy.
So here I go for more rounds of testing!!
I really appreciate all of the info i receive from you ladies.
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