BRCA2 and MSH6: Family finds it hard to discuss cancer & feelings

Posted by ali1974 @ali1974, Oct 8 9:38pm

Hello:
My name is Alice, I am 47 yrs old. I am curious if anyone out there has both tested positive for BRCA2 and MSH6 genes? I had breast cancer in my early 30’s that resulted in a double mastectomy after treatment. I also had a hysterectomy for atypical cancer cells before the cancer diagnosis. I am very curious if this is common? I am currently being tested for PBC and have bleeding of non gynecological issues. I went to a urologist yesterday and I have to have additional testing. I am so overwhelmed with all these tests and can’t keep up with everything. I honestly, at this point want to say no more drs.

Does anyone have these feelings too? My family doesn’t want to discuss any of my feelings or possible diagnosis and it’s something I have to process. Any suggestions?

Thank you for listening

@ali1974
Dear Alice, you certainly have been put through the proverbial wringer at a tender age, and, although I'm a comparative oldster, I can emphasize with your feelings regarding more doctors and tests. It can feel overwhelming at times. We already have enough stress in our lives dealing with how Covid restrictions have changed our lives. Adding medical issues to that can take our breath away.

When I'm going through those medical phases, I grit my teeth and tell myself that, the sooner all the testing and doctor visits are behind me, the sooner I can get back to my life, such as it is. For me, anxiety and fear can lead to depression and depression can lead to abandoning self-care, so I have to watch myself like a hawk. But ignoring anxiety and fear also is dangerous. We all need someone with whom we can discuss those feelings and let off steam. It's not as though we need someone to tell us what to do — rather we need a neutral, understanding ear who serves as a sounding board. We'll sort it out for ourselves by talking it out over time.

If there isn't a family member who can serve in that capacity, perhaps there is a friend, or a pastor, or a counselor willing to speak to you over the phone on a regular basis. If a local church has a Stephen Ministry program, Stephen Ministers are trained to be good non-interferring listeners who will meet with you by telephone or Zoom on a regular basis until in-person restrictions are lifted. There also are local hotlines which can be helpful. It's a thought.

In the meantime, I wish you well and will be hoping for the best of outcomes for your health. Be as brave as you can muster.

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@elizm

@ali1974
Dear Alice, you certainly have been put through the proverbial wringer at a tender age, and, although I'm a comparative oldster, I can emphasize with your feelings regarding more doctors and tests. It can feel overwhelming at times. We already have enough stress in our lives dealing with how Covid restrictions have changed our lives. Adding medical issues to that can take our breath away.

When I'm going through those medical phases, I grit my teeth and tell myself that, the sooner all the testing and doctor visits are behind me, the sooner I can get back to my life, such as it is. For me, anxiety and fear can lead to depression and depression can lead to abandoning self-care, so I have to watch myself like a hawk. But ignoring anxiety and fear also is dangerous. We all need someone with whom we can discuss those feelings and let off steam. It's not as though we need someone to tell us what to do — rather we need a neutral, understanding ear who serves as a sounding board. We'll sort it out for ourselves by talking it out over time.

If there isn't a family member who can serve in that capacity, perhaps there is a friend, or a pastor, or a counselor willing to speak to you over the phone on a regular basis. If a local church has a Stephen Ministry program, Stephen Ministers are trained to be good non-interferring listeners who will meet with you by telephone or Zoom on a regular basis until in-person restrictions are lifted. There also are local hotlines which can be helpful. It's a thought.

In the meantime, I wish you well and will be hoping for the best of outcomes for your health. Be as brave as you can muster.

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Hi Elizm,
Thank you for taking the time to respond to my post.
Your words are very kind. I have better days then not and try to stay positive. I have 2 daughters that I fight for. It will be all okay just as I mentioned it’s very exhausting mentally and physically. Thank you again for your feedback it was very insightful.

Regards,
Alice

Liked by trixie1313

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Stand still…. listen to your body and if you believe in God talk to Him and He will speak back to you if you just listen. Your family is afraid and that is understandable, they aren’t talking because they don’t know what to say. Give them time show them your strength and I promise it will get better and everything will as it should. Psalms 27 has sustained me perhaps it will help you too.

Liked by trixie1313

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@rraw

Stand still…. listen to your body and if you believe in God talk to Him and He will speak back to you if you just listen. Your family is afraid and that is understandable, they aren’t talking because they don’t know what to say. Give them time show them your strength and I promise it will get better and everything will as it should. Psalms 27 has sustained me perhaps it will help you too.

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@rraw
And Philippians 4:13 has carried me through as well. One day at a time for these challenges.

Liked by lisman1408

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@rraw

Stand still…. listen to your body and if you believe in God talk to Him and He will speak back to you if you just listen. Your family is afraid and that is understandable, they aren’t talking because they don’t know what to say. Give them time show them your strength and I promise it will get better and everything will as it should. Psalms 27 has sustained me perhaps it will help you too.

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Sorry for the late reply, I don’t always log
on. I would like to say thank you for you kind words. I appreciate your feedback and your right not everyone is comfortable with those types of talks. I am extremely close to my kids and I love them dearly.
You gave me some significant guidance.
Kind regards,
Alice

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@trixie1313

@rraw
And Philippians 4:13 has carried me through as well. One day at a time for these challenges.

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Thank you, I will review both passages.

Liked by trixie1313

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Hi @ali1974, I hope you don't mind. I augmented the title of your discussion because I think this is a really good topic of discussion. Let me know if you agree with the title change "BRCA2 and MSH6: Family finds it hard to discuss cancer & feelings."
I'd also like to invite @danielad @elsie37 @jkh @rarelybees2889 @abartels @cindylb and others into this discussion.

First, I want to acknowledge your feelings of "enough already" and "no more doctors." It's exhausting. So often family and friends impose an unreasonable expectation on the patient to have strength and the ability to console or provide comfort. Largely that's because of fear. Fear of the unknown. Fear of loss. Fear of mortality. A cancer diagnosis throws you and them into a place that you're not supposed to have to face for years yet. You have to process as they do they. They may take longer.

Here on Mayo Clinic Connect, you can talk about anything and everything, speak about the tough stuff and the uncomfortable topics. We get it.

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Thank you

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@colleenyoung

Hi @ali1974, I hope you don't mind. I augmented the title of your discussion because I think this is a really good topic of discussion. Let me know if you agree with the title change "BRCA2 and MSH6: Family finds it hard to discuss cancer & feelings."
I'd also like to invite @danielad @elsie37 @jkh @rarelybees2889 @abartels @cindylb and others into this discussion.

First, I want to acknowledge your feelings of "enough already" and "no more doctors." It's exhausting. So often family and friends impose an unreasonable expectation on the patient to have strength and the ability to console or provide comfort. Largely that's because of fear. Fear of the unknown. Fear of loss. Fear of mortality. A cancer diagnosis throws you and them into a place that you're not supposed to have to face for years yet. You have to process as they do they. They may take longer.

Here on Mayo Clinic Connect, you can talk about anything and everything, speak about the tough stuff and the uncomfortable topics. We get it.

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Hi Coleen,
I apologize for the late reply, as mentioned I don’t always log on. Please feel free to change the subject I don’t mind at all. I had a CT Scan on Thursday to review my stomach, urinary tract and pelvic area. It showed abnormal bladder size and infiltrated fatty liver. I am a non drinker and non smoking. So I have the liver biopsy scheduled again for 10/21, which I mentioned in another discussion group of being terrified. I also have blood work done and sent to Myriad for additional genetic testing. As I mentioned I am already BRCA2 and MSH6 positive. I am terrified to see the new results. Is it common to test positive for several genes?
I was able to write my thoughts down and my family has read them. I appreciate them taking the time.

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I also would like to say thank you to everyone for your replies. I appreciate all feedback and take it in with a open mind.

Liked by trixie1313

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Do you recall a discussion group on genetic testing? I am curious if anyone is positive for more than one cancer gene like I am.

Kind Regards,
Alice

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@ali1974
Hi, Alice… When I had my genetic testing done last summer, they tested for the usual breast cancer genes, but also for the genes associated with ovarian and colon cancer in light of family members with those cancers in the past. I was amazed as to how many genes overlap the categories. I don't recall a specific discussion group here on genetic testing for breast cancer, but one of our moderators certainly will know.

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Thank you for your reply, I too was very surprised by the overlap. I will share my results once I have them. I was told it would be very unlikely that they would find anything else because it’s quite rare to have more than one. I believe they said less than 5%. I guess I should play the lottery lol!
I don’t mean to make light of it but at this point what can you do.

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@elizm

@ali1974
Hi, Alice… When I had my genetic testing done last summer, they tested for the usual breast cancer genes, but also for the genes associated with ovarian and colon cancer in light of family members with those cancers in the past. I was amazed as to how many genes overlap the categories. I don't recall a specific discussion group here on genetic testing for breast cancer, but one of our moderators certainly will know.

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@ali1974, there are several discussions about genetic testing for breast cancer here on Connect. For example:

– Genetic testing…does anyone have the CHEK2 gene mutation https://connect.mayoclinic.org/discussion/genetic-testing-does-anyone-have-the-chek2-gene-mutation/
– The math of invasive breast cancer risk for LCIS https://connect.mayoclinic.org/discussion/the-math-of-invasive-breast-cancer-risk-for-lcis/
– High Risk Mutation (ie. BRCA, ATM, RAD51D) https://connect.mayoclinic.org/discussion/high-risk-mutation-ie-brca-atm-rad51d/
– High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/
– ATM Gene Mutation and Care https://connect.mayoclinic.org/discussion/atm-gene-mutation-and-care

In these discussions you'll meet others like @elsie37 @sandyjr @ladylawdawg @corinneberg @marykaym63 @patsydanley

You may also be interested in this video with Mayo Clinic genetic experts
– Video Q&A about Cancer and Genetics https://connect.mayoclinic.org/webinar/video-qa-about-cancer-and-genetics/

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@colleenyoung

@ali1974, there are several discussions about genetic testing for breast cancer here on Connect. For example:

– Genetic testing…does anyone have the CHEK2 gene mutation https://connect.mayoclinic.org/discussion/genetic-testing-does-anyone-have-the-chek2-gene-mutation/
– The math of invasive breast cancer risk for LCIS https://connect.mayoclinic.org/discussion/the-math-of-invasive-breast-cancer-risk-for-lcis/
– High Risk Mutation (ie. BRCA, ATM, RAD51D) https://connect.mayoclinic.org/discussion/high-risk-mutation-ie-brca-atm-rad51d/
– High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/
– ATM Gene Mutation and Care https://connect.mayoclinic.org/discussion/atm-gene-mutation-and-care

In these discussions you'll meet others like @elsie37 @sandyjr @ladylawdawg @corinneberg @marykaym63 @patsydanley

You may also be interested in this video with Mayo Clinic genetic experts
– Video Q&A about Cancer and Genetics https://connect.mayoclinic.org/webinar/video-qa-about-cancer-and-genetics/

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Thank you, since joining the site I have been very impressed with the responsiveness. I appreciate everyone for being so open.

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