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Topic: Husband is not supportive

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Sep 30, 2019 11:04PM

millee_moo wrote:

I was diagnosed with a BRCA1 mutation 2 years ago. I’m not very big on risk so I’ve decided to have a prophylactic mastectomy as soon as I can (work means I have to wait a few more months). I’m ready and happy with my decision.

Unfortunately from the start my husband has been terrible about this mutation. When I was first diagnosed I hadn’t chosen to be tested (23andMe) and with no history of any cancer in my huge family I was totally blindsided. I was an absolute mess for a month. My husband told me I shouldn’t tell people because it was offensive to people with cancer how I’m so upset by it. He would hold me if I cried but wouldn’t talk about it.

He hasn’t come to a single appointment with me. He hasn’t done a single minute of reading on it. He won’t talk to me about it. When I have screenings he doesn’t ask about them and if I talk about it he changes the subject quickly. Recently he told me not to tell our friends about it because he was worried it would somehow get him fired because he might have to take time off to care for me (he has a normal office job with sick leave).

Lately he’s been pressuring me to not have the surgery because he says he’s not ready. He can’t articulate why he’s not ready or when he will be, but the best he can come up with is breastfeeding and he’s absolutely panicked we will both be fired (again both have office jobs with sick leave and FMLA). He said I’m rushing and that the risk isn’t that high right now (that’s true, but I don’t see the benefit to waiting) and doesn’t understand why they can’t “just cut the lump out” if I do get cancer. He also said he thinks I’m doing this partially to get bigger boobs and because my support group has all done it and it’s somehow peer pressure. He keeps sending me articles about breast cancer management in the general population as though it somehow applies to my situation.

I’m feeling really down about how actively unsupportive he is (not only ambivalent but taking actions to make me feel worse), it’s honestly making me question our whole marriage. Has anyone been in a similar situation?

BRCA1+
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Oct 1, 2019 02:48AM edj3 wrote:

I haven't been in your situation re the BRCA gene, but I have been in a marriage that had communication issues. Have you guys looked into marriage counseling? I highly highly recommend Gottman Method Couples Therapy.

Also I call BS on his weird idea that those of us with cancer diagnoses would be offended by you talking about the BRCA results. I'm certainly not offended, not in the least.

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 05:38AM Ingerp wrote:

How old are you? Are you planning on having children?

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Oct 1, 2019 05:53AM HopeWins wrote:

sounds like he's scared and maybe stuck in his own head about how this will impact him. If your friends don't know, the subject won't come up. If he doesn't go to your appts, he doesn't have to focus on it. If he changes the subject, he gets to push it out of his mind. Youre doing it for bigger boobs? Thats an odd one. Maybe he's afraid you'll leave him?

In his defense, there is FMLA and sick leave but I think you need to respect his desire to keep the info from his employer. He might have a good reason not to trust them. That's about all the benefit of the doubt I could give him.

Cut out the lump and then you're good to go? Seriously? If he wants to research BC and treatments, that would be awesome. If not, he needs to keep his Holiday Inn Express treatment ideas to himself. If you're resolute in your treatment decision (and there's no reason you shouldn't be), maybe you need to tell him this is happening with or without him. I know marriage issues can rock you and it's so disappointing to not get the support from the person who should be first in line. But remind yourself that you're strong, healthy, young and you can do this.

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Oct 1, 2019 07:25AM - edited Oct 1, 2019 07:30AM by Yogatyme

millee, you are right to be concerned about brca mutation. There is no breast cancer in my family but all my siblings, a niece and I all have BRCA1. At the very least you should be having close monitoring of breast health. I was doing that and my breast cancer was picked up on MRI but NEVER showed up on mammogram or physical exam. My cancer was caught early bc of monitoring. As for the comment that you can just get a lumpectomy, while that is true much of the time, the brca mutation puts the risk of recurrence at 85% for both breasts and bilateral mastectomy is most often recommended. I hope you will get connected w a good breast specialist and at least start the close monitoring. My niece had prophylactic mastectomy and she, my sister and I all had prophylactic oophorectomy and we have no regrets. Honestly, my only regret is not having prophylactic mastectomy. My sister is now scheduled for it since my breast cancer diagnosis. The irony is, I ended up w bilateral mastectomy anyway.Brca also significantly increases risk of ovarian cancer which is a “silent killer" bc by the time you have symptoms the cancer is usually quite advanced. If your husband would go w you to talk to a breast specialist he might see this through a new set of lenses. But regardless, this's is your life. Do all you can to have it be the best .....this is not a dress rehearsal. Sending good thoughts...

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Oct 1, 2019 08:38AM ctmbsikia wrote:

Are there women with the mutation that never got cancer? That would be my 1st question. I tested negative and just never read up on it.

It's good you are being monitored. It also sounds like 2 years is long enough. You've made a choice now, and your husband has not accepted that choice. It seems like with most men they don't worry about stuff until it happens. Thinking he would accept this decision if you were to be diagnosed with cancer? This is not a great thought process to have-in my opinion. If he's having issue with you being proactive now, I don't know how it will get any better after the surgery. I'm very sorry. Good luck to you, maybe he would agree to a few counseling sessions to see if you two can sort this out?

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Oct 1, 2019 08:39AM SuQu31 wrote:

millee, so sorry for what you are going through. I encourage you to do what you believe is best for you - make your decision, follow through and move forward. Your husband may be frightened in a way that he simply can't express and he is just avoiding this altogether by refusing to be informed. Let's hope that's all it is, because there is hope for positive change in that circumstance. I'm sorry he won't educate himself enough to fully understand what you are dealing with. I hope you have other people in your life who will be supportive and helpful, particularly as you prepare for mastectomy. You will need actual, physical assistance for a period of time. Find a support group, if that is your thing, or come here, for community, education, insight and virtual hugs from people who understand.

And you never know who may have been through something similar. I told a work colleague (we work in different firms and he was not close enough to know otherwise) why I had been out of pocket for several weeks. For me, it was important for people to know why I disappeared for a time. It turns out that his wife had been through prophylactic mastectomy and ovary removal for the BRCA gene mutation. He said, "I know all about drains." We shared a chuckle about that "fun" experience! I see him differently now, in a good way.


Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Surgery 12/9/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/19/2018
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Oct 1, 2019 11:54PM WC3 wrote:

As a person who has had breast cancer, I offer my support to anyone who is struggling with the emotional toll of being high risk.

To be completely honest, I have little patience for willful ignorance and probably would have gone off on your husband by now if I were in your shoes. Cancer is not a cyst that can always just be cut out and cauterized and that's that. Cancer can metastasize while the primary tumor is still microscopic. Being a cancer survivor can disqualify a person from immigrating or becoming a citizen of another country, disqualify a person from life insurance, and put access to health insurance in the U.S. out of reach.

The best way not to die of cancer is to prevent it from occurring to begin with.

It could be that your husband is just afraid something will happen during surgery, or maybe he does not like the idea of implants. I would choose my life over a spouse's breast preferences any day though.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Oct 2, 2019 12:50AM blue22 wrote:

In response to your statement that your husband says someone with cancer would be offended.... I have cancer, and the only thing I find offensive is his cavalier attitude about cancer... Of course you are upset. I hope he is just having a hard time dealing with this and hopefully counseling will help.

It sounds like your testing was done through 23 and me... Has your doctor recommended confirming the results?

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Oct 2, 2019 07:28AM - edited Oct 2, 2019 07:28AM by Yogatyme

The more I think about this the angrier I get. We all have to find our own path but I think I might tell your husband that until he makes the effort to educate himself about this his comments are not welcomed. When he says something, I would respond that his words are meaningless bc he's uninformed. I wouldn't yell, cry, etc bc too often we are then described as “hysterical" and are still dismissed. I realize this is what would work for me but I hope you'll find some solice in knowing that others feel your pain and it breaks our hearts.


Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Oct 2, 2019 09:29AM - edited Oct 2, 2019 09:30AM by blue22

I feel strongly that if your testing was done through 23 & me you should test somewhere else. With a very quick search I found a report of false positives by 23 & me.

Also, breast cancer isn't always found quickly enough to just "cut it out". The type of cancer I have (IBC) is always found at stage III or IV, and it requires chemo, surgery (Mastectomy) and radiation. There are reports of people with BRCA mutation and IBC, so there is the very small but scary possibility that you could get IBC.

I really hope your husband is acting out of fear of the unknown and he will come around. Maybe you can find a support group for family members where there is someone who can talk to him. Or else maybe you can find someone who chose not to have a prophylactic mastectomy and ended up with cancer, and regrets it, and would be willing to talk to him. Maybe talking to someone who has experienced what you are trying to prevent will snap him out of it.

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Oct 2, 2019 09:44AM Yogatyme wrote:

blue 22, I completely agree w all you said. As a BRCA1 carrier who chose close monitoring of breast health over prophylactic mastectomy and developed bc, I regret not having the surgery before and as I stated above, I ended up w bmx anyway and now facing other treatment choices that may have been avoided.

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Oct 2, 2019 10:40AM Rrobin0200 wrote:

this makes me absolutely furious and sick to my stomach. So what, he wants to wait until you possibly get it and then take off time from work for chemo, radiation and appointments? I wish I had caught mine, even though I “caught” it early!

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/31/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 2, 2019 11:01AM millee_moo wrote:

Thanks everyone for the responses! A little more background, I plan 100% to go ahead with the surgery. DH has said that he will support me in person and be with me every step, and that he wants me to have the surgery, he just thinks it's way too soon right now. Last night he admitted he's "just scared." My main issue is that for me, supportive can't be just taking care of me physically while emotionally disagreeing. It also turns out there's "a gene" in his family (they don't know what it is and won't ask). I talked to his parents about it and it turns out his entire family is extremely weird about the whole thing. No one wants to be tested. The only people who have been tested had cancer. No one else will even talk about the possibility. It's unclear if it made it to DH's side of the family, his grandmother's sister passed from BC last year after it came back a 3rd time and they decided not to treat aggressively given her age (almost 90). Her daughter got BC in her 40s. A cousin also got BC, fairly young. So I think that actually explains some of the weirdness, it must have rubbed off on him.

@edj3: We have looked at marriage counseling, he is EXTREMELY opposed to the idea. I've been trying for years! We have a pretty strong marriage otherwise, but communication can be a problem.

@lngerp I'm 30, we'd like children, otherwise I would have removed my tubes at least by now. As soon as we're done they're removing the tubes, with ovaries to follow closer to natural menopause.

@HopeWins I think he'd like to ignore it for sure. He said his only concern with my telling our friends (and I have told them) is that it will get back to his boss since some of our friends work at the same place he does. I know his employer and they are not spiteful, strict, or nasty in any way, his concerns are entirely theoretical. He's even said his boss is very flexible before. I can see his concern about MY employer getting upset (so I keep it secret from them until it's time for surgery) but not his!

@Yogatyme Thank you, I am currently in a screening program at a fantastic cancer center. I alternate MRIs and Mammograms every 6 months, transvaginal ultrasounds and CA-125 as well every 6 months, at least until my surgeries. I plan to go ahead with the mastectomy this year, tubes in 4-5 years when I'm around 35, ovaries closer to natural menopause. For what it's worth, he has stated he will support me in my decision whatever I do and will be there for me every step, it's just hard knowing in the back of my mind he disagrees and possibly even judges the choice. Luckily he doesn't offer this opinion unless I ask, but it's like a scab I guess I have to keep picking at it. He said he wants me to do it eventually, it's just too soon. I don't see the point in waiting and I won't.

@ctmbsikia Yes definitely, women can have the mutation and not get cancer. In some genes "only" 30% will get cancer and it's very dependent on which gene and family history. None of the models really work for my family history, but my specific variant of the BRCA1 gene has by far the highest breast cancer risk of any breast cancer gene (middle of the road for ovarian, around 35%). In my family my aunt is 71, has the gene, and has never had breast cancer. However she had her ovaries removed for other reasons at age 40, which dramatically reduces your BC risk. And yes, I suspect he would accept this easily if I had cancer. I think he struggles with the ambiguity of the whole situation.

@SuQu31 Thank you for the support! I live in a big city so I've been very lucky to find multiple in person support groups, some are pure support groups (like FORCE) and some have become my friends. It's been harder for me to discuss husband problems with friends because I've found complaining about my marriage to friends tends to just poison it from the outside, which I don't want to do. I think we have a good marriage otherwise! And that's cool having a coworker who just gets it! I actually have a suspicion my boss might have a gene, it sounds like she has a strong family history of young BC in her family.

@WC3 Thank you, yes I tried to explain to him why it's important to PREVENT cancer. No one he knows well has dealt with it, though his great aunt just recently died of it came back for a fourth time and they decided against aggressive treatment given her age (almost 90). I agree 100% I am not changing my plan, it's just hard when he's not fully on board.

@blue22 Yes it's a ridiculous attitude. I think since he's still young he hasn't seen how hard it can be. And yes I was tested by a genetic counselor to confirm! 23andMe was just the thing that prompted real testing. 23andMe can definitely have miscalls, I think the BRCA2 variant they test for in particular is often false.

BRCA1+
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Oct 4, 2019 03:44PM gretchy wrote:

Millie_moo you sound like you have a very good head on your shoulder. Your body. Your choice. Sometimes when we can't get the support from a loved one we have to seek other resources which you are doing. I'm proud of you. I hope your husband comes around. Sounds like a long history of fear and denial in his family so I guess his response is not surprising just disappointing. G-d bless you.

Dx 10/1/2014, IDC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 12/28/2014 Breast Dx 8/29/2019, ILC, Right, HER2- Hormonal Therapy
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Oct 4, 2019 06:33PM HopeWins wrote:

yes gretchy - proud of OP and all these strong women. Makes me want to play my Beyonce playlist on the treadmill tomorrow, lol! We got this ladies, or at least we show up... despite the fear!

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Oct 4, 2019 07:03PM blue22 wrote:

Maybe you can make a separate thread and ask people who tested positive and delayed mastectomy and regretted it to write their stories so your husband can see the possible consequences. Of course that will only be the woman who can still tell their stories.

I'm sorry but his attitude makes me really mad! You need to do this for yourself.

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/30/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Oct 4, 2019 07:28PM TB90 wrote:

Millee Moo: I have nothing of value to add except to say, that as such a young woman with such amazing composure, insight, knowledge and forgiveness, you will not only deal with this, but might actually lead the way for other young women diagnosed with bc. No pressure, just take care of yourself, but you are a natural leader and your experience will be valuable for others. You are simply amazing. Seek support from these amazing women. Hugs to you.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Oct 4, 2019 08:20PM Yogatyme wrote:

Millie, in response to blue’s suggestion about op’s stories, I am one of those women. I was dxed w BRCA1 last Dec and immediately scheduled a prophylactic oophorectomy but decided because there is no bc in my family I would do close monitoring of breast health. In July I was dxed w bc. Fortunately, it was stage1 and node negative. I had BMX and my only regret is not deciding to have prophylactic BMX last Dec. Of course, the cancer may very well have been there, but it would have been treated that much sooner. I admire your thoughtful considerations and mindful decisions about taking care of yourself. You have this!

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Oct 7, 2019 10:20AM wallycat wrote:

You sound like a brave and strong woman. Good for you. Reading your original post, it sounds like he is scared. Fear can make us say and do crazy things. For some people, it takes longer to process bad news. I'm so sorry you are having to deal with decisions; this isn't easy and I hope your DH will be able to get a grip to stand by your side and help you navigate this. It doesn't make him a bad person that this is frightening. We are all frightened by the thought of losing someone we love...he may have gone to the ugly place before realizing your steps will help lessen the ugly-place journey. Best to you both.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Oct 20, 2019 10:34PM Utahmom wrote:

Millie, I have Atypical Ductal Hyperplasia Associated with Calcifications as well as Mild Ductal Hyperplasia and PASH. I am waiting on my genetic testing results for BRCA and Lynch. I have family history. I have involvement of both breasts. I am 52 with a beautiful 8 year old boy. I love my little family and after reading all the studies out there, I feel like I have been leaning towards a mastectomy. Was it my first choice, no, but friends who have had lumpectomies and suffered relapses or those that have passed away, agree that I have a chance that they did not have.

As to your husband, I get it. Mine is scared and worried because it is a serious surgery and there can be complications. He also feels helpless as he cannot protect me from it. Sending love and hugs to you.

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