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Worrying about future - need to vent

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hopefulldad
hopefulldad Member Posts: 5

My wife, and mother of our two young kids (3 and 6), was diagnosed about a year ago and we went very quickly from small (1cm) Stage 1 disease to a more uncertain situation with LVI, a couple of microtumors in the margin, positive LNs. This all came in follow up phone call after an initially upbeat assessment right after surgery (LNs appeared negative...). She's gone through scans and there's always a little something to worry about but unclear enough to change plans. She's gone through AC+T, radiation, now hormone therapy. Battled everything and does her best to stay upbeat. She struggled in the first couple of months but has definitely found a way to cope. She is strong and has dieted and exercised so much that she is as fit as she has ever been.

I've had more trouble and if I'm not worrying about her latest strange scan result, I'm having my own health anxiety because I fear the possibility of leaving our kids without either of us. I have been feeling like the next shoe is always just about to drop.

Just in the last week, she discovered a small (<1cm) circular pinkish discoloration on her affected breast. Looks a bit like a bruise but so small and not in likely bruise area. I've spent a lot of time looking at the literature and it seems very possible. She hasn't been seen but a biopsy is ordered.

It's just so hard to imagine that this could be the turning point and I feel like she will be hit hard by this and I will need to stay strong. And I really question my ability to do this and lack a strong social network. I have just started therapy to deal with my anxiety but don't expect this to be a quick fix.

I've read comments here and found some good advice. I'll keep doing that and will make it a priority to be there for my wife. Part of my struggle is that she wants to keep everything a secret from as many people as possible until necessary, and that includes our kids. I just can't imagine how that would go but will do whatever is needed (therapy, groups) to help them adjust if things turn for the worse.

Thanks for reading. I just haven't had much opportunity to share my worries and wanted to see if this would help me get my head straight.

Comments

  • moderators
    moderators Posts: 7,903
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    Hi Hopefulldad and welcome to Breastcancer.org,

    We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our amazing Community a wonderful source of advice, information, encouragement, and support -- we're all here for you and your wife!

    We know it can be nearly impossible to not jump to conclusions after receiving an original breast cancer diagnosis. However, please to remain calm and positive while your wife waits for her biopsy results. It's very possible it's nothing at all to worry about!

    Please keep us posted with what you find out. We're sending good thoughts to you both.

    --The Mods

  • dadof3ohio
    dadof3ohio Member Posts: 1
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    Hi Hopefuldad,

    I've been there and continue to be there with my wife through her treatments that have spanned two years. I also lacked a strong social network to provide support and felt that a therapist was helpful. I saw someone for a few months before recently moving my whole family 1000 miles. We have not stopped living life to the fullest and have prioritized getting my wife the best care possible. My spouse is stage 3 and had a huge tumor along with lots of nodes positive. None of it has the greatest prognosis but there are many on these boards that show that the prognosis is very individual and nothing is in a straight line. I encourage you to take care of yourself kind of like the "put your mask on first" for an airplane ride and just keep pushing forward. I have a few health issues myself and worry god forbid something happens to both of us. My answer was to quickly buy up as much life insurance as I could afford since my health doesn't have any restrictions like my wife. If we had known what was coming perhaps we would have done that with her as well. Unfortunately, a cancer diagnosis takes away a lot of options in terms of financial safety nets.

    Hope you're doing well and things are going well for your wife.



  • mswife
    mswife Member Posts: 66
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    Hi Hopefuldad,

    Glad you found this forum to post to and hopefully feel supported. I can very much empathize with your story.

    It’s so hard to not think of worst case scenarios - I think it pops into my head every day and we’re 6+ months out from my husband’s diagnosis (also stage 3 with lymph node involvement). I’ve run the gamut of feelings, but seem to have settled into things a bit more recently.
    I’ve also seen a counsellor and I think the most helpful thing to come out of talking to her and following posts on this forum is that no one has any idea what the future holds. It could be a cancer diagnosis, or an accident, or any other event. Someone mentioned to me the idea of grieving things multiple times - while you’re imagining everything that could happen, and then again if/when it does happen. It’s complete torture to worry about the ‘what if’s’, and I’ve started telling myself exactly that when my brain starts taking me in the wrong direction - that I don’t know what’s going to happen, what the future holds, live in the now, etc. There are many positive stories of long term survivors (even with advanced disease) and there’s no reason right now to think that can’t be our loved ones!

    The silver lining about this diagnosis (for us) is that my husband and I have been able to take time off together to enjoy each other, and our relationship is much better for it. I know I’ve realized how unimportant a lot of things are in the grand scheme of things. We’ve both re-evaluated our priorities in life and decided that we’re going to live it up with whatever time either of us has left!

    Please don’t hesitate to reach out if you need someone to talk to at any point!

  • hopefulldad
    hopefulldad Member Posts: 5
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    Hi Dadof3Ohio -- I really appreciate your thoughts. It's been tough -- we had several pending tests that all worked out well but just like that there is a new blood test that has put us back on our heels. I've been going to a therapist and felt like I was making progress but had a major setback and let my own health anxiety get the best of me. I realized today -- after getting my own bloodwork -- that I really can't trust my judgements at all about my health, or probably the health of my loved ones. My thinking and perceptions are distorted on this topic, at least just enough to make them useless. I have to find a way to be an attentive and responsible father and partner but leave the medicine to the doctors. I feel so bad for putting my wife through my own imaginary health problems when she is the one who has a much more serious threat. Each moment of relief for me puts her situation back in her head. I don't think I'm nearly this selfish in other parts of our life -- but this anxiety freezes me in my tracks and makes me feel that there is no hope. I'm sure I just came into this with some heavy anxiety baggage and it will make my process a challenge. I've definitely got a better handle on some of it. Thanks again!

  • hopefulldad
    hopefulldad Member Posts: 5
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    Hi MSWife,

    Thanks for the kind and reflective words! I'm trying to live in the moment as much as possible. It's embarrassing but it seems to work better when I've tried to stop worrying about my wife than when it's about myself. It sounds selfish -- and is to some degree -- but I think it's more about my feelings of responsibility. It's easier to accept that I'm not going to personally cure my wife by worrying. But when it comes to myself, I think 'what if I ignore a symptom and miss a chance to stop it -- for my kids." I suppose it has to do with how much time my wife and I talked about what might have prevented her BC. And my own guilt about being so irresponsible with my own health and planning. So now it seems whenever there's an opportunity, particularly regarding my own health, I throw myself into full worry-mode, confusing that with being responsible. But it's not enough to understand this for me. I have to find a way to put it in practice.

  • vidal1993
    vidal1993 Member Posts: 60
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    Hi HopefulDad:

    I too would like to offer my support and encouragement and share my story.

    In June 2019, my wife was diagnosed with Stage 2A breast cancer with lymph node involvement (Tumor Grade 3), and simultaneously diagnosed with thyroid cancer. She also has other medical problems, including Type II diabetes, high blood pressure, and anxiety.

    Since her cancer diagnosis, she has undergone 2 surgeries, chemotherapy, and hormone therapy. We have 2 daughters aged 8 and 6.

    You mention guilt about a breast cancer diagnosis. I share that. My wife and I started our family late, and she took progesterone to enhance her fertility. Apparently, that increases the risk of breast cancer.

    I can honestly say the last 2 years or so have been the most difficult of my entire life. When she was diagnosed, I had to assume essentially 3 full time jobs: the role of full-time caregiver and dad while working full-time as a lawyer. We have some family support from my parents, but COVID complicated that. My wife's own mother died of the same cancer she has so you can imagine the anxiety that has caused her.

    The one thing I regret was not realizing just how difficult this was going to be at the outset. There were times when I still worked a little too hard at work, thinking that I was helping by bringing in income. I pushed back at work, but not hard enough. There are times when your wife just wants you to be there for her.

    When COVID-19 struck, my wife's 2nd surgery was delayed and the level of tension and anxiety in our house was off the chart.

    Throughout, I have drawn on my strong Christian faith. But at times, I felt I was going to break down.

    I echo the posts on this board that recognize the futility of worry.

    We never know what tomorrow will bring. I live life with a little less fear and concern about all of the little things. I also recognize what a short time we are all here for--these may be some of the benefits of the diagnosis.

    As I write this, we are waiting for test results as a nodule has been spotted in her left lung. I will be trying to live in the moment, but we know how hard that is.

  • hopefulldad
    hopefulldad Member Posts: 5
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    Hi Vidal




    Thanks so much for sharing your experience. I wish you and your family the best luck with everything! Sadly, I know I’m not the only one going through this and at some level I know other people are having similar doubts and worries, but it makes a big difference to hear these thoughtful comments. I’ve really spiraled a bit in terms of my own health anxieties and I’ve decided to get a bit more intensive help and try medication. I was hoping to avoid these things but I’m more concerned with getting a handle on things. I’ve been so worried about my own health and how it could affect my kids. But I’ve been ignoring how my excessive worrying is already taking a toll on them, and my wife, and on me of course. So I need to accept the uncertainty and enjoy each day - what you all are saying! But I’m going to need a bit more help than just this realization, unfortunately. My anxiety issues are just a little to powerful at the moment. I actually feel a lot better making the decision to get more help for my anxiety problems. This is the best thing I can do for my family at the moment. I suspect it’s a pretty common problem for partners with cancer and I encourage anyone grappling with these issues to try get help if they think they can use it.
  • vidal1993
    vidal1993 Member Posts: 60
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    Hi HopefulDad:

    Great that you are able to acknowledge the need for help and get it. You are right--it is a significant moment when you decide to get the help after thinking about it for a period of time.

    My wife's cancer has caused me a tremendous amount of anxiety, and I wear it on my sleeve. I've reached out to a few friends, but I am finding now 2 years in that people aren't as interested or sympathetic as they used to be. They just don't get it. Some of my extended family members have even wondered if my wife really is experiencing the pain she goes through.

    I am sure that my girls can sense my concern sometimes. They don't say anything--we learned that children are very good at hiding their fear and "shielding" you from their emotions. But we found that that one of our kids confided to her friend about how frightened she was.

    Still waiting until November 8 when my wife can have her CT scan on her lung. At least we will know if it is anything to worry about.

  • edwards750
    edwards750 Member Posts: 1,568
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    Vidal/hopeful dad - so sorry for you and your families. Sometimes we forget how hard the BC DX is on the spouse.

    Vidal - I had multiple modules on my lungs about 5 years ago. I had gone to the PA because my shoulder hurt. I had been carrying around my twin grandsons so I figured that was the cause. The PA orders a chest X-ray and discovers the modules and promptly freaks out although she said it could be scar tissue. I had had 33 radiation treatments.

    Anyway apparently lung nodules are commonplace so I tried to stay calm. My PA advised me to go back to the cancer clinic to be tested. I said I would wait for the radiologist’s report. She said he would agree with her. He didn’t. All okay. Hope it is for your wife too.

    Diane

  • vidal1993
    vidal1993 Member Posts: 60
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    Edwards750:

    Thanks for your reassuring message. I expect it will be nothing waiting is on fun. November 8 is the test.

    Yes it is hard for caregivers. But if the experience has taught me anything it is how pointless worry is. So much is beyond our control in life. So I try to be a little happier and smile a little more.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    Vidal,

    That is a lesson that will serve you well throughout life. Worry cannot change the past nor influence the future but it can make today miserable.

  • hopefulldad
    hopefulldad Member Posts: 5
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    Vidal,

    Sorry about the delay, and thanks for your comments. I am glad you are taking this point of view. I am trying as well and have had some periods of calm. I will keep working on it. And I wish you the best!


  • moderators
    moderators Posts: 7,903
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  • vidal1993
    vidal1993 Member Posts: 60
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    Thank you exbrnxgl! We are waiting for the results of the November 8 CT scan. We meet with the oncologist Monday the 22nd. My wife is pretty calm thankfully.

  • alicebastable
    alicebastable Member Posts: 1,939
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    vidal1993, Why are you having to wait so long? The results should have been posted to your wife's portal as soon as the radiologist read them. BTW, I'm another one with lung nodules. They just sit there and don't bother me. My oncologist said a lot of people have them but don't know it until they start getting scanned for other things.

  • minustwo
    minustwo Member Posts: 13,077
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    In October my PCP recommendec a low dose CT that showed lung nodules. When my pulmonologist did the review he said they were similar to what was there after treatment & no worries.

  • vidal1993
    vidal1993 Member Posts: 60
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    Thank you Minus Two and Alice Bastable for your comments and replies. Hopefuldad hope you are okay.

    We got the results of the CT scan and it showed "post-radiation" changes in the right lung, as well as stable tiny pulmonary nodules "that are likely benign." Also a nodule in the left breast that is "stable compared to prior and likely correlates to nodule seen on the recent chest x-ray."

    And then, "diffuse infiltration of the liver with an irregular enhancing lesion in the dome that is "non-specific."

    So my wife will have another CT scan on her abdomen (liver) on December 21.

    I don't know what to think.

    My wife was diagnosed with fatty liver back in 2011.

    Don't really know what is going on.

    I guess we will find out.

    My wife is also a Type 2 diabetic, and takes medication to reduce the risk of heart attack due to high blood pressure.

    Any thoughts or comments are welcome.


  • minustwo
    minustwo Member Posts: 13,077
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    OH Vidal - hope this next scan comes out OK. FIngers crossed.

  • vidal1993
    vidal1993 Member Posts: 60
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    Thank you so much.

  • alicebastable
    alicebastable Member Posts: 1,939
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    Vidal1993, Keep in mind that different radiologists use different wording and focus on different things when reading scans. I have a rather large hernia that some radiologists note on my scans and others ignore completely. I have a splenule (a non-functioning spleen mini-me) that my oncologist said I've probably had all my life, but was never mentioned until this year although I've had fairly frequent scans for over 3 years. My fatty liver has been described in various ways and sometimes not mentioned at all, plus a few other liver passengers. I have, apparently, two aneurysms, one I was told about when I got my kidney cancer diagnosis three years ago, and the other one has only been mentioned on scan reports this year - and so far my doctors haven't said a thing about it, so I assume it's just sitting there and not a problem like the first one that gets monitored.

    The new scan that's been ordered for your wife might be to just take a closer, detailed look at the liver to have as a baseline for future scans. The other report would have been on the edge of the chest CT and possibly incomplete or slightly distorted.

  • vidal1993
    vidal1993 Member Posts: 60
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    AliceBastable:

    Your last post gave me much needed perspective. Thank you.

    Earlier this week I was certain this is a sign of Stage 4 but there may be many reasons the scan has been ordered.

    Can only wait until December 21 now.

  • alicebastable
    alicebastable Member Posts: 1,939
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    CT scans are used for a TON of things besides cancer diagnoses.

  • vidal1993
    vidal1993 Member Posts: 60
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    Thanks Again.

    I take my wife for her Lupron shot tomorrow, and then we wait until the 21st for the scan.


  • vidal1993
    vidal1993 Member Posts: 60
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    My wife is being investigated in order to rule out a possible recurrence.

    I have now had a chance to review the recent CT scan on her liver.

    The results indicate:

    "Lesion of concern ..like represents a flash filling hemangioma stable since 2019"; and

    "Increased background liver steatosis with areas of sparing. Several additional round hyperdense areas may represent focal nodular sparing however focal lesions should be excluded."

    An ultrasound has been ordered and is pending.

    My own internet research indicates this doesn't say much, other than the investigation is still continuing.

    Anyone have any thoughts. comments or experience?

  • alicebastable
    alicebastable Member Posts: 1,939
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    Steatosis is fatty liver, super common. I've got one. Sounds like they just want another look to rule out anything else.

  • vidal1993
    vidal1993 Member Posts: 60
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    Thanks Alice for your comment. I think these are precautionary tests. Ultrasound next week.

  • vidal1993
    vidal1993 Member Posts: 60
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    My wife got the results of her ultrasound back. Apparently, the liver steatosis is so severe the doctors have ordered an MRI to evaluate the liver parenchyma.

    Hope this is all about nothing!!