How do you help someone cope with the unknown?

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nacole13
nacole13 Member Posts: 3
edited June 2014 in Caring for Someone with Breast cancer

Good evening all,

First off, I've been monitoring this message board for the past week. I want to say it's great to see how supportive everyone is of eachother. It's also great to see how informative everyone is. I found this site through "Dr. Google". I'm a chronic googler and like to Google everything so that I'm better prepared in situations like this.

Now for my story..... I'm 31 years old and in perfect health. I'm an only child. My dad passed away 20 years ago and my mom has been single ever since. Last July she was diagnosed with breast cancer in her right breast. She was 48 years old. Thankfully it was caught rather early as my mom has been great about getting her mammograms very regularly. She had a lumpectomy and some lymph nodes removed. The doctors felt very confident about her surgery. She had radiation for several weeks and was prescribed Tamoxifen. Since then she has been monitored very closely and seemed to be doing fine until a couple of weeks ago when her doctors said that her tumor markers were elevated. They recommended a CT scan and bone scan. The CT scan revealed a lump in her uterus. She was referred to a gyno-oncologist that she will see on the 2nd. She is still waiting for an appointment for the bone scan. Also, she had a mammogram which revealed another lump in her right breast. She will be having a biopsy for that tomorrow.

I plan to be with her at the gyno-oncologist appointment and at the breast surgeon appointment (once the biopsy results are back). After consulting "Dr. Google" I have a list of questions to ask. If she does have uterine cancer is it metastatic or a new primary? How do they know for sure? Can she have a hysterectomy instead of having a biopsy and then waiting (for her uterus) for the results? It seems like this is almost inevitable and maybe a good preventative measure. I also plan to ask her breast surgeon about treatment options for the possible cancer there. Is another lumpectomy possible? ----- The reason why I'm listing my questions is because I would like to know if anyone here as any insight or experience. I'd also like to know if there's anything additional I should consider asking.

As an added note.... In a phone call just an hour ago my mom dropped another bomb on me. She hasn't been taking her Tamoxofen for at least 6 months. She didn't like the side effects. The hot flashes weren't so bad but the mood swings were unbearable and quite scary. While I'm not upset with her about not taking it (whatever happens I want her to be comfortable - I'm way more concerned about her quality of life than quantity) I'm upset with her for not talking to anybody about it, especially her doctors. She doesn't want to tell her doctors (she's embarassed by how extreme her mood swings were) but I feel they should know so that all bases are covered. ------ Anyone care to share their insights/experiences on Tamaxofen?

When my mom was diagnosed last year I told her to not worry about what "could be" and to just worry about what "is". It's rather amusing I would give that kind of advice given that I'm someone who likes to be prepared and can't stand not knowing the outcome (in case that wasn't the least bit obvious from my post so far). I'm definitely trying to follow my own advice in this situation. What kills me, though, is that I know she's scared/depressed/worried and God only knows what thoughts are running through her head. I just feel so powerless in that I can't help her. Which brings me to my question.... How do you help someone cope with the unknown? Particularly when you have trouble dealing with it yourself.

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  • Lou10
    Lou10 Member Posts: 332
    edited October 2012

    So sorry your family is dealing with this.

    Can only write a quick message but wanted to say this ... if you are strong enough to allow your mom to express her fears, that might help. She may be holding back because she doesn't want to worry you more. Every one is different, but I didn't like it when loved ones tried to minimize my fears (I hate to admit that's exactly what I did with my dad, partly because I thought it would help him but in hindsight probably more because I couldn't deal with my own fears).  You sound like a wonderful daughter, and I'm sure you're already helping your mom. 

    Regarding tamoxifen, I went off it after about 9 months of hell. I took a month off with my oncologist's blessing and then switched to an aromatase inhibitor.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    I know this is a concerning situation for both of you and you are a good daughter to be worried about your mom and trying to help her.  First, the lump in the uterus.  Yes, she could have a hysterectomy but it is a major surgery, with its own risks and potential side effects, so I think it is important to determine if this is a cancerous lump or something benign.  I believe that something in the uterus would be considered a new primary cancer, unless it is determined to be breast cancer metastasis on biopsy.  It would be prudent to have a biopsy to determine what the lump is before determining any treatment.  Do you know if your mom had a baseline pelvic ultrasound prior to starting Tamoxifen?  It is a drug known to cause thickening of the uterine lining so there is potential for a link.  She also really needs to inform her docs that she has not been taking the Tamoxifen and tell them when she stopped.  This is important information in light of her current situation, and believe me, she is not the first patient to be non-compliant - they will not be shocked, but they need this information.  Second, the lump in the breast.  If it is another cancer I don't think they could do another lumpectomy because they have already radiated that same breast.  If she does have a recurrence of the same cancer in the breast I think they would recommend a mastectomy.  Hope this helps and I wish both of you the best.

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  • nacole13
    nacole13 Member Posts: 3
    edited October 2012

    @Lou: That is very great advice. I think we tend to not want to worry others in need (and ourselves) so we try to be dismissive. I'm very guilty of doing that even though I don't like when others do it to me. 

    @SpecialK: I'm not sure if she had an ultrasound. I kind of don't feel like I was with her known during her initial diagnosis. I really regret that, especially now that she told me stopped taking her Tamoxifen. Love my mom but sometimes she isn't the best at asking questions which is understandable considering what she's going through. She did speak with her general doctor the other day who says, based on the test, it looks like the lump in her uterus might be a fibroid. Don't worry, he doctors will know about her not taking the Tamoxifen. I told her that if she doesn't tell them, I will. :) I will support her in ANY decision she makes about her body but I refuse to let her make an uneducated decision. I understand a mastectomy will probably be needed if the lump in her breast is cancerous. That will be another bridge to cross. She wasn't happy with the idea that a mastectomy might have been needed the first time around.

    Thank you both for your responses!

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