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InWest
InWest Member Posts: 4
edited June 2014 in Caring for Someone with Breast cancer

I posted this elsewhere and did not see the family section. Any advice is welcome!

We got the news on May 18th that my wife's self-found lumps were cancerous. They were multi-focal one being IDC and the other was in situ. They were removed by a surgeon thinking they were benign because she is 30 and there is no history in the family and she does not drink, smoke or even swear (until now she swears) on the 13th of May. After they were removed and found to be cancerous we were directed to an oncologist. He ran through options as far as lumpectomy and such. My wife opted for a double mastectomy with reconstruction which we had done last tuesday the 19th of June. They did the surgery along with a sentinel node biopsy and installed a chemo port also. During the 5 hour surgery, the anesthsiologist came and told me that there was no cancer in the sentinel node. After the surgery and the consultation with the surgeon he said there is  a 99.9% chance that the pathology is  correct on the absence of cancer in the nodes. Well, just got the call today that cells were found in one of the two nodes biopsied. We still have no staging of the cancer and just scheduled an axillary node dissection for friday. We live 90 miles from our oncologist in one direction and 100 miles from our surgeons in the other direction. I am wondering if this is normal treatment? She has been riding the rollercoaster of good news going to bad over and over. It is taxing on her. I am handling it but it is starting to break me down seeing her go through this. I am strong and helping out in every imaginable way and will continue to do so. When are we going to get some results? The waiting on the tests and getting the hopes up is draining. Now I am concerned about the lymphadema from the ALND. Anyone out there in this predicament? I am isolated and these boards are my only solace. The BRCA tests were negative. HER2+, ER+ and PR-.

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  • Letlet
    Letlet Member Posts: 1,053
    edited June 2012

    Hello, InWest. I am not in your same shoes but just wanted to respond. I was 31 when I was dx with BC and yes it was a rollercoaster. One constant force, one rock that remained steady despite good or bad news was my husband. He stood by my side for each appointment, each dose of chemo. I would say goodbye to him just before surgery and his face would be the second one that I would see (after the nurse) after surgery. Be your wife's rock and from what I can tell you are already an awesome husband.

    There are some studies out there regarding ALND (to do or not to do) but I think it is relative to early stages and/or tumor size. I did not qualify because my tumor was large. Your wife is already at risk for lymphedema because of the node biopsy. 

    I know what you mean about good news bad news. After surgery I was glad that it was out, when we went to our follow up appt I was told that I would need radiation, something I was told that I would not need if I had a mastectomy but I needed it now because I had 6 positive nodes. I remember crying my eyes out and my husband just holding me. Honestly it always made me feel better.

    I wish you both the best. Its so important to have a strong support system and I'm glad your wife has you.

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  • Letlet
    Letlet Member Posts: 1,053
    edited June 2012

    PS. I am 33 now and feeling good :)

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  • FilterLady
    FilterLady Member Posts: 407
    edited June 2012

    Hi Inwest:

    Letlet is right.....the best thing you can do for your wife is to be her rock!  She'll let you know if she wants to talk, scream, cuss, throw things, etc.....She'll certainly have meltdowns.....I think we all do.

    Please let her know about these boards.  The women (and some men) here will give both you and her encourgement and will be here no matter what happens.

    I'm not known for my patience and I just wanted to get a plan together and get started so I could get finished.  My DH says I'm the bravest person he knows....that's really not true.  I just knew and still do that I intend to be here to embarass my 4 grandchildren at their weddings (they are 3, 4, 5 and 8).

    Your wife will come to realize that she has strength she didn't know she had.

    I'm praying for you both.  Please continue to keep posting and let us know how y'all are doing.

    God bless you both,

    LaDonna

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  • InWest
    InWest Member Posts: 4
    edited June 2012

    Letlet, glad to know you are feeling good now and thank you for the reassuring words! LaDonna, thank you for the encouragement and I will be sure to keep the updates coming on this thread because I don't know what the results will be. Waiting game again. She is freaked out about the lymphadema right now and worriying that she is swollen now. Fingers crossed for Friday and if I have to hear "99.9% sure" again I might lose it. It's like that commercial running now, "if you're not 100% sure, then you don't know". Thank you both, I hope your lives stay positive.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    InWest, swelling would be perfectly normal for your wife this soon after her surgery. Reassure her that MOST women never get lymphedema, even with an ALND.

    There's lots she can do to reduce her lymphedema risk. Here's information about that might help you both think more positively about it:
    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    And here's how you can find a well-trained lymphedema therapist near you.
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    S/he'll need a referral for evaluation from any of the doctors on her team. The therapist will take baseline arm measurements for future reference, give her personalized prevention tips, and teach her a gentle self-massage she can use prophylacticall. All good!

    Be well!
    Binney

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