Helping someone that was just diagnosed

auroraborealis
auroraborealis Member Posts: 2
edited June 2014 in ILC (Invasive Lobular Carcinoma)

My mother, a 49 year old marathon runner in the best of shape, has just been diagnosed with ILC. She is finding it hard to understand, and is really searching for others to help her out.

 So, I was wondering what the best advice to her would be? Any tips on how to make it through the waiting period - she's been diagnosed, has had an MRI, waiting on an ultrasound to decide on the course of treatment - or how I can help her through it? What helped everyone here? 

Also, I have been toying with the idea of setting up a mp3 player for her with a bunch of upbeat and inspirational songs to help her throguh chemo or radiation. Any suggestions?

Thank you so much... Finding a forum filled with survivors and women currently battling has been such a help for her and for me. 

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  • Jani_
    Jani_ Member Posts: 90
    edited October 2008

    Hi Aurora,

    I was dx Feb 2007, had mastectomy, chemotherapy and radiation. Currently, I'm waiting for reconstruction, which will happen in November (yay!).

    I can still remember those early days, everything seemed so confusing. There's so much to consider, questions, decisions to be made. It can all become a little too much.  

    You may want to get her a notebook and pen to take with to all appointments. It's also useful for making notes of questions to ask at the next appointment. As there can be an information overload, it's good to be able to go back and read the notes.

    What helped me through the rough year, was taking it one day at a time. Not looking ahead at all the "what ifs", but really just focus on the task at hand, being: getting through treatment!

    All the best to both you and your mother. She is very lucky to have a daughter like you to help her through this.

    God bless,

    Janine 

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  • ittybittyme
    ittybittyme Member Posts: 9
    edited October 2008

    I am currently going through chemo and have several months of treatment ahead of me. This is the hardest part-the waiting. It will be some time before she knows her staging. The best thing you can do now is just be there. Help her clean her house, just do it don't ask. Try to keep things normal, make her laugh if you can, and show concern but don't make visits all about the cancer unless she brings it up. When you know the treatment plan and if chemo and radiation are part of the treatment be her "ride" to dr. appts and treatments if you can. She won't be driving at this point. My aunt gave me a book "Living through breast Cancer" by Carolyn M. Kaelin, M.D,M.P.H. and it has been invaluable to me. Very laymen and easy to understand-get a copy for both of you. Contact the American Cancer Society- they will send valuable information, a notebook/file, and many other free sevices. Of course you will find invaluable links here also-this is my favorite site. Check out links for family, coping w/chemo side effects, etc. Everyone is different so what applies to one may not apply to her. Get as much info as you can on her type of cancer so you know whats going and can folllow what the Dr. is trying to explain and write down questions before you go. The more knowledge you have the more you can help. Good luck to your mom and bless you for this will be difficult. Keep your sense of humor and be strong. I know right now this isn't funny at all , but humor sure has kept me going! I don't want pitty. If she feels well let her be active. It's cancer not a spinal injury...lol. Take it one day at a time and adjust your help along the way. Hope this helps.

    Laura

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  • auroraborealis
    auroraborealis Member Posts: 2
    edited October 2008

    She is still incredibly active, still running 5-10kms per day and an huor of swimming laps. I found a book for her called 'Just get me through this' and she really seems to be enjoying reading it.

    It's just so hard not knowing what's going to come next! They're estimating the cancer as being about 1.4cm,invasive lobular carcinoma, with some lobular carcinoma insitu around it - without any activity in the lymphnodes. It looks like she's going to have the option of having a lumpectomy and then radiation, or a mastectomy and chemotherapy. The result of the MRI she had last week and the ultrasound she has next week are going to decide the full course of treatment.

    It's hard not knowing what to say or how to act. I flew home to see her last weekend and we spent some time out in the country like my family loves to do. She's keeping her sense of humor, I've found that her cancer is just making her more rowdy - if anybody says anything to her, she'll just look at them and say "tough, I've got cancer", and then just keep on going. 

    Unfortunately I don't live at home anymore. I'm able to travel back about once a month, andwe're keeping in contact over the phone, and also through video calls over Skype.

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited October 2008

    Doing a notebook to keep all her copies of reports/test in would be a great idea IF she hasn't already gotten one.  Our clinic gives each patient one at the pre-op class with resources, and such in it.  American Cancer society(here) also gives out a book called Dr. Susan Love's Breast Book.  Invaluable book for me and I still refer to it when I have questions.  There's another edition due out, but I'm not sure when.

    There are also great resources for other things if you can't be there and she needs help through the local chapters of cancer societies and even visiting nurses and cleaning services in some areas.  Depends a lot on where you are. 

    Does she have someone to get to treatments? Does anyone go with her to appts?  IF not, suggest she take a tape recorder, b/c we often miss things said, b/c we either are new to the jargon, or b/c our brains are thinking about something just said and absorbing it and miss the next thing, which can be important, so a recorder allows her to relisten to those things at home and understand them

    Does she have internet?  Send her here.  The best resource is those who have been through it and I Swear, this is the most informative and support group she'll find anywhere!

    Good luck to her, prayers for her decisions and treatments and peace in getting to that point where she has a plan and start moving forward to being healed! :D

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  • Kleenex
    Kleenex Member Posts: 764
    edited October 2008

    I sent you a private message as well, but I wanted to add a couple of things -

    The beginning part was perhaps the worst for me - dealing with the diagnosis, waiting to find out the results of the various tests to see what, exactly, we were dealing with, and especially making the decisions about local treatment. The lack of comprehensive information specifically about ILC is frustrating - it's just lumped in with IDC.

    I actually enjoyed the distractions of normal life - things like your trip to the country. I couldn't deal very well with people who were too nice to me, or who looked at me in this sad sort of way, like I was going to be dead soon. My family has an inappropriate sense of humor, and it was very helpful to me. Take her lead - if she doesn't seem to want to discuss it, don't, and if she does, let her talk. And if she seems committed to a course of action, be supportive, unless it is truly off-the-wall and dangerous. There are so many choices here, and no way to truly predict which might be the right one, so you need to feel as good as you can about what you choose.

    Two helpful books I read, in addition to the ones mentioned above, were "Five Things I DIDN'T Learn From Cancer," written by a very smart-alecky woman, and "Pretty Is What Changes," about a young woman who opted for bilateral mastectomy when she tested positive for the BRCA gene. I found that reading these women's personal experiences helped me define what I wanted for myself

    Also, "Breast Cancer Husband" was a good book. My husband has been amazing, but I must admit HE did not read this book - I did. It provides an honest look at what someone dealing with breast cancer might be experiencing, and how a supportive, close family member should respond.

    Do NOT let her read a book co-authored by Rosie O'Donnell and another woman. Can't remember the title, as I have blocked it out of my brain. It was a bizarre combination of serious breast cancer information with really inappropriate jokes by Rosie on every page. I love humor - it's my best life tool - but this book was truly inappropriate and not funny.

    Also - "new" developments in breast cancer treatments are newsmakers, especially during Pink Month. Before deluging your mom with "this just in" items, ask her if she's interested in reading about them. cnn.com is generally not the place to find out about things that will help her right now - often what's discussed is either old news, contains slanted statistics or similar misleading information, or, worse, details a promising new idea that won't be available to the public for years to come.

    Good luck!

    Coleen

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  • Rio
    Rio Member Posts: 38
    edited October 2008

    I cannot tell from your post if she has had a biopsy. I was diagnosed with ILC and in situ in July and opted for a bilat with immediate reconstruction. I am 48 and very active also so this was quite unexpected. Because I have had 4 biopsy's in the past I knew that lobular can go from breast to breast my decision to have the bilat was not a difficult one. My past 3 biopsy's show lobular hyperplasia. My final patholgy report had no lymph node involvement but did show a small spot of ILC on the opposite breast also. My onc sent my tumors in for the Oncotype test which helped decide my course of treatment. This is a most difficult decision for all women and there is no right or wrong one. My best to you and your Mom as you travel down this road. Since my diagnosis these boards have been a tremendous support and a place to get advice from others that are in the same situation.

    Rio

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  • spar2
    spar2 Member Posts: 6,827
    edited October 2008

    Here are some things that helped me.

    1.  a gown that buttoned or snapped down the front

    2. an eggcate mattress put on my bed

    3. a body length pillow

    4. a chemo bag, my daughter made me one to use on chemo days with a book, some crackers, or other snacks, some hand cleanser, a joke book or crossword puzzle book, a new magazine

    5.  a couple of shirts that opened down the front.

    6. slip on house shoes to wear around the house

    7.  Also a very small pillow to rest elbow, or after surgery protect from seat belt.

    Just a few suggestions and I am sure there will be more.

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