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When do I inform my family(child) and organize a support group?
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KimBliss posted:
My doctor gave me a book on how to prepare for surgery and advised me to get a support group through my family, friends, and/or church. I am still in the testing stages (I thought). I am beginning to wake up from the shock of cancer cells being in my body. Now that I finished my testing (PET scan and MRI) I have to meet with my doctor to discuss treatment options.

I did not tell anyone out of shock. I didn't want all of the questions to which I don't have the answers yet. I just wanted my stress level to remain low. So, do I meet with my doctor alone to discuss treatment options then organize a support group? Do I go for a second opinion? I know what to tell my child but when do I tell her? My plan is to wait until after Christmas so everyone is not doting over me and feeling sorry for me.
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judyfams responded:
Kim,
I am sorry that you have gotten this diagnosis during the holidays. My heart goes out to you - but you need to remember that you are totally in control of your treatment options.

First and foremost you must feel comfortable with your doctors and confident with the decisions you make. You must decide when and how to tell your family and friends about this - no one can tell you when to do this. I told only my best friend until after the biopsy was done and there was no doubt that I had breast cancer, then I told my family and friends. That worked for me and made me feel more comfortable, and your ultimate comfort level should be your guide in this situation - not what other people did or what you think you "should" do.

You did not mention the age of your child - and when to tell him/her and how much to tell him/her is important. Obviously you do not tell a 5 year old what you would tell a 25 year old. If you have a young child you might want to discuss how to do this with a professional. If you do not know a professional and your child is in school, I would contact the school and make an appointment with the school psychologist about how to tell your child.

You can most certainly go for a second opinion if you want - once again this goes back to your comfort level - you must trust your surgeon and feel comfortable asking him/her questions as well as feeling confident about his/her skills as a surgeon. So once again the choice of a second opinion is yours to make.

Meeting alone with your doctor again falls into your comfort level. You may want someone with you then bring them along. My suggestion is to make a list of questions and concerns you have and ask you doctor all these questions and write down the answers. I bought a little spiral note pad that I kept with me in my purse and whenever questions popped into my mind - I immediately wrote them down wherever I was.

Joining a support group is once again up to you and your comfort level. There are many support groups out there and if you are interested you can find one through the ACS, or google Gilda's Club.

It is normal to be confused and frightened - so do not be too hard on yourself at this time even though the holidays are here.

Take care of yourself and stay in touch with us.
Judy
 
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jenna291 responded:
So sorry to hear of your diagnosis. I too was diagnosed at holiday time 3 years ago just before Thanksgiving. My daughter was away at school and I waited until Thanksgiving night to break it to my kids. I had no choice as chemo was starting quickly, and I knew my hair woulsd start fall out.
There is no easy time to tell them, mine were a bit older, 17 and 21 at the time. Its hard on the whole family, but everyone stepped up t the plate the the kids actually inspired me to fight as hard as I could.
I had a friend who had gone thru this the year before me, and we started a breakfast group meeting once a month to discuss concerns, anger, frustration, symptoms, etc. It has been a wonderful help to us all.
A second opinion is always a good idea, make sure insurance will cover it. My diagnosis was stage II invasive ductal carcinoma, and since it had broken thru the milk ducts, chemo was recommended to avoid any "floaters" which might cause problems.
It is now 3 years past treatment for me, likes someone else's life now. It never really is over, but I do believe it gives your family, friends, coworkers a reality check about how precious life is.
Best of luck to you and please let us know what your treatment plan will be. You will be surprised at how many people will come out to support you.
 
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mfpruitt responded:
Dear Kim,
I am also sorry to hear of your diognosis so close to the holidays. I too was given the news of my second bout with breast cancer 1 day before Christmas in 2003. Although there is really never a good time to receive the news of cancer it does make it a bit harder during the holidays. My children were ages 10, 12 & 19 and I did wait to tell them until after the Chrismas holidays were over.
The most important thing is that you listen to your doctors and feel comfortable with them and whatever decision you make. Once you have a plan in order then you will be better able to speak with your family and friends. I also suggest finding a breast cancer support group to ask questions, who better to ask then actual women who have been thru this before. Be careful how much you read on the internet as sometimes it is out dated.
I wish you all the best and you to will survive!!
Mary
 
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ncsurvivor responded:
I'm sorry to hear about your diagnosis Kim. I too was diagnosed with breast cancer right before Christmas 5 years ago.
I would highly recommend taking someone to the doctor visits with you. There is SO much information coming at you, that you can't absorb it all even if you try to write it all down yourself. I kept a spiral notebook with notes on all of my MD visits, and wrote my questions there as well. I still take it with me to followup appointments.
Good luck and Godspeed.
 
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ncsurvivor responded:
I am sorry to hear about your diagnosis Kim. I too was diagnosed right before Christmas 5 years ago.
I would strongly encourage you to take someone with you to your MD appointments especially during these early stages. There is SO much information to absorb, that another set of ears, and someone to take notes really helps. I started a sprial notebook where I wrote my questions, and kept all of the notes from my appointments. I still take it with me to followup appointments.
Good luck and Godspeed.
 
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jensaramom responded:
I would not recommend meeting doctor alone to discuss options and future treatments because there is soo much information given out, it is difficult to remember. Unless you take notes, which I strongly advise.

Accept the doting --- it doesn't last forever -- and the breast cancer watching does.

My prayers are with you. There are excellent support groups online --

I agree - when reading articles on Internet check date of article. If it is not recent, it is mostly likely obsolete. This disease and its treatment is being researched mightily right now!!! God bless you all researchers and doctors. Thank you!
 
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LMaryT responded:
Dear Kim, I'm sorry that you are facing a cancer diagnosis. It's always hard enough to face that and then to be worrying about how it will affect others can seem overwhelming. I took a similar route when I got my cancer diagnosis. It worked for me in the situation, but it also made it very hard when the time came to tell everyone. Eventually, we all got past the initial shock and most of my family moved beyond their overly worried, overly protective behavior.

I agree with judyfams that you must decide what is right for you. There are no hard and fast rules. It is a very good idea to have someone go to doctor appts. to take notes.

Regarding the book about surgery and support group. Is your doctor suggesting the book, Prepare for Surgery, Heal Faster by Peggy Huddleston? or something similar?? My family first learned of this approach when my brother was scheduled to have surgery at Mass General. Part of the method in that book is to develop a support group to help you prepare for surgery including having your support group think of you during surgery and visualize the healing goals you have set. Also, to prepare a tape or play list to play while you have surgery (yes, even while you are under general anesthesia!)

At first I thought it sounded a little hokey, but then I found a good body of research supporting the idea of the mind-body connection and its influence on surgical outcomes. It was useful for my brother. Also, when my daughter faced a dangerous, lengthy, and bloody surgery, she prepared using that book. Her outcomes were excellent - everything she had visualized, including very little blood loss, much less than is the norm for that type of surgery.

Best wishes for good outocmes and fast healing!
 
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maryangel35 responded:
I also was just diagnosed with breast cancer just before Thanksgiving. I was grateful my surgeon agreed that I could wait until after Christmas for surgery, which is scheduled for Jan. 3. The hardest part for me has been telling my adult children and other family and friends. I have gotten a lot of support. Having a family Christmas to plan for (our first time in 3 years with all of us together) has helped me stay positive and not dwell on my situation. I have a wonderful primary care doctor who put me in touch with a breast cancer surgeon, a friend of hers, whom I really have confidence in. I will see her on Dec.28 for a pre-op. My greatest worry is having chemo. I hope I can have radiation alone.

I do not mind people doting over me (so far they haven't done that). I have done enough doting over the years with my own mother, family and children.
 
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KimBliss replied to jenna291's response:
Thank you so much for the encouraging words.
 
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KimBliss replied to mfpruitt's response:
My doctor also advised me thar internet information is outdated. I feel overwhelmed after reading the internet. I think a support group would be best for me. I am finding this site a very good place to start.
 
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KimBliss replied to ncsurvivor's response:
Thank you so much.
 
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KimBliss replied to jensaramom's response:
thank you
 
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KimBliss replied to LMaryT's response:
Thank you so much. My doctor gave the the book Prepare for Surgery by Peggy Huddleston. I only read the forward but after reading you response I look forward to reading the book.

I am very appreciative.
 
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KimBliss replied to maryangel35's response:
Maryangel35, I just said a prayer for you. I will have my surgery in January (date not scheduled yet). I am going for a second opinion the first week of January. I am praying that I don't need chemotherapy too. I'm waiting for the results of my genetic testing before my course of treatment will be decided.


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