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Just Diagnosed

akpatterson
Posts: 12
Joined: Feb 2001

I was just diagnosed with "infiltrating ductal carcinoma". I'm struggling with how to tell my 15 year old son and my 68 year l parents. Of course the decision of treatment is also a new and frightening world I have just entered. Any suggestions?

kmedeiros
Posts: 7
Joined: Feb 2001

Hi, I'm new to the group too. I was diagnosed in September with infiltrating lobular and ductal carcinoma in situ. I've been in treatment since then, surgery and chemo with radiation to go. I guess there is no "best way" to tell news like this other than sitting down with them and explaining what the diagnosis says, and how you feel about it. I got on the ACS internet site right away and read through the treatment guidelines and information. You can also call them and have their pamphlets sent--it helped me to have lots of information. At first it seems like all you do is visit doctors, but mine have been wonderful and have spent lots of time with me. In my community there is a Breast Health Center attached to the hospital that has lots of info. too, as well as support groups. You'll pull through this and be a survivor! God bless.

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

I think the best thing to do is to gather as much information as you can before you tell them. They will be very frightened for you & the best way to allay those fears is to give them positive information. This gathering information process will also help you a lot to sort things out in your mind. Millions of questions will rear themselves at this stage. Write them all down as they occur to you and then sort them to ask your medical team. Take someone with you when you go as you often forget to ask the right question or you forget the answer. Your head will be swimming with all the information being thrown at you & it's hard to tell what is right for you. Just remember we are all different and every cancer is different so just because someone got a treatment not being suggested for you doesn't make it wrong. If you want some unbiased advise from someone who will understand what you are going through ask here. We have all been where you are now. Most of all do not hide what is happening from your son. He is old enough to be treated as an adult in this and will be very scared if you hide things from him. My kids were only 8 & 5 when I was first diagnosed & they were wonderful when told the truth. Also my grandson is only 5 now & he understands that nana has a life threatening disease and is very matter of fact about it. In fact sometimes I think I am the subject of show & tell at school. Good luck & keep us posting. I am praying for you. Love Pam

cherdaetwyler
Posts: 165
Joined: Dec 2000

Hi,
I was where you are in mid-November, 2000. Got really *****ed out by my children for not telling them when I got first inkling that something was wrong. Tell all concerned.

regarding Pan's advice to take someone to all appointments with you. That is great but if not possible, take a tape recorder, your list of questions, and as much information as you can gather.

be prepared to ask questions about your course of treatment.

they appreciate that you have done some study on what is happening to you and usually appreciate that you want to have input.

off course there are always some who don't want any questions or you to have any information that they don't give you. my advice would be to be wary of that sort. and
keep finding out all you can.

there are lots of good sites for information on the web and some of them are a little technical but the more you know the better off you are.

I'll add you to my prayer list and keep in touch with us here. we tend to be mouthy,
brash, but we are going through it too, and usually there is someone here who has had the problem you are encountering.
hugs and best wishes, cher

cruf
Posts: 931
Joined: Oct 2000

When I was DX. with DCIS I wanted to keep as much as possible from my 78 yr. old parents. I wanted to protect them from the pain of seeing me suffer. I told them at the suggestions of my brother and sister. That was the best thing I did. I found that it brought us much closer and mom felt good being able to help. My 15 year old daughter was my rock. She helped where she could and supported me when she could.Just be honest. They will surprise you!

melm
Posts: 105
Joined: Jan 2001

Hi, Mel here. We all know how frightened you are at this point. I had the problem of telling my brother & 75 year old mom (who is downright paranoid about something happening to me ALL OF THE TIME!). i waited until i had gathered all of the information that i could about my treatment plan ( or what i knew to that point in time). Also, by finding this information, it calmed me down enough to tell them in a rational manner and comfort them without going coo-coo. The advice everyone has given you at this point is great. My husband went to every appt. with me because my mind was such a blur I couldnt remember anything. I was diagnosed with ductal and lobular cancer in Nov. in my left breast. Since the chance of it showing up later in my right breast was high, I opted for a bilateral mastectomy with reconstruction begining the day of surgery. That was o Dec.5. I am now in my 2nd cycle of chemo. I look back on the last 3 months and can't believe that it's MY life that I'm looking at. All of us on this network know what it is to be scared and to be in pain. Talk to us anytime...Lord knows I ramble everytime I logon! Best of luck and keep the faith. A higher power is what is going to pull us all through this struggle. God bless you...you will be in my thoughts and prayers.
Mel in Ark.

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

My son was 17 when I was diagnosed. I told him from the beginning that I was ill and he never seemed to be afraid that I might not make it. It was announced during church service that our family needed prayers so his friends were asked "where is your mom's tumor?" Instead of saying I had breast cancer he said "it's on her chest". For some reason I think back on that and laugh as I was glad "breast" wasn't in his vocabulary at the time. Anyway it appeared that he was not as worried about me as my daughter who was 3yrs older. When I started informing my relatives I was amazed at finding out that other aunts and cousins had hid their diagnosis and treatments. But maybe that was a cultural thing as I am asian-american. Anyway, my relatives were grateful they were told and our family grew much closer together. We started saying "I Love You" and hugging each other for the very first time. I would recommend telling your friends and family by keeping them updated. They want to help you and you must let them, but still tell them when you need to be left alone to rest. I used email for correspondence as sometimes I was too weak to get up to anwer the phone. Take care and God bless. Love Margaret

tiger
Posts: 292
Joined: Oct 2000

The best thing for you and your family is to be honest with them. I have a nine year old son and a three year old. My nine year old related it to Terry Fox, but I explained to him the difference and told him I am not going to die. Of course my three year old does not understand. It was hard to tell my parents, but I did and they had their cry, and then I said, ok, that is the last time I want to see tears on anybodys face. I need strong ,positive people around me to help me fight this. I am stage four breast with mets to the liver. I am surprising my Drs at every turn, no one has expected me to do as well as I have. A strong mind and good strong positive attitude is a must. I had some friends that were negative and treated me like I was falling apart, so I stopped seeing them. That may sound brash, but that is not something I needed. And in a way I think they understand. I am not too worried right now about hurt feelings, I am fighting for my life, I can apologize later.
The other ladies say get as much info as possible, I believed that too in the beginning, but after seeing so many poor stories and awful statistics, I gave up on knowledge. Sometimes ignorance is bliss. One thing you have to get across to your Dr is that you are a fighter and not a statistic. Make them understand that right from the beginning. Do take someone with you to your appointments, and afterwards you will think of one million questions that you wanted to ask but were too overloaded to remember. Write them down and call your nurse, they understand that we are overwhelmed and will get back to you with answers that you need. I do that after every appointment. I just need a few days after seeing them to digest everything and then I come up with my questions. Each to their own. You will find your own method of doing things, but do not ever, ever be afraid of crying,screaming, laughing hysterically,or talking someones ear off about the whole thing. It is amazingly therapeutic. Ok, I am prone to rambling as you can tell!! Take care and keep us updated. WE will all be here for you at any time of the day,we will love you, support you and lend you strength when you need it most. Fight The Good Fight!!
Hugs from Tiger

vinny
Posts: 46
Joined: Sep 2000

Hi ak
Welcome, you'll find you came to the right place, the ladies here are a towering inferno. Whatever your needs, you'll find it here. I have to agree with everyone that honesty is the best policy. You'll feel better about everyone knowing and you can move onto other issues as they come. Try to be as positive as possible and keep us posted. Thoughts and prayers are with you, vinnie

judyd
Posts: 130
Joined: Nov 2000

Hi, I must agree with everyone else here. I think you need to be honest with your family. The hardest thing I had to do was to tell my Mom. She has lost my Dad & then my Grand-Dad in the last few years. I told her & my sisters that I needed positive attitudes to help me through this. They have all been great. I'm sure my Mom has cried a bucket of tears for me but just not in front of me. I will keep you in my thoughts & prayers. Everyone here can give you great advice or just listen when you need them to. Keep in touch. Judy

alice123
Posts: 8
Joined: Feb 2001

That was a hard one for me too. Be straight forward,give them all the facts tell them what your treatment plan will be and that you are doing every thing you can and your doctors will take excellent care of you.Then its time to stop worrying about every one else and concentrate on you. Your going to be okay. The fear comes,then it goes. Take Care... Alice

shout51
Posts: 11
Joined: Jan 2001

It will soon be six years and I am still cancer-free, so there is hope, never forget that. I was on Tamoxifen for almost five years. I had 6 chemo treatments and 30 radiation treatments, my cancer was in the lymphnodes. It was hard and scary but I made it. And if I can,then anyone can because I didn't think I was a strong person, so I even surprised myself. You pull strength from places you never knew you had. Bless you, Shirley

shout51
Posts: 11
Joined: Jan 2001

When I was diagnosed, I also had a 15 year old son and a 21 year old son and a new husband of three months. I was always truthful with my sons and I let them know every aspect of my treatment. My parents are no longer living and I didn't have to go through that, thank goodness. I let my youngest son go with me to my first chemo treatment and to all my surgeries. My oldest son lived out of town when I first was diagnosed but he moved home during part of my treatments and he was there for several surgeries. Yes the decision of treatment is very frightening, make sure you have the best doctors you can find. I had the same type of cancer and I have been cancer-free for 6 years in May,2001. I had 3 chemo treatments, a bilateral mastectomy, 3 more chemo treatments, 30 radiation treatments, and Tamoxifen for 5 years. I had the best surgeon and oncologist I think and they are at the Arkansas Cancer Research Center in Little Rock, AR. There is no better place to go as far as I am concerned. My thoughts are with you. Good luck, Shout51

webaur
Posts: 114
Joined: Feb 2001

Hi, ak!!

The advice you have already received is superb, but I thought I would add my two cents worth.

I was diagnosed (on 1/23) with "infiltrating ductal carcinoma" but also with "squamous metaplasia". In other words, I have what is normally a skin cancer complicating an already frigtening situation. Anyway, I wasn't sure how to tell my family--luckily, my husband has done the informing. Honesty is certainly the best way to go. You'd be surprised at how strong your children and your parents can be. It was extremely difficult for me to have my mom find out because my father died of lymphoma not quite two years ago. My mom mad been through so much with his healther for the last 23 years, that I just didn't want her to have to deal with it again. To compound things, she is 1100 miles away and just can't come very often. As said, my husband has been the informant, and my mom has been great--so have my two mothers-in-law (my husband has a step-mother)!! My children are 18, 15, 12, and 6 mos. I dreaded my 18 year old daughter's reaction--2-1/2 years ago, her boyfriend's mother died of recurrent breast cancer in the liver. She has been a real trooper--she sent me a cut and paste construction paper card via special delivery (a friend) from colleg, since she couldn't get home right away. She also sent notes of encouragement to her dad, sister, and brother. What a strong young lady she turned out to be!! My 15 year old (she just turned 15 yesterday) has been a rock, too. She has been my friend, too. She may not always want to , but she listens to me and has helped me pick out a hat and gave my hairdresser her input on styling the two wigs I was lent by the local ACS.

I see that I am rambling on. Anyway, if you can look at it this way, the one GOOD thing that has come out of this is that our family has gotten closer together--where we were sort of drifting along on our own little paths before. Always look for the good that can come from this very BAD thing. Try to keep positive and lean on your family and friends.....they really want to love you and be there for you. I'll tell you, it sure beats the heck out of going it alone!!! What type of support people do you have around you? Church? Family other than parents and son? You already know that you have all of us here.

Feel free to e-mail me at anytime. I will try to get back to you as quickly as I can. Life goes on and I have to keep pressing on taking the kids here and there, etc. Whatever help and support I can give you are yours...just ask!! Take care and you are in my thoughts and prayers.

Blessings....Wendy

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