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Old 05-13-2006, 04:12 PM   #1
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Marirose HB User
New here,Lots of ?s on Helping a Friend Cope

I would appreciate any advice that any one can give me....My dear friend and neighbor was just diagnosed on Thursday with Stage 3 (poss. 4 after she gets bone scan, chest xray, etc) Breast cancer. She had a complete mastectomy, and there is node involvement. (pls. excuse me if this is redundant info., all the terms of b.c. are new to me) She will find out this coming week exactly how many lymph nodes are involved. The dr. told us that she will need 9 chemo. treatments over 27 weeks and then 4 weeks of radiation, and poss. more surgery. We are reeling, as you can imagine. She just found the lump 2 weeks ago.

My questions are....what does the dr. mean when he said she has a 25-40% chance of surviving 5 yrs without a recurrence? Does that mean she has 25-40% chance of living that long, or of living that long without cancer after treatment? Then what does one expect? I am getting alot of second hand info. from her husband right now, and as close as we are, it is hard to "push" for more info. when I don't understand exactly what he is saying.

Lastly, and pls. don't answer if this is too personal....I know everyone is different, but I want to be as helpful as possible here. Is there anything that you just LOVED or just HATED hearing from others when you were newly diagnosed? I never thought it would be hard to know what to say or what NOT to say to someone you love, but it is! She has three children, is 35 years old, and her youngest son has very complicated special needs. I can't even imagine her terror that she might be dying and leaving them behind (ages 9 to 13). I truly can't imagine. Please help if you can with what helped you. Doing things to help comes easily to me, I would hate to upset her further with clumsy words.

Thank you all and God bless, Marirose

 
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Old 05-15-2006, 07:29 AM   #2
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dizzyblond HB User
Re: New here,Lots of ?s on Helping a Friend Cope

Dear Marirose,
I am so, so sorry to hear about your dear friend. How devastating for all who love her, and I'm sure yesterday, Mother's Day, must have been especially emotional. She is so young to have to face such bad news, and the struggle you find yourself in as you try to figure out just how to deal with such a difficult situation is a hard one.

I've not had breast cancer (though I've had a scare, as well as a mother and sister who've both had it), but I have a position at work that requires that I deal with many people in crisis. I can tell you that you needn't worry about just exactly what to say. (In fact, I'm convinced that right now, it's not what you have to say, it's just your presence in her life that is going to be most important. There are no words when things look so bleak - so reassuring her that you will be there for all that lies ahead, that you will fight this thing together, etc., will be more than enough. She will need to vent - to let her emotions pour out, and she may be able to more honest with you than she can be with her very family. You will see every shade of emotion - from anger to fear and everything in betwee. Just be a listeing ear for her, a continual support, no matter what kind of mood she might be in. That's what she will appreciate the most.

Don't shy away from her, and don't let her isolate herself. We cannot predict how this will play out - and there have been many people who have far exceeded doctors' predictions when it comes to prognosis. I have seen it many times over 20 years in my position.

Please let me know how it's going.

XOXOX

 
Old 05-16-2006, 08:53 AM   #3
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hey_all HB User
Re: New here,Lots of ?s on Helping a Friend Cope

hi

i know how it's difficult to hear that someone you love is diagnosed with bc ...

my mother was diagnosed with a recurrence of bc last december.

i just want to tell you one thing, and i'm not trying ease your mind or something, but this is a fact.

NEVER EVER read or listen to the stats. When the her onc said that there is an x% chance of bla bla, then he is reading the result of a clinical trial or a study for a group of patients with similar diagnosis. Now these groups are really large. They just calculate the "average".

According to stats, my mother has a very small chance of living 10 months, because she developed malignant pleural effusion at presentation, and from the way i see my mother 5 months after diagnosis, i'm 90% sure she will live more than 10 months, i know a lady with similar dx that lived for more than 18 months, she is still OK. So my point don't bother yourself and herself with stats.

Well, everybody is different, and from my experience, i say don't try to tell her that breast cancer is one of the most treatable cancers, while it really is, cancer is cancer.

also running away or thinking that leaving her to rest is one of the worst mistakes i did,

at the begnning i thought that i should leave my mother rest and heal from chemo (i really did it with good intentions), i should not have done that. being with her most of the time was really helping.

i'm not trying to say that you should leave your family or something like that, no, i mean just continue the way you were dealing with her.

forgive my english, i'm a non-native speaker.

God bless you and your friend

 
Old 05-16-2006, 01:54 PM   #4
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Marirose HB User
Re: New here,Lots of ?s on Helping a Friend Cope

HI y'all - Thank you so much for the respones. They have helped me so much. I am impressed with your English, "Hey All", much better than I could do in any of the other languages I speak, I can tell you that much.

I am grateful to both of you for saying "don't mind the stats". It is so hard to figure what these doctors mean sometimes and what to make out of it.

My friend and I live with our families out here in what we proudly call the "boondocks" and farm life is tough enough without illness thrown into the mix, so I am going to keep right on working beside her as we have always done, for as long as she is able. And then I will just try to keep her company as you both suggested. It seems easiest to listen, which I think I am pretty good at. (I have six sons at home - so most times it is impossible for me to get a word in at all!) She is still pretty shaken, mentally, and is still in the mindset that "this is it, I am going to die". I hope she will find her way out of that soon, but I realize I can not talk her out of it, so I just listen and encourage her and pray like crazy. I appreciate your time so much, and your blessings on us - we are going to need them, so pls. keep them coming.

No new news from the doc. yet today, but I will update you as soon as I hear. Thanks for being here - you have both helped alot.

God bless, Marirose

Last edited by Marirose; 05-16-2006 at 01:55 PM.

 
Old 05-19-2006, 10:13 PM   #5
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LizNicole HB User
Re: New here,Lots of ?s on Helping a Friend Cope

Marirose,

I am so so sorry for your friends Diagnosis. I am a little further from where she is. Perhaps I can help, that is when I'm not sleeping. I had my fist chemo yesterday. That's another story. This stuff can happen so fast it is only a month ago I got my news an bam bam bam. I was off to surgery in two days and then off for more in another week.

Here is my question to you...You said she has stage three? or four? I was given this staging and later it was kicked back to two. What tests did she have. You Need a CT scan and a bone scan to determine this as much as I know. The staging has to do with the metasisis. Stage three can mean cancer is in the bone. This is what they seem to be telling you, so they did a bone scan with the disgusting gastrographic she had to drink the night before? The CT scan which would give her the staging for the liver and other organs must to have been. These tests take time to order and get read. If she hasn't had these tests make sure she gets them even if the hospitall doesn't want to give them to save money.

Forget those stupid statistics. I went so far downhill the day I got them when they told me I was possibly stage four. I was an idiot. I swore I would never go near them. Like a pandoras box, I did it and paid. The last thing we need is that stuff. stay away from it. It's like listening to your worst enemy tryiing to spoil your day. You don't need to ask me about that one, right?

OK, how to talk and be friends....the problem here is it changes and we are all different, but there are some great books you can get sent to you or drop in on any American Cancer Society for helpful books. I was looking at one today and plan to get some for friends. These are my suggestions but I am a completely different person....I've found sometimes in the very beginning I had to talk a lot. I was in total shock. I just needed a warm body, a hug, etc. Mostly we need NO ADVICE!!! and the worst has got to be when people say "You know my friend Betty had cancer and she....blah blah" it sounds nice but what is happening is Betty gets all the attention, your friend doesn't get to process her own feelings and fears and she will always have to live up to Betty and what Betty did for her cancer could kill your friend. Sorry to be harsh but this one I get all day long.

Don't tell her to be posiitve..don't tell her to be negative, don't tell her to be anything. Get comfortible with not talking..take her lead. It can be an amazing experience for both of you and then it can be aufull. I have friends who call non stop and won't stop calling and just won't give me a break. These are the people I have to say goodbye to.

I hope this isn't harsh but you asked. Also your friend can get free wigs (Hey I happened to get a $2,000 human hair wig for free at the American Cancer Society and they have great makeup classes, can give her rides for chemo. I think the best thing any friend can do is to join your friend for chemo, that's big big one. She will need someone there to take notes on big days (pre surgery), results etc.

Find out from her when she will get the results for her tests. Be there if you can. Getting this news on the phone can be devastating and being alone and waiting for someone to return your call. I actually passed out after one call.

So, I hope that helps, I'm a little ahead of her i'm guessin as I had my first chemo. Same old questions...is she estrogen positive, hercepton receptor:

You yell anytime you want help, Liz ps be patient I just had my dense dose chemo

 
Old 05-20-2006, 01:34 PM   #6
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Marirose HB User
Re: New here,Lots of ?s on Helping a Friend Cope

Dear Liz, Thanks for your post. It wasn't harsh at all - from what I see, cancer and it's treatments are the harsh things here. I have read it and will get back with you later about her tests - she had a bone scan, and CT. I have tons of chores to do this afternoon - got six kids of my own, my friend has 3,(one with special needs), and our farm and theirs to take care of between me, my husband and her husband - but just wanted to post a brief THANK YOU and more details later. You hang in there - thanks for posting after chemo - that must not have been easy, but I am very grateful. Will get to you with more details and all after the sun goes down. God bless you Liz- Mari

 
Old 05-22-2006, 01:04 PM   #7
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Marirose HB User
Re: New here,Lots of ?s on Helping a Friend Cope

Hi y'all - Here is the latest we found out today - some good news - the CT scan had some good results - no involvement of liver or lungs - results due from the bone scan any day. However, the less happy news is that the cancer is apparently very aggressive, "growing" and spreading very quickly. The doctor said it was Stage III, and then said it was the most aggressive sub category of stage III - I can't remember the exact term he used "grade III", maybe? I am going to take your advice, LizNicole, and take notes from now on. I have just been going to the appts. to babysit my friend's son with the special needs. She likes having him there, and it is a bit of a hike to the hospital from where we are, so it helps him, too, not to be seperated from both his mom and dad all day long. Further the doc. has now ordered 48 chemo treatments, going every other week, and then radiation, upping it from his first prescription of 27 chemo treatments going every 3 weeks. I am not sure how important that is, but from this perspective it seems HUGE.

However, the ride back from the hospital did give us a good chance to talk about how we can get through this, and it wasn't as hard as I thought it was going to be. She wants to keep things as "normal" as possible, so we are just going to go day by day now,at least until the chemo. starts.

Just as her friend, it is so hard to hear these things and to watch her eyes fill up with tears when she looks at her son as the doctor talks about survival rates, etc. I can not imagine, I just can't imagine. I am so grateful to those of you here who have lent your hard-earned "expert advice" to me. She is my dear friend, neighbor, and we do get a little isolated out here in the country sometimes, so it is great to be able to have y'all as a source of info. and support.

God bless you all on your journeys - Marirose

 
Old 05-22-2006, 10:58 PM   #8
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hey_all HB User
Re: New here,Lots of ?s on Helping a Friend Cope

i'm truly happy for her CT results, i really am

i hope the bone scan comes back clear ...

your friend sounds nice with all of the love you express to her ... she is lucky to have you on her side ... God bless you

i will be there for any question regarding chemo. I'm the caregiver of my mother and i know many things about chemo, specially the so-called Adriamycin/Cyclophosphamide regime

and yes, it's Grade III, the grade explains the aggressiveness of a cancer.

please keep us posted

 
Old 05-23-2006, 11:23 AM   #9
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Marirose HB User
Re: New here,Lots of ?s on Helping a Friend Cope

Hey - Thanks for the post. My friend, CC, is a wonderful person...she deserves all the love she gets...I am lucky to have her in my life. Thanks for offering to be with us for help thru the chemo. I am sure we will have a lot of questions when that starts in two weeks time. I will keep you posted on the bone scan results. Thanks for everything, God bless, Mari

 
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