How did you feel when you were first diagnosed?
I was just told today that I have IDC . I am 48 and premenopausal. It's small 3 X 3 X 11 mm. I am scheduled to see a surgeon in 3 weeks. I am so grateful to have good caring doctors, but the problem with getting sick in the summer is that everyone is on vacation!
Anyway the point of my post was to share my initial feelings about my cancer diagnosis, because I have realized over the years that if I stay alone in my head for too long, I wind up in a bad neighborhood.
These are just feelings and they are not based on any real solid truths - ( that's my disclaimer)
I am ashamed to admit that my first thought was losing my hair. ( I love my hair)
I am afraid that others will judge me and assume that I just wasn't taking care of myself.
I read that the cancer drugs cause weight gain and I do not want to gain any more weight. I already have too much as it is
I am afraid people will not want to be my friend because they will be uncomfortable around me
I don't want people to feel sorry for me or talk about me at work
I am afraid I won't be able to work
I am afraid people will be too nosy and ask me too many questions
There is nowhere to cry at work or even take a private phone call
I will be too sick to be a good wife and mother
They haven't found everything yet
The doctors know more than they are telling me
I feel contaminated and damaged
I am not ready to be positive and optimistic
Why can't I just get a new pair of boobs and be done?
Thanks for "listening" everyone- MT
Comments
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I was just diagnosed 3 days ago and have the same sentiments. So sorry, DR
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Hi MT and DR:
I am listening. I was 52 (also pre-menopausal).
Thank you for your posts.
BarredOwl
Stage IA IDC; Bilateral mastectomy and SNB without reconstruction 9/2013
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MarieTherese, I am in total sympathy with you. Had to do chemo and lost my hair. But it is growing back, about 1" long now, but not halfway down my back like it was.
Gained about 20 pounds during chemo after working hard to lose 50. But it is coming back off slowly, down 5 pounds two months after chemo.
Had a PET scan and bone scan after surgery, scared to death. Got through that.
All of your concerns are valid except you are not contaminated and damaged. You are a human being, and with all the cells our bodies make, things just sometimes go wrong.
You will find out who your true friends are during this process, and once you do, hang on to them.
Great big hugs, you will get through this process. For me, where you are right now was the scariest point. Once you have made decisions and have an action plan, just take it step by step and don't try to think too far down the road, because it can be overwhelming. Rant all you want, cry, I will listen
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Marie,
You've come to the right place... There are many women here who can help as you encounter anything you don't understand , or worry about or if you just need to talk.
I've dealt with this twice the first time in my 30's when all my friends were having babies. That time InTriple a Negative The second time in my other breast last year I was Triple Positive .
Like yours both of mine were small tumors. There was no nodal involvement either time, both times I had chemo. I've been married all through this and my husband was a great support. Not everyone needs chemo, it depends on stage, grade, type of cancer, age etc. you may not need it, Orr you might.
I worked through both treatments... My husband and I work together (we're screenwriters) so we can usually work from home which makes things easier.
Everyone's experience is different, so mine will be different from others who I'll answer you, and yours will be different still. There are certain commonalities we all deal with. I'll just tell you what my experiences were.
The first time my chemo was CMF it didn't cause hair loss, ( I was prepared with a wig) but it does cause hair thinning to a greater or lesser degree. I never needed a wig and because of my business had to keep my diagnoses secret back in 1990. I have rather thick curly hair which can get bushy and actually I was the only one that noticed anything, everyone ( who didn't have the faintest idea I had cancer or was having chemo) kept telling me how great I looked .
The second time I had Taxol for chemo which causes hair loss. My doctors at UCSF advised me to cold cap which I did during chemo treatments once a week for 12 weeks. The result was I kept my shoulder length hair, the caps worked excellently for me. There are many women on this site who've used cold caps if you decided to do that and there are forums on this site which can answer any questions, if you need chemo and decide not to cold cap there are a lot of people with great advice on wigs (shopping for them, fitting them, care etc) either way this site has your back.
In my particular case I didn't gain any weight during treatment, I was worried about that too as I'm small and didn't want to have to buy all new clothes!! Some people gain weight, some don't some lose... Either way there are women here who've had the experience and can advise and help and listen to you
No one judged me for getting cancer, I was a non smoking, non drinking, running vegetarian young woman the first time the second time I was a damn vegan!! It's just luck of the draw, or genetics, or shit just happens to people none of this is your fault. Of course there are people out there who will say dumb, or stupid stuff we all deal with those and there are plenty of boards where one can vent and we can all laugh at the dumb shit that happens.
I know that this is a scarey time, and you're going from zero to 600 as you're propelled into this cancer world, don't be afraid to ask questions, bring an advocate ( friend, husband, partner etc) to Drs appointments with you to write stuff down...I didn't hear a thing once the doctor said cancer...or to ask questions for you. As you get more information, and a treatment plan etc things will be better
I'm sure I'm forgetting something, or haven't covered something either way there are a lot of helpful caring people here who are here for you.
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Your kind words and honest replies are so meaningful for me. The value of boards like this one is immeasurable and I am having one of those "what did we do before the internet" moments.
In my mid 30's ( when all my friends were having babies) my husband and I found out that we could never bio children and it felt a lot like this diagnosis does. Sounds strange to say, I know, but I am having a lot of the same feelings. I felt alone and angry. I was afraid that others would not want to be around me and I did lose some friends. They were people who just felt too uncomfortable with my anger and depression. ( even some family members) A lot of well meaning and some not so well meaning people said stupid things like "whose fault is it yours or your husband's?" I took infertility drugs that made me crazy and made me gain weight. II cried a lot. I hid a lot.
I remember really wanting to talk to other people who shared my story in some way . I have so many more questions. I just don't know what they are yet
Thanks for listening -MT
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DR- I am sorry too- It sucks.
MT
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anytime. As you get closer to your appointment, you will probably have lots of questions. I kept a note pad and whenever I thought of something, I wrote it down. Then when I met with the appropriate doctor, I dragged out my list, asked the questions, and wrote down the answers. A month down the road, I took out my notebook and looked at my questions and answers, and a lot of them I didn't remember asking. So it helped me to chronicle what was happening.
As for those who don't stick around or want to place blame by asking whose fault is it, or whatever, just give them a good smackdown and walk away. They aren't worth your trouble. I found that the weirdest people have stuck by me, people I would never have said would. And you can always come here. No question is too dumb to ask. Believe me, we have all asked the "dumb" questions. Once you get a surgery date and type, and then if you have to do chemo or radiation, join the forum on here for your month. A wonderful woman from Australia started our March chemo forum, and that is basically where I have lived and laughed and cried through this process. Because others going through it with you totally get it.
Xoxo.
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Diagnosed a week ago. I'm 51
The one thing I don't mind so much from a personal standpoint is the idea of losing my hair. I've shaved it twice in my life for reasons not related to any illness, and I actually liked it. I live in a tropical climate and it was so much cooler. Of course I still had eyebrows! I didn't mind what people thought about it then because I had nothing to feel self-conscious about, but if/when I lose my hair from chemo guess I'll be more aware of people staring and thinking I have it. I don't want to be that woman. No plans to wear wigs or hats though - it's just too hot here, so other folks will just have to deal.
I have only told 3 people besides my husband, and one of them freaked out in a way that destroyed my formerly positive attitude, so I'm not looking forward to ever telling anyone else. I'll probably let my mom tell the rest of the family when we find out how bad it is. Some people have a way of supporting you right into the mental hospital.
I do partially blame myself for some poor lifestyle choices. I haven't felt judged about it though. Everyone I have said that to, including my doctors, has said what's done is done, don't beat yourself up about it. Can't really say that's what did it anyway, because so many different factors both within and beyond our control contribute to cancers.
The doctors do often know more than they are telling you. In my case I could tell it had the suspicious characteristics of malignancy in the ultrasound, because I've had a lot of benign breast lumps and I've looked at a lot of images online in the past. But they wouldn't admit it even when asked directly. The question made the radiologist visibly uncomfortable - what I call his "yes, you've got cancer look." And he had no answer when I asked him what else it could possibly be. Another giveaway was when I told the US tech about my history and my hopes for a similar outcome that day, instead of saying something reassuring, like most lumps are benign, she asked me if I had a family history of breast cancer. Uh oh! Everyone is different but I can't stand not knowing so I will ask.
One good thing is that I don't seem to care about saying what's on my mind to the medical professionals in my life like I used to. I used to worry what they would think. Not anymore; more important things to worry about...
Such as my family needing me. That's #1 and that's very very real.
2nd real worry is that this thing was big to begin with and it's growing fast, because I can tell the difference from just a few weeks ago. I won't even spell out what kind of thoughts that leads me to, because I'm sure you all can imagine.
Yours is so small, I think I'd be worried but feeling pretty good about chances. I'm sure you'll be fine!
Best wishes! -
solfeo- thanks for sharing. I have not told many people- only my family knows. I did talk to my 11 year old daughter and reassure her and she seems OK. I am not in a rush to tell other people.
Italychick- thanks-
The first time I had a BC scare, we were in the process of adopting a child and all I could think was- " I can't have the baby now"
The second scare I kept saying " I need to take my daughter to see France" - (I just love France)
This time ( the first confirmed diagnosis) I seem to be all over the place, but the hair loss fear keeps coming back.
Just thinking out loud- MT
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Marie,
If you're upset about hair loss, if you even need chemo, there are cold caps . Last year even though I'd been through this before 25 yrs ago I was obsessed with the whole losing my hair thing, which is why my Drs at UCSF suggested cold capping. There are things that can be done to address this issue. Speak to your doctor and some of the ladies here if this is a big fear for you. You'll do well, you're in the right place here
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it also depends on the regimen you are on. I had super thick blonde hair halfway down my back. I now have chin length short hair that is thin. But ihave no bald spots, at least not yet.
So it is possible for your hair to thin but not fall out.
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Suladog-
It's good to know there are options even for side effects. I saw that there is an active thread dedicated to cold caps. I had never heard of them until you mentioned ot
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I felt/feel a lot of the same feelings you've described, but mostly the whole experience often seems unreal, like a bad dream, as in "this can NOT be happening." Things were finally going well in our lives, careers and marriage. The kids are grown or almost grown (last child, my SS is 17) and we were looking forward to the next stages of our lives, then this.
I still struggle with the reality of it. Some mornings I wake up and for just those first few minutes of consciousness forget I had BC. Then I move and feel my achy, swollen radiated breast and am reminded that the nightmare is totally real and it pretty much sucks!
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Isabelle- I know what you mean. Sometimes I forget for an hour and then it hits me again and I feel like crying all over again.. I ,too, was thinking about the next phases of my life and really looking forward to them. I am still waiting for surgery and treatment options available based on what kind I have exactly.
I just want to scream, BUT I HAD OTHER PLANS !
DX- 8/07/2015 - IDC Right 3x3x11mm ( that's all I know)
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MT, your writing is so lovely! I believe the first thing the nurse navigator told me to do was to begin journaling, and you are beginning to disarm those ugly thoughts already. A diagnosis of breast cancer is a major loss, and the grief you are experiencing is natural, if unwelcome. But dealing with it as effectively as you are is inspirational.
My best to you in the days and weeks ahead. You will prevail.
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Itzy-
Thank you. I really appreciate it. As with any crisis, I just keep watching the thoughts and trying not to judge them however crazy they get. Somehow voicing them is releasing them for me and like you said "disarming them"
Knowing that others are listening and not judging makes all the difference.
MT
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At first? Shocked and stunned. Later? a good many of the things you've felt. Damaged--afraid to stand before my husband, to change at the Y. (Swimming and my husband have both been part of my life for thirty years.) The doctors haven't found everything (I have very dense breasts.) What if it comes back? What if I need a mastectomy? (that aforementioned swimming, and weight lifting--what if I lose full range or motion? what if I can't lift heavy weights without risking lymphedema)
But the short answer is: yes, we're listening and not judging.
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queenmomcat
Thanks . I'm listening too
MT
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I think most of the women here would speak the exact same fears as you. I certainly have run all of these through the gamet. I agree that spending too much time ruminating is what sends me into a tailspin. Or going to a Web site with negative vibes. I try and stay with the positive and when I find myself slumping into that "bad neighborhood" I try and force myself to get up and get moving. Clean the house, play my guitar, plug in a yoga tape. Anything to feel proactive in my care makes me feel way better. Yes, I still get crying jags. I am still waiting for my total evaluation and staging, then whatever treatment plan comes my way. I have the mantra in my head "one day at a time, one day at a time ........
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Iabelle, My feelings about my life are simliar to yours. The kids are almost on their own, we finally were starting to bolster up the bank account. Then WHAM! Guess what? I to will wake up in the morning at the dread just hits me square on, remembering the new reality. It takes a lot of different mental tricks to get me through some days.
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MarieTherese, artistatheart has the right idea. I stay as busy as I can, never quit working or exercising, just put my head down and did things and stayed out of my head. The more you do that is normal, the less time to go to the dark places. Time goes by, you will get an official diagnosis and treatment plan, and then just start ticking off the boxes and get through it. Do you have good support? Where do you live?
By the way, my name was supposed to be spelled Therese, and they messed up on my birth certificate. And Marie was my sisters middle name, and is also my granddaughters middle name.
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I'm not sure to be grateful for those moments I forget I have had BC (sometimes they are the best part of the day) or resentful, because afterwards it seems I need to process this crap all over again and again and again.
It's nice to know I'm not alone in regards to this. Sometimes I think I'm loosing it!
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I love this thread of comments - I feel exactly the same as ALL of you, so great to know we are not alone in this.
I am 46, pre-menopausal and my husband and I were getting ready for this next phase of our lives also, youngest daughter is 18 and heading off to university this month.
WHAM! I keep thinking I'll be woken up from a bad dream, but every morning have to repeat the mantra, over and over again. Worried sick about so many things, but as artistaheart wrote, "one day at at time, one day at a time"...
Hugs to you!
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Like others have said, I also have those few minutes when I wake up in the morning when everything feels normal and I'm ready to start my day like a "normal" person. Then it hits me. I'm not sure I can describe this very well, but I'm almost afraid to stop thinking about it, or to believe everything will turn out OK, because those moments when the reality comes flooding back are such an acute disheartening jolt. It's like having my hopes crushed all over again and I hate that sinking feeling. It's like PTSD. At least the continuous knowledge of it is steady.
This is even stranger: since I think of excessive worry as irrational, in a subconscious way I guess I feel that if I worry enough that means it is an irrational fear and the worst can't really happen.
Yeah, I need a psychologist. Trying to get in with one next week.
One thing about the hair that I wasn't thinking about when I wrote my reply yesterday is that my hair has been thinning for years, and I've been using Rogaine for it. So even though I think I'll do OK through the hairless part, it's going to be harder having to let the thinning patches come back when my hair grows back. Because I can never put chemicals like Rogaine into my body again.
Although I'm not feeling positive overall at the moment, I always like to think of something to balance out the negative. My positive for this post is that I have not lost my sense of humor, and I don't think I will no matter what happens. Unfortunately I have to be careful with whom I joke around with, because some others can't take it. One family member actually yelled at me for laughing, like I'm not allowed to laugh because something bad is happening. And I've noticed that some of the medical types seem to feel they shouldn't laugh even when something I say is clearly funny. I think they could use some continuing medical education on that subject. You don't want to laugh at your patient, but it certainly does lighten the mood in the room to laugh with them. Even when you're not sick it's awkward to be met with a blank stare when you say something funny. -
Marie, I wish I could be with you right now and give you a big hug and tell you that everything was going to be easier than you think it's going to be. Everyone has the same concerns. First of all I want to tell you that losing your hair is not that bad. I had three wigs blonde, redhead and brunette and quite frankly had a lot of fun with my alter ego's!
The outpouring of love and support you will get will be overwhelming. Whereabouts do you live? I am in Massachusetts and will offer any support that I can. I wrote a book called fuck off Cancer by Linda Brossi Murphy and this book would help you dramatically to know that it is not as scary in reality as it is in our minds. You can do this! Hang in there! XOXO
I can honestly tell you from the other side of treatment that if it's caught early it is just a diagnosis and something to get through. -
isItalyChick- Marie is my middle name; Therese ( the French spelling with accents and all) is my mother's. My name is Christine
Labelle- love the name BTW and Solfeo- I just woke up from a peaceful nap with that gut sinking, face slapping feeling you talked about. My hope is that that will begin to lessen as the path and the options become clearer. It is like living the nightmare over and over
Solfeo- I love to joke around too- you should start a thread and I will join in. I am also looking for a list of funny movies or TV shows to watch. I also believe in having a therapist on retainer at all times. I need to get in touch with mine as well; I call her once every couple of years and you just reminded me that i need to do that as well. I'll be watching for your thread cause I need a good laugh- Want to know what you told the med staff.. MT
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FCKoffCancer- your book is on my list. love the title, because it says it all. will send you a PM because I may be headed your way for treatment or opinions in the Boston area.
MT
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MarieTherese, good idea to start a laugh at cancer thread. Not remembering a lot right now, but since the real roller coaster with the doctor's appointments and tests starts next week, I will make a point of remembering the funnies and the smiles and sour faces I get in return. It will give me something to focus on besides what they are doing to me. I wish I could draw so I could add artist renderings!
Just a couple of things to tide you over:
I have huge breasts and they had to keep adding more of the ultrasound goop. I joked, you might need a whole can for these babies! The US tech grinned a little like she wanted to laugh but the radiologist didn't even flinch. Not my best work but it was obvious it was meant to be humorous.
Then the day of the biopsy they asked me if I wanted to watch the screen. I said I definitely did. I followed that with, unless I pass out in which case I won't be watching much, giggle giggle. At that point the tech and I had a rapport so she did laugh, but the doctor scolded me, "Are you squeamish? Because if you are I don't want you watching!" Relax dude it was joke. Couldn't you tell from the laughter? At that point the US tech and I both busted up, and you could tell he was a little irritated (I hope she didn't get in trouble). That was Dr. You Have Cancer Face (I also like to give them nick names based on their personalities). Then she and I joked around through the rest of the procedure about this and that, and it was over before I knew it and not unpleasant at all. Even after he gave away with his expression that they did think it was malignant. The tech was the one who made the whole thing bearable. Thus my point, that humor goes a long way to lighten up such a heavy, heavy situation.
So laugh on ladies...we can do this!
Now I'm going to get off this computer and try to relax and watch some tube. Have a good night. -
love that you have nicknames! That's hysterical!
MT
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oh sweetie, i had all the same feelings and more, i was 42 premenapausal, and had just met my second husband i prayed for, we were making wedding plans when i found my lump, went for L mast, chemo before, chemo after total six months, andi didnt want to lose my hair or my boob during engagement, but Praise God, i am now a 21yr Survivor and we,ve been married 21yrs this past may, u and Us all here are in my prayers daily. msphil(idc,stage2, 0/3 nodes, L mast chemo and rads and 5 yrs on tamoxifen, did have weight gain, but i,m here and extra weight is now gone, hair is back too)
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