Stage III Recently Diagnosed What are Your Issues?
Hi Stage 3ers. I come here all the time for encouragement and love all of you women here because of the many ways in which you contribute to helping each other with this frustrating diagnosis.
I wanted to start this discussion for those of us who have been recently dealing with this diagnosis within the last year and have anything that is on your minds that you would like to share, whether or not you are talking about your positive experiences or not so positve feelings about how you are dealing. Reading some of the topics lately has left me feeling that we need this place to talk about some of this stuff. For instance, as far as my own diagnosis is concerned, I am only a year on March 18th since my mastectomy, and it wasn't until April that I had the axillary node dissection and the stage III diagnosis. I didn't start chemo until May, finished in Sept. did Rads from OCT to Nov, and did my first Zometa in Dec. and going next week for my second Zometa. All of this is just so damned new to me and I want to be able to say I am 5 years out at least but right now. I live with how brand new all this is and waiting for something next to happen. Arimidex is causing new problems for me too. but I don't want to join that thread. I feel out of place joining the fitness theads because I am just so weak and achy still, I have no stamina and endurance. I hate the skin I am in right now. I don't even know myself when I look in the mirror. I went from having a good figure that over the years fluctuated between size 4 to 6. I've always been active and working out varying from running, horse jumping, fast walking, extensive gardening etc. That all changed. This past summer I went to looking at a bald, bloated exhausted women. Now I have hair that's grown an inch and it looks like an old women who''s had a perm because it's so curley. It won't take any highlights because of the chemo so i don't have the long sleek blonde shoulder length hair anymore. The worst thing is that I've gained about 35 lbs since diagnosis and I can't stand how it feels on me. I look like a blob with a scarred blob boob, and I can't get my ass in my jeans comfortably anymore. So I've started fast walking a mile and half every day. That's alright but the weather here at the beach has been so cold and windy I can't get out every day, so I started doing cardio sculpting, and strength training with a DVD. That sucks, but I did it today and feel so exhausted and weak. Between being depressed over body image and fear of recurrance and not trusting my body anymore, and hating the comments I hear from people who have no clue about B C I wanted to rant about it here.. Stage 3 sucks and I went for my first mammo last week on the remaining breast, that really sucks too.
So if there are any other Stage 3ers out there who have issues they are dealing with here's the place to come.
Comments
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hey shanagirl--
I hear you. I am practically on your time table: dx March 0/10, chemo April through Sept, double MX Oct, just finished rads Dec 16. Now taking Tamoxifen and starting Zometa next month. AND I have developed mild (so far) lymphedema which just BLOWS.
I find that exercise really really helps me and makes me feel a little in control of my body again. I am also dealing with short gray curly hair and I HATE it.
That's my vent. More to come!
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Christine ~ That's the thing. The whole loss of control. I might feel a little more in control if I had more energy to get more into the working out and losing the weight faster and at least feel like I look a little more healthy again. Short curly hair, HA HA! I HATE it too!
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The constant fear of recurrence is also something I battle all the time-- people say to me, "you are done, right?"my answer is always "I hope so!" I have seen a nutritionist who has put me on a diet and supplements-- that has also given me a sense of control.
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Shana - I think the lack of energy is what brings the mood down............way down. For those of us who used to be very active, to all of a sudden have no energy, weight gain and look in the mirror and don't see our "old" self can be challenging. For me, the lack of energy, pain in my legs and feet along with joint pain have been difficult. And.............I know on the days that my energy is low or I am physcially feeling bad, my mental state is much different than on the days I feel a little more energetic ,except today - I was in just a pissy mood today.
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What irritates me?
My husband has a large social network. My breast cancer diagnosis was not kept a secret. I was diagnosed 2.5 yrs ago...and I STILL get people asking me..."are you ok." OR......" your the one who had breast cancer right?..." <sigh>
And then this...this HAS to be the best,............. they immediatly look at my breasts.
Like, they are looking for my breast cancer.
Um..what the h*ll are ya lookin at?!!!!!!!!!
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I have felt like I've been doing really well until today when I had a mammogram on my lumpectomied breast. I saw my onc two weeks ago and he checked the breast and scar (which is lumpy) and said he wanted a new "baseline". So I went and the tech made me wait after in case the radiologist could have a look at the image and give me any info. He did and the tech relayed the info to me - looks like all he can see is residual scar tissue but will need to compare with last mammo films to say properly. They can't find my films. Of course now they have gone digital and don't use films. I think the tech did this to be able to reassure me. But I'm not sure I feel reassured at all. Did she see something that required attention? I don't know.
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I am with you on the whole body image thing. I have been so depressed because I have gained 20 lbs., being bald and not having any energy/strengh to do anything. I just finished 6 months of chemo last week and start radiation next month. I just went back to work last week and it really wears me out. I am not me anymore and it sucks! I am worried everyday that it might come back and my onc. said no scans unless symptoms so that scares me even more. How do I know what to look for without worrying about every little thing. Everybody thinks I should be so happy since I am done with chemo now and I am but I still have radiation.... I am not done yet. The one thing that really gets me is everybody knows someonebody who has/had breast cancer and I have to hear all about, even the ones who passed away. that really %&^**^$ me off.
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LL
I so agree with you, it has been 2 years for me and just today a MOM at my son's school asked "how are you feeling"?, what is that about? Its like theay all expect me to croak any day.
The other thing I hate is someone always telling me about their friend that just died of BC, this is so stupid, and it happened the other day and my friends shhhusshed her and I was the ONE that was being shushed about, do you know what I mean? Like I was too fragile to hear this and they were giving her sideways glances and shushing her so as not to upset me, I hate being treated like a victim. I just want to be the old strong me that was comforting people not the victim of the pity party. I hate that i am "that" person.
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I always have a strange feeling when Im in a group that people are wispering about me....
I hate having the breast cancer label on my forehead.
Maybe Im just paranoid...but still.
I also have body issue image. Thats bad too. I confined in my mother all the time. she is always quick to tell me that I should be moving more and eating less...blah..blah. And hows she is 56 and in menopause and was able to loose 25 lbs....so why can't I?!!!!
Um....mom? Im 32, in menopause and on Anti hormone pills. I deal with lethargy...and Im looking after a 4yr old all day...everyday. My bones feel like a 90 yr old ect..ect. The weight does'nt come off like it should/use to.
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Hi Shanagirl. Beleve me I know,
When I was in Fla for my Tx. I removed all the mirrors in my apt, because I looked so god awful. I was in good shape " before" and then became uncle fester. This avatar pic of me is one of my first outings, fake hair, fake eyelashes, boobs, I was petrfied that I would never be comfortable in how I looked and how I felt.
what I can say definitively is that the more time " out " the easier it becomes. I take alot of comfort in how many of us are really doing well. I hope soon you'll be there too!
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Oh, yes, the "Uncle Fester" days . . . I always said that as a woman you can be fat OR bald, but not both at the same time! It does suck, big time and I feel for all of you who are fresh out of treatment!
My cures were oncology rehab and a personal trainer, which fixed the achy joints and bones, and just plain time. My curly post-chemo hair is much closer to pre-chemo now, but it took five years or so to get there.
Hang in there!
Hope M.
dx Stage III May '03
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Hi,
I agree with you 100 percent that it seems like we are not ourselves anymore. I was diagnosed last Jan and finished radiation at the end of Nov., had a hysterectomy in Dec and finally went back to work in Feb after being out for a year. I hate the paranoid syndrome that we are in and cant imagine if that will improve. My Oncologist told me on the last visit that I just needed to get on with my life and quit worrying about something that is not even there. Easier said than done. The whole body image thing kills me. I was small before this happened and lost about 25 pounds during treatment, now weighing in way under 100 pounds. That is just as bad as gaining weight, the skin just hangs off my body and I look like a swiveled up 90 year old lady. My hair was always long and now it being short and soooo curly that you cant pull the curls out of it. I absolutely hate it. Everytime I look in the mirror I am still trying to figure out who is looking back at me. I also hate for everyone commenting on my hair and of course everyone just loves it. I am just hoping with time I can find the old me, I liked that person.
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Jenn3 ~ You're right, the days that I feel even more down are when I'm feeling all the post chemo, post surgical, post rads, and Arimidex pains. That does affect my mood more.
Tammy ~ I hate when they ask "are you done yet?" or "they got it all right?" and I am not more happy that I'm finished chemo and rads' like they say I should be. I'm more paranoid now because I'm thinking I have to do this for the next 5 years to reach a "goal".
lexislove ~ tell your mom that you are more in menopause than she is right now and you've just gone thru cancer.
mmm5 ~ I am really self concious now about being known as the breast cancer girl among everyone who knows.
Linda ~ LOL "Uncle Fester" too funny. But that's exactly who I felt I looked like.
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Forgot to add one other issue, I went for my first mammo in Jan since treatment. They decided to bring me back in a month because they saw a small place on the opposite side from my cancer. I went back last week and now go tomorrow for biopsy. Keep me in your thoughts and prayers, I sure dont want to do this again this year.
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Kandy ~ Oh sweety I will have you in my thoughts and prayers. I just hope you won't have to repeat this nightmare again. That is my worry with my remaining breast.
Hope ~ Thanks for the ecouraging words. I think that would be great oncology rehab and a trainer. I've sort of made up my own kind of oncology rehab. It's called walking on the boardwalk by the ocean at a nice brisk pace with DH and on the days I cant go I exercise with my "trainer" on my DVD.
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What?! You can't be fat and bald at the same time??? Back when I took AC, nobody told me. I musta broke the rules cuz I was fat AND bald all at the same time!!
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Shanagirl....4 years ago today I had my bilat.....it just plain old s****!!!! I struggle with body image, depression, anxiety, insomnia and the list goes on....not sure what is from BC and what is from AI's. I've been on AI's for 3 1/2 years....and I don't want to stay on them any more. QOL has to count for something. I want to live...I mean LIVE for whatever years I have left.....I feel like I have only been existing...going through the emotions for the past couple years....I take so many Rx....take on thing after another to combat the side effects. Last night I didn't take anyting for sleep and went to bed after midnight....2 hours later I was still awake...so took 2mg ativan....My life seems to be guided by pharmaceuticals!!! whoever thougth at 53 (going on 54), I would be taking more Rx than my mother does who is in her mnid 70's. I see my onc in 2 weeks and have a list of questions for him....and I plan to tell him that I WANT A BREAK from these darn AI's....right now, I don't think I can go another 1 1/2 years, never mind go to 10 years. I know my onc won't be happy with me. BC has taken so much away from me......I'm still angry and trying to deal with it all and find the "new me" that I like. I know that many of the side effects that I have might be due to middle age and lack of hormones and menopause, but I really think it is because of chemo and AI's....but give me a chance to find out by giving me a break...its funny all the docs I see as well as my therapist really are pushing me to stay on AI's....even my therapist....I think the fear for them that I could die is not something that they can deal with....well, we all die, just a matter of when....but I want to LIVE when I am alive....I want to enjoy live, feel feelings all across the spectrum....I want to laugh and smile, be happy, silly and just enjoy life. I've been gaining weight and not happy about it...but its because I keep shoving food in my mouth...and my onc thinks I am crazy to complain about my weight...yes, I am thin, but feel fat...I know tonight I am eating for the sake of eating as I enjoyed a little too much red wine!!!! but in a way I love it....beginning to ramble so going to just send you a ((((((((((((((Shanagirl)))))))))))))) Karen
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Karen, I loved your ramble. I feel the same way. But I've only just started AI's and hoping to keep from recurring. I know our whole quality of life changes after BC and thats what it takes from you. But Karen I worry if you go off AI's and suddenly get distant mets, than what? You'll be back to living on more drugs. It's a no win game.
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Faith ~ NO GIRL I don't want to be FAT & BALD, not when I've always been thin and long haired.
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Issues, issues... Let's see, how's this?
- Feeling shortchanged by life and betrayed by my body
- Hating that pity look that I get sometimes
- Not sure whether I should get my career back on track and when or whether I should just enjoy life with my kids as a stay-home mom but be miserable that everything I worked for was in vain
- Unsure of when to let go of my wig and out myself with my short, curly hair
- Unsure of when to start my reconstruction (6 mos after rads? Should I wait more?)
- Sad that my mother-in-law has not visited me a single time since my diagnosis, making me feel horrible about getting cancer
- Sad over some friends that disappeared
- Unsure about whether I should live every day as if it's my last or whether I should live with the assumption that I'll be here for a long, long time
- Feeling bad about myself when I have resentment feelings that I never had before, such as resentment when I see people living unhealthy lifes but I was the one that got cancer, not them (you know, the why me? feeling which I'm trying hard to but not succeeding at changing the thought to the why not me? It could happen to anyone... It happened to me, so move on already!)
- And the major one that hurts me deeply: worry that I'll leave my kids without a mommy early.
Of course there is a list of positives as well, but I'll leave that for another day... Feeling kinda sad today.
Hang tight everyone!
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bejuce ~ Amen Sista!!!
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Yep I really did feel like my body betrayed me and when the onc told me I was stage 3, I felt freaked out because in my mind I was thinking there is no stage 5 and how much time do I have before it starts to become stage 4 with mets. Am I lucky if I make it for the next 5 years? I had all these questions and fears and still do but then I get encouraged when I see all the hope that is given by the 5+ stage 3ers, and the stage 4 ladies, one of which is 17 years. So what I'm learning is that stage 3 isn't as bad as i thought it would be. (hopefully
)
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The joys of BC - not only does it take from us physcially, but mentally plays all sorts of games with us. And..........I have to say the games are not fun!
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Shanagirl~ I was told the energy level got better one year after treatments end and it really has improved for me. I don't feel totally back to 'normal' yet but looking back, I know I am doing better. Our bodies have been through so much...it just takes time. Can I ask what strenth training DVD you watch? I love walking but need to start some strength training too.
To reply to a few other comments...Last Memorial day was my last day with my wig and it was just time one day! My hair was still very short but the wig was starting to bug me when my hair was coming back. Now 10 months later it looks like it did before. I'm back to haircuts and hilites!
My biggest gripe is getting asked all the time "are you well now and all done with everything?'. I so wish I could say yes but we know it's not that easy. I have my 3 month appt with my onc this week and that's always a reminder of all that has happened. Going to the chemo lab last week for Zometa makes me feel bad for those getting chemo. Taking my Arimidex and having achey joints isn't fun. This is all our new reality that none of us asked for. It sure helps to have people on these boards we can commiserate with!
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ktn, I really do enjoy walking also. The workouts I do I just turn on the "Free on Demand" cable channel, and there are a number of different types of workouts to choose from. Some days I do cardio, others abs, and other days I do strength training. I take Arimedex too, and the pain in my joints make the workouts harder, but I 'm determined to lose some of the chemo lbs I put on.
Barb
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