Bouncing Back
Hi again girls,
Glad to report that I got the call from the doc BEFORE the long weekend (especially since I had comitted to work for the Grand Prix of Baltimore this weekend), although if things had gone sideways I'm sure I wouldn't be saying the same at this point. Although I'm still having pain the relief in knowing that there wasn't any sign of cancer took a HUGE weight off of me.
After a few scares like this I have absolutely come to realize that the stress and anxiety and the worry actually makes the pain worse. I tend to focus and dwell on it, pushing, poking, whatever while worrying. I can assume all that doesn't make things any better.
It's just so hard to not know what would be "normal" for a woman my age if I hadn't had cancer. I wish we could all just forget it ever happened. But it certainly IS like having PTSD. Just like people who've been to war (which we have in our own way). Once that seed, or trigger is planted all the flashbacks and fear take over. It's terrible.
My husband suggested I get a new therapist and I was mulling over if I need to go back on an antidepressant again. I had stopped taking one a few months ago and thought I was OK. I'd really like to not have to add more chemicals to my body if not necessary. I also have thought about going to a holistic place I've heard good things about and perhaps trying that before going back to the pills might be a good option.
Just curious what some of you do to push back that anxiety and fear when a new pain/issue pops up.
Take care everyone!
Sharon
Comments
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Sharon, glad to hear that you are OK. At one point my doc told me to look out for skeletal pain. I explained to him that I have bad knees and a terrible back and that the pain associated with this comes and goes and changes from time to time, so either I could drive myself nuts or else ignore it like I usually do. He saw the problem and told me to ignore it.
As for the anxiety I try to beat it back as best I can, but it does get to me sometimes. For me walking helps, hanging with friends and if it is really bad a small bout of shoe shopping
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I understand and agree with what you're saying Sharon. To be honest I guess I ignore it until I have an issue. I never did therapy, maybe I should have, the last couple years might have gone better. I went back to work a little over a year ago and that has helped alot. I feel somewhat normal again and I just try to stay busy. "Idle hands is the devils playground" well, in our case "idle mind"
I recently started Effexor for the hot flashes and I do like that it helps me with irritability. But hate that I take yet another pill. It helps me when I remind myself that that pain/ache was there before my last scan and the scan showed nothing. But if its a new one that's a different story...I do freak out and search Dr Google. I hope you find whatever it is you need that puts you at peace during these times.
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That's good to know about the Effexor Jenny, although that drug does worry me as it does have pretty heavy withdraw symptoms if you forget or go off of it. I know someone that happened to. Sounds as though it's been good for you, and I DO get hot flashes as well. May have to inquire a bit more!
Also thanks Momine for your input and advice. It's vicious cycle you know. Being down and not wanting to get up and go. Sometimes I just force myself to go and it does get better.
Take care,
Sharon
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I think the fear and anxiety is why I search BCO so compulsively. I do all the right things exercise, work, friends, marriage, kids etc (OK I can not lose weight despite a pretty good effort). I have not found the answer. I go to a support group, but sometimes I think that it just increases my anxiety. Plus I get frustrated when people with DCIS think their risk is the same as mine. It's been three years. A few weeks ago, a patient of mine told me her stage 3 breast CA recurred with mets to spine after 22 years. Are you f***ing kidding me? This is our reality. Sometimes I think the trick is simply to die of something else before the breast cancer recurs. I experience PTSD on a regular basis.
Sharon, I am so glad your scans were negative. Maybe other people have more wisdom than I do as to how to live with this disease. Sometimes I wish I were more religious and I could be at peace if I die in the next few years. But, I am not at peace with that at all. I want to live another 30 years.
Sorry to not be more help. It helps me a bit knowing you are OK
Elizabeth
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Sharon, I'm so glad you're OK. Susan Gubar, an ovarian cancer survivor, had a piece in the NY Times just the other day about how we're always wondering "Is it back?" I try not to worry too much because if it does come back I don't want to regret all the time I've lost in worry...does that make sense?
http://well.blogs.nytimes.com/2013/08/29/living-with-cancer-is-it-back/
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Sharon,
Also, so glad you are OK. The fear of recurrence is with us always. It IS a form of PTSD. Every ache and pain brings on a flood of anxiety. I am sorry we all seem to have this common issue, but it is so helpful to know others are on this journey also.
Wishing all peace and good health,
Cindy (Stage IIIa)
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I will chime in here .. Sharon, so happy no C.. I have learned to cope a little better by accepting what I just can't change. I hate that we all live with this fear! I will say I talk to God a lot!!! For me it's the only way I can get through the fear , giving it away ... I can't carry it so I let it go.. Also sometimes I just live in denial all together!!! And I like Jen take Effexor , and when the anxiety affects my family I will pray really hard and take the occasional Xanax ! I know lots of help I am .. I hate herring those damn stories about the 22 years later stuff! Look In 22 years from now , I will be older lived a lot longer then I ever thought I would .. Hopefully see my kids get married and be married for 46 years!! I will take the 22 years!!! There will be a cure by then I pray!!!! Find peace in the day, dance in the rain!!!!!! All my love to the strongest women in the world!!!
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I will chime in here .. Sharon, so happy no C.. I have learned to cope a little better by accepting what I just can't change. I hate that we all live with this fear! I will say I talk to God a lot!!! For me it's the only way I can get through the fear , giving it away ... I can't carry it so I let it go.. Also sometimes I just live in denial all together!!! And I like Jen take Effexor , and when the anxiety affects my family I will pray really hard and take the occasional Xanax ! I know lots of help I am .. I hate herring those damn stories about the 22 years later stuff! Look In 22 years from now , I will be older lived a lot longer then I ever thought I would .. Hopefully see my kids get married and be married for 46 years!! I will take the 22 years!!! There will be a cure by then I pray!!!! Find peace in the day, dance in the rain!!!!!! All my love to the strongest women in the world!!!
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I too sometimes get irritated by the DCIS women and wondering why they are having BMXs and recon. It's just not the same risk as we have in Stage III!
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Like Jennyboog, when something comes up and triggers all the old fears...and starts that agony of waiting, waiting, waiting to see if this time it's not going to be nothing...I have to stay as busy as possible. Wallowing in it is the worst possible thing for me. Letting myself get absorbed by other people's concerns keeps me from focusing on my fears.
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Elizabeth19 - I so get what you are saying...the difficulty of finding a way to live with this disease. I am still feeling so numb and post-traumatic disordered.
I think keeping busy is a good idea, unfortunately I am keeping busy waiting for an op to remove a big ovarian cyst...
Love to all stage lll'ers
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I try to stay busy as much as I can. I get knd of irritated with the lower stages too. Or people that try to make money off there cancer that had a easy cancer. Or komen they irritate me too
Been having this pain in left hip....seeing new MO and ortho on friday. Been trying to train for half marathon in nov. Cant run, but trying to just walk. Hurts like hell if I do any serious walking. Gets okay if I just do normal no exercise stuff -
Good article, thank you for sharing, I don´t have any affiliation to God, but I think I manage to not be as focused on little c as the author.....
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Good stuff girls. Thanks. I get the frustration some have with the lower stages, but actually I can understand why some of them want as much tx as possible. Sadly at ANY stage this crap can come back, big and ugly. As for me, there was no sign of C in my left breast, but I couldn't fathom worrying about it, and wouldn't you know it, there was DCIS there! Some say it's a precursor to cancer, some say it IS cancer, but let me tell you, you do NOT want to argue the point with someone about whether it's cancer yet or not. I offended an old friend, whose other friend recently had been diagnosised with DCIS (she also had it) and I said trying to be supportive, she'll be fine, it's not cancer yet (which Lily Shockney for Johns Hopkins told me), and she went off on me! It's ALL very personal, and I really try not to get irriated with anyone with any of these dx.
Thanks,
Sharon
PS, What's "little c" Lily?
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I had double mastectomy for pure DCIS back in 2005. High grade DCIS in left breast only, but opted for prophylactic bilateral back in 2005 so I wouldn't have to worry about recurrence. In April Of 2013 I was diagnosed with invasive lobular carcinoma (stage 3a) so I used to be one of those that would have annoyed the later stage gals, but now I am one of them. Point being, we are all in the same boat. Our bodies created cancer, whether it be low grade/high grade, early stage/late stage. I would love to go back to just having had DCIS.
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Heck, at this point I'd take 22 years. I mean that sucks knowing that we're never out the woods but I'd love to get out 22. That's 22 b-days, 22 Christmas's, my daughters will be grown and etc. And that's 22 years of advancements or maybe a cure. My dr said one time its not a matter of "if it comes back" its "when" so this makes sense. Until then....come on lucky number 22!!
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Sharon,
I only get worried when an ache or pain keeps me from doing something I have planned to do, like hanging curtains or cleaning my basement. If it's that bad a pain, I know I need to have it addressed, and that means a discussion with my onc about a scan.
Those kinds of pains don't come along very often, so I haven't had too much anxiety about a recurrence. My six-month visits are usually very boring, "no problems-see you in six months" kind of visits. We have had a few talks about what kinds of pains would be candidates for a scan. And he does watch my tumor markers which have been in normal range for years now.
However, my visit next month will be my last six-month visit, and just to be sure I am still NED, I will probably push for a scan. I would like to start off my yearly visit schedule with a clean bill of health. I don't know if he'll agree with me, but that's my plan. Then, it will be pushed out of my mind for a year or until a pain pops up that can't be ignored or blocked with ibuprofen.
At 62, I know for sure that most of my aches and pains are age related. All my scans have mentioned arthritic and degenerative joints. As long as they keep seeing them as that, I can deal with it. -
"little c" is my way of disempowering it as so many people refer to it as the Big C....!!!!
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Sharon,
I'm so glad to hear the great news! As for how you deal with anxiety and fear of a reccurrence, I can say it gets better with time. If I have an issue now, I take a deep breath, think about all my past scares, and try to be calm about it. Be good to yourself. If the meds help and don't cause you any bad side effects, consider taking them.
Big hugs,
Bobbie -
Not sure this post will help or not. I spent 11 years worrying about moving into stage 4. I was crazy about every pain and every test. Scan. Etc. Funny thing once I had progression to mets my anxiety calmed and everything got easier. The fear was greater then the the outcome . I am less anxious about stage 4 then i was about stage 3. Nothing has changed that much. Rads to spine, femara and zometa. I feel great.
Fears can paralyze us. The reality isn't always the enemy. It becomes just another hurdle. Not saying it is a good thing but beaware of fears that keep you from living your current life. That is all I got. Best -
I've come to this conclusion. I can do everything right and get mets or reoccurance or I can do everything wrong and get nothing. So instead of letting the cancer control my life I'm living life. That means having cheat days where I eat what I want, don't exercise or have that beer or two. I have never really felt like a person who had cancer but the scars remind me everyday. As for those aches and pains I try and give it the two to three week test before I go over the edge. My mindset right now is to live life and if I have a progression or reoccurance then I will deal with it when that happens otherwise the cancer and the fear is controlling me. Thankfully with 4 kids (well 5 because nephew is living here too), a business and a nice big yard I keep very busy and I really think that goes a long way to helping me cope.
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Hey I'm seeng new MO tomorrow. My last one just well took my copay and didn't even do a good exam. I had to tell them what to do.
I know I need to get Uterine US-never got order for one as baseline for tamox. been on it over year.
need to address my weakening bones. my dexa scan last spring showed preostewhatever bones.
would like to get tumor markers. I had the test to see if I metabolize tamox.
any other things I should ask for? I still continue to have some tightness to rt axillary. its only just annoying. was thinking of asking for pain releaving cream I have seen listed on this site.
I am also seeing ortho for continued pain in hip. I know its related to the walking I have been trying to do. it eases up if I get lazy and gets worse if I try to power walk. hoping to get injection. think its my SI joint. better not push for PT. am sick of that. who has time and money to go there. might try chiro if can't get answer from them.
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Fran,
I didn't know there was a test for the Tamoxifen. Does that check to see if it should be working or if you could have SE's? I've been on it for about 3 years now. The BS noted my uterus is enlarged and to have a consult with my GYN about that, which I have scheduled for next week. I am post menopause so fibroids don't necessarily jive with that. I hope the Tamoxifen hasn't done something bad there. I WILL NOT worry about it until after my appointment. I am anticipating she'll want to do a uterine US, I sure hope not a biopsy. I've had them before (neg) and I have an inverted uterus so it's PAINFUL trying to get in!
Not sure what to ask your doc Fran. My onc is one of those, don't scan types and never indicated a need for tumor markers. I've come to live with that.
And Jenny, I'm APPALLED any doctor would make a statement like that to you! There's plenty of women who go on without a recurrence and end up dying at a ripe old age of something else. Sheesh.
And thanks everyone else for your support and words of wisdom!
Sharon
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Jenny, I'm with pupfoster...that a physician would actually make the statement that recurrence of breast cancer is inevitable, is inexcusible. How discouraging and hopeless!
My mom, who turns 90 next February, had a mastectomy when she was in her 60's and another one in her 70's. No recurrence, and she is proudly "breast-free" as she calls it.
Maybe if all of us Stage III-ers lived to be 150, then all of us would deal with BC again in our lifetimes. I personally am living one day at a time and hoping that whatever BC cells that might be currently asleep somewhere in my body, stay asleep forever.
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I understand ladies....that's why I'm no longer with that dr along with a couple of other things that happened.
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Jenny--glad to see that the other women are saying that your doctor's prognosis is not accurate. I'm same stage as you, similar stats except I'm ILC. I've never been able to get my doctor to give a prognosis, so when I read what your doctor said, I feared that's what he was trying to hide from me. I asked the breast surgeon, and she said "why would you really want to know?"
The other thing that's making me mad is this inconsistency of what doctors are telling us about DIEP and flap recon. My doctor/breast surgeon is constantly pushing it and never talks about how difficult it is, yet women here are having terrible problems with it and going through very long recuperations. Yet I feel that I am being pushed toward it. -
the test to see if you are a good tamoxifen metaboliser is . crap I can't copy and paste. just google that. its cyp something or other. but I think about 5%? of us dont metabolise tamox well..so its not doing much of anything.
mary,I went to PRMA in texas. my recovery was normal. no problems. I dont trust the docs over here. was going to use the john hopkins doc. but got cold feet. the first phase of diep my sx was 7 hrs. stayed 5 days at methodist hosp where I recieved the best care ever. honestly my recovery from stage 1 diep was easier than my initial mastectomy. then stage 2 sx was maybe 4 hrs. stayed overnight. had lipo to thighs...I will not lie that was painful recovery on the thighs. I hate hate wearing compression. I was very noncompliant with that. thighs look fine to me. I think my new boobs look pretty good. I have funny scar. since I used different doc in NYC. she gave me a football scar on initial mast. and then I got a anchor scar on left. but I am working on the scars now. I am very happy I went to PRMA
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mary625
It is very interesting about what you say regarding the DIEP and your doc pushing for it. My breast surgeon is positively pushing me away from it - for all of the reasons you state.
She has not refused my request, but thinks it is a bad idea for me. She has implored me to think about it very carefully.
I have not asked my prognosis Jenny, I found what your Doc said very shocking and very depressing.....
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my MO that I just fired told me at beginning of chemo that I had 30% chance of it coming back, then when it was over it was up to 40%. He also told me I would one day die of BC. I didn't actually hear him say it, but my sister did
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