Stupid comments ....
Comments
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ksusan... LMAO. That is the perfect comeback! I have got to remember that one! Hehehe
I had someone ask me today why I looked so tired. My reply: Oh I dunno. Maybe fighting Cancer has worn me out just a bit. What do you think?
Really? Folks gotta tell me I look tired? No duh! I AM tired
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Hi runor. Since I never got clear guidance from the surgeon, I can only tell you what I think about the shoulder problems. I never felt like my boobs were innocent bystanders in all this. 40 years of benign biopsies finally culminating in cancer had turned them into the enemy. I was glad to see them go and planned to live flat and fabulous.
I think it has to do with the change in weight distribution. I had very large breasts as well. Part of it is probably my own fault, because I was warned when I was fitted for breast prostheses that if I didn't wear them I could end up with shoulder problems. Of course I disregarded that advice because I reasoned that some women are born flat and they are fine, so I thought I would only have to adjust to having no breasts. I didn't wear them for the first six months after surgery, and that's when the damage was done. Women who are flatter to begin with don't have that major change in weight distribution and posture, and that might be why a lot of them don't have the same problems.
In my case I think the tamoxifen also plays a role because I have been more prone to injury in general since I started taking it. The orthopedic surgeon says it's a common problem he sees in women on tamoxifen, and I also have some kind of dysfunction of the soft tissue (muscles, tendons) that my physical therapist said she sees in tamoxifen-taking patients. I don't think that happens to everyone, but I have run across enough people on these boards to believe that I was one of the lucky ones.
The shoulder exercises help a lot and I was mostly cured in the first round of PT, but I got busy and lazy, slacked on my exercises, and the pain and stiffness came roaring back worse than before.
What I think is that you could probably avoid problems by wearing breast prostheses as soon as you are able after surgery. You get used to them, and I have even learned to appreciate that moment at the end of the day when I get to take my boobs off! Most women don't get to say that! Also, they do give you range-of-motion exercises after surgery. Don't slack on those, and you should probably continue with shoulder stretching and strengthening exercises for life.
If you do decide to have your breasts removed, you should try to get into physical therapy, for as long as insurance will pay for it. At my breast center everyone gets referred to PT after mastectomy, but that might not be the case everywhere. They only treated me until I got my range of motion back though. I think it should have been longer, or at least I should have been advised to continue a program at home indefinitely. -
Hello ladies, this is my first post on the forum but I have been coming to this forum ever since I got my diagnosis in January of this year and I must say that it has been a Godsend with the wealth of information and support that I have seen on here and it has also saved my sanity many a time!! So firstly I want to say a big thank you to all of you wonderful people😊
As to regards to stupid comments; a friend of mine ,(who has been so supportive during my cancer journey so I can’t in honesty be too mad at her!!), has asked me at least on 2 occasions if I am depressed and both times I have said to her that while we all have our off days where we feel sad or a little down due to the treatment and it’s side effects and just the whole reality of having cancer ; no I am not depressed, (not to say that I won’t be in the future but I’m not at this period of time ). So the other day she asked me again but this time she started the conversation with, “ I’m just going to ask you a question, I mean I don’t know how you feel and you can tell me the truth or you can lie so I’m just asking; are you depressed or do you feel depressed?”. Once again I said no I’m doing fine and she said , “ maybe you are dealing with it so well because you didn’t get a mastectomy and didn’t loose a boob”. As you can imagine, I was speechless!!😳
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Hi Indigo, and welcome to the complaint zone. I agree that most of the time it's not worth holding lasting grudges against most people who make stupid comments. The majority probably mean well and don't know any better. Some of the things we hear around here are completely inexcusable though.
In the case of your friend, I'd say she's probably projecting her own insecurities onto you. She would feel depressed, so she worries about you. We also bring out the fear in others, because once it happens to someone you know, you're sort of forced to consider your own mortality. That's where a lot of the victim-blaming comes from. If they can convince themselves you did something to deserve it, that makes them feel safer in some weird way.
I didn't get depressed either. I expected to because I have a history of that, but somehow breast cancer brought out more of my positive traits rather than the negative. For that I am grateful. -
Hi Solfeo, thank you for the welcome😊.
You hit the Nail on the head about my friend and her insecurities and fears .
I think that Maybe I need to start a conversation with her about how she is feeling, What you said about people being forced to face their own mortality is spot on too and a cancer diagnosis is definitely tough on care givers and loved ones.
It’s so great to hear that your positive traits shone through at such a difficult - sometimes we can surprise ourselves with an inner strength that we never realized that we had!.
I know that depression after a diagnosis can hit at any time maybe even years after diagnosis and treatment and if and when that happens I’ll take the appropriate steps to deal with it . Right now I’m in a good place and I wish that she would just celebrate that with me rather than think that I am not being honest or that I’m in denial
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runor-what solfeo says is right. And the tamoxifen does make joints achy which just exacerbates the problem. If you opt to go flat, good posture, wearing your prosthesis, doing your PT, and moving those achy joints are important. If you opted for DIEP flap recon, no one would look at your nose...they’d be too busy marveling over the nice new breasts & flat tummied profile. 😀
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Interesting conversation on the effects of BMX. I chose that route and live flat. Don't even wear prostheses when I dress up. My size D breasts weighed a little over three pounds combined weightand I haven't had a problem due to the surgery. Did experience phantom weight sensation after the surgery but that eventually stopped. Three years after surgery developed frozen shoulder but that was due to bursitis and arthritis I developed in that shoulder but looking back I believe that was starting before my BMX.
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still I don't see my doctor, I will on sunday. also I don't know about the treatment plan. I try so hard to understand my cancer by asking and reading. for example, I don't know what is the meaning of 2/24 nodes in some signature of the BCO here ! how can I know my nodes numbers, all what I know from my report is that I have highly suspection of multicentric disease and metastasis reach to my auxiliary node, and the doctor took biopsy from auxiliary node to check it in pathology lab. I'm lost dear, feeling bad, most of the people not understand my feeling and no close one has same cancer like what I have. so, I feels lonely and scare to sick too much and death. all my family members become doctors through whatup and internet articles, eat this food, no need to eat that and so on..
I read one comment here if you have positive node, sounds bad, may i face a lot of problems, survival rate will decrease, treatment will be more aggressive, and treatment plan will be more long that people not have nodes involved. when I read metastasis or lesion I feel scary and sad. its bad bad bad words, I hate it. so, when I read high suspection for metastasis in auxiliary node and multicentrc disease and search about that, no enough comments and help, however, my mind told me this is rare cancer and also you are alone. oh my god! my life not ok, I don't start anything, no treatment plan, more than 7 weeks from the first diagnoses. I think I'm late, I waste my time to do double test in two different hospitals, sometime I think its better to die, I will try to be positive but its difficulty. I'm dealing with monster cancer, unknowns futures, I am 49 years, I think this disease comes in 70 or 80, not now. I don't know what the doctors will do to me.
I don't know what is the damn meaning of positive node and how it effects my life and treatment plan, DO I will face a lymphedema if the surgery take it out? how many nodes the surgery will take? how can I resist the chemo if the doctors include it in my plan? what is the fuckin multicentric means? what is my suggest stage?
I did bone scan two times within 23 days only between the first and last, the first result shows I have lesion in my tibia, single small active, and normal bone scan, when I did bone scan yesterday, the result shows different, I have uptakes in both knees and shoulders, and doctor write (likely to be arthritic change), and slightly heterogeneous in my spine (likely to be stress changed). and at the end he advised to make MRI because its more sensitive than bone scan, also said bone scan may not detect metastasis well! CT scan not show anything related to bone, what I know is the ct scan also is a powerful tool to check the bone and whole body, why the result of bone scan vary within 23 days? my mind said, the cancer may spread, then I cry about delay of the doctor, my mind alwayes takes the worst scenarios.
I'm grade 3, positive receptor and negative HER2, IDC, around 2.5 cm tumor, and 1.8 cm auxiliary enlarged node with high suspection of metastasis on it.
sorry to write all these lines, but I'm really scare and feels bad and lost in the dark. .no guides, no survive maps, no clear flashforward to the future.
thank you..
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Hi Hope99!
You may find some helpful information on the following articles of the main BC.org site:
Hope this helps!
The Mods
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Hi Hope99. Every single one of us came to these boards scared to death and having little understanding of what is happening and what it all means. There is not a lot I can say to take away the fear at this stage of the game, but I can promise that it will get easier when you have enough information to clearly understand your diagnosis, and you have a treatment plan in place. You will always find someone here you can vent your feelings to, and to help you sort through the overwhelming amount of information. Keep us posted and we will do our best to help.
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Like everything else related to BC, not everyone will have every possible complication following mastectomy, but arm and shoulder problems are common. I wasn't warned in advance of surgery, but I ran across this article on BCO once it started happening: Arm/Shoulder Problems Common After Breast Cancer Surgery. There seems to be a correlation with how many lymph nodes were removed, but I only lost two on the cancer side, and none on the prophylactic side, and I have problems on both sides. At this point it's worse on the non-cancer side.
I had to actually sign a release at my breast form fitting saying I understood the possibility if I didn't wear them consistently. I could kick myself for thinking I knew better than they did, but it still could have happened even if I had worn them from the beginning.
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It is interesting how some of us are affected and some not with the shoulder problem. My BS put no restrictions on me about using my arms yet the discharge nurse told me not to raise them higher than the incision line. I decided to use my arms but reaching carefully. Mentioned it to my surgeon and his comment was "how did she expect you to brush your hair." I'm wondering if being too cautious can set us up for the problem.
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I also wonder if being too cautious can lead to issues. At 8 weeks post mastectomy I still didn't have full ROM which is what my BS and MO were shooting for. At my next appointment, I complained to my BS that I still struggled to reach high. He asked me to go to the wall and do the "finger crawl" as high as I could. I did and as I stood there, he walked up behind and gently pushed me against the wall causing my arm to go overhead. I was shocked and cried out "Oh!" but amazed that it didn't even hurt! I said "I didn't know I could do that!" and he said "Now you know you can." He said we get too cautious sometimes and while I kept saying I couldn't do it, he proved that I could. He said to go home and mark a spot on my wall and pass it by an inch every day till I was back to "normal". (He also muttered something about calling down to the PT department and doing a little "retraining".) When I saw him a couple of weeks later I was 100%. This may not apply to everyone, but it worked for me. I'm a bit of a fraidy cat sometimes so I need some gentle pushes every now and then. Good news is...thanks to BC I've learned to be much more pushy!!
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Hope99: You are overwhelmed right now, and feeling very scared, as we all were when first diagnosed.
May I suggest a few things:
1. Take a friend or relative with you to see the doctor Sunday, let them drive you to and from in this emotional state, you do not need a car accident on top of everything else, due to distractions and worry.
2. Write down your main questions and have your friend take notes to help you remember things, and read any brochures or handouts they give you, and some docs or their ancillary personnel will even sketch out things for you to review, or even let you record the session on a iphone, (with their permission), to help you later rereview, remember, and process.
They will probably talk to you about surgery options, chemo, and radiation, depending on various things. It will all be too much to take in at one time, so plan to take it in slowly.
3. Allow time to make sure you understand everything important and questioms are all answered before agreeing to get work done on you, and get the best and most experienced breast cancer team you can in your area.
4. ASAP, if you have not already done so, call your primary care and talk about your anxieties. You may be a candidate for temporary anxiety medication, to help you get through this toughest period. You need enough sleep, rest and ability to focus on information they will give you. Do you have any contacts in church, or community, other than family, who could help support you emotionally and without judgment?
I am so sorry for your perceived loneliness and the terror you are going through. As others have said, they know the feeling, and it will get better.
I wish you the best. 250,000 women per year in the U.S. are diagnosed with breast cancer, and most do well long term with all the different treatments available. You are *not *alone.
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My memories are kind of vague, but it seems like they told me to take it easy just until my one-week follow-up to make sure the incision was healing. I could still brush my hair when I bent my arm - they just didn't want the whole arm raised. Then I started on the aggressive stretching program soon after that, but I can't remember how the drains played into all this - if it was before or after they were removed. I do remember I got my full range of motion back sooner than everyone expected, and I didn't even necessarily do the stretching as many times per day as they said.
My left shoulder was almost completely frozen in June of this year, but I have most of my flexibility back. Now I do my PT exercises religiously, because not having use of both shoulders was a serious burden, and I feared that situation was permanent. I still have pain with certain movements on the left, but the right is almost back to normal. I shall never slack again! -
They had a PT come show me exercises before they released me - like putting your fingertips against the wall and slowly walking them up the wall. I really didn’t have any trouble raising my arms after a couple of days, but was careful to do it slowly.
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Indigo - I agree, your friend is probably imagining how SHE would feel if she were in your shoes rather than actually listening to you when you tell her how you feel. You said "Right now I'm in a good place and I wish that she would just celebrate that with me rather than think that I am not being honest or that I'm in denial", which I think would be a brilliant thing for you to tell her.
The funny thing about tough times are, you never can truly know how you will react until it happens to you. You can imagine all day long how you will respond, but the truth is, your imaginings aren't worth squat. The real test is when you are the one in the middle of it all. I will never forget someone a long time ago said to me "God gives grace to those in need, not to vain imaginations!" That has proven true over and over in my life. Things that I thought I would never ever be able to handle that I saw others going through, I found the grace and strength to go through when they happened to me. I was very surprised that I have not been depressed or even really that upset about my cancer diagnosis. I just went into "get things taken care of" mode right away and have been really upbeat and positive the whole time. Other times in my life, I got very depressed over a lot less. You just never know. -
Fear of Cancer Return: Distinct From Depression and Distress (requires a free Medscape login)
"As the number of cancer survivors increases, fear of cancer recurrence (FCR) has become a growing clinical issue — it can be long-lasting and can negatively affect quality of life, use of healthcare services, and adherence to follow-up recommendations."
Stupid study if you ask me. They could have just listened to the concerns of their patients, who I am pretty confident have been telling their doctors about this fear since the beginning of time. Now we need years of "follow up studies" to come up with "recommendations" before they will actually do anything differently, like take our fears seriously.
This part made me chuckle though: "Within this group, 34% (n = 358) reported no FCR, 54% (n = 547) reported low FCR, and 11% (n = 127) reported high FCR."
Who are these super human 34%? Oh, I know - they are the liars.
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Solfeo, maybe those 34% are not very educated. My BS cheerfully told me at my follow up post surgery "now you are cancer free". I wanted to slap her, but I bet some people do a happy dance and just move on. I wish I was ignorant sometimes.
Rebekah
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My radiation oncologist asked me if I knew why I was there.
Uh...who in the name of god gets here and doesn't know why they're here?!?! Apparently, lots of people. Lots of people can only cope by shutting off their ears, pretending to not know, deliberately forgetting and being confused. I KNOW people like that. They have no idea what their diagnosis is, what tests they are waiting for or what their treatment plan is. It is a way of coping. Not my way, but their way. And I bet anything that it's those 34% Denial is a River In Egypt types who make up that statistic.
I agree Solfeo, stupid study that employs people and applies for grant / research money based on nothing. What is shocking is that someone will GIVE out grant money to study Fear of Death. Who knew humans feared terminal illness, quick, let's study that!
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It is suprising to me. I know every single detail about my cancer committed to my memory. I asked my neighbor what kind of breast cancer she had, you know idc, ilc.. she didn't know. She also never asked about the treatment she was getting. I guess it is a way of coping, I chose to read studies and learn what works and what doesn't.
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I asked a colleague -- and granted, it was about 6 years ago for her -- but she didn't know what type she had. LOL I feel like I've taken a med school course in BC with a side class in ILC.
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It scares me that so many people might blindly take the word of their doctors about anything, when I have caught mine giving me misinformation so many times. I discovered another misstatement of fact from my MO just the other day. Back in the beginning, in response to a direct question he told me tumor size was taken into account in the Oncotype DX calculation, which influenced my decision about chemo. The recent study that came out comparing the prognostic value of the different predictive tests clearly stated Oncotype uses molecular signature only. I don't know if it would have changed my mind because benefit from chemo was low, but I think I would have sought additional testing to get a better handle on my individual risk. I just hate knowing I made any decision without having ALL of the facts, and it pisses me off that I can't trust my doctors about anything, because every one of them has proven themselves unworthy. I feel like I have to know everything or die, and it's exhausting.
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at my first meeting with my RO, she told me , “the good news is, we can cure you”. I believed her because I knew nothing about breast cancer. I figured I was home free! It wasn’t until I started reading on this website that I realized none of us are home free
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Capecodgirl, I can't believe I'm about to say this because it's one of the things that drives me nuts when non-cancers say it, "We could all get hit by a bus tomorrow", but the truth of the matter is that that is, actually, sort of, the truth.
I think it is WRONG to tell someone they are cured of cancer, because just as you are finding, reading this site paints a different picture. I see people who are diagnosed with DCIS, hit it hard and show up later on the mets threads and I think, how the hell does that happen?! The ultimate sucker punch! So, cured? Not frickin likely.
You are very new to this. You are raw. We all are raw. We all are jangled and rattled and walk around in the shadow of death in a way that we never used to.
For me, over a year in, these are the thoughts that I am having lately. An attempt to find a balance and find a better way to move forward. Having cancer did NOT increase my chances of death. My death was 100% guaranteed the second I was born. Cancer did not bump that up to 200%. It's not like I was going to live forever and then boo, sucks to be me, got cancer, now I'm going to die and everyone else is going to live forever. No. Death is the one thing guaranteed to us all.
But knowing that HAS NOT made me feel better! We all wear a helmet of stupid that protects us from scary truths like Death and cancer knocks that helmet right off your head and there is no way NOT to know that we are ALL on borrowed time. Cancer has shit all over plans I never even knew I had, like growing old with my husband, or maybe seeing my kid married with children of her own. I might live to see those things, I might not. But before, I never THOUGHT ABOUT IT and thinking about it, man, it sucks hard! It is SHITTY having this radioactive cloud of misery first and foremost in your brain. It feels hopeless. Draining. Pointless. Terrifying. Angering. Frustrating. But mostly, for me, a deep, deep sadness that hurts. I am in mourning. I think we all are.
I feel that this KNOWLEDGE has left me in a messed up bloody heap and I have to get myself to my feet and deal with the mess and the problems and Act Like Nothing Has Changed. Because, in truth, nothing has changed. Chances of death are 100% the same as they were when I was born. Only now I Know About It. I know HOW I might die. I know WHEN I might die (if you read recurrence statistics). I worry that each pain and ache is the Angel of Death swooping in to sit in the living room and eat chips while I get mets. The mental state more than the physical state is the current problem. But that is subject to change without notice because as you have discovered, with cancer, the physical can turn around to bite you on the ass and become an even bigger problem in an instant.
I do not like the word survivor. In fact, I HATE it. It's wrong. I AM A CANCER CONTESTANT. I was dragged into this horrific game show against my will and forced to open door 1, door 2 or door 3 and once you're in the game show, you never truly get out. The only way to get out of this particular Cancer Contestant game is to die of something else.
So, we could all get hit by a bus. Only some of us are burdened with KNOWING about it, where before we really didn't give it much thought. Some of us might die of cancer and some of us might die of something else. But we are all going to 100% be dead, no matter what. And this messed up soup of thoughts is boiling in my head and I am trying to figure out how I ought to feel and how I ought to LIVE with this new truth and reality on my plate. I hope you can make sense of your muddled soup, CapeCod, I think it's what we all are trying to do.
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Well said runor......
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ready2bedone - sorry for the late reply . I agree; I think that I should have a conversation with my friend just so that she has a better understanding of where I am coming from. She has been a wonderful friend through this whole unexpected journey and I don't want her to feel as if I'm criticizing her so I'm going to have to choose my words wisely!!
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For lack of more precise terminology there are "better and worse" ways to die, and a slow, painful death from cancer preceded by possibly many years of quality of life-sucking treatments is one of the worst. That's why I worry about it more than getting hit by a truck. It's not the same at all, but I do avoid stepping in front of trucks when I can.
I know that isn't a very inspirational thing to say, but I'm just a realist who doesn't like to mince words. I actually feel pretty good about my level of fear of recurrence, which I would classify as low even though I could point to several reasons that would justify more worry. After almost three years it's still there but I don't dwell on it beyond doing what I can to modify my risk factors.
I hope it is more inspiring when I say that the fear does lessen over time for most people. Most days I even manage to appreciate the wake-up call cancer provided that gave me the motivation I needed to change my life in numerous positive ways. Like losing 153 lbs. for example. Never would have happened without cancer, which probably means it is very likely I would have been hit by the proverbial truck in the form of a heart attack, sooner rather than later. It's a different way of thinking about it, but cancer may have extended my life regardless of how it eventually turns out. -
Solfeo, I think you are right. The passage of time eases the rough edges. Sometimes I think that's a bad thing. I don't want to ever be as blindsided as I was the first time. I have pretty much zero risk factors for getting cancer and yet here I am!
Oddly, when someone tells me they were shocked to hear their Grandfather dropped dead pruning the roses my thought now is, lucky bastard. I want to LIVE and not dwell in this thick soup of agony. To do that, I have to accept death. Plainly, bravely, clearly. Obviously a quick death would be easier for me, but maybe having time to say goodbye and get my affairs in order isn't a bad thing either.
I don't know. I really don't know. I just know that nothing is the same. And now I am going to turn on the stereo and dance like a fool because I am stuck in the 80s and it brings me joy. For a moment anyway.
Edited to add, Bohemian Rhapsody by Queen, HELL YEAH!
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I love "cancer contestant"!
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