Why was I stronger DURING treatment than I am now?
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Smart, can I help you choke your idiot bil? My cancer DOES NOT SHOW UP ON MAMMOGRAMS! I had one just a few months before I was diagnosed, and it did not show a honking big 5 x 8 cm tumor. Please pass that along to your bil and any other idiots who want to blame us because we had cancer.
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Smart - Mine didn't show up on either the 3d mammo or the diagnostic mammo and ultrasound - only showed up on the MRI, so I agree with 2Tabbies comments. You showed great self-restraint not typing a reply!!
Bosom - hang in there - so sorry you are struggling right now.
I never really thought about using NED, but I do like that. I tend to say things like, "I had surgery for breast cancer" and avoid the whole remission, cure, NED terminology.
2Tabbies - sorry about your mom, that must be very difficult.
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Mel, thanks. Mom is actually doing better, but she's almost 97 so we can't take anything for granted.
Anybody know if it's a problem going through airport security with TEs? I'm wondering if the magnet in the port will set off their scanners.
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Thanks everyone for chiming in on cancerversary start point. My only problem with surgery date is I also had cancer on my chest wall and in my blood/lymphatic system (yes, it got that far before I was diagnosed). So I guess I need to go with "end of treatment" date - which I can't remember now so clearly. That's a good thing over time - forgetting dates.
I read in a study that IDC and ILC have same spikes in recurrence rates - at 3 year and 5 year milestones. However, ILC was a worse prognosis in the long term since it often was discovered in advanced stages more than early stage. Now that changes with time and advances in detection testing protocols but anything stage III on is advanced. Not that I want to sound like debbie downer, it's just that it makes sense
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You won't sound the TSA alerts with tissue expanders. I had that same concern but sailed through airport security.
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Katarina-you sound like you have really considered this cancerversary date thing. I suggest picking what works for you as it doesn't sound like your MO or surgeon have given you clear direction. I had lymphatic invasion too, but I am going with my 1st surgery date. Whichever date you choose is personal to you anyway...I say who cares what other people decide about your cancerversary date.
2Tabbies- I laughed at your tissue expander question because I have had some of the same thoughts. With my placement around the corner I have ahead all kinds of crazy scenarios in my head. One of them that makes me laugh the most is whether random paper clips or other light metal objects would stick to the magnet. Could be a cool party trick. I am looking for any and all laughs out is this. I have been a little afraid that when I go to places where they wand you down, will it go off? How embarrassing. I go to several for my work. On another note, I am glad your mom is doing better.
How I stated the bro in law ccomment could have been more clear. I am with you all in that the mammo did not find the cancer. I discovered the lump at home 2 months after a physical exam with my doc. I had two prior mammos to the one after I discovered the lump. neither showed anything because I have dense breast tissue. My ultrasound did show the cancer & led to my biopsy.
I support mammos, ultrasounds, MRIs, but it scares the crap out of me that this is the best we have and it is so flawed.
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Smart - I agree...very scary how flawed things are regarding testing. I do also support all the types of testing, even though mine was missed. I know I've heard they can't depend on MRIs since they can often have false positives, and I don't know what to do about that, but I do wonder how many with dense breast tissue are having their cancer missed because the mammo is not effective and they can't get an MRI. I think there should be more education on this so patients know to pursue an MRI and they should find a way to charge less for MRIs AND make insurance companies pay for the tests without a hassle. I had a lot of hassle with getting the MRI. I actually also got an EOB the other day saying my insurance company denied a claim for the MRI done last June because it took them too long to submit the bill to them. I sure hope this doesn't come back to bite me. I hate thinking everything is done and taken care of and then suddenly an old bill pops up and it's been so long since I looked at any of that stuff that I don't remember what was paid and what wasn't.
2Tabbies - wow - how amazing that your mom is almost 97!! I'm 48 and often feel old, I can't imagine how challenging it must be to be 97. I'll bet you have heard some great stories over the years about the "old days". Think about how much has changed in her lifetime...my kids think it's so weird that the first time I used a computer I was in 11th grade. Now they get them in 4th grade in our school district! Macbook Air's for all the kids. It's crazy!
Katarina - I remember hearing a story a few years ago about a lady who had to take out her breast prosthesis. I was just thinking about that recently since I wear them, but I figure I should be 'ok' since mine are the silicon ones. I wonder if hers were the weighted soft forms - maybe the weight would have set it off. Luckily, I really haven't had much occasion to fly, so I haven't thought about it, but am thinking of flying to see my folks so that is what brought it up for me.
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Thanks, everybody for the information on TEs and airport security.
Smart, getting wanded is my concern too. I seem to get "randomly" selected a lot at the airport. Btw, it's party trick time! Paperclips do stick. Not very well, but they stick. I had to try it. ;-)
Mel, my mother doesn't really talk about the "old days" much. If I ask her specific questions, she will. Yes, she's seen a lot of changes. My father was born in 1911. He's no longer with us, but he literally lived from horse and buggy and outhouse days to the days of space travel. I'm 10 years older than you, and your kids would be really amazed to know that I didn't even use a computer in college except for the one programming class I took. Part of that used punch cards. I remember seeing the first ads for home computers, and thinking, "Why would anyone need a computer at home?" Hah! Famous last words.
I totally agree that it sucks that bc detection is so flawed. I'm one of the dense tissue crowd. Or was until the surgeon removed all that dense tissue along with a 5 x 8 cm tumor. I also had some positive lymph nodes. I'm just crossing my fingers, saying a lot of prayers and hoping for the best since there doesn't seem to be a damn thing I can do to improve my situation. Living a healthy lifestyle obviously didn't work.
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2Tabbies. I flew last summer with my TEs in. I asked my PS about it beforehand, and he said he had never had a patient have an issue with airport security. He did however give me a letter explaining the situation just in case. It turned out I didn't need the letter, but it made me feel better to have it.
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2Tabbies, I am looking forward to the paperclip experiment. I am guessing by late next week I will feel up to giving that a try
. I am excited for my TEs, even though I know it will be largely painful & unpleasant. I am tired of being so flat & feeling like I don't look like myself. I feel like my flat chest, hair, pale skin, weight gain....I look 20 years older than I am. I am not exactly excited about being 43, but could accept it more if I did not look like my grandma.I tried to explain to my husband yesterday my angst about the wave of pink & pink ribbons being slapped on shit that does nothing to push the peg forward to better testing, access to screening or helping women coping with this disease. I told him how angry it makes me when celebrity breast cancer folks who act like bc is a breeze pissed me off because they set the rest of us back who are dealing with chemo & rads and insurance coverage and hair loss and body image, etc. He told me I sounded bitter & should not tell people about how I think about this. He said other people think they are helping, and that is the first hurdle. I see his point about sounding bitter I guess...but I already know I am angry and bitter. It was a frustrating conversation...I guess I will just keep these thoughts to myself. I hate that though, because it makes me feel so isolated...and adds to my bitterness.
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You are not alone, you can share your feelings here any time, and WE GET IT totally.
I too have found that husbands are not really the best choice to discuss these feelings with.
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janet, I haven't needed my letter from the PS sofar, but am glad I have it.
Smart, you might not find the TEs too bad. I'll be happy to get rid of them, but they're just an annoyance not painful. My arms bump into them especially when I try to sleep on my side. They're hard so it feels odd. I understand about not looking like yourself and looking older. That's exactly how I felt. I was flat chested, had gained weight, and my hair grew back gray and curly. I felt like I'd aged 10 years in 1. I still feel like that to some extent, but the TEs helped a lot. I nearly cried with relief when I had my first fill and was no longer flat. I hope they help you feel better too.
I also totally agree with you on the pink crap. I disagree with your husband. I think we should respectfully tell people how we feel and why. No need to be rude or go into a full fledged rant, but nothing will change if we keep quiet. They should stop and think whether it would be better to donate to a reputable charity rather than spend money on pink schlock. They should also know this isn't an easy ride no matter how the celebs portray it. As Jennie said, this is a safe place to vent though. We definitely get it. I have days when I'm bitter as well.
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bosum, glad to hear the sternum pain was nothing scary and that you like your new MO. I hope the med changes do the trick.
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Bosum - so happy you like your new MO and that she gave you some answers about the sternum pain! Good luck with the new meds - hope they will help things. I agree that bc seems to be hitting much earlier these days - even though I am 48, I get so frustrated every time I read a post by one of the younger ladies who has been diagnosed but was initially told they were too young for it. We're told we should do our monthly self breast exam and report anything suspicious, but then some doctors seem to blow it off and make little of anything that's asked about.
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I thought that cancer felt hard too. Mine didn't.
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I also thought it would feel hard and solid and much more defined. I, too, had a thickened area that was more firm than hard and it was a wide area. I remember even asking what breast cancer would feel like a few years ago when I was having my mammo done. They had me feel something that had been created so people could feel what bc would supposedly feel like. It was like a hard grain of rice. Mine felt nothing like that, so I figured I must be worrying for no reason and since the radiologists were telling me I had nothing going on, just dense breasts, it just made me feel like I was a hypochondriac. I would compare it to my other fibrocystic breast and think, well, I *guess* it kind of feels like that one so it must not be anything and I guess they are right. I wonder if I had gone to a breast surgeon in late 2012 of they would have investigated it further and done the MRI then or if I would have been in the same boat as you, Bosum and would have been blown off by them, too.
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I know how you feel...I have been waiting and waiting to feel like the old me...or like one of the breast cancer survivors on television commercials doing a 25 mile marathon. I had depression before having uterine cancer and full hysterectomy and then breast cancer, surgery,chemo and good old tomaxafin. In the haze I realized the side effects of everything is depression...the haze was a severe suicide attempt and on a psych ward for 32 days and a 42% chance of trying again. You are talking and asking about why you are feeling the way you do and that's great...you are also still recovering...you may be feeling worse...it means the treatments are working....no one can go back to who they were...we need to accept what we have become.
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Welcome Lynne,
You have been through a lot.
Hello to all, I try to keep up reading here, do not post as much. Busy with life, ( healing from shoulder surgery ), and working on my house, as we listed it to downsize.
Hope all has had a relaxing Easter
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I had a gyne, years ago, who had a model breast with a hard marble in it. It was to help us recognize a cancer.
It worked the opposite way. When I felt my lump, it was a bit spongy, so I procrastinated going to the dr. I thought it couldn't be a cancer because it didn't feel like the model in the drs. office.
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Timbuktu - I have a feeling that a lot of those models could have definitely caused a false sense of security. I had a few mammograms after the one where they had me feel the sample bc and I never noticed that model in the office on the subsequent visits. Kind of makes me wonder...maybe they figured it could do more harm than good (or they just had it in a drawer)!
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Thank you Holeinone and BosumBlues for acknowledging me. I have been so lonely for so long that after reading your posts I had to have a good cry. When asked "how are you doing?" I would paint a fake smile on my face and say "fine" that was my canned answer because as far as everyone knows the worst is over. There are others who know all too well we are fighting each and every day.
BosumBlues could you and I have a chat about people we loved dropping like flies with our diagnosis.
I had been a single mother since my son was 9 months old, his father last saw him when he was 18 months old. I worked, mothered, provided and tried to love my son as two parents would. 2004, I met a rancher who swept us both off our feet. Two years into the relationship we were set to marry, I gave up my city life and turned country, including cattle ranching in Alaska. He was land rich, cash poor, so on my own initiative I did a financial forecast of the cattle operation in Alberta. Things looked bleak. His adult son saw the figures and agreed with his father that some action needed to be taken. His adult daughter wanted to live at a new ranch her father was interested in buying (his dream ranch). When he told her "no" which was something she rarely heard from him, she went on the attack. Not at him, but me. The ranch was put up for sale after learning the land was worth twice as much. It was a lot of money. She reeked havoc with me, gossiping, telling lies, bad mouthing me...you name it she did it. Months and months of this was taking it's toll. She demanded her father chose between her or me. To my shock he chose me. At least his words were, but his actions and decision made little difference to his daughter. In the mean time his son was targeted and stabbed 17 times, he almost died three times in a few hours. He didn't want his sister or mother called, because in the last few weeks they disowned him until he complied with their expectations of his behaviours. Pat called his daughter and his son's mother against his son's expressed wishes. When I came back to the hospital the following, she saw me coming through the door and said in a room full of people and her brother "what is she doing here?" I will never forget the tone. Nothing got better after this, my son and I moved to another house on the ranch (that I was fixing up and painting to rent) for a few weeks while he "worked things out" with his children who were in their 20's at the time. I can't say what happened but there was nothing worked out. A month later I was offered a really good job. He didn't want me to take it and proposed marriage again on November 9. I asked him what his children thought about us getting married and he said "they didn't know". I didn't take the job, but worked for them on contract. We continued our relationship until the day before February 14th. I was working out of town and would be back the following day. He called to wish me a happy Valentine's day and tell me he loved me. I returned the evening on Valentine's day and he was not home and his cell phone was off, so I went to bed. The following morning after dropping my son off for the school bus, I dropped over to his house. He was acting strange, I don't know where the thought or question came from but I asked him "were you on a date last night?" He said he was looking all sheepish. I have never wanted to slap someone across the face like I wanted to to him". I instead took flight, leaving heart broken on the verge of vomitting.
Let me know if you want to hear more of this and my health challenges.
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My tumor Los felt like a thickening not like the lump on those models. I had some "training" on one of them àlso. I'don't always had thick areas so I didn't worry until it felt obviously different from the other side.
Lynne, welcome. I hope you can find some kindred souls here.
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I had felt one of the breast models before too,.and I guess it reminded me of how the shotgun BB's feel in a pheasant or goose breast...nothing like what my lump felt like. My lump was firms, but not smooth, and larger I kind of pictured it in my mind like a it prices of cooked rice sort of glommed together? When they tried to put the wire through it before my lumpectomy, they really had to pound it through. It was a bit disturbing. Like they were doing actual nail & hammer construction.
bosom, I am glad you like the MO & glad you got an answer to your sternum question.
Lynne, glad you are here, sorry about the unnecessary extra heartache you are experiencing. That stinks.
I am 4 days out for the ovaries & tube removal and the start of reconstruction. It was a rough couple days, but I am starting to feel better. My meds made me throw up several times the first night....ouch. it sucked.
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Bosum, are you taking any of the hormone therapy drugs? Let me tell you, it can make you have a trigger temper! I always heard that you count survivorship from date of diagnosis, but your cancer free date is the date of your surgery.... And my onc told me that the most dangerous year is the first one, and that the odds get better with each passing one.....0 -
Smart - glad you are starting to feel better after your surgeries! I hope you have a very smooth recovery and there is no more throwing up!!
Bosum - glad to hear the med change is helping!
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Smart, I'm glad you've got that huge surgery behind you and are starting to feel better. What kind of recon are you having? Just expanders and implant?
Bosum, sounds like we both have had what I call TIBS - Tamoxifen Induced Bipolar Syndrome. I have it more or less under control with other meds. I'm not looking forward to a whole new set of SE's when I get switched to an AI.
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Had my last chemo a week ago. Got to ring the bell! Now I feel like the morning after the New Years party. Sitting looking at the streamers on the floor, the dirty paper cups, the clean up... Trying to figure out what the next year will be like.
We have been so focused on getting to this point and now that we are here it's so strange. I'm am still feeling yucky from the chemo, but the emotional schlump has hit. DH got angry at me for the first time since the Dx 6 months ago. Stupid stuff about papers in the kitchen. I told him now that he doesn't have any REAL crisis he doesn't know what to do with his anxiety.
Just stayed in bed this morning looking at the ceiling. Yesterday I had and excuse as I was nauseous. Today I was just numb and disconnected. people called to say Yay you made it and I let them go to voice mail. Don't feel like cheerleaders now that we are that point. Go see a counselor next week Think its post treatment PTSD. On top of that it's time to start back up with the anastrozole. Hope that doesn't complicate the mix. Fortunately had no SEs when I used it ore chemo. It's going to be a whole new reality from here on in. Thanks for letting me rant!
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Hi, Chloesmom - sorry to hear you are in the slumps at the moment! I attended a lecture recently and they were talking about how a lot of cancer survivors go through a PTSD from it. I think it's great that you are recognizing it and are going to see a counselor next week - I hope that is really helpful for you! I'm sure you hit the nail on the head with your assessment of your DH's reaction to the papers in the kitchen. I know I felt really weird after my surgery was done and the appointments were slowing down. I was very fortunate that I did not have to do chemo, and I also did not do reconstruction, so my time from diagnosis until recovery from surgery was shorter than the ladies who have to do additional treatments, but I still felt really strange when it was done. Like, what am I supposed to do now?? So, I can imagine that is even more magnified when you have had a longer time and more treatments. Let's make plans for your new reality to be filled with love, laughter and time spent making good memories!!! Hang in there!!
Lisa
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Bosum, yes, that evil, evil estrogen must go! Sigh. I'm not going to get my hopes up that the AI's will be easier to tolerate than Tamoxifen. Actually, from what I've read, I tolerate Tamoxifen better than a lot of women. Which is really sad cuz it's sure screwed me up. I just hope it is working on the cancer cells too.
Chloesmom, I had exactly the same reaction to finishing chemo and then again at finishing radiation. My active treatment was done, but I could not comprehend why people were congratulating me. Had I won a prize? As Mel said, there's a feeling of "Now what?" I hope your counselor helps. I saw one for a while and almost feel like I should go back. Or maybe find one who specializes in cancer patients. Hang in there! You aren't alone.
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Well, all I can say is that with my anastrazole, I don't have any aches and pains worth complaining of. Now it did make my cholesterol shoot up, and I went off for a month and 15 days and I did feel pretty good then. Then he had me take Femara and that lasted 5 days and I said NO MORE OF THIS. NEVER HURT SO BAD. Took 2 weeks to clear that out of me ad now I am back on the anastrazole and we are monitoring the cholesterol every 3 months. (Ratio was till good but overall number was more than 200).
The good news with Femara and Arimidex is that when you stop taking them, your SE's go away... With Exemestane (Aromosin) the estrogen is totally killed off and your SE may be on going. At least that's what I was told by someone who took aromosin for 5 years.
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