MIDDLE-AGED WOMEN 40-60ish
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joooooooooooooooo -
Hollering for Paula66 too...
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Learned something new at the breast surgeon's office today - if any of you ever have weird, tingling feelings on your nipples (either breast), it's just cut nerves - the tingle can originate in the chest wall and go all the way to the nipples, just following the milk ducts. Also, I had some lumps near my original tumor site that I was a little concerned about - he checked them out and said they will always be there, get to know them and if I ever feel anything different to come see him. And the way to check for lumps - now that we've had one - is slightly different from what I've always done. Put your fingertips on your skin, and just push the skin all over the breast area when you're laying down - not those little circles, just roll the skin over the tissue of your breast. Does that make sense?
And I was wondering why I didn't need a mammogram after 6 months, just waiting until a year from my last one. He said, first if he felt something that concerned him I would get a mammogram. Second, if I had node involvement or signs of vascular invasion he would schedule one every 6 months. Otherwise, it's an annual thing, but I do go see him in another 6 months. That puts my mind at ease to know that a doctor is doing a manual check every 6 months instead of me just relying on my amateur attempts. Is this what everyone else's breast surgeons do? It was just a regular 6-month follow-up, but I sure learned a lot.
Oh, the way I procrastinated about getting the answers to my questions regarding the boobies - I hate it when I do that! I worry about nothing, and that reminds me of this saying I saw: Half the unhappiness in life comes from people being afraid to go straight at things.
I made sure my son saw it because we are both such procrastinators!
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Not going to try and catch up with everyone - you ladies are way too busy.
Got back from the surgeon and here is what I found out. The CT & Bone scans were clear - no signs of new tumors - nothing cancer related. The burning sensation is caused by lung changes from radiation. LUNG DAMAGE that the RO said I would not get and would not even discuss with me before treatment started. I had these concerns and was scared to do radiation because of it. At the time, things were moving so fast and I wanted to be done with all treatments, I went ahead and did the rads.
Surgeon is sending me to a pulmonolgist on Feb 15th to assess the extent of the damage and then I see the surgeon again on Mar 4th for follow up. He may send me to a pain specialist after that - not sure but he did mention it.
I am going to call the RO center next week and let them know what happened - thank you very much for the lung damage you said I would not get.
Needless to say I am really pissed right now. Have had one problem after the other since surgery in Aug. Can't catch a break.
Not going to stress about this. Wouldn't do any good. Just going to keep the appts and see what happens next. Life goes on and I so do I.
Thanks to everyone for your caring and concern. I would not have made it this far through this journey without you ladies.
Jo
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Heartnsoul--glad you got your questions answered. I don't see my bs at all since my f/u appt. My onc(MO) is in charge of everything.
Jo--Good to hear from you! Glad there was no mets. Do you know what kind of lung damage? and where in the lung? Keep us posted as you find things out! My Ro told me that there might be a small amount of scarring in the lung, but not enough to ever notice. And we discussed the risk of getting lung cancer from the rads. He said if the rads were to cause cancer, it would be at the top of the lung where the clavical node was zapped. I had a mx though, so where they aimed the rads is probably a lot different than yours. I hate it when docs don't tell me everything! I'd be mad too! Definitely call them and let them know!
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Well, crap, Jo! I can't BELIEVE after everything you went through with rads, that they managed to screw up again! It's tempting to go into the rad center in person and air your complaints with them loudly, but that would probably backfire somehow - at least that's how my luck works. Radiation is scary business, this whole mess is scary. You have a great attitude - pissed off and calm. I'm SO sorry you're having to deal with this now!
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Jo, sorry about the lung damage...I was warned and had to sign a waiver before radiation but I thought ...breast cancer is for sure...lung damage is a possibility not a definite so I went ahead...wonder was it the angle of the machine? the number of rads you had? Definitely report it and let yourself be angry and let it out...no more festering inside!
So glad the scans and CT were clear. A blessing for sure!!! and good they hav eyou scheduled to see folks who specialize in lungs....chin up Jo....one fear down...now you have some answers, which in the end, is better than fear alone.....knowledge is power my dear. Be gentle with yourself (but give those folks at the hospital hell!)
Sandee
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Thanks ladies - At least now I know what I am dealing with. Just gonna take it one step at a time. Have too many other things to do and not gonna worry about this. Have to get it out with the RO though. It is enough we have to be here to begin with but then to have to deal with incompetent liars that is where I draw the line.
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jo, I am sorry to hear that news. Why don't you Google "pulmonary fibrosis" which is the fancy term for the scarring on the lungs from rads. It is one of those low, but very real, percentage risks from rads. It will be good to try and find out from the pulmonologist how much of your lung is affected, and if there is a way to minimize the effect.
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elimar - Thanks! I will do that later. I was off the internet all day - no power and lots to catch up on. That could be ammunition I could use against the RO. Seems I end up with the low percentage risk SE's. Just my luck.
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Hey Middles, I haven't been on a couple days, due to my Uncle Joe vistiation yesterday & Funeral today in Kentucky, My Aunt from Waco, Tx got delay in Dallas ,Airport all day, because of Ice storm. She didn't get in til 1130 last night, I thought of all of you guys from Texas. Hope your safe & warm! Thinking of all of you Middles!
{{{{{{{{{{{JO}}}}}}}}}}}, You are such a Positive Person. Please, remember we are all here for you!!! keep us posted! We are all praying for good news. Are you going to see a Lung specialist? Love ya!! xoxxo
Have a Great weekend evrybody!!! {{{{hugs}}}} Gina
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Gina - I am scheduled to see the Lung Specialist on Feb 15th and then the surgeon on Mar 4th. Will let everyone know what I find out.
In the mean time - I have more important things to do - like living my life - I do remember having one of those before BC. Going to pick up where I left off.
Thanks to all the Middies - you are a wonderful bunch.
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Aw Jo - glad it wasn't what you feared and p%ssed off that it was what it turned out to be...that is what has kept me from taking the AI prescribed...I will see next week if my regimen of DIM and other stuff has kept my estrogen at bay. My onc did a 180 on supporting my taking it and balked at an estrogen level test! I will stay with her for the testing- as they all seem to poopoo side effects and basically offer the same thing to everybody according to diagnosis. The last visit was rough as she listed all of the drugs I would be prescribed to combat side effects. I suggested it might be wise to see what my d&my baseline was and she said "Does not matter how low you have gotten it with your little vitamins you have to take an AI" To which I said is there anything the AI does OTHER than suppress estrogen? No, she said. To which I said if I can lower it with less impact to my life in general how can that ever be a bad thing? No answer. At this point I had been on my regimen for about 3 weeks. Then I said how canyou know if it is working if you do not take my estrogen level...regardless of "my little vitamins" or an AI...drum roll....THE SIDE EFFECTS WILL TELL ME IF IT IS WORKING>! I have heard other women say this is what their doc told them but you could have knocked me over with a feather. This is an educated woman telling me this horsesh*T?! It hit me that it was no error that of all the blood work done my estrogen level was the only one that did not come back...she did not want me to know what the level was so I would capitulate to the AI....I mean really, how crazy is that? I pretended to agree and took the prescription and yet another free sample of an AI (I now have two and counting). When I was in the car I called back and said, humor me, I am a numbers person and since I am going to take this drug I need to know my numbers so I can watch as it heals me...the nurse came back on laughing and said we knew you would insist...ok..we will order it. Remember,your part of the deal is to take the drug. Indeedy....not. I go back in three months and will get tested again. If the number supports my regimen I will stick with it. If not, of course I will reconsider, as I am no fool. If it is working I will moan and groan and load up on all the drugs to combat the side effects I will mimic for her. This is ridiculous but I do not want to pay out of pocket for the tests that insurance will only cover if the onc orders it. ARGH I promise you all that when I hit the BIO conference in DC this summer I will be picking all of the top researchers' brains. And I will start with the feds. They will think it will be to write an article about the new research centers (which I will) and in turn will let me talk to the scientists...those folks love to talk about cause and effect-the real stats. After all, that is the same conference where one of the leaders from the Pfizer team that developed Chantix to stop smoking told me no way when I said I wanted him to hook me up! Said just too dangerous at this point-that they were having some real problems with it...and he was right. Two weeks later they put a black box warning on it. Now the leading research is pairing it with an antidepressant to offset the violent mind games it spurs...I go for a second interview for a clinical trial at MD Andersen next Tuesday. I hope I get accepted. It is a stage III clinical trial and the first two rounds had staggering success at Mayo and Johns Hopkins...part of the success is obviously because they are tossing in EXTREME counseling and physical monitoring for 13 months = although the course of drugs is only 12 weeks. (((another interesting thing as in the beginning antidepressants were never given for longer than 90 days max- now they have people on them for years-that is not what they were designed to do. They were developed to get people to a place where they could deal with whatever was bothering them-they were never to be a cure but a bridge- if you dig down in the small print you will see that is true today...all test results for them are only based on 90 day max trials))) anyway-Even the damn placebo works with that kind of support. They do not want it to fail for if they can offset the bad brain effect they will have a billion dollar blockbuster...which of course will not work as well on open market because nobody could possibly afford the support that is offered through the clinical trial.But they will have the stats to back it up. It is a tangled web but for the first time in my life I am willing tohave my blood and body checked out from head to toe once a month and then have top shrinks from Baylor (they are handling the emotional part of study) check my psyche! I will keep you posted as I won't find out if I pass into the trial until this next interview. They have very narrow parameters on who they are allowing in. Of course, since that helps boost the success rate. My onc should be proud of me since she is the one who kicked me into gear to stop smoking when she said at the very first visit- breast cancer will not be what kills you...you have a very low stage, grade, etc---but your smoking will. Why that hit me after all these years I do not know but it did and for that I am grateful. Oh yeah, I have another prescription from her for Chantix. hahahaha. Quite a little collection I have going right now. I am not opposed to medication as it saves many lives. It just has to be based on fact. Phew- had to get that off my chest it has really been ticking me off. I don't like having to think so hard:)
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annettek - Bottom line - Doctors don't like it when we know things about our treatments and the meds they want to give us. Why they don't want to do a simple test at our request is beyond me. That and the fact that we know our bodies better than anyone and they should listen ever once in a while to what we have to say. Incredible what they could learn from us. They forget we do have a say in what is done to us and what we put in our bodies. We are not stupid robots and do things they want upon command.
Hate all this crap. Didn't ask for it but have to deal with it.
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Lynn,
Hang in there. Did they tell you when to expect results? We are all with you and hope all is well...we have all been throughout the waiting and I think it is one of the toughest parts...the wait to 50 posts is tough, just use them up each day and you will get there soon!
Day 2 down still ok minor side effects, now for the dreaded day 3-4.
Nite all. Thanks for the hugs and tips. -
Wow missed so many posts got to remember to refresh that page!
Elimar will work on avatar tried before but did not work, may be iPad thing...
Anyone heard from Paula?
Jo happy no mets so sorry for the lung damage, lung and heart damage for the rads is high on my fear list as well.
Hugs to all,
Jean -
Just joined this forum. Cancer free for almost 6 years. Triple positive, and one of the first to be on herceptin. Hated chemo - threw me into abrupt menopause at 48. Was on tamox for 5 years. Opted for bilat mastectomy - then waited another year to have tram flap. Looked all over the internet for a thread on early aging after chemo and found none.
Love my onc, but he sluffed off my concerns re early aging and feeling like I lost IQ points. He feels I would be aging anyway. But, like many of you, I looked 10-15 years younger than my age - now look my age (57). I eat pretty well, exercise alot. But even after 6 years, I have less energy, am less "on the ball", and look (and feel) haggard.
BTW, hair grew back wild and curly, then relaxed into gorgeous straight thickness (I never had hair so great), then returned to thin (even thinner than ever) hair, which I now "enhance" w/minoxodil (works pretty well, too).
I know I should be grateful to be alive, and I am, but damn this disease. And damn the "cure".
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Farm, first of all, welcome .. I don't think I met you before. Should we have a welcoming party for all the newbies? I haven't been here for only a few days and it seems I saw many new names in the list. There were lots of comments to me, and to those I'd say please please PM me so I can answer privately because when I only come in one or two nights a week it's really hard to go back and read everything but I want to answer anything addressed to me and the PM method would work best.
The main reason I come here week after week is to feel a little connected with all my sisters, maybe help someone new, and to let all know that life can be very very good after cancer. I wish I could come every day and stay current but my work schedule jsut doesn't allow for that. But to anyone new coming in, know that you are in good place where we're try to help or try to make you laugh. Eli, not trying to take over the moderator's role, I just want to reiterate that for all new people coming in. And for those, we have some really cool parties now and then with ... well .. I don't want to spoil it, but ... sometimes ....
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oh my....is that not insiration to go back to the gym?!
I still say you folks should come to Halifax for your treatment..with the exception of the surgen I put on the fire, of course. My radiatiologit is into meditatoin andmindfulness and would not talk about my cancer until he had ascertained how I was , gave me the opportunity to talk and cry and then he read me all th einformation, drew me pictures and told m what it all meant. i had done my research as well an dhe was happy ot have someone in his office who cares about ther health.(google the name Dr. Rob Rutledge...and the Healing Circle")...he looks at the whole person. My oncologist was the same...read me al lthe notes again, explained them from his perspective and was delighted I had done the research and knew what protocol he was likely to do. he even suggested I go for a blood test toe ensure I was menopausal, even though we had decided to do tamoxifen. Turns out everything is indeed menopausal...EXCEpt my estrogen level...coincidence? I don think so actually!
come to canada all those who have had crappy dr.s be mean to them...I could adopts you as my family!
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Sandee, I already live in Canada, but I'd come to Halifx because it's so beautiful!!! You live on the edge of the world....
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{{{JO}}}} so sorry about the radiation damage. I still have a raspy voice (started day 3 of tx) and the RO says, no way rads did that. Right. Been putting off going to the ENT because I am sick of doctors right about now. Hold his feet to the fire and blast away!
HnS - I am a GREAT procrastinator. But the cruise put a dent in the savings so I am doing our taxes this weekend. Ugh, hate it.
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Sandee, the holistic leanings of your docs sounds good. We are whole people, not just a walking breast with cancer. Too bad so many of them pooh-pooh things even of a mild alternative nature. (We've all seen or read about docs who don't even care to check our Vit. D levels.) I think more doctors need to do "active listening" too. I know I like feeling like an individual and not just a number.
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Welcome Farm - As you can see, there is a great group of ladies here. Hang out with us - it gets interesting at times.
Marlegal - What a nice picture to look at first thing in the morning. That's all I'll say about that.
BarbaraA - Amazing how rads can't do any harm to our bodies. Not supposed to even burn or get itchy rashes. Humm! Had both of those. Now this. I am so sick of doctors too. At least I have a little over a week off before the lung specialist and then 2 weeks before the surgeon. I was hoping for a least one month with no appts. Right! Not going to happen now. Knew I had my 4th followup with MO before my cruise. Was going to take orders for rum cakes from the Cayman Islands LOL.
This too shall pass and like goes on. Well, I am going with it.
GOOD MORNING MIDDIES!
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Jo--I always like your cute pics! And Marlegal--yes, that was nice to wake up to!
Welcome Farm! I'm going to send you a pm about the tram flap!
I'm so thankful my oncs take their time and explain everything to me. My MO is known to be running late, but no one minds because we know it is because he is taking extra time with someone who needs it. We've all been there with him!
Happy Saturday!
Tina
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Tina - That picture is what I am usually like. Carefree and fun. That is my goal - to get back to that.
Promised myself I would stay positive about this recent issue - not gonna let it get in my way.
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Hi ladies! Sorry I dint get online last nught but it was a bit of a bmmpy evening and by the time I got relief I just wanted to sleep. Bottom line is WHY OH WHY am I so dang stuborn? I laid there like I did until I called the tele nurse. Once I got a new antinausea pill it was like night and day. So glad I did wait too long. We live in a small town and the drugstore closes by 10pm. Today is going better. So I know what to look for. Thanks girls.
Jo I'm glad that it shows no new cancer.
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Paula - Glad to hear you got some relief . I know all about the nausea and it can be awful.
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E-loving Betty this AM-she's so cute!
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I think we are all stubborn in our own way. We try to do it on our own. I thank God for you all that we have answers by you already going through this. Trust me it still hard but at least we know what to expect. 2 days down and we are suppose to have snow on my DR appt day. I am praying I will be able to get there. Hand in there.
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