Why was I stronger DURING treatment than I am now?
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When I first got the cancer my son, who is a dr, looked up the stats. He said I had a 99% cure rate. He said "who do you know who has ever died of breast cancer?" He thought it was a nothing disease. I started to list the people I knew who had died from it. I don't know where he found that stat but if it had influenced my behavior one iota it would have been dangerous. I don't get it.
What I remember reading was not that the recurrence rate goes down after 5 years but every year. Which makes sense if you think about it. If they caught the cancer in time. So if they didn't catch it in time the first year the recurrence rate may be 10%. But if you get through that first year it might go down to 5% then 3% then 2%. The more aggressive cancers would recur sooner as would the cancers that were not eliminated by treatment. So, by the time you get to 5 years the rate might be 1%. Hmm, is that where the 99% clicks in? But recurrence is always a possibility. I'm hoping that every year there will be new and better treatments!
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T ,
I think many people don't think of breast cancer as the cause of death because death happens when the BC has effected a vital organ like lungs, brain, etc.
I know a huge number of women that died from BC I always know an equally huge number that are alive and well.
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Smurf - you said the Komen site states they allocate money for mammo's...I thought everyone was entitled to mammo under ObamaCare. Is that correct?
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Jilly that is correct.
All US health insurance must pay for yearly screening mammo which are not even subject deductible.
Even Medicaid (welfare) and Medicare must pay. However, diagnostic mammo are subject to whatever benefits your insurance provides.
My sister just recently had her first screening mammo. Rad wanted an immediate diagnostic mammo, then a sonogram. All was clear . The bill was over $600.
Also, there are people who have opted not to enroll in Affordable Care for whatever reason. I know several that would rather pay the fine and stay uninsured. Those may possibly use Komen money.
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I want Komen money to go to THE CURE!!! Isn't that what they say they are about?
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It's my understanding very little Komen money goes towards research - and I have made my family and friends aware of that.0 -
Raidergirl.
I heard somewhere that there is a recurrence peak at around 10 years too. I wonder why?
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Recurrence peak around 10 years more common with lobular as its slower growing
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I am feeling quite anxious tonight, I think it's because I have been at the hospital twice this week not bc, but pelvic floor issues and my Coeliac consult on Monday.
The week after the next, I got 3 appointments at the hospital, one for a biopsy on this recon breast and the other my 6 month check with the surgeon. The other is to decide what to do with the P floor, as I am told it is shot through childbirth.
Work is a long long list that gets done, and the list grows again...
I am feeling again like there is a sense of doom and that maybe I should ask for a scan to check for mets, but I won't get it as she will say no, not unless I have symptoms.
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I've been having those "doom" feelings too lately. No rhyme or reason. Maybe just medical fatigue.
It seems to be one thing after the other.
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it is very hard to never feel like you are on the home stretch. I try to stay strong, ready for whatever, even bad news. But it is long, complicated and involved treatment that is not 100% understood.
It would not be normal not to feel the doom occasionally. Try to roll with it. Keep talking to us. We are here.
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Me too, but it might be for me because I got a three month almost, vacation from the hormonals.(inviting disaster?) man, my feet are wrecked. My onc's nurse said well you ARE getting older!! But, they never hurt before, and it hasnt gotten better since I stopped femara. My sister is a year younger and except for cancer, is in worse shape than me, heavier and more sedentary. I am liking sedentary, too tho lately.So she is my control, and her feet don't hurt. Whatever. It does make it hard to do things,and constantly reminds me of cancer, even though it is an affect of the treatment. I am going through the house -in my mind, anyway, and sorting out stuff. What can I sell and get a few dollars for, because HE doesn't want it, but somebody might. Thinking of things that I should give my niece, or somethings for a couple of friends. Like, I also have things I have collected over the years, little objects that I kind of make art/alters out of...well until treatment and very rarely since...so realistically, what do I want to spend my time on, and what can I begin to let go of, you know, just in case.. and the crazy world that I sometimes pay attention to on the tv, before retreating back into the wall that is me.
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You too Tomboy! I've taken to being wheeled around in a wheelchair at museums. I tell my friends I can't walk far whenever we try to make plans. I bought a bunch of new shoes for the summer and I'm wearing one each week to see if the pain goes away. So far, though some are better than others, each one hurts my feet in a different way.
It feels as though my bones and ligaments are dissolving. I won't give up, I do need to exercise. But I am a bit comforted to know that I'm not the only one!
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wintersocks, I'very been really depressed lately too. Some of it is circumstantial. My mom died recently. But I know Ta moxie aggravatesmy depression. I see you're on an AI. Maybe they do that also. I hear you on wanting a scan. I had my 6 month check with my MO last week, and he made a comment about how great it was that I will be coming up on years out in August. I wanted to say, "Big f***ing deal" and asask him why still feel like crap. He also said that other than a swollen leg, I "looK healthy." That pissed me off for 2 reasons. First ,the swollen leg he mentioned is lymphedema as a resultof
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wintersocks, I've been really depressed lately too. Some of it is circumstantial. My mom died recently. But I know Tamoxifen aggravates my depression. I see you're on an AI. Maybe they do that also. I hear you on wanting a scan. I had my 6 month check with my MO last week, and he made a comment that I "look healthy." I wanted to ask him if he could see mets with his naked eye now. I hope and pray the biopsy finds nothing worrisome , and you can concentrate on dealing with your other issues.
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That's exactly how I imagine my feet to look on the inside, like the tendons and muscles of my feet cannot hold the bones in place anymore, like my feet are just two bags of bones! When I walk on them, it sounds like rattling dice. clicking into and out of place. So far, I am finding that really hot water feels better for a while when I soak them. And these merrell slip on shoes feel really good, but I wear them constantly, or these excellent slippers that cabela's has, like mocs, but with like an inch of sturdy foam on the bottom, with sheepskin. yum. I need my feet! I did get a fit bit for xmas, and somedays, I actually "move" five miles a day. I am not sure how accurate it is, because scrubbing the tub or chopping veggies, washing dishes whatever, seem to add up. other days i don't bother even to strap it on..
I had seen both my onc and his NP, and he had said to me " What can I DO for you?!?!" After listening to me complaining about some of the things I am left with after treatment, and I really didn't have an answer. Today, more than a week later, I do have an answer: Please don't treat me like a crazy freak woman. I am not the only one who is feeling like this. Just acknowledge that what I am going through is just not me alone.
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HAHA, 2tabbies! Sorry, thanks for the laugh! Your onc seeing mets with his bare eyeballs! Is the lympedema in your leg from having nodes out from ovarian cancer?
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I am sorry to hear of the loss of your mom, I think I read you say that maybe on the middies thread, but that it was the right time for her.
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I have Merrill slip ons too but I have not tried them out yet. something to look forward to!
I'm very worried about lymphedema too, I've had 20 nodes removed from my groin because of uterine cancer.
Hot water is supposed to be bad for that. Airplane flights too, but I really want to travel while I still can!
No more waiting!
I wonder if our feet hurt so much because our circulation has been compromise? Then there's neuropathy...
It never ends, does it?
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I had pelvic floor issues increase exponentially with BMX. Went to womens health specialist PT. Tight fascia pulling from chest pulled bladder out of whack. Thought I'd need surgery but better than ever Hope you don't need suegery
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No more waiting! I know they say heat is bad for lymphedema, but I have been in a hot tub with my arm, and it feels soooo good. And I have a heating pad at night that i move around to different areas, and my arm and trunk are much better now than they were at the beginning. I hardly ever wear a sleeve anymore, just a night time manual drainage, and a comfy sleep sleeve. i have strengthened my arms, but still nowhere what they were. I was really strong. But I do have hills I walk, when I am really really good. so my legs are strong but those feet just don't let up.
I would travel if I was you!
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Can lymphadema improve? I didn't know that. I picked up my grandson a couple of weeks ago and ever since I've noticed some swelling in my bad arm. Not sure that it's lymphadema. I thought once you get it, it's there for life.
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I always thought so too, but mine does seem to have gotten somewhat better. Its certainly not what I would think of as well-controlled, because the more I ignore it, sometimes the better it seems to get. But I never get to see my LE therapist anymore, and she is the only one with the before and after measurements. I think the weather kind of heat affects it more than applied heat for some reason. I remember las summer when it was really hot, I would cool it in running water. weird.
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me too, medical fatigue is a good phrase, i never have a month without a medical appointment........
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Tomboy, thanks for the condolences on my mother. It was definitely her time, but I do miss her. Yes, my leg lymphedema is from losing pelvic lymph nodes to ovarian cancer surgery. It didn't show up until 9 years after the surgery. I think it was triggered by the swelling that happened when I broke my ankle. Heat does make it worse. At least it's always worse in the summer. Swimming helps it. My LE therapist said they used to warn against swimming pools because they thought the warm water aggravated LE. But now they think the pressure of they water works wirh the contraction of your muscles to push the lymph out of the affected part. She did say the water should be below a certain temperature. I think she said 90F. So therapy pools aren't recommended.
Lily, I know what you mean about appointments all the time. I thought I had next week free of them, but no.
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My feet hurt too! The bottoms of them get so sore & I walk like an old lady. A really old lady. While I am not glad it hurts for you folks...I am glad it isn't in my head.
My hubby and I have been arguing a lot, so that has made me depressed. He can be pretty hard on me. I sent him fishing with his dad this weekend so we both can get a break. I have a date with my couch & am hoping I can stop eating my feelings. My weight is not headed in a good direction.
I swear, if you listed any body part...head to toe there is a change in that body part due to treatments. Crazy. My newest angst is my left hip/outer thigh. Something must have happened during my ovary removal causing numbness & pain if I touch that area. It has been 5 weeks, so I hope it goes away.
I am starting Effexxor for the hot flashes that have come on like crazy. Worse than the chemo hot flashes for sure. I developed a skin tag on my eye in the last four months, so I got it frozen today.
I did my first fill yesterday...the radiated side is sore today, but I will live with it. Next week another fill & follow up with my MO. I should get my echo scheduled too...Next month is cardiologist and breast surgeon month. Never ends. Never. Ends.
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Add my name to the list of those with aching feet. I can't blame it all on chemo. The bunion is probably inherited. It wouldn't surprise me if chemo increased its inflammation and caused my other foot pain though.
Smart, I hope the Effexor helps your hot flashes. I think its helping mine. That and Gabapentin. You're right that it never seems to end. Did you get just TES for reconstruction? My PS wouldn't do that because of their failure rate after radiation I had to have a latissimus Doris flap. I have TES right now. Exchange is scheduled for June 25th. I'll be glad to get these rocks off my chest. I'm happy with the results so far, but hate the way the patch if skin from my back looks on my foob. It's a very obvious patch. I don't know why something that no one else will see bothers me so much except I just want to be normal and not see cancer when I look in the mirror.
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I'm feeling the doom tonight, too. Everything hurts, badly. Feet feel like nubs. back throbs and knees won't bend. I have to pull myself up off of the couch. Even my right arm seems frozen up (new location). It has never bothered me! Must be from using it more while pulling myself up from the couch! The one thing that always helped my aches and pains was a hot bath, but can no longer soak in a hot bath. I get a lot of swelling. Really hoping for a better tomorrow. I mentioned to dh tonight that when something happens to me, I want no mention of cancer in my obituary .. especially any memorial contributions to anything related to cancer.
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So sorry Kitty. You could be describing how I feel. I feel sorry for my husband, I'm constantly telling him about all of the pains. I'm sick of hearing it myself. But when I come on here I feel "normal", I know it's real. I know I'm not just a complainer. We're all in the same boat.
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I thought I would be done and feeling better 3 years on..............I am finding it very hard to forgive myself for having radiotherapy as that has left me in so much discomfort......and constant awareness of what has happened as the tissue is so damn tight all around my chest to back of shoulder
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