Can we have a forum for "older" people with bc?
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HI Karen (There is hope),
See my stats below. My 3 cancer drs and my GP all agreed no chemo for me. My oncotype was in the intermediate group so not a help in deciding. I am highly ER+ so maybe that entered in to their decision. I was 62 at time of diagnosis. I was (am) nervous to skip chemo and glad to miss the experience. My lab work and tumor markers are all great and I am tolerating Arimidex with only moderate kicking and screaming :-)
Different patients, different situations, different doctors... you just have to put your faith in people you trust and go for it.
Good luck.
pam
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DEAR PODS, I AM SO SORRY I DELETED BUT I DID NOT WANT TO MISLEAD ANYONE. I had to truly sit down and go thru notes and tapes today and recap correct info on the Board this eve. Just to update, treatment team met with me yesterday to 'splain why I got so sick on 1st chemo. In listening to the tape, they gave me information pertinent to the "errors they made" in dosage while trying to "cover their ass." While they did make a huge mistake in my chemo dose, my body also apparently had a reaction to the meds-yada, yada!. The ONC DOCS did a full assessment of my SE's down to my black toenails and blistered skin. They concluded that the drastic SE's I am exhibiting go with a chemo dosage akin to four times the dose I was given. Again, this is bittersweet because I know that they knew that something was terribly wrong early on. F*ck-I feel like we are all just guinea pigs. Sorry, I shouldn't write that because my experience seems to be the sh*tty one and I am trying not to be so angry. It just so s#cks that I feel so powerless!!!!!! If I stay with them, they want to meet again March 11 and decide-if I do want added 3 chemo treatments (greatly modified). No matter how I write this or try to explain it, it all sounds so bloody wrong!! I keep trying to put a good spin on this and I can't! It is so scary and I naively expected the people treating me to know what they were doing. AND I AM SO BLOODY ANGRY TO HAVE CANCER that I am looking for any excuse to "go off" one someone!! Cancer is hard enough and I feel like I am in a hole I cannot get out of. I just need to stop and slow everything down-I am so overwhelmed and barely rubbing two brain cells together. I AM SO SORRY TO VENT ON EVERYONE. I do not know what I would have done thru all of this without you ladies. Please know that you all are so very special!!!!! I feel like crap and I am going in the garden to eat frozen worms-crunch crunch. Hugs for now SV
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Oh Karen, please do not worry about "chemo" as this treatment is very unique to my case ONLY. I and my cousins have never been able to wien off of Prempro. The side effects we have from menopause make life truly unbearable and tho we have all tried due to cancer risk of HRT, we simply cannot and live a useful life. The chemo is being offered me because I will not be able to take the "tamoxifin (is that right name?"), the five year pill to block ER/PR receptors that everyone else takes after radiation treatment. I was to be on the radiation treatment with the Tamox, but when they tried to wien me off Prempro, they had to put me in the hospital. I get so very ill. We are going to try to wien again in four months but both ONC and GYN do not believe I will ever be able to be off of HRT. So this is unique to me. The chemo is to give me a bit of a leg up in case a cancer cell escaped and is floating around ready to start up in the bones or lungs. ((((Hugs))) SV
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Vent away SV! That's exactly the purpose of this place. I'd be furious too if the same thing happened. It's not only the physical effects but the breach of trust that has to be annoying. Bad enough, as you say, that we all got cancer, but worse that the treatment hasn't gone the way it should.
One of my saving graces has been the great trust that my oncology team has earned. I can only imagine what this road would have been without that trust. Thank goodness you have some time to heal, to regroup and to decide what you will do next. There's no going back, but you do have control over what you decide to do next - and time to get enough info to make your decisions carefully.
My thoughts are with you. Not so sure about eating crunchy worms though.
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LORDY SV YOU HAVE EVERY POSSIBLE RIGHT TO SMASH GLASS AND RAISE HELL. I've had some crappy experiences but Never in the world have I heard or read any thing as unabashedly WRONG... THEY should PAY. YOUR TREATMENTS of any kind, should you decide to accept them from that institution should be fully covered by that hosp and that lousy excuse for a team. Scondly, obtain the consult of a lawyer. THIS is a heinous act and you have survived to tell the tale, by the grace of God. Would ANY of them have treated their MOTHERS this way? Oh hell no.
Documentation is everything. Log and record. Diary's can be submitted as evidence..As well as your log here.
Can you hear rightous anger in here? You are justified in your confusion and anger. Completely.
Connie
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MelissaSV...I do not believe what is coming out with your mis-dosed chemo...its totally wrong that your onc team should be trying to placate you saying your body had a reaction to the meds. Bl**y H*ll I think anyones body would have a reaction to chemo x 4. Chemo x 1 is bad enough....and in very extreme cases chemo x 1 can kill. No wonder you have been so ill.
I really don't know what I would do...but sure as eggs is eggs I would not be sitting on my behind for long. I would get myself as well as I could, then find a lawyer, and sue them. I'm not sure how your laws work...we don't seem to sue like you do, but apparently we are fast catching up.
We have recently ( well 2-3 years ago) had posters going up in ERs asking if we had had an accident, which was caused by someone else, and wanted to go for compensation....something unheard of a few years ago. I would most certainly NOT let them gloss it all over, it needs bringing into the open so others will steer clear of this team, and hospital.
You have every expectation of the team who were treating you to treat you properly, with great care, and NOT to endanger your life. As you say you are angry at having a cancer diagnosis, without them trying to kill you !!!! DON'T take it lying down...I know you must be feeling really really rough, but don't lose sight of the thought that you could have died. Someone should be held to account for this.
Isabella.
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OH YEAH....No worms for me either. I'd throw some eggs at a tree, beat the crap out of the bed with a broom. run screaming.. or better just go outside and scream the primal screams that we have inside us and rise up with injustice.
I'm mad as hell at son-in-law who ruined today with a phone call. sonovabitch. called this morning and upset her again. And this time she called me screaming, I"M ready to call a lawyer!! Which is far preferable to the police.
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OHHH Lordy PODS across the pond and here, now you have me giggling. It's either laugh or cry right now.GO MIGHTY PODS! REALLY, I WANT TO HANG ALL OF THE BASTARDS BY THE SHORT HAIRS! HOW DARE THEY! I wish I had my own NINJA FORCE to unleash on them!!!! ONLY SLOW TORTURE WILL DO LIKE A DOSE OF THEIR VERY OWN BRAND OF CHEMO! AND, I just went into garage to get laundry only to find floor entirely flooded with water from the washer-crap-so I have been "shop vacking" up all of the water!!!! And while I am down there the garage phone is ringing from my Dad upstairs in the house, "Is the water running somewhere?" YEAH ALL OVER THE FLOOR FROM YOUR POS (piece of sh*t) PLUMBING JOB BECAUSE YOU ARE TOO CHEAP TO HIRE A PLUMBER-Like my 40 year old, lazy ass brother and Dad cannot do a thing. "OH ITS LAUNDRY AND WOMANS WORK EVEN IF THE ONLY WOMAN IN THE HOUSE HAS CANCER! I am losing it! SV
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Hi ThereIsHope - I have similar stats as Pam and you, and I also am not on chemo. My oncotype is in the low-risk group, have a high ER+ score. I am on Femara about a month now and doing well. I agree with Pam that each individual situation and medical team are different. Get all your info and ask lots of questions and make the decision that is right for you. You can do it!
Chris
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SV -0
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SV - Ditto with Connie. Keep notes, documentation and I believe I read that you recorded the mtg when they "admitted" their sloppy work. Hang on to that too! Taking the time to cool off is smart too (although you have every right to feel angry). When the anger has simmered down, then consider your options.I am flabbergasted that you have been treated so poorly. Go crunch those worms.
Chris
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OH MY GOD... SV, you crack me up. It's so ridiculous AND it's true. THEY ...all of your team, failed in a horrible, dreadful, unconscienable way. YOUR toenails distress me, I'm so sorry you are having to deal with this and to think that they expect you to trust them NOW?? IDK,,, for me, I'd be going to another system... we, OMG, we should DEMAND that you be taken to a real clinic with experienced, caring people.For another view of your actual condition AT THIS POINT and establish a plan to deal with what needs to be dealt with now, and in the future. This event should be ... well could be made public. SV.. what do you think? We could open a new forum for you and everybody will write to all the cancer centers and get you some GENUINE CARE.
Then you will be confident to move on with any kind of treatment.... Think about it over the weekend and Call a PLUMBER, you don't need to be shop-vac-ing anything. ... Also, we had a washer bottom fall out and flood three rooms. I screamed so long and loud my dh thought it was an animal in the laundry room. But a service came and dried it all up, replaced the wallboard that got wet, re-wallpapered one room and the homeowners ins paid for most of it.
Who can we write? ... The Doctors?
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TEST POST-TRYING TO FIGURE OUT HOW TO PUT A QUOTE ABOVE DIAGNOSIS-HELP SV
NEVERMIND
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Still Verticle,
I did not do chemo but have read some posts where the women say painting your nails BLACK before chemo keeps them from coming off. Worth a try!
pam
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Good morning Girls! Man, there are some incredible women AND information on this thread! Melissa, did you read all these posts???? They are GREAT!!! See, we all support you, & seeing someone going through that un-necessary torture just gets us riled up!
And Connie07 is right! What a great idea! Is there anything WE can do to help you ? Maybe be your "Victim's Advocates"? We could DO it!
I know your's was a "rare case"....but they did it to you! It wasn't anything you did! That was not just a simple "reaction" to chemo.....If they actually admitted to "4 times the dose"....it's possible that they gave you even MORE than that. They might be admitting to just a small amount of actual wrong doing. They have statistics of what they gave you... and what they should have given you. And they SHOULD pay for any further treatment, no matter where you get it! I mean lodging & everything else necessary to get you through this! But by a different Oncology team!
Man, nothing gets us riled up faster than one of our "Sisters" getting mis-treated! I just want to say YOU GO GIRLS!!!!! I'm proud of you! We are WOMEN! Damnit! No-one jacks with us without us fighting back....And cancer is right up there! Jeannette
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Argggggggggggggggggg - that was primal screaming.
SV - I agree with the girls - get a lawyer and sue them. How dare they! You are right - it is crappy enough having cancer much less having your so-called team try to kill you. That is not only unconscionable it is totally unacceptable. Where did they get their medical degrees - Docs R Us?
What can we do to help?
And, if anyone has the right to complain - its you!!!!!!!
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As far as documenting what they did to you, your insurance company can and should give you a copy of the "item" and its cost. This acts as one sure way to document exactly what and when they did it. Just a suggestion, even if you had no copay or deductible.
Another thing - nurses usually know as much if not more about dosage and type of medication. Get the name of the pharmacist who filled the order, the nurse who administered it, and if they give you a hard time, have that documented also. A letter requesting this information confirms that you asked for the details. Again, only a suggestion.
Kathleen, I spit coffee on my keyboard with Docs R Us... How about the branch office called Patients R Us?........ Hugs as I sit and watch the white stuff fall from the sky, straight down, not a hint of wind. The coffee pot is on - stop by if you want and we can work up a plan. Nancy
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SV I havent posted in a while but have been reading yours. I was on prempro for approx. 15 years but thankfully went off cold turkey with out any problems. I am going for a single mastectomy on Monday. Have been told I will not have to radiation just be on the pills for 5 years. My stats are the same as you. None of my Drs. have mentioned chemo, Thank God. I was going to sue the hospital (I worked there 27 years) just make sure you have every piece of evidence you can get your hands on and dont give up. You can do it you really do have a case. You are in my thoughts and prayers. Love to all
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Nancy - would love to! I, too, am in northern virginia and the snow is starting to accumulate. Stupid white stuff.
Darolyn - why were you going to sue the hospital? Did they miss something on a test? Overmedicate you?
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Love and kindness are never wasted. They always make a difference. They
bless the one who receives them, and they bless you, the giver.
- Angelis, Barbara De0 -
I just joined this week, and posted a question, but, now having a problem remembering which forum I posted it. Now, I found this, which is appropriate as I'm 68 y.o. I was diagnosed with DCIS 3/19/09, 0 stage, treated with radiation. My Oncologist felt that I did not need any additional treatment. I recently had bilateral mammogram, negative result, but dreaded 1 week prior for fear of a recurrence. I will be seeing my Oncologist on 2/4 for f/u visit, and thinking of asking him to put me on an aromatase inhibitor just for my piece of mind. My question is,how many out there who have a diagnosis of DCIS and not taking any preventative medication? I have made a lot of dietary changes, workout at the gymn regularly, volunteers as a Reiki practitioner. I also love to travel.
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Hi you mighty pods, have been without electricity and now my laptop won't work so I am in the back of the house in a freezing room to say hi and let everyone know I am fine. Much has been going on. So sorry SV that you are going through all this. We had a terrible ice storm that has knocked down power lines, poles, and trees. I will post some pictures on the mountain thread. JO hope your back has stopped giving you fits.
Just wanted to say and am thinking of you all.
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How do you manage to stay warm, Spar? My SIL and family are in NE OK and are getting slammed too. I guess all the way across to the east coast. Hope you can be warm! And safe... off the roads.
pam
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Sonia, WELCOME to the Forum for The Great and Wise "PODS!" I cannot answer your question but just want to give you a big hello. And Jo-Today, I am just as confused-in fact, had awful panic attack this morning over this. I am thinking did that bastard put me through all of this for nothing? I want a meeting with another ONC in the medical firm (my onc is foreign and I do not understand him well enough). In listening to the tape, I am hearing that both things happened; 1) that they think that I reacted in an unusually sensitive manner to chemo and 2) that the dose they gave me was 75% higher than it should have been (not sure if this was calculated because of my reaction or because of error.) Neither of these explanations make sense to me now. I have no idea how they arrived at % but they stated that next chemos would be a 25% dose of what I got. My decision tonight is to try to get my case reviewed by another Onc at the same firm who is very highly regarded 'among plain speaking women'. This is my life and I feel like I have no true grasp on what happened to me and why. I do not know what the LT SE's will be of all of this. Like since chemo, I have developed massive candida infection on my body-underarms, legs and groin, on and under breasts and nothing is nocking it down. In resp. to this issue, I left my Onc's office with a bunch of new lab requests to check things like "diabetes" which I do not have. Each day I wake up I seem to face new physical and mental challenges from the chemo! I have been stable on my psych meds for depression and PTSD for years and now fear that the chemo will impact that. The chemo seems to be having a profound effect on me neurologically. ERRGH-ENOUGH!!!! ANYWAY, WE AWOKE TO ABOUT 7 inches of real snow on the Outer Banks and I bundled up and took the dogs out for a run on the beach. OMG they were hysterical-Max remembers snow from living in Utah, but Angus has never seen snow and he is quite the clown. He buried his head in great piles of snow drifts thinking this was the best game ever. It was perfect medicine for me as I needed to clear my head, have some fun and get away from cancer for a day. God, I wish I could get away from cancer 4ever right now. Tomorrow first day at church with no hair...sh*t!! To wig or not to wig? Never worn a wig, like ever! These are beautiful wigs (expensive) but I think of all of those 'men with tupees' who really think their "rugs" look real. CRAP! OK, to change the subject, where are the rest of the PODS. I feel like I have taken over the Board with my stuff this week and so sorry. I am missing patoo, rita, spar, carole et all!!! Any snow in the UK Isabella? Wha'd up gals?? (((HUGS)))) SV
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SV - to wig or not to wig? I chose to wig. It was quite fun with several people commenting on my nice new hair style. Since I live in a moderately small town where I taught for over 30 years, lots of people know me and I didn't want to have to explain my story to people who I didn't know that well.
It was a not very expensive synthetic one chosen to match my usual hair colour (grey) and only kind of close to my usual hair style. No one knew it was a wig except the friends and family who knew what was going on. Even my ex stared at me the first time he saw me with it. He had heard what was going on and couldn't figure out why my hair was still the same. I had to tell him it was a wig.
Near the end of the wig wearing, a former teaching colleague who had seen me quite often at bridge told me that his wife had breast cancer and was going to have a mastectomy. I thought he was telling me because he knew about my story. Nope, he didn't know. So I told him and pointed out that I was wearing a wig. He was astounded. (I phoned his wife before her surgery and we chatted)
At first, I was sure everyone would see that it was a wig - seemed obvious to me. The first time I wore it to the grocery store I was really self conscious. The one person I knew and encountered there was a former colleague who said hi and carried on. The more I wore it, the less I thought about it. One of my friends reminded me not to keep adjusting it and that helped continue the sharade.
Now that my hair is growing back in, I ditched the wig and some people are commenting on my edgy new hair style. I just say thank you.
We each need to do this our own way - I'm happy with how the wig worked for me. My grandson said that when I am done with it, maybe I could find him a spare pair of glasses to go with the wig and he could pretend to be me.
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kmccraw This is Dar(Darolyn) I am an R.N. and worked for the hospital for 27years. A girl came in and told her nurse she wanted to give the baqby up for adoptin and didnt go through the adoption process. Her nurse came to me and asked if I knew anyone who wanted a babyand I said yes. I made a phone call and this woman(wasnt even a close friend) came and talked to the mom and both agreed she would adopt the baby. I was terminated because they said I over stepped my boundaries. Every Dr. on OB backed me and went to adminstrtion but they needed to get rid of someone because of productivity. My supervisor had even forged my initials on a program but for every dollar I had the hospital had 2. And yes I could deliver a baby but know nothing about cancer. Hugs to all
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Late today so don't know how much sense I will really make, but first ot all Soniawelcome to you. Interesting question you posed....your Oncologist knows you are ER+ -- is he just waiting for a bit to start you. This is something you should ask him. All the Dr's seem to have slightly different protocols for why they do or don't do things.
You are also a very good example of someone who generally does it all right and gets to hear those dreaded words no one wants to hear or thought they would anyway. This is definitely an equal opportunity disease.
SVMelissa......Sorry about the panic attack but not totally surprised. You have been through so much and no idea exactly what you may be facing as yet. Almost by instinct though, I think you did the right thing. You took your dogs and went outside and had a fantastic time with them. When your world is tumbling down and closing in on you, if you can find a way to open it back up and give yourself some expanse to work with.....suddenly you will notice "you are better". Sometimes we just have to get out of ourselves.
As to the wig --- I say what ever makes you comfortable. I looked a real sight ( not a good one either ) with my bald head so --- going to work for most of the time I wore a wig, but at home and shopping I wore scarves. My friends knew I had no hair but I still did not want them to see me un-covered. I do know what you mean about men and their toupee's but I felt like looking not totally natural was better than being bald which was natural only when I was a newborn.
Hope you all have a fantastic Saturday night. Stay warm.
Big hugs, Jackie
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Sonia....welcome...can't answer your question about preventative meds for DCIS, because I don't know ! There is a forum for DCIS (top right hand side of welcome screen, drop down boxes DCIS forum, sure they'll know. Then when you get your answer come back and chat with us)
Spar, how are you going without electric? I would be in a fix without it, we have no gas...but we do have 3 logburners, so could keep warm, but that wouldn't help me. I would be going mad about my dogs who'd be cold. Are you keeping my little Chee Chee warm?
Melissa SV bet your dogs loved the snow, mine do, I can never get the youngsters back into the house when its snowy here, they just love it....I'm too old for chasing them back in now ! I just stand there at the door, screeching away at them, making all the house cold, trying to get them to come back inside ! We have no snow where I am, but quite a lot has fallen higher up country last night. G/son and G/F have gone skiing, up in Scotland, and reported this morning it was blizzarding up there. Sooner them than me. Hope you decide to wear your wig, the expensive ones look real, NOT at all like men with their silly little toupees, that they think DON'T look a bit like toupee !!! My DH has a full head of hair, white now, he still wears it long, though NOT as long as he used to. I like to see men with long hair ! He used to be a redhead, looked quite wild really...STILL has the redhead temperament!
Dar. I shall be thinking of you as you go for your op. Monday,not long to go now. DO NOT forget the laxatives, you'll need them ! Good Luck.
I have had a very quiet couple of days, well me and the dogs are quiet, DH is moaning about his siatica still !! As I've said before, if men had to have babies ....... He has driven me out of the sitting room tonight with all the noise he makes. I go in to relax, after work, read the papers, watch a little TV....but... tonight, just because I was trying to watch the news programe, which wasn't football, wasn't comedy, wasn't boxing, he was making a real racket. He will LAY DOWN to read his newspaper...and, of course, it won't stay up in the air above him, so he is constantly flapping, straightening, and turning pages over. If only he would sit up straight he ...AND ME... could hear what was going on on TV. Then he had to reach for a bag of crisps, and start munching those, so I gave up, and went to sit at my pc.....but NOT before I had developed a "coughing fit" JUST as the football results came on . HOW strange that it should just happen then !!! He KNEW I was laying it on, so I got out quick before he had a fit !!!!
I am hoping I might get a trip out for Sunday lunch tomorrow, but it could be just that....hoping...I sort of mentioned it tonight, and got "I'M NOT GOING OUT, TOO MUCH TO DO" but, we shall see. My birthday is coming up fast, so don't want to upset him going out too many times!! I am getting asked what I want . I REALLY do not know, I like to choose my own clothes, and don't like to take money, always seems so impersonal to me. I was pleasantly suprised at Christmas. Got a pair of gold drop earings, with aquamarines. ONLY, I found out later, because a new jewellers shop had opened up slap bang next door to the store where DH gets all the farm hardware from ! Bet if this shop hadn't been there, I would have got yet another box of chox !!!
Isabella.
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OMG Spar, I hope you are keeping your noggies warm-are you still without power? Stupid question bec if you are, you won't be reading this quite yet. I didn't see your earlier post-good grief, it is freezing here but we have a big gas powered genny from the olden days when power was a luxury on the Outer Banks.Lassie, while I type, I am doing a test run with wig and hat on. The dogs are staring at me, wondering why Mommy has a 'toy' on her head. Crikey these things are hot and itchy! And Isabella, you have to post pix of your 'edgy' new look! And there is a God-who else would put a jewelry store next to the hardware store? Tee-hee!. And lordy the antics of your DH-is he an old hippy? Long hair? We (I) solved the tele problems by purchasing two of them. I am too old for chasing pups too. I have a special ball thrower that shoots the thing a hundred feet thinking great exercise for the dogs-to retrieve the ball. Tried it out in the snow today. Being dogs, they catch a sent on the way to the ball and off they go-I am the one left screaming in the lane and then trudging after the freaking ball to do it over again. "Insanity is doing the same thing over and expecting a different result?!" As to the wig, I do fear I will get my wig on perfectly and get to church with all of the church ladies wearing their best jewelry and (we hug and do air kisses here) something will snag and pull the rat off of my head, leaving it swinging from someone's arm. Or I'll be in my seat on the isle and the alter boys will accidentally smack me with the giant gold candlestick, only to carry my wig up to the front of the church! Isabella have you left DH stuck on the floor? Your DH is on the floor a lot-How the heck does he get down there with sciatica? Your dogs and my dogs should be together-actually they are English Springer Spaniels-from old English line (lots of freckles and long tails). OHHH, when is your B-day? Love ya' Jackie. Darolynn, if you made it to 27 years in a hospital, you are a winner!! Noone lasts that long in hospital. ((((BIG HUGS))))) TO ALL, SV
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SV - Well, you've done it again. Sitting here with tears rolling down my cheeks. I can visualize a wig on a candlestick. My advice - wear the wig and look like a glamour puss and um---oh, just don't sit by the aisle
. Got 7" of snow here. All the kids (big and small) are sledding down the hill. Looks like fun but I don't like the cold. I hate the cold! Think I am going to go put my pjs on with my big ol' fat robe, cuddle with my kitties and read. Sleep tight.Chris
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