I have no more faith - can't do ! The Latest!
The tech and radiologist even said well you have very "BUSY' breasts, there are many more cysts in there -we can't asperate or biopsy them all. Tried to blame it on my cycle - don't they always.
The radiologist called the surgeon who called my husband before we left the hospital to schedule an appointment with her next Tuesday.
I don't want to see any of them, I don't want to go anywhere near a doctor ever again, I don't trust any of them, what if they have missed other things, my breasts area a mess, not one single thing has ever shown up on mammo, what is my surgeon gonna say next week, oh we made a bo-bo, woops, we gotta cut you open now just to be safe and take it out! I was so excited about seeing the new doc, so recommended and wwaited so long to get in, I don't trust anything anymore.
This is such $#@#$. I finally stood up for myself, I was my advocate, and where did it get me, in a worse mess.
I want these dam things gone. I hate them!!!!!
Comments
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Cathi,
Yep, when it comes to faith, you have a valid reason not to have any in your "new" radiologist and "old" surgeon! Shame, shame, shame on both for not coordinating together and for delivering on the trust you bestowed upon them both. Equally as bad is your surgeon for not telling you personally no three o'clock biopsy was done and how she was going to "fix" this problem.
But you must do "this" some more, you got to take the hit, suck it up and show yourself and your spouse and paradoxically them that you're stronger than both combined in spite of their mistakes. Whether you stay with them is up to you, but one way or the other you've got to carry through to get a diagnosis at three o'clock....
It's a sad couple of days in breast cancer land, when people like you bestow your trust, just to have it trampled upon and all here in general get told breast cancer treatment is a like a walk in the park.
Kinda makes you wonder what our doctors would be like if they walked in these shoes??
I'll be pulling for you
Tender -
Cathi, Try and have faith, there is some greater reason for the delay's, what I don't know! But for the doc's to pospone calls and to make remarks are inexcusable! Stay strong, keep your records and BE YOUR OWN ADVOCATE!
I agree w/Tender if they only had to walk just one step in your shoes!
My prayers are with you!
God Bless
Cindy -
How I remember those exact words "This will be a walk in the park" they have said it about virtually every aspect of my treatments over the past year, I have not seen a park yet, I know so many of you have had to endure far worse then me, I truly admire you all. But nothing has been a walk in the park, I have felt somedays I was not "intresting" enough, I have felt like they really just don't give a hoot, I so feel like the medical profession has nothing to do with care & compassion anymore -it is just big business -big $$$$!!! I don't want to give up, I don't want to die, but I seriously feel like calling it quits w/all the doctors and just forgetting about all this and just take what life hands me.
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Quote:
How I remember those exact words "This will be a walk in the park" ...I have felt somedays I was not "intresting" enough, I have felt like they really just don't give a hoot, I so feel like the medical profession has nothing to do with care & compassion anymore -it is just big business -big $$$$!!!
How wise you are Cathi. Thankfully, many, many doctors bemoan the change in medicine you've described from what was in the past. They know the system is failing in some ways. Let's hope it can be sured up through their professionalism, their forward thinking, and their refusal to let this time honored profession fall and fail.
But we and your loving spouse are here to urge you on. So go ahead and vent all you want. We hear you.
Tender -
I hate being so angry and mad, I think if one more person tells me to "look on the bright side" I will scream. At least I found the mistake! What bright side is there, I don't remember a bright side this entire year+. I was told I had cancer, I have had my boobs cut open and poked with needles 5 times now, I have had lymph nodes removed that cause me swelling & pain, my left breast is still 3times larger than the right from 33 radation treatments, oh yeah and of coarse the healing from the burns of the booster -that I was told would be minimal. I was given a medication that virtually rendered me useless for over 3 months, my brand new husband had to shower me, force me to get out of bed, drive me to & from work because the pain & dizzyness was more than I could stand. He had to refuse to take me to work because I could not stand, and now it seems evident the only way I am going to have even the slighest piece of mind is to have my breasts ripped from my body!!! So right now I am having a hard time seeing a bright side!!!
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Oh sweetie, what an awful time you're having. I'm so sorry.
What can anyone say to make you feel a little better, but sometimes you just need to vent without really expecting someone to wave a magic wand or say something profound to make you feel better.
I don't want you to think that I'm trying to "better" you in the "how awful my life" is stakes but....it may possibly help you to hear my little tale of woe.
I had a disasterous diep in March in the UK (where I live)
My odioud PS told me how pleased he was with the procedure and also told me that I should be grateful!!!
I did get very depressed, then I discovered NOLA - and these boards. Life seemed brighter again. I booked a date in July to have revision surgery & booked flights and accomodation. Paul and I were so excited and looking forward. Not only do I look awful, but I have almost constant discomfort or pain from the "lump".
My beloved Paul died very suddenly of a massive stroke in June, he was 41 and was in perfect health.
Everything of course was cancelled. However, I am in the process of reorganising surgery. I have a wonderful friend who is going to come with me.
Since the last lot of e-mailed photo's however, I have been warned that my surgery is so disasterous that it's thought it may have to be removed altogether. I would then have to go thro the whole thing again, using donor site from my rear!
It's so easy to give advice, but you really must stay strong. Your body needs your inner strength. It sounds as if you have a very supportive husband. Please try and think of how awful he must be feeling having to watch you endure everything. You have each other. I would happliy have my breasts ripped from my body if it would get me back Paul - now it does sound as if this is more about me than you, sorry. Everything is relative isn't it, we all deal with ups and downs in our own ways. I know you'll pick yourself up, just give yourself a bit of time, take a deep breath - and get back on the horse! Realistically, what other choice do you have. You may be willing to die for your husband (to save him any pain) but are you willing to LIVE for him?
I so hope that things get better for you.
Sending a huge hug across the miles............ xx -
I am so sorry for all you have endured, I don't know how I would ever do this without my husband, I don't see it as possible, you are a strong woman. As everyone here is, I cheerish the strenght, knowledge and help that I receive from everyone, I hear your story and others and I think inside how dare I be so upset, but I can't help it. I so clearly remember our first ride home from the doctors office when we found out about the ILC, I said out loud (and I really believed it from the info I had been given) ok it's June now by the end Of September ('06) this will be all over. So stupid -so wrong!!!! I don't know that it will ever be all over -even w/mastectomy, Im 47 I don't want to live 40 more years always looking over my shoulder.
My husband is the most wonderful, I cry so hard sometimes just for what he has to endure with all of this, I feel quilty over that, he was never married before me, he told me last year when we got married he waited 53 years for the perfect woman and he found her - I don't think so.
I am so sorry for being such a baby - but I am sick of all this, and the really hard thing is I know that can't go backwards, I keep wishing that - just go back to last May -when life was perfect!!! -
You all enspire me so, I think this whole CANCER thing has just gotten to me, my dearest friends husband had his lung removed yesturday from met kidney cancer that was dx in October, I so feel for them, and I know that other than just being a friend I am helpless in doing anything to ease their fear and hurt. I look at my beautiful 3yr old granddaughter and just so want her to know who I am when she is older, I don't want to die before she has those memories. I am sure i'll snapp out of it - I know I have to, I can't tell you all how much you help me, XOXOXOXOXOXOX
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This post has touched my heart. I was right where you were, sick and tired of being sick and tired. The night I had to take 11 pills before a new chemo and my mouth was drier than a dogbone I got on my knees in the bathroom and cried out to God, "I can't do this anymore" I was a nervous wreck, panic attacks, shaking. When I finally found out that I couldn't do it, that is when the strength from above came over me. There is great power in prayer, when we totally give up and give it over to the Lord. It is true. As long as I fixed my attention on Jesus, I was able to keep on going. Only way I got through chemo was to listen to songs of praise on my CD and then I wouldn't cry. Life is very tough and we do not know why some of us have such valleys. But I do know that we come through stronger and more appreciative of life and better able to relate to others walking the same road. I now work in hospice sitting with dying people. Holding their hand and letting them know that this life is not the end. See, you will come through all this and be a better person. You will grow so much and be able to give so much to others. Rainbows come out after the rain, and you my sister, will be more beautiful than you can imagine. LIfe is more than hair, housework and boobs! It is being the beautiful person you are inside and helping others! That's where the blessings are! Love to you, Sandy
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Cathi,
I can so totally relate you the horror you are experiencing with the medical profession. I stood up to breast cancer and did what I had to do, but the most devestating thing for me is the lack of trust I have for the very people that are suppose to treat me. I have never been treated as a whole person. Surgeon saw a breast removal, med onc saw chemo, rad on radiation, NONE of them seeing the whole of the picture which also includes the mental anguish, financial difficulties, relationships with friends and family, and just the flat out fear of constantly waiting for the other shoe to drop. I hear you sweetie and the thing I am going to say is: IT SUCKS.
"Tomorrow will be better" "Have a positive attitude" "You will get passed this" and all that crap? Everytime I hear it, it pisses me off. It so invalidates the very invasive aspect of this cancer on our lives.
You will do what you have to do cause you have no choice. However you are not alone, and you can always come here to us, who understand and have been (or are) exactly where you are. Vent, cry, bi***, laugh at the absurdity, whatever you need to do.
Sending a big hug out to you. Marsha -
Sandy thank you, I do pray and pray alot, I pray not that this all be over, I pray for sterngth & knowledge to get through this, I was born and raised catholic, my husband hi mom was (Amish - shunned when she married Ed's dad (methodist) While we both have a belief in a greater power then us, he finds it sometimes amusing that I have so many "signs" come to me, a song on the radio, a fully cloked nun (I saw one the other day - amazing first time in years) don't think I didn't get back to my car and say a few "Hale Mary's" , we went to the market the other day, neither of us had a single bit of cash on us, there were ladies collecting for the up coming BC walk, I could /not would not shop until we went to the ATM and went back out and donated. All these little quirks crack him up, but he loves it to. And I do believe and I do know I will get through all this - one way or another, I really do believ where ever the journey leads it is meant to be, and the ending will be perfect.
I think I feel some better today, thanks is such a part to all of you, Marsha you are always so inspiring.
I so wish I could see the new doctor before the 28th, I am so anxious about what they have left inside me. I have thought so much about the bilat mastectomy these past months, I know it is what I want & need to do - pretty scary though - I gotta admit, my boobs have always been a bit itty -bitty so it can only improve that! Ha
It is funny though I think having them off doesn't have as much make me nervous as having reconstruction - don't know why - maybe it is a 'SIGN" (Don't do it - ha!)
Again, so much I appreciate all your love and support. and I send big hugs back to you all. -
Hi All, I want to thank you all so much, I sure could have used some one on one these past couple days, my latest tears have turned to extreme anger, and right now I think that is good, because I am so mad -I just won't let this D$#@# CANCER S%$#$ beat me! We saw the regular surgeon regarding the free ultra sound and the one ordered by my GP I requested because of the botch up w/the mammatome 2 weeks ago, this is so overwhelming I am not even sure I can explain, but somehow I have gone from having them miss the biopsy on the 3oclock to now not only having that but have 3 more areas of suspicios concern in right breast that do not meet "simple criteria" irregular borders, hemmorage/debris & some solid! Want an immediate biopsy on all next Tuesday - that is the day we were to see the new surgeon/onco. Called his office t/t nurse they suggest having it done before seeing him as the radiologist who read the reports my GP ordered is one they also use and the new doc would order it done anyway, so I guess it is back for more cuts & needles. I was so beside myself the past couple days, continued tears (thats what I do) then I get mad, I was told stuff about ILC, I had never known, how "SNEAKY" it can be, I learned my past radation can play a major impact on mastectomy & reconstruction, no one told me the stuff I have learned here in the past couple months or the stuff I have now been told by the doc's I know my choices would have been so diffrent a year ago, my boobs would have been long gone by now. I most likely would not be headed in for biopsy # 8 in a year!!!!! I am mad and from now on I will never allow myself to be not in control my my life, if a bad choice is made it is going to be MY BAD CHOICE -NOT THERES!!! Love & XOXOXOXOXOX TO ALL
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Oh, Cathi. I don't know what would comfort you after all of what you've had to endure. How frustrating to say the least! No wonder you're in tears and so very angry. I just want you to know that you are in my thoughts. I'm sending hugs and healing light in your direction. Please keep us posted.
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Thank you, I am not sure if it makes sence or if it is possible but somehow I think the anger that I have now is good! It is making realize how much I have to be the one in charge, I just can not and will not ever again leave this horribel thing 100% in any doctors hands. I will not allow them to dictate my life any longer.
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Cathi, Geez..... I am so pissed for you! Having such a hard time myself with so many docs not talking or communicating! I finally called the Breast Care Center of Florida Hosp. Spoke to a wonderful woman named Judy who helped me tremendously. I am going to Orlando, I think they are located in other areas as well. Let me know if you would like their phone #. Just in case you are not happy with your visit or what you are told next week with the new doc. The surgeon I am seeing went into a lot of detail about Lobular and adviced me to have the other breast removed which I am doing Oct. 1. Hang in there girl, and anger sometimes is what it takes. Lord knows it beats the weeping willows all the time! Nothing better when you feel like this but to tell someone off!!! Sounds like someone in your medical team deserves it. Big hug ((((((((Cathi)))))))))))))
Marsha -
Thanks Marsha, hope hope you find the answers / docs you are also looking for. I am very eager to see the new doc, just incase for you also his name is Dr. Peter Blumencranz- Surgical associates Of Florida, but he is the "BIGGIE" for Powell Cancer Center & Susan Cheek Needler Brest Center in Clearwater, also heads up alot of reserch for Moffitt Cancer Center in Tampa. I know that does not make him God, but at this point getting another opinion sure is not going to hurt. So I will have the 4 biopsy's nest Tuesday -yeah!!!! Can't wait (being nasty) and my reschudled appointment with him is 9/11 (what a date -perhaps this time it will mean something good!)
I so lost it in the regular surgeons offic yesturday, many many tears -but much anger too!! I just said I am so sick of noone giving a S$#T!!! And just throwing me aside like trash. -
have you heard that song that goes "when your faith is gone you can borrow mine"? Well, I'm sending some of mine for you to borrow. I'm having my breast MRI the same day (Sept. 11th) and will be thinking good thoughts for you.
Anne -
I have my first month follow-up with the rad onc on Sept 11. Sounds like doctor day to me!!
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WOW - I think it is going to be a good day for everyone. It just has to get better some time I think. I was in one of those dam crying jags today, and anything and everything seems to just get under my skin, I really think I have just finally reached some kind of emotional overload, I was even thinking that I should t/t my GP and perhaps get an anti depressent or something, I liked it better yesturday when I was mad, I felt more in control. I got my pre-registration call from the hospital where they are doing biopsy on Tuesday, asking all the normal junk, then she asked do you do monthly breast exams - "are you kidding" I don't even know what they are supposed to feel like anymore, to swollen, to poked, to cut on to many scars. I was hysterical by the time I got off the phone. I have decided though that when all this is over, I have the mastectomy & all resconstruction is done, I am going to Greece and laying on a topless beach and flaunting the new me!!!!! You are all welcome to join me!!! Love & hugs to all.
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Hi All,
My stomache is just in knots today, waiting for tomorrows biopsy's, I feel like I am just in a cloud. I have read so much this weekend almost can't stand it anymore, read something good -then something bad, don't know what to think anymore.
Does anybody have any ideas about what "complex appearing combination of cyst and solid lesion with deep septations and low-lying echoes" could indicate. I know all I really can do is the biopsy on all 4 and wait for the reports, AGAIN! Hope they get it right this time. -
Cathi,
You've gone through so much these last weeks, now approaching a proper analysis of left breast at three, and the surprise of three right breast findings on sonogram. It just makes me want to be there to give you a hug, hold your hand. One small ray of sunshine through this cloud may be that you are marching forward, not backwards, and not remaining in the unknown much longer, albeit way longer than you ever should have.
Breast ultrasound is done "real time", meaning the interpreter's analysis of the sound waves as they pass through the breast tissue is the basis for his or her final conclusion. Pictures are taken of course, yet never quite as sharp or good as being there. Breast "cysts" can be complex as one of yours apparently is: more than that, wagering an interpretation of the terms solid and low lying echos is difficult as quite a few possibilities exist. I should think the fact that this particular finding is not completely solid is advantageous. The truth will lie in the biopsy result, and we're all hoping they will all be b9.
Thanks for letting us know how you are Cathi. This has been a long haul for you and yours. I will keep you in my thoughts today and beyond.
Tender -
As of my posting this morning plain Hell it seems like has happened. I have refused the biopsy procedure tomorrow and right now I am not sure I will ever step foot into another doctors office again, I believe I should just put my trust and faith into God, maybe thats what all this stuff is all about and let happen what will happen.
The hospital called this AM basically demanding my $800 co-insurance tomorrow (this is co-insurance not co-pay). I told them I would not have that available, and @ another facility I was told my co-insurance would be $1200 (my 20% of procedure) we paid it after my insurance setteled my portion left to pay was $193, and there a hospital sat w/$1007 of mine. So I did not feel comfortable waiting months again to get my $$$$ back that was much needed. Anyway one thing led to another my husband called surgeons office to discuss this (she was in surgery) but her receptionist read some intresting reports to my husband (I am sure she should not have) pretty much revealing that she and 2 radiologist did not agree on anything about last US findings, some say MORE - SOME SAY LESS, I just can't be cut up anymore by these people they just don't know -they just don't care!!! -
I feel for you Cathi. It's enough that we have to deal with the disease but all of the insurance sh#x just adds to the mix. The social worker at the hospital where I'm receiving treatment, told me that if I had any financial/insurance concerns that the social workers would assist. Of course, I haven't tested this out. It's worth a try. My onc also told me that if the insurance company refuses anything, to let him know. I know you are tired of all of this. You and your husband need an advocate.
Thinking of you.
Shrink -
I find it so hard to believe that I have great insurance through Blue Cross, I pay all my co-pays upfront as I am required, my co-insurance I thought was not due until service was rendered and insurance paid what they were going to for the billed amount. Thats what happened with the mammatome, hospital wanted the $1200 coinsurance upfront, they charged $17,000+ for procedure, but Blue Cross paid them something like $998 and I was left only owing $193 NOT $1200 and there was a hospital w/my money! I am sick of the doctors, the hospitals, this seems somehow unreal, the past 4 weeks just have to be a bad joke or something, so much BS!!!
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so sorry about all you are going thru cathi. I have not seen dr blumencranz--but i am told he is one of the very best in the west fl area. although they say his bedside manner is not the greatest--his abilities are. Good luck with your appt on 9/11---i hope you will find the help you need. the important thing is--do not give up hope and do not ever give up fighting
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Cathy
I know how hard this is,, first to deal with cancer, then with all Dr's....all the needles, tests. biopsies...Its ok and very normal to get MAD, UPSET FRUSTRATED....You will have days when you just want to cry, scream and ask WHY? YOU NEED to keep the faith, I know how hard it is at times, I am now on round 3 of my cancer. First dx 5 yrs ago with Breast, recurrence, last yr, and now this yr just few weeks ago spot showed up on my lung, I just had my 2nd lung biopsy. and waiting now for the next step. surgery and Possibly chemo again, I get Angry, upset. cried and cried, but WE ALL need to keep our faith and HANG in there, These women here on boards will be there for you, hold your hand, support you Vent, scream yell, curse, on here, whatever it takes, but, KEEP FIGHTING,, LOVE YOU LADIES! -
For the ladies in the Tampa area ,there is a fantastic surgeon in New Port Richey. She saved my life. After being followed for 18 mos. by a different surgeon, she noticed things in my mammos that no one else did. I started the every 6 mos. mammo/US for a palpable lump that wouldn't image. She sent me for a MRI and found cancer in a different area in the same breast, did a biopsy as well on the lump. Found both IDC and ILC. Did lump. followed by bilateral mast. This DR. and my onc are starting a breast clinic in Trinity and they are fantastic. If anyone wants the name and #, please PM me. Great women Dr's who really care!!
Tara
P.S. Heard Dr. B. was good, but he was out with a hip fracture while I was undergoing diagnosis and surgeries. I have a friend who used him, she was not happy with results. Have another friend who used to work with him and she says he is wonderful. -
Dear Dr. Kritsky,
As I am sure you know by my many visits to your office I am not very good at verbalizing my thoughts /opinions. But today I do find it necessary to express the emotions that have overtaken me this past month perhaps this entire past year.
As I expressed last week it seems as if my health, my life is of very little importance to anyone these days. I had overcome the fear of dieing from this stupid breast cancer stuff I was feeling good and happy, and now more so even then when I was told I had cancer I feel out of control and question myself about my choices and the care that has been provided. Perhaps I am over reacting I dont know anymore, but I do know I am not comfortable anymore with anything that has been told to me this past year.
Ed and I want you to know so many things have gone wrong through out this past year they have left me feeling like this is just NO BIG DEAL!! To me it is a big deal.
The recent situation with St. Pete General and now with Largo Medical Center have left me with such a bad feeling, I am not sure what I will do from this day on.
Cathi Helm
Hi Ladies,
I faxed this letter to my current surgeon yesturday - I could not stand it anymore, right now I never want to stop into another doctors office again, she called me back but I just could not take the call, she must have left a 20 minute message on my VM apologizing, she did care, she has a plan. I don't know how to explain, but she is a good surgeon as far as surgery goes I think, another words all my cuts scars are good, it is the treamemnt the referals to onco the diagnosis she sucks at.
I spoke with the hospital social worker yesturday, her exact words to me were 'because I am still paying off year old hospital bills, they can't be stuck holding the bag on another procedure!" And I have insurance and am getting refused treatment, I can't image how hard it is for those without anything. I keep telling Ed I want to take a "Breast Cancer" break, just pretend it didn't happen, forget about it all forawhile, never mention it, never think about it. He says we can't, I am gonna try, maybe I can. I haven't gotten anywhere with paying attention to it.
If I do go to DR. Blumankrantz, I have been warned he is not "Warm & Fuzzy" that will be ok I guess, warm 7 fuzzy won't cure anything - knowledge does. I just might PM for the N.P.R. doctor it is only about 45minutes from us, we have family up there. But I truly -truly -truly don't want to ever see another doctor again.
Thanks for all your suggestions , love, help & support!
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