Comedy of errors....not

calgal98

Had my annual mammo which showed some questionable areas so was recalled for diagnostic mammos and ultrasound. I saw all of these and went to my primary to get referrals to a breast surgeon for consult on a suspected lobular carcinoma. I got phone calls from the mammography center asking if I had the films (no, you do) and from the surgeons office asking if I had the films (no, womens center does). No films. Understand the area in question was only on one film and hard to locate. Turns out someone had a gripe with the womens center and took a bunch of films, mine included, and then quit. Great, now what?? My surgeon was great, but now wants a sterotactic biopsy to better define whats going on. Of course I'm scared and a bit miffed at the thoughtless person that would take films from women going through this. I'm hoping that the news is better than what my brain is concocting. I've had melanoma, so know the gut wrench involved in getting a bad diagnosis. Hoped to never have to face the possibility again. I guess I'm just venting and voicing my fears out here in cyber space. Thanks for listening. Will let you all know the outcome in a couple of weeks...Vicki

KathiM

Less than a year post-dx on my colon cancer, my car was broken into. Not only did they take all my computer stuff (I'm a computer consultant), but they grabbed what they thought was more software. It was my FULL cancer folder, complete with pictures of my 2", fungating tumor on my rectum, which was on top. I LOVE to picture them opening that folder, and getting an eyeful of that icky, bloody mess!!!

After my second dx....breast cancer....my films mysteriously disappeared. To this day, they can't find them. These were all the record they had of my 10 year old lump...sigh...

So, I have faced the beast twice. You CAN fight and win, I did....now, 1.5 years COMPLETELY cancer free from both....and they only gave me 6 months to live on the rectal, 3 years ago.

Vent as much as you want, it SUCKS big time, especially the waiting and the redo's....

Hugs, Kathi

calgal98

KathiM said:

Less than a year post-dx on my colon cancer, my car was broken into. Not only did they take all my computer stuff (I'm a computer consultant), but they grabbed what they thought was more software. It was my FULL cancer folder, complete with pictures of my 2", fungating tumor on my rectum, which was on top. I LOVE to picture them opening that folder, and getting an eyeful of that icky, bloody mess!!!

After my second dx....breast cancer....my films mysteriously disappeared. To this day, they can't find them. These were all the record they had of my 10 year old lump...sigh...

So, I have faced the beast twice. You CAN fight and win, I did....now, 1.5 years COMPLETELY cancer free from both....and they only gave me 6 months to live on the rectal, 3 years ago.

Vent as much as you want, it SUCKS big time, especially the waiting and the redo's....

Hugs, Kathi

Thanks Kathi. Its nice to hear that it wasn't just me that crazy things have happened to. With all the things in my medical history that have had funky things happen I've been beginning to think I'm been signalled out for special treatment from the powers that be!! LOL. Thanks for the hugs and for listening and sharing your story. Hugs back to you!! Vicki

cabbott

calgal98 said:

Thanks Kathi. Its nice to hear that it wasn't just me that crazy things have happened to. With all the things in my medical history that have had funky things happen I've been beginning to think I'm been signalled out for special treatment from the powers that be!! LOL. Thanks for the hugs and for listening and sharing your story. Hugs back to you!! Vicki

Ah no...you are not the only one, I fear. This year I got a letter in September telling me that a computer was stolen from the well-known hospital/university I go to. The laptop in question belonged to a researcher who had access to more than just my tumor characteristics--it also contained name, address, social security information on me and about all the other cancer patients that went there. The computer had been stolen mid-summer. I wasn't notified for almost two months. The hospital gave me free security watch service on my credit rating if I so desired it (I did), but fortunately everything turned out cool. I received a 2nd letter saying the computer had been recovered a few weeks after the first letter. It made my blood pressure rise a bit to think that my identity could be stolen so easily as a result of having cancer. No magazines mentioned that little side effect!!!It was amazing to me that the organization hadn't thought to encrypt the personal data so that it couldn't be tampered with so easily. In this day and age, they should have anticipated theft and the costs that would entail. It costs big bucks to have your credit watched in detail and they had to make that offer to all the victims. Apparently they thought to close the door only after the cows got out. It was only luck that all the theives wanted was the computer itself, not the information. With all the HIPPA guidelines out there, I never thought I'd come so close to having my identity publically hijacked, but then it happened. Thanks for sharing your story. I guess I will keep all those films from the past that are cluttering up my bedroom. The docs didn't want to keep them after the operations.

chenheart

Well, my film getting lost/stolen or otherwise destroyed has not happend to me, but it did make me think. As these films do belong to us...(wow! aren't we lucky?) I am considering using the safety deposit box that my bank offers to keep them in. That's where we're keeping our passports, birth certificates, etc...why not our medical stuff? Just a thought.
Hugs,
Claudia

seof

chenheart said:

Well, my film getting lost/stolen or otherwise destroyed has not happend to me, but it did make me think. As these films do belong to us...(wow! aren't we lucky?) I am considering using the safety deposit box that my bank offers to keep them in. That's where we're keeping our passports, birth certificates, etc...why not our medical stuff? Just a thought.
Hugs,
Claudia

Wow, you all have given me pause for thought! I have never had such an experience, but the safe deposit box is a good idea. The old ways are not necessarily bad ways. My Nephew (20 year old college JR) and my Dad (73 year old, retired from several different careers) had a discussion over Thanksgiving about the risks and benefits of being dependent on computers versus self-sufficient and able to do things by hand (you might guess which one was in favor of the computers and which thought we should have a low-tech alternative). I have paper copies of medical records in a file cabinet at home, but the safe deposit is a good backup plan. I hope it all goes better for all of you from here on out.

seof.

calgal98

Today's update is that I called my gp (on board at local hospital) and told him my films had been lost. His referral gal got on the phone and within 4 hours my films had mysteriously reappeared. Seems as though they finally LOOKED for them. I had told them they would re-do all of my mammos for free since it was their responsibility to handle them correctly. Guess you just have to be a squeaky wheel sometimes. I still go for a stereotactic bx on Friday, but now the doctors will at least have something to go on. Should know in a few days whats going on...Vicki

Skybuf

Hi Calgal....sorry for your terrible experience, we just don't need any more problems than we already have do we. Life sometimes takes many turns alright. I had a mammo in 05 and got a letter from the Breast clinic saying all is GOOD and see ya in 2 yrs....that was March 05, seen dr Sept asking for a mammo as I felt something, he said, no need your all clear according to the br. clinic.....went back to him in Oct/05 demanded a mammo...he felt the "lumps on my left br side..oh he said, well maybe a mammo is necessary...duh! Felt like knucles had grown there and it was much shorter by now than the other one. I knew then what it was, mammo, Ultra sound, biopsys 4, surgery, chemo, rads, lymphedema (lymph nodes removed 19) and chemo feet later.......you need to be your own advocate for sure. My daughter had to fight the 'same' dr for her mammo. He doesn't believe in them, but then he's a man!
They do lose files, and important info, so keep track of yours, glad they found your file.
God bless and hope you get great results...your in my prayers hon.

KathiM

calgal98 said:

Today's update is that I called my gp (on board at local hospital) and told him my films had been lost. His referral gal got on the phone and within 4 hours my films had mysteriously reappeared. Seems as though they finally LOOKED for them. I had told them they would re-do all of my mammos for free since it was their responsibility to handle them correctly. Guess you just have to be a squeaky wheel sometimes. I still go for a stereotactic bx on Friday, but now the doctors will at least have something to go on. Should know in a few days whats going on...Vicki

Aren't gp's staff people wizards??? Mine's insurance gal is the reason I don't have an external bag for life...she fought, and fought, and fought for me with my HMO....I LOVE my primary care!

Glad they found your films....ask them for copies...and then (remember my story) store them in a SAFE place (not the trunk of your car, lol!).

Please keep us posted!

Hugs, Kathi

calgal98

The Saga continues...... So I'm all psyched up for my stereotactic core needle biopsy, supposed to take 45mins to an hour. I'm in the gown, the lady takes me to a room with a mamm machine and says "you just had mammograms, why do you want more?" Of course I say I'm not supposed to be doing mamms, but a stereo biop. Her replay is to say that I'm not scheduled for that...ugghhhh...here we go. We had called to reconfirm that I was indeed scheduled for it about 2 hours prior, I'd taken the sedative (good thing as I was FREAKING OUT)and pain killer my surgeon had prescribed for this proceedure. I just started crying and the lady left to go check out what was going on. I went out to hubby and told him to call surgeons office. Another lady comes in and tries to calm me down, about 1/2 hour later she comes back--I'm still in tears, asks if she can do anything so hubby comes in. All in all it ended up okay after conference calling with surgeon and radiologist. It ended up taking 4 hours, I did get my stereotactic and we all ended up friends, but what a cluster **** it was. It was miscommunication on the part of the surgeon/office. Anyway, its done and I should have my results next week. Radiologist did say he thought it would be benign, but as with all ILC better safe than sorry. I told hubby that when all else fails just start crying....they all softened attitudes when they saw how upset I was. Done now....just waiting left. Going out with my daughters and granddaughters to see a Christmas light show tonite. Should be good to be out with happy people enjoying life!!! Thanks for listening to my rants/raves!! Vicki