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I'm back and scared sh**less

Snowkitty's picture
Snowkitty
Posts: 295
Joined: Jun 2010

Hi all.  Haven't posted in forever, but have been following posts.  The good, and the so very sad.  I think of this group often and this board is in my prayers.

Anywho, back in 2010, I got a case of the stage 1, ++-.  Had Lumpectomy, chemo, rads and have been on Arimidex since 9/10 with no complications.  I felt blessed that I got through it so easily compared to many others here.

In June, my radiologist felt a lump in my other breast and sent me for a mam.  Mam guys said they didn't see anything.  My thought was that it was a cyst (I have plenty of them), and that the machine squished it.  What do I know.  In September, my oncologist felt a lump, sent me for a mam and ultrasound with possible biopsy.  When mam dept called for appt, I told them that my oncologist wanted the ultrasound first, because she didn't want a cyst squished.  They said mammo first, then "we'll see."

Well, after mammo, they said..."it's nothing.  Just a spot we've been watching for years.  So no ultrasound for you."  OK, what do I know, they're the experts.

So, come this December, I felt a lump, it itched...a sure sign of a cyst getting ready to break.  I warm compressed it, and it broke.  The lump next to it didn't though.  I went to my primary who sent me for another mammo, ultrasound and biopsy.  Lump came back 56x48x31mm, suspicious abnormality.

Boy was my Onco mad.  They disregarded her order for a ultrasound and now it's staged at 2.  I don't know the total pathology yet, holidays, you know.

So off for an ultrasound of lymph nodes, MUGA scan, PET scan and port.  Oncologist says probably 8 rounds of cytoxin every other week, followed by 8 rounds of Adriamycin once a week.  Then lumptectomy.

I am just so danged PO'd now, and wonder how treatment might have been if caught earlier.  And scared.

Thanks for reading.  Just had to vent.

Cindy

 

 

 

 

Tux's picture
Tux
Posts: 541
Joined: Aug 2009

Snowkitty - (Love your name! - I live in the Midwest & I have got 4 snowkitties at my house

right now!)  So sorry to hear of you dx & of all the snafus that went on.  And no one is working

over the holidays, so it will take forever to get a plan.  I will be keeping you in my thoughts

& prayers...

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

Cindy -I'm sorry you're dealing with the rollercoaster, AGAIN. I know the hardest thing is to wait. Are you taking any anxiety meds? I took ativan during my time and it helped tons! All I can suggest is that you don't jump into conclusions until you have the entire report and plan. But even with that, try to stay positive at all times. I am guilty of this too! Don't go online. Try to do relaxing things and if you can, you can take some enxiety meds to calm you down, for now. I know this is very upsetting, but please think you'll come out of this too. I will add you to my prayers. Remember we're here for you and please keep us posted about everything, when you can.

Sending you hugs from NY.

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Cindy, I am so sorry for all that you have been through!  Geez, talk about a roller coaster!  Hang in there though.  I was Stage 3 when I was diagnosed and even had metastasis 3-5 years ago (5 years from initial symptoms and 3 from "official" mets diagnosis).  As bad as that sounds, it has been 25 years since my first diagnosis and I am back in remission, working and doing well.  Sending big hugs and prayers.

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

to hear that things are not going well. I would probably be PO'd too. Waiting is the hardest thing to do. You want something done now and even a few days are very stressful. Please try to focus on something else until you have all the info and then you can go into the battle full force.

Hugs,

Georgia

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Sorry for all the run around you've been through.  Gotta wonder why they didn't listen to your onco's order for starters.  Makes no sense.  I understand the holiday delay because I just had a 6 mo CT and waited 1 1/2 wks for results.  Everyone was on vacation.  All I did was toss and turn and stare at the ceiling each night, until someone could get back to me.  I'll keep you in my prayers.  Hugs, Linda 

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Keeping you in my prayers Cindy!

survivorbc09
Posts: 4378
Joined: Jun 2009

I'm so very sorry Cindy.  I would be livid too!  I'm praying and sending you lots of hugs!

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

it just shocks me that you were denied the ultra sounds considering your BC history!! This is just crazy! I am so so sorry for you, I can not believe the way you have been treated and quite honestly it scares the hell out of me that this could happen!! Many prayers for you and (((hugs))) too.

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

That is why you should have copies of the results of all tests and your oncologist notes from your appointments.  If anyone states that they will do this and your doctor has order something different, you can show them the hard copy.  Then one ask to speak to the head of the department.  Never, never allow the appointment clerk to make a decision or a tech for you when it isn't what was ordered.

You are your own best advocate.  Mistakes can cost you your life.  In Cindy's case, it still remains a local recurrence which is good.

Medical errors happen all the time.

Best,

Doris

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Cindy,

You have learned the hard way as I did, falling through the cracks, as they say.  

You must be your own advocate.  You need to receive the report of all the test you take.  They belong to you, you (or your insurance) paid for them and they are not that hard to understand.  You need to have a copy of your doctor's notes for each appointment.   This way, you have a hard copy of what your doctor has ordered and discussed with you.

When the Mammogram department or any other wants to do or change something against your doctor's orders.  You ask to speak to the head of the department, if you don't have what your doctor ordered, you can call your oncologist or go further up the ladder.  Never accept anything that isn't what the doctor ordered.

When it happened to me, I went from local to a regional recurrence and then to stage IV.  They didn't miss once, they missed twice.  No one plays with my life anymore without my permission.  I have all my paper work.  When I receive a copy of my doctor's note, if the notes state something that didn't happen, (sometimes they become distracted while dictating) I make my own note on the paper.  This way, we can discuss it at the next appointment.

The good news is (and I'm certain your not regarding any of it as good news) is that your still local recurrence and have the same stats as the first time around even though you went up a stage.  I am so very sorry your going to have to go through treatment all over again.

Best wishes on this new journey,

Doris

 

Snowkitty's picture
Snowkitty
Posts: 295
Joined: Jun 2010

for all your comments and good wishes.  Tomorrow starts with ultrasound fo nodes, Friday is port, Monday is PET.  Still waiting for appt for MUGA scan.  Cross your fingers for me.

I do have all my records.  Oncologist showed me on records, that my last ultrasound she ordered was CANCELLED.  She almost burned a hole in the computer screen with her eyes when she saw that.

Thanks, Cindy

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Good luck Cindy with all the tests.  

 

Doris

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

All the luck I can send is coming your way!

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Oh Cindy,  I'm so sorry you have to deal with all this again.  I had a local recurrence, in my case the treatment was just surgery.  You may want to consider filing an official complaint, most centers have a fairly easy process for this.  I do hope your treatment plan takes care of this.  Please let us know how you're doing.

Hugs,

Linda

 

 

VickiSam's picture
VickiSam
Posts: 8501
Joined: Aug 2009

I am so sorry about this latest news!  The fiasco leading up to your  diagnosis is unbelievable and discouraging.

I just wanted to post to see if you are okay, and how things are progressing.

Please post when you can.

 

Vicki Sam

disneyfan2008
Posts: 5514
Joined: Oct 2010

I had lumpectomy 2008 and went for routine mammo and not routine ultra sound. Mammos came back OK...ultra sound showed a fairly large spot! Had biopsy and then surgery (about month ago), IT was so close to my ribs it did nt' show up on mammo.

 

Denise

jnl's picture
jnl
Posts: 3873
Joined: May 2009

So sorry Cindy.  I will be praying for you.

 

Hugs, Leeza

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

Cindy, you've got all the prayers you need and even more!

Lynn Smith
Posts: 1265
Joined: Mar 2011

Wishing you the best on your tests.It's terrible to have to wait.I had a mammo last July.I have a inverted nipple(sign of cancer) on my non cancerous breast.I've had it for many years but nothing.Last july I had a discharge so my oncologist ordered a mammo.I got to the breast center and the doctor came out to tell me he always does a mammo and a ultrasound and it will be a short wait till the doctor sends the order.He said he wants both done not just the mammo.He was cautious and detailed.I like that even though I don't like the testing. 

I have a benign tumor in my cancerous breast that is being watched.A fibroid tumor.It is worriesome but unless they grow I think they are OK to leave alone. Had a cyst years ago but it was drained and no cancer found. it had grown is why the doctor drained it.

I seem to go through alot like you.Always something.

Lynn Smith

 

 

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