First Mammogram & Ultrasound after initial diagnosis

rosyFL

Today I had my first followup after last years LCIS/ADH diagnosis.  It actually was overdue by 2 months.  I was a complete and total basket case because I am living in a different state, FL, and things are done much differently here. 

My mammo was as usual, with many views taken probably close to 15 and even after all this time my lft breast is still very sore from the lumpectomy so it was so painful.  Here's what I found to be different.  My NY ultrasounds were always bilateral and very extensive, going into the armpit, and every inch of each breast was covered. 

Here in FL they don't do bilateral unless there is something suspicious on the mammo, even though my lft breast was the LCIS breast, they weren't going to do the ultrasound.  I said I wanted it, the doctor's script was written as bilateral, but let me tell you these ultrasounds were nowhere near what I was used to getting. 

Radiologist said some calcifications still in the left breast, but no biopsy needed.  He went over all my films and ultrasounds including an MRI I had in NY prior to today's tests. Recheck that breast in 6 months is his recommendation.   I can't even find a surgeon here that accepts my insurance, although I did meet a really good one when I had my emergency appendectomy on Christmas Day! 

So now I'll be off to the onc for breast exam and blood work next week.  I cannot take tamoxifen or any other drug due to other medical problems.  If I were healthy, I would have gone back to NY to be checked.  I don't think they do a thorough ultrasound here in FL.  I'm also limited by my insurance on where I can go because I am not on medicare yet and my insurance is NY insurance. 

I'll get a copy of the report so I can see how they rated this exam.  Sorry if I sound like I'm ranting and please forgive me if I'm not making any sense.   Thanks for listening. Rosy

ED2012

Hi Rosy,

I just a couple of weeks ago had my first 6 month f/u after dx...although my imaging test this go-round was the breast MRI...another first for me.  I can appreciate how hard it must be to move to a totally new area and establish relationships with a completely new set of medical professionals.  You didn't mention what area of the state you are in...but if you were to post that...I am confident that there are women on this site that could point you in the right direction.

A couple of things you said are worrisome to me:

-LCIS by nature can occur in either the dx breast (ipsilateral) or the undx side (contralateral)...hence supporting a need for BILATERAL imaging

- Also wondering why are they having you go to an oncologist instead of a breast specialist? 

I hope you get some help in locating reputable BC care....Having both been raised in FL and then briefly practicing there as an RN...I know it can be a mixed bag...the ladies on BC org will help steer you in a good direction!  I just want to encourage you to go with your gut.  If you felt you were getting top-notch care in NY and that the care in FL is not measuring up...keep searching until you find a team down there that provides the level of care that meets standards.  NO CUTTING CORNERS WITH THIS DREADED DZ!!!!  Wishing you all the best!

rosyFL

ED2012,

I had the bilateral mammos and what I considered not very good ultrasounds.  I'd love to go to a breast surgeon, but there are none here that accept my insurance, and this is what is limiting my care.  I was sent to an oncologist by the breast surgeon in NY, because she wanted me to take the tamox (which I cannot take), and then we moved to Florida in the middle of all this mess. BS's do not prescribe tamoxifen or other chemo preventive drugs. 

I could see a BS here as a private pay patient for exams, but if I need surgery, I certainly would not be able to pay out of pocket for this.  I don't want to cut corners, but right now these are my circumstances.  Onc here does my breast exams and gets my reports.  I have no choice right now.  I don't know what I will do if I need surgery. 

rosy

leaf

I am followed by an oncologist (and I am not in NY or FL).  I chose to be followed by an oncologist because

a) I can't stand my breast surgeon and

b) I have multiple medical problems, so I'm sure my oncologist would understand them better than a surgeon.

At a major medical institution near me (a NCI-certified center), breast surgeons follow LCIS patients, and prescribe tamoxifen/antihormonals if the LCIS patient chooses that prevention.

Possibly I am followed less than other LCIS patients who post here, but I just get yearly mammograms and twice-a-year

clinical exams.  That's all the NCCR recommends. http://www.nccn.org/patients/patient_guidelines/breast/index.html#/60/

I'm not saying I'm entirely happy with that, but that's all they recommend.

ED2012

Hi Rosy,

I am so sorry if you thought I meant for you not to cut corners...I meant that towards the medical people who weren't being as thorough as your people in NY. Again , apologies for any misunderstanding, I only meant to send support. As far as the onc...I asked bc I was told I didn't need to see one and in trying to navigate these still unfamiliar waters, I find I am always on alert to learn about something I might have missed.

I really hope some of the FL ladies pipe in here so you might find some help. I can't imagine having to worry about out of pocket on top of all the rest.

Best wishes!

rosyFL

ED2012,

No need to apologize, and I appreciate your support.  I just feel that my care here will be much different than what I was used to.  I believe that if you take tamoxifen, then you would need to be followed by an oncologist, at least that was my understanding.

I would be more satisfied with once yearly mammograms and twice yearly clinical breast exams.  I just can't believe the amount of radiation I was exposed that day.  Radiation causes cancer, and I believe that this had a big part in my diagnosis. Just my personal opinion. 

leaf, I didn't like my BS in NY.  I thought she was a "hot mess".  She just said to me after my surgery and pathology reports came back "Do you still have your uterus?  You'll just take a pill".  What an idiot.  Then she recommended a terrible oncologist, who I instantly hated the minute he opened his mouth.  I did see a second one, before moving down here, who was more informative, but still was not taking into consideration my other medical problems and wanted to put me on tamox. The onc here is Florida was the only one who said no drugs due to my bad lungs. 

I thank you both for you input.  (Actually, I'm kind of hot mess myself, LOL).

Rosy

leaf

Except maybe if you choose bilateral mastectomies, docs will be wanting to follow LCIS patients for their lifetime.  So its good to have a good relationship with a compatable doc.  I think its good to search until you find the doc that can support your circumstances and choices.

rosyFL

Saw onc today for follow-up to go over my diagnostic reports.  Recommendation of radiologist, 6 month diagnostic mammo of left breast only.  OK, that was fine with me.  Now this is where I went nuts (to myself).  Ultrasound of left breast only, even though the script called for bilateral US, radiologist refused.  Report stated after very brief description of findings, Comparison: None.  What? I gave the imaging place 5 years worth of ultrasounds (and mammos) and the report says none!  I'm calling them because now I don't even know if they looked at what I gave them. They have had the films, sonos and reports since November 2012!  I'm furious. 

Rosy 

Anonymous

Rosy---my breast care center has questioned the need for bilat imaging a few times. I just tell them LCIS is a bilateral disease, hence the need for bilateral imaging studies, and that the script from my doctor states bilateral mammos (or MRI). That usually is enough to get them to follow thru with bilat testing.

I've  been followed by an oncologist for over 9 years, (possibly because I took tamox for 5 years and now I've been taking evista for nearly 4 years); I haven't seen a surgeon since my post-op visits after my lumpectomy almost 10 years ago. I feel more comfortable with an oncologist as they are the specialists in cancer, not the surgeons.

anne

rosyFL

I did call the imaging center and was able to speak to a different radiologist who said he looked over all of my films and ultrasounds (after I complained to the office manager) and he doesn't know why the original radiologist put "none" next to comparison for my ultrasounds.  I told him I was very upset that they did not follow the prescription for bilateral mammos & ultrasounds, and he said it is usually up to the radiologist to make that decision.  I never heard of such a thing.  It should be done the way the script is written, regardless of what the radiologist thinks.  I'm still not happy about this but it is all that is available to me here.  The onc told me to call one of the hospitals here, but they no longer do mammos there.

I made a mistake in an earlier post when I said they only did an ultrasound of my left breast, it was my right breast that had the ultrasound due to many cysts in that breast, even though my left breast was the LCIS/ADH breast. 

I'm now scheduled for a left breast diagnostic mammo in August, and right breast mammo in February of 2014.    Onc said after this, if everything is ok, I will go back to once yearly mammos and I hope ultrasounds. 

I found a really good surgeon, but he does not take my insurance, so I will have to pay out of pocket.  I think I will go and get a breast exam, since the onc did not do such a good job.  Surgeon's office told me not to worry about the money, that they would work something out with me for paying. 

auntiems3

Rosy-

I agree, I never heard of the radiologist having the last word on what test to perform.  They are supposed to follow the script (my ex is a radiologist). 

Many (30-40) years ago the rads to the breast in a mammo were much greater and we use to be conservative about doing mamms at all, but the exposure time is GREATLY reduced and US is no risk at all!

I think it is important to know your rights as a patient.  You may request to have your films re-reviewed by any of the radiologists in the group without any extra charges. 

I like to have mine read by the same MD every 6 months, so I know she recognizes my films and will most likely take more time with them.  Believe me they remember names really well after you have had dozens of these.

When they send me the letter with my results...I look at the name of the MD who read the films and if it was not my preferred, I call and ask that they set them out again for her perusal and I have never had a problem. 

Exercise your rights! - Marie

rosyFL

Hi Marie,

I am really trying to do that, but things are done much differently here.  My radiologist in NY has looked at my films for over 25 years so he knows all of my breast issues, plus all of the radiologists in that group also look at them.  Much more thorough. 

My NY reports always said at the end of the report, it states:  "This mammogram has also been analyzed by the CAD digital computer-aided detection system." 

They don't do this here. 

auntiems3

Rosy-

I understand your frustration.....it sounds like you really know what you are doing.....but you are in a time-warped area.  It sucks to live outside a Metropolis.  I am sorry

Marie

Graciej

Rosy. Complaining is always allowed. Why so we have to suffer with a mammo? Why can't they use light compression? Also ultrasound is key. Get next one in NY if possible. Good Luck.

rosyFL

I'd go to NY tomorrow if I could.  But I have other health issues that prevent me from traveling right now.

I also just found out I lost the oncologist who was doing my follow-ups here in Florida, because they didn't renew their contract with the insurance company.  I'm hoping they straighten things out before my August mammo and appointment. 

I found a really good surgeon to do my follow up with, but I will have to pay out of pocket.  Doesn't take my insurance.  What a sad world we live in today.

rosy 

auntiems3

I understand how you feel Rosy.  The first PS I wanted to see last year in my area dropped their contract agreement with my insurance carrier.  I then canceled my appointment since I could barely afford the 20% copay much less a full surgery.

Since then I found a wonderful bs and ps and hour and a half away, but I get to deduct the mileage.  Oh yeah and the original ps is accepting my ins again...but it's too late.  I love my new docs better!

Hang in there Rosy, there is always a new opportunity waiting for you if you are open to one.

31 days and counting down....

Marie

rosyFL

I didn't want to start a new topic for this, so I'm putting it here.  I received a bill from where I had my breast MRI done in NY for my co-pay.  This is from May of 2012 and it was just settled, because even though it was approved at the time, the insurance company didn't want to pay.  The cost of the MRI was $9,309!!!!!  I almost fell of my chair.  I will not be having another one any time soon.

Insurance paid a small fraction of this charge, which was accepted because they are participating providers in my plan.  This price is shameful in my opinion. 

Anonymous

rosy----omg!  I've never heard of a breast MRI that expensive.  I had mine in NY (near Albany) and it was $2257 (plus my oncologist requires a pre-MRI blood test, which was $51)----my insurance discounted it all about 2/3; I still will end up paying almost $800 toward my deductible.

anne

auntiems3

Yeah, Jeez Rosy, that is really high!  I paid a 20% co-pay which came out to $900.  Is there any way to travel to a more Sophisticated Hospital?    Is the one you go to privately owned?   That might explain things.

rosyFL

While I only had to pay a small co-payment, my view is that because the insurance companies pay so little, the doctors and facilities are charging overinflated prices in order to recover as much as possible.  This is becoming more and more common. 

This was done at a well know facility on LI, North Shore University Hospital in Manhasset.

My breast surgeon also from LI did this also.  She submitted a charge for an office visit of $500, and that's absolutely obscene as far as I'm concerned.  It's things like this that are going to cause insurance costs to skyrocket, and it's going to get worse, because doctors are going to start dropping out of insurance plans and medicare.  Many already have.