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looksee1 04-23-2009 06:16 AM

MRI if no immediate family history
 
Hi, I am 40, my grandmother and greatgrandmother died of breast cancer. I have calcifications in my right side that we are "watching." The mammo and ultrasound are negative. I have very dense breasts, and they can never see anything on the mammo, so I asked about MRIs. I was told that they have a lot of false positives that would probably lead to an unneeded biopsy and my insurance won't cover it b/c I am not "high risk." I am having a lot of wierd problems in that breast like itching, extra lumpiness. Should I have it anyway? Technically, I can scrape out the $3,500 for the thing... it's certainly worth more than my life, but they are treating me like I'm a paranoid nut. Your thoughts would be appreciated.

NY 1009 04-28-2009 09:53 AM

Re: MRI if no immediate family history
 
Looksee1,
You are not being paranoid in the LEAST!
I was just told by my new breast surgeon two weeks ago upon 1st visit that just being a WOMAN puts me at risk for getting breast cancer.
both of my sisters have had breast cancer and one of my aunts. Plus my dad had colon cancer and brother hodgkins lymphoma.
I am at higher risk than others, but that does't necessarily mean i will wind up getting breast cancer. just being a woman these days puts us at risk and younger woman are getting it too.
it's nothing to put lightly.
what happened to me is I had to go to see my gyno for an annul exam when really all I was supposed to get was a refill on my estrogen patches. I dont' have any ovaries or uterus or tubes anymore due to a total hystectomy when i was 45. I"m now going to be 49 this June. I happened to mention to her my right breast feels dense and painful to some areas of the breast.
I had my mammo last fall and it was all clear.
my gyno didn't want to take any chances being I'm high risk and sent me for an ultra sound at my local hospital.
I never thought I'd get a phone call from my dr.telling me I have the choice of either waiting, or go to see a breast surgeon for an evaluation just to make sure I'm safe.
I chose to see the breast surgeon.
she sent me for an MRI, Now the radiologist in that hospt. wants to perform another ultra sound herself because something suspicious is showing up on the MRI on my right breast and my dr. said that MRI's can cause false positives and they just want to see if I need to get a biopsy performed. I have a choice as to which dr. will do the biopsy. either the radiologist doctor or my breast surgeon who both perfrom them different.
one does it with an MRI guided biopsy, and the other one with an ultra sound guided biopsy. so I"m pretty confused at this point as to who is my breast dr at this point. I thought i was only seeing one dr. but they must be working together?
anyway,
my point to you is, any woman is at risk. I felt a change in my breast. it feels thicker and more dense when I examined it. actually I've BEEN feeling that longer than a year now. I jsut never said anything about it being my mammo came out clear.
IF I never said anything to my gyno at the time she ck'd me, no one would have ever referred me for an ultra sound which led to the MRi which may lead to having a biopsy and maybe finding a malignancy.
it's all freakish how it happened.
IF I have a malignancy, the mammor and the ultra sound never saw it.
only the MRI did.
the report of the MRI says that if the thing winds up being benign, I must have a follow up MRI in 6 months. so it must be something they're very suspicious of.
they're not making a big deal out of it and are just matter of factly about it.
so I"m not worried about it.
the thing that bothers me the most is waiting for his ultra sound to find out if these two drs want to perform a biopsy. and IF they do, they're also going to test one of the 3 nodes that enlarged also in my breast and along the side of the breast. the things measures 2.5 x 2.8 cm. and in the left breast they say they think are what fibroadenoma's and that the largest one measures 6mm

I think I had to have the ultra sound first before I was able to get the MRI.
it goes in steps. otherwise the insurance companies give a hard time paying for it. even with family history.

it's just the process.
I say go through the steps it takes to get an MRI and keep going to a dr. you find who will do it.

good luck to you,

sincerely,
LInda

shisslak 04-30-2009 08:48 AM

Re: MRI if no immediate family history
 
Looksee, you do what is best for you. I had a thickning in my left breast. Nothing showed on the mammo or ultasound. I played the 6 month wait time and really kept a close eye for any changes. Well, I felt some changes after about 5 1/2 months, so when I return to the breast surgeon, who again was not very impressed, I insisted that a biopsy be done. He was not happy but did agree to perform the procedure. It turned out that my non existing thickness was in fact a pre-cancerous mass that was removed. I took tamoxafin for 9 months, however, I had to stop taking the medication because of some serious side effects.
In terms of having a breast MRI. Yes there are quite a few false positives and also an increase of biopsies. My first Breast MRI led to 3 MRI guided biopsies. Thank heavens they all came back negative. I also have a large fibroadedoma that is being watched. Typically fibroadedoma are benign, what they watch for is if they suddenly begin to grow.

Linteck--it is also stanard practice to have a follow-up Breast MRI in 6 months after having a Breast MRI guided biopsy.

Having a Breast MRI is a personal choice. I chose to get the MRI because at the time I had a young child at home who I really would like to watch grow, get married and have children. I still have that child--she will be 13 next month. Still am enjoying watching her grow, I am just not happy with the pre-teen-teen years.

I also really lost some faith in the medical world when I had to fight to have what I knew was a mass removed and biopsied. We have all these options available to us, however, for some reason, some doctors are hesitant to use them.

The bottom line is do what feels right to you. If is concerns you, than fight to get answers until you are satisfied.

Looksee and Lintek

Good luck and let us know how you both do.

looksee1 05-01-2009 05:13 PM

Re: MRI if no immediate family history
 
Thanks for your input. I too have small children at home, and that is my reason for pursuing this. I would like to see them grow up.

NY 1009 05-02-2009 09:17 AM

Re: MRI if no immediate family history
 
Dear Shisslak,
so what they mean by a false positive with MRI's is that it will show something is there? when it's really nothing there? or is it showing a possible malignancy and it winds up being benign?
you felt something there when the MRI stated something was there.
I feel something there and the MRI is stating something is there too.
so what i really have find out now is whether it is a malignancy vs. benign. right?

what exactly do they mean by "false positive" that there's a malignancy?

I was so upset the other day when I went for my follow up ultra sound. I got there at 8 am on the nose.
I even had a premoniton that something was going to happen apptn. wise.
I even CALLED the hospt. to make SURE I was booked, but no one would pick up the phone in the imaging facility. the operator at the hospt. told me they open at 7 am. but no one picked up. I was going to confirm the apptn.
I did find out that I hadn't preregistered, so I wound up doing that when I got there.
so when I walked into the dr's office and stood there to give them my name, they said I wasn't on the schedule.
my heart dropped to hear that.
I FINALLY was going to have the darn test to find out whether we were going to pursue the biopsy.
I asked them if an angie was there and they said "yes" but that she's not there right now. I told them she was the one that booked the apptn.
I KNOW I wouldn't have booked the 7th of May becuase i have a colonscopy booked for the next day. it would be too close for me to book two apptn.'s together.
I even highlighted and wrote down the exact time when I initially spoke with angie when we booked the apptn.
the secretary went on to tell me that someone cancelled their 9:30 apptn and could I wait an hour and half? I decided to wait and stayed on the grounds and had coffee and read. etc.
I went back, got into the robe, went to sit down on the exam table only to have the nice technician tell me the dr. had a biopsy going on and another one right after me, which meant I'd be seen in between patients and that I'd wind up having to wait anywhere between 2 hours or more.
I was so upset. I asked her what she thought I shoudl do, becasue I want to maek sure I get the best treatemtn and not have it rushed.
so we opted to post pone my apptn and they fit me in at a time where there are no biopsies going to be performed around my time slot which winds up now having me to wait till May 11th.
I am very upset about this. I finally was going to have my mind put at ease only to have it blown away again.
this waiting is effecting my mental health. I'm finding myself wanting to do research on breast cancer and what other breast cancer patients went through before and after diagnosis.
i shouldn't be doing this to myself. but I can't help it.
If it's cancer, then I will deal wtih it. All I know is that I'm losing weight quickly, my health has been declining the past year at a fast rate and no one knows what to do about it. My breast surgeon said I must find a doctor to see because I dont' like the one Ive been going to for years.
all he does he refer me to specialtists who do nothing for me.
I have bone pain all over. a new spot each day, I have no appetite and when I finally do, nothing tastes good to me. I feel weak, can't even walk up a flight of steps and I look terrible.
losing too much weight on a woman looks horrible. I am not happy about it in the least. I went through a similar incident before I had my hysteectomy back in 2005. now it's happening again! and this time i"m worst. the bone pain and aches and pains are horrible. I"m on pain medicine that my rheumy dr gave me but we have no reason as to why all these sytmptoms are going on.
so I'm at the point of a break down. I'm tired of seeing dr.s and just want it done!
I am ready for any diagnosis, as long as I get one.
thank you for listening to my griping and moping around, but it's hard not to become frustrated at this point.
thank you for your reply.

good luck with everything too.
I only have to go for another MRI if it winds up being benign.

it's the ultra sound and biopsy i"m waiting for.
everything is wait, wait, waiting.....

sincerely,
LInda

shyloe 05-05-2009 03:59 PM

Re: MRI if no immediate family history
 
Hi... Just my experience on this one.

If you would feel more comfortable getting an MRI then go and get one, its another tool that they will use along with the Mammogram and an ultrasound to make a diagnosis.

I had my general yearly appointment last October. The mammogram showed a cluster of calcifications in my left breast which apparently is an indicator for DCIS. I then had an ultra sound but this showed absolutely nothing. I had additional mammograms to double check the breast. From this they decided I would need a biopsy. So I had a sterotactic biopsy, as the calcifications couldn't been seen via ultrasound the needle was guided by xray and computer. From there the diagnosis was DCIS but they were unsure of how much was there. The mammogram indicated 5cm and the biospsy a little more so they sent me for a MRI to see if that could give more information. The results of the MRI showed 8cm. For me that meant I had to have a mastectomy. So off came the left breast. Once the path results of my breast came back it showed 19cm... A very big difference from what the could see using 3 different diagnostic tools.

None of them is perfect when used on their own, they add value when used in conjunction with each other... and sadly even then it seems they don't 'see' everything.

Like I said if you want the MRI and can afford it go for it but its not a pefect tool either.

Good luck.

Lisa

NY 1009 05-06-2009 07:54 AM

Re: MRI if no immediate family history
 
I just want to thank you all for sharing your personal story of how your diagnosis was found. It's very important for woman to know this, because otherwise some might not KNOW to do further testing such as an MRI.

If I wasn't referred for my MRI, I wouldn't be possibly getting a biopsy because my mammo and ultra sound didn't show anything. I feel something there, but like you said shyloe, some times these modalities don't show certain types of malignancies and not the exact size and shape of it either. NOT till you have the biopsy can they absolutely tell how large it is.

I am learning SO MUCH MORE on the health of the breast in this past month than I've ever learned in my entire 48 yrs of life. Thanks to the fine woman like you who are willing to come and share their valued information.

It's unfortunate that you have a diagnosis of breast carcinoma and i"m very sorry for your misfortune. That's why I find it so special of you to come and share your wealth of information with us.

I think I"m better able to learn MORE by hearing what woman and men go through with their own personal experiences than I would learn just by doing a search on breast health.

the information you shared with us can save peoples lives. I think an MRI is the best thing they could have come up with to use for seeing changes in the breast. I'd rather have a false positive and wind up getting a breast biopsy than not having the MRI and missing a cancerous lesion, thinking that just a mammo and ultra sound is effective enough. well it's not. Not for high risk woman.

thank you.

sincerely,
Linda

shisslak 05-06-2009 01:12 PM

Re: MRI if no immediate family history
 
NY 1009

Breast MRI's have a high false positive rate because it is a very sensitive test. A false positive result does not mean a malignacy. It means that the MRI sees something that looks suspicious enough for a radiologist to suggest a biopsy. A Breast MRI sometimes picks up an abdomality before it can be pick up on a mammogram. The results are read by how much enhancement a lesion has. They will time how long the contrast takes to absorb into a lesion. The contrast also highlights the look and shape of the lesion. Depending on who you talk to, some breast surgeons are not to keen on ordering this test because they feel that women end up having unnecessary biopsies. Other breast surgeons think that this is the best test in the world.

For me, a mammogram only gives a limited amount of imformation because I have such dense breast tissue, which as a radiologist would tell you is like looking for a needle in a haystack. Breast abnormalcies on mammograms show up as white, which happens to be also how dense breast tissue shows up. A Breast MRI can cut through the dense tissue and give a better view. But like I said it is very sensitive and normal abnormalties can look like questionable abnormalities. So a radiologist will do a needle biopsy to suck out the area of tissue and send it onto pathology to have it tested. The good thing about this type of biopsy is because these lesions are small and the radiologist is able to get the whole lesion out. Some women, like myself have no problems with being better safe than sorry.

I hope I have explained false positives a little better. Good luck on the 11th and let me know how you did.

looksee1 05-09-2009 07:29 PM

Re: MRI if no immediate family history
 
Well, I went ahead and had it yesterday. And, as luck would have it, my insurance in the end agreed to cover it. (I guess they just say they won't to discourage women from having them. Nice.) Anyway, I don't know the results yet. I hope they are ok.

NY 1009 05-18-2009 08:03 AM

Re: MRI if no immediate family history
 
Looksee1,
what were the results? I hope everything went well for you and that you won't need a biopsy. but then again, I'd rather wind up having a biopsy either way.
I want to know for sure without a doubt that it is not malignant.
yeah, insurance companies.
they usually want the patient to go for other testing FIRST, then they'll pay for you to have the MRI if an ultra sound was peformed first.
I used to work in a doctors office and I was the one that had to call to get authorization for our patients.
thank Goodness they permitted you to have it.
now we're waiting to see what happened.
hope you get this reply.

Shisslak,
thank you for explaining the negatives positives and how common it is. it's all getting twisted and confused to me. the false positives, the negative positive, etc.
its' all mind boggling.
I finally went for the ultra sound. I had to wait soooo long for the radilogist to come in a do the exam herself after her technician had already done it.
that's what she does with every single patient of hers.
I just found out too that my breast surgeon always orders an ultra sound before a biopsy too.
the technician couldn't see what the MRI picked up so I thought I was going to be home free from having the biopsy. so when the radiologist doctor did the exam herself, she found it right away. the technician watched her perform the exam as well. this way she learns more.
the doctor said that if I hadn't had the MRI, that anyone could have missed the lesion what the MRI picked up. Plus she has a well trained eye being she's also the director of this facility and her years experience doing this.
she also found something in the left breast as well. but stated that she thinks the one in the left breast looks like it might just be benign because of the shape it but wants to make absolutely sure and will biopsy that too.
so I'm going to have the needle core biopsy, not the fine one, and it will be bilaterall. I thought I had to make the apptn. with the radiologist doctor for the biopsy so when I went to the front office to book the apptn. the girl asked me what type of biopsy. I was surprised the dr. hadn't gone to HER first so I didnt' have to tell her.
now I know why.
I made a mistake.
I was supposed to just have the ultra sound and then call my breast surgeon to let her know I had the exam and then we'd go from there.
so I'd already made the apptn. w/the radiologist and the girl told me to call my brst surgeons office to tell them about a script that will be needed.

so you can imagine my confusion when my breast surgeon wound up calling me two hours later after I got home stating that the radiolgist and her spoke and both of them agreed that I need a biopsy and she said lets make an appointment. that's when I told her I already did and it was for June9th.
they couldnt' fit me in earlier because a bilaterral takes 1 1/2 hour slot.
the girl didn't want me to wait this long but I told her it's ok. I had no other choice and that if someone cancelled to call me.
anway, the dr. said she couldnt' believe the radiologist was trying to steal her patient away from her.
I was SO embarrassed that I caused all this ruckus.
it was MY fault. not the other doctor.
I finally got a chance to explain this to the surgeons office this morning when they called me to set up another date becasue we cancelled the biopsy w/the radiologist. so NOW it's going to be peformed on June 4th at 9:00 a.m.
finally. a set time.

the surgeon explained to me in detail what will take place. how they're going to put in a needle to numb my breasts, which will be guided by ultra sound biospy. they'll make a small incision, take out the samples, then put in titanium markers for future use if more surgery will be needed.
this way she'll know where the exact spot is, being it's difficult to see it, they'll put a bandaide on each incison and then I can go home.
easy isnt' it?
then comes having to wait for the pathologist to read it.

did you have any instincts or feelings that yours was going to be benign?
I wonder if woman have instincts?
I just read somewhere that there are no symptoms if it's caught early.
that's the whole purpose of doing more extensive imaging so that it can be caught in an early stage which means a better course of treatment and a successfull rate of recovery.

I'm a little nervous about this I have to admit.
after all, I grew up fearing the word breast cancer. because it used to be that breast cancer was a death sentance. but now with all the new technology and new treatments and early detection, we dont' have to feel that it's the end of our lives if we wind up getting it, right?
I'm right on this, correct?

oh well, at least I finally got the ultra sound performed and now know whether I needed the biopsy or not. that part was really getting to me.

I'll be back to let you know what happened.

till then,
take care of yourselves.

sincerely,
Linda


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