Thoughts/Opinions on MRI Results for very High Risk

Curlylocks

I would like to introduce myself.  I am not new to these boards, myself am a 7.5 year bc survivor - diagnosed with bc at age 41.  I lost my sister last April to breast cancer.  Now my older sister (50) is going for biopsies next Tuesday.

A little history on what is going on with my older sister....she had her regular Annual Mamogram in January this year, got a call back more testing and they determined she had cysts.  Fast forward to May 22/13 she had an MRI due to high first degree risk of bc and dense breasts.  She got a call back to go for more testing, compressed mamo and ultrasound last Thursday.  The ultrasound confirmed a 1cm lump in her right breast that needs to be biopsed.   She was originally scheduled to have that biopsy next Monday, however, got another call from the hospital saying they were cancelling that biopsy and rescheduling it for next Tuesday as they have reviewed her MRI and now want to do a biopsy of her left breast too!

I am terrified that she now has bc as well.  That would make three sisters with bc.  My Mom is still alive (73) and was never diagnosed with it.  I was the first one who had the diagnosis.

What are others thoughts on the chances of this being negative for bc despite our strong family history...some days I wish I had a crystal ball!

Michele

MelissaDallas

Curly, I'm sorry. I love my sister more than anything and that must be really frightening.



Your Dad could be the gene carrier instead of your Mom. Have you girls had genetic testing?

Curlylocks

My Dad passed away last year too on June 24/13, god bless him.  He had cancer twice, third time it was pancreatic that spread to his liver. He was gone in 2.5 months after being diagnosed.  It makes sense when you say he could be the gene carrier.

My sister who passed away was 44, she had genetic testing done about four months before she died.  Her test was negative.  Here in Canada, the guidelines are a little different than in the U.S.  They wouldnt do genetic testing on my older sister as she hadnt had breast cancer, but did genetic counselling so she could get into the High Risk Screening Program to get an MRI.

I have never been tested, had an appt but cancelled it...this was before my younger sister was rediagnosed a 2nd time in March last year. At the time (it was about 2 years ago)  I didnt see any benefit in getting it done as I had my ovaries removed at age 44.  I will reschedule now for the testing so that I too can get into the High Risk Screening Program, they wont do an MRI on me unless I do...pretty stupid considering I am a bc survivor.

My other sister who is ten months younger than me lives in a different part of Canada, she is eligible to go for MRI`s every year and has been for several years.  She has never been tested, again as she is not a bc survivor she wont be eligible.  Another criteria, is you have to have three living first degree family members with bc and sadly the fact that my youngest sister is no longer living they dont count here into the equation.

Michele

rozem

curly - im in canada aswell -is the question what is likelyhood that what the MRI picked up bc?  i had 2 spots biopsied that showed up on the MRI (and nothing else) and they ended up being b9 so it is likely that it is nothing.  MRI's pick up everything.

as for you getting an MRI - i was told that i would be screened with an mri (if i had kept my boobs) but i think that was because i had extremely dense breasts and mammos were useless on me.  However, I would think with your family history and your history asking (insisting) on a MRI would not be unreasonable.  I was treated at sunnybrooke and they always sent me for every test under the sun - no questions asked.

Curlylocks

Rozem,

Believe it or not I have to fight to get an ultrasound done each year with my mamo despite a script being written by my GP.  I am so tired of arguing with the hospital and having to defend my decision for getting the ultrasound done.  I switched doing my screening from my local hospital to Brampton Civic for the same reason.  The hospital asks if there have been any changes or concerns (ie. reason for getting ultrasound done with mamo)... like NO...I never want to be caught off guard again.  I feel like yelling "just do the damn test" as requistioned.  Their response, the radiologist will decide if the ultrasound is needed, so when did the radiologist become God?  Last year when everything was going on with my sister being so ill ,I didnt have the strength to argue with them and got my first call back ever since diagnosis.  I freaked....had they done the ultrasound...the callback wouldnt have happened!

Also, my sister had to fight to get the MRI (had to go to genetic counselling first at Credit Valley).  I have been told by the Hospital that I would have to do the genetic testing to get into the High Risk Screening program despite my Family History.

Michele

rozem

curly - so sorry you are dealing with this.  Pardon my french but that is b**shit if you ask me.  There is obviously something going on in your family even with a negative brac result - you, your sis and possibly another sibling sound like a good enough reason to be extra vigilent with screening.    Yes the radiologist usually recommends the u/s based on whether they feel they can get a good read with a mammo.  If your breasts are dense they always recommend a u/s.  I think i would have had to fight for an MRI which is one of the reasons I did the bmx.  Can you get referred to sunnybrooke?  they have a new breast center which is fantastic - maybe being followed by a breast specific center would help you get the tests you need

Curlylocks

An update on this post ---my older sister now has bc has well. She was just diagnosed this week, she has decided to do a double mastecomy due to three sisters now being diagnosed with bc. I have made an appt with my doctor for next week. I too am going to do a double mast, I can't accept my risk for reoccurance now! I have already had bc once...don't want to give it another chance to come back.

My sister has invasive mammary (combination of ductal and lobular) and atypical (pre cancerous) in her left breast.



I will have the genetic testing done but the problem is there are only the two genes that have been identified as genetic right now. I could still test negative...but obviously there is something defective in our genes to have three out of 4 sisters with bc!



Damn I hate cancer!!!