Joining BC sisters and having MRI confusion

NVaggie

Greetings All! This forum is God sent and I have found sooooooo much great information here! Bless you all.  I'm 44, mother of three and diagnosed 3/10/11 with DCIS, intermediate grade, non-invasive in left breast that also contains many scatterings of micro-calcifications.  I was overseas when biopsy was done and came back to the States to get treatment, leaving my husband and son "down under".  I selected a surgeon who ordered BRCA testing, Fish test and MRI. Insurance FINALLY approved and I've had BRCA sent off and MRI done this past Monday, 4/11.  My surgeon called with written report that showed "activity" in both breasts but report did not see clip in left breast or recent biopsy.  I was on 5th day of menstrual cycle and I know that there is only a 10 day window to get good MRI readings.  I've been findings lots of controversy for breast MRI's and that it sends doctors on wild goose chases.  As MRI found no invasiveness (thank you Lord!) it still freaked me out about what may be going on in right breast.  As I know DCIS does not show up well on mammo or MRI, I am anxiety ridden.  I'm preparing myself to say farewell to at least one breast. Not both!  Has anyone had these types of MRI results?  I'm way too exhausted to chase geese!

NVaggie

Thanks and yes I do need more info.  I must have misunderstood then....I was told that it's hard to tell DCIS because it is "in place" therefore no bloodflow going to the area and that is how MRI detects "activity".  On to more research.....

cycle-path

JBinOK is right -- MRI can't tell whether there is invasiveness or not. What does your pathology report say? Why were you sent for HER2 and BRCA testing? AFAIK it's very unusual to test for HER2 in DCIS Stage 0.

mrsnjband

Without an mri they wouldn't have found my bc.  I decided to do a BMX which turned out to be a good decision for me as I had precancer cells on the other side.  Make the best decision for you. NJ

LiveFreeinNH

I had a suspicous sighting in my opposite breast on MRI also. It scared me but was due to menstral cycle also,( they think). I have had 2 lumpectomies with not clear enough margins, and am facing either a third (I doubt it) or mastectomy(probably) in right breast. I am finally deciding to forgo recon for now. I just can't decide. That is a problem with the luxury of not being in a hurry with DCIS. And there is soooo much information it is mind boggling!.I cannot wait too long. I want it over with.

NVaggie

I do have a family history of cancer and my Her2 was "equivocal" or vague/borderline.  The Fish test will just further assess the number of copies of the gene and how many signals the cancer cells are receiving to grow. Any markers that can define or give a more precise profile of my DCIS may be better in the long run.  I was told that my DCIS is a bit more aggressive (still educating myself as to why).

 Obviously, the best test is a biopsy and as frustrating as that is, I just may have to have more in my right breast.  I'll know more once my BS gets the MRI films tomorrow.  I was just very confused as to why my BS used the term "lots of activity" and felt that it wasn't showing anything concrete. I am now, however, finding more articles on how high-grade DCIS shows up well on MRI, so.......... deep breath.  I'll hope for the best tomorrow when we have the films in hand.

I agree with you LiveFreeinNH that there is soooooooo much time and I too just want it over with.  I call it my "roller coaster ride on the slow boat to China"!  The right decision will come with time and trusting your gut, your brains and more importantly, your doctor. I just know it!

LiveFreeinNH

I know it too, NVaggie, but some days...I love your roller coaster analogy. It is perfect.I know it is wise to seek more opinions, get alot of information, but it seems the more I read and hear the "confuserd" I get. I think I have made up my mind and then   I read about someone's bad experience.

Anyway I hope you hear something encouraging today. 

I have not had genetic testing...maybe because I have no family history so , I know nothing about it....maybe I should ask about that... another thing I need to know

cycle-path

NVaggie, please ask your doctors for a copy of your pathology report. If you post the information from the report, the people here can help you understand it and answer many of the questions you still have like why your DCIS is "a bit more aggressive."

IronJawedBCAngel

You might want to ask for the report on the MRI also, in addition to your pathology.  There are benign breast conditions that can cause some enhancement that may never cause any trouble.  The report should give some indications as to what the activity is.  If a biopsy is recommended, that should also be on the report. I keep a file with all of my mammogram films, MRI reports etc.

Ask as many questions that you need to so that you have complete understanding of your cancer, before you make any final decisions about your surgery. 

Hugs to you.  The early stages of this breast cancer diagnosis are not easy.

NVaggie

Thanks for the hugs IronJawedBCAngel. I was a mess this morning and after I met with my BS I feel a little more comfortable. She wants to get BRCA test back then if it's negative she will perform a biopsy on two other suspicious areas in left breast.  

The MRI report stated "inner lower quadrant, consistent with multifocal DCIS".  But in right breast no calcifications just "suspicious abnormality in right inferior breast in the inner lower quadrant". After my BS reviewed the MRI films she did not feel that there was a reason to biopsy as there is not one specific area.  She even performed an ultrasound in her office on the right breast and did not see anything suspicious.  The dilemma here is that the MRI showed lots of highlighted areas in both breasts. If I knew for certain that I had DCIS in all the areas highlighted then I would be wheeling myself into the OR this minute!  She felt that these areas were normal tissue. She herself does not see the abnormality and wants to use this MRI as a baseline and have me get another in 6 months.  

Cycle-path, my path report is from Australia.  I must say that they did a great job and were very thorough in explaining everything.  I had a biopsy here in the states 10 years ago which was benign juvenile fibroadenoma and I was rushed in and out without any explanation after biopsy.   Anyhow, the path report states the following:

Multiple Foci of ductal carcinoma in situ with solid and cribriform pattern and extension into lobules.  Intermediate grade nuclei and multiple foci of calcification. A focal central necrosis is present. Other smaller microcalcifications are present within microsystic lobules.  No invasive tumour is seen.

Estrogen receptor status: positive 100% of nuclei stained, predominant staining intensity: 3+. Progesterone receptor status: Positive 20% of nuclei stained, predominant staining intensity: 3+; HER2 Status: 2+ Equivocal. Myosin heavy chain: No invasion seen.

My family and friends are telling me to just deal with the left breast DCIS that I have now and not to get freaked out about my right breast.   I wonder if it would not hurt to go ahead and get a biopsy on the right.  It's just that the area in which to biopsy is so vague.  Would it be unlikely to have multiple DCIS with calcifications in left and DCIS with NO calcifications in right?  It's just my mind wondering and dwelling on the "what if's".  I know I just need to trust my doctor and take it one step at a time.  

  

IronJawedBCAngel

It's not all that common to have DCIS present itself in both breasts, but I know women it has happened to.  For your peace of mind, I think I would ask for an MRI guided biopsy.  For myself, I know I would really want as much as possible to try to only do this once, surgery, treatment, etc., which is why the ACS, Komen, and most breast cancer advocacy groups recommend the bilateral MRI before any surgery.  An ultrasound is not going necessarily going to see anything that the MRI does, and my concern is that the radiologist actually termed it suspicious.  If your surgeon does not perform MRI guided biopsy, get your report and your disc and go to a facility that does for a second opinion.  That is what I had to do in 2009.  Rather than spending thousands on the complete diagnostics every three months that my surgeon recommended, I had the peace of mind of getting a definitive answer of benign breast disease.  Hopefully that is all that you are dealing with.  Be your own best advocate and do what you need to do to be comfortable with the whole process.

NVaggie

I agree Ironjawed!  So I spoke again with my BS again and she said that the radiologist was going to suggest that an MRI be repeated in 6 months but he had learned that I had been diagnosed with DCIS so he revised his findings to include the word "suspicious".  She had to calm me down but really felt that we should just watch it.  My girlfriend's husband is a radiologist at another location so I called him to look at the MRI results and he agreed that another MRI should be done later.  I would prefer the expert to concretely say "all's good" but at least I've got a little peace of mind with the second opinion.  

Thanks so much for that advice!  One question.....how did you do on the tamoxifen? Looks like I'll be on it either way.  I'm no where near menopause and hear that it's the "grand prize" as a side effect.  Just wondering.  Have a great weekend!

IronJawedBCAngel

Finished my five years last July, with relatively few problems other than hot flashes and some joint pain. The hot flashes were at their worst the first two years, after that they really cut down in intensity.  I had a hysterectomy in 2006 but stayed on the tamoxifen as its kind to the bones.  My onc really would like me to go on to Arimidex, but as I already have joint pain from years as a horse trainer, I am reluctant.  I have no regrets about taking tamoxifen.

NVaggie

Good to hear.  Just learning about all the options.  I'll take a look at Arimidex too.  Sorry that you have experienced so much but glad that you are here to share.  I really to appreciate the info.

sweatyspice

Do you think your friend's husband the radiologist would be willing to let you sit with him while he looked at the MRI?  If you were able to see it and understand what it showed, you might get a better sense of things.  I was able to do this and it helped me a lot. 

I can't imagine anyone will do real surgery on the other breast without doing a biopsy first, and whether a MRI guided biopsy is even possible would depend on what the MRI is showing.

Are you planning on a lumpectomy or a mastectomy for the breast with confirmed DCIS?  If mastectomy, are you planning on doing reconstruction, and if so....what kind of recon?  I bring it up because if you're planning on doing a DIEP, you only get one shot at using that tissue.  You can't use your belly fat now and then go back for more (in the event you'd need to do the other side in the future). If you're thinking mastectomy, you might want to talk to some plastic surgeons to help in deciding what you want to do..

NVaggie

Yes, sweatyspice, I've already booked an appt. with two oncoplastic surgeons.  I'm waiting for BRCA test results and then, if negative, my BS will do two more biopsies to rule out other areas. She's really concerned about another area in my left breast.  If this is positive, and the fact that I have very small breasts, I would be getting the mastectomy as two lumpectomies would take 3/4.    

I'm just starting my research on the reconstruction and am taking my time absorbing it all.  I looked up the DIEP process and am interested to hear what the PS says.  Did you have a mastectomy?  If so, what type worked for you and were you happy with the results?  Are expanders used in all and is it worth the risk to save the nipple?

 Sometimes I have to step back from it all for a day or so then dive in again.  It's amazing how much you learn in a short period of time.  Thanks for the info! 

sweatyspice

My story is a long one, so for the bullet points:

I thought I'd have a mastectomy, but in the end I didn't.  I did a lot of research and Dr visits re mastecomy though, and have the best idea you can have about it and still be someone who hasn't gone through the process (or a surgeon).   

Expanders are used only if you're having implants, not for any of the tissue transfer surgeries.

Is it worth the risk to save the nipple....some surgeons say yes, some say no.  Whether it's worth it cosmetically, I guess you'd have to ask women who've done it....

DIEP is a fairly new procedure, and not that many surgeons do them.  Make sure that if the PSs you speak to pooh-pooh the idea, they're not doing so because they only do implants.  And if you do decide to have a tissue transfer (flap) surgery, make sure you have a surgeon with a lot of experience in that procedure.

Best wishes! 

NVaggie

Thanks Sweatyspice!  I went to the beach for a looooong vacation and to clear my head while waiting for results.  It was a good thing to do.  Anyhow, I'm scheduled for a left side mastectomy on the 18th of this month and have met with a PS already.  He did not recommend the flap or DIEP for me.  As I am small breasted I am hoping that the expander won't stay in or that I won't need it at all.  I'm not taking a risk for sparing the nipple and have seen great tattoos as replacements.  Just want this to be over and done with!!!