For Those with Dense Breast Tissue

louis13 · May 2011

Anniemomofthree, can i ask how big was the IDC that the MRI missed?? And how did the radiologist explain this post surgery? Rosemary

Anniemomofthree · May 2011

Hi Louis13 - I had two tumors - one that was 2mm and one that was 9mm. I never did get an explanation from the rad...but the surgeon said this was "not uncommon" and that MRI did not pick up everything. The further I get from this (happened in December) the more I think that maybe they just overlooked the DCIS and dismissed the entire area....but then, again, they were emphatic that is was only DCIS and I could wait months to have surgery. Thankfully, I did not wait!

vmudrow · May 2011

bdavis - I think you are doing the right thing - hopefully nothing is hiding in there - but you never know!

Sherryc · May 2011

I have just learned that no screening is perfect. My Dad just had a pet scan 6 weeks ago and it missed his colon cancer that had already spread to 2 lymph nodes. Another reason that I am haveing a BMX as well. The thought of just waiting for it to return, or not knowing if something else is in there that the mammo's and mri might have missed is not how I want to live.

louis13 · May 2011

thx for reply Annie, was just wondering..and yep, there are no definitives..Rosemary.

JayBird0000 · May 2011

Your info was extremly helpful and I'm going thru what you have already. I tried to make an appointment with my doctor today for a MRI after my insurance company approved it and I had an appointment set for the MRI tomorrow. She refused to sign the slip to give to the MRI department and raised her voice as to how dare I do this without her ok 1st. I told her what I've been reading & why wouldn't I do this to make sure MY BODY is ok and why wait 6 mths. I'm grabbing my xrays and results tomorrow. My insurance company covers my 2nd opinion. I did find a breast speicalist and have an appoiont for the 16th. Best of luck and I hope all of your results come back negitive. Blessing to you and your family

Sherryc · May 2011

JayBird good for you for standing up for yourself. It is our bodies and our lives. They do not belong to our Dr's. They should be there to help, support and guide us. But in the end it is always our decision

angelinac · May 2011

Towny, Thank you so much for those referrals. Hopefully I won't have to explore that at this time but in the event its great to get references. Alot of people told me in case I has any scary results Sloan Kettering was the place to go. Does anyone else agree?

Towny · May 2011

Dear Angelinac

The only thing I will say .. is when you go to Sloan or other cancer centers they must follow certian protocols and willl not go out of the box too much. If you read Jennifer Griffins Blog..she is a fox news reporter who also has Triple Neg like me and she and I had the same treatment. Sloan told me they would of never given me some of the chemo because that is not their protocol...So I was glad to go to an independent Oncologist.. But I did use them for second opinions. Also my new onc Dr. Vacirca is very proactive and does not mess around and had me in treatment with in a day of meeting with him. So that made me feel so much better. Just remember you can make appts and always cancel them if you do not need them. And also if you do need to go further into this plan a head and call asap to set up appts.... this is the hardest part of the process trying to get into new docs!!! Sloan is number 3 cancer center... I liked them but.... this is a very difficult decision.. You have to figure out where and who to see .. hopefully you will not have to deal with it.. Remember you must be proactive and jump on it and make sure everyone else is doing the same thing.. Please do not hesitate too long to find out what is going on .. it is your body and you know it best.

300beacon · May 2011

I would like to send you a private message, but I don't know how. I have (had) dense breast tissue. I had a right side masectomy and doing well. I receive a diagnostic mammogram on the left side. Should I be asking for an MRI every year? I believe my lobular carcinoma .7mm tumor was missed on my mammograms because of dense breast tissue. I am very worried ILC will start on the other side. My diagnostic mammogram one year out from diagnosis was clear. I am really confused on what I should be asking for.......I go to a Comprehensive Cancer Center in downtown Chicago so I believe I am in good hands.

angelinac · May 2011

Hi Towny, Thanks for your message I see what you mean. Do you mean I should be making an appointment with an Oncologist now even though I don't yet (at least I hope do not have at all) breast cancer? I am presuming they will ask why I am calling to make an appointment and for what, what would I say?

Anonymous · May 2011

Hello, as a "carrier" of dense breasts Frown , I'm gonna jump in the middle of the conversation, have not had a chance to read the whole thread, hope you don't mind.

300beacon - my radio-onco told me I need to get both a mammogram and an MRI on a yearly basis, so 6 months follow-up. I can try to find the source I came across if you need it to convince whoever, these are new radiological guidelines.

Also, just learned that for dense breasts, there is another test called Breast Specific Gamma Imaging (no radiation) that we need to undergo in addition to mammogram, perhaps in lieu of a MRI ? Don't know.

Don't know either if this technology is available here in Cnda but will certainly try to find out which is best the MRI or the BSGI.

Will keep you posted

Anonymous · May 2011

oops. just came upon this, it would appear that BSGI is preferable to MRI. This says there is radiation involved but insignificant and that the company is researching to lower the dose for BC patients.

http://www.medscape.com/viewarticle/725298

toni30 · May 2011

I think the issue is that sometimes insurers will not pay for the MRI - so you have to press you doctor to order the MRI in addition to the Mammogram

Char2010 · May 2011

300Beacon - I go to an NCI hospital in Chicago. My cancer never showed-up on a mammogram - dense breasts and ILC. The hospital's position is that mammograms are the standard follow-up protocol and are very stubborn about it. My oncologlist finally got an MRI approved but it took several attempts before insurance approved it. So it looks like this will be an annual "battle" :-(

Plils · May 2011

Hello beautiful ladies,

I am so confused on what to ask and what to do. I am also a newbie, I am 46, I was diagnosed in March with IDC Stage 1, Grade 3, ER/PR+, Her2/ Neg, had a lumpectomy with a SNB with 6 lymph removed 4/7, with clear margins and no nodes involvement. I just got my Oncotype results which was a 17, now I am waiting on my BRCA 1 & 2 because my mom was just diagnosed 7 months ago with IDC, her mother died of ovarian cancer and my other grandmother died of colon cancer which makes me High Risk. Depending on BRCA test will determind if I have a double mastemocy and oophorectomy since I only have the right side left but, if it comes back negative then I have no clue what to do???

One more thing for the past 3 years I have had my yearly mammogram and had to go back for more pictures and ultrasound's saying that both of my breast are heterogeneously dense, mostly in the the right breast, both demonstrate scattered fiboglandular densities and my cancer was in the left breast. I am so confused and will have my next appoint with onocology this thursday. I am scared to death on what to do, any suggestions!!!

Hugs. Pam

Sherryc · May 2011

Pam-Welcome aboard these threads are a great place for support. I am 48 my tumor was 1.6cm but I was grade 1 instead of 3 like you. I am BRCA neg. I had a lump and rads, but my follow up was going to be yearly mri and mammo alternating every 6 months because of not being able to see my tumor because of my dense breast and also lots of scar tissue from lumpectomy 14 years ago. I am now going back in to have a BMX sometime in the fall. I meet with my PS in June and will go from there. Good Luck with the decision that you will be having to make.

Plils · May 2011

Hi Sherry,

Thanks, these threads are great you said it. Can I ask why you are having the BMX and what kind of reconstruction are you having?

Sherryc · May 2011

Plils-I ended up with nerve damage after my surgery and rads. It does not happen very often, but I guess I was a lucky one (sarcastic tone). My BS feels that she can sever my nerves during the mx which will mean I will have no feeling, but that is better than the pain I have been in. Also my yearly MRI is going to cost me 2K out of pocket each year and that is a concern because at the beginning of this year my DH had to have a MRI and CT scan. I told her this was just going to be more than I could deal with every year and not to mention the roller coaster emotionlly of have scans done every 6 months for life. So we came to the conslusion that a MX would be best for me in the long run. I do not know what type of reconstruction I have having until I meet with the PS. I don't know how my radiated breast tissue is going to effect what I have done. I will have to leave that up to the PS to advise me on. I can say that I am already much happier with this decision. I just wish that I had done it to begin with and skipped the rads altogether. I had a really rough time during rads.

Plils · May 2011

Sherry,

Sounds like you have made the right discission to have the MX. Hearing that you with you would have done it to begin with is what I do not want to say that is why I feel I should just have it all out now I am 46 and do not want to got throught this again. I want to live my life and not always wonder when/if it will come back in the other breast.

Thanks for the feed back, It is so nice to talk with people that know what you are going through and are not tippy toeing around you because they have no clue what you are going through,

I am a person that likes to know everything.

Thanks again. Pam

Anonymous · May 2011

Hello Plils, i was in similar situation as you last year, after lumpectomy, had chemo and had to wait for brac results to see whether i would be doing the mx and oopho if positive or go on with rads. brac came back neg, thank god. i never considered having a mx unless pos, especially after the lumpectomy. We are faced with having to make extremely difficult decisions and i,m sure you will make the best one for yourself, listen to your heart and intuition, that is all i can say

Plils · May 2011

Hi luan,

First of all how are you doing now after all your treatment?

Couple questions, can I as your age when you were diagnoised? and do you have a family history of breast cancer. How did your body handle chemo? Did you have the Oncotype test,.

Just a few questions, lol.. It is nice to talk to someone so positive which I find that all these ladies are so cheerful to talk to, it makes it that much eaiser to handle.

Happy Mother's Day.

Lots of hugs Pam

angelinac · May 2011

Has anyone else heard of Breast Specific Gamma Imaging that someone had mentioned above? I also have very dense breasts and even after an MRI they wanted additional screening.

vmudrow · May 2011

Pam - I also have very dense breasts, I have always been called back after mammograms for more pictures, then biopsies etc. A couple of years ago clacifications showed up - B9, then Jan. 2010, at age 49 they were clustering, bioopsy - ALH (precancerous). I was tired of all the worry, tests, wondering what else would show up I chose PBMX, with tissue expanders. That was one year ago (May 6th) - felt it was the right choice for me. My mother tested negataive for BRCA, but strong family history (risk40%), now drops to less than 5%. Good luck an hugs - Valerie

Anonymous · May 2011

Yes, it reduces my rate of getting BC from aabout 37% in the next 5 years to 1-2%. It's worth it to me. Again, a very personal decision. Having had two lumpectomys does not mean I still don't have a high recurrence %.

Anonymous · May 2011

Hi Pam, i'm doing well thank you, body healing, lots of resting for me, am on Tamox which makes me tired but other than that good as new... Chemo and rads = doable. PET was clear, which was a real relief. Am in Canada though, so all these tests, surgeries, etc. are covered by our health care system, but no oncotype done here.

Was diagnosed at 53, not menopausal, there were 2 tumours, second smaller one was found on biopsy after lumpectomy. Large family history, two great grand-mothers, aunts, oncle with prostate cancer, one cousin with IDC who is BRAC2+ had double mx and oopho and was recently found with tumor (she figured the BS must have forgotten some breast tissue, don't know the details, but she was given patches which I thought was malpractice when she told me) and has had to undergo chemo and rads and now on Tamox, the poor girl.

So, unfortunately, there are no garanties. This is a dreadful disease. I never wanted to know what my odds are, all those statistics mean nothing to me. Heard too many stories where people were told they had 6 months and are still alive many more years later. Every body is different and reacts differently to the treatments.

Hugs back and Happy Mom's Day everyone

.Cartoon Character of Cute Summer Sun giving a flower

Sherryc · May 2011

Pam I also like to know everything. Just get all your information and then follow your heart and do what is right for you. I was so scared at first that I rushed into surgery because I just wanted it out of my body. I wish that I had taken it slower, gotten my info then made a decsion. Because of what I know now a few weeks would not have made a difference.

astra1215 · May 2011

HI I have been doing the watch and wait thing with my doctors for the last year and they decided it was time for an MRI to figure out what in Hades is going on, I read on the MRI paperwork that it is recommended to have the MRI during days 7-14 of your cycle, that was never brought up to me when we were scheduling the appointment, they just wanted to get me in asap. The appt will be day 16/17 of my cycle, will that be a problem/make much difference?

bdavis · May 2011

When I had an MRI in November, they just wanted me to get it done... I think the timing with my cycle was ok... In a perfect world they want it at a special time of the month, but it is ok to do it anytime, just better the other time.

astra1215 · May 2011

ok good to know, i was going to try to see if I could move it up a few days but would rather not annoy them if the results will still be accurate. thanks for responding!

For Those with Dense Breast Tissue

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