DCIS again? Don't know what to do.

jmb5

I was called back for a diagnostic mammogram, because they saw what looked like calcification on my right breast. Had it done today, and the radiologist isn't sure if it's cancer or not. He showed me my films from 2 years ago, when I was diagnosed with DCIS, and there was a definite round clump of calcification. Today's film showed a more scattered pattern, which is good, but there was a small linear spot that showed up, which could be bad. He said I can have an MRI, a biopsy, or wait 6 months and have another diagnostic to see if there is any change. I am meeting with my surgeon on Tuesday to get his opinion. I really don't know what to do. 

Anonymous

Hi jmb5

Sorry you are going thru this. Dejavu??? I can't advise you on what to do but, what is your gut telling you???? Are you the type that can wait another 6 months or will that drive you nuts?? I guess you need to listen to your inner voice here and go with what you can be most comfortable with. Know now.......or take your chances and deal later???? If I had to go thru it again as much as I would hate it and possibly question it, I know myself I would not want to wait 6 months, that would drive me beyond! I would want to know now and be able to deal with it as quickly as possible.

Listen to your head, heart and surgeon.......best wishes hun.

Anonymous

what was your treatment last time you were diagnosed with DCIS? As good as the radiologist may be, they can't be absolutely sure without a biopsy of the suspicious area.

anne 

Emaline

Is it in the same breast?  I would like to say, I would try to do 3 months scan...but knowing myself I would probably get the biopsy just to be safe.

jmb5

Two years ago, the DCIS was in the left breast, and I had a lumpectomy and radiation. I decided not to take Tamoxifen. This time, there is calcification in the right breast. At first, I thought I'd wait and do the 6 month mammogram, but that is April, and seems so far away. Now I am leaning toward biopsy, just so I'll know for sure. I know I can't let money dictate my health, but I have a very large insurance deductible. Two years ago, my surgery was in December, and rads started in February, so I had to meet the deductible twice! I'm still paying off those bills. If I wait until after the first of the year to do the biopsy, I will only have to pay one deductible. I will check with my surgeon, who I totally trust, on Tuesday, and get his opinion. If he thinks I can wait, then I'm thinking either do another diagnostic mammogram in January, or just do the biopsy. And what's so magical about waiting 6 months for a follow-up mammogram? Why not 3 months?

Emaline

I know some people who do 3 months scans, which is why I suggested it Thought it may give you some peace of mind.

I totally get the not paying the deductible twice. I am getting as much done this year as possible.  I have met my deductible and my out of pocket expenses, so at this point everything is free.  I've told my husband and if kids, if they feel like breaking any bones, now is the time to do it  

Did they give you a Birad score for the mammogram? I guess if they said it was a score of 4 or 5, I would definitely be getting the biopsy.  If it was a 3 or so, I would see if I could come back in 3 months.

jmb5

Shoot! I forgot to ask about the Birad score. My report is on my on-line chart, and after all the radiologist's notes, it says "CATEGORY 3". I bet that's the Birad score. You think?

jmb5

By the way, Emaline, I live in NE Ohio too.

Emaline

I think so but I don't know for sure. I would call them in the morning.  I would still definitely talk with your surgeon about it. This way then you have the best of the information and can make an informed decision.  I wish you the best B9 thoughts!!  Please keep us updated!

Emaline

Hey neighbor   I have an appointment too next week but mine is with my plastic surgeon, so not quite the same. 

Hindsfeet

jmb5

I don't want to scare you, but, at my second dx of dcis, the radiologist said the linear line usually is a sign of maglicancy. I put a thread on the dcis on califications. Look at it if you got a chance..the link I put up there explains what they are looking for when suspecious califications are found.

I wouldn't wait 6 months. I would have it biopsy. Don't take chances.

jmb5

Yes, it's the comment he made about the linear line that has me worried, although there were 2 films to look at, and he could only see the line on 1 of the films. He said he didn't know why. In his report, he doesn't mention the linear line, but calls it a "loose grouping of microcalcifications in the retroareolar right breast".

3monstmama

Big hugs.  I have my annual/6months in another week.  A year ago, I went through a scare where they thought that GoodBoobie had DCIS.  I was ticked!!!!  I mean, honestly, did GoodBoobie feel neglected while BadBoobie had 2 surgeries and zaps and all those doctors feeling and poking and peeking?  Really!  Anyrate, the spot on TheBoobieFormerlyKnownAsGood was so small they couldn't do it as a stereotactic biopsy so I ended up getting a surgical biopsy.  In the end, it was just some calcs. 

Which does not mean that I now have a GoodBoobie and a BadBoobie.  GoodBoobie has lost that name forever.

Breathe deep.  here's hoping your outcome is as dull as mine.  But if it isn't, there is something to be said about them finding it so very early.

Many hugs.

momzr

My story is somewhat similar to yours although my DCIS was in left breast.  That was three years ago (DCIS diagnosis) and then this summer another 'scare' with more microcalcifications in left breast (completely benign conditions associated this time).  The ones I had removed this past summer spanned a distance of about 8-9 mm, so a pretty small area, but I am pretty small in the bustline anyhow (not even an A cup).  The nurse practitioner who I met with as well also shared with me there are three 'classifications' of microcalc's.  Benign (of course nothing to worry about), Indeterminite (which is what mine this past summer were classified), and Pleomorphic (more ofen times a definite problem).  Three years ago the ones I had removed which did turn out to be 1.6 mm of DCIS were classified as 'mildly pleomorphic' in appearance and also listed as a 'cluster' which on mamm films did look somewhat circular and close together.  This years description on radiologist report who read mammogram called them a 'grouping of indeterminite calcifications' and they looked a bit more 'scattered' to me and not as close together as the DCIS diagnosis had been and  they turned out to be nothing. I will just go back to regular mammogram screenings again next summer as directed by Breast Surgeon.  Do you have your mammogram report from the radiologist and does it mention pleomorphic or indeterminate or anything like that?

jmb5

3monstmama, you make me laugh. I guess my good boobie was jealous and wanted some calcs of her own.  Hoping her's aren't the bad kind.

Thanks, momzr. I do have my mammogram report, but there is no mention of  pleomorphic or indeterminate. My calcs are more scattered, which makes me feel better, because 2 years ago there was a definite round cluster. The part that worries me is that very small line that the radiologist noticed in one of the films, but not the other. He said he didn't know why it wasn't showing in both, and then kind of dismissed it. My surgeon, who I meet with Tuesday, is pretty conservative, so I have a feeling he'll just want to biopsy it.

mgm1953

jmb-

I got  called back for a second set of mamms in Aug. One angle showed a row of microcalcs. Radiologist said I had an 80% chance it was nothing, but I needed a core biopsy to be sure. I did that, and was Dx w/ DCIS intermed/hi grade. 

 After my first Ca in -05 I thought I'd conquered it. I didn't do chemo, which would have only given me 1-2%. Now, after recurrence,  I don't feel like taking chances- going for the Mx. But I respect everyone's decisions!!!

xo,

mgm 

jmb5

mgm -

So sorry about your dx. Was it in the same breast? Mine is opposite. Did that row of microcals show up on both angles or just one? There were two different pictures and it only showed up on one. The first thing the radiologist said, was that there was a linear spot. I said, "That's not good." and he said, "No it's not." He then showed me the scattered cals and said he didn't think it was DCIS. Because the linear spot only showed up on one angle, he said he wasn't sure what it was, maybe it was something on the film. That just didn't sit well with me. He didn't mention it in the report, and when my oncologist called to check up on me a couple days later, I told him about the linear spot, and he was surprised and seemed concerned. I just have a bad feeling about it.

bojo

jmb5

I was  40 years old  first time left breast 2 lumpectomies and 37 rad treatments. I am 46 now, this time DCIS right breast high grade with necrosis. It also showed a second area with  atypical ductal hyperplasia with microcalcifications. I have an appoitnment 10/19 to discuss my options.  I am freaking out that i may not have a choice and will need a  MX.   I had always said if it came back in my good boob i would chop it off, but now that it's here i am freaking out.  I don't know what to do.

jmb5

I met with my surgeon this morning. He wants to do a biopsy just to be sure. I asked if I could wait until the first of January because of insurance and he said he was okay with that. He did not want me to wait 6 months though like the radiologist said. I asked him what the statistics are that scattered calcs are DCIS. He said about 20%, but higher for me after already having it. So, looks like another stereotactic biopsy.

bojo

I go see my BS tomorrow and she will tell me what my options are for surgery.  Good Luck on the waiting part.  Doesn't it really stink that we have to work around our insurance, like we are not going through enough already!

bojo

mgm

sounds like you are in the same boat as me. First time DCIS 2005 Left Breast.  Second DCIS High Grade right breast 2011. I am meeting with my BS to discuss my options for the second go around.  Are you have recconstruction at the same time as you MX?  If yes have you decided what kind?  Saline, Silicone, DIEP?

3monstmama

jmb5

I'm glad I made you laugh.  Laughing gets us through this crap, doesn't it?

I waited nearly forever to come to a decision as to how to approach my DCIS.  The oncologist and surgeon both said not to stress.  The good part is that with DCIS, you have time to research and think your decisions through.

Devil's Advocate on the waiting for the biopsy---is the issue that your insurance won't cover it?  Because if there is the least chance you might have to do more treatment, you might want to find out when you can still sign up for a medical savings plan and what have you.  Just a thought.

With my original diagnosis, I had set money aside anticipating that my middle monster would need braces.  We ended up using the money on my BadBoobie.  Now here we are again at enrollment time.  My mammogram is set for this Friday.  If there is anything wrong, I will hold the line on anything major until the new insurance rounds but I will have time to arrange things with the medical savings plan to help on the tax end.

jmb5

I'm waiting until Jan. because I have a yearly $2500 deductible which I'm not even close to right now. Two years ago, when I first had DCIS, I had lumpectomy in Dec. and rads started in Feb. I had to pay the deductible twice!! I don't want to have to do that again, and since all my doctors are okay waiting a couple months, I am too. Since the calcs are scattered, it seems less urgent. The good thing if I meet the deductible in Jan. is that my healthcare for the rest of the year will be paid 100%. We do have a health debit. We already put $400 a month into it. Half of that pays for braces for 2 of my kids. Ugh!

3monstmama

What is it with the braces?  Honestly I was encouraging Middle Monster to be a brain surgeon but now I'm thinking orthodontist is the way to insure me a fine retirement. . . .

Double deductible stinks.  I don't have a wretched deductible so the other consideration worked better for me. 

hmm, just looked at your signature:  I think we were on the same timeline only you were diagnoised a bit later than I was.  I can proudly say that I was diagnoised at the exact same time they issued the press release saying self exams and mammograms for women under 50 were pointless.    I delayed my lumpectomys to February and started zaps in March.

cheryl1946

jmb5

It is sad that so many decisions rest on insurance coverage.

I've been disabled since age 49 from a disease called transverse myelitis and was on Social Security disability and long term disability until I turned 65 this past June.I've been in a  Medicare HMO since 1995. Never realized how good that insurance is until now.

My insurance has been great about everything-even the second opinions at Dana Farber in Boston. Needed pre-approval,but got it without a problem.

Since middle of April,I've had 2 mammos,3 MRI's,one stereotactic biopsy,2 core needle biopsies,PET/cat scan,and a cat scan guided biopsy of my shoulder. I have 1 DCIS and 2 IDC's with mets to the shoulder,chest wall,?nodes and small area in sternum.

All I paid was total of $350 in co-pays,and that was for the MRI's and scans. Total bills well over $20,000. I was told by Dana Farber if for some reason my insurance did not pay,I would never see a bill from them.

jmb5

3monstmama -

Yes, we were going through it at the same time 2 years ago, and I remember the big announcement that mammograms weren't needed at 40 right when I was dignosed at 40! I friend of mine is 39 and was just diagnosed last week with IDC. I think they should start baseline mams at 30.

cheryl-

So sorry you are going through this. Great big hugs to you as you go through treatment. All these stories on here are the reason I am so involved in Relay for Life. I hope I can tell my grandchildren someday that I helped to find the cure!!

jmb5

Well, I am second guessing my decision to wait until January for the biopsy. I was waiting because of the insurance deductible, but I am feeling anxiety and just wish I knew now. I want to get this behind me before the holidays. My normally very supportive husband wants me to wait, and it's hurtful. Because the doctors think it's unlikely that it's cancer, he isn't concerned. Well, I am!!

Calico1

You may want to check with your individual insurer but some have the policy that if you fulfill your deductible in the last quarter of the year, that it counts for the next calendar year... Never knew that until this whole roller coaster began in may... Good luck to you. We have super high oop costs and I am dreading all the costs associated with it.

iLUV2knit

For what it is worth...

I did the waiting game already. Had a mamm showing calcs back in January 2011.  They recommended waiting 6 months to watch for changes. 

Long story short ....July was the follow up, August was the stereotactic biopsy, and also MRI of left breast.  I am two weeks out from having a BMX-10/13/11.  I wish I hadn't waited the 6 extra months.  It seemed pretty silly looking back now 'waiting'. 

Everyone is different and has various opinions but I wish I could have addressed this all alot sooner.  Plus my insurance would have  been all paid up for all procedures.  As it is now, I will have more reconstruction next year and have to pay my deducible and copays all again. 

CTMOM1234

Wishing you the very best!!  The Birad 3 is a good sign. I would probably schedule the stereo. for Jan.1 AM (or Jan.2 as top doctors won't work on holidays) just to save the deductible, but then again, the waiting is soooo stressful, so I'd be going back and forth with that, too. Ugh.

I'm another in the club diagnosed with dcis in the left @ ~40 years old at nearly the same time that the stupid rec. about no need to do mammograms for those under 50 came out; it was only my 2nd mammo that caught the dcis, probably was there with the first one but I have dense breasts. I can remember feeling as though my whole world was spinning around me when they reported that on the news, but also thankful that I did get the mammo. because at least it was caught early. Had that $%$^$ recommendation come out a few months earlier and I'd likely have looked at it as permission to forego the squishing for years . . . and considering my dcis also had a trace of idc in it, well, I can't even type what'd that would have meant for me had I waited until 50 or even 45.

(edited: sorry not sure why my post has different fonts in) 

CTMOM1234

Wishing you the very best!!  The Birad 3 is a good sign. I would probably schedule the stereo. for Jan.1 AM (or Jan.2 as top doctors won't work on holidays) just to save the deductible, but then again, the waiting is soooo stressful, so I'd be going back and forth with that, too. Ugh.

I'm another in the club diagnosed with dcis in the left @ ~40 years old at nearly the same time that the stupid rec. about no need to do mammograms for those under 50 came out; it was only my 2nd mammo that caught the dcis, probably was there with the first one but I have dense breasts. I can remember feeling as though my whole world was spinning around me when they reported that on the news, but also thankful that I did get the mammo. because at least it was caught early. Had that $%$^$ recommendation come out a few months earlier and I'd likely have looked at it as permission to forego the squishing for years . . . and considering my dcis also had a trace of idc in it, well, I can't even type what'd that would have meant for me had I waited until 50 or even 45.

(edited: sorry not sure why my post has different fonts in)