please stop minimizing my diagnosis

Melissa1518,

I just spoke with a nurse navigator at the center I will be having my mammo and visit with the BS.  She basically said I had done all the footwork and compiled a lot of information and made her job much easier.  She said the best thing to do was see the doctor on Friday and discuss everything with her.  I asked about MRI's and she said the only thing she would tell me is to be prepared to come back for more biopsy/testing if I had one done...be ready to go the extra mile because more than 50% that have them have to have further testing.  I don't know why she would think I wouldn't go the extra mile...that's why I'm coming in in the first place.

I'm still very concerned that ADH has been sitting there for all those years...but what can be done now???  She said if I had a good surgeon back then he may have taken it all out at that time.  One can only hope.  I will be glad when Friday morning gets here.

Thanks again for the suggestions.

Kittycat - I got the news over the phone too! Are these people nuts- how do the know we won't do something crazy??? They called and asked (a PA) if I made "that BS appointment when you were referred to have the biopsy?" I am a nurse if that is ALL they wanted they would have had some receptionist call me to confirm the information- the PA stalled- it was like I had thrown cold water on her, she stammered and said oh I will have Dr V call you- never happened ! 5 hours later and several calls from me I finally got the PA back on the phone and said "read it to me several times or FAX it to me. Then I was on the Merrygoround- only not so merry.

younggrandmother- yes we do their work because we are motivated!!! Yes I had more biopsies and MRIs and finally said enough! The insurance company won't pay for lefty to come off- so now I have that fight! I will take the fight on and if I lose I will pay $20.00 a month-

Have a physically and emotionally painless day ladies! Good luck and highest regards

I have just started going back to work out at the gym and have not gone to PT.  Are there any exercises that somebody might reccomend to me that I can do at my gym.  My gym is a family membership and each time I go to PT I have to have a co-pay which is why I would rather do this at my gym.  I am 5 weeks out from bilateral mx and had immediate one step reconstruction with the implants.  I feel pretty good just wonder what I should do for exercises for my arms, shoulders, chest (if at all)

THX

ALLY

What's with these doctors and telling people via phone?  Dumb!  I could use some info on exercising.  I'm in serious need of losing 10-15 lbs! 

It was so hard to tell my hubby- I just didn't  want to hurt him,  he has been great- here I sit after 29+ years of marriage and suddenly no boobies and total support, TOTAL! He is my rock!

My GYN still insists I do not have cancer.  Other than that, I love the guy AND he's the dep't head.

As to CRAPASS ways to get the bad news:

I schedule the biopsy.

I get a letter in the mail reminding me to schedule a biopsy.  This pisses me off.

I have the biopsy (which was hell).

I am supposed to call my BSs nurse 4-5 business days afterwards to get the results.

I figure I'll wait the 5 days, because I have a bad feeling about this (even though I've been given the "it's probably nothing" speech) because a) I'm happy to keep the denial phase going one more day and b) I really didn't like the idea of getting my panties in a twist, making the big call, and being told the results weren't in yet and I should call back the following day.

The night of the 4th day, I come home from work to find another copy of the "schedule your biopsy!" letter in my mailbox.  Now, not only am I pissed at the incompetence, but I'm thinking it's a bad omen.

I check my home answering machine.  It's a Thursday night, and there's a recorded message from the Breast Imaging Department calling to confirm my appointment for Monday at 8:30am.

I do not have any such appointment.

I think maybe they screwed up when they made the biopsy appointment, put me in two slots and forgot to remove me from the second one.....  I figure I'll call in the morning and sort it out.  But that sick feeling in my stomach is increasing. 

I call Imaging first thing in the morning, and I'm told "Oh, your doctor called yesterday to schedule it.  It's for an MRI."   And then I knew.

Called my BSs office, nurse started off with something snide like "Were you ever planning on calling me for your results?"  

I am no longer with that surgeon.

Oh yeah, she's the chief of her dep't, too......maybe Chief isn't all it's cracked up to be.

HA!  Actually, I saw the GYN two days ago.  He told me about his mother in law, who was diagnosed with DCIS in her 70s.  She had a mast & implant recon, when implants were new.  The implant failed (he said something about elderly women having a lot more difficulty/higher failure rate, which they didn't know about at the time.  I hadn't heard that, and it sucks!  So if you're not diagnosed till you're older you're SOL when it comes to recon????  That's CRAP!!!!   But I digress.....) 

So, anyway, the poor woman has diagnosis, mast, implant, implant fail, implant removal.  She's so done with this it's not even funny.  Went without prosthesis, except stuffed socks in her bathing suit when she went to the beach.  NEVER EVER saw a Doctor again, for anything, ever.  (Even though her son in law was a Dr.)

Can I just say, I LOVE THAT WOMAN. 

Well, I saw the BS yesterday...three hours, a mammogram and US later the decision was made to have surgery.  Excisional removal of some areas of concern.  Mammo and US were inconclusive.  "We can watch for 6 months or get it out and give you peace of mind".  Well, you see what my decision is.  They will call Monday to schedule the surgery.  I asked about MRI but she said it could come back inconclusive as well and it is an expensive test to do when we might possibly go ahead with surgery anyway.  She said surgery is the most accurate way to diagnose.  I have read on here that so many women found DCIS through MRI...is the excisional biopsy better?  I don't know how much tissue will be removed at this point but I guess it doesn't really matter.  I just need to know.  I'm guessing the excisional bx is better because of the pathology.  Any input would be greatly appreciated.

I gave her a copy of the original pathology report from way back when and her disposition changed completely because of the dx of ADH.  She ran me through the computer that came back with a lifetime risk of invasive cancer at 25.6%.  Then as I was leaving she told me to think about taking tamoxifin to reduce the risk...just think about it.  I've heard horror stories about the drug.  I think I will wait out the excisional bx and put the decision of tamox on the back burner until I know for sure.

What, if any, are your thoughts? 

Grandmaof2-  Tamoxifen is not so bad. You are right to wait till after the surgery; they will test your tumor and then they can tell you more accurately whether Tamox will help you. There is a thread right on this site called Bottle o' Tamoxifen to see what it's like. Or just use the search button, there is a ton of information (lots of us are on Tamoxifen) Please consider using it or having radiation for your DCIS to keep it from coming back.

Melissa- there is a lot of information if you check the forum index. Also breastfree.org has helpful pictures.

Hope this helps

Younggrandmom - 

My two cents as someone who had an area of DCIS discovered thru MRI (and I'm not sure if I'm even really understanding your situation):

Back in 1993, I had an excisional biopsy of what turned out to be a benign fibroadenoma, so I know what an excisional biopsy is.

Recently, I had a mammo with suspicious calcifications, long story short, I had a mammo-guided stereotactic core needle biopsy which confirmed DCIS.

Then I ran into the controversy over whether or not to have a pre-surgical MRI to see if there was anything else.

Another long story short, I did have an MRI and it did find something else.  This resulted in an MRI guided biopsy, which confirmed more DCIS.  This area does not have necrosis or calcs, which is why it didn't show on mammogram. 

Neither of the DCIS areas were visible on ultrasound, and I had what seemed like tons of ultrasounds.  Only the area of DCIS that had calcs showed on mammo.  The other crap was visible only on MRI.  (Both areas of DCIS were clearly visible on MRI, I sat with the radiologist and looked at the scan afterwards, which is unusual and very nice of them to let me do.)  

For all I know, there's still more crap in there that science can't yet detect through imaging - but I expect it's at a really early stage so I'm not stressing about it all that much.

The MRI is sensitive.  It's more often criticized for picking up false positives than missing things - but when you get the speech about having a biopsy after a suspicious mammogram, you also get the speech about how 80% of the time it's benign....so I don't see why MRI gets such a bad reputation except that it's expensive.  I think the false positive rate for MRI is something like 65%, but I haven't checked that in a while, so I might be wrong.  To cut down on the false positives, MRIs should be done during a certain part of your menstrual cycle (assuming you're premenopausal).

Now, assuming the MRI showed something, you'd STILL need it biopsied.  No matter what type of imaging detection finds an area of suspicion, a tissue sample is needed to confirm that suspicion or rule it out.

For something that is visible only on MRI, it means a biopsy done under MRI guidance.  You lie in the tube on your stomach, your breasts dangle through holes, they have a mammo-like compression thingy below you to keep your breast from moving around, they find the suspicious area through MRI imaging, then they mark the location of the suspicious area and go in with a big fat needle, remove tissue samples, and send them to pathology.

You slide in and out of the tube several times to get all this done, it takes a while and there are several stages:  slide in and do the MRI scan to locate the area, slide out to figure out where the area showing on the scan is actually located on your breast, I think they slide you back in to make sure they're in the right place, they slide you back out to do the actual biopsy (removing the tissue samples), slide you back in to double check....something like that.  I don't really remember how many times I went in and out, but there is a video (or two) online by the manufacturers of the needle used for biopsy which goes through and explains the whole process.   

Not all facilities with MRIs are set up to do breast MRIs, and not all facilities that can do breast MRIs can do MRI guided biopsies (which is kinda dumb). 

Maybe your hospital can't do the procedure and doesn't want to admit it.  I don't know, but it's possible.

In general, image-guided biopsies (ultrasound, mammo and MRI) gained popularity because they were CHEAPER than excisional biopsies, so that's why I'm a bit skeptical of what you were told.  And patients like them because they're less invasive.

For me, the MRI biopsy was a lot less painful than the mammo biopsy - setting me up in position for the mammo biopsy was NOT fun, the MRI wasn't a big deal at all - though the needle they used was larger and I had a lot more bleeding / it took longer to heal than from the mammo one.  

The excisional biopsy I had in 1993 didn't hurt (the procedure itself) but there was definitely a much bigger scar and longer healing process.  That was more like a lumpectomy then the image guided biopsies were.  

If it were me, I'd probably want to go the MRI route, see if it showed anything, do the less-invasive biopsy if necessary, see what's what on pathology.  I hate surgery and try to avoid it at (almost) all costs.

If the MRI showed something suspicious, and it was confirmed through MRI biopsy, you'd STILL be having an excisional biopsy (or lumpectomy, if you want to call it that) afterwards.  So, you might be saving yourself about a month of anxiety and two procedures. Since you know you've had ADH in there for a long time, I can totally understand just having it excised.  There's something to be said for just getting it out. 

In any case, it's good that you're taking care of this and will have your answers and (hopefully) some peace of mind soon!

I don't know if my long winded story helps any, but I tried.

Best,

Fran

wow...you all are awesome.  Just ask the questions and you are there with advise...it is great!  I went to a very good, state of the art breast center...my bs was just very hesitant about the MRI first...she seemed to think it was like the cart before the horse...not really what I've read on here but a few have had the MRI after their bx.  She is doing excisional because what we are feeling is not "a lump"...it is kind of in a couple of different places near the original ADH.

I will be sure and check out the thread on tamoxifin...just for information right now.  I'm not a normally very patient person so I'm hoping the surgery won't take too long...she wasn't sure she could get it scheduled before Thanksgiving...I'm hoping she can.  To be honest...right now life is not so great but I will get through.

 I appreciate all the input...I'll keep checking back to see if you all have any more info for me.  You will never know how much your information helps the waiting.

Hello,

I received the call today...excisional bx scheduled for December 4...the good news is I'm the first one that morning..have to be there at 6 a.m.  I normally am a morning person but this means I need to wake up at 4 a.m.  I guess I will join the waiting game. 

Rant aways sister!!  Personally I think that when you have DCIS, or Stage 1,2,3,or 4, it;s ALL breast cancer and the fact about breast cancer is there is NO CURE  We are all benefiting from the newer and better treatments, but those little bugger cells are just waiting to grow and divide.  You DCIS girls, please don;t allow anybody to minimize your diagnosis. Breast Cancer is Cancer and NO your no Lucky to have this cancer, and NO your cancer is not the GOOD CANCER.  Your cancer can come back with a vengeance. So please be your own advoctes.  Know your pathology reports, and if you feel you want to be more aggressive with your treatments than tell your doc you want an onc who will treat you aggressively.  The bottom line is we want lots of years with our families, so don;t take no SH@t from anyone.

I hear you all. It is like being caught in limbo- Stage 0- not "really cancer" yet they slice and dice and nuc your breast, but it's not really cancer. Almost "bitch"slapped one resident who said that to me. I have the same fears for recurrence as our stage 1,2 and 3 sisters. While I am grateful for being caught early, I am not grateful for having ca in the first place. I have gone from being quite strong to being afraid of my own shadow, I do not like who I have become. I try to stay positive and feel I have reprioritized my life, but my old life wasn't too shabby either. I feel more sorry for my Dh and DS, they don't deserve my irrational fears and emotional instabilities.