Help and advice please.( sorry long)

ibot

Hello.  I haven't posted in a long time, just lurking. April 09 DX  DCIS, multicentric, grade 3 with necrosis,tri neg. Had uni mast and SNB. Nodes clear. Margins were .04  No further treatment, GS said "surgical cure" No f/u except screening mammos annually. Ok , now it gets weird. GS said he did mod radical, path says simple. Had a lot of confusion because surgery report said invasive found in biopsy  path doesn't. Fast forward Oct this year, two swellings on mast side about halfway bettween scar and collarbone, lots of new small lumps around scar. waited till mid Nov to see if anything changed. Found large area in "good" side that is firm and uneven, I can feel what I assume are Ln running from in front of my armpit to breast and into breast itself. They are not huge, feel like large beans. Went to NP at low cost clinic,she sent me for mammo on good side and u/s on mast side, then back to original GS. Mammo and u/s came back clear. Saw GS he felt the area on breast said "it's not cancer I can tell by feel.  didn't even feel the nodes, said come back in six months. He thought the swelling on mast side was from skin separating from chest wall. I pushed for MRI  have appt next week. I don't have insurance, applied for hospital program, I know these bills are on me. Did I do the right thing pushing for MRI? Any thoughts on all this would be appreciated.I just feel like someone dropped the ball the first time around. Thank you all, these boards have been a great help and inspiration.

Frankie_

I have learned that I have to be my own advocate. That meaning always go with that inner gut feeling and report anything that is unusual for you. Push and continue to push ALWAYS!!! You will have peace of mind and should anything ever be found you will be on top of things early to be able to choose from treatment options. You have gone thru so much already and it's sometimes hard to distinguish what is normal (health issues) before and after a bc dx.

Frankie

ibot

I guess what I am asking is, does this sound like i need to worry enough to get the MRI? How much does the MRi show? 

NatureGrrl

A mammogram only shows what tissue can be squeezed into the x-ray machine and therefore is more limited. An MRI should show your breast tissue (deeper than a mammogram can), in addition to lymph nodes/armpit areas.  So yes, it should show more detail and more area.  No machine can detect everything but an MRI should give you a much better picture.

As Frankie said, we have to be our own advocates.  And I do hear stories about women who were told "I know it's not BC" and were not checked again for months/a year and of course had advanced BC by then.  (I've also heard of drs. telling patients they "know" the patient has BC and then they don't.  Way to scare someone.  Sometimes drs. are idiots.)  So absolutely, I believe you're doing what's best for you and that it's worth it.  The doctor may well be right and all is fine; in fact, I hope he is -- but if he's not, you want to know, and sooner rather than later. Doing the MRI will give you peace of mind.  Go for it.  Best of luck and a warm hug.

MJLToday

I would push for the MRI, even without insurance.

 Another point -- the GS should be the expert on what kind of mastectomy you had, whether it was simple or modified radical.  And, the pathology report should be the expert on what type/stage of cancer you had -- stage 0 DCIS or stage 1 invasive.  There should be two path reports, one from your biopsy, one from your mastectomy.  If EITHER says invasion, or microinvasion, most consider that invasive stage 1 cancer. 

Frankie_

tobikesyes-I can't tell you what to do in regards to getting an mri or not. That can only be your decision alone. Sometimes you can negotiate bills at the hospital (after the procedure) they would rather get some money than not. I would suggest try this route. Having said that, I just want to share a bit about my story. I was dx bc Sept/09 (my story is in my profile). Anyway, I had a brain mri (which I had to really push for-not a standard of practise) in Dec/09 at initial dx. It came back clean yay!!! BUT 8 months later I had a twitch in my left arm 2x-and had this gut feeling (something wasn't right) reported it immediately that day and was seen by my onc. I pushed for a brain mri. He told me that he didn't think it was necessary. I pushed anyway. Had the mri 5 days later and found out I had a brain met. I also have learned (hope this doesn't come across negative) but a test of any kind beit CT Scan, PET, MRI, etc. is only good as the day it's done. This is why I wrote earlier be your own advocate. At the time that I found my lump my breast surgeon told me that he didn't think that my lump was cancer-and it was.

ibot

Thank you for your replies.  I am just worried and don't want to make too much out of nothing.

ravdeb

I believe in getting whatever scans you can. It helps give you peace of mind. It is never making too much out of nothing because we are talking about cancer.

I manage to push for MRI yearly and hopefully next year as well. They do find things on the MRI that they may not see in other scans and most of it is benign but hey...it's good to know.

 Good luck.

Cocococo103036

I agree you MUST follow up all your concerns as thoroughly as you can. I had Drs reluctant to give me a referral for an MRI [in Australia the only subsidized MRI's for breasts is if you are under 50 and have tested positive for BRCA 1 or 2] even though I was willing to pay the cost [$690 without subsidy, $90 with subsidy]. My MRI came back clear of cancer cells. Someone could say I wasted my money. I don't believe so and I intend to have MRI's every 6 months based on the theory that the biggest indicator of future breast cancer risk is if I have already had BC + MRI's are much better at detecting invasive BC earlier than any other imaging technology and my theory is the earlier a recurrence is detected, the better my chances of surviving. Some people say MRI's are too sensitive a diagnostic tool, with mmore false positives, but I would rather deal with a false positive from an over sensitive MRI versus a false negative from a undersensitive machine. Once my seroma is dealt with, I will add mammograms to six monthly regime was my cancer was tubular and mammos are apparently better at detecting their architecture. This is despite the fact mammos let me down by failing to detect my BC for 12 years so they have a proven high failure rate with me. I will also have ultrasounds of breast and axilla. Do not feel ashamed if you want more than the Dr wants - shop around a find someone who thinks more proactively. 

lookingforward4more

Definately get that mri!!! I had a breast surgeon tell me that my lump was nothing four four years and it was cancer. Had I had the MRI I might have been able to skip chemo, mastectomy, reconstruction. My new rule...don't trust doctors who act God like. Any one who says he just "knows" its not cancer thinks he is GOD!

bevin

I agree with everyone here.  Have the MRI, its better to find out than to worry.  My uncle is a surgeon and even he told me if doctors are not willing to order scans, tell them what they want to hear. i.e. tell them you have symptoms, they will have to order a scan to protect themselves and you. Coverage for the cost,depents on where you live. My insurance is good and I find most things are covered.  If you dont have insurance or limited coverage, have the scan and then call their billing office. They often have programs where they can waive part of the fee based on sliding scales of income, etc.

Good luck, I hope its nothing.  BTW one lats thing.  The doctor works for you.  If you are not getting the care you need or feel like you are not, find someone new!  Just remember - he works for you - it doesnt matter that the doc is the one in the white coat.!!

3daywalker

First of all mamo's only pick up 40% MRI's are the best at detecting, you def need to persue this.

ibot

Hi everyone,  here is an update and a bit of a rant.  Had the MRI ( not bad at all) Picked up all the reports and the disk. ok here comes the rant. mammo report says all clear, no calcs, etc. report on disk says calc cluster found. Mri report, foci of nodular enhancement seen, which means if I am correct, it's to small to tell what it is so we are going to guess. Now the kicker had the U/s on left mx side, report reads....u/s on right breast . right breast unremarkable.  WTH!!!!!!  did anyone even look at it? So back to the hospital to find out what is going on. "we will look into it" yadda yadda. A month later haven't heard anything so go back again, NOBODY knows anything about it. Explain again no u/s on right. Girl comes back with a different report,"here you go"  IT'S STILL WRONG.says the same thing. Finally she says tech isn't here we will look into it. GRRRRRR.  So here I am with Radiologists that don't know what they're doing ,don't care, or both,a surgeon who can tell if it's cancer by feel, no money, no insurance, no options. AAAAAAAARGH. just want to scream. All the symptoms haven't changed,my gut says something is wrong,but I guess I just wait for it to get worse. Sorry guys about the vent, just so frustrated.  Thanx for listening,you all are a great help.

lewima

YES YOU DID THE RIGHT THING.!!! the financial aspects can be worked out later.  Don't gamble with your life.  Congrats to being stubborn, pigheaded and worried!