Brain MRI - Should I demand one??

[linn65]

First doctor and first path: Tumor, Grade 2, Her2+++, PR-, ER 30% - that was based on a Core biopsy results. Double masectomy scheduled the following week.

Second opinion doctor - based on the results about. He wanted Chemo then Masectomy.

I had the weekend to decide which path (no pund intended - LOL) to take.

I went with 2nd opinion and family was split. Some said get my breasts off immediately, and others said do chemo and be the human lab to see if it kills the cancer.

I went with TCH chemo first, but before I did these are the scans I received.

Breast MRI, Bone scan, and Cat Scan and everything came back clear accept the Breast MRI of course which first doctor hadn't done and second doctor said that is standard procedure.

After I had the masectomy the path report changed; Grade 3, ER +73% (big difference), PR 2% positive and HER+++, 6 of 8 lymph nodes with extracapsalur present and he said .5 margins meaning clear margins in masectomy?? I think. He said the Chemo was good response because tumors didn't grow and based on tests prior had shrunk some maybe.

So first off with all the scans I had no idea to even think of a Brain MRI until this board because I didn't know that herceptin didn't pass the blood brain barrier.

Now, I wonder if I should PUSH FOR BRAIN MRI because I haven't done one??

They scan everything else prior?? I am not to have any scans now until I would have symptoms of spread which hopefully that won't happen. But they never scanned my brain.

Also, based on my path reports do others on this board think I had good results??? On chemo vs. Masectomy first???

[tricia keegan]

I can't answer all your queries but I'm sure others will, I have never had a brain mri either although my Onc would do one if I had symptoms or pain, the only extra I had that you didn't mention was a heart Mugga scan to ensure my heart was okay for chemo. I really don't think they do brain scans as standard for early stage bc.
My friend had chemo before surgery too but only to enable her to have a lumpectomy rather than a mast and she had a lot of shrinkage too, sending good wishes to you and hope any other treatments go well.

['lizbeth]

Linn,

I wouldn't recommend the brain MRI unless you are experiencing symptoms.

I'm having a breast MRI in a couple days, but only because of symptoms that were similar to the Pagets in the other breast. I almost changed my mind yesterday - because of the chance of a false positive and a biopsy.

The detail on a MRI is so much greater than a mammogram. If you medical team finds anything they are obligated to do a biopsy. Are you ready to have a brain biopsy over a false positive MRI results?

You can't second guess your treatment plan now. You made a decision on the best information and advice available. Turn your focus from the past to the future. Exercise, fresh veggies and fruits, meditation, stress reduction and your Arimidex.

Lani's post said to prevent brain mets eat broccoli and brussell sprouts.

If you start to have headaches, poor balance, blurry vision. Don't wait - run to your oncologist and demand a brain MRI. Otherwise, don't open Pandora's box.

[linn65]

Tricia sorry I forgot about the Muga scan, and I had one of those. Then I have had them every 3 months for the year, so I could continue the Herceptin and anything below 50% I couldn't but mine were all above that.

And does everyone call stage 111 early stage breast cancer?? I noticed people with IV do that.

Lizabth, I do like brocolli but uhm those brussel sprouts not so much!! :) I take tamoxifan now, and I sure hope that isn't the culprit for my side effects that I have, and I am blaming it all on the Herceptin. Sunday night my feet, knees, hands, and hips all ached, so I tossed and turned all night. Then Monday was the first time I haven't made it too work after Herceptin treatment, and I slept until Noon, woke up, and fell back asleep at 1:30 and woke up at 5:00 and then had a weird, itchy rash on my right arm!! I thought CRAP I am almost 48 (in sept), and I feel like I am 90 somedays. It feels like I have arthritis sometimes. Anyway, the pain is much better today, so hopefully it will stay that way until next treatment on July 30th.

[linn65]

I do wonder could the tumor in 3 months go from Grade 2 to Grade 3?? And could it go from ER 30% to ER 73%??

The only reason I am for sure happy that I did Chemo first is because it sucked so got that over with first!! LOL.

I am ready for October 24th and have my first out of three reconstructive surgeries done.

[LeahM]

Linn,
I had a very hard time accepting the "no scan" thing too. I even moaned and groaned about it here on this board...I was told the same things you are being told...don't go looking for trouble.

I did have a brain scan during chemo but that was because I woke up one day with blurry vision....my onc thought it was the chemo but scanned anyway. Scan was fine, chemo ended, blurry vision ended...

In Feb I had shortness of breath so off to another scan. Something was seen but it was small so rescan in 3 months. I did that and guess what! What they originally saw was GONE but now they see something NEW...good grief...scan again in 3 months. So I will (sept) but then I am closing this can of worms I opened....

Here is how I look at things now...and my onc (who offered me a PET scan after I finished Vit. H, which I said "no" too ) agrees...in the future...if something doesn't feel right inside me, we will rule out cancer first.

I know it scary...I feel like that guy who walked over the Grand Canyon without a safety net....and I did agree to tumor markers being drawn...but I had to take the advice of these smart women here and move on..

[linn65]

I understand now why "No" scans it makes sense. I would be afraid to scan me now after all this poison they put in my body to kill the poisin. However, the Brain scan had me perplexed whether people did one or did not do one.