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NEDenise · 07-10-2013, 09:23 AM

linn,
I don't know a thing about lung or liver mets.
And, I don't want to scare you... in fact I hope my advice will eventually put your mind at rest...

I was stage 3 also. My onc did not routinely do post treatment scans... the assumption being that Herceptin and the chemo did the trick.
For some reason I can't explain at my last Herceptin visit, I asked for a brain MRI. I didn't have any symptoms, I just had a gut feeling that my brain should be checked - because even the original PET didn't really cover my brain... and Herceptin can't cross the blood brain barrier. My onc said,"If you tell me you're having headaches, I can justify the MRI to your insurance company." So, I lied and said I had had 3 bad headaches that week.

She ordered the brain MRI, and told me..."They're not going to find anything, but at least it will put your mind at rest."

One week after that last Herceptin, I had the Brain MRI... and my onc had to call me and eat her words. I didn't have one brain met... I had two. And one is large and close to my brain stem... so it can't be surgically removed. I still wonder whether... if someone had thought to scan my brain sooner... would I have had an easier time. One thing I'm 100% sure of... if I had waited for symptoms to show up before I insisted on the brain MRI... it would have been too late.

Now, in the spirit of full disclosure, only 3% of HER2 BC patients get brain mets as their first and only site of mets. But why have insurance if not to make sure you're NOT one of those people?

Just my humble opinion. And naturally my own case colors my judgement on this topic. But... if I were you... I'd complain of bad headaches and/or dizziness... and get that MRI because your son needs his mom... and as I well know, there are no do-overs when it comes to cancer! (BTW - there's no radiation exposure with an MRI)

Denise

07-10-2013, 09:23 AM	#9
NEDenise Senior Member Join Date: Aug 2011 Location: Philly Suburbs Posts: 1,709	Re: Not any kinds of scans will be done! linn, I don't know a thing about lung or liver mets. And, I don't want to scare you... in fact I hope my advice will eventually put your mind at rest... I was stage 3 also. My onc did not routinely do post treatment scans... the assumption being that Herceptin and the chemo did the trick. For some reason I can't explain at my last Herceptin visit, I asked for a brain MRI. I didn't have any symptoms, I just had a gut feeling that my brain should be checked - because even the original PET didn't really cover my brain... and Herceptin can't cross the blood brain barrier. My onc said,"If you tell me you're having headaches, I can justify the MRI to your insurance company." So, I lied and said I had had 3 bad headaches that week. She ordered the brain MRI, and told me..."They're not going to find anything, but at least it will put your mind at rest." One week after that last Herceptin, I had the Brain MRI... and my onc had to call me and eat her words. I didn't have one brain met... I had two. And one is large and close to my brain stem... so it can't be surgically removed. I still wonder whether... if someone had thought to scan my brain sooner... would I have had an easier time. One thing I'm 100% sure of... if I had waited for symptoms to show up before I insisted on the brain MRI... it would have been too late. Now, in the spirit of full disclosure, only 3% of HER2 BC patients get brain mets as their first and only site of mets. But why have insurance if not to make sure you're NOT one of those people? Just my humble opinion. And naturally my own case colors my judgement on this topic. But... if I were you... I'd complain of bad headaches and/or dizziness... and get that MRI because your son needs his mom... and as I well know, there are no do-overs when it comes to cancer! (BTW - there's no radiation exposure with an MRI) Denise __________________ 1/11-needle biopsy 2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes 3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH! 4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks 8/26/11 finished Taxol!!! 10/7/11 mastectomy/DIEP recon 11/11 radiation x28 1/12/12 1st CANCER-VERSARY! 1/12 Low EF/Herceptin "Holiday" :( 2/12 EF up - Back on Herceptin, heart meds 4/2/1212 surgery to repair separated incision from DIEP recon 6/8/12 Return to work :) 6/17/12 Fall, shatter wrist,surgery to repair/insert plate :( 7/10/12 last Herceptin 7/23/12 Brain Mets %$&#! 3cm and 1cm 8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb 8/23/12 Back to work 12/20/12 Injure back-3 weeks in wheel chair 1/12/13 2nd CANCER-VERSARY! 1/14/13 herniate disk in back - surgery to repair 1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm 5/3/13 Start Avastin to shrink necrosis 5/10/13 begin weaning steroids 6/18/13 Brain MRI - Avastin seems to be working! 6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear! 7/5/13 finally off steroids!! 7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin! 7/13/13 Symptoms return - back on steroids 7/26/13 Back on Avastin - try again! 8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :) 9/9/13 Brain MRI - fingers crossed “ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert