what more should I do?

Kimberly Lewis · 12-21-2008, 03:16 AM

Hi, I stopped pushing for brain MRI's and other scans. Just got weary of the whole cancer mindset honestly. Now 3.5 years out and wondered if anyone else with locally advanced, stage 3, has any opinions on this. Should I start looking again for an Onc. who believes them necessary? I want to be responsible about this. I just got to the point that I wanted some time off from cancer. Merry Christmas all...

Mary Jo · 12-21-2008, 06:09 AM

Hi Kim....I have no opinions on this but did want to say congrats on being 3.5 years out - me too

also, it is nice seeing you here again.

Merry Christmas to you too....

Mary Jo

Becky · 12-21-2008, 11:37 AM

Dear Kim

Some in your situation would want to get scanned once a year and others go on and wait if symptoms should appear and not go away in 2-3 weeks.

One thing I do (and I am Stage 2) is MRI of the brain every 18 months or so. I figure this is the one place where finding something early has clear benefits. Some of these are that the tumor is smaller and may not have seeded the brain all over. This would allow you to just get one or two small nasties gamma or cyber knifed (and use some Tykerb too perhaps or only Tykerb) instead of Whole brain radiation at the get go.

Mets in other organs are going to respond the same if the tumor is 1 cm or 2 cm with chemo but the brain is different and the brain is who you are.

So that's why I do what I do - no scans/X rays to reduce radiation exposure (except mammo or if one should break their leg in an accident) and a brain MRI every now and again (I should be thinking about that sometime this yr).

Everybody needs to think this through on their own and their feelings on it.

For everyone else - this is for those who have successfully received adjuvant therapy. Those who are battling disease or are Stage 4 have and need testing to ensure what is going on unless markers or the Her2 serum tests are accurate for that.

Everyone to ask their docs how they feel about scans in general even if you don't want any to just see how most oncs feel about it. That would be interesting.

Merry Christmas Kimberly

Brenda_D · 12-21-2008, 02:13 PM

I'm also Stage 3, locally advanced. I'm 2 years out from my dx and surgery, but was told by Lilly Shockney, that your time out usually goes from the end of your active treatment. So that means I'm about 7 months out.
I asked my Onc what kind of follow up we'd do to make sure nothing was going on, and he said we'd wait for symptoms.
Then I asked him about the positive IM node I had, and that there were no symptoms, and he said we'd do scans every so often.
I had a follow up visit last week, and asked about a scan, and he said we'd wait awhile. I told him I was unsure about my future insurance after this month and he said, we'd go ahead and do it now.
I kind of assume that maybe I would have gotten a scan each year. It just got pushed up a little this time.
I still get a mammo every 6 months on the BC side.
Other than that, I'm not pushing for any more scans.
I get bloodwork done every 6 months at my follow up exams.
Now I'm curious how often I'll be having my follow ups.

Soccermom · 12-23-2008, 04:39 PM

Kim,
You need to be seeing an Onc who is also familiar with BRCA .
One of the first things that I learned about BRCA is that its a "rob eter to pay paul" thing when it comes to exposure to radiation.
I dont mean to be alarmist but its important for your onc to be up on things BRCA as well as Her2,
Hope your DD is well!
Marcia

Alice · 12-24-2008, 04:16 AM

My profile is similar to yours. I was stage 3 grade 3 locally advanced. My onc is of the mind that if there are no symptoms there are no scans unless I push for them. When I push for them she always agrees to doing them. There are 2 factors in this mindset, one is that there are many false positives and the other is that all the scans have their own potential for harm via radiation exposure.
Her other concern is the waiting factor. Have a scan and wait to see what it shows. wait and worry. Another point is that even with the scans it has been proven that the outcome is the same. many times I have questioned myself with listening to this aproach but I am very comfortable with my decisions to this point. Good luck in the future.
Alice

Kimberly Lewis · 01-22-2009, 04:41 AM

Thanks Mary Jo, Becky, Marcia, Brenda and Alice. Sorry I was late responding - I never got an email notification that you guys wrote back. I am so glad I finally checked!!!!
I had a negative brain MRI, and really am glad I went ahead with it. The insurance with this new Co. is pretty good so that worked out.

Marcia, my Onc decided not to drive to my office location anymore and I got a very nice, young, up to date guy I am very impressed with. Thank God! He was very familiar with BRCA , I mentioned a report that was real new and he was familiar with it - gotta test these guys.

Becky; you are right - the brain tumors are better beaten when they are little. I needed that reminder.

Brenda - I really like Lilly Shockney and had never heard that counting from last treatment thing - thanks for mentioning it. I too had been told "wait for symptoms" but with my personality I found that insulting. I never had symptoms of breast cancer, the mamo didn't pick it up! (well, maybe the folks reading it were a little less skilled) I am so happy you mentioned the insurance angle and got your scan done.

Alice; in my experience the false negative is a lot worse than the false positive! Very happy that your Onc will do whatever you are comfortable with, thats great. I think that is the best that we can hope for. I love being in the drivers seat rather than the trunk!

Thank you all for the encouragement! Love, Kim