When to get scans, MRI & other tests

[Cure4Cat]

I am new to this site. I was wondering if anyone could give me feedback on when to get any type of test scan after treatment? I am almost done radiation and have a ways to go on Herceptin. I am nervous about distant recurrence. I have never had a brain scan and was told I did not need one. I still am not sure why? I have heard stories from fellow patients who had Her2 that metastasized to their colon but only found out during a standard colonoscopy test. (In Canada they are standard after 50.). Since I am only 32, I would have to fight to get these kinds of tests done. Should I worry about this? If so which tests are important? Initially I had a bone scan, chest MRI, heart test, mammogram & core needle biopsies. Maybe the bone scan covers the brain? Any clarity would be appreciated!

Thanks,
Cat

[caya]

Cat,

I am also Canadian, and the standard of care here for early stagers is not to do scans unless you have symptoms. I believe this is also the standard of care in the States as well, I'm sure one of our American sisters will chime in on this topic as well. I understand you are nervous about the non-testing, but many professionals believe that the anxiety associated with testing is very stressful and the risk of distant recurrence is low for early stagers. My onc. did a bone scan (I do not believe this covers the brain), chest xray, pelvic/transvaginal ultrasounds and blood work to aid the correct initial staging diagnosis.

There are tests that I get every year because I ask for them (my GP orders them) - a pelvic/transvaginal ultrasound, bone density (osteopania before treatment, now osteoporosis due to Femara). My onc. sends me for a digital mammogram and a breast MRI alternating every six months because my tumours were missed by a mammo and breast ultrasound due to extreme density - found by my plastic surgeon while doing breast reduction. I once had a cat scan of my brain just after I had finished chemo because I had a headache that lasted 6 days. (All was well, 2 days of percosets did it).

I think as a BC survivor you would be able to get a colonoscopy - your GP could probably order it for you. Is there a family history of colon cancer, or pre-cancerous polyps in your family?

I totally understand how you feel, but thankfully we have Herceptin now which has changed the face of Her2+ BC. I remember my onc. told me I had a "well over 90% cure rate" - yes, he used the word cure. I am nearly 5 years out now, and I can tell you that anxiety level lessens.

I see from your post you are quite young - have you considered getting testing for the BRCA 1 and 2 genes? I had the testing done because I was under 50 at diagnosis and I am of Ashkenazi Jewish descent (higher risk for the genes). I thankfully tested negative for the genes.

Try to focus on the good care you are getting, and not to worry about distant mets too much. You don't often hear about the survivors who are doing well because they are getting on with their lives.

all the best
caya

[WolverineFan]

Hi Cat,

Welcome to this board. You will find the people on this board to be a great resource, a tremendous inspiration and a huge support group.

As far as what scans are needed and when, that is typically dependent upon what stage you are, but I also think we need to be our biggest advocate, so if something concerns you and you aren't getting a good explanation from your oncologist, I would recommend getting a second opinion.

Outside of the scans you listed, I did have a pet scan after I completed Herceptin. Since I had was an early stager, I don't think this was common, but I had a rash that persisted on my spine that concerned my onc, which is why she requested the pet scan. I really appreciated that she did that, because that made me feel much better knowing that it came back clear.

You may want to talk to your onc about having a pet scan when you complete your Herceptin or just visit with him/her about the schedule they recommend for you post treatment.

Good luck to you,

Hayley

[Cure4Cat]

Thanks Caya!

I was 31 at diagnosis with a 6 month old son. No family history of bc. I had the gene testing done but it came back negative thankfully. Thank you for your advice. I am pretty sure that I had the same tests done as you. I try not to worry too much but I also want to be proactive. I have precious little boy (15 months now), and I want to do all I can to be there for him. I was hoping to have more but I don't think it is possible now.

Take care,
Cat

[Cure4Cat]

Thank you Hayley for your advice!

[tricia keegan]

Hi Cat,

I live in Ireland but it's only standard here to do scans with symptoms or pain too!
I had back pain a year ago and went through so many months of scans and tests and waiting , only to find it was simply sciatica!!!
So, I'm glad really these are not done as routine as would be a nervous wreck lol

[Cure4Cat]

Thanks Tricia!

[Jean]

Hi Cat,
Welcome and I am sorry that you have to be here.
Now that the chemo is behind you - the herceptin for the next year will be much easier. From your post it appears you have had good screening...tests. MRI, bone scan. A bone scan does not cover the brain. An MRI of the brain or CT (most centers prefer a ct) would provide information of the brain.

Since you are not having neurological symptons it is not standrard of care for a dr. to order the scan tests.
Some dr. do recommend MRIs routinely for their metastatic patients considered at high risk for brain metastases.

Some of the symptoms would be headaches, discoordinaiton, problems with gait. You would have to have some symptoms for your dr. to do scans on your brain.

Wishing you all the best.
Jean

[Cure4Cat]

Thank you Jean, this is very helpful.
Cat