Treatment in the US vs. Canada

horsrde

Hi there,

I am writing to do some comparison in treatments and tests offered during and after breast cancer.  I live in Vancouver, Canada so am a patient of the Canadian Cancer Agency.  I am a three year breast cancer survivor and was diagnosed at the age of 30.  Over the last three years I have come to realize that you really have to be your own advocate and to be as knowledgeable as you possibly can with treatments and tests and follow ups etc.  I am also learning that being a cancer patient/survivor in the US opens up so many more options on testing and clinical trials.  So I am putting this out there.... To both Canadian and US survivors, what testing did you have upon diagnosis and what testing are you given after treatment???  For example a PET scan - have you had one since your treatment ended - and so how often? Pelvic Ultra sounds, bone scans, tumour markers?  I totally get that each diagnosis is different as each breast cancer is different,  but I need to know what test are out there because I am tired of the wait and see attitude of the doctors I am dealing with!!

Thanks so much for your replies, anything helps!

iodine

My lab after dx. demonstrated: stage 1, 1.9cm, ER pos, PR pos, HER2  neg., Neg nodes with SNB.  (first lab had me as ER NEG---had to move heaven and earth to have it retested at another lab)

I chose mast/recon and was told a 3% possibility that chemo would be helpful, so declined.  I chose mast due to my concerns about rads.  I took tamoxifen.

I have had a yearly mammo, blood work was for liver studies and routine chemistry.  I had tumor markers done day of dx. which were neg (so much for tumor markers being helpful)  My onc and I don't think tumor markers are worth the money or worry.

I had no further special tests other than mammo of the "good" boob.  Had one scare when microcals were found following an extra surgery on the good boob.  Had another after 6 mos and no change -- have con'd neg.

PET scans are not ordered very often, to my knowledge, but perhaps others will have different info.  MRI, when I was dx'd in '02 was rarely done.  Now more are done but it's still not a standard  test, I don't think.

At your age, you already know that you have a better chance of either recurrance or a new primary as you get older.  I hate that for you and I hate that my dd had to begin mammos early, but am glad she has been very good about that.

barbe1958

I had to ask for a bone scan from my GP and got one and am still waiting for results. I got all the other stuff to be expected, mammo, u/s, mri, etc. I don't feel like I'm lacking anything except a PET scan at which my doctor laughed.....sigh.

I did say, that seeing as I'm not getting a reconstruction, could I at least get liposuction from my ribs and arms to balance my new-flat chest? My surgeon said that would be considered cosmetic. sigh. 

dreamwriter

I was diagnosed from my first mammogram and 2 days later I had an US (but between the two I was told that I have breast cancer).  I had a mastectomy - 2 weeks later. The next day I had a bone scan and ultrasound (abdomenal).  Two weeks later I had a CT scan (a day earlier than scheduled....) and I was re-staged to Stage 4, mets to bones, liver and lungs.  Since then I have had a thoradesis and pleuradesis of both lungs and a year later a repeat to the right lung.  I still have pleural effusions.  I had a flu that put me in hospital (isolation) for 2 wks.  I had brain MRIs and CT scans and regular bone scans. I have had radiation to lessen bone pain - two separate sessions.  I will be having radiation to put my ovaries out of commission.   I do not think any money was spared to monitor my condition and in the US I would probably not be able to be monitored this closely.  I am a resident of Ontario, Canada.

spar2

I see the onc. every 6 months and have mammogram yearly.  If I am having any pain or problems she does a bone scan, or pet imaging.  About 4 months ago I had a pet imaging because of lumps underarms and in lower legs, no sign of cancer.  If you tell her your having headaches she will order a brain mri.  But you have to have the money or insurance to get them done.

horsrde

Thanks for the heads up on this stuff.

Just want to make sure that they are doing all that they can be. Which really concerns me that they are not in my case................. if money for tests is the bottom line - I wish that they would say "we don't have the funds for sending your case for such-in-such test, but we think it would be beneficial to get it done, would you be willing to pay?"  Hell ya I will pay,  but that doesn't seam to be an option around here either................. 

I asked my doctor then how do we know if the cancer is back anywhere in my body if we don't do tests.  Well do you know what he said............ "Oh we will know when the cancer is back or has spread. If the cancer goes to your lungs - you will start coughing up blood.  When the cancer goes to your liver and kidney, you will start peeing out blood.  When the cancer spreads to your bones you will have the worst pain ever in a certain bone(s).  Then we will know where the cancer is." -------------------------- I am sorry but isn't this a little freak'n late - when we have the technology to catch cancers in the beginning stages ...................... Sorry, I am pissed off here!  I just want to know that I am getting the best care possible......................

One oncoligist told me that I will not make it 5 years without a recurrence - well I am 3 years now so shouldn't we be looking for this stuff?????????????/