Not any kinds of scans will be done!
 

Is the only reason to do a scan is due to symptoms? How would a person no because my oncologist said no scans needed and herceptin work.

Re: Not any kinds of scans will be done!
 

Hmmmm . . . I had a post chemo pet scan, and if I remember correctly mammograms every 6 months until I hit 5 years. There was also a breast MRI, and a brain MRI.

I had to be diagnosed with "general anxiety disorder" or something like that to get my scans. Frankly I think that is what the medical staff suffers from in response to my numerous requests for tests and information.

Yes, you have the type of doctor that doesn't believe in scans. But there are other doctors that use scans for follow up.

You can always get a second opinion.

Re: Not any kinds of scans will be done!
 

My mammograms had been misread for three years staight! It was only when I requested it through the original surgeon that the recurrence was found just before the 4th year mark.

I had lost weight, lost jobs, ...

My point is that 'clear' scans can be misleading ... Pay attention to your physical condition and report any unusual signs to your doctor. Also check your family medical history/BRCA1/BRCA2 and find out if you are at high risk of any other cancers.

Re: Not any kinds of scans will be done!
 

It does seem strange not to get any scans. I do have a follow up appt with my Breast Surgeon August 5th, so maybe he might do a mammogram on right side. It just seems strange since HER2 is in your blood system that they do not check with a pet scan or something. ONC said everybody's body would light up in different places and a person would be afraid all the time. Also, he said Stage 1V is different they do scans then, but I am Stage 111.

Re: Not any kinds of scans will be done!
 

My Onc only does scans with any symptoms or continuing pain and I think this is common, the usual rule of thumb is any symptom that continues for 2-3 weeks should be investigated more.

Re: Not any kinds of scans will be done!
 

Okay, just want to ask this question....When I had BC I had NO symptoms of illness at all just found a couple lumps in my breast that seemed to come out of no where. So I sit her and think if you have cancer in liver what would be a symptom?? Lung, I assume you would cough, brain?? I sure would want to catch it quicker than I did the BC if at all possible!! I think or feel like I am going to be just fine, but I like to know possibilities and am not trying to sound gloom and doom, cynical or anything else. Just curious.

Re: Not any kinds of scans will be done!
 

One other thing to remember about scans: everyone has a lifetime limit for radiation exposure. Since it is not the practice to track cumulative exposure for patients, no one knows when you have reached your upper limit. Radiation itself is cancinogenic. It should be used sparingly and only where necessary. Asymptomatic scanning is not normally medically necessary.

Hopeful

Re: Not any kinds of scans will be done!
 

It seems different doctors have different protocols with scans I guess. I read on here having scan anxiety, and I think I suppose I will not need anxiety because I won't be having scans! LOL

And maybe I did not notice and people that were getting the scans were in stage IV not III.

It also seems strange finishing up herceptin and just assume it works. I have gotten quite and education up close and personal on something I never thought I would. Hopefully, I can help someone else just like this board as helped me.

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

Re: Not any kinds of scans will be done!
 

Hi linn...I will finish my last TCH treatment July 22nd...then Herceptin...I will tell you, being the anxious person I am...I asked my MO about scans, etc...he said "only symptoms"...I do have migraines...will see what happens from here...they have subsided a bit...
However, I am going to have to go by faith...my prayers...trust in God... ohhhh as tough as it may be, to walk that out!! I DO NOT want to live a life of fear...!!! This has been such a rough road already...as you know...I can't begin to thank soooo many of you for encouraging me with such love, knowledge and wisdom...
STAY POSITIVE!!!! Hugs to you!!

Re: Not any kinds of scans will be done!
 

As far as radiation and limits!! I cannot imgine not reaching that limit!! :)

Denise,

3% goes of BC goes to brain, intersting. I didn't know the perentage. Do you know the percentage for the rest; Liver, Lungs, or Bones??? HER2 is only in 20% of patients from the get go so we are unique from the start.

Re: Not any kinds of scans will be done!
 

Susan,

1 more of TCH very good if that can be good! :) Also, according to my ONC which I was confused on before is he only says 17 Herceptin's total, so you should be done with Herceptin alone next April. I really feel cancer free, but I do go back to the thought BC NEVER hurt just the darn treatment. HER2 BC is a complicated beast!!

Re: Not any kinds of scans will be done!
 

no scans for me either...only if I am symptomatic - I had a bone scan a few months ago because of on-going back pain which I have attributed to my recon surgery but my onc wanted one anyway - all clear
no bloodwork, nothing for me. My onc just does a manual exam when I go in for my 3 month check-up
does everyone else go every 3 months? when do I graduate to every 6 mos

Re: Not any kinds of scans will be done!
 

I say my ONC yesterday, my BS August 5th, but my ONC scheduled a follow up back in 6 months with him. He said something about him and the BS rotating seeing me, and I want to say....Since no scans, no tests or anything if I have symptoms I will make an appt. No need for a meet and greet!! It will be interesting in August what my BS will say about next appointment, but I will tell him what the ONC said about rotating visits. I know they said the first 2 years are the HIGHest percentages to have a reoccurance, but I am still not sure when those two years start. I always end up having more questions then answers.

I did find out I can bowl on occassion just not for 6 hours straight! LOL...You are not supposed to have blood drawn or BP taken from arm after lymph nodes removed, but ONC made it sound to me I can do anything I want as long as its in moderation.

Re: Not any kinds of scans will be done!
 

Catching mets early usually doesn't matter. While for brain mets, catching them when they are smaller and fewer can open up more treatment options, for liver, lung and bone, it doesn't seem to matter.

I was about 4 years out and I had a ct scan because of pain and my liver was clear. A year later, I had horrible pain and had another ct scan. I had two liver tumors, one was 11 cm. I have never seen anyone on this site or other ones that i am on have a tumor that big.
You would think my prognosis would be worse than someone who had a couple tiny ones. Yet, here I am. I have been Ned for almost 2 1/2 years and doing well, while sadly I have seen women diagnosed after me with smaller tumors who are now gone.
What matters is how you respond to treatment, not how early mets are found.
The important thing is to notify your onc of anything that doesn't go away after 2 weeks. back pain, stomach pain or bloating, cough, shortness of breath, etc.


Laurie

Re: Not any kinds of scans will be done!
 

Thank you Laurie I didn't realize catching them early doesn't really make a difference. That helps! I wouldn't know if I had any symptoms really because in this year I feel like my body has been chewed up and spit out. I have two more herceptin's and unlike others I guess. I can almost feel the Herceptin go straight to my ankles and feet then they hurt. Then my hands hurt which it feels like in my mind what I think it feels like is "Arthritis". Then a few days before I go for the next Herceptin it feels better. I get Herceptin and it starts all over. It's strange unlike TCH it took a few days to really hit hard it seems Herceptin I can feel that night in my body.

My point is before I would come to the conclusion I am having some sort of problem I need to be off this treatment for a little bit I think. It is still preplexing to me to assume Hercpetin is working!

Re: Not any kinds of scans will be done!
 

I am curious as to why the Pet Scan does not include the brain.

Remember Idele Davidson's book chemo brain, and the research she discovered showed if an original pet scan included the brain, subsequent pet scans could help to show when the chemo damage to the brain was occurring.

Re: Not any kinds of scans will be done!
 

Breast cancer: no symptoms.
Liver mets: no symptoms.


Karen

Re: Not any kinds of scans will be done!
 

I requested scan and my oncologist did them. I haven't had a bone scan yet so, I am going to ask him when I see him on the 19th. My left knee and leg is very painful. Will let you know

Re: Not any kinds of scans will be done!
 

My oncologist or breast surgeon did not order any end of treatment scans. If you do have
any symptoms that last over a few weeks they will certainly order the appropriate scan. Roz cant remember when you go to the six month checkup routine.