Not any kinds of scans will be done!

[linn65]

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.

['lizbeth]

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.

[Jackie07]

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.

[linn65]

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.

[tricia keegan]

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.

[linn65]

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.

[Hopeful]

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

[linn65]

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.

[NEDenise]

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

[SusanN]

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!!

[linn65]

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.

[linn65]

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!!

[roz123]

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

[linn65]

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.

[Lauriesh]

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

[linn65]

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!

['lizbeth]

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.

[KDR]

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


Karen

[msmanuf]

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

[LoisLane]

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.

[CoolBreeze]

The American Society of Clinical Oncology Guidelines do not recommend that kind of follow up for early stage women. Most oncologists follow this, although they aren't required to and some take patient emotional state into consideration.

Here is what it says, "The use of complete blood counts, chemistry panels, bone scans, chest radiographs, liver ultrasounds, pelvic ultrasounds, computed tomography scans, [18F] fluorodeoxyglucose–positron emission tomography scans, magnetic resonance imaging, and/or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination."

My oncologist didn't order any either until I became symptomatic, and mets were found in my liver. The reason is these tests are not benign entirely, many have radiation, and they also don't pick up on cancers that are too small to be symptomatic so can give a false sense of security - and also, the opposite. Everybody has spots on their lungs and liver and bones and when you scan with no symptoms, those things are found and must be explored and it causes a lot of fright and nervousness until it turns out to be routine.

Unfortunately, part of having had cancer is living with uncertainty. But trust me when I say this - your body will know if mets are there. Cancer affects us, in more ways than just pain. Pay attention to your body but don't assume every single pain is cancer, because even former cancer patients can have aches and pains. In fact, we have more than most people!

While my liver mets do hurt, I can tell when my cancer is active because I get very tired, much more tired than normal. I also lose weight, even if I'm eating normally. I just don't feel right. Now, of course, I always feel bad but it was very noticeable back in the beginning.

My advice? Do your very, very best to try to put cancer in the past. Stop talking about it, going to forums, reading blogs - put it in the past tense, do any ritualistic things that help you meet your goal of being a former cancer patient. (Let a balloon go on your anniversary, write a letter to cancer and burn it, etc.) I know people years past a diagnosis who still live cancer and I don't think that is healthy. You didn't spend time posting on cancer forums and reading about cancer before your diagnosis, so your goal should be to try to get back to your regular life, while acknowledging changes of course. Some body function may change, you will have had cancer - that is something that takes time to put in the past.

Any minute you spend worrying about something that hasn't happened is a minute you have taken away from yourself. So try to enjoy your life. I remember the time from end of treatment to my mets diagnosis as a wonderful time with my entire future layed out in front of me. Don't take that away from yourself.

*hugs*

[vlcarr]

CoolBreeze responded to a similar post I think a while back. CoolBreeze, I just want you to know it touched me deeply and if I could give you a high five I would.

With that said, I worried all the time the first year after Herceptin. I'm not sure when, or exactly why, but I let that balloon go. Maybe it's because managing lymphedema is a full time job....but I think it's really because I can't do a darn thing about it. It is NOT within my control and I like to control, lol.

When I've had issues, cancer is not even the first thing I think of as the reason. Maybe I'm in denial but it works.

Hopefully as time passes your anxiety will get better. I just wanted to let you know that I was totally there in the beginning but it has gotten better for me. Wishing you all the best!

[ElaineM]

Second opinions are always a good idea. Also go with your gut and ask for occassional scans if you think it is a good idea to do them. There are ways to limit your exposure to radiation and still get answers about your condition.

['lizbeth]

Linn65,

I can't tell you how many women have gone for scans based on intuition and they were right on.


I also went through the Herceptin withdrawals, yikes. I felt so protected during the infusions. Afterwards it felt like I was flying solo.

People have different levels of physical awareness in their bodies. The standard of care is a one size fits all. And anyone who buys something like that realizes it doesn't really fit themselves.

You have to decide what is right for you, and stick to your guns. A 2nd opinion is always appropriate. Ask around in your area to see which oncologist has a different style of follow-up.

If you are assertive, and self aware the strategy of waiting for symptoms is a good one. If you don't want to be a bother, or rock the boat, who would drag their feet on symptoms - then find a doctor who is more aggressive with follow up.

It is always best to find cancer earlier. The cost of a scan is far less expensive, and traumatic than the cost of surgery, radiation and chemotherapy. The downside is the risk of health problems developed from the testing - radiation, contrast, etc. (Okay, you probably won't get out of surgery or a biopsy, but if detected early enough you can avoid chemotherapy, and if early enough on a local recurrence radiation).

The highest risk of recurrence is in the first couple years and decreases with every year. (with ER/PR negative).

My acupuncturist gave me the advice to change my diet, exercise, habits. What I had done previously created an environment that allowed cancer to thrive.

To be honest, the cancer studies are so interesting. I truly wish I would have gotten a science minor in college. Looking forward to taking science courses and being on the other side of the microscope again!


I knew that I had a high risk of recurrence so I scoured the clinical trials and enrolled in a vaccine trial and the Energy study. I am helping to bring new cancer treatments to future patients. I enrolled in prescriptive exercise for cancer survivors. I did all I could to decrease my risk.

Maybe you can consider a clinical trial, such as a vaccine trial. Scans might be a part of this, and you could help others and gain peace of mind.

I'm sure you will find something that will work perfect for you!

[LoisLane]

Very well said Ann.

['lizbeth]

Vaccine Therapy in Treating Patients With Breast Cancer


Biological: GP2 peptide + GM-CSF vaccine
Biological: GM-CSF (sargramostim)
Biological: AE37 + GM-CSF vaccine

http://www.clinicaltrials.gov/ct2/show/NCT00524277?term=ae37+and+gp2&rank=1

Above is the link for one of the vaccine trials. SandraGA, ElizabethTX, myself and others have participated in this trial. It is still in Phase II and they have added booster shots so you would receive additional treatment to prevent cancer for approximately 2 1/2 years.

Once the phase II is over, the sponsoring companies will target the lower Her2 expressions in Phase III, as it is an "untapped" market (currently combined in with the triple negative group).

It is an excellent opportunity for someone, as interim reports show a statistical advantage in the vaccine arm. Even if you are in the control arm you will receive a small amount of the vaccine twice to assist in scientific research.

If this clinical trial won't work for you the Mayo Clinic has an vaccine trial, but enrollment is within 90 days of finishing Herceptin. The link above is for enrollment within 6 months.

If you can travel, and you are concerned about recurrence, and you want to help improve standard of care for future breast cancer patients - please contact the clinical trial nurse for more information.

You can also check out the latest trials on clinicaltrials.gov

It will take about another 5 - 7 years for approval, but wouldn't it be great if we could receive a vaccine shot after treatment that gives additional protection from recurrence?

[linn65]

I would try a vaccine down the road, but I read the surgery needed to be done first. Hey, in a couple years and hopefully all clear I could just move to Texas, get A job, and start a vaccine trial. ;) Dare to dream and move to a bigger city and NOT live in a small town with only one grocery store and hearing about my ex and his GF weekly.

['lizbeth]

OMG, I grew up in a little town and can totally relate! So funny, but you do get to know everybody and who they are related to out to the 2nd cousin. What is even more funny is when small town people start the conversation "Do you remember so & so, who was related to so & so, and lived down the street from . . . "

You need to move, I am surrounded by 7 large grocery stores within a 5 mile radius.

I spent a lot of time with my niece's family in the San Antonio area. Not only are the Texans extraordinarily polite and hospitable, they are good looking too. You might want to move on down and get yourself a cowboy!

Then your ex and his GF will be hearing about you, and you won't care, lmao!

[linn65]

Lol yes they do...then it's you know they live in that house with the white fence and they have a German Shepard and it is always running loose. I was excited when they opened up a short stop that had closed and reopened because we only have a McDonald's! And a special treat to myself I left the house and looking a little rough today, but I was going to go thru drive thru at the short stop and the Freaking drive thru had yellow tape up! Wth

['lizbeth]

I checked the location of your little Attica. I have family that lives in Champaign and Chicago. I think my Chicago Aunt and Uncle had a cabin for many years across the state line in Indiana. She just had a breast cancer recurrence after 17 years which was quite a surprise to all of us. She's in her 80s and went through chemo. A strong lady, that one is.

At least you had a McDonalds! We had to drive to the next town for that (I still have the Donald Duck and Bugs Bunny glasses from some promo 30 years ago).

We did have a Dairy Queen, and my boyfriend worked at a fast food restaurant called Larry's. The crazy thing was I went to Christmas at my boyfriend's that I met in college, and the owner of Larry's showed up as his family. Talk about a small world.

Oh no, yellow tape across the driveway! Now that is awful.