Not any kinds of scans will be done! - Page 2

CoolBreeze · 07-10-2013, 06:52 PM

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 · 07-10-2013, 08:00 PM

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 · 07-11-2013, 03:43 PM

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 · 07-11-2013, 04:26 PM

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 · 07-13-2013, 09:19 AM

Very well said Ann.

'lizbeth · 07-13-2013, 12:04 PM

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/sh...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 · 07-13-2013, 12:20 PM

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 · 07-13-2013, 12:33 PM

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 · 07-13-2013, 06:43 PM

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 · 07-13-2013, 08:01 PM

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.