Routine Scans no good....

In the earlier days, cancer patients used to have routine scans, even if in remission or early stages. Nowadays, oncs no longer perform them, unless symptoms acknowledged. They say that they found routine scans not improve / better our survivals. Huh???

Yet, there were some of us that found our mets without symptoms. Don't you think that if the mets caught early would be much easier to be treated?...

I still don't get it!...

Does somebody know the reason for getting no more routine scans?

[StephN]

One thing I have heard is that the docs say they don't want to expose us to more radiation than necessary. They have other screening tools that can help catch mets. But, these don't work always for brain and other mets unless a marker is up like mine was. Plus the blood work has to be done in the first place and many docs don't trust that either!!!

The insurance providers may also discourage too much expensive scanning, without symptoms of some sort to report as a reason for the scan. I know we often have to "exaggerate" a symptom to get our screening brain MRI's.

If we all ask our docs, we will probably get numerous answers, some satisfactory and some not!

Hi Jo Jo,

I just recently had this conversation with my Doctor. He thought that unless I had symptoms or my markers were up that it was best not to be exposed to any more radiation. He said that ultimately it was up to me cause it has been a year since my last full body PET. I feel like I have had enough radiation in my 8 year battle with this disease, so I have decided to pass on scans for now (with the exception of regular brain MRIs of course). So I guess it boils down to what we each feel more comfortable with.

Even Dr. Larsen at UCSF didn't recomend whole brain radiation along with my Gamma Knife that I'm having this Friday. He basicly didn't think the WBR would improve my odds enough to warrant the side effects. I'm still not sure on this one, but I'm going with his reccomendation because I really hate the thought of losing my hair when I'm just starting to feel so "normal" again!

Hope I don't regret my decision, it's just so hard to know what to do sometime.

Love Kim

Kim & Steph --

So, would a scan (CT or PET) taken only once a year still be onsidered "overexposure"? Maybe once every 3 month might be too often?...

Steph, based on my own experiences, I think even oncs & rad docs have different opinions of which can make a difference in our scan schedule.

My brain met was picked up by a MRI (without symptoms), but my onc said because of the fact that the rad dept had submitted a recommendation that I was to have a follow-up MRI every 3 months for monitoring my met. She even told me that, if not for the recommendation, she still would've NOT gotten me the follow-up MRI's in the 1st place. So, ever since 2004, I've been taking brain MRI's every 3 months, I've had shown 2 mets (or 1 met?) that grew in the same spot.

First, I had gamma knife & we thought we had nailed it, so to treat the regrowth instead of repeat gamma knife, a craniotomy was our next step.

To date, I've had one clear MRI follow-up (since craniotomy). I see my onc this Thursday (tmw) to get results of my CT scan of my torso & brain MRI that both were taken last week.

Kim, having met Dr. Larson before, I'm not surprised that UCSF doesn't like to do WBR, unless either gamma knife or cyper knife would not be able to target at brain mets, especially multiple ones. They consider the WBR as the last resort. You know that WBR can be done only once in a lifetime.

Kim, have you done your gamma knife yet?

My oncologist does not recomend that I receive WBR, and that has become more of the standard at Dana Farber. I do have an MRI every 3 months, but there is no rad exposure with that. I have not had a scan in a year, feel fine, and my markers are normal. I can't say for sure that I am NED because I haven't had the scans. If we all expect to be living longer with stage 4 and hoping for the cure at some point, then I think that it makes sense to reduce radiation exposure as much as possible. Sometimes I compare fighting this disease to investing in the stock market. There are no sure answers. You have to know yourself, get the information, and make decisions that you can live with. If scans reduce stress, then they are probably worth it.
Best wishes to everyone,
Barbara H.

whats your story, barbara

I was diagnosed in May 1998, stage 2b or 3a. 7 out of 9 lymph nodes affected; Mastectomy followed by 4 rounds of AC and 4 rounds of taxol. Then I had 7 weeks of radiation. Remained NED until May 2004. I am HER2 positive so if I had been in a Herceptin trial in 98 I would have been in the group that made it longer than 5 years. At the time I knew about it, but as everyone knows it was not offered for early stage disease. During the spring of 04 I begin getting headaches and was diagnosed with a 3cm tumor to the left prefrontal cortex. A pet scan revealed multiple small mets to the lungs, liver, nodes through out, and I had skin mets on my chest. I then had a craineotomy to remove lesion followed by stereotactic surgery. The worse part of the whole experience was the decadron. I wish I had known about this site at http://www.google.com/url?sa=t&ct=pr...aGauvLsZAOthat time so I would have understood why I was up all night and at the same time so weak. In July I started Herceptin without any other chemo to see if it would work, and also because my daughter's wedding was in July. By the end of the summer my tumor markers were all low normal, and the skin mets were gone. I went back to teach third grade in September and never missed a day of school. All my MRI's have been clean, but I am a wreck everytime I go for one. I have been on herceptin for a year and worry how long it will continue to work by itself.

Again, I can't say enough about how wonderful the supporters of this website are. It has really helped me get through this.

Thank you to all of you who post your messages.

Best,
Barbara

The question on scanning. I had this conversation with my oncologist last year because he said the NCI was recommending no scans unless we had symptoms. He said sometime in the near future the insurances would be following their recommendation. He told me he didn't have a problem scanning me every 6 months because I have IBC which is a more aggressive form of BC. However, because I am doing so well that may change to yearly. We will see. He pretty much lets me decided what I want to do. I think we are all different and if we are more comfortable doing it and the insurance will agree to pay then it should be ones choice. That is only my opinion for what its worth. Hugs, Sandy

[attachmentid=37]Ahh, another gray area.

I have continuing mets and have scans every 3 months. So far, they have shown to be very important in detecting new sites and/or healing sites.
I had a PET scan 2 weeks ago that showed a possible met of concern on my spine. My doc ordered a thorasic MRI to look closer at the area. I was concerned that even though the report said it wasn't in the epidural canal, that it could move there quickly. So I called the radiologist, in addition to talking to my onc, and told him my concerns about timing. Talking with him really helped.\

Sorry, off subject...

Although I worry about the radiation, I also am concerned about having constant chemo. It HAS to breakdown your body in some way.

But back to scans. You may have a scan today that is clear and in two months, that same scan can show many mets. That actually happened to me. Since we can't be scanned constantly, doctors have to look at other things like tumor markers and symptoms. Be aware of your body. For the most part, you'll know an unfamiliar ache/pain. I believe brain MRIs are the exception. They contain no radiation and you should definitely have one at least every 6 months, symptoms or not. By the way, that's my own personal belief, not from any medical source.

Of course, depending on your current status, you may be given more or fewer scans to follow the disease.

I'm afraid I've just rambled here. No answers.

But on the other hand, here's a great picture of my 20 day old step granddaughter.

Love and light,

Lisa

Lisa, your granddaughter is beautiful. Your post indicates that the decision to have scans is not so simple and thank you for the advice for us to be in tune with our bodies. I think that is why we are so tense before these scans. We can be clear one month, and two months later the scans reveal another story. Your words of wisdom also demonstrate that the decision to have scans or not should not be regulated by insurance companies. With MRIs I am afraid to go longer than 3 months.

Any idea when your beautiful granddaughter will be coming?

Best wshes,

Barbara H.

[Isabelle]

I was told finding mets early does not increase survival rates as it does for finding breast cancer the first time. Symptons count a lot once you have breast cancer mets. If you are in a lot of pain or can't breath, start treatments. Otherwise, hold off.

Scan results may rush you into treatments that use up options or prevent you from getting into trials that have newer drugs.


Fortunately I had a team of doctors that did not rush me back into treatment after mets showed up. We watched and did the least destructive things for 2 years before I went on Herceptin/Navelbine. My quality of life has been great.

The only scan I would really recommend is an MRI of the brain if you are on herceptin and doing well otherwise.

Isabelle in CT

Lisa,

Thanks for sharing your adorable pictures with us!

Would you say that as a Stage 1 "NED" HER2+++ and almost 3 years out who is now being blocked from receiving Herceptin, it would be a good idea for me to have a brain MRI?

I've had a bone scan at time of diagnosis, and a chest CT and breast MRI since then along with mammograms, and my markers have stayed well in the normal range... but I don't believe in the "wait for symptoms" theory, partly because it is so hard to judge whether a symptom is meaningful or not. Right now I have a "symptom" I am watching, a sore left lateral rib area (I am a left lumpectomee)... and over time I have had brief pressure-like pains just inside the skull that I never had before diagnosis. I truly don't know whether to blame those pains on the sudden huge lack of estrogen to the brain due to past chemotherapy or not.

My personal theory on recurrence for HER2+++'s is that most of us eventually do recur. I believe Barbara is living evidence. Data on HER2+++'s hasn't been collected ,long enough and what they do have hasn't been accurate enough. And since I am now stuck in the group who can't have Herceptin until I do recur, I would like to have your opinion.

Thanks

A.A.

Dear A.A.
I would get an MRI just to put your mind at ease, especially since you are having sensations in your head. I put it off since I used to get frequent headaches and thought it was just stress. Also, I was so far out and didn't know about this site at the time. MRI's are safe. They monitor reading progress with funcitonal MRIs at Yale for children who have dyslexia.

Since you are not getting herceptin, I would start exercising if are not already doing so. I didn't, but have started this summer. Exerciese and weight mangagement are supposed to be up there with herceptin for preventing recurrence.

Good luck,
Barbara H.

[Rozebud]

I have heard:

(1) Doesn't change prognosis or outcome or treatment since symptoms would have been present within weeks (hard to believe but that is what I've been told)

(2) Insurance doesn't like to pay w/o symptoms

(3) Causes undo anxiety

(4) Concerns about too much radiation

(5) Could give you false sense of security (mets could show up in another month)



I don't care - I still want 'em!

Hey Lisa, you have the CUTEST baby ever!! Happy congratulatory hugs to you, Gramma! :-)

I agree, Barbara. I'm no exercise fanatic and am easily bored with the repetitive nature of it, but in the patients I deal with, those who have added even modest exercise have done better all around. I am forcing myself to add a daily exercise routine. Thanks for the encouragement!

A.A>