Scans or ways to evaluate cancer after chemo?

[gdavis]

My wife Deb has completed A/C cycles (4) and Taxol/Herceptin cycles (12 @ 1week intervals). She just started the Herceptin alone at 1/week for 40 weeks. She was diagnosed with DCIS, microinvasion, Her2+ (at some level or grade), ER+PR+, 1 node of 6 removed with cancer (stage 2...). They assumed the grade to be high but couldn't tell in from the biopsy.

My question is this; we asked the oncologist about doing some form of scan, PET or MRI or something to find out if there was any cancer elsewhere in her body after these initial chemo sessions were completed.

He told us that he doesn't recommend doing that since there are more problems with false positives than help in finding anything. He recommends waiting until a sympton arises.

But in reality, there were no symptons initially. So why should we wait for symptoms when it seems like that would be too late to do anything about it.

Does anyone know when and why scans of any type are performed????

thanks,

[Terry Kolhede]

If you go to the Susan Love MD website.. she addresses this very question. I think the FAQ site. I wondered the same thing. What they do is the initial scans to develope a base line. After that they see no point in additional tests. I'd hate to paraphase her logic.. best check the site.

[gdavis]

Thanks, I read that site info just now. It does say the same thing that the doctor said about avoiding any type of PET scans or other since they are inconclusive about whether cancer has spread.

But if I read a lot of the posts on this support group, there seems to be a lot of women who are getting scans of some kind. Is it only those people who have had specific symptoms that lead the doctors to investigate the source of those problems- like liver, brain or bone symptoms?

[StephN]

Hi -
And you have asked a question that has been batted around on this board for literally years now.

There is a standard protocol for followup that has emerged from many responses.
You wife should have followup blood tests during her chemo and radiation. Then every three months for a year. Is she having radiation??
She should have a chest x-ray and a Dexa bone scan to establish her bone density and see if she is in need of anything to strengthen her bones.

If she has any kind of unusual pain that lasts for more than a few days she should report it.

What I have given above is the VERY MINIMUM!
Many med oncs will ask for a chest/abdoman CT scan for a baseline for comparison sould mets be found later. Often we do have some little spots in our lung, liver or brain that are harmless, and the Rad oncs are good at spotting those differences. If something does show up, they will often take a wait and see and check in 3 months to see if the little spot did anything. This is not a bad thing. Only "con" is that CT scans do expose us to a small amount of radiation.

[Becky]

I am stage 2A (with one node involved) Her2 + and ER+PR-


My onco baseline scans in the beginning and scans on every one year anniversary. This includes CT of the chest, abdomen and pelvis as well as a bone scan. He says he does this to all Her 2+ breast cancer patients. If I was not Her 2+, he would not scan at this stage. He normally would not do a brain MRI except for higher stage/risk Her 2+ but I have sent him many of the newer studies on this and he easily agreed to begin doing at least a once per year brain MRI on me as the information coming out (especially at SABCS) is showing the using Herceptin as an adjuvant/primary treatment is showing increased occurance of brain mets.

I do feel that catching a spread earlier is better but there are also studies disputing this. However, you can be the kind of person that doesn't show symptoms until things are really, really bad.

Ultimately, it is up to you and how much you want to insist on the testing. I believe you can get whatever you want. You just have to be prepared for normal cysts and other normal things to turn up and then be ruled normal.

(For example - I am symptomless on quite severe arthiritis in my right ankle (I even jog and walk extensively for exercise) and my right ankle lights up like a lighthouse beacon during my bone scan - the first time, they had to rule out metasized cancer with an MRI - quite a fright. But now, its just the arthiritis in my right ankle). You can have liver or lung cysts that are also benign and just part of you - no big deal - this is what your doctor is warning you about. Because when or if they are discovered, you only think the worst.

I hope this helps and if you make a decision to insist on scans, good luck going with your doctor.

Best regards

Becky

[Alice]

My onc is also of the opinion that scans should be done if there is a symptom.There is a variety of reasons for this. I haven't gone to the sight listed above but I have read the Dr. Love breast book which sited many of the reasons to wait for symptoms and I assume they are the same.One problem with scans is as your Dr. said about the false positves but also many scans can not detect cancer until it has reached a certain size.You could have a scan on monday and if there aren't enough cells to detect it would be negative and in a few days or weeks it could be detectable, with this in mind we would be scanning everyone every day. It would be nice if a test could be developed to detect individual cancer cells.Also even if it is picked up before symptoms are present the overall survival remains the same.
Metastatic spread to other tissues tends to be symtomatic (ie:bone pain,elevated liver values etc.)as compaired to primary breast tumor which can go unnticed for long periods of time.
Some of your description of the pathology is confusing.If there is any node involvement there should be some invasive carcinoma not only DCIS.I could have read it wrong.Also they should be able to be more specific about the grade not just that it could be high.It might help if you can get them to be more specific.
I know it is scarry to go without scans but I am comfortable with the explanations as to why. I also know that if I ask my Dr. for a scan she will ok it even if she doesn't feel it is necessary.

Good luck, It can all be so confusing, Alice

[gdavis]

Wow, these points are really good. I'm printing them out to share with my wife. I really appreciate the input.

To answer one of the questions- she is not having radiation as they told us with a full unilaterla mastectomy, there was no tissue left to radiate. But we now wonder about why not have the other side mastectomy too....

[Cheryl E]

I had a single mastectomy and one node positive. At the initiation of chemo, my onc ordered bone scan, abdom, chest, pelvic CTs, and chest xray for baseline. His standard for Her2+ is to repeat these tests annually. I also get full blood work done every 3 mos. I am 3 years post dx.

Cheryl

[kristen]

Gina,

My surgeon does mam's every 6 months for 2 years and a chest annually. And I saw my onc. every 3 months for 2 years and at that time, she drew blood work and tumor markers. Is your oncologist pro-TM's or not? Mine doesn't specifically care for them, but it makes me feel easier and she draws the blood for them. My neruologist, I have had headaches for years, it was her recommendation that for the first couple of years she would do an MRI every 6 months of the brain just to be sure nothing was happening up there.
My onc. was very good about getting me a PET SCAN at the end of 2 years just for peace of mind, she called it re-staging.
It's a catch 22, some women like to know, but the waiting is horrible until you get the results back and others prefer to see if any symptoms arise. I think you will ask for what you want that will give you some peace of mind and be able to go on with your life. It's hard, I wish you the best in finding out your way....

[RobinP]

Many of us here have periodic MRIs even if we have to make up the symptoms as the sooner you can find the lesion, the better you can treat with gamma knife. The problem is once brain lesions are large, over I think 3cm, you can't use something as simple as noninvasive gamma knife radiation. Please note; however, that brain mets is more common in er,pr negative bc.

I also suggest at least biannual evaluation of blood tests for liver enzymes, ca27/29 and serum her2. Beyond that you can have MRIs done just about for any ache, knowing a MRI offers no risk of radiation. Personally, I just am not into pet and cat scans due to the risk of low amounts of rradiation exposure. However, if I was to have bone pain, a bone scan is most purdent for a bone mets workup.

Perhaps my approach is less diagnostic than others here but I was stage1, with only a 4mm invasive her2. So I figure I am probably at low risk for a relapse. Also, let me say that I do not recommend the wait and see program that most oncologist advocate nor do suggest we do a constant witch hunt. I think you have to met somewhere in between at a happy medium that suits you. I do want to add that it seems only logical that the sooner you treat a mets, the better chance of sucessful treatment.

[Yorkiegirl]

Oh Wow Robin that sentence below that you wrote has just now thrown me into a tissy, now I have something else to worry about. I am ER- PR- .

I did not know this.

Vicki



""Please note; however, that brain mets is more common in er,pr negative bc.""

[tammymarie1971]

I have to say I disagree with the wait and see approach. The idea of waiting for symptoms is just too risky!!!! My previous onc was of that opinion of waiting and lets just see...Well I was dx'd at 30 while pregnant with the fourth child I had a 5cm tumor with no node involvement. I went through left mastectomy, chemo, rads and tamoxifen. 2yrs later I decided to start the ball rolling for reconstruction so this surgeon sent me for a complete exam it was when she ordered a ca-15-3 that we noticed a slight elevation my GP sent me for another one 3 mos later and it was tripled. Now my regular onc did not send me for these tests and had I not had them I would not have found out about a 3cm tumor in my liver.
My onc was of the opinion whether you catch a recurrence sooner or later it doesn't matter the outcome is still the same!!!YUK!
I disagree...Because my liver was caught early I was a candidate for liver resection..and this was only because of the one single solitary spot on my liver!!! Now almost 2 yrs later my liver is still clean!!! Although I have since been dx'd with bone mets these too were caught early because of the ct scan check up on my liver!!

What I'm trying to say is that we stand a way better chance of if not a cure than at least longevity if mets are caught early..To me it seems simplest to keep track of tumor markers and watch their pattern and if there are suspicions than get the scans to find out what is going on!!..This of course is only my humble opinion.
Tammy

[margo]

My PET/CT scan from last week shows that my liver looks great. I had an RFA, which has been successful. The FDG did not even register an SUV score in this organ. My SUV score has dropped to zero over time.

However, the SUV's at my lumpectomy (w/shrinking hematoma) site are rising over time (1.4, 1.9, 2.4). Last week, my value was 2.4 and a comment of "Malignancy Not Excluded, further testing required". My surgeon and Oncologist seem to think this is a false positive. If so, why the rising score? My lumpectomy was in 12/04.

At surgical sites, is anyone else experiencing:

1. Rising SUV's?
2. Level SUV's?
3. SUV's slowly dropping and/or returning to zero?

[astrid]

You wife’s staging and node involvement really dictate how much and what type of scans are needed. With early stage breast cancer (stage 1 and 2) and no node involvement, scans usually do not show anything and are not necessary. Cancer cells take awhile to grow before they can be detected. Ask for a copy of the pathology report and review it carefully. What you do not understand you can ask you ONC to explain or ask here or find information on the web. Ask for a baseline bone scan as the bones are one of the most common areas for cancer spread. This does not involve a lot of radiation at all. Another base line that you could ask for is an ultrasound of you vital organs; Liver, spleen, gallbladder etc. Ultrasounds do not involve radiation and are non invasive. A chest x-ray is always done before surgery to ensure your lungs are clear for surgery. They are not looking for tumors on the x-ray if you are early stage. Ask your ONC to request a CA27/29 as a baseline next time blood is drawn. Less than 38 is desirable. CA 27-29, also called breast carcinoma-associated antigen, is used as a marker for breast cancer. Eighty percent of women with breast cancer have an increased CA 27-29 level. This marker may be used with other procedures and tumor marker levels such as CA 15-3 to check for recurrences of cancer in previously treated women. An MRI also does not involve radiation but is a very lengthy test. MRIs are usually done on women with dense breasts to supplement a mammogram. Always get a copy of your blood work results and check you liver enzyme levels. Elevated levels may indicate liver involvement. The most critical tests are the AST and ALT. AST should be between 14-38. ALT should be between 15-48. They most likely drew blood before every chemo treatment and if you did not get your lab results you can request them.

[tousled1]

I am stage III and my oncologist will, at my request, perform the CA27-29 blood test any time I want. As for scans, she will also send me for scans. Since my surgery I haven't had any CT, bone, or PET scans done. I have had an MRI of the brain done due to the fact that I have been experiencing a constant headache. I should have the result of the MRI next week. Since your wife was DCIS, which is considered stage 0, I don't think the oncologist will order any scans unless she has some symptoms which would warrant a test.

[Chelee]

I was just discussing this subject with some women at my breast center. We all can't help but think the SOONER you catch mets it HAS to be better. (I do understand about the false positives however.) But I am MORE concerned since I am a stage IIIa, her2/neu 3+++ in catching any mets when they are small. Lets say I had liver or lung mets. Seems to me...the SOONER they find them...the better odds I have to get them under control and beat it.

To me...its sort of like coming home and finding a SMALL kitchen fire on your stove that is just going to reach your kitchen cabinet and really start flaming up. Do you put out the fire while its STILL SMALL...or just sit down and have some coffee first and try to deal with it later. Now its not only destroyed a kitchen cabinet...maybe half of your house has burned down now and there is no chance of getting it under control and your left with nothing.

I think with us her2 gals...scans are important. I don't want to over do it...nor do I want to be exposed to excessive radiation and other things if its not necessary...but if I am truly concerned and worried about something...I WANT my scans done for piece of mind if nothing else.

Seems common sense would dictate to do scans sooner then later when it comes to aggressive cancers like mine. Again, I want to PUT OUT the fire now before it burns down the house.

They say it makes no difference in over all survival. How can that be? If you find the mets to brain, liver, lungs, bone, etc...and fight it EARLY verses after its spread extensively...how can it not help in your over all survival? I must be missing something here? (All of us women at the center agree on this topic 100% for a change. )

One women said its the insurance companies putting pressure on the doctors not to order all these scans unless they absolutely have to in order to save money. (I hope thats not it.)

Chelee

[heblaj01]

I would like to present some arguments in favour of periodic PET/CT scan.

First,several studies in the past have shown that 30 to 40% of PET scans have resulted in changes of treatment protocols. This not a negligeable factor in improving outcomes.
Second, modern PET/CT scans can now detect tumours as small as 1 to 2mm.
No other imaging procedure is that sensitive. So it means early detection which in the case of some types of tumours may be a crucial advantage to avoid the pitfalls of dealing with larger lesions.
Third, PET/CT scans even with their false positives, have low false negatives which would be a worse defect to live with.
Fourth, the false positives may lead to a lot of unnecessary worry & additional diagnostic procedures but it will not lead to missing a new lesion as would be the case if the scan was not done. So it is a choice between worry or possibly sorry.

I would like also to remind that new precautions have been recommanded to reduce false positives such as warm blankets during the scans & warm garnments just before (in addition to several others precautions).

[suzan w]

diagnosed May 2005, invasive lobular-left breast...small tumor 7mm. node neg. ER+,PR+,Her2++. bilateral mastectomy June '05. Scans: Bone scan, CT scan. Had the Oncotype DX test to predict recurrence...high intermediate range. Did chemo-A/C and am now doing herceptin every 3 weeks for a year (will be done in Oct.) and Arimidex for five years. Have CA25,27blood tests every 3 weeks with the routine blood work. Will have a follow-up bone scan tomorrow. Then, after herceptin, blood work every 3 months for a year, the second year out will be seen every 6 months, and then once a year.My oncologist says that any time I am worried about anything, and want a scan, she will order it! Routinely, however, she does not do scans unless there are symptoms. I think being worried is a good enough symptom!!! The constant worry of this disease is so hard!!!

[saleboat]

The studies that show no survival benefit based on routine scanning (for early stage bc) are all pre-Herceptin and lots of other new targeted treatment options-- gamma knife, etc. I can't help but wonder if that with all the new Her2 therapies, these studies are outdated.

That said, my Onc doesn't do routine scans, and I'm in no hurry to get them. But the argument that 'studies show...blah blah' is not an argument. At this point, I think it would be better to say 'we don't know' and should be subject of further study.

Jen

[vickie h]

I have Pet/CAT scans done every 6 months, also tumor markers ca15 and 27/29 every 6 weeks. I was diag. 2/2004 with stage IIIB her 2+++, er/pr-, 12mm tumor (left) with node involvement. 4 rounds of taxotere/carbo, mastectomy 7/04 with removal of 19 nodes, 6 positive, 1 year of weekly taxol/herceptin 9/04-8/05. 2 rounds of radiation (66), then Avastin and herceptin 8/05 to present. I just had my latest PET and it showed increased uptake in the neck and right breast areas, as well as the left axilla area. I asked for the PET scan and my Dr. believes in them every 6 months while active cancer because you can change TX quickly and sometimes symptoms don't appear. I believe in any kind of prevention, and early Treatment. Good luck and prayers for your wife. I send you love and hope, Vickie H