Pet Scan for Stage 1?
 

Hi All,

I have a question because to my surprise, as I went in for my last Herceptin treatment on May 4th, my onc said that she wanted me back in a month for a pet scan. I asked if something was wrong, and she said it was precautionary. I then ran into my surgical onc, and told her I was going to have a pet scan done, and she was aware of this. I asked her if this was routine for stage 1 bc patients, and she said "no". When I asked why I was getting it, she simply said that it was precautionary. My onc does not use tumor markers, so I am not sure what has them concerned. Honestly, I am grateful to get a pet scan as that way I know for sure that all is well, but am curious if other stage 1 patients had a pet scan after completing Herceptin, and also curious as to what may cause them concerns. I've been feeling really well, so I don't know that I said anything that would have them concerned. I have a rash along my spine from the Herceptin that I've had from the very beginning. My onc has never liked that, but from everything I've read (articles and on this board) a rash is not uncommon while taking Herceptin. Just curious if anyone has any thoughts to all of this.

Thanks so much, and a very happy Mother's Day to all her2 mom's out there!!!

Re: Pet Scan for Stage 1?
 

I got one when done with chemo (remember that I got Herceptin late) only for a baseline. We all have something - they might find a nodule here or there that is just you. You'd never had known otherwise. I am really not opposed to this however, ongoing might be a bummer to work out.

Happy Mother's Day to you and all!

Re: Pet Scan for Stage 1?
 

Did you have a PET before surgery or at any other time?

If they do one to check or for baseline, there is suggestion to make sure at least an hour passes from injection to scan. There is also suggestion that comparison scans should be done at the same specific >60 minute interval.
Maybe practice variance within/between facilities plays a role in variable results.

Re: Pet Scan for Stage 1?
 

I would definately think that this is just precautionary as she said. It's always good at the end of treatment to make sure there's nothing else out there or developed before they send you on your merry way, your oncologist is just being cautious which is good. The only "reason" I could see other than that would be the fact that you had 2 tumors originally and they want to make sure that nothing else has popped up. From someone who has had more pet scans than you can shake a stick at, be ready for all sorts of "non cancer" things to show up. I've always had something, nodules, a couple of times my ovaries have lit up and it's been nothing. It's good to have a base to show what is normal for you, so that if needed in the future they can see if something is abnormal...sherry

Re: Pet Scan for Stage 1?
 

Hi Hayley-

I am also Stage I-no nodes---(see below)

I was given a 'staging' baseline PET scan right after my surgery and before I started chemo January 2009, this allowed my Onc to form my treatment plan.
I also had a one-year follow PET this year Jan. 2010.

I am glad that I had these and that I now have comparisons for the future. I never thought anything was wrong with doing this--and was and still am relieved in many ways.

I am four weeks behind you on Herceptin and will finish up
June 4!!! Hooray!!!

Good Luck!!!

Re: Pet Scan for Stage 1?
 

Hi Hayley-
Also noticed you are also ER- and PR-
as you may have noticed--most HER2+ bc is ER+.....
so we are in a minority---

Question--your invasive tumor which type was it?

I also had DCIS--I had 11cm---but my invasive tumors
were ILC--lobular--

Happy Mothers Day---your family is beautiful.

Re: Pet Scan for Stage 1?
 

I was Stage 1 four years ago. I had a chest scan after radiation, and in the past few months I've had an Ultrasound of the abdomen and CAT of my abdomen and pelvis (my liver enzymes are elevated. I believe it's the Femara). I was shocked when the Onc was so aggressive, since I'm a Stage 1 survivor. This is a journey. Four years from now, remember I told you so.....

Re: Pet Scan for Stage 1?
 

Hayley,

Wished my oncologists had been as 'cautious' as yours. Her2 BC is now recognized to be a very aggressive form of cancer. Because of the 'invasive' component, combined with your young age, your oncologists are just following the standard protocol.

I wouldn't be worried too much about this first PET scan. But I would watch carefully the next few years for any signs of recurrence.

Congratulations on completing the Herceptin.

Re: Pet Scan for Stage 1?
 

Cal-Gal-

I think you are mistaken about most Her 2+ BC being also ER+ - I believe most Her2+ BC patients are ER-/PR- it is actually a small percentage who are triple positive or ER+PR- ...

Would one of the propellorheads chime in here? My onc. has told me that triple positive is not that common...

all the best
caya

Re: Pet Scan for Stage 1?
 

Caya--Your doctor said the same thing my oncologists told me when my pathology report came back last year as Her2+/ER+/Pr+. "One rare bird" is what they called me--male triple positive breast cancer.

And yes, they did a base line PET/CT on me before my surgery. It showed a nodule in the lung and thyroid. They weren't concerned about the lung but referred me to thyroid surgeon who did a biopsy. It was inconclusive so I am to go back after I am done with my Herceptin and have another go at it. One thing can lead to another with PET.

bird

Re: Pet Scan for Stage 1?
 

Hey Bird -

You really ARE a rare bird!! How are you doing?
My onc. was so floored because not only was I triple+, but my tumour also had "mucinous" characteristics - which is apparently a "good" prognostic factor - and very very rare - only 2-3% of BC is mucinous, and totally unheard of with HER2+ - he sent my tumour for testing 3 times, to 3 different labs - ultimately confirmed by FISH as triple+.

For once in my life, I wish I wasn't so "special."

all the best
caya

Re: Pet Scan for Stage 1?
 

Caya--I am doing great!. Just a little neuropathy in my right foot from the Taxotere/Carboplatin, a more or less permanent deep suntan from the radiation tx, and hot flashes at night from the Tamoxifen. I can't complain now and won't be complaining in 5 years if everything goes as planned.

I never heard of "mucinous characteristic" until now. Sounds like a rare bird syndrome to me.

bird

Re: Pet Scan for Stage 1?
 

I had scan before herceptin and then after.
I think your onc is smart and taking the best care.

As others have mentioned you may hear some report of a small nodule. A small nodule showed on my lung which has remained the same for 5 yrs. very small 4mm.

Always think the best news - that you will hear and confim all is well.

Congratulations on crossing the finish line. Enjoy your beautiful family.

Best wishes,
jean

Re: Pet Scan for Stage 1?
 

Hi Caya-

I am sure that I read this somewhere--

Her2+ and ER+ going so to speak hand-in-hand, if I can find I will pass along--I have not met that many Her2+ and ER- women.

Thanks!!!

Re: Pet Scan for Stage 1?
 

Although I thought ER was a clear minority of Her2+, recent bits suggest a 50/50 split:

Lapatinib plus Letrozole as First-Line Therapy for HER-2+ Hormone Receptor–Positive Metastatic Breast Cancer


for more on the Her2/ER crosstalk and ability of Her2+/ER- to turn ER+ after Her 2 therapy: HERE

Re: Pet Scan for Stage 1?
 

Hayley,
Did you have a PET before surgery?

Re: Pet Scan for Stage 1?
 

Thanks Rich--

Really interesting--I did read that about ER turning + AFTER Herceptin---I wonder how they test that if your tumor has already been removed?

Re: Pet Scan for Stage 1?
 

At this point, seems additional biopsy is the only way to check evolving status. In lieu of that, you can take green tea supplements that have some her2 and aromatase inhibition.

Re: Pet Scan for Stage 1?
 

In most studies the majority of her2+ breast cancers are ER-PR- and when they are ER+ they are usually much less ER+ (percentagewise) than her2- tumors.

Hope this helps

Re: Pet Scan for Stage 1?
 

I am IDC (with some DCIS and ALH) HER2+++, ER-/PR-, Stage 1, Grade 3. I too have heard the majority of HER2+ are ER-.

I have 10 Rads left (out of 33) and I asked my Rads ONC yesterday about another pet scan since my last one was just a day prior to my lumpectomy and he said about 3 months after radiation will be my next one. I don't know if I can wait that long....I really want to know NOW if my cancer has spread or if anything new has popped up.

Re: Pet Scan for Stage 1?
 

Hey, Caya, I am triple pos. and mucinous, too! Also, just to be another rare bird, I am highly ER & Pr positive!

Re: Pet Scan for Stage 1?
 

What is the difference between a PET scan and a CAT scan? If there is activity going on, which would be more reliable for early detection?

Re: Pet Scan for Stage 1?
 

greenacres -- I have a similar dx and did basically the same tx that you are going through. I didn't have my PET/CT scan until 8 wks after my last herceptin. This was to give my body a chance to "calm down" from all the treatments and see if they worked.

Re: Pet Scan for Stage 1?
 

PET is thought to show activity before it is measurable on CT. But there are things like inflammation that may read like "activity"

Re: Pet Scan for Stage 1?
 

Shannon - I am so sorry to hear if your possible recurrence. I will be saying prayers for you. Can you give a little more info? What did they find and how? Please feel free to e-mail me. You have the same EXACT diagnosis as me! Hang in there and keep positive thoughts. Hugs to you.
Sandra

Re: Pet Scan for Stage 1?
 

Sandra -- I don't remember the exact verbiage of the report but basically the PET showed an uptake of the radioactive glucose in the area immediately adjacent to the scar tissue from the previous lumpectomy. In addition the cells are asymmetrical and require further study. I have an appointment for us w/ biopsy scheduled for Tuesday so I should have a better idea if I'm dealing with a recurrence. My research has shown that women with HER2+ but no hormonal receptors are prone to "ipsilateral recurrence" within the first 5 yrs. when lumpectomy was performed. Obviously had either my surgeon or I known that I was HER2+ we would have done a mastectomy.

Re: Pet Scan for Stage 1?
 

Shannon56 - I hope your biopsy was B9 - let us know!

My onc just advised me to get a PET scan - to put to rest the various complaints I've had . I've attributed most of my bone aches to the Arimidex, so he also gave me a "holiday" to see if I feel better. Amazingly my right hip is nearly 90% better - but my upper body joints have been getting worse - not even swimming helps. My onc thinks the Arimidex is responsible for the on/off pain I have in my chest area (just above the port scar) - I tend to agree with him; I think it's my clavicle bone that hurts - but I can't tell for sure because there's no "rhythm" to the pain; it comes and goes at will - so that's why my onc ordered the Pet scan. I've had an enlarged mediastinal lymph node (seen last year on a cat scan) but have no other symptoms of problems - so hopefully the PET scan will be clear and I can not worry about my vacation from Arimidex - maybe he'll even extend if another month or two!

I know to expect "false positives" - I already know about small ovarian cysts - a liver cyst - a lung nodule - and a small pericardial effusion (all from the last cat scan) but my doctors have said these things are all "normal". I also warned my onc that my abdominal area will probably light up like the 4th of July after the problems with my free-tram and resultant hernia repair with mesh - but he said that won't be a concern. I'm not looking forward to getting more x-rays into my body - my onc agrees but said it's worth it now for the peace-of-mind as we move forward. So I'm praying the PET scan WILL give me peace-of-mind and not more things to worry about!

Re: Pet Scan for Stage 1?
 

And keep in mind my story... was HER2+, ER/PR+ at initial dx. I did tamoxifen for a year and aromasin for 4 months.

Recurrence was found when a small unknown spot of tumor came off the muscle during capsulectomy 16 months after finishing initial treatment (no herceptin). That tumor pathology came back ER-.

With the ER- information, we treated my following recurrences without anti-hormonals for the next 5 years...

Then, kind of for the heck of it and with new emerging info that each tumor can have different ER status, or there can even be cells with different ER status within one tumor, we decided to add back in aromasin as a small measure to see if it would help. It appeared to help for about a year. Then we saw the singular new spot in April, so we changed up to Tamoxifen, and left the other treatment (tykerb/herceptin) the same, and my tumor markers have dropped from the high in April at 40, to around 18 last week. Almost 3.5 years with a pretty good hold rate with very "small measure" treatment tweaks.

There is so much that is assumed based on erratic stats. Don't always rest on the stats. Just one girls humble opinion.

Re: Pet Scan for Stage 1?
 

WolverineFan - did you get the PET scan? What was it like? Did you get any results yet?

I'm nervous about getting radioactive dye injected - the nurse on the phone today told me I need to stay away from nursing mothers and young children for 24 hours. That's not a problem in my house - but I asked about small animals, and she said it wouldn't be a problem. I'm supposed to fast for 6 hours - but drinking water is OK. Does that seem normal? I'm wondering if there are any SEs to this test I need to worry about. I'm scheduled to get it next Friday - do I need someone to drive me home? Thanks for any answers my friends!

Re: Pet Scan for Stage 1?
 

Kathy,

PET Scan

The positron emission tomography (PET) scan creates computerized images of chemical changes, such as sugar metabolism, that take place in tissue. Typically, the patient is given an injection of a substance that consists of a combination of a sugar and a small amount of radioactively labeled sugar. The radioactive sugar can help in locating a tumor, because cancer cells take up or absorb sugar more avidly than other tissues in the body.

After receiving the radioactive sugar, the patient lies still for about 60 minutes while the radioactively labeled sugar circulates throughout the body. If a tumor is present, the radioactive sugar will accumulate in the tumor. The patient then lies on a table, which gradually moves through the PET scanner 6 to 7 times during a 45-60-minute period. The PET scanner is used to detect the distribution of the sugar in the tumor and in the body. By the combined matching of a CT scan with PET images, there is an improved capacity to discriminate normal from abnormal tissues. A computer translates this information into the images that are interpreted by a radiologist.

PET scans may play a role in determining whether a mass is cancerous. However, PET scans are more accurate in detecting larger and more aggressive tumors than they are in locating tumors that are smaller than 8 mm and/or less aggressive. They may also detect cancer when other imaging techniques show normal results. PET scans may be helpful in evaluating and staging recurrent disease (cancer that has come back). PET scans are beginning to be used to check if a treatment is working - if a tumor cells are dying and thus using less sugar.

Re: Pet Scan for Stage 1?
 

Thanks for the PET info Jackie! I didn't realize that it would take over two hours, so this is very helpful. Do you know if I can expect any SEs or need someone to drive me home? I've had Muga scans before on my own without any problems - and plenty of MRIs - but this will be my first Pet scan.

Re: Pet Scan for Stage 1?
 

Kathy--I had my second PET/CT scan two days ago and can vouch for the accuracy of the procedure and what to expect as posted by Jackie. I believe you will find the whole experience no more a burden than the Mugas, chemo and Herceptin treatments you have already gone through. In my case there was no real side effects that I could point to, other than being somewhat tired the afternoon following the exam. A good nap fixed that. The good thing about PETs is that the radiologist can interpret the scans rather quickly and give your oncologist a report usually withing 48 hours. So you won't have to wait around a long time for the results. Anyway, that is the way it worked for me.

One other thing--I was told that PETs aren't used for diagnosis of metastasis in the brain. They use MRIs for that, or so I'm told. Apparently, the whole brain shows up hot or glucose avid in a PET scan so any tumors there would be hidden.

Good luck with your PET. I believe you will find it a positive experience.

bird

Re: Pet Scan for Stage 1?
 

Hayley,

How did your test turn out? I hope everything was good.

Bird, during my treatment I went through a bout with headaches and my doctor had the MRI to check for brain mets so I think that is correct.

Re: Pet Scan for Stage 1?
 

Bird - thanks for the info - hope your PET scan was B9! I had an MRI of the brain at the start of this journey - it was actually ordered by my ENT when I was suffering from repeated bouts of vertigo (brain MRI was B9 - the vertigo was fixed by the Epley Manuever).

I'm a bit nervous for this PET scan because I've been complaining to my onc about a pain near my old port scar that's been bothering me for a couple of months. I'm hoping it has nothing to do with the 16mm mediastinal node or the thymic remnant that were found on the cat scan done in May of last year - I'm just assuming it's bone pain in the clavicle region due to the Arimidex and my swimming. I plan on bringing the last cat scan reports with me to the Pet scan since the cat scans were conducted at a different location - so they can have something to compare it with. Thanks again everyone for your help!

Re: Pet Scan for Stage 1?
 

finished year of herceptin 2 weeks ago. Dr. said I will get pet scan in Nov. Had one a year ago before any treatment.

Re: Pet Scan for Stage 1?
 

I'm amazed that all of you routinely get PET scans. I'm stage II and there is no PET planned for me unless I become symptomatic. I finish Herceptin in December, and my doctor told me he'll do tumor marker tests at that time, but no PETs.

In fact, it's not a recommended part of cancer treatment plan by the clinical oncology associations, so how it's happening for you all is interesting to me.

Re: Pet Scan for Stage 1?
 

haha, coolbreeze, i like "tamoxifen, the worst drug ever" in your sig file. :) although i am not a connisseur of drugs (though some in the 80's were actually fun), i would have to agree.

i never had PET or any other scan since my diagnosis in august '09. just the biopsy and sentinel node biopsy. sometimes makes me a little perplexed. how could my oncologist unequivocally announce i was "cancer free" when i finished chemo in january? she's the same doctor who told me my mother's ovarian tumor markers in the 400 range could be nothing *but* ovarian cancer, and lo & behold it was really pancreatic cancer.

i, too, am triple positive. for some reason, i thought that was common.

valerie

Re: Pet Scan for Stage 1?
 

CoolBreeze-- You raise a good point. I too have noticed a large variability in the treatments that posters to this board report for very similar cases. On the other hand, there are some cases where the treatment regimens match very closely. And for an individual case, you can many times find varying opinions among the doctors that attend to you as to what is the best course to follow. In my case, 2 of my doctors believe in scans and the third one does not. However, I found that the more clinical experience the doctor has, the less likely she is going to follow the guidelines verbatim. My radiologist told me that everyone wants to practice evidence based medicine, but they should never loose sight of the individual patient's circumstances and treat accordingly. He said that's called "practicing medicine"; and he is one of the two that recommended I get the PET scans. Apparently, 30 years plus of practicing oncological radiology has made him very cautious. A lot of this cancer stuff is the luck of the draw, I'm beginning to conclude.

bird

Re: Pet Scan for Stage 1?
 

My Pet Scan results showed a "mild uptake" in the hilar of the left lung - the SUV number was 2.7 compared to only 1.7 on the right lung. The radiologist recommended a follow-up cat scan with contrast, but my onc doesn't want me to get more radiation just yet; he's not really worried - said the uptake is probably only a vascular anomoly - but because I'm complaining about a pain in my collarbone/neck/chest region on my left side, he's sending me to a pulmonologist. I'm convinced the pain I have is due to my port scar or nerve damage..........but my onc is also ordering another tumor marker blood test to be done in October (the last markers went up a very tiny bit). So he's being optimistically cautious..........which makes me feel much less nervous.

Re: Pet Scan for Stage 1?
 

This thread gives me such mixed emotions. As I, too, feel I'm an individual but I don't necessarily feel like I'm being treated as one. I think I've asked this question so many times to my onc that she must be sick of me asking the questions. The doctors at DFCI say that unless you are "symptomatic" then that's when they will do scans. I don't get it. Why can't they just give us that peace of mind?? I know too much with what my mother went through and all I want is a brain MRI and maybe the pet/ct. My mother wax dx in 2004 and in Oct. 2006 it went to her brain (but it wasn't seen on the image until March 2007). She had MS and the ONLY reason she had a brain/spine MRI is because they wanted to compare her lesions from previously, however they never sent them to her MS doctor in October and our MS appt wasn't until March 26, 2007. If the hospital where she had the scans done in October read them correctly, she may be here today! My point is I know Her2+++ is more aggressive so why not just give us what we need? Has anyone gone to MD Anderson who is Stage I and what do they say??