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.