Stage I ladies, did you have a PET scan?

Poke

Hello ladies. I am three months away from being finished with Herceptin. I finished chemo in February. I have two oncologists and both said at that time PET scans are not indicated for Stage I patients with no evidence of cancer in nodes or reason to believe the cancer had spread. I accepted this for awhile, but I am still finding myself terrified that it's lurking somewhere and I don't know about it. My primary oncologist says that she would order a PET, but things light up sometimes and it's nothing, and that we could start "chasing ghosts." I don't know what to do. I also wonder about a CT for my brain. I get worried about local recurrence around my implants that maybe I won't feel. I am just scared and worried all the time. Could anyone weigh in?

Ahicks62

I had a PET scan after chemo and before radiation. I had just moved from Michigan to New Jersey and had to get a new team of doctors. My onco in Michigan did not look at tumor markers, but my onco here in Jersey does. He saw they were elevated and wanted me to have a PET scan since I hadnt had one and I am triple negative. Triple Negative breast cancer tends to be more agressive. Fortunately there was no activity. He also told me there would be no more scans unless my tumor markers spiked or I had other issues. Since you had early stage cancer I think your onco probably feels a PET scan is not necessary. If you feel that strongly about it I would talk to her again.

changes

No - PET Scans are not typically done with Stage I breast cancer, unless there is a particular reason to be concerned. I ended up having a bone scan due to pain in a leg, and later an abdominal CT scan due to some other pain. They do not just routinely do scans for early stage cancer.

I was worried all the time the first year, also. It does get better with time. Now, when I have a pain, I think "arthritis" not cancer.

Poke

Ahicks: I'm glad they scanned you and everything was clean. I hope it gives you the peace of mind that I wish I had! Thanks for the advice.

Changes: Thank you for the reassurance. I hope my fear subsides a bit after my first year. I'm getting close!

Anonymous

Poke - Whether it is done routinely for stage I cancer differs depending on the cancer center.  My cancer center DOES do a petscan for everyone with any stage before beginning chemo.  Thank goodness they do because even with stage 1/ no nodes I had multiple liver lesions.  I am not telling you that to freak you out because my  center says that I am one of the only people that they have ever seen to have that happen, but very thankful that it was caught so we could make some stronger decisions such as hysterectomy as I am very ER+.  Also, the whole thing about chasing ghosts, etc. is a lot of bull in my opinion!   Yes, infection and arthritis can make it light up, but the reality is that very strong/active cancer lights up markedly different.  My original spots lit up at a 13 out of 15 in my liver with 2-3 being normal for that area (they were 99% sure that was cancer)  If something lights up just slightly, like a lymph node on my non-BC side did in one of my middle pets, they will often state that it is believed to be an infection, etc.  I think you need to decide what would make YOU feel better.  For me, I am the type that would want to be sure and have the pet just to be positive, but I know some people would rather not risk possibly having more tests, etc.  I'm well aware that I'm the random, weird, abnormal case, but I felt like I should at least share  as well.

Poke

Thank you, nbnotes! I hope you're doing well. I think you were in my chemo group? xoxo

bevin

Hi there, I agree with bnotes, it depends on your center. Mine does annual CATscans, and blood work with each visit. I did have a PET/CT as they found something on a CAT scan and checked it with PET. The PET SUV was 3.8 so low enough they knew it wasn't just infection, but not high enough they were considered it to be cancer. It turned out to be benign issues in my Lung.

If you're not comfortable without knowing, ask for a scan. If they won't give you one, then... they will if there are symptoms you're concerned about.

Good luck and keep us posted.

encyclias

It may also be a case of your insurance company deciding you don't meet the criteria for an expensive PET scan.  Insurance companies often refuse various tests and treatments that don't meet their basic requirements.

Hope you get yours.  It's a wonderful diagnostic tool for more than just cancer. 

dogsandjogs

Agreed! My insurance would not pay I don't think. My providers even have to get MRIs and CT scans pre-approved.

Poke

Thank you! I called last year and my insurance company does pay. I still don't know what to do. I'll talk to her about it when I see her again, I guess. Thanks ladies!

Aimhigh

Hi Poke!



I hope you're still checking this site. Although no two cancers are genetically the same, your staging and pathology are similar to mine. I too was not given a PET scan, the Doctors at Mayo all said the likelihood of it being somewhere else was almost nil. You are still receiving Herceptin so your fears are still front and center in your thoughts. I completed Herceptin in March of this year and have been on Arimidex since last November. I am still scared and feel what I'm sure are cancer twinges every other day:) Good luck to you as you near completion of your treatments.

TheNancyGirl

Another late response here... but I'm 2 years out from my diagnosis and have yet to be offered a PET Scan. They did give me 2 CT Scans my first year but now they're just doing bone scans 2 times per year. ( I don't think I can have MRI's because of too much metal in my body from injuries). I just had a one scan yesterday and asked for the first time what they're looking for. The radiologist said "bone mets"... I thought to myself, "ummm, shouldn't they try to find a recurrance BEFORE it's in the bones"?

exbrnxgrl

thenancygirl,

A recurrence that's found before it metastasizes anywhere would only be a local recurrence in the breast. There is no test or imaging that can pick up a distant metastasis until it's already metastasized. What I'm trying to say is that a local recurrence is not necessarily a harbinger of mets. I was never stage I but I was IIB until an unrelated PET picked up my bone met less than 6 weeks after my bmx. Not what anyone on this thread wants to hear, but true.

TheNancyGirl

Thank you kayb and exbrnxgrl. I didn't quite understand that. I appreciate the enlightenment. I (Like many others) try not to live in fear of recurrence or metastasizing but the cold hard facts is, sometimes you do. For instance I have 2 posts on the board... one was from over a year ago about a pimple that is STILL on my breast and the other one is from today, where I've developed a mole on my breast. Things like that bring all of your fears back up, front and center. Gives knowledge more power but sometimes more fear.

martina85

Hi Ladies

My son's partner is in Slovakia and has been diagnosed with breast cancer following a needle biopsy. In Slovakia they seem to offer radiotherapy before a lumpectomy, I may have misunderstood. What do you think?

exbrnxgrl

martina85,

This is a thread about PET scans. You might want to repost your question on a thread about treatments or create a new thread in an appropriate forum.

martina85

Thank you very much will do x

Poke

Hi ladies. I asked my PS for a PET scan last month and he agreed. (We had to keep it a secret from my MO, which is just sad, really.) Anyways, it was clean (!!) and I have not been this happy since my diagnosis. He wrote for PET/CT from cranium to thighs. I know they say unnecessary costs and tests are bad and they don't lead to longer survival, etc, blah blah but for me it was about quality of life. I can finally say with confidence in my heart that IT'S GONE. Thanks for the replies!

TheNancyGirl

That's wonderful Poke! Piece of mind is healthy for the soul. So glad that you received a NED!

Anonymous

Poke - thankful that you got that piece of mind!